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

[MAGNOLIA]

If I need to do it, I will ask for the peritoneal, which you do yourself overnight.I see my rheumatologist on Tuesday.This is really major stuffand needs to be discussed.:mad1:
Not too thrilled. Any suggestions? I am kind of desperate, Sorry to vent my anxiety on here.Most people dont understand,as you all know. Wegs is invisible, so since
there is no bleeding or pain, its all in your head.....Thanks for hearing me out !!!!I will let you know............

[vdub]

I sure hope you don't have to do dialysis. I know several people on dialysis and it is a major hassle. However, I have heard of people who do the peritoneal type dialysis and that sure would seem to be the way to go. I don't know anyone personally, though. If I had to do dialysis, I think I would rant, too!

[annekat]

Magnolia, we always give each other permission to rant and vent on here, so don't worry about that. Although I don't have kidney involvement, I could someday, and that in itself is a reason to pay attention to your post and what you are going through. We are here for each other because it is hard to find many people who understand, or who are truly here for us, as you know. There are people here with kidney involvement who will surely reply.

[MAGNOLIA]

Went to Nephrologist who showed me my markers: creatinine, etc., have been getting worse. He gave me a choice, wait one more week or get bloodwok tomorrow and start dialysis on Thursday.Lovely,
isnt it? I wil do it because I dont wamt to get worse.I see my Rheumy tomorrow.Maybe she will put me on Rituxan again.....Anyway, at least the weather is nice.Thanks, my friends...Any suggestions?
Magnolis

[kgnboy]

Magnolia,

I'm new to this and started with dialysis to clean up my toxins due to kidney failure (then they discovered the GPA). The dialysis method may depend on whether they think it is short term recoverable or longer term. If longer term then word from doctors I've talked to is many of them would go for home dialysis due to work/like considerations. Since I was an emergency situation they did a central line (permanent catheter) for 2 months and worked with me to get the BUN/creatinine levels down and fluids off. It was good for only 2 months though and was taken out.

Kgnboy

[gilders]

As kgnboy said, you may only need dialysis for a "short" period then haemodialysis will be your only option. This did the trick for me, but everytime that I've had a relapse my kidneys have been damaged further. They are now at a stage where I will need to be on permanent dialysis in the future. I am unsure which dialysis I will chose, but I'm also leaning towards peritoneal.

[gilders]

One other consideration with peritoneal dialysis is that it's not recommended beyond 5 years.

[Debbie C]

Magnolia, I am fortunate not to have kidney involvement but I just wanted to say that I feel bad for what you are going through because every time I get my bloodwork done ,thats the first thing I look for is if this went to my kidneys yet. I hope all goes well with your ruemy appt. and hopefully the blood work will improve :hug2:

[MAGNOLIA]

Thanks Debra, I appreciate your concern.Hopefully you will not have kidney involvement. Today I went to dialysis. Not a lot of fun. tomorrow, I have plans to go out with friends.
Keeping busy does help.
Wish you the best,
Magnolia

[Debbie C]

I'm sorry you had to have dialysis but hopefully your kidneys will start improving. Did they say how long you will have to have it ?

[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.

[MAGNOLIA]

Hi Patty: I'm still off dialysis. When I first had it, back in January 2015, nephrologist said there was a possibility of getting off it. I have been off it since April.They did bloodwork this week.I am praying
that I can keep off it.They gave me sodium bicarbonate pills, but were causing side effects. Doctor said to stop them until he checked the bloodwork.Ipray a lot, and will be praying for you, as well.
I know too well what you are going through.We must be strong, and never give up.
God bless you,
Magnolia

[gilders]

Great news about still being off dialysis. I've been off it for about 20 years now so there is every chance you might never need it again. The main risk will be how many times and how severe any future relapses of Wegener's you have. My kidneys deteriorate during every relapse. I have had 4 severe relapses and have just started RTX, after 21 months of high dose Pred and Azathioprine. My latest blood results showed further deterioration in kidney function. I'm just hoping it's another "blip" as my results have been up and down during this latest relapse, although they are generally heading in the wrong direction.