Hi! Thank you so much for checking out our COTA fundraising page!

As many of my friends and family already know, my health hasn’t been the greatest over the past few years. To very briefly summarize, I went from having about 80-90% lung function in spring of 2014 to about 35-40% in fall/winter of 2015. At that time, I had to stop doing a lot of what I enjoy. However, I was still able to work on a part-time basis and was able to get by using my supplemental oxygen as needed. I was still living a mostly “normal”, albeit very difficult, life for about 4 years. I always knew I had very little room for my condition to get worse if I wanted to keep up this routine and that it wouldn’t continue forever.

Well, last summer (2019) is when I did, in fact, get worse—not drastically worse—but worse enough where I had to leave my job. Even though I had only been working as a Pharmacist for a little under 2 years, I absolutely loved what I did and where I worked. Coming to the realization that, at only 26 years old, I simply could not keep up with even a very minimal schedule anymore was pretty devastating. My lung function has dropped a bit more to about 25-30%, I’ve been wearing continuous oxygen support since July of last year, and I can do very little of what I once could. This prompted my CF care team and I to revisit the transplant discussion.

It quickly became apparent that double lung transplant truly is my only option at this point. So, after a ton of testing and appointments, then more testing followed up by even more testing, I finally got listed for transplant at the end of February. As you can probably imagine, the entire journey up to this point has filled me with so many different emotions. I’m unbelievably excited at the idea of getting back to “normal”—to start a family, to return to work, to once again be the husband, son, brother, and friend that I’ve wanted to be all along. That being said, I’m also scared…more scared than I’ve ever been, in fact. Double lung transplant is a massive procedure and the recovery afterward is going to be very, very difficult. However, I know that I can handle it and I’m prepared for it because of the incredible support system that I have around me.

Unfortunately, the support and care that I am going to need after transplant is going to be very expensive. I’m incredibly fortunate to live less than a mile away from one of, if not the, best lung transplant centers in the country. Therefore, I do not have to relocate, but much of my family will incur huge expenses to be able to help me through my recovery, which will almost certainly last for months. To help alleviate some of the financial burden, we have started working with the Children’s Organ Transplant Association (COTA)—a nonprofit organization dedicated to raising money for transplant-related expenses for children as well as individuals (adults included) with single gene disorders such as Cystic Fibrosis. COTA really is an incredible organization with a very solid reputation for truly helping those who have nowhere else to turn when they are the most financially vulnerable.

I certainly am no stranger to asking you all for donations when it comes to raising money for the CF Foundation, but this is more difficult for me. I wish that I could cover all the expenses that my support system is going to encounter, but the reality is that it just isn’t possible. I have some of the most incredible people who are going to drop everything to come care for me when I need it and their selflessness should not be accompanied by thousands of dollars in expenses. If you are able to help in any way, please know that COTA uses funds raised to provide assistance to myself and others going through the same life-altering situation.

There are so many people who are going to be responsible for giving me a second chance at life—from the surgeons and health care workers directly involved with the procedure, to my family for being there for me when I feel like I can’t keep going anymore, to my future donor who made the ultimate selfless decision to become an organ donor, and to all of you for lending your generosity to COTA in my honor when it’s needed the most. There are very little guarantees or promises that I can make about this transplant journey, but what I can promise is that I will never take any of this for granted. Thank you all so much.

– Chris

 

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA also works with individuals of any age with a single-gene disorder such as Polycystic Kidney Disease, Cystic Fibrosis or Sickle Cell Disease. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.