Muscular dystrophy
We went in for an annual heart exam, and they found out that my heart was a lot weaker. It was pretty weak! I think the average heart is four inches – mine was eight. There was a lot of backflow.
I went for the exam because I have muscular dystrophy. The heart’s a muscle, so just precautionary. They’re not sure if the muscular dystrophy is what caused the heart problem.
[Later] I was just worried. I was more worried about not being able to play basketball anymore!
I was confused. I couldn’t believe I had heart issues. I didn’t feel like I had heart issues or anything, so it was kind of aggravating, because I couldn’t do what I wanted to do all the time…I kind of just looked past all of that, and worried about how could I get better.
Anthony, 20
The chemotherapy had damaged my heart
I had some short-of-breath episodes and went to the doctor. They thought that it was a recurrence of my liver cancer as a child, ran some tests, thought it was pneumonia, and sent me home with an inhaler and antibiotics. I continued to decline. I could tell something was wrong so I went back to the emergency room locally and they ran some more tests and finally an echocardiogram had shown that my heart had tripled in size due to the chemotherapy treatments I had received to treat my cancer. The chemotherapy had damaged the left ventricle of my heart. So at that point I was transferred to Boston’s Children’s Hospital to undergo testing and more treatment to figure out what should be the next step.
I had a defibrillator implanted, and the goal in the beginning was to get me treated with medications and strengthen my heart without the need for a transplant. I continued to decline and in June, it was decided that I would need a transplant in order to survive.
Johnny, 28
First sign of a problem
I was having these sharp pains in my chest that, like, shot back. And my mom said those were classic signs of gallbladder, because everybody in my family’s had it taken out but me. So I was like, “Oh great, I’m next!” I just thought it was that. But then it kept getting worse over the day, and it would like interfere with my breathing. I couldn’t move, and it was just so bad.
[Later, while moving from hospital to hospital] I had no clue what was going on, because no one said anything to me. So I was like, “Okay, I’m just going to go along with it.” I was scared! I didn’t know what was going to happen…It went by so fast that I had no time to think.
Jess, 18
Diagnosed with pulmonary hypertension
They told me literally, “Think of plumbing…It’s like the pipes are squeezed or bent, and there’s no way for the blood to get into your lungs and out oxygenated.” And I was like, “Okay…so what now?” Because it was kind of all they said; that’s kind of how they put it and then left it like that for a while. And I was like, “Okay, so, where’s the pill? Give me medicine so I can go home.” But they were like, “No, it’s not like that. It’s life-threatening.” I was like “What?!” It was kind of a wake-up call.
I think when I found out I had my nurse with me, and he sat there and I cried and cried and cried and cried. My mom vanished. My sister was with us at the time, she was in the corner crying…because we didn’t know what it was, but we knew it wasn’t something that could be easily got over. I was just thinking, “Am I going to live?”
Jess, 18
A very rare disease
Walter: I needed a transplant because I had a very rare disease called Crigler-Najjar, which meant I did not have an enzyme which produced bilirubin.
Dad: Which conjugated bilirubin.
Walter: Yeah, it couldn’t get rid of the bilirubin. So I needed a transplant because it acted as a poison, and my only cure was the sun or blue lights, which is very interesting! Then we decided to sign up and one wonderful day we got that really nerve-racking call, and we were off to Boston to get a transplant.
Walter, 11, and father
My bones weren’t calcifying correctly
At birth, my left kidney atrophied, but they didn’t diagnose me because I guess they didn’t see any problems until I started experiencing growth problems. At six months old I was diagnosed with hip dysplasia and had that fixed. Unfortunately, what I guess the hip doctor had noticed was that my bones weren’t calcifying correctly and I wasn’t growing. So he sent me to nephrology in New York, and then they diagnosed me and I was put on growth hormone and a bunch of other medications to prevent further renal failure…my official diagnosis was dysplastic and cystic kidney disease.
Samantha, 22
Born with a gastrochisis
My health condition right now is totally fine and normal, but I was born with a gastroschisis, I think it’s called: basically a fancy term for the skin on my abdomen when I was born wasn’t fully closed all the way. So the intestines were exposed to air, which isn’t good I guess, and they just were in really bad shape. So I needed a transplant obviously for that because they just weren’t working. And because they weren’t working, I needed to have a lot a lot of medication and treatments done, which also then started to cause my liver to fail. So then I ended up getting a liver transplant too.
Katie, 19