Welcome!

This is my Temporary 2008 Diary page until I get another program to work.

I've spent 40+ hours working with another program and in those hours, I have

learned by trial and error. Time now to read the 698 page Users Guide.

Until then, this is my lame and weak attempt to let y'all know I am still alive, and

in the land of the living. Not Yet Dead either. Bear with me.

January 5

We Need A Miracle at Duke

A dear CF friend of mine is fighting the battle of her life right now.

Tricia, like me, has CF, and also like me, she was also adopted too! Wow....

Anyhow, she was listed at Duke for a double lung transplant. Shortly there after she and her husband Nathan, found out Tricia was pregnant.

The doctors at Duke suggested aborting the baby so she could go ahead with the transplant.

Tricia and Nathan said NO. Gods will was for this child to be born.

Tricia is now in her 24th week of pregnancy, but many complications have occurred. Her lungs are failing her.
Tricia's CO2 levels are up (which is not good), and they are moved her to the ICU a day ago.

They'll have her up there for a little while, and if her CO2 levels do not go down, they might intubate and ventilate her and then perform a tracheotomy.

The intubation and tracheotomy are very risky for her, and there is a chance that they will be forced to take the baby via C section if her body does not respond well.

This is basically crunch time and she needs your prayers more than ever right now.

God is surrounding the MICU waiting room with His Angels and the medical team is being very emotionally responsive to the family.

Tricia might die. This unborn baby just wants to live.

Only the Great Physician calls the shots, and He does this for His own plan and purpose.

Don't doubt the power of prayer.

Pray the medical team will have the answers to her needs. We know they have the skill and the knowledge, but it's up to God now.

Bless the nurses and doctors caring for Tricia. My Pal.

January 8th....

What a beautiful and hot day it was again today here in southern Virginia!

It reached 78 degrees outside and truly, it was wonderful!

Thank you Lord for an awesome warm day.

I am heading down to Duke soon---they have to get a bed for me first.

It means moving people out of the Pulmonary step down unit to get me in.

This is where the fresh ICU graduates go when they are too alive for ICU, but too sick to be dumped on a floor with an overworked nurse who has to manage 6 cantankerous patients,

all coughing, wheezing and trying to breathe.

They know I am in the queue and they'll call in a day or 2.

If I were very urgent, I'd hesitantly go to my local hospital in Norfolk, but they not knowledgeable when it comes to Cystic Fibrosis and they would throw me into the cesspool

of germs called the Vent Pod. Been there, done it, got MRSA to prove it.

Anyhow, as I am not a tinge of blue now, I can wait a tiny bit. Not much longer or else I turn gray.

But I know when I have to be seen and it can be very scary if it escalates to an ER visit.

So I'm waiting......

My sister Noreen called today and we have a nice chat. We hope some of my family will come visit us in May.

Bring it on! Anytime my family can come, I want them to come. What else to write here.......

So far, Mousey Mouse has not appeared to be pregnant. We haven't caught her long enough to have a good look, but she doesn't look fatter.

Brian continues to work at WHRO (Public TV) with an impressive listenership on his internet radio program. Check it out!

http://www.the1920snetwork.com

OK....I'll make the best of my upcoming birthday (January 16) while at Duke.

Hey, I enjoyed Christmas and New Years at home, so now it's time to pay the Piper.

Email me. I'd enjoy hearing from you.

Love from Lori

January 9th....

We Got Miracle at Duke

And She Will Be Called....

Gwyneth Rose Lawrenson
Gwyneth - A Welsh name meaning, "Fortunate, Blessed" and/or "White, Fair".
Rose - An English name
She is 1 pound, 6 ounces, 24 weeks old.

Both mother and daughter are in the ICU on ventilators, both very ill.

One is just beginning a new life, while the other is praying for a second chance at life.

Her husband keeps a web blog. Go here to read about them.

Confessions of a CF Husband

January 10th....
Hello Friends and Family,

I'm still here at home waiting for the phone to ring.

It will be the CF Nurse calling to say they have a bed for me and to start the 4 hour drive to Durham, NC.

Amen for the team who is making a place for me to come to for treatment.

They are full and have a lot of "sickies" in house now.

You can send me a Duke get well card via email, which will be delivered to my room.

Here is where you go to do it.

Send Lori a Duke eCard

We are having an amazing week weather wise here with 70 degree plus sunny days.

My friend Tricia is fighting hard, as is her new baby Gwyneth.

I hope you had a chance to log onto her husbands blog to update yourself and to pray for them and for the Duke medical team.

The hand of God is moving at Duke.

He is the Great Physician and His work in action deserves praise!

Thank you Lord God for another day for these special friends. Whatever YOUR is Lord, do it.

We'll accept Your will, which is ALWAYS good and perfect.

Love Lori

Saturday January 12...

Brian and I arrived at Duke and were quickly admitted and taken to my room, my home away from home in the “CF Cootie Corner” on Duke 7800.

It was a blessing to be admitted at a time when Dr. Kussin was the physician on call for the time I came in.

Usually one doctor takes the first 2 weeks of CF patients, then trades them off to another doctor for the last 2 weeks.

I count it all joy when I land in on Dr. Kussin’s watch. Why? He knows me well. He hates it when other doctors change or stop IV meds and it is something

he would not want done. He gets angered when the weekend doctor comes in and decides to stop an IV antibiotics because I have diarrhea.

All IV antibiotics clean my guts out, and the meds I am on DO work, so leave them be to do their job.

Dr. Kussin is very protective of his CF patients, very protective. He goes to bat for them and advocates for me. I like him… most days.

Get him on a bad day and he can roar the loudest. Get him on a good day and he is a purring pussycat.

Thanks Dr. Peter Kussin for being involved in my care and working with me to keep me breathing.

Evening time Saturday Night….they called in the Interventional Radiologist and the team to come and put in a femoral triple lumen line for IV meds.

You know I have to go through this every time I come in, as I have outlasted 18 Medi-ports and countless PICC lines, all eventually malfunctioning, blocking or breaking.

Having no veins in my upper chest for another Medi-port or PICC< we are left with a Right Femoral approach each time I come to Duke.

While waiting for the procedure, I asked for a Bible. They brought me one and I knew in Psalms 34, there was a verse I had sought out many times before,

when I needed comfort. So I leafed through the frail pages to Psalms 34, verse 4, which says:

I sought the LORD, and he heard me, and delivered me from all my fears.

This passage quieted my heart and warmed my soul that the procedure was under HIS control so all I had to do was Trust Him. Let God take over and do His will.

Amen for letting go. The doctor got the line on the first attempt, and I wasn't’t crying nearly as much as I do when having this painful line inserted in my groin.

Wednesday January 16...

Happy Birthday to ME! Today I am 44. What a miracle! Another birthday in Club Med, sick.

One thing I can count on is for my 5 sisters to find me, track me down, and sing me Happy Birthday over the phone.

And indeed, I heard from all 5 sisters wishing me birthday greetings for having lived another year.

As adults with CF continue to push the boundary of longevity, it IS worth celebrating. Upon being born, your parents are told you will die young,

and not to expect you to reach adulthood. Sadly, for the majority of people with CF, this is true.

However as advances in medicine and transplant have excelled, we are living longer.

The CFF (Cystic Fibrosis Foundation) now shouts out the average life expectancy of a child born with CF now, should be 33 years.

What a triumph of research! Yet to get these numbers, thousands have died. I am one of less than 1200 adults with CF in the USA who are past age 40.

Less than 1200. Now I can personally say that I know at least 10 of the “older” CFers out there.

I have internet and phone relationships with at least 10 of them, maybe 12 in all. So we are out there, defying the death stats that say we should not be alive.

So I am alive to celebrate yet another year of growing old(er).

It’s nothing to be quiet about, saying I am now 44, because of the miracle it has taken to get here. Amen for birthdays.

Oh yeah….another wonderful thing happened today. 2 things actually.

Brian surprised me by driving down to Duke to be here for my Birthday and Dr. Kussin bought me a strawberry shortcake

from the Mad Hatter in Durham, and brought it into my room along with the nursing staff and they all sang Happy Birthday to me as we ate my cake.

Wow….so cool that my doctor would do that for me.

Thank you Dr. Kussin and Nurse Edana Christy for making that happen.

Brian coming was the best gift ever! He took the day off work, drove 4 hours to get here, and spent time with me.

Too soon, he had to go back home, but it was my Birthday and he was here. Amen for that and for the blessings I received.

Friday January 18...

Today a CF friend of mine died. His name is Chad. He was a new lung transplant, just a fresh new transplant who was discharged

yesterday from Duke and this morning he woke up and died. This hit everyone off guard, including the Lung Transplant Team and especially Dr. Kussin.

We are all in shock.

It is thought Chad had a PE (Pulmonary Embolism) as an autopsy was declined, so this is the best guess based on symptoms and his complaints

of shortness of breath before he dropped dead. When my friend Jennifer called to tell me, I cried. I too, was so sad for his young wife and daughter, for his whole family.

To have come this far and then to be dead over a PE is senseless.

Yet, in an instant, Chad woke up in Heaven, face to face with God, and breathing the most perfectly he has ever breathed.

He now has his new body and lungs, and he has been healed of his CF.

I could not go to the funeral as I am an in-patient now, but Dr. Kussin, Nurse Edana and my friend Jennifer did go to show support to his family.

It was a rousing home going I am told, and God was glorified in the service.

Chad was a child of God and trusted Him. He is home now, in a perfect body. Amen for his faith.

Thursday January 24...

I have not written for about 6 days, feeling sad and morose about Chad dying and for my internet friend Tricia who is also fighting her own CF battles.

Her new daughter Gwyneth is holding on to life in the Duke NICU and I am in constant prayer for the Lawrenson family. You can read her husband’s blog here:

http://www.65roses4pattysue.com/

Still thinking about Chad, I was searching the internet Bible on line for scriptures that would help me see god glorified in Chad’s home going.

Here is what spoke to my soul:

"But our citizenship is in heaven.

And we eagerly await a Savior from there, the Lord Jesus Christ, who by the power that enables Him to bring everything under his control,

will transform our lowly bodies so that they will be like His glorious body.
-Philippians 3:20-21

I haven’t been sleeping well on the vent these past few nights. I have been triggering it every minute and the alarms drive me crazy.

The solution is to change out my trach to one that does not twist a quarter of a turn when attached to the vent.

Duke is trying to find me this kind of trach as they do not keep them in house.

Whatever….I will sleep better when I am home with a few fluffy kitties on my bed purring. That’s what I need…to be home.

Good News is that on Sunday, I will be discharged home! I am feeling much improved since coming in and it is time for me to go home.

So Sunday is the day. Brian will come get me and we leave. Another successful tune up this time and I will return to feeling better.

Thank you Duke 7800 for being there for me again and caring for me.

Also, in a pleasant surprise, I received a phone call from a friend in Texas. Her name is Marnie and she is an accomplished artist.

She follows my web journal and has been praying for me and Tricia too.

From my journal, she clicked on the link to Tricia’s web and has been following her progress too.

Her church in Texas are prayer warriors for the both of us. Amen for that!

Marnie wanted me to relay to Nathan Lawrenson that her church in Texas has been praying for Tricia and checking her progress by reading Nathan’s web.

Amen for the technology that allows the world to open up to everyone.

So my friend Marnie, Thank You for calling and for your prayers.

Friday January 25...

Sadly, I received a phone call today telling me of the death of another friend from CF.

Her name was Susy Dirr. Suzy was an exceptional CF patient because she already had 2 double lung transplants and was desperately seeking a third.

I knew Suzy through my friendship with Laird Proctor, my mountain man living in Idaho who is himself, a Duke double lung transplant for CF now 7 years out.

Laird is an amazing example of the gift of new lungs because he downhill skis, rides his motorcycle and truly has lived a second breath with new lungs.

When I was listed at UNC, Laird introduced me to Susy. She was a tough little cookie who wanted to go all the way, no holes barred.

She fought with her fingernails clinging to every last hope that UNC would always come to her rescue and make her better again.

The reality of it is a third set of lungs has not been done and at what cost? Should they give a third chance when some die waiting for a first transplant?

It was a stirring, emotional debate about the wrongs and rights of operating yet again, and UNC was not able to pull it off for Susy.

She died quietly at home in Athens, GA Thursday afternoon, in hospice care, with her family at her side.

Just the night before, she was eating a bowl of cherries and her family thought she was back to being her old self. How quickly things can change.

We saw that with Chad Scearce, just a week earlier, with his very sudden and totally unexpected death.

So yet again, we say good bye for now to a brave soul who lives with CF and fought so hard to have life.

The pain of friends dying from CF never stops. Yet I wouldn't’t change my friendships for the world just to avoid the pain.

It got to be her family was taking reservations for friends and family to come visit her, as she was sleeping most of the time and exhausted.

I hope my death will be quick and not drag on over time. I’ve got my bags packed and am ready any time God calls me home.

My death will be a celebration, not a pity party. I am home in Heaven, face to face with Christ my Savior, and breathing like normal people do,

and without a trach either, so bring it on when He calls me home, and not a moment before that.  Love Lori

Sunday January 27...

I'm home! Amen for a good CF tune up that has made me feel better than when I went in 16 days ago.

A lot of drama happened during this stay, with 2 CF friends dying and Tricia and Gwyneth fighting to live.

I am exhausted so I'm going to nap now, surrounded by 5 cats in my own bed.

I tried to hook up with Nathan Lawrenson but each time, we missed each other while at Duke.

Next time, promise, we'll try to connect, OK?

Thank you Lord Jesus for the wisdom of the medical team caring for me who used the right antibiotics and got me through this tune up.

Thank you Brian for loving me so deeply even though distance kept us apart, and for being there when it mattered most.

Thanks also for Birthday greetings, which made me smile and love life because I am getting old, which for a CFer is a miracle.

Amen God for protecting me and showing me your love.

Love Lori

Monday January 27...

Thank you Lord for allowing me to wake up refreshed today, home in my own bed.

I slept well last night just being in my own bed, with Taylor cat at my side and the Sugar Gliders gliding about the bedroom.

I did not sleep in, as I have much to get done.

Lots of bills are waiting to be paid, and I have to get the income tax stuff rounded up for the accountant.

It is a chilly day here in southern Virginia, yet grateful we don;t have snow.

It is a rare day ever if one flake falls here.

Tomorrow I'll venture out the to pharmacy to get some prescriptions filled.

I am breathing well (for me) and have no struggles with thick, nasty sputum. Amen for that!

OK family and friends, I am blessed to be home and feeling well, so life goes on.

Thanks to Dr. Kussin and my medical team at Duke for their care.

They got me through another tune up and sent me home feeling better.

Love Lori

Friday February 15...

Hello Dear Friends

WOW...My life got busy there these past few weeks, which is a good thing.

Many of you have asked where I was."Still alive?", you asked. YES. Very alive.

Life just happened.

That's all.

Nothing to gripe about, moan over, or kvetch (Yiddish word for complain) loudly.

I was just living.

As we all should.

I hope you have keep up on Tricia's web page and read the updates from her husband Nathan.

http://www.65roses4pattysue.com/

What a blessing they are and it's amazing how God is using them to show Duke the power of prayer.

Tricia has a hard road ahead, but the miracles thus far, are answers to prayers.

Thank You Lord for showing us YOU are the Great Physician and YOU call the shots.

I am going to a forensic conference tomorrow so I'll be out of contact for a week.

That means I am feeling well enough to go, which is a good thing!

So look for me down the road.

I'll be back soon, Lord willing.

Love Lori

Tuesday February 26...

Lori here. Not feeling well. Sorry to spoil your morning coffee.

Got home from an awesome forensic conference in Washington, DC, and had a healthy time.

Saturday, we hosted a 65th birthday celebration at our house for our neighbor and had 32 people come to the party.

It was wonderful!

Sunday morning I missed church and slept in until 1:30PM. Boy was I ever tired.

Then Monday I felt worse.

• Fever 101.2 for 48 hours
• Chills (NO rigors)
• Trach EXTREMELY sore
• No swollen lymph glands
• Trach stoma oozing copious watery, secretions that look like opaque wax paper.
• Sputum my usual nasty.
• Taking Tylenol plan 2 tabs prn for fever above 101  
• Brian is well, so he is not the source of this misery.

I emailed these observations to Duke this morning and will wait for their feedback.

I think I'll stay in bed and sweat it out.

I don't feel like doing much of anything, except sleeping surrounded by a few cats (fur balls) on my bed.

What can YOU do?

Pray.

Prayer always works, even when we do not get the answer we were hoping for.

So please pray that I can avoid and admission to Duke and can get over this at home.

I am hopeful in a few days, I'll feel better.

Should you email me, it might be a few days until I respond, so be patient.

Seeking Gods healing and knowing only the THE Great Physician calls the shots,

Love Lori  xOOXXoooXOOoo

PS: Thanks Sister #1 for the Birthday box, which arrived in one piece and tastes wonderful!

5:30 PM Tuesday February 26...

We heard back from Duke.

The CF Team Nurse called back and said there are 15 people in the ER waiting for a bed ahead of me and she has to try to get abed on the CF floor in the cootie corner, which will take some time.

She said she'd alert Dr. Kussin and begin some bed shifting to make room for me in a few days.

I said I'd keep in touch and agreed to come down when they called.

Wednesday 4:00 AM February 27...

Urgently, Brian paged Duke this morning.

Locating screwed it up and could not find the CF Nurse, so they sent me to the Lung Transplant Team.

The nice Doc on call fielded my call and told me how to use the locating system to find the CF Nurse myself if I went online.

We did that... and found her. Brian then paged her directly.

She called back, startled to hear her pager vibrate and wake her from a sound sleep at 4AM.

Brian told Edana my fever was 104.7 and I was newly throwing up.

Edana said to take me locally, to Norfolk General, be seen there, and if admitted, I could be transferred later to Duke. Agreed!

Off to my old haunt, Norfolk General.

To my dismay, my cool Pulmonary doctor was NOT on call. Oh No!!

No Dr. Randy Garnett.....Everything could be downhill from here on in, depending who was on call and who knew my medical history.

They said Dr. Michael Eggert was on call, and that was Cool!!

There were others who made me very nervous and whose care I was hoping NOT to be admitted under.

It's the luck of the draw.

The ER attending, Dr. Lang, saw me in Trauma room 9. I had brought my last 2 discharge reports with me.

He read them and realized it would come down to inserting a femoral line in my groin this time for treatment. Is that what I understood?? YES!!

He left the room and then came back in 10 minutes.

He had paged..... Sweet Dr. Randy Garnett.

Randy said "Good Luck with that femoral line", and advised him of my CF health issues, etc.

Like the young pro he was, Dr. Lang got the line in, spot on, dead perfect-- with ultrasound guidance in the right femoral vein.

of course, I went cold turkey without the benefit of Morphine, Versed or Fentanyl, for pain. I had Brian's hand to hold as my dose of comfort.

Amen for Brian's warm hand of comfort.

Later. Ta Da...Dr. Randy Garnett showed up. Knock Knock? Whose there? Randy?
Come on In!!!  

My luck was changing for the better. We talked, and he agreed to admit me and start treatment.

They did a double nasal swab of both nostrils to see if I had that nasty flu going around and we waited for the result, then had a portable x-ray done.

The x-ray showed NO Pneumonia (Amen Jesus!), an infiltrate in the right lobe but not to worry, and guess what?

The Rapid Flu Test was positive!

I have Type A influenza!!

Now that meant I was put on Droplet/Respiratory isolation.

IV meds were started and I was still at 105.2 temp, sweating and feeling clammy and cold.

My hair was soaking with sweat and I was not feeling good.

Then about 5PM, Duke called. They had a bed and wanted me there.

Arrangements were made to transfer me via ambulance to Duke, a 4 hour road trip.

With no bathroom on board either!  NOT AN IDEAL ROAD TRIP!!

I had sent Brian home by now and I was at Norfolk General. At 10:20 PM, we left by Ambulance to Duke.

We arrived at Duke at 01:50 AM to my waiting bed on the CF Floor, my usually home, Floor 7800, Room 7815.

It was a long night.

All along, to reduce my 105 fever, I was given suppositories. Not a nice thought, but they worked very well for me!

My fever BROKE while on this method of treatment with just 3 doses and now I am not as likely to shun them when I am vomiting.

They worked for me!

When I arrived and settled into Duke, I was just 102.2 degrees F.

Anyhow, IV meds were hung, blood and sputum cultures were drawn, and I was on lockdown---not allowed to leave my room.

The signs on my door say: RESPIRATORY ISOLATION and 2) CONTACT ISOLATION.

The first one is because of the Flu, as I am ALWAYS on Contact Isolation because of the CF bugs, but now the staff were very much more cautious around me and masked and gowned and gloved 100% of the time while in my room ALWAYS. Lindsy, my cool nurse, told me a healthy teacher from the community came in with the flu and it progressed to pneumonia and she died. It scared everyone and Infectious Disease protocols became very ~in your face~and mandatory.

Anyhow, I was too sick to get out of bed (except to go pee) and Brian called several times a day to talk to me and my nurses.

By Friday AM, I was sicker.

I was off the vent as I was triggering the alarms for coughing too much, and I was getting tired from not sleeping.

Dr. Kussin got aggressive on morning rounds and tried some new interventions that would have saved me for the better or it was up to more drastic measures.

Back on the vent for 20+ hours with PEEP, to help expand my lung volumes and get the crud out of my chest.

Slowly, I am doing better. But best of all...NO MORE FEVER!!

It it now Sunday March 2...

Brian has been visiting for the weekend. He brought me clean clothes, some gum for my bad breath, and my laptop.

So now I am catching up on the events since I left home on Wednesday morning.

I have received emails from friends and Duke volunteers have delivered them to me. Thank You.

You can auto email here at this link below, enter ROOM 7815 on the sheet, and they will find me.

Send Lori a Duke eCard

My Friend Tricia ( her husband Nathan and little baby Gwyneth), are 2 doors away. At least Tricia is. She is being kept company by her mother during the days and I see her walking around the floor doing her exercise, and she gets to go to the NICE to see her little girl. Husband Nathan comes in for the night time shift and sleeps in a cot next to her bed. I emailed him today to touch base and so we can chat. Tricia looks so much better, although she has come a long way, she has a whole new battle ahead of her when she gets her call for new lungs, so please keep them in your prayers, as also the donor family needs your prayers for their grief too.

