One kidney works better than the other but it really doesn’t matter right now because one functions fine. They just have to watch it. I have a lot of calcium and phosphate and sometimes proteins – there are a lot of different things in my urine that aren’t supposed to be there. The nephrologist is just keeping an eye on it and making sure that the amounts don’t increase. I know the phosphate wouldn’t be a big deal, but because of the calcium it can combine, and I don’t know, it can cause kidney damage or something. So they have to be aggressive with it.
Jenna, age 16
I’ll have to do it for my entire life
It’s kind of rough in a sense that it’s something I have to do my entire life, and it’s weird to think that I’ll have to do it for my entire life.* Because I think there are very few things that somebody has to do forever. Like, I’ve been put on medication before for stress and I don’t have to stay on that medication forever, and I was put on birth control when I was a young kid for cramps, but I don’t have to stay on that forever. Whereas this is something I have to do until I die, which is just a strange thing to think about!
Elizabeth, age 16
* Editor’s note: Elizabeth’s condition requires life-long catheterization. Other conditions require catheterization on a temporary basis.
The intimacy problem
I guess my biggest concern, and it might just be because I’m a 16 year old girl, is the intimacy problem, in the sense that when I’m married – or even when I have a boyfriend, married is too far away! When I have a boyfriend in college or whatever, and I’m staying the night at his house, I still have to cath. Or even intimacy among a small group, like in college, when I’m rooming with a group of girls and I have to do this…I’ve been to college dorms, I know the bathrooms aren’t exactly ideal! So I guess it’s just sometimes I find being close to people hard. It kind of makes me anxious about forming close relationships, not necessarily romantic, but friendship-wise too.
Elizabeth, age 16
Transitioning to college
It definitely is going to be a tough transition, but I’m a good student and I do a lot of extracurriculars, and looking at me you wouldn’t know that I have a medical condition for the most part. It’s going to be more of a test of how well I actually do take care of myself, because as much as I say I’m independent, my parents do still say, “Did you take your medicine?” and I’ll be like, “Oh yeah!” And then I’ll go and take it.
So I think it’ll be a rough transition but I think I’ll get into the swing of things, and I think it will be okay.
Elizabeth, age 16
I might be able to keep this kidney
If I don’t cath, then my kidney will get in worse health, and so it will eventually die. Now here’s some good news – since the Mitrofanoff, they said it’s been getting a little bit better, steadily been increasing! And honestly, at the beginning with the Mitrofanoff, I was not cathing as much as I said I was. But since I’ve gotten better about that, I guarantee that when they look at my kidney, it’s going to get better and better! And statistically I think I might actually be able to keep this kidney until I die.
Matthew, age 19
I did get nervous for a while because my insurance has a $1500 a year cap on durable medical equipment – but my catheters aren’t considered durable medical equipment, they’re considered something else that doesn’t have a cap. I do have a $70 co-pay for every shipment that I get, so it’s not nothing. It still costs something, but the insurance pays for the majority.
Johanna, age 22
I told everyone!
When I was younger I didn’t like to go to the bathroom, so now I make sure I go to the bathroom when I get that sensation to go to the bathroom. Instead of holding myself, I go.
My doctor told me to cath for two months, and then we were supposed to go back and check. So I noticed it the week before we were supposed to go back to see him – I was starting to get residuals of, like, 0 or 1 ml, which is nothing!
And then when we went back and we had the test done, I had nothing in my bladder. We had another uroflow done and I had nothing left. So they told me I don’t have to cath, I just have to do it like once in a blue moon to check and make sure everything’s okay.
I was so excited! I was just really excited! I told everyone, everyone – even the people who didn’t even know I catheterized, I told them! I was like, “Yeah, I used to and now I don’t!”
Alexa, age 16
Mom: We found out she wasn’t drinking enough either.
Val: Yes, I changed my drinking habits. I just started drinking more because that was obviously the problem. I am supposed to drink like eight glasses of water a day. Right now I probably have about four. Or if I am out in the sun a lot I obviously drink more than that because I would get dehydrated. But other than that I stick to four.
Val, age 19, and mother
We’re still not perfect
Mom: She has made great strides in a year, but we’re still not perfect.
Val: Yes, it’s just emptying really. Now that’s the problem. They want me to sit on the toilet longer than I would. Because after you empty you usually get up, but they want me to kind of sit there. Usually if I get up and move around, like ten minutes later, I’ll go back to the bathroom. And if there’s more left, I’ll just keep doing that – I’ll do something and then go back. I can’t just sit there, I would be there for half an hour if I just sit there.
Val, age 19, and mother
I think I can handle it
As long as I need to, I am going to cath. It’s going to be hard, but I think I can handle it.
There is kind of something that I’m looking forward to – stem-cell research. I’m hoping they get a lot done with that so maybe it will help to regenerate my dead stem cells and stuff.
Henry, age 12
N: Technology has a ways to go
If nothing changes, I’ll be happy, except for the bladder stones. I’ve said this to my doctor, and I’ll say this to the whole urology community if they’re listening! I would hope that this becomes fixed, they find ways around it, they find ways of making treatment as non-invasive as possible. They’re getting better. The last surgery I had, they went in through the catheter, through my Mitrofanoff, through the stoma, and used lithotripsy, took the bladder stone out piece by piece. I woke up, I went home, and I went to work the next day.
I think technology has gotten a little bit better, but it still has a ways to go. I won’t be happy until I don’t have stones, or I go in and they just zap it, you know, half hour procedure! So we’ll see. I have hope.
Sam, age 32