Hello Family & Friends,

Hello again and welcome to my attempt to entice you to come along on my journey.

I am doing this without a guide book, so all faults and mistakes are mine alone, so please see past that and join me.

I am late to report in, but I had a WONDERFUL birthday on January 16. What made it awesome were all the phone calls I received and the cards that were sent. So many friends checked in with me and we chatted and got caught up. Brian took me out to dinner and we went to a very special place to eat that has many memories for us both. My neighbors Ruby & Rudy came to visit and brought me gifts, presents, and a wonderful cake! What a delight it was to see them and their family too!

My sisters called to check in with me and they are all excited as we have a 'Sisters Cruise' coming up. What is a Sisters Cruise?, you ask. It's a one week Caribbean cruise that brings my 5 sisters together with Brian and I and forces all of us to socialize with Brian. You see, Brian is shy, and my sisters only get to see him at weddings and funerals, so I decided we'd treat all 5 of my sisters to a one week Caribbean cruise where they'd have to mix and mingle with Brian and have to have sit down dinners with us, so that when I die, they won't forget Brian. I was thinking up a way to bring them all together so they can get to know Brian and be more supportive to him when I die, and this is a great way to force social bonding in the confined space of a large ship! Isn't that smart of me?? This will bring us all together and transport them from the cold of Canada to the warmth of the Caribbean in the dead of winter, while achieving my goal of allowing them to bond with Brian and understand that when I die, they don't lose their connection to Brian and our house in Virginia automatically.They are still to embrace Brian and welcome him like the Brother-in-Law he is to them and to not forget him.

So that adventure is coming up soon, then we have a 2 week Alaska Adventure as well, going with 4 other friends, so you can see there are wonderful adventures on the horizon for us, tempered with living life to the fullest despite CF. Life is sweet and we are blessed. I'll end here and update this when something else interesting pops up.

Hugs to my readers out there, Love Lori.

January 27

Another friend with CF earned his Angel wings recently. We only knew each other because of the bond of CF and because we both chose Duke to be our provider for CF care. Outside the hospital or clinic, we never saw one another, so we intimately shared the knowledge and inner workings of the medical staff whom we have come to trust and rely on, for our care.

To say he was loved would be a hard stretch, as his family was largely absent in his life and was fed up and exhausted with his CF disease. You know you have a rotten life when you look forward to coming into the hospital for another tune up and ask for tune up after tune up on the tail of the last tune up, all because the hospital staff and and the environment here is safer than being at home. Now that life sucks!

He was such a case.

Largely disliked by his family and always on the short end of kindness, he had the heart of a child. In many ways, his body belied the 42 years old he really was, as CF had taken a beating on his body... and it showed. Thin, frail, hunched back, but always he smiled. He looked more like a kid as he walked laps around the unit, insisting he always wore his own clothes and never missed the 7AM performance of "Saved by the Bell", a TV sit-com he was addicted to. He saw a friend in everyone, and warmed your heart when he took you on as his friend. He was simple, and was more on par as a 12 or 14 year old mentality. In the end, when it came time for his Angels to come get him, it was the Duke 7800 nurses who kept watch around the clock as he lay dying. Family was not up to the task and scarce to be found. They had had so many close calls before, that they secretly wished he'd already died and been done with it all. Oh the nerve of him to drag it out.....to make his dying impinge on their time.

In the end, those who knew him the most and loved him, were there when the Angels came.

They were the ones he trusted and so it was the nursing and medical staff on Duke 7800 that bid him good bye and pushed him to hurry up and go with the Angels to the Heavens that awaited his arrival.

He was that special, that all of Heaven was waiting for him.

He had arrived.

The Angels had done their job.

His name was Jimmy.

Enjoy eternity in Heaven, friend!

I'll see you there later.