So Friends and my Family, as I am able, I'll email and update you so you know I am still alive and in the land of the living. Thank you Gordon and Noreen for calling and tracking me down. You see, there is another patient in 7806 named Lori Hughes, and seems she is getting some of my phone calls!!  I am in 7815 under Lori Morris-Hughes, so don't hesitate if you get the wrong "Hughes". Seems most hospitals can't handle a hyphenated last name, so they knock out the maiden part (Morris) and list me under HUGHES, until I am well enough to PROTEST.

I'll have a better idea of how long I'll be here when I see Dr. Kussin Monday.

I am doing better and feel better.

Thanks for your prayers, and also Ruby who calls and tells me how TinCill scares the bejeebies out of her all the time! Love to you Miss Ruby!!

Hugs from Duke....Lori

Monday March 3...

I had a good day today and felt better than a few days ago.

The IV antibiotics are kicking in and doing their job.

NO FEVER at all, or chills or sweats. Wonderful news to report.

Also...there is some confusion about one issue here.

There is another patient with a similar last name and she gets my mail and phone calls.

Here name is also Lori Hughes, without the "Morris" as her maiden name.

My Brother-in-law Gordon called 2 days ago and the nurse let her speak to him on the phone, but it clearly was NOT ME!

Today, my nephew Timothy called and spoke with Lori, the wrong Lori.....

The Duke switchboard can not work with hyphenated names, so they just shortened them to what they hear and send the call there.

So ask for Lori Morris-Hughes, and you get sent to the room of Lori Hughes.

More of a coincidence is that she also, has Cystic Fibrosis and is on my floor too....just a few doors away!!

So Lori Hughes calls go to Room 7806..BUT....

Lori Morris-Hughes calls for me, should go to Room 7815. So to dial my room, call:

(919) 681-7815

Confusion handled better now, I hope.

Hey, the other Lori wasn't too upset getting calls from my weird family in Canada.......

My nephew Timothy is here in Raleigh with his wife and new baby, to show off the baby to his in-laws.

He heard I was Duking it out again and will come and visit me this time around.

When he flies in to RDU from Toronto, he visits me. This is the second time I have been here at the same time he has come to visit.

Without these visits, we don't see each other.

He is leaving his new baby girl at home at my insistence.

Do not bring a healthy baby in to a germy atmosphere like a hospital if you don't have to.

I am over the Flu symptoms and hanging here for a CF tune up, so I'll buy some time to be well on the outside.

My sister Nancy (she's sister #3) and I are going to Disney World at the end of April for a visit, so I need to be well to go.

With this down time now, I AM resting a bit.

OK....bed time soon. Time to turn on the vent and connect. Gotta get these lungs ventilating and healing.

Thank you for your prayers, your emails, and for your love.

It means a lot to me when I am stuck so far away from those I love, to know you still think about me.

Until later, Love Lori  oOOxXXooox

Wednesday March 5...

Today is Wednesday.

Yesterday was a blurr......

I did nothing all day but rest, sleep and cough.

It was a good day to heal.

Now it's Wednesday. The medical team treating me has changed and now Dr. Marshall and his team follow me.

He does call Dr. Kussin to put the treatment plan by him too, so my head honcho doc is in the game. Good.

WE Interrupt This Call...............

My phone just rang and Sister #3 was calling from Toronto!

She just read her email telling my family I was here at Duke and was checking in with me.

I've heard from most of my family now and the internet and email allow this. Wonderful.

We have a wonderful week at Disney planned for the end of April, just sisters. Time together laughing and bonding.

Back to today......

I am totally over this viral thing I got hit with and done with it. Gone.

Now, I am hanging in and in, for a very thorough CF tune up.

My sputum could be cleaned up more, so that is what I have asked of them.

Toss in some Vanco here, some Tobra there, and tweak me with some Zyvox for good measure.

In the end, this is where I need to be. Duke.

But AMEN for those who prayed for Brian and I, because I feel soooooooo much better now.

Maybe today or later tonight, I'll leave ny room for the first time, and walk the hall ways.

I am blessed, and feel well. Keep it coming.

Love from Lori  x00XXxxoooxxoOOO

Late Entry: My nephew Timothy came to visit me at Duke tonight.

Timothy and his wife live in Barrie, Ontario, and come back to Raleigh, NC to visit his in-laws.

They brought their new little girl, Teighan, and I went to the lobby to visit with Amanda and the baby.

Teighan looks like Timothy, they say.

She has inherited Scottish "jowls".

Another branch of the family tree delights us all.

Thursday March 6...

It's another sunny day here at Duke and the city is alive.

While my family in Toronto is dealing with a snow day (schools closed due to too much snow), in the South here, it is a nice, chilly Wintry day.

The medical team rounded on me already, hitting my room about 07:45AM.

Dr. Marshall has been talking with Dr. Kussin and the game plan is for me to stay here at Duke through next Wednesday to get IV antibiotics.

It was confirmed today that my sputum is again, growing MRSA (Mer-sah) bugs.

This is not new to me but last time here at Duke, I had Sensitive bugs. Now my bugs are somewhat resistant.

Just means I'm sitting here for a good hit of Vanco and Tobramycin to make me feel better.

Let me say I am 100% better over my admission state, and as I am now done with this virus I had, it would benefit me to sit here a bit longer to get the IV meds I need to stay well.

Since I can only get the medications through a femoral line, I must remain an inpatient.

All this means is that I'll be in good shape to visit Disney in late April with sister #3, and know I am tuned up the best I can be.

My friend Tricia is 2 doors away from me here.

I catch a glimpse of her as she walks the halls and it's nice to see her feeling a bit better.

I got news that my neighbor at home, is sick with a terrible cold/flu just as I had it.

Amazingly, Brian is healthy, and not sick. Shows you how your circle of friends can get your bugs and pass them around.

I'm not one for brilliant insights today, preferring instead to be at home with a few furrballs on my bed, purring on my chest, and feeling all is well in my little world.

Soon. Soon I'll be home.

Wednesday next week my IV antibiotic routine will end and I can be discharged home.

Once again, Duke has worked with me to make me feel better.

Late Entry....

The patient in the room next to me, died today.

No body was at his side.

Family was not there to cry.

He died alone.

How sad.

Friday March 7...

It is pouring rain here and a miserable day, still, Durham needs the rain so badly that it is very welcomed.

They cry about drought and needing rain, well, here it is.  

The flowers are asking for a drink.

The team bounced in here today and basically, I am just sitting patiently as I get IV antibiotics.

I am positively growing MRSA bugs and the correct treatment is IV Vancomycin, which I am getting.

Brian will come down after work on Wednesday, sleep over, and they will pull my femoral line at 8AM Thursday... then we are heading home.

I will have stayed for 16 days, which is a high price to pay for getting the Flu. But not to complain, as I'll be tuned up for Disney.  

My friend Donna reminded me that my dead neighbor at Duke was NOT alone when he died.

It is just sad that when you know your family member is dying, that in the end, he was alone.....or was He??

I was reminded that God was always by his side. Always. But where was his family when it mattered??  

My friend Tricia is 2 doors away and I often see her up walking the hallways. She is waiting for the gift of life to arrive for her. A second hand, set of pink lungs.

Dr. Kussin just walked in.....  

That was the quickest 2 minute doctors visit ever.

He asked how I was doing and I said "much better".

He said this time I came in very sick.

I asked "How sick?"

He replied "sickest I've seen you yet."

I told him now I am over the influenza virus, I can only get better from here on out.

I told him it was confirmed this time I have MRSA (Mer-sah).

Dr. Kusssin was surprised and went for my chart. He looked over the micro reports and said "Damn.You have it".

"But I think it is a new infection, and not a hanger on from previous times.

Your last 3 labs were NEGATIVE for MRSA, having MSSA (Meth Staph Sensitive Aureus) instead, but this is a new finding.

Oh well. You are on the right cocktail for it and you will feel better. Home on Thursday? "Yup!"  

Out the door he went. I like that guy a whole lot.  

So today, my world rocks. Everything is OK and I'll be home soon, Lord willing.

I'll be ready to return to work at months end.

Saturday March 7...

Today was a mellow, do nothing day here in the hospital.

The floor was quiet and as it rained most of the day, families stayed home, making the halls quieter than usual.

Sunday ought to change that as people always flood the hospital after church to visit those confined.

I am doing very nicely and am walking the halls every day.

I cough all the time and spew out yellow sputum, but at least I am clearing my airway by doing this.

When I was admitted, I told Dr. Tapson I knew I was growing a MRSA bug by the taste in my mouth.

YUP! I was right. I do have a new strain of a MRSA bug in my sputum and it is sensitive to Vancomycin.

Just a pat on my back for knowing my CF bugs by taste. Usually Brian can taste my bugs on my lips when we kiss (ewwwww...) but this time, I "tasted" it before he got wind of it.

I am still planning to be discharged this coming Thursday. Being so, I asked Brian NOT to come visit me this weekend and to stay at home doing other things instead.

It's 202 miles to get to Duke, and Brian deserved time out for being so dedicated to me. So today, he enjoyed time at home working on a new AM receiver he bought on eBay.

He'll work Wednesday, then come to Duke later that night and we'll go home in the morning, having finished all my IV antibiotics at 8AM.

I am excited to be going home since I am feeling so much better!!

My nurse tonight is Mary. She had me last week when I was admitted. She said I looked so sick and blue when I was admitted that compared to now, I am 100% better.

Amen for effective medicine, prayer, and God who is watching over me.

Good Night, Love Lori  OOooXXxxxxoXOOOx

Wednesday March 12...

Wow.....how time flies. It's now Wednesday and tomorrow, I am going home!

Amen for answered prayers again. I am feeling the best I can be now, and am ready for home.

My neighbor here at Duke is Tricia Lawrenson, whose husband has a blog about their journey with CF.

Nathan journals here, so click and you can read about their faith and adventures with CF and transplant.

Well last night I saw Tricia and Nathan walking the hallways and I invited them to come to my room for a pizza dinner.

Tricia was not able to come, but Nathan came, and brought his mom and her best friend, so the 4 of us chatted and got to know one another.

Now everyone is waiting for a good set of lungs to become available for Tricia, and that she can heal, grow, and raise her new little daughter.

Amen for the miracles God has performed in their lives and until you read Nathan's web page, you can't understand it all.

So click the link above and settle in to read about a miracle in action.

It's about God using this young married couple to show Gods love in action, and how they walk by faith.

In September when they have their CF walk in Nags Head, if we are able, Brian and I will go, since Nathan asked me to come.

Read his web site and you will be touched how such wisdom comes for this young guy. Amen!

Click here:   Confessions fo a CF Husband  to read his adventures of loving, living, and proclaiming Our God is An Awesome God!

Lori & Nathan share their experiences with CF

I am feeling so good today, I wish I could maintain this feeling of wellness.

Compared to the day I was admitted (15 days ago), I am 100% better and so much healthier and happier now.

No fevers or chills, and aside from this persistent cough, I am doing well.

Brian will arrive here late tonight, and I'll be discharged early tomorrow morning.

It's a 4 hour drive home, then I'll settle in to my bed, read the mail, pay some bills, and nap with a few kitties on my chest--of course!

Also, my pal Laird and his wife flew in to Durham from Boise for his transplant clinic check up.

I'll see then today when they come to visit me, and it will be good to see this Duke miracle in person again.

Laird was fixing to die, his CF was end stage, and then he came to Duke where he had a double lung transplant.

That was 7 years ago. Now he comes back once a year for a check up and he is doing well.

He is a real mountain man, skiing and playing outside in the outdoors of Idaho.

We talk every week on the phone and he encourages me. I really have a good bond with Laird.

Well, I'll close here, knowing if all goes as planned, I'll be home in 30 hours.

Amen for Norfolk General, who saw me in their ER, to Dr. Randy Garnett, who always is a joy to see, to Duke for transferring me, and for the nurses and doctors

who stuck it out with me and got me feeling better. Amen for Kim Osborne who will pull my femoral line tomorrow and send me home. Thanks to all who have called and prayed.

Your act of kindness was appreciated.  Love from Lori   XXooOOxooxo

Friday March 14...

Home. It feels so good to be home. Back in my own bed, with furry kitties surrounding me as I lay on my bed.

Puddy cat, having really missed me, lands a spot right on my chest that covers my trach with her fur. I reposition her, thank her for cuddling up with me, and she purrs in contentment.

Taylor, seeing the affection Puddy Cat is receiving, then moves on over to my head and lays closer to my face, so she can lick my temple and enjoy the salty taste.

Bright and early, I was ready to be discharged yesterday. At 0715 AM, Dr. Marshall came in to make sure I was good to go and released me. Kim Osbourne, wonderful nurse she is, came in and removed the femoral triple lumen catheter from my right groin, which fed me IV meds for 2 weeks. Gone, no bleeding, I walk the hall for 2 laps to make sure I don't spring a leak from the hole the catheter left. Good and ready, I head to the front door where Brian is waiting. He loads up the Aviator SUV as I crawl into the back seat and make a bed to sleep in. My comforter and pillows envelope me as I quickly fall asleep for the 4 hour drive home. Now the healing begins at home.

Thank you to all who got me through this nasty bought of Influenza and CF and to those who emailed, called and prayed.

Thanks to Nathan for coming to chat with me and for having great hope that a donor will come soon for his wife Tricia.

Thanks also to my colleagues at the Medical Examiners Office who allow me to drop out of life when CF beckons, and still support me with love and kindness, hoping I'll be able to return to work when I am ready. Also for the emails you send to make me smile. It helps tremendously to know you think about me when I am cooped up at Duke.

Mostly, thank you to Brian, who took over when my fever hit 105 and took me to the hospital. He always knows what to do when I am not making sense, and is always there to caress my sore body and hug my wounded spirit. April 19th will be 10 years of blessed bliss to this man, the man, God made just for me.

Thank you Honey.

Forever and a Day.

Love Lori XOOXooxooxooX

Friday March 21...

Hello Family and Lurkers,

It's taken me a few days, but I'm back to feeling like the old Lori again. That hospital stay took a chunk out of me in terms of stamina and well being. But Amen, I am healed again and feeling good.

The weather has been fantastic and that helps, to see the flowers blooming and to hear the birds singing...it helps make your mood happy. It's Easter!

Easter is all about new life. 

Jesus defeated the forces of death.

Without that event, I would not be assured of my salvation. You see, Jesus had to die for me and You, and rise again in 3 days, for everyone to have a shot at living in Heaven. Easter is not about the cute bunny's, but we have forgotten the true meaning and what it represents. On those darkest days when I think CF is winning, and I allow my mind to think about dying and going to Heaven, it all comes back to the Christ on the Cross, that makes my eternity in Heaven a reality. Amen and Thank you Jesus for dying for me, a wretched sinner who knows You laid your life on the cross for me. Now that's a gift everyone can receive. Christ is risen. AMEN

CROWN HIM WITH MANY CROWNS
Crown him with many crowns,
The Lamb upon his throne;
Hark, how the heavenly anthem drowns
All music but its own!
Awake, my soul, and sing
Of him who died for thee,
And hail him as thy matchless King
Through all eternity.

Lungs for Tricia!!

March 3

My CF internet friend Tricia received her new lungs early into this morning!

Her husband Nathan blogs about it here, so read it for yourself:
http://www.65roses4pattysue.com/

Tricia is NOT all OK now. This now begins a new period of intense pain, adjusting and rehab.

Her body has to accept these foreign lungs by not killing Tricia.

Tremendous amounts of medicine will be at work to trick her body into not rejecting the new lungs, and the side effects are horrible, but the pay off is being able to breathe! This is what was prayed for.

At the same time, a courageous family must plan a funeral.

Please keep them in mind. Anonymous they are to us, but known by their courage in gifting life to others.

Thank You donor.

Thank you Jesus for the testimony to YOU this will bring.

Thank you for the doctors at Duke, who have the skill to do this delicate surgery, and for the CF specialists at Duke who care for us.

Spring has sprung anew. What better gift than a new rebirth at life for Tricia!

Our God is a Mighty God.

Late Entry

Another adult with CF in my community died recently. My friend Shannon called me to tell me today. Shannon and Dale were frequently admitted to the local kids hospital here and were in and out all the time. They both went on to Duke, hoping for lungs. They both had their prayers answered. Dale had to be relisted for another set of lungs and got them. She then needed a kidney transplant, and got that too. But that takes an awful toll on your body, and Dale ran the race and won. She got her crown in Heaven.

Lori's closing thoughts:

A real difficult aspect of living with CF isn't the multitude of medicines and the deterioration of your quality of life, but rather losing the dear friends you have come to know and love who share CF with you.

Tuesday April 15...

This is the day which the LORD hath made; we will rejoice and be glad in it.  Psalms 118:24

A local girl in my neighborhood, died.

She too, had Cystic Fibrosis.

A few years ago, Emily's parents came to my house and we talked about lung transplant.

We shared our stories and hopes for what would be a new chance to breathe normally.

Their family is a strong Christian example of walking by faith and letting the Lord call the shots.

I am sad for the loss of their dear young Emily, but as Born Again Christians, we know we will forever be in eternity when we die and we'll see Emily again, running, jumping and reading, all without

CF and no coughing. That promise gives me great strength with my own struggle each day.

Our community rallied around Emily and raised half a million dollars for expenses not covered by their insurance.

They would have to move to St. Louis and that meant a lot of money would be needed to fund travels and housing.

Emily died yesterday. She never made it to St. Louis. Apparently, she was still too healthy for new lungs.

This article was in our local paper.

Chesapeake girl loses years-long fight with disease

By Mike Saewitz
The Virginian-Pilot
© April 14, 2008

CHESAPEAKE

Emily Haley, whose battle against cystic fibrosis led the community to raise $500,000 for a double lung transplant, died early Monday. She was 14.

“She fought this hard until the end,” said her aunt, Patty Grimes.

Family members said that Emily was doing well until a few weeks ago. "She started needing more oxygen at home and we knew we needed to bring her in Monday and on Tuesday the big downturn started happening."

An infection, which her father says Emily easily battled before, was taking over. After three days in the hospital, Emily was put on a ventilator. "She squeezed our hand a few times when we talked to her, but for the most part we were not able to communicate."

“Things took a turn for the worse,” said her father, Bill Haley. “She couldn’t fight an infection.” She died at Children’s Hospital of The King’s Daughters in Norfolk, Virginia.

Over the past two years, the condition of Emily’s lungs had not deteriorated to the point where she needed the transplant. A recent evaluation showed she was 6 months to a year away from needing it. 

If she had beaten the infection, she could have flown to St. Louis, Mo., for the operation down the road, Bill Haley said.

The community in 2004 got behind Emily after a thief stole a canister of donations for her transplant from a Chesapeake sub shop.

After media attention generated by the theft, the Emily’s Breath of Hope campaign raised more than $500,000 in just seven months.

The money raised through auctions, raffles and benefit concerts will now go toward the Children’s Organ Transplant Association to be used as matching funds for other transplant operations.

“Our family can’t thank the community enough,” Grimes said. “They saw a little girl who needed their help.”

Bill Haley wanted to ask one more thing of community members: to become organ donors.

Emily enjoyed being with her 12-year-old sister and twin 11-year-old sisters.

Despite being diagnosed with cystic fibrosis, which made it difficult for her to breathe, Emily wanted to dance and play soccer like her sisters. And she did.

“She never wanted to let CF keep her back,” Grimes said.

Although cystic fibrosis had damaged most of her organs, her corneas were donated so that 2 people will be able to see.

"She loved to read. That was one thing she loved to do, and her eyes get to continue to read on in the people who get them and I think that will be her legacy. I hope people will donate their organs," said her mother Ruth.

Wednesday April 15...

This is the day which the LORD hath made; we will rejoice and be glad in it.  Psalms 118:24

Years ago I decided that I would start every morning with saying this Bible verse.

In the beginning it really seemed like a chore…especially on the days I knew there were some unpleasant things that I was going to have to deal with.

Over the years however, I have finally grown to the point where I truly appreciate everyday that God Blesses me with.

I would like to say that I just grew up and perhaps Spiritually matured all on my own…but that wouldn't be the truth.

There is something about living every day with a nasty disease that will cause you to seriously re-evaluate your life. (I have a new found respect for Job in the Bible)

Throughout all of the things I have faced and experienced... there has been one constant…and that has been God, true to His Word, He has never forsaken me and He has never left me on my own.

In fact, because of the things I have faced living with Cystic Fibrosis, and survived…I can clearly see that the only reason I’m still standing is because of Him (literally). God. Jehovah.

One day, I'll be face to face with Him, and there will be no tears or weeping.

I'll be the happiest I have ever been. Forever.

Like Emily is now. And Dale and Chad before her, and Wade Hello too.

Because as born again Christians, we are promised eternal life.

Now that beats even my best day here on earth!!

Last night at 7:45 PM, I was watching TV when my eyes caught a glimpse of movement in our backyard.

A herd of Deer!

9 of them, grazing on grass and some corn that I threw down the day before.

It was so awesome to see them pass through our yard and quietly blend into the bushes.

Quickly, they were gone. I was blessed to see this and I felt all warm and fuzzy that God allowed me to see His creation in nature, right in my yard.

Then about 10PM, Brian calls me and asks me to come to the kitchen to see this racoon eating at the back door.

Our cat Tucker was on the inside of the door, and saw the "Racoon" stealing from the bird feeder.

As soon as I saw the retched animal, it was horrible. It was a mangy, rotten, sewer looking Possum.

His rat like tail was at least 16 inches long and was exactly like a rats tail. He was missing patches of fur, was mangy and dodgy, and a poor creature.

He waddled through my gardens, eating off the heads of my Petunias, and then found another bird feeder 200 feet away.

He was the ugliest creature (next to ANY snake) I have ever seen. YIKES!

Only a mother could love it and she'd have to be blind (A favorite saying of my mothers).

You never know what's in your yard when the lights go out.

So about me....I am feeling well and doing well.

I am doing a boatload of things to keep well, and that makes me tired (doing all my treatments), but hey, I am alive and not dead--yet.

I think of Emily. Did she know she was going to die?

Did they sedate her before she knew how sick she was?

I hope I am aware and know I am going to die, when it happens.

I think God sends an Angel to take away any fears and anxiety when you die, because God does not want us to dread dying and have horrible thoughts, so I think there might be some calm and peace that only death can bring. I hope so. I hope I'll see my Angel close by my side, whispering everything will be positive and not gloomy and sad.

I'll think about that...about the millisecond transition from earth to Heaven and the excitement that a Christian believer must have, to be going to Heaven.

I just know it (the act of actually dying) can't be terribly horrific.

My Angel will be there to guide me.

Hours later it came to me....I KNOW I will not fear death. Why?

