Now that Gwyneth Rose is here, the focus of our life takes a huge "reverse" step back to around the first of September when we were preparing for the physical therapy that would help place Tricia on the double lung transplant list.
Tricia has already completed the required number of days of PT, but with the journey through past few months of pregnancy, a few new steps are before us now:
> Getting off of the ventilator, which means renewed strength/function of her lungs.
> Proving to the Duke transplant team that Tricia is healthy enough to be placed on the list. There is a small window of opportunity in which a patient must be sick enough to warrant a transplant, but healthy enough to have a good chance of surviving the surgery and achieve an improvement of health post surgery.
One of the transplant doctors told us (just before Gwyneth arrived last week) that it would probably be at least a minimum of 2-3 months before Tricia would be healthy enough to be placed on the transplant list. Candidates are placed on the list in order of the greatest need. We've known people who have been listed for less than 24 hours before receiving the call, and others who have been listed for many months. Tricia has two things going for her concerning getting her new lungs quickly:
> (Projected) High placement on the list
> Common blood type
> Average chest size
The surgery itself is not something I care to describe here, but it usually lasts for several hours and is incredibly delicate and complicated. The average success rate for the surgery and the first year is about 90%, with a drop of about 5-10% each following year. Tricia also has a few things going well for her concerning survival:
> She's young. Most transplant patients are much older than Tricia, which skews that 90% survival rate.
> Other than her lungs, she's in good shape (despite the past few weeks)
> Her CF will not directly affect her new lungs. (this is too complicated for my tiny brain, but) The new lungs will have a different DNA than Tricia's body.
The recovery involves a few days in ICU, a few weeks in the hospital for observation and several weeks of more PT in the Durham area. This could be a minimum of about 8 weeks, but we've known patients who have complications and never make it home. They tell us that Tricia will be walking the day after her surgery (amazing).
So, if everything goes perfectly with both Gwyneth and Tricia, we are looking at being here in Durham until June/July.
Organ Donation is one of my new passions. If you have made the simple decision to be an organ donor, make sure that you tell your drivers license and your family of your desire. If you're not an organ donor, please, take a few minutes to learn how easy it is to become one.
The only reason that people die while on a transplant list is because there is not enough supply to meet the demand.
Prayers for Tricia and for more organ donors !! What an inspiring blog!
Nate, praying that it all works out! I worked in a dialysis clinic for a while and it was truly amazing to see how fast some people made it to the top of the list. And when that call came, they literally only had a few hours!!
Praying Tricia will be approved for transplant quickly and that all will go well. Praying both your girls are having a calm, restful night(you too!)
By the way - I'm on the list!
I want to ask you to pray for a friend of mine (1. because I know you will and 2. because she's praying for you guys!). Her name is Holly and she has CF. She's decided to be put on the Lung Transplant list. She's only 15 and has definitely had a rough go of things here lately. She's very scared and needs lots of prayer. Thanks!!
Thanks for explaining things for us Nate.
I'm on the list already too. ;o)
Definitely praying for Tricia to be able to get transplant soon! Praying she grows strong and continues to do well. Will also pray for more donors. Thinking of and praying for you all constantly.
God's love and peace,
Your cousin Amy
I already pray for everyone who's on the waiting list for transplant as I saw what a huge difference it made to my son's quality of life, sadly he only got eight and a half months but what a brilliant time that was for us all to see him doing things he'd never dreamed he would do again.
Praying that Gwyneth continues to do well and that Trisha is blessed with a calm on waking and is able to communicate with you all very soon. Also that she can be put on the list as soon as possible.
As always we ask God for extra strength for you and all family and friends as you are such a vital part of Trisha and Gwyneth's recovery.
I am praying Tricia can recoup quickly and be placed on the list, at the top, asap!!
Also, I am certainly a donor - I have the little sticker on my DL and my family also knows my wishes. Hey, when you die, why leave perfectly good 'parts' in your body. Might as well give someone else the chance to use 'em.
Lots of prayers your way! God Bless, Ashley :)
Thank you so much for the valuable info! I'm glad Tricia has so much going for her! I've been an organ donor for many years now. I would not change it for anything. I hope and pray more people will sign up. Praying for you guy's everyday,all day long! Praying now for Sally as well. God bless, Melissa and family
I was wondering if they ever do a single lung transplant from a living patient. I know you can live with one lung? We are praying for you and the whole crew all the time.
My friend Talana passed on your address. I've read your blog all day with tears of happiness and hope in my eyes. I recieved a double lung transplant two and a half months ago. Through this experience I found your God. Before my transplant I believed in Him but through my surgeon, a wonderful, kind and caring Christian...I was able to discover the miracle of hope that He brings. Reading your blog re-affirms to me that the wonder and happiness that I have found with Him and through Him is alive and well elsewhere in the world. Like Tricia I am grateful to God for blessing me with cystic fibrosis and it has given me so many gifts in the form of loving family and friends.
I will pray for you and for Tricia and for Gwyneth Rose and for my donor's family and for all the others out there on the list.
Please include in your prayers my friend Cheryl who is in Vancouver waiting for her turn to breathe. And for my friend Doug who may never make it to the list because he doesn't have enough love to get him there.. not all of us are born with loving families.
With you in prayer,
Eva Markvoort, age 23.
Check this page!
Or read my blog at..
It's also worth mentioning that people should also tell loved ones their wishes. If identification is not found with an individual and they have not told anyone...