Love Lori

March 16, 2010

Where has time gone?? I have been too busy or too tired to do any updates but after many calls from my family pleading with me to write something here, I am going to do it. Life just got so good that I was LIVING. It's something you do when you feel good and want to make the best of your better breathing days. Let me admit right now though, that I am in the hospital for a CF tune up. Same old same old stuff. Nothing new here. My usual gaggle of "Friends", namely Staph, Pseudomonas & Cepacia have been beating me down and it was time to come back for IV treatment. Oh the joys of Cystic Fibrosis. I think it will be another 2 weeks until I am sent home and declared cured. Dr. Hargett is the Pulmonary Attending this month. I like him. Why? He listens to you. He is not stand-offish and lets the patient interject what has worked for them and what hasn't. So looks as though we are stuck with each other for this admission, and that's a good thing.

My 5 sisters and I, plus Brian, went on a Sisters' Caribbean Cruise in February. We all met up in Ft. Lauderdale and boarded the Holland America ship "Eurodam" and had a tremendous adventure! So many wonderful things happened to bring us closer together as sisters. We had such FUN that perhaps we can do this once a year. Hmmmm......Here is evidence that we did have FUN!

Our next adventure is Alaska. I asked Brian what HIS dream trip of a lifetime would be and he said he wanted to go to Alaska. So it is. We are bringing along our friends Ruby & Rudy, and Laird & Wynne. We thought early Spring would be nice so off we go in May-June for a 2 weeks... sailing and travel by train. The ship leaves from Vancouver and eventually we go by rail inside Alaska and into the National parks, like Denali and McKinley. This is the time when the sun shines 24 hours every day, so what an adventure the 6 of us will have exploring Alaska. I already know Brian, Laird & Wynne have signed on to do the 15 mile mountain bike trek from Skagway Alaska, through the Yukon Territory in Canada and then back into Alaska. It will be a wonderful day trip for the 3 of them while Ruby, Rudy & I go on a different adventure.

My sister Dolly and her kids (my nieces & nephews) are coming to visit in July. YEAH!! Lots of fun around Villa Morris-Hughes with my family coming. Plus I hope to skip on over to San Diego in September to visit dear friends, so I have much to look forward to in between tune ups! Oh yeah....guess I forgot to mention I also have to take on some work. Forgot about that. I did take call during the month of February and then took March off so I could come in for a tune up. But then April it's back to work doing the job I love!

I would ask that you keep these dear friends in your prayers as they are having issues the Lord alone can solve and we must pray for them. Anthony as he seeks listing for lungs and a possible liver transplant at Duke, Lori as she deals with chronic rejection of her transplanted lungs that have lasted 10 years, plus some marital issues, and Tricia & Nathan as they seek to live each day to the fullest dealing with her lung transplant issues and her little daughter Gwyneth, who is a complete beauty! Please say a prayer for each of these friends as they trust in God to provide answers to their unique medical situations.

With much love, I'll close here.

Lori XoOx

March 28, 2010

Where has time gone?? Where have I been??

Confession time....I've been in the hospital for the past month. It has been a rocky ride but the outcome is favorable and I'll be home soon. Amen for the hand of Mercy and for Healing. Brian stepped up to the plate and was at my side in the ICU rubbing my toes, powdering my back and putting lotion on my legs. Having spent way too many days of my life in the ICU, my pet peeve is always about toileting. Just when you gotta go, they bring in a tiny slipper looking bed pan and tell you to go in that little thing. Come on now...I CAN'T do it in that thing. Nope. Won't. It's a battle of wills until I win and they bring me a porta potty on wheels so my feet can dangle and I can finally go. Ahhhhhhh....relief. But I dare not drink a drop because I don't want to repeat this again in 4 hours. Blessed is the angel who invented the foley catheter. In it goes, out the pee flows.

I walked the quiet hallways last night. It was 12 midnight when I covered up and left my room to walk. My weakened legs needed to be put to work. They forgot how to work. So walked I did and returned to be greeted with my 1 AM infusion of Zosyn, then the 90 minute hit of Vancomycin, followed by a 30 minute drip of Tobramycin. There now......I'm all better.