Psalms 23, verse 4 assures me so when it says..." Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me;..."

There it is!

Plain English for us to read. I WILL FEAR NO EVIL.

I won't be sad or anxious when I die, because God is with me. Amen!

I have kept busy by spending time in our backyard fixing things and gardening a wee bit. I hate worms so I don't plot big messes in the garden. There is always something to do or fix, so when the mud is not too mucky, I am out there tweaking things.

I am not a real gardener like my sister Dolly is. I just do the easy things.

I am preparing to spend a week with my sister Nancy.

She is sister#3, and we are going to Disney for some serious Sister time of bonding and fun.

I need some precious time with Nancy because should I die before her, it will really effect her.

So we will have fun, happy memories all the while keeping up with my CF routine at Disney.

Oxygen has been arranged, a Jazzy scooter too, and even a dinner with friends who run a CF pharmacy in Orlando that I know.

What a fun time. Sisters being kids again, and laughing and loving. Happy memories.

Brian? He stays home with the furries.

Speaking of my husband and sweetheart Brian, his birthday is this Saturday.

Plus our 10th Wedding Anniversary is on Friday.

I can't believe I have lived 10 years.

I can't believe I have been married to Brian for 10 years.

I expected to be dead before now. Everyone did.

My parents told Brian I would not grow old with him and would not live to 65, so to love me or leave me BEFORE he walked me down the aisle.

It scared him- taking on CF, but not enough to get cold feet.

He hung in there.

I nearly died 3 times (so far) on him, but still, Brian is with me till death do me part.

10 years of being so very blessed and happy.

Happiness is secondary in life, next to Salvation.

If you're not happy....every day sucks.

I am very happy.

Can I have another 10 years, O Lord?

This is our Engagement photo.

Today, Friday April 18...we celebrate 10 years of marriage

This is my love story of thanks to the one person in my life who keeps me happy.
No…it's not God, not for this story.

Next to God….it’s my husband, Brian Hughes.

We are celebrating 10 awesome years of loving each other and of living with Cystic Fibrosis as the silent mistress in our marriage.

My husband Brian, has been there for me through it all. From coughing up blood from my lungs, to having a seizure on the bathroom floor. From fevers of 103 degrees, to chills, rigors and sweats. Thick and thin. Actually, sometimes pretty thin. How do I know he loves me? Take the time when I am so sick of puking and barfing that he attempted to do the laundry all by himself, while I slept in bed with a fever of 103. Or the times he has stayed by my hospital bed when he thought  I was going to die from multi-system organ failure and sepsis, during a family visit to Disney World. Or by getting me through another nasty viral infection just before Easter. All the missed parties, socials and holidays just for hospital stays... not to mention basically living at hospitals for weeks at a time,  missing work and visiting me on weekends too, all because he loves me. Sometimes I wonder that if I were the healthy spouse, would I hang in there at his side as he does mine? Would I give up my weekends to be at the hospital for moral support? Could I, would I, do for you what you do for me?

He makes me want to be the best person I can, and tries to help me bring that person out.

We want time. More laughs. More tears. More hugs. More blessings. Time.

People don't understand the anxiety involved with being married to a chronically sick spouse, like someone with CF. Especially someone like me, who is so matter of fact and in control about my CF issues and problems. One particular time comes to mind when Brian was at work and I called to say, "um, my throat hurts and my temperature is 103°. I don’t feel well. I’m going to e-mail Duke for advice." Later that same hour, Brian came home, paged Duke, spoke to the CF Nurse Practitioner, took me to the ER, where I needed to be. That’s real concern…and love. Thanks Brian.

These are a few examples of living with CF. You never know when the CF beast will strike or what will happen next. And for a guy who likes order in his life, he deals with the chaos of me being sick all the time, well, pretty well. He doesn’t curse when I manage to ruin his Saturday, or call me a nasty name under his breath when I ask him to stay home with me, fearing what will happen if I am left alone. CF is sneaky. You can be very sick and then dead.

Brian is truly amazing. His protectiveness of me and love are a constant. Brian is my soul mate. The man God made just for me. He was made so he could be my helper, caretaker, husband and friend, as we navigate the road CF deals me. Now if that’s not Love, I’ve missed something in the last 10 years. But I know it is. So bring it on!

My sister asked me could I believe I’d live 10 years married to Brian? And I said 10 years ago, the answer was “NO”. I just wanted someone to love me before I upped and died. I never expected to fall in love, because I was “damaged goods”. Only my parents loved me to the nth degree. Certainly no man would. Or could. But that’s when God brought Brian into my life. Via the internet, he in North Carolina, I in Toronto, connected. Wow. What a cyber journey that was. God lead me husband to me via the Internet. It’s now 10 years later and we are still happily in love, and still married.

10 years to grow in Love with God, to see His work in our lives and to thank Him for blessings every day….even the bad days. I have come to understand that God does not waste pain. Funny idea. God does not waste pain. He uses pain to draw me nearer to his heart, to bring me to my knees in prayer, and to lift me up off my knees to rejoice. God does not waste pain.

Here's to 10 more years... and best yet, eternity with you, Brian Hughes.

Love Your Wife, Lori

Tomorrow, it's Brian's Birthday! Yeah!!

Friday April 18...

Yesterday, I showed up at Brian's office bearing a birthday cake and a sandwich tray. He gathered a few colleagues and we sang him Happy Birthday and ate. It was fun for a dull Friday afternoon and Brian was tickled pink I'd done it. He was a bit embarassed at the attention, but then smiled and appreciated the thought. The sandwich tray was gobbled down right quick and the cake lwft no crumbs for even a mouse. OK..more later as I have to scoot.

Sunday April 20...

Brian had a good birthday celebration. Today, we had afternoon lunch with his mother. She made a wonderful meal, as usual. We had some stern discussions about funeral plans and stuff, and like almost everyone I know, they think if they talk about death and dying, they ill die soon thereafter! Let's say it was not a productive talk and feathers were rumpled. On the way home, there were 2 cars ahead of us on Johnstown Road. That's our street, and it runs for about 8 miles. 2 miles from our door, and 2 cars ahead of us, a SUV ran over a racoon. I eeked out in sadness, hoping it wasn't all squished. The second car passed right over it and by the time we slowed down to an almost stop, the big critter was dead. Playing dead. Then it got up, straggled, limped a little, and slid down the right gutter embankment, alive, maybe bruised and bumped. I was elated it was not dead. Squished dead. All 4 limbs worked and it carried itself off. "Amen", I said. "Please don't let that racoon die, Lord", I prayed.

Why cry over just an animal? I am NOT a PeTA member and hate their goals and tactics. Yet I have a fondness for small animals (not all of them, though). I just didn't want to see this racoon dead. So Lord, Thank You for keeping your hand on that racoon. Since you care enough to feed the little Sparrow, imagine how much more you must care for ME.

Monday April 21...

Tonight, I received a precious email from a LONG, lost friend. I had last heard from Pam around Christmas, when her Christmas card arrived. Then Pam left a voicemail when we were out one Saturday. Silly me for not having her email address or mailing address. So just yesterday, I replayed her phone message that I'd saved on the voice mail in January and then I asked the Lord to allow me to get into contact with Pam again. God must have super fast, high speed T2 email because my prayer was answered tonight.

My IN box had an email from Pam. Could it be "THE PAM"??

YES.

What a blessing to hear from my dear neighbor.

Pam and I both are addicted to cats. She likes to say she has 10, but really, has devoted 16 years of love to Belle and Bouncer. 16 YEARS!

Her sweetheart felines know their routine down pat, and Pam can read them pretty well too. She knows when Bouncer is not feeling well, or when Belle has a tummy ache.

We chatted via email and it was soooo good to hear of the blessings in her life.

Pam moved to Utah, to be closer to family, and along the way, had a brain tumor.

Surgery to remove it was successful, but she still has 2 years to go until she will be considered "cured".

But what a blessing she has been to others with her positive Christian influence.

I wish we were neighbors again. Moving away has made me love her more, for longing makes the heart grow fonder.

Pam is happy out West and takes life day by day.

She marvels that with my end stage CF lung disease, I still manage to travel when well.

It's just that I can't be cooped up when there is yet, much to see. I have to go on adventures before I die, cuz it's all downhill when you die.

But then the biggest travel and adventure I'll ever take, will happen when my soul goes to Heaven.

Now that's a palace AAA can't book you into. But God can. And He takes reservations 24 hours a day, 7 days a week and never closes for holidays either.

Good Night and Sweet Dreams

Thursday May 8...

I went on a trip.

My sister Nancy and I went to Walt Disney World in Florida for a week.

We had a grand time!

We stayed at the Grand Floridian Resort on their Royal Palm Concierge Floor and being right in the main building with concierge level services and food, made it easier for me to get around.

Everywhere I went, oxygen went with me.

I rented a Jazzy chair scooter for the week and it allowed me to spend up to 6 hours in the parks on 2 tanks of liquid oxygen.

Then I'd scoot back to the room for a nap and oxygen refills, and head back out for dinner and late nights.

The Magic Kingdom was opened until 2AM one night, and Epcot until 1AM.

Nancy is my third sister, called #3, and she lives outside of Toronto. Her flight down to Orlando was delayed due to a medical emergency, but with running hard, she made her

connecting flight and I met her at the gate in Orlando. Then the fun began!

We did 3 behind the scenes tours and Nancy was thrilled with them and could have done all of them (there are 11).

We did Keys to the Kingdom (6 hours), Epcot Behind the Seeds Garden Tour (5 hours), and Animal Kingdom walking tour (4 hours).

All our meals were included so it was easy to eat, as long as you had reservations.

We had a wonderful time at the Epcot Garden & Flower Show

The whole week I rested and took care of my medical needs, so there was not any emergency or calls to Duke. Amen for Brian as he worries so much when I go off without him.

He was once on the other end of me being very sick in Florida and having to air ambulance me home back in July 2002.

Been there, done it. Got my Air Ambulance pin.

So Nancy and I also factored in a few Spa treatments. We had a Manicure and Pedicure day together, then Nancy went back and was treated to a massage and facial a few days later.

We both needed some pampering, so we indulged and were treated royally at the Grand Floridian.

Nancy had her nails done, painted, buffed and polished, and she looked so well and happy after the Spa days.

Her skin was so very soft. She was treated like a Princess.

I bought a number of collector pins for friends and family, and really enjoyed the afternoon Banana Bread at the Royal Palm concierge lounge.

We rented the Water Mice boats and went zooming around the Seven Seas Lagoon!

We had a wonderful time boating all over the lake but Nancy was a little leery of the BIG Ferry's that crossed our path.

She did great!

We also met up for dinner with a friend of mine. Bev is the founder and director of a CF mail order pharmacy in Orlando and is in the online CF support group I am a member of.

We have known each other for about 10 years. Her grand daughter also has CF, so Bev is front of the line when it comes to CF knowledge.

We had a lovely dinner at the Portobello Yacht Club at Disney. It was wonderful to meet up with Bev, who is very busy and often out of town at conferences.

Then Nancy and I went to the Circus.

Cirque Du Soleil at Disney.

It was cool but didn't wow me as much as it did Nancy.

Been there, done it. No big deal.

What was WOW was Fantasmic. It's a night time show spectacular at the Hollywood Studios.

It used to be called MGM Grand, but Disney was sued for using their copyrighted name and after 8 years fighting it out in court, Disney dropped the MGM Brand part and

renamed it Disney Hollywood Studios. So any pins with it being called MGM Grand are now a collectors item.

The Fantasmic light show in the dark of night is awesome. You should not miss going to it. It's free with park admission. Go.

So after a week of being catered to and fed well, we had to pack to go home.

My flight was a cinch, but Nancy was threatened at her stopover that she was being left behind as United had overbooked. They needed 5 passengers to stay behind, and NO WAY was Nancy doing that. Besides, I bought her ticket 3 months in advance and she was at the airport 4 hours ahead of check in, so she was NOT going to be dumped. She spoke up, used her small voice, and got on that plane. What a moment for her...Holding her hostage to not getting home and saying she was going to have to not fly home that night. BULL. So United Airlines SUCKS.

Nancy did make it home, but she was mad at them for overboooking the seats. United Airline Sucks.

But we still had a Grand time and I was well. Amen!

Monday May 19...

I was just now at my computer when I heard  a loud THUD at the front door.

I got up to look and I saw a bird, laying on the ground at the front door, stunned.
Really stunned. The cats were chattering at it, wanting to go get at it to play.

His eyes were focused straight ahead and he did not move.

"Is he dead?", I thought.

I watched him from the other side of the front door for a long time, and he did not move.

So then I went to the kitchen to put on my gardeners gloves and went to the bird outside.

He was stunned. His beak was splintered on the tip.

He had blood in his mouth and beak.

I gently picked him up, spoke softly to it, and moved it to another area away from the front door.

I rubbed its black feathers and then went inside and brought the bird a dish of water and bird seed.

He was not interested in either.

I prayed "Dear Lord, plezse don't let this bird die".

Then I turned my back to take an empty bird feeder off the nearby tree and refill it inside the house.

I came back 5 minutes later with a full feeder and hung it back on the tree branch and went to find my feathered friend.

He was GONE!

He had flown away! My precious bird was flying.

To be sure, I looked in the bushes to see if he was hiding, preparing to die.

No bird.

I then said another prayer of Thanks that the bird was alive and able to fly away.

Oh what joy I had!

A little miracle like that today made me so grateful for this bird.

Thank you, little bird, for starting my week off in prayer.

I am so humbled by this small miracle.

I also have some nasty Poison Oak (again!) this year.

Last Tuesday evening, I went and pulled over 100 Dandylions from my yard and as I was careful to only pull Dandylions, I did not wear gloves.

Well by Wednesday evening, I was swollen with itchy ivy scabs.

Horrible stuff. I hate poison oak and from now on, will  never ever pull any weed without gloves on. Period. Lesson learned. Ouch.

Gotta go put more Calamine lotion on for the itching!

Love Lori  xxOOxxxOOOOXXX

Friday May 30...

The birds in my backyard continue to amaze me with their show of beauty and their behaviors.

They LOVE the bird bath and I get much joy sitting in my room, watching them preen and fluff their feathers while flopping around in the water.

They especially congregate around 4PM to 6PM.

I went out and fed them a whole bowl of meal worms and then watched.

What a party they had!

It was a 'Bird Buffet' at it's finest.

They love the live meal worms, and some grab just one, while others grab a beak full and fly off to a branch to eat them, then come right back for more.

In other news...

I am heading to Duke on Sunday.

The CF Nurse Practitioner is a real sweet woman who really vouches for her adult patients.

Well, she called to say "Come on Down!". The CF floor has a bed for me on Sunday afternoon.

We go to church in the morning, then head down to Duke. It's a 4 hour drive. We always try to stop at Cracker Barrel before I have to be admitted.

This is a straightforward tune up for me. Nothing unexpected should happen.

I need a whopping powerful hit of IV antibiotics to combat the nasty CF bugs in my lungs.

This is how we have to do it as I no longer have veins to support home IV therapy.

I am looking forward to it actually-- so I can feel better!

I'll take my laptop with me so you can touch base via email.

Love Lori XXOOoooXOXOOXxxo

Sunday June 1...

Me…

Monday June 2...

I am here, back at Duke, and now the treatment begins.

Too bad for me that Dr. Kussin is not rounding this week here on the CF floor.

However, there are other nice docs who do this for him.

I was glad to see Dr. Kussin come visit me this morning...just to see how I am doing.

It was more likely the result of a bet.

He was told I was not looking very pink, so came in to see for himself.

He told me he lost the bet, that I was a tad bit blue, and to jump on the vent and rest up a bit. Done.

With coughing a lot, my chest gets so sore, so I tend to hold in the nasty sputum and that allows my oxygen sats to drop a little.

This hospital is buzzing with secret service men. There is a Kennedy here at Duke.

As he now has a brain tumor, Kennedy has come to Duke as it offers his best hope for treatment. Notice I did not say "cure".

Anyhow, there are media tents set up across the street and it looks like a circus is in town.

I am residing in the "CF Cootie Corner" in room 7813.

There are no other adults with CF admitted currently.

Perhaps you'd take a minute to send me an email.

Click here and compose....

Send me a Duke eCard

Brian is holding down the house and taking care of the pets and Sugar Gliders.

He is very capable of keeping the house functioning.

My CF pal in Idaho phoned me today to see if I am still alive.

Laird is a very cool friend who is a Duke double lung transplant miracle.

He was in his 50s when he was transplanted, which is an age most with CF never live to see.

His wife is a Registered Nurse, and she was with him all the way through thick and thin. Go Wynne!

I am going to get up now and go for a walk. I've been cooped up all day (on the vent) and need to walk a bit.

I welcome and appreciate your prayers.

Get this...my friend Tricia was in this room before me.

So you know this is a very well prayed in room.

Miracles have happened in this room for Tricia, so I expect the same!

Go Tricia, and Nathan, and Gwyneth.

More tomorrow.....Love Lori  XooxOOXoxooo

Wednesday June 4...

From the pages of Our Daily Bread:  "Growing old is a blessing when you’re growing closer to God."

"Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the LORD shall renew their strength;

they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint." Isaiah 40:30-31

I did not feel like writing anything yesterday. I was too sore and not well.

I did however, receive a blessing.

I went to the Radiology OR for a line in my groin and after much prayer, on the first try, it was a wonderful hit. They got is so easily!

Little pain, no fear, and done right by a skilled Vascular Surgical Resident. Amen for Dr Ken and for the team assisting him.

And also for Wynne and the gang at St. Al's in Boise Idaho who covered me with their prayers.

Wynne's husband is my CF pal named Laird. Laird tracked me down at Duke and called just before I was to go down for the line insertion.

He knew how important it was to get it done right the first time, so he asked his wife to pray while they were driving.

Their prayers were answered and I was blessed again.

Every time I wonder if they will get the femoral line in. And when there comes the time they can't, I am mentally prepared for that too.

I am still SOB (short of breath) and coughing a lot. The ventilator is triggered by my constant coughing. How did we used to do it at Norfolk General?

Easy....they sedated me. Knocked me out so I could not fight or trigger the vent to alarm. Good trick. It worked.

I received wonderful email from most of the awesome folks at the office and from a few friends who read this web diary of mine. Thanks.

I did not walk much today as I am still too junky and SOB. Tomorrow.

I am getting Vancomycin IV, Tobramycin IV, Levequin pills, Doxycycline pills (both pills are antibiotics),

and more time on the vent. It sure is slow to work and turn me around so I feel better. It will happen. More time to sit here and wait.

Thursday June 5...

I am fearfully and wonderfully made

I believe with all my heart that God gave me CF on purpose. His purpose.

It's been said that "God didn't give me CF (or whatever disease you have), He only gives you the strength to get through it."

I respond to that with the deep philosophical term known as, "Baloney!".

The God who knit me together in my mother's womb did not fall asleep on the job while He was fashioning my 7th chromosome.

My God did not forget to give me a perfect set of lungs by mistake.

To think otherwise is to belittle Him.
So is He just mean? No.

Ultimately, I believe these trials will be for my good--both in this life and especially in the life to come.

One day, I'll be sitting up in "My Father's house", talking with Him about my life.

He may ask, "So how do you feel about that CF thingy I gave you?"
I will reply joyfully, "It was a true blessing that I thankfully will have all of eternity from which to benefit. The character it produced in me allows for me to enjoy heaven all the more fully."
Pie in the sky? Well, actually, I prefer cake. And one day I will eat it, too.

Love Lori, still at Duke, enjoying the HOT weather here in Durham, NC.....XOoxxoo

Friday June 6...

every day

...His mercies never come to an end.

They are new every morning.

Lamentations 3:22-23

Quote for Today

Everything, absolutely everything, has to do with God. All things are from him and through him and to him. Therefore going to school is from his design of human thinking, through his gift of life and breath and motivation, and for His glory.—John Piper, A Godward Life, p. 152.

Monday June 9...

Romans 12:12

Rejoice in hope, be patient in tribulation, be constant in prayer.

I did not have a good weekend.

The pulmonary attending doctor was surprised I looked like a smurf.

I was evidently cyanotic, and I felt it.

My weekend was spent in bed, more on the vent than off, trying to allow my chest to rest from over working just to breathe, while hoping the IV antibiotics would garner me a "hit", so I'd feel better.

Nope. Not yet.

This morning on rounds, the team agreed I have not made progress, and had a team huddle to determine what to do next.

Thankfully, Dr. Peter Kussin was called and he came to see me.

Now this is NOT his week to be rounding on inpatients, but he came. Amen. Thank you Peter.

He also agreed I sounded very "junky" and we talked about it.

Seems my superbug MRSA is pulling all the tricks in its bag and being very difficult to eradicate.

So after whipping my lungs with Vancomycin, Tobramycin, Doxycillin, Levequin and inhaled Tobi, we will now make changes to this routine.

Time for the BIG GUNS!

They will drop the Vancomycin and start Tigecycline today and also drop the Doxycillin and wait and watch.

I was not getting better on the IV cocktail we first tried.

Usually, by day 5, I am so much better, and my physical exam shows I am responding.

Today is my 8th day here at Duke but only the 6th on this antibiotic cocktail and nothing favorable has happened.

This happens with CF bugs. They are smart bugs and can mutate and grow resistant to the antibiotics used to fight them off.

I've been at this point before, as Dr. Kussin pointed out to me today. Once before, we were at this same standstill, so we reassessed options and changed meds. It worked.

I am not "scared" right now because we have options.

However, it is not a position that is good for me, to not respond to the antibiotics.

Been here before, done it, got better and went home.

I expect no less.

My sister Dolly called me yesterday and we had a wonderful chat. I love it when I hear from my family. Seems in Toronto too, they are having a heat wave. It was 38 C there this weekend, and at home and here in Durham, it has been 100 F for 4 days straight. Relief is in sight on Wednesday with afternoon showers. How lovely it would to be at home floating in our pool.

I've received Duke email from Roy & Marjie in England, everyone at my office in Norfolk emails, Dale Price dropped me a nice note, and I've had phone calls from Laird in Idaho everyday. Thank you all so very much for thinking about me and making the effort to email or call. Something as trivial as doing that sure brightens up my day here. I am very thankful you have reached out to me.

I did ask the nurses to loan me the DVD player this weekend and so I was able to watch many movies. I still have more to go. The TV channels here are not much more than the basic offering plus a few others, but nothing like you can get at home. But hey, this is not a luxury resort. You don't come in to the hospital for the cable TV line up. But the DVD movies washed away some of the boredom. I remain on isolation due to my Superbugs but that is not new. At least I ALWAYS get a private room every time.