My family knows that my wish is that every single part of me that is usable....USE IT. This body is merely my earthly vessle...where I am going upon my death I won't need this body. I'll be dancin on streets of gold in a whole new form!!!! WOOHOO!~
Please visit www.livelifethengivelife.co.uk to read all about the UK-based organ donation awareness charity that my friend and I (who both have CF) set up 2 years ago and which is going very strong. Here in the UK donor rates are way behind those in the USA and 50% of people waiting for a lung transplant will die waiting. Emily and I have lost 20 young friends whose lives could have been saved by a transplant. We are working really hard to change these stats, save more lives and reduce the wait for transplants here in the UK (Average wait for lungs is 18 months).
Still checking this blog several times a day and willing Tricia and Gwyneth on. You are an inspiration to so many people and show the strength of love and determination very powerfully.
Big hugs xxxxx
I contiune to pray for strength for all of you. I made the decision this past year to become an organ donor. I now know I have made the right decision. Hang in there! God is watching over you.
Post-transplant life is great! I got my new lungs over 6 years ago at Duke. Tricia sounds like she is prepared and in shape for transplant, and it sounds like she is improving and will hopefully be off the vent soon! I pray everyday for your entire family, and am focusing my prayer on Tricia's ability to come off the vent and breathe on her own, a very fast wait on the transplant list, and a speedy recovery afterward so that she can focus her energy on helping you raise that beautiful little girl of your's!!
I pray that Tricia recovers well, and is placed on the transplant list ASAP. I also pray that the waiting time will be short, and she has a speedy recovery to be home with her wonderful husband and beautiful baby girl!
Have you seen this clip of a video made by two teens in the UK? It is not new, but I thought you might enjoy it if you haven't seen it. It's about organ donation. This links you to my blog where I posted about it. http://herdingturtles101.blogspot.com/2007/03/live-life-then-give-life_16.html
I had a blog post about being a donor recently.
I will remind my readers again and ask them to join you in your day of prayer.
God Bless you all.
Still praying here. My husbands brother died at 2 1/2 and all his organs were transplanted. It was a tradgedy to the family but he helped four people live. He was the youngest donnor in Ohio at the time 25 yrs ago. This hits home to us. Even though someone dies God's plan is so much bigger. Life is a blink of a momment and when were gone we are gone, we can help people like your sweet family. Still thinking of you each day.
We are praying for Tricia and also for her transplant. Our daughter went to be with the Lord almost 10yrs. ago. We made the decision for her to be an organ donor. It was truly an amazing experience for us and gave us so much peace! Our daughter died on Good Friday and her organ recipients woke up on Easter Sunday with new life! Her heart reciepent just graduated High School last year and is doing great! I will also be praying for Tricia's donor family as well! They have a hard decision to make but I pray that they will have the peace that they are helping so many others!
I'm an organ donor...have been since I was 18! After I'm done with it...no need in putting it in the ground. I'll be in Heaven with Jesus and can't think of a better way to pay it forward.
There's a little boy in TN that need a liver. Age 3. Been following his blog since last summer.
It amazes me that this still has to happen given all the car accidents that happen every day!
I'm still praying in SC (while it snows)!
Someone on EC freecycle posted about you guys. I am praying for all of you. My Gillian Rose was born 2 months early in '05 and is now 2.5 years old. I can understand the fears with having a premie, but I do not know the worry you have for your wife. God keep you.
Thanks so much for posting this...it is something that I like to post about on my blog. Two years ago I gave one of my kidney's to my husband and until then, I was pretty much a "organ donation dummy"...I think alot of people are under the assumption that you have to be a "perfect" match which is rare.
I have recently been trying to get people to join the bone marrow list, too.
Only good wished to you, Tricia and Sweet Gwyneth Rose,
DJ Holly Rock
You all are amazing. God is so awesome. We are praying for you in KY. I am amazed at how you are keeping your sense of humor up. I went thru cancer in 1990 and these things just really take a toll on everything. Just know that we ARE thinking of you and PRAYING for all 3 of you. Stay by her side and love on her. You are being an awesome husband. You are making God happy.
Organ donation is so vital.
My husband donated a kidney to his cousin just 4 days after we married in 2002.
That cousin has since married and had a baby. It is such a blessing to be able to pass on the gift life.
My prayers continue to be with you and your family.
I have been reading your blog for a while now, and I have had a huge awakening just this morning. I have marked my drivers license to be an organ donor since I first got it. But they will probably never get a chance to use my lungs, b/c here I am a healthy 25 year old, with beautiful healthy children, and a smoker. I just want to say that I am ashamed. I am perfectly healthy (right now) while others like Tricia are struggling to breathe. How could I do this to MYSELF????
I have made a commitment to quit TODAY!!!!
Every time I feel like I need a cigarette I will just think and pray for Tricia, and how she struggled and gave so selflessly. I am so determined I am SURE this will get me through the hardest days.
Thinking of you always and praising God for "bringing" you into my life.
Great post, good job getting information out there. I will continue to pray for all three of you as well as the family whose loved one will be Tricia's donor. I pray for God's peace and comfort for them as thet lose a loved one and make the choice to help save lives.
Just in awe and so inspired by your and Tricia and Gwyneth's story! Wow... I was asked to pray for you guys by my friend, Robin, in Verona, VA...can't remember how she knew you or knew you needed prayer, but I haven't been able to get you guys off my mind since, and have told different ones about you.
So, I will be an organ donor now, as the only thing keeping me from it was believing the lie. :)
I'm praying for you guys and I'm so thankful for your testimony and so thankful that everyone around the world reads this and witnesses your love and faith in the Lord... You, Tricia and Gwyneth are planting seeds all over the world...I loved the pics of when you guys met, dated, got engaged...I'm such a romantic...
Love and prayers,
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