Even to this day I still miss some cathing. Every once in a while I’ll miss it. But once again, if I can just get a 100% airtight schedule of just cathing at a specific hour every day, everything will get better. The doctors might even give me an award! Here you go, for perfect cathing!
Matthew, age 19
My health is more important than my socializing
When I’m being really good then I cath five times, four times a day. Sometimes I will go zero times a day, which is very, very bad, but that’s more a reflection of my being busy socially. And that sounds terrible, because like I said, my health is much more important than my socializing! But when I’m away at school all day, and it’s a Friday, and then I go to a friend’s house, and then I stay the night at her house, and then the next day I go out to breakfast – sometimes it’s hard for me to find that extra few minutes.
But when I go away with my friends, I know I need to be on top of things or else I’ll get sick. So it really depends. When I feel completely comfortable sometimes I just go a day without doing it. Honestly, I’m more likely to not cath when I’m at home because I’m just like, “Oh yeah, whatever. It’s fine, I’m at home.” But if I’m at a friend’s house, I’m like, “I know I have to, or I’ll feel sick.”
Elizabeth, age 16
Wait a minute!
Naomi: If I’m doing something I have to stop and go cath. Or I’m like, “Wait a minute!” and I just finish it really fast. If I forget, my mom or my babysitter will say, “Did you go to the bathroom?” I’m like, “Uhhh…no.”
Mom: We are like a pain in the butt! I always remember. I can be on a nine-hour shift, but wherever I am I will call her. And then I will go to the nurse at school every once in a while and make sure that everything is working there.
Naomi, age 10, and mother
I forget
Gabriella: My mind sort of wanders a lot, so I forget. Or I know I should do it, but I just don’t.
Mom: She needed reminders, she would forget. If I was elsewhere doing something and then I’d ask her, “Did you do your catheter at lunch time?” she’d go, “Oh, I forgot!” So there were times that she missed.
Gabriella, age 12, and mother
It’s not too hard to fit in. At school my aide comes to get me and we go to the nurse, and at home mom reminds me. Sometimes I ask to, like, finish a page in a book that I’m reading. The worst part is interrupting activities.
Siobhan, age 9
Everyone thinks, “I don’t have to go”
At first, right out of the surgery, I think the doctors make you cath a lot. That’s probably part to get used to it, and part to keep the bladder not stretched out, because you just had major surgery on it. Then over time it stretches out to every four hours…then you realize one day that you went seven hours by accident! I mean, I don’t recommend it, but sometimes you forget to drink fluids and there’s not a lot of urine in there. The problem is that everyone thinks, “I don’t have to go,” and I’ve thought that before. I guess that’s an immature way of thinking about it, but you just don’t have a feeling to go. I know some people don’t ever have feelings to go, and they just go strictly by a clock. I do have some sensation, I know when my bladder is full, and if after five hours, I don’t have that indication…I’m in a conversation with something, I’m watching a movie…I forget. You get to seven hours, what happens is the urine has been sitting in there, and that’s probably a little bit of the dehydration that helps foster infections and stuff.
Sam, age 32
You can’t take a day off
The whole being responsible thing, you can’t take a day off.
The other day I was going with a friend to watch a football game somewhere and I’m like, “Would you mind turning around?” I forgot a catheter. I was in his car, and that’s the scariest thing in the world. You’re trying to find it, and you’re like “Oh my God. I have no way of going to the bathroom right now.” So he ended up going back, and he was like, “Why are we going back?” I’m like, “I forgot medicine, I’ve got to get medicine.” I mean, I tell a lot of people what’s going on, but there’s always the random person that you’re not just going to strike up a conversation with and say, “I catheterize.” So I told him I had to go back and get medicine.
So does it change your life? I guess if you let it. You have to be more responsible.
Sam, age 32