Editor’s note: At ACHA we know that life with CHD, as well as living with the prospect of a transplant, can be scary. If you need help managing struggles such as the ones that Becca illustrates in her blog post below, don’t forget that you can always contact ACHA at 800-921-ACHA or H2H@achaheart.org with any questions or concerns. We are here for you.
I've been struggling with some news that I got from two doctors of mine. It seems to be a recurring statement now that receiving a transplant when the time came would be too difficult and high-risk. A few weeks ago I got a call from my transplant coordinator. Hospitals have criteria when deciding who can have a heart transplant and she said one of these is that they usually like to have at least an 80% chance of surviving the transplant. Because of all the scar tissue I have in body, and something else called MAPCAs (major aortopulmonary collateral arteries), I only have a 50% chance of surviving the operation. We are having a difficult time getting a hospital to agree to perform the transplant when the time comes.
I hung up the phone and just cried onto my kitchen table. I've gotten bad news before, but my parents had always been there to hold my hand and comfort me. My sister questioned, "Why didn't you just ask her to call back?" Well, those of us who are in the medical world know how difficult and how long it takes to be able to get a doctor on the phone. So I told her that I didn't want to have play phone tag and I was tired of waiting—I wanted to know now.
There was a sickening feeling in the pit of my stomach that night and I barely touched my dinner, ordered out from one of my favorite restaurants. I stayed in my room until my mom got home from a meeting, needing to be comforted by her. I didn't tell a lot of people about the statistics until now, because I needed to work through them and cope with this news on my own first. Even though it's been weeks since I got that news, I still get this hollow feeling in the pit of my stomach and I feel as if I could throw up if I think about the “what if's” of my future.
It's a difficult decision to know the right time for a transplant. No one knows when I might die without a transplant. I could die in five years, but with a transplant, I could die in three months because of rejection and other complications. Obviously I'd choose living for five more years, but there is no way to know which choice would result in a longer life, and sadly, once you choose one, there is no going back.
When my mom told me that a past surgeon she had spoken with said to just "enjoy what time you have left," instead of getting a transplant, I couldn't stop crying. I felt abandoned, let down and like someone was giving up on me if they wanted me to make the choice to not get a transplant.
I asked my mom, "What if we say no and I die? Won’t you live the rest of your life wondering if I'd still be alive if we had done the transplant?" It's true, but she pointed out that if I had the transplant and I died during the surgery, she'd wonder for the rest of her life if I would've lived a little longer without it. The choice will be difficult, but I can't stop thinking, "At least I'll go out fighting if I get transplant. At least I'll know that we did everything we possibly could instead of letting this disease control me." What makes it even more difficult is that there may not even be a hospital that will even accept me into their transplant program in the first place.
I keep my mind positive by reminding myself that at least I'm not sick now. At least my health is doing as good as it has been in years. And now I just have to do whatever I can to keep myself as well as possible, for as long as possible. But I still can't help but worry about the inevitable fact that my health will at some point get worse... Then what?
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