When I am ready to be discharged home, I will be thinking ahead to returning to work as I have committed to taking some days at the end of the month. What joy that will be to be able to go back to doing the job I love doing! Well, I'll close here, as I send my love and ask for your continued prayers for my healing and return to wellness. Also keep Brian in your prayers, as he worries when I am this far away from him and he can't be here to help me as easily as though I were at Norfolk General. I LOVE you all,   Lori   XXOOooXOOXx

Click mailbox to send Lori a Duke "Get off your butt" eCard

Tuesday June 10 (nearly midnight)...

I might be a SMIDGEN better today but it's not by a big leap or bound. I am nauseated by the smell and look of food, and declined my 3 meals today. Just the thought of food made me sick. This is new to me. Y'all know I am plump, and I didn't get that way by missing meals. Tonight, I barfed a few times, but it was just pure bile. No food in my guts to barf out. I called for, and received an IV injection of anti-nausea medicine. Perhaps this new symptom is a result of the new IV antibiotics I just began 2 days ago. I have now received 4 doses of it, called Tigecycline (Tygacil).  I googled this med and found that...... The most common side effects with Tygacil are nausea, vomiting, and diarrhea. Sounds exactly right for me, except the diarrhea hasn't started YET.

I napped for 3 hours today on the vent as my nurse commented that I looked a "tinge blue" and she thought time on the vent would help. I slept well, and I needed the uninterrupted sleep very much. The heat wave continues here in the South with Durham getting to 101 degrees F without the neat index added on. Brian said it was painfully hot at home too, and even the birds were seeking refuge from the heat. The bird bath was quiet as it was too hot for them to splash around. The heat wave will move off shore tomorrow and get cooler. My friend Laird in Idaho said it was a cool 46 degrees F today and he had to stoke a fire inside for warmth. This for early June!!  Believe me, it's got nothing to do with the fallacy of Global Warming, which is nonsense.

Time to get to sleep as it just turned into Wednesday and I need to get on the vent and sleep. Thank you for your continued prayers for Brian and I. The blessings continue.  Love Lori oXoxOx

Wednesday June 11...

every day

The steadfast love of the Lord never ceases.

His mercies never come to an end.

They are new every morning. y morning.

Lamentations 3:22-23

Good Morning....the pulmonary team rounded on me today and we have a new game plan.

I have been so nauseated and vomiting green bile and that makes me NOT a happy camper. So we discussed this and decided to stop the wonder drug Tygacil. We will re-start the Vancomycin IV antibiotic to go after the MRSA bugs and then add Fortaz for the apparent Pseudomonas bugs. Add some Septra too, wait and watch.

They told me this means I am not expected to be discharged next week, and I piped in that I want a full 14 day course of the right antibiotic cocktail before I am sent home. I need the maximum hit from this cocktail to allow me to have the longest time outside  the hospital, and to do less only harms me. It would mean coming back in too soon and hoping and praying they could find my femoral vein for the triple lumen IV line, and that is NOT something to play around with. So I have no issues with staying longer than anticipated as long as I am getting the best therapeutic benefit from the IV meds and feeling better. A plus to staying longer is that my CF attending doctor IS rounding on the CF patients starting next Monday. Yippie!! I'll have the benefit of having Dr. Peter Kussin calling the shots and checking in on me every morning. What a good way to end a tune up.

This is my nurse Lindsy. Duke has Hot nurses (for interested single MALES). Go Lindsy! She takes good care of me and has a brilliant smile.

My friend Tricia is here at Duke for some tests, and might be admitted to this floor today. Tricia and her husband Nathan are the couple I blogged about at the beginning of 2008 who needed a miracle...and they got it! Now some issues are bringing them back to Duke. We are usually just doors away from each other. Nathan will visit me if Tricia is admitted. Cool. This morning, was dedicated to praying for them.

Check them out:  Confessions of a CF Husband

Brian is running the house at home for me. He wants me home soon! He is a great trooper at pulling together when things need doing and I can count on him to get some chores done. Like refilling the bird bath and the bird feeders, bringing in the newspaper and mail, and stuff like that. I miss you Honey!!

Thursday June 12...

Dr. Kussin just rounded on me. Awesome to see him again and he was right up to date on what's been going on with me.

The bottom line is that I might be here for another 10 days to get the maximum effect from the new antibiotic regimen I just started yesterday.

That's OK by me because I need a real wallop for my money when I leave.

I have to stay out as long as I can so that means having a great tune up and sending me home.

Being a "bounce back" patient is disappointing. It means the last stuff you did did not buy you that much time on the outside.

My hopes have always been to have a good, beneficial tune up and then go home and pray I can stay out for 8-10 weeks, feeling better.

Some times, I only last 7 weeks and have come back, but when I get 8 weeks out, I consider it a success.

I am now watching "Finding Nemo" on TV. I love that movie. Most of the Disney Pixar movies are hilarious and I enjoy them too.

So today is day 12, with another 10 to go. Then home. Amen for this new game plan and for the Duke team who have worked hard behind the scenes to collaborate on my care.

More later. Love Lori

Friday June 13...

Today is day 3 of the new antibiotic plan. Too early to tell if I am benefiting from it, but certainly the increase in Prednisone has helped. I am hungry constantly and have a few zits on my chin, all side effects of Prednisone, yet it IS allowing me to breathe better. This weekend will be spent just sitting around here, getting the benefit of the antibiotics, and chilling out. The TV has a movie channel, and I have watched some good movies these past few days. It helps with the boredom. Thanks Duke for this movie channel. (Channel 98 for English, 99 for illegal Mexicans hiding here who don't speak English).

I was bored today so I hung up a t-shirt I made in Photoshop. It says "Got CF?" and has an xray of lungs with 2 band-Aids on them, plus a bunch of pills in the stomach. Cool.

It is printed with the same image on both sides. Here is my nurse Jill showing it off.

I have 2 CF friends in the house now, here at Duke. Bill is a few doors away and his wife rooms in with him, and Tricia is down the hall, while her husband Nathan is with her too. We all know each other through the internet. Nathan just dropped by as Tricia is napping. We had a good visit. Here we are at my bedside.

It's a beautiful day here in Durham. Gone are the 103 degree days of last week. Whew. It's just 88 degrees F now, so much cooler. I asked Brian to stay home this weekend and not drive the 400 mile trip because I'm not doing much aside from walking laps on the floor. Boring. It's not like we can go out for dinner or something, so not to waste his time and instead, do some chores at home for me. Reluctantly, he grumbled OK.

I'll end here and get some other work done. Email me. I'm sitting here just breathing.

Love Lori XoOXoxxo

Saturday June 14...

The weekend doctor who is covering just rounded on me and I was NOT impressed. Nice looking, yes, but too cynical about my care. Questioned why I am on so much oxygen and why I am using a vent. Duh. End stage lung disease due to Cystic Fibrosis. They don't put a hole in your neck to breathe if you are "fine". I told him I have night time de-saturation as I sleep (Nocturnal Hypoxia) and he said a trach should take care of that. Well after 6 years with a trach, it hasn't. So leave my vent alone and don't play with my oxygen set up. Nuff said.

My weekend day nurse is Will. This is a nurse I really like. It doesn't matter what cooties you have, Will will still always hug you. He is not about shoving your cooties in your face, and I love his dry humor and wit. Thanks Will.

It's a cloudy day with the temp reading 88 degrees F now. Hazy too, from forest fires burning north of here. Brian said it was worse at home.

Brian enjoyed a dunk in the hot tub last night. The temp was 103 degrees and he said it felt so good to be using it.

I am looking forward to getting home soon, maybe in a week or so. I am feeling better today and not having as much thick, sticky sputum. Amen for this. I am walking further each time and have no doubt I'll be home soon. Today is Day 4 of the changed antibiotic trial which appear to be working. Another Praise! Finding the right IV cocktail can take trial and error. This time we erred, but now we are going to take off and progress quickly! Expect another miracle. This is, after all, DUKE.

Sunday June 15...

I. am turning the corner! For the better, I am now making progress. Amen for prayers and the right antibiotics. Today is day 5 of the cocktail I was switched to and it is the right thing for me. Perhaps my next tune up will take heed of this victory and start off with the same cocktail, which would save precious time. We'll have to see what my CF bugs are doing just then. They are smart, and they mutate in response to the antibiotic burden placed on them. Smart buggers! That flaky doctor yesterday came in and assessed me again this morning but I did not allow him the luxury of lingering or prodding too much. He just rubbed me the wrong way yesterday. Anyhow, my nurse during the day shift was Will. A real character, he is. I love him to bits for his wit and humor, plus his knowledge too. He prays for his patients. Bring it on and Thank You Will.

Another beautiful weekend here at Club Duke. Sunny skies and a warm summer temperature flooded my room. Not too hot either. I watched more Disney movies today on the TV and got up and walked a bit. My night nurse is my very special nurse named Crystal. I have blogged about her at other times, and now she is soon to be married. What a special catch for the groom named Lucas! Another CF pal down the hall stopped by with his wife to chat today. We have known each other for about 6 years via the internet, and we meet up now and then when our admissions match.

My sister Dolly called to check in on me. What a delight to speak with her. She tells me my niece was voted class Valedictorian of the 5th grade to address the graduating class next week. Awesome little niece! Way to go Emily. You have the world ahead of you to do great things for God, so let Him use your talents and you will shine!!  YEAH EMILY!!  My sister Noreen also called and we talked for about 20 minutes. Many times I wish I were back home, close to my family. I love all my sisters and miss them more than they know. The door is always wide open to come on down and stay with me in Virginia. Tomorrow is Monday and it is the week Dr. Kussin begins rounding on the pulmonary inpatients. Wonderful to have my very own attending back on the floor, calling the shots. So my plan is to bring up going home and see about a discharge date for next Sunday. That will have given me 12 days on this good antibiotic cocktail and with much improvement, I am confident he will agree. So rest up tonight on the vent and be ready to try an negotiate a go home date for Lori. Watch me. Nighty night......   Love Lori.

Monday June 16...

Another fine sunny day here at Duke. The cafeteria is jammed packed with the lunch crowd but still, I negotiated the salad line and put together a good looking, mixed with everything in it, salad, which I took back to my room. I don't like eating in the cafeteria because when I start coughing, EVERYBODY stares at you like you are dying and they are ready to start CPR on you. It's a positive place to have a heart attack as the medical help is always nearby. Once, in Toronto at the Toronto General Hospital, a guy coded in the cafeteria. The code was run right there, on the floor, between the appetizers and the hot entrees, and then he was transferred to the ER. He died. Another time, a lady coded in the hallway while waiting for the elevator to come. Lots of action as a code was called and everyone sprung into action in the lobby. Generally speaking, more people survive a heart attack code in a hospital than elsewhere. An example is Tim Russert. He was another statistic who died this weekend of a fatal heart attack while at home. Well, when your number is up, Death will find you. Death KNOWS where you live (and hide), and you can't escape it when it's your turn.

I just had a wonderful vision of eating a hot roll from Swiss Chalet. Using my thumbs to open it up so tenderly, allowing the hot steam to escape, then adding a pat of butter inside while it melts. Oh for the love of Swiss Chalet!! I can't wait to be back in Canada to have another chicken dinner at the Canadian famous, Swiss Chalet restaurants. Oh that dipping sauce! For sure, the food choices here in the South pale in comparison to the multi ethnic offerings in Toronto. I miss Mr. Greeks, authentic Chinese food, Harvey's cheeseburgers with onion rings, Licks home burgers, and a Swiss Chalet, half chicken, white meat dinner. Bring it on!! I never met a chicken I didn't like. up...I am feeling better. My appetite is back and it shows. Today is Day 6 of the Vanco/Fortaz/Tobra IV cocktail and it's working. It's also my 16th day being here. This weekend I am escaping. Home. Kitties, Sugar Gliders, Brian, mail and bills......what are things waiting for my return home for $700 Alex. So now to get Dr. Kussin to agree. We'll see. He rounds tomorrow. Hugs from "Lonesome Lori", xOXoxoO

Wednesday June 18...   

A beautiful Wednesday greets me and it's a cooler day here in Durham. No longer is it 100+ degrees but a rational 88 degree temp. I am progressing nicely and am ready to come home. Sunday is my discharge date. They are kicking me out after 22 days. Amen! Dr. Kussin rounded this morning on me and we agreed I am getting a bang for my buck with this antibiotic course and that staying until my morning dose of IV antibiotics are done on Sunday would be a good thing, to give me the max hit to stay well longer.

My sputum has been sent to both New York City, for Dr. Lisa Saiman to examine it as well as to the Burkholderia cepacia lab at the University of Michigan to be catalogued by Dr. John LiPuma. The NYC lab does synergy studies where they come up with the best probable combination of antibiotics that will be helpful to fight your CF bugs, where LiPuma's lab documents your strain and class of B. cepacia bug for his reference lab. When I was under the care of Dr. Randy Garnett at Norfolk General, we used these labs a whole lot, and the LiPuma lab has already catalogued 2 distinct varieties of B. cepacia growing in my lungs, while the NYC lab was helpful to come up with the best antibiotics that would best control the bugs in my lungs. Now at Duke, they are sending my samples out as well. Good thing because we can use the information to better plan for my antibiotic regimen.

The other thing Dr. Kussin brought up today while rounding was that about 20% of adults with CF are colonized with a type of fungus in their lungs. He says this is not uncommon for his adults patients to have a fungal bug but that it means a whole new treatment plan to stay on top of it. Whew. Amen I do NOT have that to complicate my treatment now. No fever, I am up walking around as much as I want, and looking forward to going home. Brian tells me the pool guy is at the house cleaning to pool and when I get home, I'll be able to use it right away. Awesome!

I am excited too, about going home, so I can pamper my precious song birds that frequent my backyard feeders. I have 5 feeders and a bird bath, and I love watching the birds come and enjoy the seeds and then have a bath. I have missed my feathered friends. Of course, my 5 furry friends miss me too. We have 5 furballs that wonder where I am. When I call home and Brian turns the speaker phone on, I talk to the cats and they go towards the phone looking for me. So all in all, it will be great to be back home, and better that I'm feeling so much better too. Thank you to the nursing staff on 7800 for again, treating me with respect and caring for my needs. My special friend Jennifer also provided some company for me and kept in touch, so Thank You Jennifer C for your friendship. OK...time to get some clean clothes on and begin to walk a bit. I have been blessed by your prayers for my recovery and for Brian, and I am thankful for my God of understanding and power, who can heal the sick and never let you suffer alone. Love from Lori oOxxXo

PS: The phone just rang and my sister Vicki called. She lives 3000 miles away in British Columbia, Canada, and it as wonderful to hear from her. I am guilty of not picking up the phone and calling her more often, but when I heard her voice, I was thrilled and the miles between us melted away. I forgot the distance, and we just carried on. I held in to her for half an hour, and it was wonderful to catch up on things. I wish we lived closer, as I don't see her but for weddings and funerals. We talked about her trips to Disney World as she loves to go for their Halloween parades and my plans include going this October for the same parades. Well I just wanted to post a happy thought and I'll be certain to call her again soon.

Thursday June 19... 

A knock at the door and a "Waz Up, Girl", woke me this morning. It was Dr. Kussin and he was in a good mood. Nothing new to discuss as I am following the course and sitting here infusing the antibiotics which are doing an effective job on the cooties in my lungs. I still had some scant trach bleeding but I think it's from aggressive coughing and from too aggressive suctioning by the RT. The RT loves to go down and vacuum up the nasties inside my chest and I HATE IT! I feel so robbed of oxygen and starving for air, that I revolt with anxiety. Nope. Not for me so don't do it, unless I am in very severe distress from mucous plugs and ask to be suctioned. Amen Dr. Kussin agreed with me to give an order for No Suctioning.

I got dressed and walked down to the cafeteria for lunch. Today their menu sucked, and I left with a box of Froot Loops, since the other stuff looked positively horrid to even consider digesting it. Maybe tomorrow I'll order chinese food for dinner. We'll see. I am excited about returning home. The pool is open, clean and waiting for me to enjoy it. I have missed our furry felines greatly. The plan is to get the Sunday morning dose of IV meds then have my femoral line pulled, and in a while after that site has stopped bleeding, I'll be heading out the doors. My CF pal Tricia left today with her husband Nathan, going home to Nags Head. There is one other CF patient here besides myself. Today Gina is taking care of me. Last night I had Kim. Thanks to the staff who pick me up on their shifts, who see me getting better and ready for home. By Sunday, I'm ready to leave and very thankful to have been here. Amen.

Friday June 20... 

It's a day closer to going home and I had a good morning check up with Dr. Kussin during rounds. He was jovial and cracked some smart remarks, and said I was much improved from my admission and he was glad to see me feeling better. Thanks to the nurses for their round the clock bedside care, and to the doctors for practicing the art of Medicine to make me well.

I just had a wonderful visit with my friend Jennifer. She was in the building and grabbed the elevator to come say Hello. Jennifer is a friend I very much enjoy because she always thinks about others. I suggested we have breakfast on Sunday after I am discharged, before I head home, so I can thank her for checking in on me and taking care of me while away from home. Here is a photo of Jennifer and her little DoodleBug named Chloe. Her husband is a CF researcher at UNC-Chapel Hill, where the most important studies about CF seem to come from. They really know their CF stuff there at UNC. They are the rival down the street, so to speak.

My sister Nancy called me last night and we had a nice chat. It is always so good when I hear from my family, as the distance makes visiting a challenge. They are all in Canada, and I am here, in the South. But I got that covered cuz when I die and am cremated, my ashes will end up in Toronto, scattered around the plot of my parents. So I'll find my way back home to Canada in the end, Eh?

Saturday June 21... 

Mystery solved.....Where has my mail and all those Get Well Soon cards gone to??

I had a phone call today from my best neighbor friend named Ruby. She mentioned that while I've been here, there have not been any wild parties at my house and it's been very quiet. Brian has been good while I've been away. Also, for the third time since I've been here, her gets well cards sent to me have been returned to her in the mail. She always addresses them correctly, to: Lori Morris-Hughes, Duke 7813, yet I never get them. Here's why:

There is another Duke patient who has an almost similar last name as mine....she is Lori Hughes. So when the mail room gets mail for me addressed as Lori Morris-Hughes, they look for Lori Hughes in the computer, see Lori Hughes has been discharged, and re-send my mail to her address. She gets it at her house, then writes "Return to Sender" on it and back it goes in a circle without ever having reached me. What a silly thing, all because someone in the Duke mail room ignores my hyphenated name. I've said it before....I am the sixth daughter of six daughters, and I alone chose to carry on the family name of Morris, so I chose to legally take on the name Morris-Hughes when I married, and it's a decision I was proud to get my father's approval of before he died. But some people don't know a hyphenated name means the first name is the start of the last name, and you just don't chop off the Morris part to make it easier and with less letters.

So Lori Hughes has been fielding my mail and dutifully re-sending it back to the well wishers. Now, I have never met her, but today, I have Will as my nurse and he knows her well. Will said I ought to phone Lori and say Hello, so I did just that....except she wasn't home, so I spoke with her mother who knows all about the mail mix up. Bless their hearts, they send back the mail with the exceptions of a few that have not had a return address. So the bottom line is that if you have mailed me a get well card while I was at Duke, I have not received it at all, in fact, not any in 2008 addressed to me at Duke.

I thought it strange that I hadn't heard from friends and I didn't get any cards, but then people called, so that made up for it. Turns out all of you that have made the effort to send me a card of encouragement did a wonderful thing, but I never got them. Thanks for making the effort. Thanks to Lori Hughes for being the gate keeper and sending the cards back to the sender.

I do know that during my last admission in March, Lori and I were both here at the same time, because I saw her name outside her room, and I had a "SAME NAME" alert sticker on my door. But I never went and knocked on her door to say Hello. Next time we are both in Club Med, I'll make the effort to go say Hello. So Lori, we'll meet then.

OK....another beautiful day here in Durham and less than 24 hours until I am on my way home. Amen I had a good tune up and feel so much better and am ready for home. Even though I feel good, it is not like how good YOU feel, because I still have CF. It's just that the nasty bugs in my lungs are not at their worst right now and I am able to walk the hallways without much distress. SO home I go, to my waiting furries and a loving husband named Brian who can't wait for me to be back home again.

Tonight, I am ordering in pizza for the night shift. Some of my favorite nurses are working and I want to Thank them for taking care of me, so it's pizza night on 7800 for them. My next email will be from home, Lord willing, so I'll close here and thank you for hanging around with me and for praying for me recovery. This time, I had a successful CF tune up and am going home better than when I came in, with no severe deficits or disabilities to add to my existence. All in all, the art of medicine worked well for me this time. Amen. Love Lori xOxxOOOOXXX

Two weeks later....

It's been 2 weeks since I last wrote and my delinquency is due to living life in the fast lane. I have so enjoyed feeling well that I have been playing in our pool nearly every day and catching up with work on other days. That last tune up really tuned me up! So what that it took FOR-EVER, it did its thing and I am out and about breathing better, Amen!

We have had a few days of much needed precious rain and the grass is a lush green and the bird bath is full of clean water as a result.

Since I last wrote, 2 CF friends I knew have died. One email gal lived in Ontario and died unexpectedly from complications during a tune up, and the other gal died expectedly from complications of rejections post double lung transplant 6 years ago. What a ride she had for those 6, precious years, all made possible by a generous organ donor and by a medical system that, while flawed, works.

Then another lung transplant lady I know from Duke just celebrated her 18th anniversary with her new lungs! EIGHTEEN years! God has blessed Kathryn with a long second wind.

I am feeling well and am leaving on a much anticipated cruise. Not with Brian this time, he is staying home, but with my friend and neighbor Ruby. We will be cabin mates for a New England and Canada cruise. While in St. John, New Brunswick, I'll be meeting with my nephew Daniel. I'll treat him to lunch at my most favorite place in the whole of Canada, it's called Swiss Chalet, and it's a famous rotisserie chicken place. I have dreams of Swiss Chalet. Then a little bit of touring the highlights of downtown, then back to the ship. Daniel has taken the day off to spend it with his Auntie Lori. What a cool thing he did. So yes, I am very excited to be leaving and relaxing. Bon Voyage!

July 25... 

Hello everyone!

I'm alive, well and kicking!

I'm back from a wonderful cruise and have needed some time to get stuff put away and laundry done, but now I've caught up.

My friend Ruby and I had an enjoyable cruise and while up in St. John, New Brunswick, I met up with my nephew Daniel and his wife Danielle.

