I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Mars on July 13, 2009, 09:18:14 PM

Title: Nephrogenic Systemic Fibrosis
Post by: Mars on July 13, 2009, 09:18:14 PM

Greetings,
My husband (age 53) had an anonymous donor kidney transplant two years ago. The transplant has gone well so far, but he has continued to go downhill as a result of MRI dyes used to make sure his renal cell carcinoma had not returned.  (This was incidental and had nothing to di with his kidney failure.)  He has a disorder called Neohrogenic Systemic Fibrosis (see http://www.pathmax.com/dermweb/ for more info), because the dye does not leave the body in kidney patients.  There is a class action lawsuit over this, but that won't bring back his health.  Basically he has fibrosis, especially in his legs, so cannot fully flex them.  He walks like Frankenstein and is getting progressively paranoid about falling, so avoids doing a lot of normal things.  He has gained about 30 pounds since his transplant and refuses to exercise because it hurts.  I can understand this, but know if he doesn't start doing something to help maintain his flexibility that he will soon be in a wheelchair.  He just tells me I don't get NSF and has resigned himself to going downhill.  I don't know what to do at this point.  Is anyone else familiar with this disorder or have any suggestions?  Doctors don't know much about how this progresses  as it is a new disorder.  Transplants are supposed to help, but doesn't seem to in his case.

Thanks for your help.

Title: Re: Nephrogenic Systemic Fibrosis
Post by: paris on July 14, 2009, 03:12:24 PM

Thanks for sharing your husbands story.  I just saw something on tv about a class action law suit for this. I knew the dye could hurt the kidneys but hadn't heard of NSF.    I am sorry he is so discouraged, but certainly understand.  Life was suppose to get better for him.  Please keep posting. Caregivers are important parts of our lives and we value them.   :cuddle;