After being on dialysis and having a critical illness and then going on dialysis, transplant was like the light at the end of the tunnel. So I don’t think it was the transplant that was the challenge: that was like the light. The most rewarding is seeing Lydia healthy and happy and feeling good! There’s nothing that could make us all happier, because we get to be a family, and we get to go do things together and go swimming and stuff.
Mother of Lydia, 6
A normal childhood
It’s amazing to look at him now and how healthy and happy he is! What we wanted for him all along was just normalcy. We wanted him to be a normal child and have a normal childhood. I did not want him to be picked out of the crowd as the kid with the liver transplant. And he’s not! He fits in with his peers. If you walked into his classroom, you couldn’t tell which one was Noah. He fits in. He’s energetic, he’s smart, he plays…He just takes medicine in the morning and at night and gets sick more often… As he gets older, he understands it more. He knows he needs to take his medicine, he knows what time he takes it, he knows why he takes it. We just explain to him, it’s just part of living – that’s how he is.
Mother of Noah, 5
You do get through it
I wish I had advice! I guess it’s just, you go through it and you do get through it. I remember thinking, “I will never get through this.” And you look back (and I’m sure you can relate, everybody can relate, to trials in your life) and you’re like, “How did I get through that?” But you do!
For me, just praying a lot helped a lot, and when you come here you see people who have it really bad and it makes you really stop and look at what you do have instead of what you don’t have, and that really helped me a lot. Pray, that’s all I can say. Just pray!
Mother of Lydia, 6
Absolutely no regrets
I think the idea is just that, multivisceral transplant in particular, but all transplants, it’s trading one really serious set of complications from her original disease for another set of serious complications. I mean, immunosuppression is not perfect. And new organs don’t necessarily always love living in someone else’s body, and it’s complicated!
But, you know, she’s eating now and she’s healthier. She goes to school three full days a week on the weeks that she can. And I think her quality of life is much, much, much better. And we have stretches where unfortunately we think we might come in the hospital for a day and we’re here for months, and the complications she’s faced have been really serious. But compared to her life pre-transplant, which at any minute could have been cut short, we have no regrets. Absolutely no regrets.
Mother of Meg, 9
A complete turnaround
He has had no issues to date, and we are so grateful. We haven’t had the slightest anything. He has not been hospitalized since transplant, other than routine bronchoscopies, and even that, we would go in in the morning by six, we’d be out by noon; he had one overnight stay where they were just checking his acid reflux, but nothing in the way of rejection or infection.
It’s great. Great. He can play basketball, he can ride his bike, he can run, he can jump, he can swim. He’s taking swimming lessons right now. It’s a complete, complete turnaround.
Mother of RJ, 12
At Thanksgiving, because everything had gone so well – let’s see, it had been exactly a month, and they said as long as she’s careful we could go over and say hi to my parents and all the extended family. And she was outside and she was scootering with the younger cousins, and she was running up and down the street, and we were like, “This is unbelievable.” It was amazing, that was really cool.
Mother of Eva, 13
A blessing and a curse
I think one of the things that I’ve always felt is that transplant is a blessing and a curse. It’s a blessing because to look at her, you wouldn’t know what she has been through from a medical stand-point. So she has no visible, physical disability, which is wonderful! I mean, not everybody has that luxury. But in reality she does, and people don’t always understand why this normal healthy-looking child might get out of breath carrying her books all over the school. And that’s why we taught her at a very young age to just be very vocal about it.
[Later] She’s a very unique child. Having been in a hospital setting for as long as she can remember, she doesn’t necessarily remember what it was like before she had to take pills, and she herself has grown to be a strong advocate for herself. I think she’s very vocal with her peers and her peers’ families and her classmates and her teachers about organ donation and the importance of it. She really is a very special kid.
Mother of Laura, 14
It was the first time she ran
I was standing in the kitchen and we were having a family cookout. And we have this monstrosity of a handicapped ramp out back – I mean, it’s like a maze. And I was at the kitchen washing something out and I heard feet running, and I look up and it’s Jess in a dead run and her brother’s behind her. And I’m like [gasps]. And I drop what I’m doing, and there’s probably ten people between me and the door, and I start pushing them out of the way, I mean, literally just cramming through them. And I get to the top, and I grab her and I go, “What! What!” The color was drained out of my face and everybody at this point had stopped doing what they were doing. And she goes, “Ma, the sick kid can run!” And I went [sighs of relief].
I thought she needed me. It was the first time she ran! She had no oxygen.
All in one week, she went to the movies, she was away from me for four and a half hours, she ran, and she got a boyfriend, all in one week! And I finally told her, “Honey, you need to slow down just a little bit.” She goes, “Mom, I’ve got so much to make up for.” I said, “But I can’t take it! Slow down a little bit.”
Mother of Jess, 18
That’s what we need to focus on
You’re raising a child that thirty years ago would’ve passed away by the time they were thirty. And if you raise them like they’re going to grow old and die, then you’re going to end up with a thirty -year-old who can take care of themselves and not a thirty-year-old that, “Oh my God, she survived and she has no skills on how to take care of herself!”
With transplants, or with any kind of a disease, it’s baffling to me because people want to know how long is it going to last, how long before something really bad happens or whatever – and the way our medical science goes, that could change. That could change! That is changing, it changes faster than they could write the textbooks on how it changes!
So as much as we want to know what will happen, which all of us do, I think the biggest thing is that it can be very constricting. And the thought needs to be that yes, every bad thing in the world could happen, but it may not. And it may change, and the science may make it better, and something new might happen: it probably will happen. And that’s what we need to focus on more than the numbers.
Mother of Samantha, 22
I have been blessed by you
We had our ten-year anniversary on Monday. I posted something to her on Facebook – it pretty much, I feel, explains how every parent feels about something like this.
It starts with: “Ten years ago today, Samantha received her new kidney. Happy tenth birthday to my Samantha. You’ve been teaching me since the day you were born. I learned, much to my surprise, that I was actually capable of being selfless, that I was stronger than I ever expected, that giving far surpasses receiving, and that children are truly one of the most precious gifts in life. It’s been a privilege to watch you grow into the beautiful young woman that you have become. I celebrate your kidney day. I have been blessed by you.”
[Later] The farther away you get from it, the more, as with anything, the memories become pleasant rather than negative. The farther out that we go, the more cause for celebration. You can look at it on the other side of the spectrum: for some people it would be, “Oh, God, how long is this going to last? It’s going to be over soon.” You could just be the person that waits for the next bad thing, or you can celebrate the moment that you have! She’s healthy, she’s active, she’s psychologically together better than I’ve ever seen her. She’s learning. She’s learning how to approach other patients and children that have been through what she’s been through. So she’s looking at it from a different side, and that’s been really, really therapeutic as well.
Mother of Samantha, 22