Timeline

[Sluff]

My Nephrologist told me that I was to expect to be on dialysis anywhere from 2 to 6 years from the date of my diagnosis of FSGS. How accurate do you think nephrologists are when they give you a timeline? I was told this almost 4 years ago and things are still going fairly well.

[Nephrologista]

Timeline is really, really hard.  You can have some clues - like the amount of protein in the urine, the blood pressure, the trend in the creatinine over time - but it is really very variable.  I don't know of any studies that show how good a job we do.  I try very hard to get patients educated as to their choice of dialysis modality and proceed with fistula placement if they choose hemo when the GFR is around 25.  Our transplant center will see them for preemptive transplant at that level as well.

[MooseMom]

I was diagnosed in 1992; I don't know what my gfr at that time was, but I do remember creatinine at 1.9.  Then I entered a long period where I didn't see a nephrologist, only a GP as my son was newly diagnosed with autism and that was all I cared about.  But in 2004, I saw a new neph and he told me that he didn't have much hope for my kidneys.  My creatinine since then has crept up to just over 3 (but it's now 2.7) and my gfr, which had been in the low 20's, has recently dipped to 18, and that's why I'm now on the list.  I don't know why I was stable for so long (although at stage 4) and then suddenly went below 20.  I have fsgs, but no one seems to know why or how or what or really much of anything.  But I've done everything I can do...follow the diet, take the pills, had the fistula, got on the waiting list.  Now I'm just waiting for the sword to drop and for the inevitable to happen...dialysis.  It's a true horror.

[Sunny]

I was given a timeline of 6-10 years after my kidneys became scarred. That was in 2001 and I'd say my nephrologist was very accurate.Plus I have been warned the lower the GFR gets, the quicker the decline. I hope you can prove them wrong Sluff.

[Pam]

I'm Diabetic. In 2000 I was told I had approx. 2 yrs before "D". I stayed at 25% until 2008. Once I hit 20% things went downhill  pretty fast. I had a fistula done Dec 08 and started "D" May 09. Do every thing they say and follow that low protien diet. When they do start telling you it's time to start, don't fight it. It's going to happen and you don't want to be so sick you can't put one foot in front of the other. Good luck!
Pam 

[paris]

I was told I would be on dialysis in 6-12 months and that was 6 years ago.   Never started!   I was at 12% for about 2 years.    I do think all the knowledge I gained here helped me prolong my timeline.   

[okarol]

At age 15 Jenna was told she would be on dialysis in 1 to 5 years. It was 3 years 8 months from that prediction.

[Jean]

Well, I do think they are fairly accurate. How, I have no idea. I was told 2 years, which will be up in Feb, and so far I am still at 24% GFR.

[Stoday]

My kidneys kept going for some years without deteriorating much. Then the decline suddenly became precipitate. I think that for some people the date is unpredictable because the rate of deterioration varies a lot.

[Deanne]

My neph has never given a predication, other than that I shouldn't expect to be using my native kidneys when I'm 80. She keeps telling me I'm doing much better than she expected though. I've been seeing her for about 14 years and I'm at about 20% function now. I think I was at around 50% when I first started seeing her. My own estimate is that I'll start the transplant eval process within the next year.

[Sax-O-Trix]

I was told I would be on dialysis in 6-12 months and that was 6 years ago.   Never started!   I was at 12% for about 2 years.    I do think all the knowledge I gained here helped me prolong my timeline.

I'd take that!