Anyone have 5th stage kidney failure improve?

[mrtmeo]

Just wondering if anyone has gone down to 5th stage kidney failure and how far your kidney's improved after treatments and how long.

There is a young kid, Nick, who has MPA that had a creatinine of 9 and after treatment with ctx for a few months and imuran for 2 years, his creatinine is at 1.2.

https://www.youtube.com/watch?v=zkxkq5QjOhc&list=PL451A815B784B2048&index=12

[gilders]

When I was 17 WG gave me complete renal failure and I was put on dialysis. I did not know the facts and figures of my renal lab results (I was too busy fighting for my life), but would have been at stage 5.
Again, I don't know actually figures, but my kidneys did improve a lot and I didn't require dialysis. I do know that percentage wise I never regained more than 50% function, but I've managed to stay dialysis free for 19 years.
Having said that I am extremely close to returning to dailysis/transplant and will find out next week if I need to start preparing for it.
It is only a matter of time before my kidney function will deteriorate, even if I never have another WG relapse.

Not sure what your creatinine levels quoted are in comparison to the system used in the UK. Mine is currently 350. They have been hovering around 230 for the last few years, so this is quite a quick drop.

[mrtmeo]

When I was 17 WG gave me complete renal failure and I was put on dialysis. I did not know the facts and figures of my renal lab results (I was too busy fighting for my life), but would have been at stage 5.
Again, I don't know actually figures, but my kidneys did improve a lot and I didn't require dialysis. I do know that percentage wise I never regained more than 50% function, but I've managed to stay dialysis free for 19 years.
Having said that I am extremely close to returning to dailysis/transplant and will find out next week if I need to start preparing for it.
It is only a matter of time before my kidney function will deteriorate, even if I never have another WG relapse.

Not sure what your creatinine levels quoted are in comparison to the system used in the UK. Mine is currently 350. They have been hovering around 230 for the last few years, so this is quite a quick drop.

Hi Gilders,
I sure hope your kidney function gets better.

My mom's creatinine is at 2.2 mg/dL (194 umol/L).
At her worst, it was 3.3 mg/dL(291 umol/L) and at its best a few weeks ago, was 1.8 mg/dL(159umol/L).
Not sure if yours is umol/L.
If the creatinine converter below is correct, 350 umol/L would be 3.9 mg/dL in the US.
230 mmol/L would be 2.6 mg/dL.

Bill's Biochemistry Javascript (http://members.iinet.net.au/~bill/java/creatinine.html)

[mrtmeo]

Gilders,
I have been trying BCAA's 12gms per day on my mom because a clinical study showed improvement in albumin and nutritional status amongst dialysis patients that suffered anorexia. I am hoping to help her nutritional status while inbetween Epogen helps keep her hemoglobin and albumin closer to normal without having to load protein. Too much protein taxes the kidneys.

Here is the study
Oral supplementation of branched?chain amino acid improves nutritional status in elderly patients on chronic haemodialysis (http://ndt.oxfordjournals.org/content/16/9/1856.long)

Also, I have her on a ketogenic diet to keep her sugar down and hoping to lower her protein to help the proteinuria.
Here is a study with diabetic mice on a ketogenic diet of 5% carbs, 8% protein and 87% fat. I have not been able to get her into ketosis while she is on prednisone and she cheats once in a while.

Reversal of Diabetic Nephropathy by a Ketogenic Diet (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3080383/)

I will post an update if these things work.

[gilders]

Thanks mrtmeo.
I'll have a closer look at BCAA.

As for diet, I must be doing something right as my nephrologist is surprised that I've managed to avoid the need for transplant or return to dialysis for so long. The only time that my kidneys have lost further function is due to relapses of Wegener's.
My diet is quite simple. I eat low fat to generally keep heart healthy and not put on too much weight. I also eat very little processes food or "ready meals", I cook using raw ingredients. I also allow myself the occasional treat. I worry about some of the more extreme diets as I have a few different illnesses. This could mean a diet specially for kidneys may have a bad effect on my other complications, therefore a general healthy diet is the way I go.

I've just got back from my local surgery having had the blood tests which will determine what action needs to be done with kidneys.

[mrtmeo]

Thanks mrtmeo.
I'll have a closer look at BCAA.

As for diet, I must be doing something right as my nephrologist is surprised that I've managed to avoid the need for transplant or return to dialysis for so long. The only time that my kidneys have lost further function is due to relapses of Wegener's.
My diet is quite simple. I eat low fat to generally keep heart healthy and not put on too much weight. I also eat very little processes food or "ready meals", I cook using raw ingredients. I also allow myself the occasional treat. I worry about some of the more extreme diets as I have a few different illnesses. This could mean a diet specially for kidneys may have a bad effect on my other complications, therefore a general healthy diet is the way I go.

I've just got back from my local surgery having had the blood tests which will determine what action needs to be done with kidneys.

I hope they can get your weg's under control quickly.
Have you ever done Rtx?

[mrtmeo]

Thanks mrtmeo.
I'll have a closer look at BCAA.

As for diet, I must be doing something right as my nephrologist is surprised that I've managed to avoid the need for transplant or return to dialysis for so long. The only time that my kidneys have lost further function is due to relapses of Wegener's.
My diet is quite simple. I eat low fat to generally keep heart healthy and not put on too much weight. I also eat very little processes food or "ready meals", I cook using raw ingredients. I also allow myself the occasional treat. I worry about some of the more extreme diets as I have a few different illnesses. This could mean a diet specially for kidneys may have a bad effect on my other complications, therefore a general healthy diet is the way I go.

I've just got back from my local surgery having had the blood tests which will determine what action needs to be done with kidneys.

Hi Gilders,
I was trying the BCAA's with my mom at 6mgs per day and her hemoglobin and hemocrit as well as appetite improved, however, her proteinuria increased.
I believe this proteinuria increase is due to hyperfiltration which the kidneys expand to adapt to extra protein and not damage.
Looking at the studies, keto analogs of BCAA's is what works to improve proteinuria, slow the rate of decline on GFR and improve hemoglobin, albumin and nutritional status.
The only keto amino acid supplement available by prescription is Ketosteril.
http://www.allrealmeds.com/ketosteril-brand-600mg-p-1265.html


http://tndt.org/pdf/pdf_TNDT_630.pdf

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