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Dorothea
08-01-2016, 05:53 AM
Has anyone had to go on dialysis with Wegeners?

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gilders
08-01-2016, 08:22 AM
Hi Dorethea.
I'm currently in the process of having access created for dialysis (both fistula and catheter in abdomen).
I also had a brief spell on dialysis 20 years ago at onset of Wegeners. I've tried to educate myself as much as possible about all the different dialysis choices, so if you have any questions I'll try my best to give honest answers.

Dorothea
08-05-2016, 12:45 PM
Hi gilders, After having dialysis the first time with Wegeners, did your kidneys come back?

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gilders
08-05-2016, 07:45 PM
Hi Dorethea. My kidneys regained a lot of their function after I first went on dialysis. This was because it was an acute attack of vasculitis. If kidney function has decreased from chronic disease, there's no going back. Even acute attacks with prompt dialysis will leave some permanent damage and loss of function.
Once kidney function drops as low as 20% (except for an acute attack), even if Wegeners/vasculitis remained in remission permanently, kidney function would still deteriorate.

Dorothea
08-05-2016, 10:31 PM
I spent the whole month of July in the hospital, I have acute renal failure, my kidneys were only functioning at 5%! I'm also getting Rituxin Infusions, my fourth one is on the 10th. I've never been so scared in my life, I thought I was going to die! I really hope my kidneys come back. Thank you for your input😊

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vdub
08-06-2016, 03:29 AM
Forum Maintenance -- 5Aug2016, moved thread to the Renal Dialysis forum.... vdub

gilders
08-09-2016, 12:59 AM
Hi Dorothea, I presume you're on dialysis at the moment? If so, I hope all is going well. Is there any indication as to whether you're regaining some kidney function yet?

rebekah
08-26-2016, 12:00 PM
I'm so sorry to hear you aren't feeling well, Dorothea. I hope the Rituxan is helping you feel a little better and get Weg's under control. I had dialysis the end of 2012 before my transplant. I did hemodialysis at the clinic overnight, that way I was able to still go to school and could just sleep at the clinic. It has been a while, but if you have questions I can try to help. I hope your kidney's are starting to improve! :)