I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kristina on August 22, 2011, 02:19:28 PM
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It just occurred to me, that it is an odd coincidence
that I was told by two nephrologists in two different hospitals
that I would be on Dialysis within 6 months.
The first prediction was exactly 5 years ago, the second was roughly ~ 3 years ago.
Why did both nephrologists give exactly the same prediction?
One of them could have said something different like for example 8 months, a year, 14 months?
Why were their predictions identical?
Why did they not say “it is up to me”, or “no one can predict it”? Why precisely 6 months?
Has anyone been told it would be 6 months for them to be on Dialysis?
Is 6 months a common prediction, and if so, why?
Both nephrologists wanted me to be transferred to the Dialysis Unit straight away.
I wonder, If I had gone along with their suggestion could they have possibly controlled
the lengths of time before I would be put on Dialysis?
My point may seem odd, but it just came into my mind
why two different nephrologists had predicted I would be on Dialysis
in six months – and yet, here I am all these years later, still pre-Dialysis
without the pre-Dialysis-symptoms.
Has anyone any experiences about this?
Thank you from Kristina.
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Seven years ago, I saw my current neph for the first time, not knowing how bad my renal function had become. I had just moved back to the US from the UK, had remarried and was going for my first physical exam for insurance purposes, and it was through that initial bloodwork that revealed how bad my kidneys had deteriorated since first diagnosed with fsgs in 1992. The neph said that he didn't hold out much hope for my kidneys, but he didn't put a time frame on it. He must have thought I'd be in kidney failure soon, though, as he set me up with a pre-transplant eval immediately. I was not approved for listing because my egfr was still over 20, but obviously the neph thought that by the time the transplant team saw me, I'd be below 20. Now here I am 7 years later, still not on D but now on the list.
Almost 2 years ago, my egfr finally went below 20, and I asked him for a guess of how long it would be before I had to start D. Well, you guessed it...he said I had "Six months to a year." That was 20 months ago. So yeah, maybe "six months" is a standard reply, but it is largely irrelevant. It may be longer, it may be shorter.
Goes to show that the human body is in many respects still a mystery.
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It must be a number they use.
I was told I would need to start dialysis in 3-6months.
My Dr decided to start me at GFR 13-15% in 3 months from when she told me.
My Dr likes to start her patients before they drop below 13% because it's easier to recover and maintain residual kidney function. After 6½ yrs on PD I still had 8% residual kidney function at time of TX.
I guess I could've waited longer based on what I know now, but I was afraid of getting too sick and not being able to work for some time.
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Well, patients want answers and doctors hate saying "I don't know." If they say "within 6 months" and things get drastically worse almost immediately, then the patient isn't surprised. Maybe they figure if it's longer, we'll just be grateful and not annoyed!
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Interesting.
I was told six months initially, after knowing I'd be on dialysis eventually for six years.
The six months turned out to be a year.
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In 2004, when i found out my "good" kidney had also failed, my dr told me i would have about 10 YEARS before i would be in dialysis....
2007 I started dialysis not knowing a darn thing about it!
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DBF's neph didn't give him a time frame. At 20% she said let's start the process. At 15% two months later she said it's time for dialysis. .
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I was given six months by a nephrologist... 26 years ago.
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Well, here's a good one. I, or rather my parents, were told when I was 8 months old that they should take me home from the hospital and that I had six weeks or so to live. I turn 58 (years not weeks) old this year. What they shoulda, coulda, I wish they woulda done was treat my reflux and kidney infection with an antibiotic.
Medical predictions are to be heard but not necessarily believed.
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I've told my story a few times, but in 1993 I was given "two years" - and I wound up lasting 13 before I needed D.
I think the problem is two-fold. Say you're seen initally - perhaps, like me, aomsehing odd was picked up during a routine checkup (eg: protein in the urine, higher than normal creat, high potassium or something) and you're referred to a neph. All they can go on is the labs in front of them, and make a guestimaion. We all know that kidney disease, depending on the type, can progress at different rates. Luckily I had slow moving FSGS (had? have....) but that was not known at the time I was given two years. Indeed no diagnosis was known as a biopsy was not done for 4 years to even figure out what was going on. Anyway the only way you can get a more accurate idea of time is to take a trend over time - the longer, the more accurate - but even then it's still a guess - some forms of KD can be slow until you hit a certain point and then progress more rapidly. There's so much unknown that really a lot of it is guesswork to a certain extent - and that's not even taking into account that labwork can vary depending on the day it's taken, diet, etc.
