SpreadySpaghetti

I am in a very similar situation! I'm 26 and have been on dialysis for the past 3 years. It was caused by Vasculitis, an autoimmune disease. It is actually the second time I have been on dialysis. I was original diagnosed when I was 15. I did dialysis and had a kidney transplant, but then lost it at 23 and had to restart dialysis. It was pretty devastating. I too have felt with the prednisone, weight gain, moon face, constant hospital visits, stretch marks, insane medical bills (I am 100k+ in debt). My life has been completely interrupted. But I just wanted to say that it does get better. Once you finally start dialysis a lot of the water weight will come off and will physically feel so much better. The hardest part for me after the physical changes was the debt. I would stay up nights crying because of how trapped I felt by all the medical bills. After a certain point I just had to tell myself it is what it is. I need to be thankful that I'm even alive. The bills need to come second to my health. I can worry about the debt after I finally get another transplant(I've been on the waiting list for 3 years). I know it's not really what you wanted to hear, but it's the truth. Sorry I don't have any answers for the stretch marks. I've tried several creams but I still haven't found a miracle potion. With help of the social worker at my dialysis unit I was able to have the American Kidney Fund pay for my insurance premiums. I'm not sure what the qualifications are to apply for their assistance, but they might be able to help you out. It's worth looking into.

If you don mind me asking, how much prednisone are you on? Is the doctor considering tapering you off at any point?

Also if you would like to take in more detail please feel free to private message me!

Thanks for doing this AMA. I've had to deal with my own health issues. I've been on dialysis now for 4 years. I know it's not the same, but I know what you mean by taking it one day at a time. Your comment gave me the inspiration for today to get up and keep going. I appreciate it.