Danielle was a delight to be with, but she had to go to work, leaving Daniel and I to shop and have lunch.

As planned, we had a wonderful lunch at Swiss Chalet, and it was a special treat for me to indulge my favorite: rotisserie flame cooked chicken with dipping sauce.

It rained and poured and the fog moved in quickly, but still we had a wonderful visit.

Thank you Daniel for taking the day off work to spend time with me, Auntie Lori!

My health was good and there were NO visits to the ships medical center at all.

I especially liked the scenic tours of Acadia National Park in Bar Harbor Maine. The views of the ocean were beautiful from the atop Cadillac Mountain. Everything went well, without a hitch or regret and fun was had by all.

I did however, eat too much though.

While in Boston, I saw a guy with a t-shirt that said "SNGH" on it. To me that meant Sentara Norfolk General Hospital, so I stopped and asked him. Turns out his is a ER doc in Norfolk. What a small world! And then at dinner, Ruby and I are seated with 3 other guests and they too, are from my city and one goes to my church.

Brian kept the fort running at home while I cruised and he had just one kitty emergency, Taylor, our 12 year old diabetic cat, had a low, very low, blood sugar one night, He scooped her up and took her to the kitty ER where she was nearly unconscious with a blood sugar of 19. Normal in a diabetic should be about 100, so she was very sick. A night in the Kitty ICU fixed her and cleaned our wallet out too! I am proud that Brian knew what to do and acted quickly. Taylor had not eaten much that day, so when she was given her daily insulin shots, it was not helping her. Anyhow, Hero Brian stepped up to the plaid and saved Taylor. Thanks Hun!

So now I'm home and caught up on mail, bills, and laundry.

It's HOT here, most says always hitting the low 90s, but that is not a complaint, just an observation.

OK...back to living life normally. Love Lori  xOxxOOXXoo

August 5...

More time in Paradise....nothing bad to report, like bouncing back to Duke to inhale antibiotics. I am just living life to the max and enjoying the summer. It's way too hot to be doing much outside that requires energy. I sweat out soooooo much salt, that I am often faint and feel like a rag doll. The solution is pretzels. Lots of them. Pour the salt right back in again. Just stuff like tending to my bird feeders and their birdbath, can tucker me out and send me drenched in sweat to get a dry shirt on. This is the South, duh, and it IS hot. I love it!

Brian is great and working hard. Always working hard. He's my main man. He is also looking forward to a much needed vacation at the end of this month. Time for him to relax and immerse himself in his hobby of listening to radio receivers and short wave radio. Every time he sees a new radio on eBay he just has to have, he comes in to the house and asks if he can spend some money. Hey, at least I know where his money is going, and it's not on something I'd disapprove of. He's so huggable!

I hear all 5 of my sisters got together in Toronto (without me) and had a nice time visiting. My sister from British Columbia flew to Toronto on business and the others arranged a get together. It simply wasn't long enough, but that's how life is. Families move on and away from the home base. Now if I had been there, it would have been perfect! Sadly, it seems it is only weddings and funerals that tends to bring us all together again. Let's hope there's a wedding in the future soon.

So... I said I'm doing OK. Hey, one foot in the grave and the other on a banana peel, but I am above ground and not 6 feet under, so no complaints, right?? But let me say that my CF sputum is a new kind of nasty for me. In June when I was at Duke for 3 weeks, I grew out a wicked CF bug. It is called Burkholderia cenocepacia Type III. Now since May 1998, I've had another variant CF bugs called Burkholderia cepacia Type II, which never seemed to particularly harm me badly. It was happily coexisting in my lungs without killing me. But this Type III bug is a new monster.

For years, there has been this thing called "Cepacia Syndrome". That means you acquire this new type of bug and within 6 months you are DEAD. I know of a few CF adults who had that very outcome after getting the Type III strain....death. Now bear with me....I am NOT afraid or anxious that I will follow that path, but I am noticing how smelly that bug is. My trach STINKS! Necessity is the mother of invention, the saying goes, so I have found that soaking my inner cannula of my trach tube overnight in a cup of  spearmint mouthwash, helps with the smell. No one else smells it....just me, but it's gross. So next meeting at the Duke CF clinic, I'll mention this and see what their concerns are, if any. But hey, you know I always say that the job of CF is to kill me, and it's trying hard to do just that! But right now, I'm still having too much fun living, to jump on over to the other side. Not yet. Not now. Life is precious.  OK....be well and read your Bible!  Love Lori  oOxXO

August 30...

We're home.

We had a wonderful vacation sailing the Caribbean!

The good news is that EVERYTHING went smoothly both at sea (more on that later) AND at home.

We arrived home to a house with 5 furries glad to see us again and 3 Sugar Gliders so happy to get out of their cage!

We had a housesitter come live in for the time we were away, and our Vet came to check on Taylor and make sure she was OK.

No worries as everything was perfect on the homefront...Amen.

At Sea, we ran into the beginnings of a hurricane. First it was Gustave who threatened our trip to Labadee Island, so that was rerouted to Coco Cay in the Bahamas instead.

The winds whipped it up and the Captain steered his ship away from danger to the Bahamas.

We were hoping to get another free day out of this, but nope. We did all get home on time and safely, so that is what matters.

Then hurricane Hannah came on the radar and we steered away from her. So while we were safe, landfall was determined to be New Orleans, on Monday.

Didn't they get whacked enough 3 years ago? Didn't learn their lesson, yet many rebuilt. Well now it's comin' at ya again!

We are home, fine and still feel ourselves rocking on the ship at times.

That's the good news. The other news?

I'm going to be admitted tomorrow to Duke for a tune up.

Need one now.

A text to Duke out at sea was answered with "Come Monday to be admitted".

Done. So now my laundry is being done and I'm repacking for a tune up at Duke.

Don't try to send any mail in the post as it gets diverted to another patient named Lori Hughes who has been discharged.

Try email though, as it always works.

Before you click, jot this down because it will ask you the hospital I am at and my room number.

Click on Duke University Hospital and enter room 7812.

Click photo of Lori flying a kite, to send me a "Get Better" card

  Flying a Kite on CoCo Cay in the Bahamas

Brian with his radio on the beach....listening to Rush Limbaugh

And please keep Brian and I in your prayers.

That is my request.

Love Lori  xOOxxo

Wednesday September 3

I was admitted to Duke with no problems on Monday...in fact the admitting part went very quickly and smoothly. It was wonderful to be expected and to have the paperwork done in admitting so I could come directly to the floor without waiting for an hour or more in the lobby. Went down for a chest x-ray and did an admission history and exam. Then on Tuesday, I went to the Interventional Radiology OR and had an Arrow Triple Lumen femoral catheter jammed up my vein, with severe pain. Oh Lord, He heard me cry as they struggled to overcome the adhesions from all the previous attempts. I cried, and they tried harder. Now I am NOT asleep when they do this, because I have no veins available, I can't get any sedation or pain meds while this is happening. So they try to dilate the vein and this hurts terribly, but as I breathe and cry through the pain, I know they will find it and all will be better soon. The surgeon talks to me throughout the procedure, telling me what he is doing, and when I feel the sharp poke of his needle, he adds more "freezing" to the area. Oh Lord, how this hurts! Worse than before, but NOT the worst ever. I ask them to stop and let me catch my breath, to cry more...and they do....so when I am composed again, they continue to dig into my groin to dilate the vein so they can sew the IV line in place. It's done. Finished. When the line is in and working, THEN I am allowed some pain meds and a drop of Versed, enough to take the sting of anxiety away, while the pain recedes. Isn't there another way to go about this? I'll have to ask Dr. Kussin,.... because this is killing me.

Dr. Kussin rounds on me at 8:15 AM today with the pulmonary team and he is not a happy camper. He has just found out that I now have a new bug in my lungs which scares the heck out of everyone. Him especially. This new bug, is a variant of an old friend I've had for some time now. I've cultured Burkholderia cepecia since May 1998 and it has always been a nasty CF bug, known to help kill its CF host either quickly, or to bed down and cause havoc for a longer duration over the long haul. So my kind is the kind that did not kill me within the first 6 months, so amen for that blessing. However, I still had to practice infection control and not have physical contact within 5 feet of others with CF. No problem. But now....that's all changed.

Dr. Kussin is upset. Miffed. Surprised. He now finds out I have Burkholderia cenocepacia, Gemnovar Type III, which is not favorable for me. He tells me I am like the "Typhoid Mary" of England, in that I am now feared as a source of contagion to others. His nightmare is that I'll infect other CF patients, especially those waiting for lung transplant. Oh Gosh...what to do? The easiest thing is to get rid of me. Make me go home. Send me away where I am not a threat. He talks about this to me and I am regaled in anger. "Why get rid of ME??" I ask. I am safe here, and need to be here. He wants me to consider home care on a femoral IV. NO WAY! I feel hurt, sadness, like I am being dumped. They are too afraid of the other patients getting my bug, that to protect that from happening, it's best I be sent home. Nope. Won't agree to that today. I came here needing medical treatment and now I am being told it's best for me to go home? I cry. I call Brian and sob on the phone. He listens and shares my fears about line sepsis, fever and infection. He wants me to stay put.

At the end of the day, 2 of the doctors from the pulmonary team come by to cheer me up. They are here to visit "the prisoner", they announce. They come to answer my questions and make me feel better. We talk. They throw in a joke or two and the visit is a good one as it clears up what was said and what is being thought. Right now I am a HUGE risk to sick CF patients and to transplanted patients, so they are all scared I am stuck right in the middle of all of this while being here at Duke, but they are not "dumping me", but are looking at ways to lessen my exposure to other patients. They relieve a lot of anxiety I had about being sent home and being told I am no longer allowed to come to Duke. That is NOT what was said at all. Their thoughts are: could it be better for me to receive home care with a femoral line, rather than coming in here for 2-3 weeks every time? We'll talk more tomorrow on rounds.

I Googled "cepacia syndrome" and found lots on information. One report said this:

Once patients acquire an infection with B. cepacia complex bacteria, clinical progression of the disease follows one of three commonly observed patterns, namely

(i). no change in lung function and clinical status,

(ii). acceleration of decline in pulmonary function and

(iii). fatal decline over a relatively short periods.

This is sometimes accompanied by septicaemia, which is often referred to as the "cepacia syndrome". At the Northern Ireland CF Adult Centre in Belfast, of 10 B. cepacia complex related deaths since 1996, 3 could be described as being the cepacia syndrome, from a clinic of 110 patients and a B. cepacia complex prevalence rate of approximately 30%. Most patients do demonstrate an accelerated decline in lung function compared to patients with P.aeruginosa or no Gram negative infection [9]. Found in: McCloskey M, McCaughern J, Redmond AOB, Elborn JS. Clinical outcome after acquisition of Burkholderia cepacia in patients with Cystic Fibrosis. Irish Journal of Medical Science 2001; 170: 28-31.  Web site:  http://www.cysticfibrosismedicine.com/htmldocs/CFText/bcepacia.htm

PS: Afternoon phone calls from sisters 4&1 lifted my crying heart. Thank you both to Dolly and Noreen for praying and for listening to my cries. I Love you all.

Thursday September 4

8:30 AM and Dr. Kussin rounds with the pulmonary team. I am again the focus of their morning discussions, trying to come to a decision as to what is best for them. I am no longer mad at him, because he was merely reacting to a bad situation and I made him out to be the bad guy. He did tell me that from now on, I am absolutely barred from coming to the Duke CF clinic. The special infection control barriers needed to accommodate me coming to clinic every 3 months doesn't justify me coming. I am looking at this as a good thing, as it will save me a 400 mile round trip to not come, but am I missing out of the benefits I might get if I were to come to clinic? Hmmmm...for now, it is not something to cry over. Yeah!!  I can skip CF clinic from now on....all due to this new bug, Type III gemnovar Burkholderia cenocepacia. It's like having a get out jail free card. No more CF clinic. OK...that's fine by me.

Speaking of "Getting out of Jail", my nurse Will played a joke on me. He put "bars" on the window of my door using tape, so it looked like a prison cell. It was a cool idea and I laughed along with him. My door was made to look like a cell and I was an inmate. Since I am in room 7812, I am now Inmate 7812. Here is a photo taken from the outside. One staff person came and asked me if I was embarassed and hurt by this joke. Heck NO! I can take a good joke and dish them out too, so I told that person to lighten up and see it for the prank it is, and that NO....my self esteem was not hurt but this silly joke. What a weenie that person was. Moving right along....

Still on rounds with Dr. Kussin, I asked what about coming in  again for tune ups?

We talk about other things, like his childhood growing up in New York City and being given salty pretzels to cope with the hot days and humid heat, and how he loves Frosted Mini wheats for breakfast. I ask him if he is going to dump me and he says NO. He will continue to see me and treat me, but the rules of the game have to change. For now, I am safe. I won't be turffed outta here today. A small victory, as this is where I need to be now.

For now, the rules are absolutely that NO ONE come into my room for any reason without being gowned and gloved. I am authorized to throw them out if they do and to drop a dime and call Dr. Kussin, to tattle tale on those who don't follow the isolation policy on my door. I am to stay in my room and not leave it. I agreed that as long as I have my laptop, I will do this. With my laptop, I can still access the world beyond this room, and my sanity would be served best if I could have this and the internet connection to keep me happy. We agree. The team begins to leave and I ask again, "Am I going to be booted home?" and the answer is NO. We will continue to deal with you here but as we know more, things might change. Dr. Kussin says I am the first CF patient he has with this bug, and it scares the bejeebies outta him. But for now, sit here, enjoy my computer, and we'll make the rules up as we go along. With that, I can agree and am happy. Turfing me out is not the answer. So what that you are scared, I have a need to be here right now, so get me well and then I'll go home, but this is something I do not want to try to do at home, hanging IV meds every 6,8 and 12 hours. Have a nurse do it so I can rest up.

When I frankly asked Dr. Kussin if I was being dumped and kicked out, he said "If I wanted to do that, it would have already been done". He has already severed the doctor patient relationship with 2 people that came to his mind, and in no uncertain terms, he told them never to come back again under his care. Period. He reinforced that I am not one of those he is discharging and letting go, but that he has a duty to protect the transplanted patients from me as well, so let's coast along and see what happens. Whew! What a relief to know I am staying and not being dumped or turfed out because of hysteria.

So now I am emotionally and mentally better. Tuesday was a shocker and I thought that on Wednesday I'd be ambulanced home that fast. Out the door to home. But not yet. So I wait. The meds drip into my veins and I am doing my time here as I pray for better health. It comes down to the fact that I am not ready to die just yet. When CF has kicked my butt so hard that I am weary and ready to rest, I'll still be fighting to live. I love life way too much to want to leave it now and die. I need Brian. Brian needs me. I'm not done my work here on earth yet, but when my name is called, I'll be ready. Just not yet. Not now.  Love Lori XOOXoO

Friday September 5

Better news to report this day. Dr. Kussin and his team just rounded on me and it started off great with a joke and a laugh. What would my last meal be if I were a condemned prisoner on death row? Then he sat down in my lazy-boy chair and answered some questions. He asked what could be done to make being "lock down" in my room more pleasant? That meant I am not being sent home but am being allowed to stay and finish this 2-3 weeks of antibiotics. Amen for answered prayer. Brian did not want me home with a femoral triple lumen line at all. Too scary dealing with sepsis, which is a blood infection from a contaminated IV line, in my case. So armed with some books, CDs and this laptop, I am on room arrest, but at least I am not being sent home.

We talked about the likelihood of me dying within a year from the dreaded "cepacia syndrome" and he thinks I am not a high risk candidate for it right now. Why? I am older than some who have had it, and I am not going on to transplant, so my risk is smaller. He does not have the impression I'll be dead in a year from this new bug, but he's not a betting man so will leave it at that. I told him my family expressed concern, asking "will this be the thing that kills me?" and he thought not. I'm a fighter and will get through this. Moreover, the Type III cepacia bug could hav ebeen a lab error, so they will have the micro lab re-type my sputum again and verify if they come up with that finding again. I asked him "Don't they (the micro lab) know how damning it is to label a CFer as a Type III cepacia patient?" He said it is not taken lightly because in coming to that conclusion, it means lung transplant is not an option, and for some, this is their last hope. But still, he will have the micro lab run my bugs again to double check their report.

So perhaps my anxiety was misplaced. Maybe I cried over nothing.  But I say "No way!"  I cried because this was ME they were talking about, not a lab dish. The results from the micro lab determine my treatment options and everything is guided by their findings. So my tears were not in vain because I believed I was being given the kids meal when I ordered the mega biggie sized option. So for now, I am safe to sit here in my Duke hospital room and focus on getting well. Dr. Kussin said the plan is to hold me here hostage until I am clinically better, then to turf me home. Amen Lord! Will the nurse was right. Get down on my knees and ask the Lord for a dose of wisdom for the medical team. Will is a nurse on this floor who stopped by after his shift was over last night and talked with me. He prayed for me, which I asked for. Thanks to everyone who saw that keeping me here now is the right thing to do for me, the patient. Sending me home was not my best treatment plan.

So if I were bring served my last meal what would it be? A half chicken dinner of white meat from Swiss Chalet, with fries and their famous dipping sauce.

Well today is Friday and the weekends here are so quiet. Nothing much happens. Another doctor rounds for Dr. Kussin, who comes back in on Monday. So my weekend will be rest, internet browsing, sleeping and being hooked up to the IV meds every 6,8 and 12 hours. Amen I am here.  Love Lori XOxxoO

PS: I had a late evening email from a precious friend named Donna, who lifted me up in prayer to the Lord and encouraged my heart. Thank you Donna.

Also, sister #3 called (from outside of Toronto) to check in on me. It was wonderful to hear news from Nancy and to share the treatment plan for me. Thanks Nancy!

Saturday September 6

Nothing happened today. The weekends here at Duke University Medical Center are usually very quiet and boring. I had Will as my day nurse and he shared some time with me which was nice. My night nurse is now Courtney, a young nurse who is nice. The weekend covering doctor did not come into my room to see me, but stayed at the door and said "Hello".

The winds from the hurricane did not do much here in Durham except dump much needed rain on the county, but at home, it was more chaotic. My neighbors lost power and Brian allowed them to plug into our socket for electricity. We run a mega huge industrial generator at our house which will support us for 7 days on diesel when needed. Lots of trees were down but no broken glass. Some lamp posts were damaged and their glass globes broken, but the house was untouched. brian stayed at home to ride out the storm with the furry animals. We have 5 cats and 3 Sugar Gliders under our care.

My sister Dolly called again to check in with me and we had a great talk. It was lovely to talk with her and get updated news about what's going on in her life up in Toronto.

So here I sit, with my CF bugs, watching useless TV and searching the web. Scouring for anything useful and trying to keep from just vegging in bed all day. Slowly, I might be getting better, Amen. Hugs from Lori in room 7812 @ Duke......XOoXoXXxxxx

Monday September 8

Nothing much happened all of yesterday worth updating y'all, so I did not post.

It was a rainy day, from the tail end of the hurricane that blew by, but I just watched TV, videos, or internetted all day, plus slept a bit.

My sister Dolly phoned me and we chatted. We are planning a Disney adventure next year so we can spend sister time together, something important to do.

Now today, Dr. Kussin and his pulmonary team came in early and the first thing he asked me is "Have you changed to name of your web site yet to 'Thanks to Dr. Kussin for saving my life again'"? I said "I'm working with production on those changes, but not yet". We laughed. It's always a good thing when the doctor comes in on a positive note and can joke with you, otherwise something serious is going on. So a laugh here and there to break the ice, then we talk about the bugs I am growing (....no results yet as the lab is still cooking them) and what kind of exercise am I getting while on room lock down? No exercise, other than getting out of bed to go to the bathroom, to shower, or to sit in the lazy boy chair to log on to my laptop. So he asks for the Physical Terrorist (Therapist) to come and bring me those stretchy exercise bands to get me moving more. He asks about bringing in a stationary bike they have on this floor, but DUH!! I can't use something that other patients will come in contact with. So I wait for the stretchy bands to arrive.

Next Tuesday will be day 15 here, and day 14 of this triple IV antibiotic cocktail I am getting every 6,8 and 12 hours. As I am now turning the corner and believe I am getting a "hit" from it, meaning it is working, I will put it out there about being discharged next week. Give or take a day. 15+ days of treatment with me feeling better, ought to do the trick.

Last admission, I was here for 22 days, because with this new bug, I did not respond at first to the IV antibiotics so it took longer, but I am ding better now and will look towards a discharge date next week. Amen for answered prayers, and for Dr. Kussin's wisdom to treat me properly. We have not ventured into talking about what happens the next time I am infected, that chat will come, but I hope I am able to come back to Duke for treatment and care. That's my ongoing prayer request, that Duke will continue to treat me here in the hospital, despite the serious CF cooties I harbor in my lungs. Much Love, from Lori  xXooXoOO

Tuesday September 9

Good Morning Friends! It's a dreary day here in Durham, NC as the weather is acting up due to the recent passing hurricanes. All of North Carolina needs water so badly, they are in a constant state of water rations and restrictions so dumping more water here is a blessing and very much needed. The pulmonary team rounded early and came in as a pack. Dr. Kussin was pleasant and suggested a daily dose of Lasix to help me pee out more water as I am getting a bit edematous. That means swollen from hanging on to extra fluid. For me. it's mostly in my hands and ankles, and I don;t like being puffy, but also I am on 40 mg of Prednisone every day which fights to inflammation, but adds to the bloating. So bring on the Lasix and let the peeing begin.

Dr. Kussin also asked for another sputum sample for the micro lab. Hmmmmmmmmmm...I wonder what's going on. Perhaps they want to confirm my Type III gemnovar of B. cepacia, but having already labeled me as having it, does not reverse the damage done. Maybe I am resistant to all the antibiotics and they want to confirm their lab findings, but I am doing a smidgen better, so "something" is working, however poorly and weak. Another freaky situation could be that they spilled the sample or over cooked it and it's not useable. YIKES. Or maybe they lost it. That has happened before when I've had stuff sent and it gets lost. Once they sent a stool sample (poop) in a denture cup. It never made it to the lab. It got lost. Imagine the horror of the person who found it, then OPENED it, and wham! Got hit with the stench of week old poo! It happened.

So now I have coughed out a good sample of the yucky crud coming out of my lungs and it will soon be on its way to the lab again. Whew. Let's get this thing cooking, so we can verify I am on the right meds and can feel better. Then I will be heading home to my husband and my furry critters. Plus all the songbirds too, that come to my feeders.

