Kidney preservation diet. . .

[smileeface]

Hello all,

I haven't posted since my initial freak out, recognition and acceptance of kidney failure - but I read here frequently.

Does any of this sound normal to you veterans?

Late November my neph said - you will be on dialysis in six months.  This woman has NEVER given me timing on anything for the last seven years - this freaked me out.

I met with a nutritionist who gave me ideas on what to eat and not eat - everything AGAINST every weight loss diet I have ever been on - and I've been on a lot!

I get labs done every month.  GFR was as low as 16 in November and creatin as high as 3.3.

Everything has been steadily climbing - GFR at 21 and creatin at 2.7.

I know my kidneys cannot get better - but has anyone experienced this and any idea how long this could go on for?  My guess is 30 days to many months.

They still have not even scheduled the access appointment for the PD catheter. . . .not even a plan for dialysis yet.

I'm still trying to get on any transplant list that I can - I'm trying really hard to get on the paired donor program at University of Toledo - they have that nationwide network.  I have living donors - they just don't match me.

Thanks for reading!

[sullidog]

When I started on dialysis they gave me 3 months for my kidney function to improve. It never did but it does happen.
Troy

[RichardMEL]

G'day Smileeface.

Be aware that lab values can fluctuate like this based on when they were done, if you exercised, what you ate and that kind of thing. I remember when I was pre-dialysis the creat would go up, then down, then up etc.. the neph was always saying "don't panic if it goes up one time, it's a trend we're working on" - and in a way that's why sometimes they can't give you timing - everyone's different so there's no model for predicting when - plus some people decline slowly for a long time, then as things get worse there's a more rapid decline. In the end it's all guesswork, and remember the numbers are only half the story - it's also about how YOU feel and how the various symptoms are affecting your life. Some can feel fine and function normally till a GFR of 5 or 6 (like me) and others can be throwing up and unable to move much at GFR 15. All these things need to be taken into account.

Yes, kidney function can improve of course - we have some rare examples of this on this very board - but it's hardly the norm. Of course we hope yours is improving for the long term and keeping you off dialysis.

[Stoday]

A year ago I was told I'd be on dialysis in six months.

I think I'll start in two months time.

[okarol]

I get labs done every month.  GFR was as low as 16 in November and creatin as high as 3.3.

Everything has been steadily climbing - GFR at 21 and creatin at 2.7.

Well if your numbers stay above 20 for GFR they cannot list you. And I know someone who was at 2.5 creatinine for 10 years. Doctor's are guessing because kidneys can fluctuate, then one day they might crash... or it can be a slow decline with fits and starts. Beginning dialysis has more to do with symptoms, in my opinion. Shortness of breath, fatigue, fluid retention causing swelling, reduction of urine output, and overall crappy feeling - that's when you're ready.

[bountyhunter_ga]

I also make uren after over a year on dialysis, sometimes more than other times go figure. My advise to you would be to get a fiscula and not the
PD catheter. Most people have problems with the catheter and end up back in the hospital several times. The Fistula has only been reworked two times in a year and a half. as far as dialysis you will know when its time, your legs will swell up all your energy is gone and in general you feel like crap. You will need to get the fiscula a couple months in advance of doing Dialysis, and hope you don't have to. Good luck my friend we all ask these questions and I find that most of the people on the site are much more equipped to answer all questions than me, but I just like to talk,, have a great day no matter what

[MooseMom]

Everyone has a story, and it is all "normal".  I was first diagnosed in 1992.  In 2004, we discovered how bad my kidneys really were, and for about 5 years, my eGFR and creatinine held steady at around the same range as yours.  My neph, when he first examined me back in 04, sent me directly to a transplant center, but my eGFR never went below that magic number of 20.  Thousands and thousands of dollars and hundreds and hundreds of pills later, all my numbers started tanking earlier this year...and quickly.  I now have my fistula (get the bandages off today) and am preparing for dialysis (don't know exactly when yet).  I have completed all my pretransplant tests and hope to get on the list asap.  I could hold out for months, or I might be on D in a matter of weeks...no one knows for sure.

The prerenal diet is counterintuitive; it outlaws many, many foods that we have learned are "healthy".  But the prerenal diet has nothing to do with weight loss, rather, it has everything to do to minimize the consumption of minerals that our kidneys can no longer filter (potassium and phosphorus).  Buildup of those substances cause great harm.  Forget everything you've ever heard about "healthy eating" and relearn good renal habits; that's been the hardest part for me.

[Romona]

There are many nice websites that have renal diets and recipes. It is hard, some of the safe foods to eat are definetly not the most healthy for general population. There are some hidden things like phosporous and preservatives that aren't clearly listed on food lables.
My creatinine was 3.5 after being much higher, but that was when they were getting me ready for dialysis. I was blessed with a transplant before I had to go any further.

[tito]

I had a creatinine level of about 3 for ten years following a heart bypass operation. My PCP doesn't like to refer patients to specialists, but he is an extremely well-known physician attached to Brigham and Women's Hospital in Boston. He treated my blood pressure and lipids aggressively, and I thought he was quite competent in treating my kidney issues. All he ever said after exams was that my kidney function was stable.

Unfortunately he poo-pooed symptoms of kidney failure for about a year before the gfr started going over the cliff. My nosebleeds were due to dry air, he said. He barely treated my anemia by giving me one transfusion and throwing some iron pills at it (the renal lab said later I could take pills until "the cows come home", and it wouldn't do any good - I needed iron infusions). My hemoglobin was 8. He took me off Nexium which precipitated bleeding from my ulcers. I almost bled out a year ago. Ankle swelling, he told me, was due to my blood pressure medication, a calcium-channel blocker.

I wasted much time getting on transplant lists, which I could have been working on prior to my gfr plunge. It was only then that he recommended a nephrologist, whom he said he would find for me. He promptly went on vacation and forgot about it. I ended up finding my own nephrologist - and am very happy, actually.

So, my point is that you can go along for years with kidney failure, but make certain you know what the symptoms are, so that when they start you are prepared. Make sure you have a good nephrologist standing by. I'll only go to this doctor now for a flu shot.