Hi everyone, I decided to join after reading alot of helpful posts.
I'm a 20 year old with primary FSGS, this condition as messed alot of things up in my life, cant play sport due to my neck line, lost a lot of close friends because they don't know how to deal with me. Lost a lot of weight along with other things.
Im possibly getting a transplant from my dad soon, all the tests are complete and just waiting on a day now. but after doing a lot of research I'm really worried that im going to get it again very quickly. Then i will be back on dialysis before i know it.
Does any one have any positive affect with FSGS and transplants?
Does anyone else feel trapped because of dialysis? (ie i feel as though i have to always be near to my dialysis center and cant go away anywhere and relax.)
Currently im limited to 500ml of fluid per day, and finding it tough as i work 9-6 mon-fri and doing 3 peoples jobs. Does any have any good ideas? i have been told to suck on ice cubes but thats doesnt really help.
Currently I dialysis in the evenings for 3.30 hours, i have a neck line so i can use both my hands, so i have a laptop ipod and a few books to read as well and a TV but i still get bored and annoyed if sitting there, does anyone else do certain things while hooked to the machine?