Kidney issues since birth?

[gkcoley]

i have never had a huge problem with dialysis and wheelchairs and all growing up so i am used to it.  Now im 24 and depressed all the time because i am unable to support myself financially so i am stuck living at home with my parents while everybody i grew up with is starting lives and families.  I was jsut looking for anybody else that has been on dialysis or kidney issues sicne an early age.  Ive been on dialysis sicne i was 8 and was born with the kidney issues.

[Riki]

I was born with something called Bardet-Biedl syndrome, which affects both the eyes and the kidneys, but we didn't know this until I was about 14.  To be honest, I don't know how accurate this diagnosis is, as I don't have many of the tell tale signs, but that's another thread. *G*

I started dialysis when I was 12, and it was quite sudden. We had no idea there was anything wrong with me until my body actually began to shut down.  I've had 2 transplants, and I've been on dialysis now about 7 and a half years.

I think when you are on dialysis as a kid, you don't realize the magnitude of the situation.  You pretty much go with the flow, because that's what you always did.  Do as your told, kind of thing.  You don't question it, because as a kid, you believe that your parents know what's best.

When I was getting ready to start dialysis after my first transplant failed, I was 23 years old, and I was living on my own.  I felt incredibly alone, like I had been abandoned by everyone.  I wrote a journal, bery detailed, about how I was feeling.  My boyfriend of the time, who was supposed to have moved in with me when I got the apartment and backed out at the last minute, moved in with me a week before I got the kidney.  We lived together for about a year, and in the time, he found the journal and read it.  To this day, he is the only one who knows exactly how I felt at that time.  Now, after we've been apart for 10 years, he still calls to see how I'm doing, since he knows that I'm on dialysis again.

[bleija]

well i had a normal childhood, i was living on my own when i found out about my problems. i am now 21, and i understand how u feel. all my freinds are gettting married and having babies... i got married, i found somebody luckily, and i did get married, but we are stuck here bc of my kidney probs, and i see on facebook ppl i could never imagine having babies, post im pregnant.... gets me down every once in a while but one day

[rsudock]

 

I avoided dialysis as a child and realize now as an adult how different my life probably would have been....my brother wasn't as lucky and now after being on the machine myself, I realize what hell he endured in silence all those years ago.  I feel so terrible not being a better big sister when he was in highschool...I still get so sad thinking about it....

Now that we are in our late 20s we talk about the things we may never have children and/or marriage etc...but we also think about the things we do have and we are happy that we have each other to lean on. Someone who knows exactly what you are dealing with...

I think RIKI is right about kids on dialysis. They trust adults to do right by them...I try to help my students on D by giving them more knowledge and resources to find out how to be more healthier/happy on dialysis...

xo,

R