Transplant Vs. No Transplant

It's been a while since I've updated my blog and it's because I've been struggling with some news that I got from two doctors of mine. It seems to be a reoccurring statement now that doing a transplant on me when the time came would be too difficult and high risk. A few weeks ago I got a call from my transplant coordinator who is trying to find a place for me to get the transplant once I need it. Neither of my parents were home at the time so when I told her she could talk to me and I'd tell them, she asked me, "You sure?" that's when my stomach dropped. I knew this was going to be bad.
She explained to me that when a hospital looks at a case for a transplant, they usually like to have a 20% chance of death or less. Unfortunately, mine a 50% chance of me dying during the operation. The reason this is is because of all the scar tissue I have in body, and something else in my body called "mapcas". (Don't ask me what they are because I have no clue either!) On top of that, there was a study done in Texas of people who got transplants who were similar to me, only half of them lived and of those half, only half of them were still alive after 3 months of getting the transplant... It's because of these reasons that we are having a difficult time getting a hospital to agree to do the transplant on me 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. Mom was out running errands and dad was at work. My sister asked me, "why didn't you just ask her to call back when mom and dad got home?" Well those of us who are in the medical world we all know how difficult and how long it takes to be able to get a doctor on the phone with you. So I told her that I didn't want to have play phone tag with her and I was tired of waiting, I wanted to know now.

There was sickening feeling in the pit of my stomach that night and I barely touched my dinner, even though we had ordered out from one of my favorite restaurants. I stayed in my room until my mom got home from a meeting she had gone to, 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 before sharing it with my readers. Even though it's been three weeks or so since I got that news, I still get this hallow 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.

When a past surgeon of mine called my mom yesterday to discuss whether or not U of A, (a college in Arizona) was still doing their transplants in connection to another hospital down there, and whether or not it would be possible for me to get my heart and lung transplant down there, I expected him to say no. Heart and lungs are difficult transplants all on their own, but combine them together, it's very difficult. So I expected him to say no, suggest a few other facilities and that'd be it.

Instead he told my mom that in his opinion, heart-lung transplants don't work. We asked him then, "So what happens when I get sick again and there are no other options but a transplant, then what?" It has been tossed around that I might live longer without a transplant, but my question to that idea is, "What happens when I get really sick again? When my heart gets too tired, then what? You'll just let me die?"

It's a difficult decision on when is the right time to get a transplant, especially with me. When I start to get sick again, there is no knowing when I might die without a transplant. I may die in five years without a transplant, but with one, 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 knowing which choice would result in a longer life until I choose one or the other... And sadly, once you choose one, there is no going back.

Yesterday when my mom told me that my past surgeon said to just "enjoy what time you have left." when I start to get sick 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. Aren't you going to 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 we did 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. It's going to be a difficult choice when the time comes, but I can't get the notion of, "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." out of my head. 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 because of the complications I will have.

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 inedible fact that my health will at some point get worse... Then what?

Hope and Love


  1. You sweet girl, you have never let your disease control have beaten the odds all your life....the doctors didn't expect you to live to see your 5th birthday....well, you showed them...a few years back you showed them again when you fought off that very bad infection...and so many other times that you showed everyone you were the boss not your try not to worry (I know that's hard to do) because worrying never helps...and stay positive...I love you....Karen

  2. I think that your courage and willingness to share this just shows even more how you're NOT letting your CHD beat you. You're continuing to use this to encourage others and remind them that they're not alone in their own walks with chronic illness.
    You're amazing, Becca.

    Love you so much and am praying for you always!


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My Life As A Chronically
Ill Young Adult
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