In light of Alice's (so far) successful double lung transplant, here's what I know about what she (and Tricia) can expect post-transplant. (these are facts about double lung transplant...not sure how much it translates to other organ transplants)
> Patients will be encouraged to be up and and walking around within 24-48 hours after the surgery.
> Patients can expect to stay under close watch in the hospital for 1-3 weeks, depending on how well they do.
> Patients can expect to participate in physical therapy/rehabilitation for about 2-3 months.
> There are lots of possible complications. The greatest risks are rejection and infection.
> Patients must relearn how to breath with their new lungs.
> Patients with CF will still have CF, but it will no longer directly affect their lungs.
> The average life expectancy is about 8 years, but that greatly depends on rejection/infection as well as the age and general health of the patient. We know some patients who are well past 15 years on their new lungs.
> Some patients will be candidates for multiple lung transplants.
Nate
31 comments:
It's all amazing isn't it?
Wow! I am just gonna keep on praying and believing that God will and is going to continue doing wondrous things for you guys!
I thought'd I say Hey...praying for Tricia, praying for Alice..praising God for little blessings in diapers! Hope you all have a most restful night!
Nathan & Tricia, I am another one of the thousands of people who have been checking your blog daily for a couple weeks and praying for your family. I was at Duke Med today for work and I couldn't stop thinking about all of you while I was there. I shared your story with several of the guys in Engineering & Operations at DUMC (these are the guys that keep the facility up and running). They told me everytime they're having a bad day, they go up to the 5th floor...and you know what that is! Praying for you and sending a contribution to the Trust Fund.
Tiffany, Raleigh NC
Thanks for the good info Nate.
Just thought I'd throw in my two cents (as an almost 3 year tx survivor--ha ha!)
1) I was not up and walking for about a week or so. I was sitting up and such a few days later, but walking didn't happen until I was out of the CICU. Then again, my surgery took longer than usual, so maybe that has something to do with it.
2) The part about having CF w/o having it affect the lungs confuses people. :) In my case, it meant enzymes and I had to start giving myself insulin. And no more high calorie food....sob. :( :(
3) They sure do encourage the walking! Yikes! :) My daily schedule had things like "walk around the floor" and "sit in chair." It was really exciting.
you are such an inspiration on how to trust God in what ever the world throws at you. i have no clue how it is to spend all day at a hospital with the chance of losing a loved one at any moment but i do look at how you trust in God and it inspires me to do the same. i am a christ follower but we are all human and it is easy to blame stuff on God. thanks for being an example and i know that your decision to go through with everything and rely on God was the correct decision. definately praying for you, tricia, alice, gwinneth, and everyone touched by your life. keep faith in God.
i'm confused... does that life span of the lungs mean that is how long tricia will have until she has to get another set of lungs?
I am praying for you guys! You are such an inspiration to more people than you know!!!
God bless you!
Praise the Lord for the great news all around. I'll pray for an avalanche of more for everyone.I hope you all have a peaceful night. Love your friend in Christ, Tommy
I have the sam question as "anon", will it be 8 years until Tricia needs a new set of lungs??
Blessings,
William's Mom
What great information provided. With all that God has done in just the past few weeks, I am trusting Him to provide the new lungs and I know He will continue to amaze us with His eye for details. I truly believe with all of my heart that He has big plans, over and above what He has already done, for the three of you. He is so wonderful to show Himself in such a way that even the simplest thing like a poopie diaper can bring Him praise.
He is an awsome and huge God that covers the tiniest of detail. How can we not give Him the glory in all things? Continued prayer for your two amazing girls and for their amazing man as God continues to show His goodness and blessings.
Laurie in Ca.
Nate and Tricia, Praise God! Praise God! Praise God! How awesome is your news today. We will continue to pray for all three of you.
Your story gives us even greater hope for the future of our children with CF.
How can people not believe in miracles after all that He has done for you?
Wow, this is the first time I looked past your music blog. All of a sudden, music seems pretty trivial. I do not questions your decisions in the least, I consider them strongly based in your faith. Congrats Mom and Dad. I gotta go dry my eyes now. Thanks for sharing your story with us.
Jim in SW Missouri
I'm not Nate (obviously), but I think the 8 year thing is how long people usually survive post-surgery before the lungs start to fail/ reject. But the numbers vary wildly. The highest I've seen post-tx is 10 years. Keep in mind lung tx are relatively new technology; it's not like heart transplants. We just keep pushing the survival boundaries... :)
And you can be listed again.
Hey guys! :-)
If you want to get a kick out of how you've become a household item around here. . . go to my blog and see today's picture (Tuesday). You'll notice your pictures in it! My hubby pointed it out.
www.xanga.com/gracenglory75
They're sideways because that's all the room we had between the edge of the desk and our bookcase. LOL! I sit facing them every morning during my Daddy-God and I time. You're close to our hearts as we continue to lift you up!
Melissa
Yup, seems like my question is pretty common. If the life span of lungs is about 8 years... does that mean you're basically counting down to another transplant (or death)? Or ?? This is all so interesting! Thanks for the info!
Only a parent can appreciate the wonderful praises for a poopie diaper!!! Praising God for all of your wonderful blessings today.
Thanks for continuing to keep everyone updated with the great posts, Nate. Wonderful news today. We continue to pray.
I think it's important that we all remember that each person's experience post-transplant looks differently!
