Has anyone done dialysis? My kidneys are so bad, nephrologist mentioned possibility

[annekat]

I'm sorry the dialysis was unpleasant, hope it is better next time.... Good for you, going out with friends tomorrow; I hope you'll have fun and it will take your mind off it a bit.

[LisaD1]

I haven't yet even been diagnosed but I see the specialist on Wed. Meanwhile about 6 months ago my kidneys suddenly got seriously worse and the Dr. put me on a treatment of cyclophoshimide (sp?) and prednisone. After 3 weeks, I had a kidney biopsy which suggested I did not have wegs so they took me off the meds (tapering pred)....however over the next 6 months my kidney function improved after even that short treatment of a mere 3 weeks. I dread dialysis and I will do the home method via peritineum (sp?) and also sign up for kidney transplant if it comes to that. I am hoping for a diagnosis because my kidneys are getting worse again and it does seem like taking out the immune system even briefly helped me.

[MAGNOLIA]

I started dialysis back in February. My kidneys recouped and i was dialysis free for one month. However, I got a UTI and /Dr. prescribed antibiotics. Guess what?
My kidneys went bonkers again. The first time I had taken three rounds of antibiotics for a respiratory infection. I have been on dialysis for about 3 weeks, and my kidneys recovered again.But I have another UTI, so I told doctor I am not taking antibiotics. He suggested a milder antibiotic, once a day, every other day for four days.I will see what the nephrologist
says tomorrow. This WG is lots of fun, isnt it????Since I did the Rituxan, my immune system is weak, so I guess thats why this happens. Anyone with any comforting thoughts?
Magnolia

[PattyL]

My Dr. discussed dialysis very scary to me. Waiting to have a kidney biopsy also scary to me. And yes, Wegs is invisible some seem to have turned their back on me and I'm talking about family maybe they are in denial but us who have it have to keep moving forward and face it every single day we can't deny it is a part of who we are at this moment. I hope you do not have to be on dialysis and wish you all the best.

[MAGNOLIA]

I was taken off dialysis after about three weeks....Hurray! I prayed so hard, and God heard me.I read that people with Wegs who need dialysis, recover 3x as often as other patients doing dialysis
for other reasons.This is for Patty and anyone else contemplating dialysis.I just want to give you hope. My doctor thought it was impossible, so they dont always know everything...Right?
It certainly is a struggle, but we are all in this together !!!!!

[annekat]

I was taken off dialysis after about three weeks....Hurray! I prayed so hard, and God heard me.I read that people with Wegs who need dialysis, recover 3x as often as other patients doing dialysis
for other reasons.This is for Patty and anyone else contemplating dialysis.I just want to give you hope. My doctor thought it was impossible, so they dont always know everything...Right?
It certainly is a struggle, but we are all in this together !!!!!

Magnolia, that is awesome news! I wish the same for everyone who needs dialysis.

[gilders]

If your kidneys fail suddenly, such as in a severe Wegener's flare, then getting wegener's in remission (quickly) and having dialysis can give your kidneys chance to recover.Then the need for dialysis may cease (this happened to me) and you may be off dialysis after a few weeks.
Unfortunately if kidney function as deteriorated over a long period (years) such as after many relapses, then dialysis is likely to be permanent. This is my current situation with chronic kidney disease at stage 4. I will eventually need dialysis and transplant.

[PattyL]

I have a severe flare at this time..I have ckd stage 4 as well. this happened over the last 2 yrs. I did not know there was a possibility of coming off dialysis once started. I have a biopsy coming up to be sure that the WG is active in the kidneys. Not looking forward to that. I am on 30mg prend. daily and that is it until the biopsy. What have you found helpful in your treatment?

[MAGNOLIA]

Magnolia
The reason I went on dialysis back in February, was because I had taken three rounds of antibiotics for a respiratory infection. After a few weeks of dialysis, much to my surprise, they took me off
since my markers were back to where they were before. Again I had an infection, and the same thing happened.Then, one month ago, they took me off dialysis again.I was treated with Rituxan
in February and 10 mg. of prednisone.Now I am off meds, but being checked constantly. I had kidney biopsy originally, when diagnosed in 2009. Good luck to you. I am still concerned, since this
is so tricky. But we have to be strong. I will pray for you.

[PattyL]

Hello, I hope you are improving. Are you still on dialysis? Is it long term?
I had a kidney biopsy Friday praying for no dialysis.