It's Sunday and the halls are quiet way back here in the CF cootie Corner. My femoral line is still working nicely and I am the reluctant owner of a new feeding tube. I hinted I really didn't need it and could just go without it, but I was told I have too little reserve if a big medical situation should befall me, so why not help Mother Nature and just go along with the plan to put in a new one, eh? I guess I lost because I have a new one now. Somehow, I'll find a reason to be glad it's there, but getting it put in was one horrific day I hope NEVER to repeat. Moving right along, great news to report my friend Anthony has been accepted into the lung transplant program at Duke! It was decided his liver is not bad enough to rip it out so he just needs lungs. Amen for this answer to prayers! Anthony is so deserving of this second chance at life and soon he and his wife will move to Durham to begin pulmonary rehab and wait for the call.

Amen for an improvement in the well being of my friend Lori, who is dealing with rejection concerns with her lung transplant. Please just know that both these dear friends need your prayers as they seek to glorify God and live a life full of joy!

My buddy next door at home, Ruby, sent me a gift. It came in an envelope. It was a fake, plastic black fly. I am to put "Blackie" on my mashed potatoes and then push the call bell to complain. Or leave it on my breakfast tray and yell. Ohhhh the things I could do to cause mischief with my new traveling friend named Blackie. What a great gag for Ruby to have sent it to me. She is such a funny lady who can be mischievous at times. Thanks Ruby. Here are a few lines from her recent email.

See how she eggs me on? No wonder we get along so well....

My Dear Little Friend,
"....It is good news to hear that you are roaming the halls, even if it is late at night.  I know you enjoy escaping your room, if only for a walk. Too bad they don't  have a Carvel [ice cream shop] or gift shop that you could enjoy during your short release.  Guess this does mean that you have been a good prisoner, and haven't pulled any of the devious tricks that we have discussed.  Guess we should make a file for future reference, then we could also consider publishing a booklet for the other prisoners being held at Duke.  Maybe we could come up with a proper and interesting name.  How about "Causing Havoc at Duke" written by Inmate 7815 and Friend. We should be able to sell a few copies.Then another suggestion could be "Duking It Out at Duke".  Surely we are not the only troublemakers around. Maybe I need to get a job. It is scary the way I think at times. Maybe Walmart really could use me as a greeter....".

Let me also thank my family for calling and keeping track of my progress. I wish you could be here but that is not the case. Your calls and prayers kept me positive. Locally, Jennifer Caldwell was my frequent visitor who kept an eye on me too. Jennifer also is my secret supplier of Chick-Fil-A sandwiches and I am grateful for her friendship. One particularly bad night, she was here until 10PM, holding my hand and talking with me. From the Virginia side, my colleagues at work called and prayed and offered to help, so I am grateful for their input too. I'll be home soon, and after I heal a little more and gain back some strength, I'll be back to being the Lori I am.

It takes a whole team to come up a plan to get me feeling better. This time, Dr. Kussin was not my Attending Physician. He spent the month on ICU duty, so I was under the care of Dr. Hargett and his team. He was a breath of fresh air! I will say he likes to teach and it shows. He is not a "Zip in and Out" guy on rounds. I do have one doctor who IS in and out in a flash and he hopes you don't ask questions to keep him there a moment longer than necessary, but not Dr. Hargett, If anything, he is the opposite and his visits are always welcomed. It's a gift to see his critical reasoning skills at work and to jump in with my own concerns. He is a real, bedside clinician and I like him. The team under him do the day to day scut work to get you up and out. The Nursing team too, impacts greatly in your care since you are shadowed 24/7 by nurses and they get to know you. Thank you to the nurses on 7800 who cared for me. You know your job is so very important to my well being and sometimes just taking 10 minutes to sit in the chair and debrief, is a good thing. Get to know your patient and anticipate their needs. I am always welcomed back by the very nurses who had me on the last admission and ask..."Hey Lori...any travels??"

Wow.....catching up means I have so many people to thank. You know who you are. I'll be home next week and you can email or call later in the week to touch base. I am a medical miracle. I am a child of God. I am blessed.

Love Lori

April 8, 2010

The weather here is BEAUTIFUL! I see new Daffodils singing in their glory as they dot my gardens and they remind me of Springtime always. I had the AC turned on for a bit as it was quite warm outside. I have recovered from my Duke tune up and can say I am feeling very good and have not had another lung bleed since Duke. Amen for that!