The other thing I think is an issue is that different nephs use different "triggers" or levels - down here, it's apparently GFR 10. As we've read some other places/docs it can be 15%. I've always felt it should not be tied to a specific number, but an overall assessment including how the patient feels - if you have horrible symptoms at GFR13, then don't wait!! If however you're at GFR 10 and feel good, and no real issues - why not wait? I wound up starting at GFR 6 - and even then I felt mostly tired more than anything else (by this time I was taking binders, aranesp and so on as drug support). I think the neph decided it was getting too low to keep waiing, and that makes sense to me that you do need a certain lower limit (and recent studies have suggested that starting D as "late" as possible have no negative impact on the outcome compared to starting much earlier, say around GFR 15, if the patient isn't suffering bad symptoms.
Another thought comes to mind and that is of docs responsibility/requirement to inform a patient of all risks, potential outcomes etc. As we know in some societies it's quickr to hit the "sue" button than others - and medicine is such a tricky field with many unknowns or variables you can't predict, that I imagine some docs are erring to the absolute "worst case" scenario in their view so that if you need to start in 6 months... well you were informed, but if you manage to get theough to 6 years, well that's all a bonus. So I wonder how much of that sort of "CYA" thinking is out there - give the "worst" prognosis, hope for and expect a better one, but just in case, prefer the patient for the worst (and there's a side "benefit" to the neph that say they give you 6 months, but you're still off D a few years later, the neph looks like a genious because they've kept you off it for so long with their care!!).
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Thanks for all your kind replies.
Well, what can we make of this? Of course, we can only generalize,
but the “six months to a year” could be a commonly used prediction
because, as was said, if you need Dialysis within this period of time,
it comes as no surprise, and if you last longer without Dialysis, the credit could go to the doctor
and it makes a patient feel better to last longer without Dialysis.
What was noticeable about your replies was that nephrologists
seem to form their own criteria for when to start Dialysis,
there doesn’t seem to be a general set of criteria beyond which Dialysis is set into motion –
of course one could say that this is because each kidney-case is judged individually.
So, it seems, there are no particular medical rules set about when to start Dialysis.
Having said this, I am still left feeling uneasy about nephrologists and their predictions.
This is because, and I can only speak for myself, they never helped me to find ways
to refine my diet etc., or assist me medically, to prolong my kidney-function for as long as possible.
This has bothered me. I can understand a nephrologist looking at a specific kidney-failure
and judging that in their experience the patient may have “six months to a year” before Dialysis,
but why don’t they assure a patient that they will do everything in their power
to prolong the kidney-function for as long as possible?
The nephrologists I met did not even attempt to help me prolong my kidney-function,
they just made their prediction, abandoned me and said nothing could be done and that was it
and they said they would refer me to the Dialysis Unit.
It is very important for me to say here that when the nephrologists said this to me
I had no physical symptoms; it was only my Creatinine, plus a couple of other blood-results,
that they were using to make their predictions.
This is important to take into account, and this is why I became bothered about their integrity.
So, on the one hand I can try to understand the “six months prediction”,
but on the other hand something still bothers me about it.
I was left to struggle by myself, and I used the Internet to refine my diet,
and then 2½ years ago I found IHD where I have been fortunate to find help and advice.
This is what I did to keep my kidneys going for as long as possible
without having the common symptoms associated with ESRF.
This I have been doing now for 5 years.
Thanks again for your kind replies, Kristina.
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Thank you for a great topic, Kristina. When I was first educating myself about kidney disease I was lucky enough to find IHD about my 3rd day of looking through the internet (I was looking for life expectancy and was taken directly to a thread). In those early days I was so poorly educated and it's only through the sharing of people like yourself and this site (MooseMom, kellyt in particular) that I realized that this disease can take a long time to develop. It was from there that I took that education, inspiration (I love reading your posts, Kristina) and formulated a plan (a great guideline was a post by OKarol) to take care of myself to try to combat the progression of my disease. I feel like I'm in about the best shape of my life: I've lost about 40 more pounds (and gotten rid of my sleep apnea that was causing so many issues), my cholesterol is down from the 240s to 150s, my creatinine has gone down (mostly due to adopting a vegan lifestyle, but I'll take that), my protein in my urine has decreased slightly and stayed within the microalbuminuria range (less than 300 mg of protein per day), I'm on a diet that is incredible for my overall health (Nutritarian), I'm taking good supplements (Omega3, CoQ10, alpha lipoic acid) and not taking stuff I don't need, and have more energy than I have had in years. People sharing information that's in a thread like this give me great hope that if and when I face those tougher nephrologist appointments, I'll know a lot more than my doctor giving me ole "6 month" estimate. If there's one thing I've learned at IHD (and it's been a crap ton more than that), it's that generally doctors are not there to take care of you, they are there to treat your immediate needs. I'm lucky enough to also have a great Family Doctor that I go to and works with me, adjusting my blood pressure medications and monitors me through my "plan".