Yes, while many of the facts are over-arching, some will inevitably be different. For example, in Columbus, where I had my doublu lung transplant (due to CF), they had me out of ICU in less than 2 days (which is oftentimes unheard of) but not walking for 5 days. I was out of the hospital in 13 days, yes, but I was also checked out of physical therapy only about 4 weeks after transplant, instead of 2-3 months. I just caution pre-transplant patients in "comparing" how their life is going to look from another's. Lung function, quality of life, and post-transplant complications (For example, I have medication-induced diabetes and osteopenia, but have over 100% lung function, while I know others who do not have these particular issues but have lower lung function but are still considered 'healthy) will NEVER look the exact same. After all, did God not create us all uniquely but still in His image?
Also, remember that while yes, many double lung transplant patients will be eligible for another transplant, many will choose not to do so, for various reasons. Again, each situation is different, but in the end, our Lord and Savior is still the same (Heb. 13:8).
Amber N. Metz
Praying from Ohio
I'm learning a lot through your blog and I appriciate your effort to keep us updated and informed! Glad your girls are doing good. Praying along with everyone else! Go Alice!! Melissa
This is one of the most amazing transplants. My cousin passed from CF back in 87, and a dear friend of mines daughter had CF, she was fortunate to be able to have a double lung transplant, it was so awesome to see her walk and run without being short of breath! May she be able to do the same. The wonders of medicine and heart make all things possible!
pauline
I have been reading your blog for weeks. I found it through a friend of mines' blog.
You all are in my prayers. I find myself thinking and wondering how things are going with Tricia and Gwyneth all of the time.
I have passed it along to several friends and family, who also have become attached to reading and praying for you all!
So nice to log on tonight and see the wonderful things the Lord is doing!
I found your blog through the caringbridge site for one of our friends' daughter - it's listed in your virus post. By knowing her, we have come to know a handful of other CF'ers by their sites and good news for you - two of them are lung transplant survivors in the past 6-8 months. Want inspiration for what God can do? Check out www.CaringBridge.org/
visit/AshleePoland
This young lady has been through a lot but is on the other side working hard to get to come home. She got hers the first of December and was able to fly home for a visit this past weekend! That still amazes me.
I am amazed even more by our God who is so gracious and has provided miracles through technology and science that would NEVER have been imagined 100 years ago. Your baby and your wife are a huge testament to that. I had my own miracle about 10 years ago (not nearly as dramatic but as powerful to humble me and make me realize that my God is bigger than ANYTHING this world can throw at me!
I spent hours last night reading your whole blog but am now caught up and praying for your precious family and praising God that He gave those two angels such a caring and Godly husband. You have NO idea what that means when you are the one in the bed. Praise for the poopie - I remember those days of endless waiting and wondering what was taking it so long - a week with a newborn is an eternity. Can't wait to see how the little sprout blossoms from here on out!
Keep up the incredible bedside manner and cling to your faith in the good and the bad. We learned that lesson and know what a difference it makes! Praying for continuing miracles. 10 years from now you'll be able to look back and see so many lives impacted by what you are going through right now. What a testimony! God bless and have a wonderful day!
Still praying! Have a Great Day!
My daughter (28 year old former premmie) just turned me on to your blog. Love seeing your daughter. I remember looking at my newborn and actually worrying about other mothers rejecting their new babies when they saw mine because mine was so beautiful. Looking back at pictures I realize she looked more like a worm. It took her a month to develop her full beauty. YOU however have a beauty, along with my prayers and faith that all will be well.
Nate,
Have been following your post but have lost touch the last week or so. I have not commented for a while but I wanted you to know that I am praying for you and your two precious girls! Miracles are occuring daily around you and I am amazed. We will keep praying for you all. I have come to know Kenzie through similar circumstance and I am on my knees for them as well.
With love,
Kim
Nate, me again, I was going through some of your older post b/c I figured out the significance of the rose and CF...anyway, is the part about knowing some people who are well past 15 years really true?..Also, I got a consult appt today to start preliminary work ups to get listed!
My boyfriend of 2 years has CF. He's 31 with an FEV1 of 38-42, depending on where he is relative to an exacerbation. He's really sick right now. We live together and it's hard. When I met him 2 years ago, he was being evaluated for a transplant but since we've been together, he's gained 40 pounds and his FEV1 levels have gone from 30 to where they are now.
I send you all my good energy and love. I know how hard it can be. It sounds like you all take great comfort in your church and that's great.
I just wish you the best.
I get so scared sometimes. It can all very overwhelming.
Much love,
Melody
i am 30yrs old and 10 yrs post tx. i had many hurdles but am doing well now. my husband and i started the fertility process about 2 years ago using a gestational carrier. we went through 3 failed cycles..i am now considering trying to get pregnant on my own...any input??? do you know of anyone in my position that has gotten pregnant?
@aahlert112
I'm not qualified to give you medical advice of that nature, but I can tell you that you should check with your doctors. I can also tell you that Tricia's doctors make it very clear to all of their female transplant patients that a pregnancy post TX is basically a death sentence for either or both mother and child.
Hows the Quality of life is it still Great! I have Alpha1-Atitripsin and an FEV1 of 28 I have been doing Pre Transplant Test and Evaluation I am 47 years old with a phenotype ZZ I can't wait to have the good life back again I just want to be able to run hike swim and do all the things I use to and of course get back on the Harley and take long Road Trips I live in Ca and been going to UCLA for all test and have meet others that have had transplants at Barns Jewish Hospital in Saint Louis most are post 5 years and 1 person I know of 10 years now he runs in Marathons and Bike Races I really hope to get to that point some day...
Thanks Clifford Carter
cliffycarter@gmail.com
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