Some early signs

self-cathing key


 

blue_sc_func I was sick! I didn’t really know what was going on with me. I was wicked skinny. I wasn’t able to go to dance, so I missed out on a lot of dance. My mom used to bring home my work from school. (I wasn’t in school because they thought I had mono, so they thought I was contagious, which I wasn’t!) I felt wicked sick. I was out about three months.

 

Alexa, age 16

 

yellow_sc_ana I couldn’t even make it into the house
I just started having accidents because I couldn’t hold it, I couldn’t wait to go to the bathroom! In the summer it happened a few times, and then the first day of school it happened. Sometimes when I was trying to get my dog on the runner, I didn’t realize I had to use the bathroom, but once I took her on the runner I HAD to go to the bathroom and I couldn’t even make it in the house.

I’m not really sure whether anyone noticed. The time at school, it was only once, I was getting stuff from my locker. The teachers told us we were supposed to have permission before going to the bathroom, so I tried going to ask my teacher, and I sat down…it was too late.

Gabriella, age 10

 

 

yellow_sc_ana The total opposite
I’ve always had problems with my bladder since I can remember, but they were incontinence issues. Starting in December, I had difficulty voiding and urinary retention, so it was the total opposite of what I was used to. It was the total opposite, so it was really strange at first. We were all hoping that I would wet the bed or I would just do something but I never did…and then I was admitted because they wanted to make sure my kidneys were okay.

Jenna, age 16

 

 

blue_sc_func It just got worse
I noticed after the surgery that I wasn’t going to the bathroom right. And my doctor said that it just happens and it will go away. So I just ignored it, thought it would go away, but then it never went away.
I would push to go to the bathroom. You know how you just go to the bathroom? I’d have to PUSH to empty everything out. And I used to be able to hold, like, nine cans of soda in my bladder without having to go to the bathroom, so I didn’t get that sensation to go to the bathroom either…and it just got worse! This year for some reason, I don’t know why, it got really bad to the point that I felt like I couldn’t empty out my bladder very much at all. I was going very little and I knew I had a lot in my bladder, so that was a problem. I was like, “Mom, I need to go see the doctor!”

Alexa, age 16

 

 

blue_sc_func I stopped being able to empty
Val: When I was a child I would always hold my bladder, and I think that’s why I stopped being able to empty. I remember, middle school and high school, I would never go to the bathroom at school. I would hold it until I got home. I just didn’t feel the need. I just didn’t want to go, I think, or miss classes because of it. Then I wasn’t going as often, and I wasn’t drinking enough.

Mom: Then you got urinary tract infections.

Val: They were very painful, they would come with fevers…

Mom: She would have one, get over it, then she would get another one maybe two weeks later.

Val, age 19, and mother

 

 

green_sc_neuro Just feeling sick all the time
At the start of it, I was just feeling sick all the time, and I actually went to the doctors a lot trying to figure out what it was. They had a few different things they thought it was, and they kept putting me on different medicines and other things to try and figure out exactly what was wrong with me. Eventually I got real sick one day, I got real dehydrated and stuff, when I was playing baseball actually. And then my mom took me to the emergency room and they took my blood and everything and found out my kidneys were going bad, and they sent me to Children’s…I threw up at first base. I remember it. I was finally starting first base and then, yeah, right before the game started…

Dylan, age 17