My sister Dolly just celebrated her birthday 2 days ago and Brian and I sent her an edible arrangement which everyone loved. I wish I had family close by.

My CF friend Lori still needs prayer as she goes through some trying things in her life. Please pray for 2 friends who both need organ donors to give them the gift of life. Anthony needs lungs, and Matt needs a heart. Both are young guys and are in scary position of being sick while waiting for someone to die so their organs can be recycled.

Anthony was all excited and called me to say that Duke will now do transplants on people with antibodies. He told me I HAVE to investigate it because I am a perfect candidate for new lungs. So I asked. I asked one of the CF lung docs and he said "YES", they can try to remove most of the problem antibodies by cleaning up your blood in a tedious filtration process, but in the end, even with cleaned up blood and a lighter antibody load, I still have Burkholderia cenocepacia Type III which is an ABSOLUTE contraindication to transplant. Almost every person with Burkholderia cenocepacia Type III who has been transplanted in the US, has died. In fact, almost all the lung transplant centers in the US completely exclude and deny listing for lungs any CF patient with this microorganism because its lethality. It is said nobody has survived transplant who had this bug going in to transplant. Duke takes a strong stand since ALL of the patients they attempted to transplant, DIED if they had Burkholderia cenocepacia Type III going into the transplant. So it's a no go.

Brian and I talked about the WHAT IF's...........what if Duke could transplant me?? Would I do it??  NO. Why not?? The time I have had without this option have been the extra gift God has given me, and to go ahead would be certain death. As it is, I am living outside the box, on time that is borrowed, so I would NOT agree to transplant because the outcome will be poor and right now, I still have some quality of life worth living. So although I had a glimmer of hope when Anthony told me, it was fleeting as I already knew I'd say NO if offered. With Burkholderia cenocepacia Type III inside my lungs, I would NOT survive the surgery. So I am thrilled to have each day as it comes. No miracle cure for Lori. Not until I die and go to Heaven and have no CF forever.

Brian and I also attended the wedding of our friend Kelli Gower to Christopher Jordan. Kelli is the daughter to our neighbors Becky and Earle Gower and we were invited to her wedding and reception. It was such a wonderful wedding ceremony and I sat in my seat crying......the words meant so much to me when they said ...."For richer or poorer, in sickness and in health...." They hit my heart heavily. Why?? Brian has always been there for me. It's almost been 12 years since we married (April 18, 1998) and never has he left my side. One friend we love dearly, who has gone through a lung transplant for CF, recently her husband walked out on her. He had had enough of her CF issues and wanted out. What a jerk! Didn't he promise before God and the whole wedding party that he would love her till death do us part?? Well, he FINKED out and is a RAT. A Jason Rat. So their wedding vows hit my heartstrings and tugged as I cried....What a wonderful wedding it was, Kelli. Thanks for inviting us and the reception was awesome!!

With Spring comes the promise of life anew. The garden is sprouting and wonderful flowers are poking their heads above the soil. We are blessed to have each other for as long as God sees fit and each breath, each day, each kiss, is special and not wasted. I am so in love with Brian all over again. He is the man God choose for me. As we seek to honor the Lord, we grow in our blessings each day. Thank you Lord for loving me, a sinner as I am, and for dying on the Cross for MY sins. I am not worthy, but for the gift YOU gave to all who ask. Thank you Lord for loving me, as frail as I am and as weak as a Disciple I am for you. Give me my daily bread and let me see YOUR LOVE in everything I do. Amen.