Thank you Kristina and everyone for showing me how to fight the good fight and inspiring me beyond words. :boxing; :bow;
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Thank you, Kim, for your kind thoughts.
I am so glad that you are doing better with your diet
and I do hope it keeps you Dialysis-free for many years to come.
You are very lucky to have a good GP (family doctor)
who can assist and help you to continue as you are.
Unfortunately I have no GP I can go to,
and when I needed support from a GP,
I was only informed to go back to the nephrologists
who gave me 6 months before going on Dialysis.
There is no point for me to see such a GP,
and no point in going to any of those nephrologists,
because I want to be given a chance to see
whether my kidney-function can get better.
My experiences have left me unclear as to what doctors are for:
Preventative medicine? Diagnosis only? Support and advice?
If a nephrologist gives you six months before Dialysis
and abandons you and refers you to the Dialysis Unit,
what does the nephrologist achieve from this?
What is their angle?
Nephrologists can study the declining kidneys,
but surely there is the other side to nephrology
of helping the kidneys to get better?
Why dismiss so readily cases like myself ?
What are they in nephrology for?
Thanks once again for all your replies, Kristina.
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Kristina,
I think you've raised two importzant points -
1. There's no generally set guidelines for dialysis start
2. Nephs not assisting pre-dialysis
I want to stress that those are, in my view, generalised points (not meaning this as a negative to you, Kristina) - because I can think of examples of both of those general issues where I know of opposite cases. For example, after trhe first "bad" neph I saw who gave me "two years" I went to the most awesome neph ever, who my mother had worked with, and was professor of medicine and the 2nd best university in the city. Anyway he was very GOOD with me. He focused on controlling my BP via an ACE inhibitor (which recent studies have shown tend to lower the progression of some kidney diseases, like FSGS which I have) and also gave me general comments about diet (eg: low, no salt, and later on binders and the like). I would say he was medium proactive in working to keep my kidney function as good as it could be. He was never super-anal about my diet though and probably could have done more, but with the very slow progression of my FSGS he probably thought it wouldn't make much difference diet wise, since my labs were good, but to concentrate on sources of increased blood pressure such as salt.
Anyway to the first point - I sort of mentioned this in a previous reply, but I think many nephs either go off a standard set by their particular unit/hospital they are attached to, or they are guided by their own expereicne. We all know the "general rule" seems to be GFR 10. However we also know of man variations. I think a lot of it also comes to personality - some are more conservative, and they may be the sort to push to start earlier.
Over about 5-6 years I was involved in a study to determine if starting D "early" or "late" was better or worse in terms of medical and lifestyle outcomes. Thank Goodness I was picked to be in the "late" group!!! Phew! I didn't start till GFR 6 (as I also mentioned earlier). The survey results came out last year and it seems that they supported that, in general, starting D later had no contra-indications.
Of course that is all very general stuff.. because if you're GFR 13 and throwing up and not operating, then you *need* dialysis. Simple as that.
I've always advocated a flexible approach to this rather than having set rules and numbers anyway. At GFR 10 I was functioning fine, full time working, travelling, drinking, harassing girls etc.. the usual stuff. If they'd said "ok you've hit the magic number. You start now!" then well I would have done it, but I wouldn't have been too happy about it.
So in a way, I support that different nephs have different "standards" but only to the extent that I hope they're not hard and fast rules, but more suited to each patient's specific circumstances.
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My neph hasn't said "six months" yet. I've been seeing her for 10 years and way back at the beginning, she said she didn't think I'd be using my native kidneys as an 80-year old. That was her only prediction. Instead, she uses facts: "When your creatinine reaches 3.0, I'll refer you for a transplant evaluation." She shows me the progression on a graph every time I see her, so I can track it for myself.
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Thank you very much for your kind replies.
What seems to be coming out of this thread,
is that nephrologists do not follow any basic guide-lines when confronted
with a patient in the stages of kidney failure.
Some nephrologists make graphs to track trends, some may advise on diet,
some may be optimistic and others just point to the dialysis unit;
surely a consistency in treating ESRF patients is lacking.
This seems extraordinary when one considers
this potentially life-threatening position which an ESRF-patient finds themselves in.
It is also extraordinary given the professionalism of doctors.
One would have hoped there would be a general set of guide-lines to follow
in order to preserve the life of a patient
desperately struggling to keep their kidneys functioning.
Thanks again from Kristina.