I spoke with my sister Noreen and then Dolly yesterday. It is always a good time when I can talk with my family. Dolly and I had a good cry a few days ago when I was told about this B. cepacia bug and how it can kill rapidly. We pray that will not be my situation, but know that God has all this in His control and I trust Him to call the shots. Cepacia Syndrome is a very real thing that can kill and does kill those with Cystic Fibrosis. So far, I have survived certain death 3 times, so I keep expecting the miracles to continue. Amen I have a Lord and Savior I trust.

In late October, I have signed up for a forensic workshop in Virginia Beach. It is the newest happenings and updates for local Medical Examiners of Virginia and so I am excited to be attending that. Here is the link to that seminar:  http://www.vifsm.org/medicalexaminer08.php  Another great chance to grow in knowledge of the job I do and love doing!

Note to Debbie: my AFLAC rep....here I sit at Duke doing my time. I know you read my updates, so when I am home, let's meet to do the business at hand you suggested. OK?

What else to say......Brian and I were going to walk in support of our friend Tricia this weekend at her CF fundraiser but I am here. I emailed her husband Nathan to update him and say I was sorry we would not be there and he understood. I know they will have a hoot of a day at Nags Head walking to raise awareness and money for CF. Tricia is a hero. God has used her life and the saga of her micro-preemie daughter to increase awareness for the needs of Organ Donation and of CF. Here is a link to the web journal her husband Nathan keeps. It is such a beautiful story of his love for his wife and daughter and of their trust in God. http://www.65roses4pattysue.com

My neighbor Ruby called last night and we laughed about little things. Thanks Ruby for being a friend! They got through the after effects of the hurricane as we did but they lost power at their house. It's always good to talk with Ruby and joke about something.

OK....going back to bed for a nap. More later. Love Lori  XooxXO

Late entry: This afternoon, I had 2 visitors. The first was a Duke Chaplin named Dave. This was his second visit to talk with and to pray with me. Dave just now has a new 10 day old beautiful daughter, in addition to an older brother. He is from Alabama and doing his seminary work here at Duke. We talked about the weather, about being on room isolation, and about coping with being locked up. I have enjoyed his visits to see me and we always part ways with prayer, Amen for this new young father and future full time pastor.

My second visitor after 6PM was the CF social worker named Bill. He has been here for 27 years and essentially is the glue that holds the pediatric CF social work department together and he also follows a few of the adult CF patients. I usually see him at clinic visits, but when he gets wind of who's on the floor as an inpatient, Bill makes his rounds. Bill will never discuss any other patient, and is all hush hush about that. He guards his secrets well. He loves the job he does here at Duke and I hope he can continue doing it until he decides to retire. Point being Bill is a wonderful CF resource and a very good listener. Hey hey for Bill, and praises for Chaplin Dave, both men add pleasure to my day with their visits.

Wednesday September 10

What an awesome day  to wake up and still be here at Duke. I am receiving the care I need and am thrilled I am not at home on home IV care, but here instead. This might change, however, as Dr. Kussin has a new game plan he wants to try. Just now, the pulmonary team came in and rounded on me. Their plan is this: Dr. Kussin has asked the vascular surgeon (Dr. Lawson) to come and work me up for another access line or port. He might need to do more imaging studies, but their desire is for me to go home on a line or port and to receive home care as much as possible, to limit the exposure of my bugs to this hospital.

I know it will involve pain, but amen I already have a femoral line in, so I am not as scared as at other times. Their hope is to find a vein able to accept a permanent catheter or IV line, or port, and do the home care shuffle.   Not my best option, but for now, we'll see what happens. If NO suitable vein is available, then I I'll be back at Duke for subsequent admissions, which suits me fine. So now it's out of my hands and we'll see how God provides for me.  

I am pleased to be here, rather than trying to run IV antibiotics every 6,8, and 12 hours at home.  

It's dreary and raining here, but Durham needs the water so badly, so let it rain!

I did not sleep much, watching late night TV and being woke every hour for something. That's not a complaint, as I can nap this afternoon, but my biological clock is off its schedule. Last night at about 10 PM, the night supervisor was Crystal. She came in and asked me what treat could she bring me to make me happy, and I asked for PUDDING. So Crystal took her own $$ and went to the cafeteria and bought me a big serving of pudding. Something as simple as that was so welcomed and showed me love in action. As I am on room arrest, I am not leaving my room to walk around the halls or go to the cafeteria, something I miss doing. But they came to me and asked how they could help. What an awesome act of kindness. Duke likes to care for their CF regulars, as they grow used to us and nurse us frequently, and their way to treat me special was to hunt down some pudding for me. So THANK YOU Crystal for your act of kindness, which greatly impacted my mood and made me very thankful I was even thought of. I'll have to nominate a few nurses here for an annual Duke nursing award that recognizes excellence in nursing.

Closing for now, but if more news is important, I'll update y'all.

Love Lori XoOxxXO

Thursday September 10

Another day of healing here at Duke. I was reminded I am not to leave my room at all, due to infection control issues. I have been receiving daily email and calls from many people, both from those at work and from friends. Thank You John Seyler, for phoning me and chatting. John is soft spoken and shy, so to call me took a bold move on his part to reach out and call me, and I appreciated that effort from you. So buddy, you rocked me to my toes and I was happy you called.

I have heard from many people (via email) as word gets out I am still here. The big honchos in the Medical Examiners office in Richmond, even wrote. But they were asking how soon until I get my butt outta bed and back to work! They love me.

No news is good news. We are waiting to see if I have any other vein that can accommodate a long term line, or a port, to allow me to received home care. It is something I am not cool with or happy about. I've gone through 18 Medi-ports over 33 years, and lost them due to infection, mechanical failure, and clotting, so the thought of yet another port or line does not thrill me. Been there, done it, got septic--TWICE!  Still, to show I am a good sport and a compliant patient, I am going along with it until I know otherwise. But I don't like it!!

My nurse these last 2 days was a young Canadian gal from Ontario. She got her nursing degree and was recruited to Duke right away. Brain drain. When all the new grads leave Canada for better paying jobs south of the border. Canada hates to lose them, cuz then they go to the Philippines to recruit nurses for those who have left, and where are all the brightest and best nurses going? To the USA. Being a nurse is not a glorified job, most of the time. Anyhow. my Canuck RN and I talked about many things we miss about Toronto, like Swiss Chalet and Licks home burgers. WOW.

Brian is keeping the house together a taking care of the 5 furies and the 3 Sugar Gliders. Our housekeeper does the cleaning, laundry and everything else needing doing, and I am lost without her help. I appreciate your prayers and calls. Love Lori OxXOo

Saturday September 13

The dawn broke with a newness that promised a sun shiny day for Tricia's Great Strides walk for CF. My friend Tricia, along with her husband Nathan and new daughter Gwyneth, have an annual walk on the Outer Bank (Nags Head) of North Carolina (called the OBX) to raise money and awareness in their community of Cystic Fibrosis. The miracle of a double lung transplant was gifted to Tricia just a few months ago, but it has not been smooth sailing for them. Nope. But through it all, they have never lost sight of the fact that God is in control and He is using this family to bring Glory to God. Check out Nathan's web journal here:  http://www.65roses4pattysue.com/

Today was a mellow Saturday morning. Brian and I had hoped we'd be able to join Nathan and Tricia at the OBX to walk for CF awareness. I knew for a year that today was their special day, and we had hoped to be a part of it. Yet God, in His wisdom, wanted me to be here, at Duke, instead. I have questioned why this day of all the available Saturdays, I had to be here, but it was in His plan that that was to be. So here I am. I am doing a smidgen better!! Amen for improvement! The weekend on-call physician rounded on me quickly and basically I am sitting here absorbing all these IV antibiotics and decreasing my cepacia colony count. I understand why I am on isolation and the necessity of it.

Nurse Will, knocked on my door asking for my lunch order. The nurses were ordering pizza and did I want to join in too?? How awesome of Will to come ask me. "Yes!", I said, as I chimed in that I'd like a tiny pepperoni pizza, please. Lunch time arrived with a knock at my door and a hot pizza waiting. Thanks guys!

After lunch, I settled in to watch some TV, and then a knock at my door rapted loudly. I looked to see someone in yellow, gowning up to come it. It was my neighbors, Ruby and Rudy, and their son and daughter in law, here to visit me! I was smiling with delight to have these welcomed visitors come to see lil ol me!  They were in the area, going to Goldsboro Air Force Base with their son and his wife, and detoured 90 minutes out the the way, just to come spend time with me and to pray. What a wonderful blessing! They drove 4 hours to get here, then brought me a banana milkshake to boot! What a spoiled patient I was today. They stayed for an hour, all four of them gowned and gloved, and we chatted and saw slide shows on my laptop of our cruises. So why tell you all this...because you never know who important and vital your visit might be to someone sick unless you make the effort to go. It might be easier to come up with excuses whey you don't want to go, but going might bring God's blessings them them, and to you too! Amen and Thank You Ruby, Rudy, Ren and Kerrie, for making the effort to come see me. I was blessed by your visit and friendship.

Brian called about noon and said our diabetic cat Taylor, was showing signs of being confused and on a sugar low. He knew what to do: give her sweet maple syrup by rubbing it on her gums and mouth and under her tongue, and then putting down food for her to eat. The sugar gives a temporary quick fix, but you need real food to bring her sugar back to normal. So he was doing this and then called me back in 10 minutes with a progress report. Taylor was still confused and bumping into the wall, so I asked him to scoop her up and take her to the Kitty ER. He did. Taylor was being assessed when we last talked, but they were going to admit her... again. Last month, the same thing happened and her sugar bottomed out. She was nearly unconscious, 1 day in the kitty ICU fixed her, but recently, her insulin was switched from pet insulin to human insulin and I was warned this could happen. The pet insulin was being phased out and no longer available, so last week, under our Vet's guidance, Taylor was switched to human insulin. So now what this means is we'll have to monitor her well to make changes in her human insulin dosage. She'll be fine. Thanks Brian for being observant and taking Taylor to the Kitty hospital. The things you do for your "Kids", eh?

So in closing, Nurse Will made me day wonderful, my visit with friends from home added to the delight, and beautiful weather for Tricia's Great Strides walk made the weekend a wonderful reason to be happy, glad and joyful for all I have in my life, including the blessing of having CF. More later, Love Lori OOXXxox

Monday September 15

I had a late night visitor...a BIG cockroach in my room. It came in from under the closed, room door, and scurried around inside. Didn't he know this was an Isolation Room and off limits to  him?  Guess not. So I got out of bed and grabbed a big styrofoam coffee cup and followed it around. Up the wall it ran. When it was too busy looking around the room, I slammed the cup down on his body and pushed the room call button for a nurse to come. Nobody came. I was left holding this bug hostage under the cup, until I let my hand go. Then the cup slowly moved an inch...then another.....and another inch....as he was trying to escape. Finally, I opened the door all the way to the hallway and called for any one  to come get this creature out of my room. 2 nurses came but only one would tackle on the bug. The other protested her fear of bugs and stayed outside my room. Nurse #1 came and dispatched the bug quickly and took the bug and cup with her. She had squished the bug and left with it---DEAD. Whew! That was my first Duke Cockroach.

Now to the news you really logged on to read.

Tomorrow afternoon, Tuesday, I should be discharged home!

YEAH...as the cell block goes wild!

Inmate 7812 is expected to be discharged after the noon dose of Vancomycin is finished. It takes 2 hours to run, then the femoral line has to be removed. The nurse practitioner, her name is Kim, she'll come and cut the stitches out of my groin and pull the 16 inch long IV catheter out. The crowd goes wild!! After confirmation that the site has stopped bleeding, then I'm able to leave. I should be home around 6PM. Then it's read the mail, do airway clearance treatments, inhale nebs, then crawl into bed with a few furry, warm kitties on my chest. Home. Amen I'm going home.

I am waiting for Dr. Kussin to come see me to talk about what we do next and were to go next. Do I still come to Duke for tune ups? Do I get a femoral line and go home for home care? Do I go to Norfolk General and be admitted there?? I don't know what the future will hold for me, BUT I DO know God holds my future and He's concerned about me. I have come to believe Duke won't let me down and will continue to see me and write orders for my treatment. Anyhow, this is may last night here for this admission and I am EXCITED!

My neighbor Ruby sends me cards and addresses them to me here at Duke to: InMate in Cell Block 7812. Perfect! I laughed at her use of humor and my weekend nurse, Will, taped rows of tape on my door window to give the appearance of being in jail. He made a sign that read: Lori's Jail Cell. It was all done in fun. At shift change, a nurse asked me was I "bothered" or "emotionally" hurt by the jail house bars??  NO WAY! I laughed right along with them. Thanks Will!

The staff here can be very friendly, and include you in on meal times if they really like you. Dr. Kussin sprung for pizza one afternoon and the staff lounge was full of Dominos pizzas, along with a happy staff. They included me and I got my own personal pizza. Way to Go! Thanks Dr. Kussin and Will, RN for including me in some lunch meals when you ordered out and allowed me some variety in my choices. I appreciated being asked and included. Smile!

My task is to make a thank you card for Dr. Kussin. So here it is. I made it with Hallmark software. Kewl!

More later. Love Lori OOXXox

Thursday September 18

I'm HOME!!

Amen for answered prayers!

Last night I spent a wonderful night back in my own bed. I felt like I was a limp rag, like I'd run a marathon and didn't have any energy left. I had let my muscles get de-conditioned by not working them enough when I was in isolation. It was a new lesson for me to learn. When you spend 16 days in bed, not being able to get outside of your room to walk the halls and use those muscles, they suffer from disuse and become weak. I don't ever wish to come home next time like this. There must be a way to allow me to walk outside, away from people, in the open air, to keep my legs from feeling like rubber.

I am happy to be home with my waiting kitties and to LOTS of mail!!

More tomorrow....I need some time out now.

Love from Lori  XoOx

Saturday September 20

I am better! I've been wobbly but today I had a great day. Amen! The glorious sun shine woke me up and just in time too, as Taylor has to have her insulin injection at 9AM every morning. After her Kitty ER incident last week, Brian brought her home and she recovered. It was decided to let her spend the day at our Vets while they ran a blood glucose curve on her, sampling blood every hour to see how her her sugar graph looked. Her sugars were still, way too high, at 425, so Taylor was switched to a new kind of Human insulin with just a once a day shot. Now she gets one 9AM injection which peeks around 3PM and covers her for the 24 hours. We'll take her back in a week for another day at the vet's, to make sure we are doing the right thing for her. Now, she is happy, purring and back to being Taylor. No longer bumping into the walls and being confused and nearly comatose. Whew! Well that's been our life in the feline world of late.

Brian and I went to visit his mother today for afternoon tea. She is flying to Canada on Monday to visit her family for 2 weeks. Bon Voyage, Marie!

We had a quiet day and evening, preferring to do some tidying up and then laying down with 4 kitties while I read on the bed.

My oxygen company came yesterday and changed my liquid oxygen set up so that both 40 Liter tanks of LOX (Liquid Oxygen) are now in "tandem", meaning the tubing and hoses are shared between them, so I can crank that baby up to 10 LPM without it screeching loudly and freezing up. Ice freeze, also called an Igloo, makes your equipment freeze and not able to work, so that means no oxygen being delivered to the patient. The solution was to tandem 2 tanks to let them share the burden so they won't freeze. Not an ideal situation, but I am on a high delivery setting of LOX so that's what it takes to get 10 LPM to my trach. No complaints here, just news.

I was blessed to be home today and thought back to my time at Duke. Many questions were left unanswered as we are new ground and they don't KNOW the answers. At least I came out alive and at best, Ruby and Rudolph and family came to visit me and cheer me up with a banana milkshake. Inmate 7812 was happy for a while. I am grateful to have the ability to be treated at Duke, and appreciate their concern and treatment pathway for my care. The nurses make all the difference. When you have good, happy nurses, the stay goes by better. When you can joke with your nurses and also trust them, it makes all the difference in your attitude. Thanks again, to my special cadre of professional nurses who took care of me. OK..bed time....but I almost forgot!!!  My sister Dolly just called and we had a short chat. Sorry I forgot to call you and tel l you I wa home. I was so tired I plopped into bed. Thanks Dolly for calling.  Love Lori  xOoxX

Sunday September 21

Today is the Lord's Day. Rejoice in it!

Today a friend called. Cheri and I have been internet friends for a few years, brought together by the circle of Cystic Fibrosis. We don't often call each other, but every now and then we chat on the phone. Today Cheri called to say she is dying. She has entered in hospice care as she no longer wants aggressive treatment for her end stage disease and wishes to have as little pain as possible with the time she has left. I listened quietly.

Cheri shared with me that last week, she was certain she had just 24 hours left to live, she was that sure she was dying because her pain was so great, then hospice got her started on a pain pump and now she tells me that the last 2 days have been the best ever in her life because of the absence of pain! It took dying and hospice to take control of her pain. We laughed about that, how she has to be dying to FINALLY not be in terrible pain. We talked openly about everything. Her thoughts on cremation and what she'll wear when it happens (her night gown), and is the church going to glorify her in her service and not be a cry baby event. She wants praise songs sung and music played that explains what her life in Heaven with Christ is going to be, and in the end, it all about praising God. She is a child of God who accepted Him as her Savior years ago, and knows she will soon be in Heaven in her mansion, RUNNING, not walking, the streets of gold. Running, something unable to be done for years due to Cystic Fibrosis, is now taking up her time. We talked about her husband Bill, and God daughter Chrissy, and how she is so very tired of fighting. I understand. I was once in her shoes, when I too, thought I would not live, but God changed that. I was given another chance to live more, to live longer, to be here today. Amen. But my time too, will come to an earthly end and the most wondrous thing is that one minute after I die, I will be the happiest I have ever been in my whole life!! I'll be rejoicing with Jesus and His Angels, in His presence with souls who know me. My parents especially. What joy it will be for me on the other side of the curtain, but here on earth, the grieving begins. Don't drag it on and on...but move quickly, please, because I'll be exactly where the Lord told me I would be, if I loved Him and asked Him to be my Savior, sinner that I am. Now Cheri is closer to the other side and feels it's allure. She is sad for leaving soon but told me she is really at peace now. She feels a calm peace that makes her understand she should not be afraid. She IS afraid that her family will witness her gasping in the last hours, and says that is the suffering she must bear, but with hospice now in the picture, they can give her meds by her IV that will sedate her and make the appearance of struggling to breathe, not a horrendous memory for her family. Amen for hospice nurses.

I asked her if there was anything I could do for her. She shared with me her wish that her CF equipment, be given to those with CF who need it. She was painfully distressed that it would all just be thrown in the trash, and this is not what she wants, so she asked ME to be the guardian of the stuff and send it to those with CF who need it. Those without insurance. Those who can't make ends meet. Those who would be grateful.

I promised Cheri I would fulfil her wish. I'd do it. Thank you Cheri for trusting me with this most precious gift. The gift of sharing with others who can use what we no longer need.

Then I asked if I could bring her anything just for her, anything??

She thought and said "No thank you". I pushed. How about just something you really, really want?

I pestered her, hoping she'd make me happy so I could bring her something. "OK", she said.

This is Cheri's dying wish list:

• House salad with Ranch dressing on the side
• Naked baked potato. Nothing on it.
• 6 fried shrimps
• Barq's Root beer (no other brand will do)
• Russell Stover assorted box of soft caramels and soft centered chocolates

That is it. Could there be anymore I could get her?  "Nope. Just that", she thanked me.

I asked Cheri when can I bring it over, and she said she already has a meatloaf dinner coming on Wednesday, so could I call her on Thursday??

We agreed. I'll call Thursday to check in on her, and if she feels up to it, I'll go bring her this small token of my love.

Friends being friends.

So when my friend Donna was woken at 3 AM this morning to have quiet time with God, just think: God was using Donna to pray for me (an others too.)

In that still quiet moment, God was talking with you, Donna. Thank you for listening. Thank you for praying for me. The Lord KNEW today my heart would cry, and I needed extra prayer. Amen for Cheri and her testimony to her Lord, and for CF because it brought us together. Now in death, we must give God the Glory and Thank Him for the miracle of his child Cheri.

I'll see Cheri later in Heaven. No doubt there. Guaranteed! Thank you hospice for making the journey to death less painful, and thank you Lord for the wonderful life of Cheri. God Bless, Love Lori  OXoXo

Wednesday September 24

Just a quick note before I head out to a monthly prayer group I enjoy.

This morning as I was picking up around the house, my feeding tube in my stomach popped out! Yes again......This was the 3rd time this has happened. The balloon that is inflated on the inside of my stomach to hold it in place, bursts, due to age and breakdown of the plastic resin. No biggie as it's happened before and AMEN I was at home so I could deal with this right away. So out it came, and I put my hand over my pajama top to keep the gastric contents from spewing out all over my belly. I have spare g-tube kits in my closet, just for this situation. I had ordered 5 kits and now see I have 2 left. I grab a kit, open it, take out the new g-tube, and gently nudge it into the stoma, which is the belly hole and tract that was surgically created in 2002 when my first feeding tube was placed. Whew! I have pain as I persuade the tube to go in, and it does! Amen. Then I get the syringe and find some water, draw up 5 cc's and squeeze the fluid into the balloon port, so that it inflates inside my belly and pins the g-tube against my abdomen. It worked so smoothly and without ANY issues! Amen Dr. Lori took care of herself yet again and am the proud wearer of a new g-tube. This one ought to last for about 2 years until the balloon ruptures again. So that's how my morning began, and it ended on my knees in prayer to the Lord for thanks that it did not happen while I was not at home, and praises that it went in so well.

Now it's shower time and time to leave for my monthly ladies prayer group.

More later.....Love Lori XoOx

Thursday September 25

Just 3 months until Christmas! Wow.....it's just around the corner. My plans were to visit my friend Cheri today, but she phoned me and asked me to delay it for now. Of course I understand and will go visit when she is up for a visit and wants me to come. So for now, I did not deliver her the 6 friend shrimp and the other goodies.

It's been raining all day and we need it badly, so I'm not complaining. I have the bedroom windows open and the cross breeze is refreshing. The birds are hiding under the cover of the feeder so they stay dry. The Mourning Doves are on the fence cooing. I love the rain and the fresh smell as it wafts into my room. I had a very lazy day today. Did nothing but slept mostly. Didn't leave the house and fought with my sputum to stop being so annoying. It's really stringy and floppy, so often it hangs out of my trach when I cough. Eww.....

