Editor’s note: This is the story of Isaiah, age 17, and his experience with dialysis and kidney transplant. Isaiah was born with posterior urethral valves and eventually developed end stage renal disease, or kidney failure. He was treated with dialysis, the process of using a machine to remove excess waste and water from the blood. Dialysis acted as an artificial kidney, taking over for Isaiah’s failing kidneys until he was ready to get a new one through transplant.
To read more about Isaiah’s story from a Transplant perspective, go to the Transplant Experience Journal.
Everything was all negative then
Mom: They first talked about dialysis because it seemed like his creatinine was going up. They started to talk, and then a year went by again, but that first discussion about the dialysis, Isaiah fell apart.
Isaiah: I just cried, I know I just cried.
Mom: You cried, and you kind of went into a shell of moping. And that’s when everything was negative, everything was all negative then.
Isaiah: It lasted about for a couple years. I think I actually had depression then, because all I did was sleep. And I used to always think I might as well not be living. And this is after we moved too – you moved me away from all my friends, and it was just hard…I barely got through it.
Mom: I think he had a lot of support. He had a lot of people trying.
Isaiah: I think church helped me and after that I got better. Then I started being social again and making friends, and then over time it got better.
That’s when I saw the maturity
Mom: When he actually had to go on dialysis, we came in for our appointment. And usually we go to the clinic first and then they tell us to go to lab, but that day they told us to go to the lab first and then come to clinic. And when we were seen by the doctor, the doctor came in and she said his blood levels were too high, he had to go on dialysis immediately. I’d been holding it in all this time, but that was like a slap in my face! Cause I knew it was coming, but I think it was like a reality – “Oh my God, he’s really sick!” I think I managed to get through those whole 17 years by knowing he’s sick but not seeing. You know, you’re doing the cathing, you’re taking the meds – it was all this preventive medicine, it’s preventing this. But he’s more thinking, “Oh my God, I’m sick.” He’s grasping it, “I’m sick,” and he’s looking at how it’s affecting him. And I’m more like, “Oh, he’s sick, but we’re doing all the preventive things to keep him healthy!” And then dialysis was like, whoa – it’s up a notch. It’s up a few notches now!
I left the room to pull myself together. When I came back in, I said, “Isaiah, honey, how do you feel?” He said, “We knew this was coming. I did my crying.”
That just made me feel – because I know how he was throughout those years of depression – to me, that was the icing on the cake. Okay, he’s now beyond that, where he’s kind of dealt with it and he’s able to accept it and now he’s ready to go through it. That’s when I saw the maturity.
I’m going to get through it
Isaiah: It wasn’t even a shock, because every appointment they were always telling me negative stuff, there was nothing positive. So when they told me, I knew it was going to happen. I think the first time they ever mentioned it and I cried, I think after that I never felt bad. And after they told me I had to go on dialysis, I was thinking, I’m going to get through it and do what I have to do so I can get a transplant.
Mom: I think everybody in the family would say I babied him or spoiled him, and I think part of that was that them being in denial of how sick he was, and when he went on dialysis I think that’s when they were all like, “He’s really sick!” But he’d been sick all along. But I think the dialysis was the wakeup call.
At home it was the same thing
I think after I started dialysis I got closer to my brother and sister. I think when I was younger they were more mean to me. I felt like they used to, and my father, they used to tease me about some of the stuff that I had to do, and some of the stuff that happened to me. I didn’t have control over it.
That stopped after I started dialysis. I’m still shy, but back then I used to be really shy and conscious of whatever I say and whatever I do, because I felt that everybody was judging me. Because when I would go home it would be the same thing.
My first time
Isaiah: My first time it was strange. I was kind of scared, and when I started seeing the needles, they were way bigger than the little drawing your blood needles! So that was a little bit scary. But then after that it was okay. I never felt sick on dialysis in the beginning. I enjoyed it kind of, because I bonded with the nurses and did my homework and I was just relaxing.
So it wasn’t that bad, but then towards the end before my transplant, I started wanting to get out of it, because I started realizing it’s three times a week – Saturday mornings I’ve got to wake up early and I’ve got to leave school early Tuesdays and Thursdays. I would leave school at 12:30, get to the hospital by 1, get on by 1:30, and then I wouldn’t leave the hospital until like 6. So all I would get to do was take a shower and go to sleep.
It’s not as bad as I thought
Isaiah: I thought it was going to be so horrible. How they used to describe it when I was younger was not how it actually was. I thought it was going to be extra scary – I thought they were going to take my blood out, clean it and put it back in. I don’t know. It’s still painful, but it’s not that bad, it’s not as bad as I thought it was going to be. I can still do my homework, I can listen to music, I can do all that stuff while I’m on it.
