Energetic for the first time
The first two weeks you feel crummy, like a truck ran over you. But then during Thanksgiving week I felt great. I was energetic for the first time: I could actually run faster than people!
Eva, 13
Stronger
I think I’m stronger, probably socially and emotionally. Like, we have to do a project for school, make ten rules for a new world, and everyone’s were goofy, like make all the roads trampolines and stuff. Mine were more serious sort of: like I said no illnesses or pain.
Eva, 13
Infection precautions
It was annoying, because you have to wear a mask everywhere for two months. You couldn’t go out to restaurants, couldn’t see friends, couldn’t go to school for two months, which was nice and annoying at the same time…I watched a lot of TV, but then I got bored of it.
[Later]
I’m getting sick a lot, just because of the immuno-compromised system. So you have to be rude a lot, like, people are going to come hug you and you’re going to have to ask, “Are you sick?” and if they say yes, you kind of just bullet away. Just run!
Eva, 13
Feeling a different heart in your body
It was great. I looked 100% better, and it was weird just feeling a different heart in your body. Especially when they were examining the heart, like doing the echocardiogram: I was so used to my heart just being weak, like [pumping slow]. And then you watch the new heart and it’s like, [pumping hard], and it’s totally different, you know?
Anthony, 20
I was like Bubble Boy
I got put on immunosuppressants, because when they put the new organ in you, it’s foreign. The body tries to protect you and attacks the new organ, so you get put on immunosuppressants…You’re more susceptible to sickness and stuff. So for the first two months out of the hospital, I was like Bubble Boy: I couldn’t go near anybody, I had to stay in my room. Even just leaving the hospital room, you had to Purell, wear a mask…
I didn’t mind it. I understood why, you know?
Anthony, 20
Eleven years out
To be perfectly honest, I’ve been really great. Knock on wood, haven’t had any bouts of rejection or any issues with transplant since after the transplant. I’ve been doing really well.
It feels really great! Some days I’m not sure if it feels like it’s been eleven years, or if it feels like it’s been shorter or longer. I don’t know. Some days I feel like, “Wow, eleven years, I can’t believe it!” but some days it’s like, “It flew by so fast!”
Johnny, 28
What might or might not happen
I do worry sometimes about how long will I live? Not to be morbid, but I wonder how long this transplant will keep me alive. Like, will I be able to retire and live into my seventies and eighties? I don’t know how many people who’ve had a heart transplant live to be eighty. So that’s something I think about, and I know that there’s lots of research out there and it’s not enough just to say how long transplants will last…I just try to think that there’s nothing I can do about it, and I try to remind myself that since there’s nothing I can do about it, think about how much time I’m wasting by just thinking about it and stressing myself when I could actually go out and take a walk with my son and enjoy myself and enjoy my wife and my family and enjoy the time I have, as opposed to sitting and thinking about what could, might, or might not happen.
Johnny, 28
What I need to do to keep healthy
I’m taking my medications. I still have medications I take twice daily. I’m taking less now than I was eleven years ago, so they have tapered off and the dosages have lessened over time. I currently am taking medication, immunosuppression drugs to keep my heart from rejecting, and I still have to go in for heart catheterizations, EKGs, echocardiograms, stress tolerance tests, blood work, X-rays…just to name a few of the tests that need to be done once or twice a year to monitor my health…Right from the beginning I remember being told, “This is what you have to do.” And in the beginning it used to be every week, and then once a month, and then every couple months. Now it’s twice a year, and I personally don’t have a problem with it. I know it’s part of what I need to do to keep healthy. It’s not a big deal to have to do that, and it gives me peace of mind when I go to these appointments and they tell me everything looks great, because I’m all set for a year now. I know that the tests looked good, and I keep up what I’m doing and continue on with my treatment.
Johnny, 28