When a vital organ is damaged beyond repair, the only path to health is transplantation — replacing the dysfunctional organ with an organ from the body of an organ donor. The experience can be physically, psychologically and emotionally trying for patients and families, especially when the patient is a child or teen.
Experience Journal, a project of the Boston Children’s Hospital psychiatry program, interviewed numerous children, teens, young adults, and parents about their experience through the transplant journey — from accepting their diagnoses to waiting for the donor organ to connecting with the donor’s family. Here are their stories, in their own words.
Accepting the Idea of Needing a Transplant
Olivia, 15, kidney transplant
I found out I would need a transplant on my birthday, almost three months into dialysis treatment…They were like, “We’re going to have to do a transplant. Your kidney’s not going to get better.” I cried. It was hard, like, “Oh no! My kidney’s not going to get better!” I talked to my mom sometimes about it, but I was trying to protect her feelings, so I didn’t tell her everything I felt. I talked to my therapist about how I felt.
Johnny, 28, heart transplant
I would say one of my personal mistakes was, in the beginning of my diagnosis with heart failure, I was hesitant to even consider getting a transplant because I was so scared of hearing that. Someone walks into the room and says, “You’re going to need a heart transplant in order to survive” it’s a very daunting and scary fact! My advice is, don’t be so hesitant to consider getting a transplant. Yes, it can be a very overwhelming, scary thing, but I would not trade what I’ve been through for anything.
Waiting for a transplant
Eva, 13, heart transplant
In class, I wouldn’t really pay attention because whenever the phone rang I was wondering if it was going to be for me. And I would wake up in the middle of the night thinking someone woke me up to get a transplant. But I actually got it pretty early: two months. [Later] Cooking helped. It’s just a place for me to go and escape from it all, I guess. I’ll just cook and get my mind off of stuff.
Mother of RJ, 12, lung transplant
The hardest part was sitting around waiting to find out when the transplant is going to happen, feeling like your life is completely on hold. You know, we couldn’t travel more than a certain amount of distance away from Children’s Hospital. So that I think was the hardest outside of the actual surgery and that whole piece, waiting for the transplant is very hard.
Recovering from a transplant
Eva, 13, heart transplant
The only thing I remember from recovery is that I had tons of pumps behind me. And there was a bench in the back, and people would come and visit but they’d all have to wear masks and stuff and they all looked ridiculous! And I would try to talk but I couldn’t, because I had the breathing tube in, and I would get really mad at people because they couldn’t understand what I was saying.
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!
Isaiah, 17, kidney transplant
When I first woke up from the surgery, my whole body was aching. I didn’t want to move really. But I think after the third day, after I started making progress, like taking some of the IVs and all of that out…no, when they first started having me move! The first time, I didn’t really want to because it hurt so much, but after a couple times of walking around, I started to get used to it. I liked it, because I wasn’t doing nothing all day! I liked the walking. And when I was in the hospital what made me feel even better was that I had a lot of visitors. Like, there was never a time when I was just in my room by myself.
Anthony, 20, heart transplant
I’m meeting the family soon, the family of the donator…You get to send letters back and forth, and I sent them a letter. What can you really say in a letter? Thank you? There’s not much you can say! I just let them know that they changed my life. And it turned out in the long run that that’s all they wanted to hear. I talked to them on the phone, and they really want to meet me…I think it will be helpful. Just to give the family closure, you know? So they know that what they did helped somebody. It is emotional, yes, but I think it is worth it…That’s going to be a tearjerker, I know that. I’ll be bawling my eyes out, I know that for sure!
Mother of an organ donor
As I have spoken with both the heart and lung recipients, I find it ironic that as we sat with our son, knowing we would soon be without him, the recipients and their families were each sitting at a hospital getting ready for probably the scariest moment in their lives. As we were losing our most precious son, they and their families were praying for a successful transplant. The pain we were feeling would soon be the joy they would be feeling. It is hard to say exactly how all of this makes me feel. I can never get back what I lost, but I have to see the good of what our son did by donating his organs. That is the only way I can make even a bit of sense out of our loss.