Mom: It the atmosphere, it’s the environment that makes it different, and the nurses over there.
Missing school for dialysis
Isaiah: One of my teachers was thinking I was skipping everyday at the same time twice a week, even though before I even had her class I pulled her aside and I told her, “I’m going to leave school early on these two days, so I’m not going to have your class. I’ll try to turn your homework in before I leave,” and blah blah blah, stuff like that. And then one day (my friend told me this, I didn’t even know that’s how she felt) my friend told me that she said something about how she knows I skip her class and make excuses.
Mom: The Children’s Hospital even had a meeting with the school! After he got on dialysis, we got the schedule, we got a letter. Isaiah brought the letter in to the guidance counselor, and I happened to go up there because Isaiah was saying that the classes he was missing in the afternoon, they weren’t giving him an excused absence. So when I went to the guidance counselor, he’s telling me, “Oh yeah, I got the information, but I can’t share that with the teachers!” And I said, “What do you mean you can’t share that with the teachers? How do you coordinate what’s going to happen for him if you don’t talk?” So he said, “That’s all confidential.” That’s what he told me – it’s confidential, he could lose his job. So him and the nurse are sitting on the information and they don’t share it with anybody!…I had already got another letter from Children’s Hospital and we made copies for all the teachers and Isaiah personally gave them to each one of the teachers. Then the nurse came and was like, “I still would like a letter every time.”
It really was affecting him
Isaiah: I think after I spent a good year on dialysis, that’s when it started affecting me in a bad way, in a negative way. Because it was affecting me in a positive way in the beginning – I was eating more, I had an appetite – but towards the end that’s when it became negative. I started getting real itchy on the machine and I started getting sick, like light-headed and all that other stuff. And I was always tired after. I would sleep all day.
Mom: Even his nieces who he loves spending time with –
Isaiah: That’s what let me get through it too! My oldest niece, she was like my little sister.
Mom: But he didn’t even have energy for her and she noticed. They would come for the weekend, but then Isaiah was going on dialysis on Saturdays and she’d think, “When he gets home, he’s going to play with me and we’re going to have time together!” Then Isaiah would come home, and she’d say, “Isaiah just slept the whole time! He doesn’t like me anymore!” He would be asking for them to come, but he didn’t have the energy when they got there. So you could see towards the end how it really was affecting him.
Transitioning to transplant
Isaiah: When I first got on dialysis, it was something new, and I was always asking the nurses questions and learning and all that stuff. I guess that showed both the nurses and the doctors that I’m kind of ready, I’m getting there, closer and closer to when I should get a transplant. So my nurse was always suggesting it, but I wasn’t looking at transplant really. I don’t know, I guess I was just comfortable with dialysis. I wasn’t sure how the transplant was going to be.
Mom: All we kept hearing before was they want to make sure you had a good frame of mind, the right mindset for a kidney. When we had the family meeting, Isaiah found out in that meeting that he was still going to have to catheterize. And when we went home, Isaiah said he did not want to have a transplant. I said, “You’d rather stay on dialysis?” and he said “Yes.” He said there was no benefit if he still had to catheterize – that was the benefit! So he was assuming that the catheterizing would end when the transplant came. So you could tell how he was feeling about that!
Isaiah: I was kind of mad because I felt like my whole life my mom used to say I’m not going to have to catheterize – like eventually I’m not going to have to, if I get a transplant. So when they told me that, I was just like, “So what’s the point of the transplant?” And then they told me so many symptoms, like what can happen from the medications after you get a transplant. And I was like, that’s more than what dialysis does! And I got scared and I didn’t want to do it.
I think it was my nurse that more encouraged it and the doctors, because they kept telling me they think I’m ready – and I think what really made me ready was I started getting sick on dialysis. If I never got sick on dialysis I think I still would be doing dialysis.
Waiting for a kidney
Isaiah: It was torture. I felt like after the first week I just couldn’t wait. Any time the phone rang I would check. I was just getting antsy because I was feeling horrible on dialysis and I just couldn’t wait to get off. So I was just waiting – I couldn’t wait!
Mom: Everyday Isaiah would say, “Oh, it’s not going to happen, it’s not going to happen…” He was starting to get back into that negative mode, I call it. And I said, “Isaiah, it’s only been a couple weeks!” “No, it’s been more!” So that’s why I got him the calendar, and I said, “Okay, so everyday, just scratch off a day. Don’t think about it, just scratch off a day.”
