A Double Thanks
In thinking of one thing I'm thankful for this Thanksgiving season I'm giving double thanks for Raychel's two lungs. In particularly her donor. The decision to donate saved Raychel's life. The amount of thankfulness we feel toward that donor is immeasurable and hard to put words to.
So, in the spirit of thanks here's 5 things you may not know about Double Lung Transplant that I'm thankful for.
One
The first successful double lung transplant was performed on a female patient in Canada in 1986. That's 1 year after Raychel was born. I'm thankful Raychel was born in an era where this type of treatment is available and I'm certain future posts may explore our experience working with the incredible transplant team at Integris in Oklahoma City.
Two
One year survival rate after transplant has risen to 80% and 3-5 year survival continues to improve and is currently at 55-75%. The most common issue that arrises is chronic rejection of the lungs by the body. I'm so thankful that research in this area continues to advance and raise funding.
Three
The most common condition leading to Double Lung Transplant is Cystic Fibrosis. Raychel had a SUPER RARE condition, not CF related, that perhaps will be the discussion of a future post. This condition could actually be to her benefit as even CF patients who get transplanted have the unfortunate reality of still having CF. For all we know Raychel is now disease free. I'm thankful for that.
Four
There are several patients that have passed the 25 year survival mark. Additionally, it is not uncommon, especially among CF patients, for multiple transplants to occur if the first set of lungs are ultimately rejected. There are even some people we know that have had three different transplants! It is a blessing to live in a day and age where immuosupressive advancements and pharmaceutical research seem to be at all time highs.
Five
"Dry Run" is a common term in the transplant community referring to a failed "run" at transplanting a patient. This happened to Raychel once. We were called to the hospital with a match, prepped for surgery, sent down to the operating room, said our good byes and I love you's, and then the transplant was scrapped right at the last second. This was a terribly painful experience, especially for Raych, but prepared us for the process in a way that ultimately left me thankful for the experience. Raychel may disagree with that one.
There's an awful lot more to explore here in terms of our experience but today I'm doubly thankful for the gift of those two lungs. We like to use the phrase survivor to illustrate the "battle" that Double Lung Transplant patients go through, Raych is a "Double Lung Transplant Survivor" and that's something we will never stop giving thanks for.
If you aren't a donor consider giving it some prayerful consideration next time you renew your driver's license. That little red heart has much bigger impact than you might think.
do you have an experience to share? questions about transplant?
drop me a line below.
i respond to all comments. Especially Yours.
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2 comments
H,
Thanks for dropping a line here! I have been so impressed with the community of support surrounding Double Lung Transplant. I know we’ve received such great encouragement being a part of it.
Cheers to you!
J Bryson Baker
I too am a double lung transplant survivor almost 7 years. Also due to a very rare condition unrelated to CF. I only met 1 other person on various online support groups that had the same diagnosis… sadly she has since passed away shortly after receiving her transplant.
Glad your wife is doing well, and it is so important to always be grateful for such a beautiful gift. I enjoyed your entry.
To many, many years of breathing easy!
H. Ann
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