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.
Eva, 13
Mixed emotions
I felt very loopy, very, very loopy. You get mixed emotions. The steroids are really annoying because you can’t think, and it just bugs you so much.
[Later]
The day I went home my Nana came to visit. I think it was a little too early, so I was kind of just mad and everything. Like, I thought when I was going to come home it was going to be all peaceful and stuff.
Eva, 13
Even more painful for me!
It was a big improvement. Nothing to worry about, you know? It did hurt a ton though…your chest kills, it feels like a horse stepped on it. You can’t cough, you can’t laugh. It was even more painful for me, because I’m goofy! [laughs]
It was a rapid recovery: I got out of the hospital in eleven days.
Anthony, 20
Weaning off oxygen
After the surgery I woke up, and then saw my family. I was feeling, like, okay…I was in a lot of pain.
When I was in the ICU, I didn’t really do anything except try to stay off my oxygen, stop depending on it. And they tried to introduce me to the new pills I was supposed to take.
[Later] It was scary to be off oxygen at first…I just weaned off it slowly and was able to go on without it.
RJ, 12
It happens everyday
The most challenging part of transplant would probably be recovery. Recovery was horrible, and it’s still horrible, because it’s every day. To get up and move and don’t let any of your muscles die: it’s hard, it’s challenging, and it happens every day, nonstop. And it’ll always be like that. But the most rewarding is that I’m still alive.
Jess, 18
I wanted to be home for my birthday
It was very painful, because they have to do such a big incision and then they had the staples in and everything, so it was kind of difficult. I wanted to just, like, sit in bed and relax. And I had gotten so used to not being able to do things, that just the fact that they wanted me to get up and walk – I was like, “Well, I get out of breath when I walk!” But I did it, and was pretty fast.
I wanted to be home for my birthday, so I knew I had to do what they told me to and it would get me there. We were in and out of the hospital in, like, ten days. I literally left the hospital with the staples still in!
Laura, 14
RJ, 12
He recovered pretty quickly
Walter: Actually, really surprisingly, I woke up at 6:00 the next morning and said hi to my parents! My least favorite thing was probably the NG tube*, which doesn’t let you eat – I had that in. I don’t remember surgery, I don’t really remember going in, but I remember the next week…I had three JP drains*, mostly just draining fluid. I had an NG tube*, catheter*, and that’s it. Yeah, that’s it, and a bunch of IVs. I remember the first day I was in ICU and I had the rigors, which is where you shake uncontrollably. That would have been fun if I didn’t have all that stuff in!
Dad: You ripped one of your IVs out.
Walter: I did. Our nurse just took care of that. Then I came up to the floor, and all you do is walk. You just walk, walk, walk, just to get better and be able to walk. And eventually you just want to go home because you’re feeling pretty good, besides the fact that you may tilt when you walk or whatever it may be.
Walter, 11, and father
Tough recovery
It was pretty bad…I felt foggy, very, very, very sick. A lot of tubes, all of that stuff. I couldn’t eat for, like, five months…something about my intestines didn’t wake up.
I hated it, because you’re hungry all of the time. I got nutrition by IV, but it just goes right into your bloodstream so you don’t feel like you’re full at all.
I had to basically learn every simple task again – to walk, hold stuff, everything pretty much…it was a very long time before I felt back to normal.
David, 15
I didn’t know what was going on. I forgot that I got my transplant when I woke up, but when I was awake, my mom was like, “You got your kidney transplant!” and I’m like, “What?” And she goes, “You got your kidney transplant!” and I go, “Really?” And she’s like, “Yeah.” And I go, “Can I have some pudding now?” Those were my first words! “Can I have more pudding?”
Olivia, 15
I didn’t want to move
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.
Isaiah, 17
I might as well be home
After I started moving and I was keeping track of everything, I didn’t even need a nurse, I thought I might as well be home doing this. At least I could be in a comfortable place, and finally I could take a shower. Two days before I was actually supposed to leave, I already packed up everything. I was ready!
It felt good to get discharged. I was finally going to go home, take my shower, and just lay in my own bed.
Isaiah, 17, and mother