Dialysis choices

[gilders]

Just been catching up with my emails and noticed one from yesterday - from my nephrologist's secretary. It stated that my latest bloods showed further deterioration from 18% function to 14%
15 % or less is Stage 5 Cronic Kidney Disease / End Stage Renal Failure and requires dialysis.

I was SO hopeful that my kidneys would stay above 15% for another 10 months (I could pursue a transplant then if I stay in remission). I need the bloods repeated, which I think will be tomorrow. If no improvement then dialysis will be very soon. I've actually felt worse the last 5 days so I'm expecting the worse.

[Pete]

Sad to hear the news, Pete. Hope all goes well going forward.

[drz]

Just been catching up with my emails and noticed one from yesterday - from my nephrologist's secretary. It stated that my latest bloods showed further deterioration from 18% function to 14%
15 % or less is Stage 5 Cronic Kidney Disease / End Stage Renal Failure and requires dialysis.

I was SO hopeful that my kidneys would stay above 15% for another 10 months (I could pursue a transplant then if I stay in remission). I need the bloods repeated, which I think will be tomorrow. If no improvement then dialysis will be very soon. I've actually felt worse the last 5 days so I'm expecting the worse.

Sorry to hear that.

[vdub]

Not good, Pete.... Where will you have to go for dialysis? Near by?

[Alysia]

Just been catching up with my emails and noticed one from yesterday - from my nephrologist's secretary. It stated that my latest bloods showed further deterioration from 18% function to 14%
15 % or less is Stage 5 Cronic Kidney Disease / End Stage Renal Failure and requires dialysis.

I was SO hopeful that my kidneys would stay above 15% for another 10 months (I could pursue a transplant then if I stay in remission). I need the bloods repeated, which I think will be tomorrow. If no improvement then dialysis will be very soon. I've actually felt worse the last 5 days so I'm expecting the worse.

I am sorry, Pete. I keep you in my daily prayers & I ask my beautiful dr. Phil to help you from his good place in the presence of God ♡

Question, which also reflects my wish for you: you said that your wg is active now. Is it possible that once you will beat it to remission, the kidney's functions will get better ?
You have being on dialysis 20 years ago but you have recovered from that need. Is it possible again ? And if this is the issue, then the wg treatment is the most critical thing, isnt it ? What treatment are you on ?

Sorry if I ask too much or stupid questions... trying to think about more possibilities.....

[gilders]

I am sorry, Pete. I keep you in my daily prayers & I ask my beautiful dr. Phil to help you from his good place in the presence of God ♡

Question, which also reflects my wish for you: you said that your wg is active now. Is it possible that once you will beat it to remission, the kidney's functions will get better ?
You have being on dialysis 20 years ago but you have recovered from that need. Is it possible again ? And if this is the issue, then the wg treatment is the most critical thing, isnt it ? What treatment are you on ?

Sorry if I ask too much or stupid questions... trying to think about more possibilities.....

GREAT NEWS!
Blood test showed eGFR back up to 18%.
Obviously I'm still borderline dialysis, but I'm on the right side of the border!
Alysia you never ask stupid or too many questions and I'm always happy to respond!
Thank you for your prayers and thanks to Dr. Phil.
My kidneys are suffering from chronic damage, so there will not be any function increase, beyond slight variations (probably up to 5% difference). I have noticed that after my previous W.G. relapses have gone into remission, kidneys continue to deteriorate. My specialist said that this was because once the active damage to the kidneys has stopped, scarring then begins. As you will see on a cut on your hand, scarring is larger than the original damage (cut), therefore kidney function will continue to deteriorate until scarring stops.
From personal experience and from reports I've read, damage to kidneys from an acute attack of vasculitis can be reversed using dialysis, but not long term, repeated attacks like I have had.
As for treatment, I'm on maintenance Rituximab (every 4 months) and a low dose (5mg) of Prednisolone, plus 11 other drugs.
I've been in remission for 2 months, but need to stay that way for a further 10 months before transplant can be considered.

vdub, my aim is to avoid dialysis and get the transplant done. Success rate is MUCH higher for patient who get a transplant before having to have dialysis.
If that does not happen then I plan to have dialysis at home, but I will most likely need to begin treatment in hospital. Although most of my care is at an hospital 160 miles away, I still see a nephrologist in the next city to me (Bradford), so would be having dialysis in Bradford.

As well as the usual problem with dialysis I have 2 problems that make it much riskier!
Not only am I on warfarin, but I have platelet dysfunction. I was in hospital for 2 weeks last August with severe bleeding (Geoff came to visit me) and as I would prefer daily dialysis, needling myself everyday runs a high risk for severe bleeding.
The other option is Peritoneal dialysis (through permanent catheter in stomach), but this method carries high infection risk, so isn't recommended for immunosuppressed patients.
This is why I'm SO scarred of dialysis and need a transplant.

Pete and drz, thanks for your concerns too.

[Alysia]

Thanks God for the better blood tests. And thank you Pete for your clear explanation and info. Then you are alreay in remission. Thats good. And your treatment sounds perfect. Hang in there. Keeping you in my daily prayers. Please update us.

[NikkiNicole]

My goodness. All of this sounds scary from word one. I am glad to hear that you are back in the 18% range. Perhaps that transplant is not as far off as you were now thinking. I'd give you one of mine!! Of course, I also have WG/GPA but my kidneys haven't suffered yet!
Dialysis sounds frightening to me. It always has, way before it was on my radar this much.
I will continue to send good thoughts and prayers your direction!!!

[LisaD1]

Just a data point - may differ with others - I have no idea how this works. In my case, my kidney function improved over a year and a half time frame from 18 GFR to 26 GFR and knock on wood may continue to improve. Every few months, up to and including my last test last month, there has been a small but significant and seemingly stable improvement in my kidney function. For several months at time it remains with in a range and then suddenly a bigger improvement occurs. It's a mystery but a good one!

[Alysia]

Just a data point - may differ with others - I have no idea how this works. In my case, my kidney function improved over a year and a half time frame from 18 GFR to 26 GFR and knock on wood may continue to improve. Every few months, up to and including my last test last month, there has been a small but significant and seemingly stable improvement in my kidney function. For several months at time it remains with in a range and then suddenly a bigger improvement occurs. It's a mystery but a good one!

That is wonderful. This is what I was hoping for gilders to happen.... What meds are you on ?