Sister #2 called (Brenda) to say I me again, a Great Auntie. My nephews and nieces are now having their families, so another little girl was born to my nephew Jeffrey and his wife Kathy. This is their third daughter. Wow. Me being a great auntie. Didn't think I'd live long enough to see that happen. Amen for that blessing.

No new insights into this CF bug I have, except that Dr. Kussin did talk to the vascular surgeon Dr. Lawson and they came to the agreement that for a permanent central line somewhere, I'd have to go to the OR and be put under general anesthesia. This is not a great option for someone with CF, but obviously they have thrown this about and have decided it's what would be best for me. It will be down the road that we discuss it. For now, Amen, they are able to get my right femoral vein and sew a catheter into it for IV access. We knew it would come to this. I'm forewarned. OK Lord.....you and I are going to be best buddies again when it comes to going to the OR for this down the road.

Time to sign off for now. Be sure to get on your knees to the Lord today, for all the blessings you have. Love Lori  xOx

October 5

Wow have I been having fun, living life! Many of you have emailed both Brian and I, asking if I was OK. You hadn't heard from me on this site and thought I might be dead. Not Yet! So for Tyler in Oregon, John in Waterdown, Ontario, Roy in Bristol, England and a few others, I am very much alive. In fact, some days I was doing little but resting, and other days I was out at the state fair in Richmond! I spent a wonderful day at the state fair with my neighbors, retirees named Ruby & Rudy. We had lots of fun walking around on a day where few people were there and the weather was wonderful. In fact, a cow delivered a new baby as we watched. She was eating up the afterbirth when the farm hand came and shoveled it up and took it away. It is supposed to be eaten. And the hogs were huge! One momma had like 12 little piggies grabbing for her teats, poor thing. But the circle of life was vibrant at the fair. We got lots of kitty food that Science Diet was handing out for free. We came home with 47 packs of food! The root beer was really good and the turkey leg I brought home to Brian was eaten by the next day. This time I tried some Kettle Korn and it was REALLY good! Now I'll buy that instead of plain old popcorn.

Ruby, Rudy and I have another adventure planned for this week, Lord willing. If we are well enough to do it, we'll drive to Williamsburg for the day and shop. We'll look at historical stuff too, but mainly this is a shopping day for the girls, Rudy included. We hope the weather is nice outdoor sunshine so we can walk around. There is so very much to do in Williamsburg. It's been at least 5 years since I was last there to shop. Time to go again.

We have nice cool days now and the heat of the summer days has passed. It's still shorts and t-shirt weather outside, but not HOT like the South is during July and August. My sister Noreen and her husband will come to visit next June. We had hoped it would work out for them to come in September, but the timing was off and I was sick in the hospital for the first 3 weeks, so I was thrown off too. So Lord willing, next year they'll come for a 2 week visit. Our house is always open for company. If we like you, you can stay for 2 nights. If not, one and you're out!

The window to my home office is open as I listen to the crickets in the background chirping their songs. Jaxson is at the window, intently listening to all the sounds. He can hear the old coon dog a few door down yelping. So can I. It's sherlock, the coon beagle hound. The sound of the evening chorus is beautiful. Giant bull frogs glub in as they too, try to attract a make out by the pool. They sound so loud! Calling for a mate.

My grand niece and grand nephew all have birthdays soon. Teaghan and Kaeden will both turn 1. Then nephew Neil has a big birthday soon too. I think he'll be 17. He lived 3200 miles away in Vernon, British Columbia, Canada. I miss both Neil and Richard, my nephews who live so far away. But I've not forgotten them! Birthdays and Christmas I always remember them. Auntie loves you, boys!

OK...so I am doing what you all are doing....living life. I feel as best as I can be, having 1 foot in the grave and the other on a banana peel, and making something useful of my time. I am still in contact with my CF friend Cheri. She is on hospice care and dying. She knows this too and is willing to talk about her issues about dying. It's hard to find a friend who will listen when you want to discuss death....yours particularly. We are kindred souls, Cheri and I. She is closer to death now than I am, and she shares with me her fears and joys. When your tight group of friends are mostly those with CF, you go to a lot of funerals and talk about dying. But in dying, Cheri is actually living the most. How?? She is talking about things that are meaningful to her to those when loves. She has a limited amount of time to meet and greet all her friends before she can't hold court with them any longer and she wants to say good bye to us all. She called me up to say good bye. What a gift. She gave me her gift of friendship and invited me into her close circle of friends she trusts to talk about dying. Thank you Cheri for being my friend. I promise I will do what I said I would, OK?? Everything will be gifted. Promise. So the4 twilight creeps in and the stars are dancing about the sky now, and it's time for me to log off. Yes Friends, I am very much alive right now, and a brief absence of say 2 weeks ought not get you upset too much if you don;t hear from me. If it gets to a month and nothing....then you can up the worrying a bit and email Brian. He'd like that.    Brian.Hughes@whro.org        Nite nite.....Love from Lori  XOoX

October 20

Once again, life has kept me busy to the max! No time to complain about anything. I'm out there, doing life, and loving it!

My pal Cheri is better! How can someone on hospice get better?? Well, by tweaking her pain meds so she can now function. It's been a remarkable change for the better. When she was in hospice care, she was dying. They maxxed out her pain meds and gave her a pain pump, and for the first time in YEARS, she slowly got better. She has been able to eat a few bites of things without extreme stomach agony, and now that her pain is under better control, she has gained FOUR pounds! What a turn around. They got her well enough that they are talking about taking her off hospice care. Cheri will consider all her options, but she feels like now she is living, and not dying. Wow, what a change from my previous posts. It's totally a God thing. He did it! Amen Lord for this miracle in Cheri's life. Now... it won't cure her CF, nope, but her dying days are now living days, when she is not in agony. She now WANTS to live.

If hospice cuts back or denies her these pain meds and pump, then she will slide right back into the dark hole of "Death". We want hospice to allow Cheri to have the pain pump and meds as long as she can function and be pain reduced. She is never 100% pain free, but she is pain reduced. So don't take her lifeline away...allow Cheri time to live a little, before CF creeps back in and does its job. Amen for this wonderful change in her life, for however short it may be. Amen.

The weather has been wonderful here in Southern Virginia with warm sunny days. A dash of rain here and there, but nice warm days. My sister in Toronto says they already have frost in the mornings. YIKES! I am doing well. I am having a contest with my cat Taylor as to who has the grossest breath. Brian says Taylor does now, but my Pseudomonas bugs are coming out and making their colonies known, so give me a week or two, and I'll be in stiff competition with her for the stinky breath title. Sad when you compete with your cat for a contest like this, eh? Hey, the winner gets a can of Meow Mix, so I hope Taylor wins!  But really folks, right now I am doing all I can, huffing and puffing, and am happy.

I went on another road trip last week with my neighbors Ruby & Rudy. We took the Surry, VA ferry to the Jamestown Settlement, then drove to Williamsburg and the Pottery. It was a grand shopping day and the weather could not have been better. We shopped all over and then had lunch, and shopped more. When the day was done, we drove home and as we drove down my driveway... just 500 feet from my front door, 3 deer ran right in front of my SUV! They were just inches from slamming into my SUV. They were grazing in the woods in front of my house, and when they saw headlights coming, they took off. Nearly killed them! It was neat to see then in their pack traveling together. Most evenings at Dusk, you can find them out in our back yard, or the neighbors, grazing on their collards, pumpkins and corn. While we were out shopping, Ruby took this scary photo of me at Yankee Candle, trying on a Halloween hat. It's a Jester's hat and I picked it up and she snapped the pic. Thanks Ruby! I like October because of Halloween. I like the macabre feeling and that I can get away with skeletons and creepy things for the month and be taken as being "normal" with my depraved mind. When I have been in for a tune up on past Halloween's, I have brought skeletons and ghoulish stuff into my room and I tape skulls and skeleton corpses on my door. It creeps out the nurses. Hey, that's me.

In 5 days, I'm off to Disney. Time to party with the Mouse. It's Mickey's Not-So-Scary Halloween Party and I'm going with my pal Donna.. Praying my lungs hold out and no rotten lung juice spoils my trip. I'll deal with that when I come home. I nearly forgot great news......I just bought a new portable oxygen unit that is allowed on most all airlines, so now it will make flying easier for me. I settled on the SeQual Eclipse2 POC ( Portable Oxygen Concentrator) because it is the ONLY unit that allows for a continuous flow of oxygen, unlike the others which just pulse dose, which means they squirt a hit of oxygen up your nose when you breathe in. Some people need oxygen all the time, even when sitting around, and so I had to find a continuous flow model and SeQual Eclipse2 met my requirements. Now, for the price.... My insurance would NOT pay a penny towards it. Their theory is....if you are well enough to travel, you are well enough to pay for the oxygen. Duh....So I wrangled the company to the lowest price I could get and walked away a happy camper. The unit will arrive on Tuesday, in time for my Saturday flight.

It's my Christmas gift to me. I bought the maxxed out model with ALL the bells and whistles, including 3 batteries, so I'll have plenty of oxygen to get me where I'm going without running out. When you are on the plane, you are NOT allowed to plug the 110 volt cord into a socket to charge the batteries. Nope. Don't allow it. You have to have spare battery power for back up in case of delays. If you are waiting in the departure area before boarding a plane, then you CAN plug in and charge there, but just NOT while flying. So bring more than enough battery juice to cover your butt. Each battery sells from $350 to $450 (rip off!!).

At home, I am still using liquid oxygen (LOX) and I have two, 40 pound tanks in my bedroom. I fill the portable and go, and it lasts about 3 hours and is empty again, and you can't fill it away from a base station. You can crank it up to 15 LPM, which is awesome! The POC can hit 6 LPM, in comparison. So now this new toy will open travel planning with ease. Every cruise I have planned for has always involved from $800  to $1,200 for the use of rented LOX 24/7. Once, Brian and I drove to Fort Lauderdale, Florida  (14 hours) with 16 E cylinders of oxygen in my SUV because this new POC choice was not available 24 months ago. Now in July 2009 when some forensic friends and I hop a cruise out of Ft. Lauderdale, it will be easier on me financially and with advanced planning and my new Eclipse2 POC, I'm off on another travel adventure! (Shameless endorsement). OK Friends.....I'll close here and head to bed. Thanks be to God for His blessings and bounty in my life.  Love Lori.......OxxXoXOo

October 21

I spent about 5 hours today at a local rifle range target shooting. I am applying for a CCWP (Concealed Carry Weapon Permit) which will legally allow me to carry a hand gun and to use it. I did very well at target practice today, shooting the target every time at 15 feet and even getting a few bulls eyes! My new marksmanship teacher is Kevin M. and he is a certified NRA Instructor. I have been an NRA (National Rifle Association) member for about 8 years but have not taken the steps needed to secure a permit. Now with the political climate the way it is heading, with the left leaning liberals trying to call the shots, the next right we will lose will be our 2nd Amendment right to carry arms. It's no secret that if the Demorats win the election, within 4 years they will make legislation that will remove gun ownership from legal, law abiding citizens and now say that only those is a recognized Militia can carry a gin. This is a right law abiding, gun toting Americans don't want to see stripped from the Constitution, so we'll have to fight for this if the Demorats take control.

So for my part, it's now time to legally apply for and secure a weapon. For the sum of $50, I'll be fingerprinted and the police will run a back ground check to make sure I have no felonies and am not a sexual pervert. So we'll see...When I get the permit, then I'll test a few hand guns and shoot a few, then buy one or two or......OK...More later...Love Lori OXo

November 7

I'm not at Disney World anymore. I'm in the hospital. Back at Duke, but I saw it coming and was prepared.

When last I spoke, I was fining for a trip to see the mouse that started it all, and I had a GRAND time with my pal Donna.

What a wonderful time I had scooting around most days discovering things and eating way too much food. Donna did a few walking tours and a steam train tour and had a good time. My plans were to go have a great time and come to Duke when needed for another CF tune up. I was afraid I'd be told NOT to come. That my CF bugs weren't allowed back into Duke after my last admission in September. But no, they welcomed me (with some trepidation) qaranteened me to my room, and locked me down. The sign on my door says "Strict Isolation...Do Not Enter."

I'll write more later as I am in need of nap time so, so goodbue until later, Lori  

                                                                                                                                                                                                                                                                               November 11

It's another fine day here at Club Med but so far, no progress to announce. Just later today did I even have a spark of energy to open up my laptop. I have not been interested, preferring to spend time napping. Guess it's my way to heal. So for those of you I have emailed back or not called back, I was not being rude, but didn't feel well enough to come out and play.

My trip to have the femoral IV line put in met with success, but with way too much PAIN! The scar tissue and adhesions make getting this vein set up so very difficult. But then I asked the doc about it and he said as long as they can get into the vein, they can always make it work. So after my 13th femoral line, I ought to be jumping for joy and not sniveling at how traumatic it was to me again.

Now the triple IV cocktail of Fortaz, Tobramycin and Vancomycin drip in. No fever, chills or shakes. Nasty sputum, and fluctuating sats are my issues now. I tried to ask the Physio therapist to take me to the gym as her last client so I could walk on the treadmill 3 days a week but infection Control said NO WAY! I am on STRICT ISOLATION and am NOT to leave my room unless a firefighter puts a ladder to my window and carries me down. Not open for negotiation. And I knew this going into this admission, so I'll abide by this and then get my freedom down the road.

I bought 8 new DVD's to keep me busy as well as some magazines and stuff to read.

Brian is planning to come this weekend and sleep over one night at the local hotel. I look forward to this very much.

I have seen one other adult with CF walking the halls that I know but none of my regular CF friends are in now.

OK...this is short  as I am readying myself for bed time. Thanks be to Lord who gave me today and allowed me to enjoy another day breathing.

Love Lori xOXOx                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        November 12

I did not sleep much at all last night. The vent and I were fighting each other. It always pages the RT when I am out of synch with it and it was a non-stop battle trying to fine tune it. Eventually at 5AM, I just unhooked the vent from my trach, and fell asleep wearing the trach collar. No great improvement to write home about. Just small steps that will eventually get me to the feeling better point down the road. The Chaplin on call came to visit. He saw my name on the bed assignment board and knew me from previous admissions, so he came by to chat. Nice guy and it was a visit I appreciated. We prayed together and he went on his way to check in on another patient. Thanks Dave.

                                                                                                                                                                                                                                                                                  I am not allowed to leave my room to walk around, so my legs and ankles are swelling from no activity. Last time I went home very weak and deconditioned, and I made myself promise not to come home like that again. So I am going to try to wear ankle weights tomorrow to give my legs a work out. It should work. I am still too sob (short of breath) to have a shower so my hair is getting neglected. Just think....10 days ago I was at Disney World having an absolutely wonderful time with my pal named Donna, and now I am here. Hey, could be worse. A lot worse. I could be dead. Things can change that quickly. Enjoy every moment of life because it can be wiped out... just like that.

I talked with my sister Dolly yesterday and also my sister Noreen called. It is getting COLD up in Canada they say. Here, today, it's  67 degrees F outside. In Toronto, it's 40 degree F. Too cold for me!  OK...time to close here since my chest is hurting and I need to crawl back in to bed to rest. Send Heath Chocolate bars! (Just kidding!!)   Love Lori                                                                                                                                                                                                                                                                                                  November 14

It's almost 2AM and I am awake with a throbbing headache. Perhaps I used my brain too much today and now this is payback. The nurses aid just came and knocked and said it was time for vital signs. I refused and sent him away. There is little reason to wake a patient to do vital signs at this hour when they are not deathly ill. It was to be done about 9PM and it was missed, but coming at 2AM does not work for me. No way. OK....got that venom out of my system....I had a wonderful visit with my friend Jennifer. She works here at Duke and we met because of her connection to CF. Jennifer has been a graceful friend to me and when I can bribe her, she'll go to Cracker Barrel to get me real good food. Sometimes it's been a chocolate bar or some cereal, but it sure helps to have a local friend. Her just turned 2 year old daughter, named Chloe, is a real gem and a joy to be with. So a visit with Jennifer made me feel special! Thanks for the Wisconsin Mac n' Cheese Jen. It was so cheesy and good!!

Today, visitors were plentiful. The Chaplin came again today and prayed with me. His name is Dave and he is at Duke until December, then he heads home to Florida with his family. A knock at my door brought the CF Social Worker in for a visit. His name is Bill and we did not talk about anything to do with social work, but rather about the school play his daughter is in tonight. I suspect it was Bill who discussed with Dr. Kussin my admission last time and the possibility of allowing me to come back to Duke with my nasty bugs. Sometimes the best person to go is not the doc, but their associates. Sometimes THEY can plant the seed needed to make a decision happen...or not.      

My legs are not getting much activity and feel heavy and swollen. You have to get out of the bed and walk, but my room is small and does not allow much room for walking. It's a silent imperfection I agreed to, for the benefit of being here. I think I might have a masseuse come in and work on my lower legs. Couldn't hurt. Brian is pretty good at it but doesn't have the stamina to massage my legs for 50 minutes, so maybe I'll hire one to come here this weekend. Sounds cool, eh?

I continue to receive phone calls from my sisters in Canada who check in on me to make sure I am still alive. When I call home, Brian puts the speaker phone on and when our cats hear my voice, they react instantly with meowing and trying to find me. They hear me but they can't see me, so they meow out for mommy Lori. How precious.

I have yet to believe I am getting any hit from the triple IV cocktail I am on. Why?  I don't feel better, Usually by day 6, I can report that I have turned the corner and am feeling less short of breath and my lung junk is getting better, Not yet. Please ask for this to happen in your prayers, that I'm on the right stuff to get these bugs beaten into submission.. Let's check in later today as it's 2:10 AM and time for my bed. Love Lori  PS: Hello to Dania in Toronto!

                                                                                                                                                                                                                                                                                    November 15                                                                                                                                                                                                                                                    Another good day to Praise the Lord for His Blessings! The Chocolate Bar Fairy came to visit.

This time, it was the Heath Bar Fairy who left a supply of Heath bars for me. Not that I need them, No way....but if you are sick, why not treat yourself to something you really like?? Heath bars, Chick Fillet Chicken sandwich and a Banana milkshake. Those items always seem to cure me. So to the Heath Bar Fairy, you know who you are, THANK YOU.    

Brian arrived about 4:45 PM for his weekend visit. He came to my room with a box filled with stuff. It had tons of mail, bills, magazines and a coloring book of kittens with crayons. I love getting mail order catalogues and get a whole lot of them. He brought all of them so now I have plenty to read. My neighbor and wonderful friend named Ruby, contributed a freshly made loaf of Banana Bread, which I gifted to the nurses. Nurses LOVE to get food, and if you want to keep the nurses happy, feed them. So they eagerly adopted Ruby's just made today Banana Bread loaf and off it went in their work room. Thanks Ruby!  I also received a few gifts to amuse and delight me, again from Ruby, and it felt like Christmas to be getting presents.

I also had a visit from a new friend named Philip. He is an elderly man whose daughter is undergoing treatment for Leukemia here at Duke. He happened to meet my friend Vicki when her father was here being treated here at Duke too. They forged a friendship and when Vicki got my email saying I was coming to Duke, she asked her prayer partners to commit my care to the Lord. So then I get a call from Philip saying his prayer chain of 2000 people are praying for ME. Wow! Today is Saturday and he is back at Duke with his daughter who is undergoing a new treatment for Leukemia, so before he got tied up with her, he hurried on down to my floor and find me and pray with me. He said all the nurses knew who I was and helped him navigate the way to find my room. He gowned up and came in. We chatted and then he prayed with me. He had to hurry back to his daughters room and he let me take his photo, here to the left. Thanks for this new friend who took time from his own worries, to pray with me. Amen!

Brian and I tried to think of ways to escape the room for a dinner break out, but no luck. We would have been found out soon, as I have IV meds hung every 4, 6 and 12 hours, so you can't be gone too long until they miss you. We thought maybe we could grab a quick dinner to go, but even that was not going to happen because I noticed my femoral line was leaking and needing changing. At last, dinner came and it was not too yummy looking, so I passed it up. I then sent Brian back to the hotel where he'd order a Salmon steak on a hickory plank with sweet potatoes, veggies of the day, and ice tea. Then he'll return to his room and scout out a strong WiFi spot so he can log into his web site and listen to his signal. This is his routine when he comes to visit me at Duke. Sunday morning, he'll have their buffet breakfast and checkout by 11AM. Then come visit with me in the hospital (just around the corner) and then be on his way home about 5PM. Then if I am still here next week, repeat as above. I am hopeful I'll be discharged next  weekend. Good Night. Lori.

November 16

Today is the Sabbath. God's Day. I woke up early because of pain. I buzzed the call bell at 4 AM, asking for pain meds, and it came quickly. I tried to cooperate with the ventilator, but when I cough, it sends of the alarm bells and whistles and also pages the RT (Respiratory Terrorist) to let them know I am in distress, or maybe not breathing at all. That brings them quickly to my room. I switched off the vent and used the trach collar in stead. The cool, humidified mist helps with the globs of blood coming out of my trach. It's not scary CF stuff, just airway remodeling from infection. As my lungs are infected, coughing irritates the lungs and coughing makes them bleed. Not a steady stream of blood, but globs. Just call them 'globs'. The more you cough, the more the glob grows. It amused the student nurse today who had never seen this before. She asked "What do I do?"  I told her to take the ketchup packs off my dinner tray. Psyched! For real?? Yup...I got her on that one. Poor Linda hates me now. She is my assigned student nurse.

Brian and I had a nice visit. We napped together in my small bed then he had to head for home. My friend Anthony called, Laird called, my sisters Dolly and Brenda called. I got email from many friends, including a long ago CF friend named Melissa who is considering transplant. My neighbor Ruby sent a package of tender loving care with Brian. It she made baked COOKIES and an awesome fresh Banana Bread loaf. I shared these gifts with my nurses and they gobbled down the goodies! Mrs. Ruby does real good baking!       

I am slow to come around and get over this nastiness this time. Today is day 10 of this triple IV antibiotic cocktail, Vest therapy twice a day for 30 minutes each time, inhaling Albuterol nebulizers every 8 hours, inhaling Colistin every 12 hours, and inhaling Pulmozyme every 12 hours too, yet I am still lagging behind. Hmmmmmm....the Microbiology lab does not have my results yet other than to say I am growing my usual friends, MRSA, Pseudomonas aeruginosa and Burkholderia cenocepacia (Gemnovar Type III). I can say I am pleased to NOT have any fever or chills. So AMEN for not being sicker, but I sure am taking my time getting over this.

