This year marks my 20th anniversary of having a heart transplant.
When I was a lot younger, probably in my teens, I was at a telethon raising funds for the Heart Institute. I liked doing these telethons and telling my story on TV when I had the chance. Every time I told my story the phones would start ringing like crazy with new donations. I think this phenomenon is what led me to realize that just telling people what I went through could make a difference and even save lives. That’s all I’ve wanted to do ever since.
At one of these telethons, I ended up sitting in between my mom and a fellow heart transplant recipient. It may not have been evident through my shyness, but I was always really excited to meet a fellow heart recipient. It made me feel less like a weirdo and reminded me that I wasn’t alone. He was older than me but still pretty young. Of course, I was still always the youngest, but that’s ok. Meeting someone like me made me feel like I had a friend. Unfortunately, that’s also when I learned that transplant recipients are people – though a lot of us are the best kind of people, illness, disease, and the need for a transplant doesn’t just affect the good ones. We chatted in between phone calls and I told him that I had a heart transplant. He said he had too and I was automatically excited! A friend! I’m not alone! Then he said something I will unfortunately never forget. “That means 20 more years for us!”. Uh what?
I didn’t understand. I turned to my mom who was visibly upset. I turned back to the guy, horrified. He was clearly bitter and angry in general. I can understand that. I’ve had moments like that too. Why do I have to go through all of this? Why is it so hard? Why so many painful procedures? I was sad that the whole front of my body was covered in scars as a teen. Neck, chest, stomach, thighs. Scars everywhere when I had zero before. I never thought I’d be able to wear a bikini or feel good about my body. I wore t-shirts that when up high and even had custom bathing suits made that hid the top of my chest scar. I still wear scarves when I don’t want to deal with stares or comments. I was afraid every time I went back to the hospital for tests because of the little voice in the back of my mind that would always say “maybe this time they won’t let you leave”. In other words, maybe this time they’ll find something bad. Organ rejection is always on our minds, always. Every little flutter, every beat that seems off, every time we’re tired for no reason. So, I understand being upset and scared. Especially if you also believe we only get 20 more years. We go through all of this for only up to 20 more years? I think I was already at year 10. That meant to me that I would only get to age 33. Then poof. All my fears would come true. If I even made it that far. Would any of my dreams come true? How could they when I was so busy being afraid and trying to recover from all of the hard things I had to deal with?
After I saw my mom’s face that day, my first instinct was to be angry at this guy. I was so mad that this angry, bitter person had upset my momma! Did he not know what she had been through? Her kid almost died and this asshat is going to come along and tell her I’m not going to live that long anyway? What the F is that? But now I just feel sorry for him. I feel bad that he was that scared all of the time. I feel terrible that he truly believed he was only fighting for a maximum of 20 more years. Because it’s just not true.
My first instinct was to tell my mom “boy are they in for it when I’m still around making demands at 105 years old”. I’ve been saying it ever since! I have never been more determined to prove someone wrong in my whole life. But did I fully believe it? No. Here’s the cycle my thoughts go through:
Me: “I’m doing great! I’m like a normal person! No one even knows and that’s because I’m a normal healthy person! 20 years that’s going to make a lot of newbies really happy. I’m going to help people just by living my life. Pretty awesome.”
Me again: “…oof but 20 years. That myth said 20 years.”
Me interrupting my own thought: “Hey you just called it a myth, you know it’s not true right?!?”
Me responding to myself: “Yep, nope, it’s definitely false. Remember the people you met that were 32 years post transplant? Remember how the oldest living recipient is in his 80’s? Remember how you were so young that they don’t even have stats about you yet?”
Me circling back: “Yeah, and I’m pretty sure my positive attitude is partly why I am doing so well. Right? But if I’m worried about this myth then I’m not being positive so I’m putting myself at risk!”
*Panics causing heart rate to increase which causes further panic*
I then have to try to diffuse the situation that I just created myself in my own mind and then get back to my regularly scheduled programming: living my life.
That one comment has been haunting me for so long. And now here we are year 20… during a global pandemic… with multiple outbreaks at my transplant hospital which has led me to cancel my annual heart checkups (that I have never missed). Not only that but the COVID-19 death rate for heart transplant recipients based on a small (thankfully) study was 25% … HAHA really? Am I the only one that finds this funny? Like what are the odds that after 20 YEARS of being low key worried about staying alive, I would reach year 20, my supposed “expiration” year, during a GLOBAL PANDEMIC! HAHAHA.
(I’m sorry, I’ve been alone for a whole year and I may have gone a little mad here but I find that hilarious.)
WHEN I get through this year, if I don’t feel like I am the toughest, baddest b**** out there, somebody smack me. OK? And If I wonder what the hell you smacked me for, print this off as your permission slip.
Well, if you have gotten this far through this month’s story time, I have an announcement. Since It is year 20 (woot woot!! That’s right! I’m going to celebrate it! Not fear it!), I have decided to dedicate my blog to telling my transplant story in real time starting in the next couple of weeks. This means I will be posting the whole story as I remember it, as it happened, when this whole life shift started in June of 2001. I hope you’ll stay tuned! 😉