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Volunteer Advocate
cf insights cf insights

Organ Donation and cystic fibrosis

April is Organ Donation Awareness (or BeADonor) Month. Organ donation, specifically lung transplant, is a huge topic in our community and one that brings up a lot of emotions. We asked our community what their thoughts on organ transplantation are, and what they would like people to know about organ transplantation and CF.

“Organ transplantation is a miracle of modern science as it literally gives those who are terminally ill a new lease on life. Although there are very exciting things happening in the CF medical world, there still is no cure for end-stage lung disease other than a lung transplant. For those CF persons who are at that point it is a last chance to prolong their life. CF persons have received other organ transplants as well (pancreas, kidney, liver), but double-lung is the most common. I hope that sometime very soon, persons born with CF may be able to view lung transplantation, as a treatment of the past because the newer targeted treatments, or a cure, will make the operation unnecessary.

In July of 2003, I was the recipient of a double lung transplant because of CF end-stage lung disease. So far, it has given me almost 16 extra years of life on this beautiful big green planet. I cannot begin tell you how grateful I am that another family made the decision to donate a part of their loved one so that another could live. For this very reason, I marvel at the emotional intensity involved in the transplantation process, for the donor, recipient and their respective support networks.

Organ donation is not a cure. Going into transplant, you need to be aware of the rewards, and the risks. Is there pain, yep! Do you still have to take pills, yep! Do you need to use oxygen anymore, nope! Is there a long recovery, yep! Additionally, questions about the possibility of rejection are obviously a huge concern for people. What are the risks, can you predict it? Your medical team are experts at what they do but they cannot predict every scenario. Getting the transplant is only the first step. The recovery process in a lot of work and there will be triumphs and setbacks. No matter how strong and stubborn you are (CF traits), you will also need to have a strong support network to help you get through the process. I have been very fortunate to experience very few complications overall. I do have steroid induced diabetes, which is extremely well controlled. In addition, after 16 years I am beginning to experience issues such as reduced kidney function from the anti-rejection drugs. Having said that, would I do it again……….in heartbeat! To be able to experience the joys, the pain, the laughter and the tears of the last 16 years is something that you could never measure.  Transplant has given me 16 extra years with my family, friends, work colleges and the opportunity to assist and advocate for others with CF. So thank you donor, for your kindness, foresight and selflessness and for making your wishes known so that your family could fulfill your wishes.” – Brenda Chambers-Ivey

 

“When my doctors first brought up transplant, or in my mind, the big “T” word, I was petrified. To me, transplant always meant that you were getting so sick, so often that this was the last possible option, which was completely and utterly terrifying to me. After I got over the initial shock of hearing those words, I realized the possibilities transplant could bring and the benefits of getting worked up for transplant sooner, rather than later. Being referred to the clinic early enough, when I wasn’t so sick that I’d need to be rushed through the process quickly, allowed me to take things one step at a time and to really process the whole idea of lung transplantation. Lucky for me, my health stabilized after being worked up, so I haven’t needed to go on the list. But I’m glad the work up and prep was done so that things can move quicker if needed down the road. Transplant is scary, it comes with major risks and possible complications both early on post-transplant and years down the road, but what also comes with transplant is the privilege of time which sadly not everyone gets. Time with those you love, time to laugh, time to love, time to live. And there’s truly no greater gift than that.” – Kim Wood

 

“When I was young, I thought that everyone who lived a long life with CF must have a lung transplant in order to stay healthy. When I brought this up to my team, they of course told me that this is not the case, but that there are some people who do require a double lung transplant. The possibility of one day getting to the point where a transplant is needed is something that I think most people with CF are acutely aware of, and it is encouraging to know how far technology has come in terms of facilitating successful transplants.

I would like people in general to know that having a double lung transplant for a person with CF is not a “cure”. There are still gastrointestinal and other functional systems that experience complications, and there is still a lot to be done to try to avoid rejection. Therefore, having a transplant is not something that we consider an “easy solution” to the challenges of CF – it is a difficult, life-altering procedure that some people have to go through when there are no other options, but it does give people another chance at a far healthier and longer life, and for that I am grateful.” – Terra Stephenson

 

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