Helping me with my isolation needs are my wonderful nurses. They know I am on strict isolation so they have offered to buy me things at Wal Mart. Kellogg's Frosted Wheats is my favorite cereal this month. They have also taken my laundry home and washed it for me. The perks of being a frequent flyer. They are really good to me. Thank you Nurses!

OK...Bed time for Lori. I had a wonderful day and am blessed by the many people who care for me and pray for me.  As I pray for YOU TOO. Love Lori OXXOooxxx     

November 17--Spread 'em...

Monday greeted me early this morning when my nurse woke me at 6 AM to draw blood from my femoral line. No go. The line would not budge. It was clogged off.... not good news, but fortunately, I always have a triple line put in my groin, so that left 2 possibilities.  The other 2 IV lines would infuse nicely, but would NOT give back blood. This happens when a fibrin sheath sits right on the end of the iv line and acts as a one way valve. Fluid can be injected in, but then the valve closes under pressure and nothing will come out in return. Hmmmm....Been there, had it happen before.

So the answer in simple....leave the clotted line alone and don't order routine labs. The IV antibiotics are getting hung and are infusing through the 2 open lines, so the treatment continues. Just watch the line and monitor. Next.....The pulmonary team just changed. The previous team rounded under Dt. Tapson, and this week, they have rotated and now round under Dr. Marshall. I like them both. They are good guys. We discussed where I am in my course of treatment and today is day 12. Slowly I am doing better, but the dramatic response I was looking for, hasn't happened....yet. By day 5, I can usually tell I am doing better and feel better, and my sputum volume has decreased, but so far, NOPE.

I had another afternoon visit with Bill, the CF Social Worker. He has been here for 25 plus years and is the chief cook and bottle washer in the CF program. I enjoy his visits because it is usually about things far away from CF. We talk about basket ball, theatre, family and movies. Now if I needed his professional advice as it relates to his role here at Duke, Bill is my man. No problem he'd step up to the plate and do what I needed. But sometimes it's nice to talk about things other than being sick and dead.

At about 4 PM, a knock at my door wakes me. It's the nurse manager on this floor, someone I really like. She has gone the extra mile for me many times when I needed something. Like doing laundry for me, or buying me something from Wal Mart. I ask her..."Am I in trouble?" She closed the curtain and said "Nope". OK. Take a breath and smile. I'm not in trouble. Breathe. She tells me that because I am on strict isolation, the Infection Control team has approached Dr. Kussin and asked him to do something. Now it seems that because I am here with a "respiratory" infection, and I am from out of state, AND because there is an outbreak of a respiratory germ in Virginia called KPC, all patients from Virginia must have a rectal swab done. Get what I'm saying???  I had to drop my lady Jockeys and let her swab my butt with a long, long Q-Tip. O how yucky!!  I was hoping Dr. Kussin would say I am exempt and don't need to have it done, but nope. He probably volunteered to do it himself! (Maybe not). Well, it fell to the Nurse Manager, or she volunteered, to spare me embarrassment. So I swallow my pride, bend over and let her get her swab. Done. All Over. Finished. Whew! It was not that bad. So off to the micro lab to see if I am carrying this new bug that has a cluster outbreak in Virginia. I'll post when I know.

I Googled this new bug outbreak and here is what I found:

Strains of Klebsiella pneumoniae that produce one of three possible carbapenemases—KPC—have recently been identified with increasing frequency among isolates recovered from patients residing along the East Coast of the United States, particularly within the New York City metropolitan region and Tidewater Virginia and Hampton Roads. These strains have exhibited resistance to multiple antibiotic classes, including carbapenem agents. We report a case of nosocomial pneumonia and empyema caused by a KPC-producing isolate of K. pneumoniae at a large midwestern U.S. tertiary care facility in which the patient was treated with tigecycline. Although the pneumonia was treated successfully, the empyema recurred in association with a treatment-emergent tigecycline minimum inhibitory concentration (MIC) increase from 0.75 to 2 μg/ml. Physicians should be aware of the potential occurrence of this treatment-emergent MIC increase, especially in the setting of sustained tigecycline therapy. In addition, the emergence of KPC reinforces the importance of strict infection control practices.

Pharmacotherapy

Print ISSN: 0277-0008

Volume: 27 | Issue: 7

Cover date: July 2008

Page(s): 1052-1057

The only thing that still needs fixin' is that my trach is bleeding. Every time I cough, frothy blood comes out. It's annoying and it scared my night nurse, but it's NOT anything as severe as I've had it previously. This is more of an annoyance. Means I am getting better when the trach gets irritated and I cough blood. This time, it is NOT shocking. Promise. I am OK. It's just part of having CF. So the plan is to continue with more of the same and put my feeling better hat on. Gotta get home for Thanksgiving, American style. We continue to ask for your prayer as that is the best medicine. Hugs to my family and Brian especially, Love Lori OxoX

November 18.....Plans for Discharge

Today was a good day for me. Prayers are working...I am feeling better. A little bit better. My sleeping schedule is way whacked out. I am up watching TV until 2AM and asleep most afternoons. When I am home in my own bed, it will change back to normal sleeping hours. I am still on strict isolation and it's not as bad as it could be, but it's hard because I don't have family who can go and get me things. However, I do have friends and they have kept me floating by meeting me needs. Jennifer has brought me a chicken filet sandwich from Chick Filet and other goodies when I was craving a chicken me al.. Ruby sent me Heath bars when I could not get them here. Today, a box arrived from Utah with all kinds of books and sweets, courtesy of a long ago friend named Pamela. Thanks to Bouncer and Belle for thinking of me. Plus nurse Rayner brought me 15 DVD movies to watch, so my afternoons have not been too boring.

The other news to shout out loud is I am going home this coming Sunday! This will allow me time to get ready for Thanksgiving and give me a few days to get all better before the actual celebration on Thursday. I always have plenty to be thankful for, and coming home in time for Thanksgiving is another blessing I'll pray about.. Thank You Lord for giving Duke the knowledge needed to take care of me and for admitting me for care. Time to go. Good Night my Sweet Brian and sleep well. I miss you, sweetheart. Love Lori OXxO

November 19...Change in Plans.

Change in plans..... I'm going home tomorrow, Thursday. It all began as this.....yesterday my femoral line was leaking. Every time it was flushed with saline and heparin, it would leak out and run down my leg. It meant the catheter had loosened up and was moving around, but it still infused the antibiotics. Today I got all the morning IV antibiotics well but again, when it was flushed, it felt like I wet my pants. Everything was wet. We looked at the site and saw that the line was leaking, but we only needed to get a few more days usage of it, so let's hope and pray it would last. Nope. Today at 4PM when my nurse came in, she hung the first bag of Fortaz and when she turned on the pump, I got wet again, but this time my shirt got wet! My nurse saw the fluid soaking my shirt, so that was unusual. We looked at the site by dropping my shorts and low and behold YIKES!!!   The whole triple lumen catheter was out of my vein. It has wormed its way out and was hanging, but still sutured in. Oh cripes. What to do?? We called for the nurse who came and looked at it who explained what had happened. Some how, it had worked its way out of my vein and was no longer useable. So the Resident was called. Dr. Kussin was called. Brian was called. I asked :Can I just go home tomorrow?" YIKES. Why not?? I had done 14 days and that was my best option rather than subjecting me to having another PAINFUL triple lumen line put in tonight or tomorrow for just 3 more days. The decision rested with Dr. Kussin. OK PSK....rule in my favor, please......

An hour later, the Resident returns and says "You can go home tomorrow!!" AMEN!! I called Brian. It means asking for another, unscheduled day off. His employer has been very good about this, but another day so soon?? Would they be upset? Brian took a whole day off to bring me here on very short notice. So the Resident brought in a suture removal kit and cut out the remaining sutures and that was that. I am now line free and heading for a shower! Now in all fairness, had this happened much earlier in my treatment plan, like sooner than today, I might not have gotten the get out of Jail card from Kussin. So now I am getting ready for a shower, then packing my stuff. Brian will get here about 12 noon tomorrow, then turn around and drive 4 more hours to home. Again, I am so blessed to have a husband who is there for me, above and beyond the call of duty, and also a medical team that can work with.

As this drama was unfolding, a friend of mine named Nathan Lawrenson came by to visit. His wife Tricia is a true miracle and I blog about her now and then. You can read about here at:  http://www.65roses4pattysue.com/  so as he is talking with me, I am dealing with a line problem. Thanks Nathan for visiting and for the news about Tricia's clinic visit. His little miracle baby was also with them but she did not come with him to visit because of all the germs. Nathan treated me to some Heath bars, my favorite. Way too cool that he took time to go get me a few. Thanks Pal!

So now I am psyched! I'm going home. Amen. I am glad that I am leaving soon, but glad to come off isolation and room lock down. I got a tiny little hit from this stay, but not near the turnaround I'd expected. Case in point....when I get up and do activity or movement that taxes me just a bit, I am so breathless. Gasping for air. So my way to handle this is to not carry or lift anything that puts a strain on what I'm doing. Also, turn up the oxygen to cope with this shortness of breath. So I'm punked happy to be going home, but I did NOT get the CF kick I expected. Home for Thanksgiving will be so cool!  Thank you prayer partners from all over who prayed for Brian and I. Thanks to my family who called and for friends who send care packages and goodies to me. So Brian will bring me home and then my life begin. Amen and thanks too, to the Duke 7800 nursing team who cared for me this admission. I love y'all, but you knew that already!  Love from Lori  Oxox

November 26

It's the day before Thanksgiving and I rushed around doing errands. That's a blessing because a week ago, I was in the hospital. So AMEN for this blessing, to be home, feeling OK, and able to celebrate Thanksgiving.

You will recall ALL my family lives in Canada, not a single soul here in America, and Canadian Thanksgiving was a month ago, when the weather was fairer. Brian and I will celebrate tomorrow with our dear friends here, and just having Brian to myself for a few days is a gift. He has a long weekend to stay home and help me get stuff done. While I am thankful I am home, I am not quite up to par. CF is doing its job. I could be feeling better. ......We were to be in Baton Rouge, Louisiana for a wedding weekend of celebration but the groom (who also has CF) knows better than most, why CF can put your plans on hold.

Billy, the groom, is marrying his love, Kimberly on Saturday. Billy and I met over 20 years ago at CF camp, and have remained in touch. Billy also received a gift of love, a set of beautiful young lungs from a donor whose family saw through their profound grief to say YES to organ donation. Billy was transplanted 8 years ago at Oschner Hospital, in New Orleans, LA. Now it is his turn to shine, to have to attention heaped on him. Billy is getting married and his new love is taking on both CF and transplant. Let me say Thankfully he has always done so well!! A real success story for transplant. What a blessing. So instead of being at their wedding, Brian and I quietly celebrate our Thankfulness here, at home, for me being alive. Plus also for the blessings of having such a wonderful husband as Brian. He is there by my side, through all that happens. He knew when he married me, this was his life, and he has not looked for the back door to exit. For this, I am BLESSED. God made this man just for ME! God knew I'd need a strong, emotional guy to stand by my side, and so he created Brian just as His plan dictated. What a blessing!! But it's not just today and tomorrow I am grateful for him, but EVERYDAY!

My sister Brenda called to say she has lots of snow and it is snowing now. She has 30 centimeters today and the grand kids love it. It is always good to hear from my family. I wish I could spend Christmas with them. So today, I am done running around and now it's time to rest. Tomorrow we offer Thanks for our blessings and being in a free land with so many freedoms and liberties. But remember the men and women on the front lines, will you? They are there so you can be here. They are protecting our freedom, because Freedom is not free. Say a prayer of Thanks for them too.

November 27-American Thanksgiving

May you be blessed

with all things good

May your joys,

like the stars at night,

be too numerous to count

May your victories be more abundant

than all the grains of sand

on all the beaches

on all the oceans

in all the world

May trial and struggle

only serve to make you stronger

And may beauty, order and abundance

be your constant companions

May every doubt and fear

be replaced by a deep, abiding trust

as you observe evidence of God

all around you

When there is only darkness

and the storms of life are closing in

may the light in your soul

illuminate Gods love

May you always be aware

you are loved beyond measure

and may you be willing to love in return

May you always feel protected

and cradled in the arms of God

May every would bring wisdom

and may every trial bring triumph

with each passing day

May you live more abundantly

than the day before

May you be blessed

and may others be blessed by you

This is my prayer for You

May you be Blessed

By Kate Nowak

December 11, ....Busy as a Bee

Hello Dear Friends...Nope. Not dead yet. Some of you have asked. I'm getting ready for a Christmas party here in 2 days. I really am ready, except for laying the food out and a few things that happen just before the doorbell rings and we yell, "Merry Christmas!" to our arriving friends.

When I got home from Duke during my last Club Med adventure, I took some time to ease on into getting my feet back. I was weak and kinda grumpy. Darn steroids will do that to ya. But they also allow you to breathe, so hey....it's one thing you have to do. Other years, I have spent Christmas in the hospital and it's not that cheery. I remember about 7 years ago when I was in Norfolk General for Christmas. I begged Dr. Duckett to let me go home for a few hours. Just any time home would make it feel like Christmas. He said "Yes". So Brian got me dressed and ready for the ride home. During my break out, I had 3 visitors come see me, knowing I'd be there and wanting to come cheer me up. Donna & Jim Price, and Stephen Neller came that Christmas day to see ME!! They left their family back home to travel to Norfolk for me. What a true Christmas gift...but I wasn't there! Brian scooted me home for a few hours. At home, Brian and I opened a few gifts, cuddled, and then drove back to the hospital. It was a memorable stay because people who loved me, come to see me on the best day of the year to share the meaning of love. Thank you Friends. Stephen is in Heaven now, after his life long fight with Cystic Fibrosis and then a very successful double lung transplant, gave him more time to celebrate life!

OK...back on track now....I am thinking I'll be home for Christmas, but my CF cooties are getting a foot hold in my lungs and when they get nasty, it's time to react. For now, I am happy and smiling. So on this upcoming Saturday, my family in Toronto are getting together for the big extended Morris family Christmas. There will be at least 27 of my relatives celebrating. Then on Christmas day, each family has Christmas with their respective family. Whew! We have grown so big up in the Great White North!

Yesterday, I had an appointment with Dr. Randy Garnett. I last saw him in February, when I was in the ER with what turned out to be confirmed Influenza and pneumonia. It was a meet n' greet social so I can get back on board with him and allow him to call the shots here at home. Since I am no longer allowed to be seen at the Duke CF clinic (Due to isolation issues and these CF bugs), I need someone local in my backyard, and who else but Randy?? So eagerly I went to the appointment and he was just as wonderful as always. Yes, he'll take me back. So I'm indeed a happy camper for that.

One more thing....it rained like the dickens today for-ever. Rained non-stop. My ditches were half full, with the water level at about 4 feet in height!! Our yard is a huge cesspool of water. Brian called me about 3PM to make sure I was home. Why?? There was a tornado sighting in Great Bridge. It poured so heavily, I wondered if the skylights in the kitchen would leak. (they didn't). Then my friend Shannon called right after Brian to tell me to watch the weather channel where they were showing my area being soaked and under a radar watch alert. We survived with no damage and not tornado. Just LOTS of WATER, which we need so badly. SO THANKS Lord, for the water. Send more!

OK......I'll take photos of our Christmas party and post them online, but now, it's time to close here, and move to other tasks. Did you know I pray for you? If I know you, I pray for you. Drop me a line to tell me your news. Indeed, I am blessed. Thank You Friend. With warm hugs, Love Lori  OxOXx

December 13, ....Friends

Today Brian and I hosted our annual Christmas party and what fun we had! It was a magical sucess with how well it went and how good it was to reconnect with dear friends again. We sent out 100 invitations and 67 people were here. From church folks, both our work site co-workers, to the pool cleaning company, our landscaper, our real estate agent, our general contractor and even my oxygn supply company, all these friends came together at our house to celebrate Christmas. Amen for these varied friends.

There was way roo much to eat again, with lots of variety and some interesting contributions. It's pot luck, and each person brings something to share, so there were new tates and familiar comforting ones. Thanks to all who came and celebrated with Brian and I.

How Do You Spell Christmas?
My big gripe I really dislike is when people and things call or spell Christmas as "Xmas".
When someone writes "X-mas," they are crossing out the most important part of Christmas--"Christ."

Let's leave the "X" out and keep Christ in.

We are celebrating Christ, not an X.

Bah Humbug!

I did not go to the office Christmas party today as I was feeling Bah Humbug!

A big time sore throat threw me for a nasty curve and I was not a happy camper.

A small fever last night told me I ought to have gone to bed earlier and grabbed more sleep.

I didn't listen, so this morning, I was feeling like a thousand cows ran over my throat.

Too bad I lost out on a great gathering at work.

Silly Lori.

I've got to play my cards right so I don't end up at Duke over Christmas and the days that follow.

I showed Brian my lung crap and it was awful. (He didn't gag and vomit this time).

More later.  Love Lori  OxOX

Christmas Eve......

What a wonderful day to once again, be at his evening.

Brian and I are going to a candlelight service at our church as we celebrate the true meaning of Christmas.

When you’re a child, Christmas is all about receiving gifts. 

In December, your head is swimming with nothing but images of your favorite toys. 

But the true message of Christmas is not the presents we give to one another. 

The true meaning is the gift that God gave to us, His Son Jesus Christ. 

I want to tell you about the gift God gave to us in that tiny manger in Bethlehem.

The first thing about God’s gift to us is that it came in simple wrapping. 

Some people will go to great lengths to wrap presents beautifully. 

But God’s gift came to us not in beautiful, ornate Hallmark wrapping, but in a dirty manger found in a cold cave in a little-known town called Bethlehem. 

That’s the beauty of the Christmas story. 

Jesus took His place in a manger so that we might have a home in heaven. 

The Savior was not wrapped in satin sheets with 1000 thread count, but in common rags. 

There in a manger rested the greatest gift in the plainest of wrappings.

Another thing I want to point out about God’s gift to us is that we don’t deserve it.  

Consider this: God gave us the ultimate gift of His Son Jesus Christ while we were still sinning against Him (see Romans 5:8). 

We did nothing whatsoever to merit or deserve His gift.  That is the amazing truth of Christmas.  

Despite who we are, God sent His Son so “that whoever believes in Him should not perish but have everlasting life” (John 3:16).

With Christmas just hours away away, begin to prepare your heart for the celebration of the birth of our Savior. 

Meditate on the fact that Jesus was born to die so that we might live.

For unto us a Child is born, unto us a Son is given; and the government will be upon His shoulder.  And His name will be called Wonderful, Counselor, Mighty God, Everlasting Father, Prince of Peace.  (Isaiah 9:6 ).

We celebrate Christmas in order to rejoice over God’s most precious gift to us. 

The birth of Jesus Christ is a gift from God that came in simple wrapping, as well as a gift we don’t deserve. 

But the gift of Christ also explains His purpose for humankind. 

The gift of Christ was no afterthought. 

Long before there was a stable in Bethlehem, before Adam and Eve ever set eyes on each other, and even before there existed a garden called Eden, God decided to send His Son Jesus Christ to die on the cross for our sins. 

From the beginning, God knew humankind would fall short of His glory.  

That is why the Scriptures proclaim that Jesus Christ was slain from the foundation of the world (see Revelation 13:8). 

God made a decision from the very beginning that Christ would come to this earth to live and die and rise again from the dead. 

God’s gift to us proves His purpose to redeem us.

The gift of Jesus Christ is what Christmas is all about. 

Jesus came near to us so we could come near to Him. 

Christmas is not about tinsel or shopping or gifts under a tree. 

Christmas is about the gift God gave on the tree where Christ died for our sins, giving us the gift of eternal life. 

That is what He has accomplished.  This is the gift He extends.  And if you receive it, you will experience the merriest Christmas of all.

Merry CHRISTmas!   Love Lori & Brian 

December 27.......

What a wonderful Christmas celebration we had. Brian got his best present ever...ME.

When we prayed, Brian was thankful that for a once, I was home for Christmas, and not in the hospital.

Oh what a wonderful day it was to be home with Brian and not in a hospital bed. True, I was a bit sick, but not sick sick.

Not sick enough to concede I should be at Duke for a tune up. Nope.

Christmas morning, we slept in late. Not really late for me though, as I have to get up and begin my treatments.

Even though the alarm goes off every day at 0830 AM for me, Brian often lingers a bit longer.

I am always afraid he'll oversleep and poor Taylor kitty will get a delayed insulin shot.

So no matter how much one of use tries to sleep in, the other of us is ALWAYS up and awake at 9AM,(usually it's me) so Taylor kitty is not off her insulin schedule.

So I slept in until 9AM, got Taylor her shot, and was wide awake. Brian slept in until 1PM, and needed the sleep. I didn't wake him, knowing when he's had enough, he'll get up.

So we had a lazy start to the day and it was great!

Next, I preheated the oven and got the dinner going.

This year, I was able to cook a meal. I don't know how, but AMEN I did it!

I cooked a 6 pound Hickory roasted Turkey breast, mashed potatoes, sweet potatoes, stuffing, creamed spinach, au gratin, and niblet corn.

I got to use my electric carving knife and dispatched that turkey breast in no time flat.

We sat together and just us two, Brian and I, together we had a wonderful day and meal together.

We then turned our attention to the Bible and read together the Christmas story in Luke chapter 2. Then we opened the gifts.

It's not about what I got, but more about what we were able to give that made us so happy!

People who didn't count on much, had something.

Friends who were unable to get their kids more than 3 gifts, had the $$ to do it this year.

Our ability to give to others made it a happy time for us both.

We saw how thankful people were to get a gift, and with some anonyminity, we gave larger. Amen Lord!

We also received the gift of friendship. People gave to us too! Like on Christmas Eve....about 7:30 PM, right after UPS delivered, another ring of the doorbell brought the whole Price Family to see us. Brian and I were delighted to have a visit with Jim, Donna, Carl and Dale Price!! Imagine....coming 25 miles to visit with us! We were blessed by their desire to come see us that evening. Thank you Donna and Jim, for showing us your love in action. We were overjoyed you came. Sorry I was sniveling and coughing. ... I went right to bed soon after, but the time you made to come visit on such a busy night for your whole family, was not lost on us.

I know we are fortunate. Better off then most. But in just an instant, that could all change, so for whatever you have, be thankful.

So just a day or so to rest before it's back to work and then the new year fast approaches.

My plans include a quiet night here at home, drinking Welch's sparkling grape juice, thanking God for having lived another year, and praying for the year ahead to bring me the comfort of love, friends, and better health. And a Cure for CF, of course!

Love Lori....OxXoo