And then one day he’s like, “Mommy are you praying I get a kidney?” And I was like, “Isaiah, are you praying that you get a kidney?” I think it was the next day I was going to work. My job is pretty flexible and I can do some work at home, so I was debating whether or not I was going to go to the office in the morning and do some work on the computer and then go to my appointments, or was I going to stay home and do my work on the computer here. And what I ended up doing was going to get my coffee and then I decided I was going to come back home and do my typing. And I got a call, and when I pulled up to the driveway I see Isaiah outside – he’s jumping, he’s all happy, he’s on the phone – and for me it was like, “Oh my God! It’s really happening!”
Getting the call
Isaiah: When I got the phone call, I was outside in the yard, just jumping around, and calling everybody, telling them I got my transplant…My mom came home and walked past me like I’m just some weirdo in the yard! She still didn’t know!
The nurse called the house phone, and it wasn’t even their number, but I answered it. Because like five minutes before that, some phone company or something called, and then I answered it again and it was her. And then I kind of just knew, because I’m like, “Why would she be calling me?” So then she said that I had my transplant and she was just asking me, do I have a ride, is anybody home, and all that stuff. And I was like, yeah.
But the nurse told me that she called my mom before that, so I thought she knew…and then we finally hang up and my mom asked me, “What’s wrong with you?” and I was like, “I have my transplant!” And I think she was just shocked.
Recovering from 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!
I didn’t really want to be there
Isaiah: When I was in the hospital I think I was starting to get negative, because I didn’t really want to be there.
Mom: Yeah, when he was in the hospital, he was slipping back into that and just complaining, complaining, and complaining.
Isaiah: If I stayed there any longer I would have been right back to that! 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 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.
Wow, it really happened!
Mom: It still didn’t hit me until I think after he was getting out of the hospital from the transplant. Even the time we were in the hospital, it still didn’t really sink in until he came home and he was on a new regimen. And he was taking responsibility for his pills and weighing himself – then it was like, wow, it really happened! I just saw him mature quickly…I didn’t see that before the transplant, it was after.
I didn’t want to mess it up
Isaiah: I think being in the hospital and them putting me on a schedule helped a lot. Like wake me up, bathe me – and they used to have me interact and do the stuff too, like weigh myself and all that. So by the time I got out the hospital, I got used to it and could do it myself. And just proving this lady over here wrong! Because she started to say, like everybody, “Oh, you’re going to start not taking your pills, you’re going to be missing everything…” And I didn’t want to ruin it! I just got a kidney, I didn’t want to mess it up. Because I didn’t want to go back to dialysis – I don’t want to go back to dialysis.
It’s almost like family
Isaiah: The doctors helped me stay healthy and all of that, but I feel like I connected more with the nurses. They were the ones that helped me, because I feel like when I was on dialysis they helped me a lot to understand everything. They were the ones who prepared me for my transplant the most. They helped me understand a lot of stuff.
Mom: He has one nurse that’s been here since he was a baby and has seen him up to this point. So even just to have that type of continuity and connection! I think Isaiah’s first week out the hospital, he was feeling so good he tried to sneak out and go bowling, and when we came to the clinic and I was talking to this nurse who has seen him all the way. She could take him aside and sit him down and say, “Let’s have a heart to heart.” It’s almost like family!
Isaiah: She said that I just got my transplant, I can’t be endangering myself and my kidneys.
Isaiah: I have to take care of my kidney and my bladder, that’s about it – take my medication, and if I do any type of physical activity, I have to wear a protector. And to keep my bladder I have to cath every four hours…When I was on dialysis I had to change my diet, but after I got my transplant, it’s free – I can eat more of what I want.
Mom: But he is eating healthier then he used to. Before he used to just eat junky stuff, but since he’s had his transplant, he likes healthier food.
Isaiah: My appetite changed.
Do what you have to do
Isaiah: I would say just take your medicine. Do what you have to do so your body can be 100% that it could be right now. And maybe later on you can finally get a transplant or get on dialysis or whatever, so that you don’t even ever experience getting sick, because when you get sick, you’re not going to enjoy it! It’s not fun.
This is going to help me enjoy my life
Mom: It’s almost like at each step, or each stage, there’s different things that you have to do. And you just have to do what you need to do so that you can keep yourself healthy. Because I used to tell Isaiah, in this world right now, everybody has something. And a lot of people take pills equal to what a person who has a transplant takes, and they don’t even have a transplant! There’s always going to be something that we have to do to keep our bodies healthy, and if we look at it that way – when you’re young it’s hard, but if you think if it in terms of, this is going to help me enjoy my friendships, or my family, or whoever – and eventually you’ll get better. It’s a phase you got to go through to get through something.