Long road

[Jack]

Hi lafounk2,

I can only tell you my own experience which, as with all things Wegener's related, may not be typical and there are not too many of us transplant Wegies around on the site.

By the time I was diagnosed, I had suffered a lot of kidney damage - past the point of no return! There was some unwillingness to put me on a transplant list while the disease was so active as the new kidney may have then gone the same way. However, Wegener's patients were considered to be acceptable for transplant because the treatment uses mostly the same drugs as used for anti-rejection of a new organ.

After around a year my kidneys failed and I went onto dialysis and at the same time was put on the transplant list. My Wegener's was pretty much under control by that time, but I would not have called it remission. I received a cadaver transplant 18 months later, by which time the Wegener's was quiet, but the dialysis was starting to take its toll. The average life of a transplant was only 8 years at that time, but mine was a good match, treatment has improved and it has now been 19 years with no problems (not from the kidney at least!).

I stayed in hospital for 10 days, after which I never felt better!
(Thank you doner and family whoever you are! )