How long can a person go before dialysis?

[smileeface]

I have been struggling with where to ask this and how to ask - I know everyone is different. . .

Quick history:  9 years ago told that my kidney's were not fully functioning, life continued.  Then in November of 2009, my doctor said - take this dialysis class, you're in stage 4 - you will need dialysis within 6 months.

I freak out - spend 24 hours assuming I will die instantly, do a ton of research, figure I won't die - I might actually live a really long time.  Start a "kidney preservation diet" - well that's what I call it

Here I am today "stable".  GFR was as low as 16 and as high as 21 in these last 5 months.  Everything is marginally changed for better and worse.  My creatin has improved.  I feel really good.  Lost 37 pounds, exercise every day, work 50+ hours, have a very active lifestyle.


My question is - should I expect dialysis any day or has anyone heard of people continuing at these levels for any great length of time?

Thanks in advance . . .
Karin

[RichardMEL]

This has to be one of the most commonly asked questions.

It's also the question that you basically have to ask yourself "how long is a piece of string?" to answer. Basically it could go any number of ways.

I'd say if your neph told you you'd need D in 6 months than they're going off the trending of how your labs have been tracking over the years. This is usually fairly reliable, but sometimes, specially in later stages, kidney function can drop quite quickly, or sometimes stay stable for awhile - everyone IS different.

There's no hard and fast rule at this point. 16% is still fairly decent and you should be able to function well at that level(and sounds like you are). All i can suggest is you make the most of this time - however long you have living more or less normally - be it 3 months, 9 months or 4 years (hopefully more!!). Travel while you can, do things you enjoy etc.

While you won't die instantly or anything starting dialysis WILL mean changes to your lifestyle and you do need to be prepared for that. It isn't the end of the world though and that's a very important thing to remember.

I guess all you can do is monitor your labs and how you feel(just as important as the numbers) and take it from there....

[paris]

Smileeface,  You know every situation is different, but I will share mine.  Over 4 years ago, while in the hospital for phuemonia, the neph walked in (Thanksgiving morning and I was alone) and said I had 6 months until I would be on dialysis and walked out.  I called my family and changed nephrologists!  Long story short - I did just like you.  Lost weight, changed diet, went to the information meetings regarding dialysis and learned everything I could about kidney disease.  My GFR has been at 15% for over 3 years!  It goes up or down a couple of points, but I am still not on dialysis.  Some days I feel crummy, but I have enjoyed proving the first doctor wrong!!   I feel very fortunate for this time. I am not in denial - I know it is coming, but each day is one more that I thought I had.   You are doing all the right things.  I hope you have some time before making the transition.  Like everyone will tell you, each person is totally different.    Good luck!

[Stoday]

I've been deteriorating for 7 years. Eleven months ago I was told I'd be on dialysis in six months. I'm not quite there yet, but next month?

Oh I lost 56lb too.

[kellyt]

Hi.  I received my fistula in Oct 2007 and was told that I would probably start dialysis by March 2008.  I transplanted with a live donor on Nov 5, 2008 and never started dialysis.  My GFR was at 7 for all of 2008 (dropping to 6 once or twice).  I was super tired, but otherwise felt fine.  My creatinine at the time of transplant was 5.1.

Hang in there.

[murf]

It took me three years after my specialist told me that I needed dialysis. Like others who have wrote, I devoured every bit of information about renal disease, what foods to avoid, drank lots of water and lost 22 kg. After a bout of chocolate munching during an Easter period, I found myself hooked onto a dialysis machine.