May 10, 2010

What have I been up to?? LIVING....and Breathing.....I've had a few "bad breathing days" thrown in there the last month, but by far, I've had better days then bad ones, Amen, so that is my Praise! Life has kept me busy. I've also been a whirled wind of emotions as so many people I have known are either very sick and dying, or died. The Spring weather seems to bring about many deaths, and sometimes it is hard to find a happy day in there. With my CF friends, it's just been death after death after dying. They all dropped like flies, and too many at one time! Mike was not supposed to die. His CF wasn't even that bad. His worse part was his stomach and sinuses, not his lungs. Yet he died. It even shook his parents who did not expect that outcome. Mike wasn't even sick! Time and time again, IT happens. What is IT??  IT is when you end up in the hospital and they stick you on the vent and from there, you never recover. You just go downhill as every organ system fails and you die. If you'd just left him alone.....If you didn't need to jump on so and so too quickly to intubate, so and so would still be alive...If you gave so and so a day to break the fever, so and so might have won the battle this time and be alive....If you let so and so say their good byes, it would have been easier on the family.....All terrible outcomes from my CF community who were not anywhere near death's door, until the care in the hospital made them worse. I think sometimes even God is surprised when someone stands outside the Pearly Gates because that person wasn't supposed to die that day! So I've been sad. Too many deaths from CF this past month. Too many......Yesterday was Mother's Day. Doug died. Complications from his lung transplant for CF overwhelmed his body with infection and he died. His mother will forever grieve on Mother's Day for her loss. Too many adults with CF over such a short time, have died. It never ends. CF kills. It is doing its job...to kill the host. I hate CF, but the blessings it has brought me, are priceless, so you take the good with the sad and hope the good outweighs the sad so you can carry on and not be a pathetic wimp.

Last month, I shared with you some burdens on my heart. My friend Lori still needs your prayers as her transplanted lungs are playing games on her. Anthony is hoping to be listed soon for a double lung transplant but he is discouraged with the run around he is getting. He needs a firm decision either way. Matt is home now, with an LVAD (Left Ventricular Assist Device) in his chest which is piggybacked on his heart to help it pump. He is waiting for a heart transplant. Doug's death is so fresh, his family is having a hard time with it.

When it's my time to die, please don't cry and boo hoo forever. When a born again believer in Christ has that surety in Salvation because of the gift of Life that Jesus gave, we are not in the grave. We are alive, in Heaven, rejoicing! I don't want a boo-hoo fest for days and months. Get over it. Move on. Remember me for the wicked sense of humor I had and for my need to help others. Best of all, know that I am LIVING and breathing as never before, and I'm in my Father's House. So wipe up the tears and know that I am more alive than ever before, because as a child of God, I am ALIVE and no longer suffering. CF will have won the fight, but it ends in the grave. My soul goes on forever in Heaven, where NO evil can ever touch it and where God sits on the throne of righteousness. Amen!

The Point of Death - Mark 5

In my personal time with God, I picked up my Bible and turned to the back where I looked up the word "sickness". I was led to turn to an interesting story found in the Gospel of Mark, chapter 5 that begins with a family surrounding their very sick daughter. In the text, this little girl is so ill that as a last resort, her father goes out to find Jesus because, according to the father, his daughter is at the point of death.

Note that it is interesting that that the father says she is at the point of death, which implies basically her situation had gotten pretty much hopeless and she was really bad off. If she doesn't get immediate help, as in 911 NOW, she will die.

Question for you to think about: Why did this family wait until she was on deaths door, before they came to Jesus?

Many answers will vary, but I think that all of them will bring us to the same conclusion, which is that they did not come to look for Jesus.... until they came to the end of their rope.

Maybe this family had, in the initial stages of their daughters illness, tried everything possible. They probably tried the local village doctor, they maybe tried the 'handed-down-for generations' family remedy, and they probably even tried whatever their friends advice had been given to them, yet nothing seemed to work.

It was not until it was clear that if something were not done immeediately, this girl was going to die!

We are sometimes the same way. We try endlessly to deal with the perplexing problems and concerns of our lives in our own wway, trying to fiqure out how to solve them without embarassing ourselves or making a fool of ourselves. No matter that some of these problems are really beyond our reach or control, it still ends up frustrating us and leaving us even more confused in the end. Why not take even the small matter to the Lord? Why not put all your worries in His hands, even the ones you feel you can deal with yourself?

We would save ourselves a lot of headache and heartache if we simply put every thing, from the small things, the medium sized things and then the really BIG things, in His hands. The songs writer says, "...O what peace we often forfeit, o what needless pain we bear, all because we do not carry EVERYTHING to God in prayer...".

Don't wait until your particular circumstance, problem or situation is at the point of death before you take it to Jesus, give it to Him now and invite Him to deal with it today.

God bless