Why the variations on when to start D?

[Sunny]

I just don't understand why there is so much variation in when to begin dialysis?
I am aware it depends on the subjectivity of how the patient is feeling, but there seems to be huge differences in what physicians reccommend.
You would think a more stringint guideline would exist. For example, my doctors all tell me I should be able to last down to 8 - 10 % GFR. I have had four doctors tell me this. They all tell me it has to do with new studies showing hanging on to your own kidneys as long as possible is best.These studies also show survival post dialysis is the same regardless of whether you start dialysis at 15% or 8% function. Are they just trying to save money for Medicare? or do they really have my long-term health in mind?
What are your understandings regarding this issue?

[paris]

I wish I knew the answer to this also.   I will be anxious to hear everyone's answers.

[monrein]

I started (second time around, I was half dead the first time) when I was at 16% because I felt wretched, zero appetite, metal ammonia breath, simply awful.  My neph didn't hesitate and said that he didn't want me to become malnourished, stop all activity and basically sleep all day. 

The first time, I went in to see my neph and was hospitalized and dialyzed the following day...I had bruises all up and down my legs, was skinny as a stick and chewing gum would dissolve in my mouth. 

[MooseMom]

I'm as skeptical as the next guy, but I believe my neph and his nurse when they tell me that I'm ok until I get to between GFR 8 and 10.  I'm at 15 now, a sharp and quick decline after being at around 21 for some years.  I'm getting my fistula on Monday so that when the time comes, I'll be ready, but I intend to make that call.  I don't feel too brilliant now, but if I'm honest with myself, I suspect that anxiety is the culprit. 

Dialysis is not good for you.  It may keep you alive, but it is not good for you.  I intend to keep going until I feel ill to the point where I'd welcome dialysis if it would meant I'd feel better.

I honestly do not think that saving Medicare money is behind anything your doctors have told you.  I am not old enough to be on Medicare, and my insurance through my husband's employer will cover my dialysis for the first 30 months, and I doubt that my neph is particularly interested in saving my insurance company any money.

[Romona]

I think it has to do with how well toxins are being cleared. My creatinine had improved at one point from 5.5 to 3.2. I was so excited to see the improvement, but my neph said that toxins weren't being cleared and I was showing more signs of being ready for it. I was becoming more confused. Fortunately I was able to get a transplant before I had to start. I thnk they look at protein levels ect.

[chiefsfan301]

My eGFR was at 13 when I started but my Hemoglobin and Hematocrit had moved way below the normal range and I was just draging myself around.

[MooseMom]

My eGFR was at 13 when I started but my Hemoglobin and Hematocrit had moved way below the normal range and I was just draging myself around.

Yeah, my hemo levels are starting to decline. 
I guess we can refuse to go on D if we think we are being railroaded into it.

[Rerun]

I think they start working on you around 15 because most people protest and finally go on around 10.

No I do not think they are trying to save anyone Money!  That is the last thing on their mind.

[galvo]

My neph was on to me for ages to get my fistula op but, being an idiot, I put it off until I was down to a GFR of 5 and they wacked a canula in my neck.

[sullidog]

I was feeling really bad then they saw the blood tests, and the rest was history, it was emergency dialysis with hospitalization for me.
Troy

[glitter]

I am not old enough to be on Medicare, and my insurance through my husband's employer will cover my dialysis for the first 30 months, and I doubt that my neph is particularly interested in saving my insurance company any money.

Being on Medicare  is not a matter of 'being old enough' - People in the US who get ESRD and start dialysis automatically get approved for Medicare, its not based on your age.thank goodness- It may be secondary depending on your ins. circumstances, but you will get it.

[okarol]

I started (second time around, I was half dead the first time) when I was at 16% because I felt wretched, zero appetite, metal ammonia breath, simply awful.  My neph didn't hesitate and said that he didn't want me to become malnourished, stop all activity and basically sleep all day. 

The first time, I went in to see my neph and was hospitalized and dialyzed the following day...I had bruises all up and down my legs, was skinny as a stick and chewing gum would dissolve in my mouth.

That describes Jenna the first time: skinny, sleeping a lot, and no appetite, and confusion too. She won't wait that long this time. It's better to have toxins cleansed and not let her health be in the danger zone before starting.

[RichardMEL]

I have a couple of comments here.

10% GFR has been the "standard" point for some time - but it's really a number picked at random, and it's nice and round so it kind of works.. however different people react differently to kidney failure and may need dialysis earlier or later depending on their own situation(just look at the responses above!). This is one of those situations where truly no one size fits all.

In relation to the "recent studies" thing - I was involved in exactly such a study starting back in 2003. Back then I was around GFR 13ish but I felt OK. Neph said normally we'd start around GFR 10 but he asked if I'd go in this study about the ideal time to start dialysis and the effect of that decision on wellbeing and outcome. I think the study concluded last year (as I had to fill in patient diaries on a regular basis until I think the middle of last year). Anyhoo luckily for me I was selected in the "LATE START" group, which meant that they kept me off D until my GFR got to 6. I was feeling OK but I think the doc at that point decided it was time to go on due to other lab results. In my case I think I did OK starting later - but I am not certain that would hold for everyone.

As they said at a seminar I went to in 2002 or 2003 that everyone is different and just because the labs say one thing it's also about how you feel - if you're too sick to function normally at GFR 15 then you need D. If you're doing OK at GFR 9 you probably are borderline, but they MAY let you go a bit longer if you're coping OK.

I'm so glad I didn't get allocated the EARLY START group!!!!

[okarol]

I am not old enough to be on Medicare, and my insurance through my husband's employer will cover my dialysis for the first 30 months, and I doubt that my neph is particularly interested in saving my insurance company any money.

Being on Medicare  is not a matter of 'being old enough' - People in the US who get ESRD and start dialysis automatically get approved for Medicare, its not based on your age.thank goodness- It may be secondary depending on your ins. circumstances, but you will get it.

True. Jenna's Medicare benefits began when she started dialysis at 18 years old.

[Sunny]

I agree with all that you have to say.
Maybe they start warning you at 15-20% GFR so that when it really happens at 8-10% GFR you'll actually start the process to go through with it.
It just seems there should be a more definable medical consensus about when a person starts dialysis.
Sounds like you make for a good case study RichardMEL.

[RichardMEL]

Well thanks Sunny but I suppose I am just one part of the dialysis population. I mean I'm relatively young (don't feel it!) and active, have a healthy heart, liver etc - really nothing wrong apart from the kidneys. This may be quite different to someone who's 82 with other problems - again you can't say one size fits all, or one number fits all. In the end though it comes down to a judgement call from the medical professionals and the patient (or should do, I think).

[Ken Shelmerdine]

RichardMEL Here in  the UK there seems to be a one size fits all mentality in many aspect of dialysis. I wish it was a case of staying off dialysis until you start getting symptoms because if that were the case I am pretty sure I would still be predialysis now. They started me at 7% GFR kicking and screaming because I didn't feel ill in the slightest. They said I will pretty soon so lets get prepared with an APD catheter and train you up for APD which I reluctantly went along with.

This was four years ago and I am convinced that I could live a normal life without D even now although I've no way of knowing that because the fact that I am still outwardly symptom free could be presicely because I dialyse.

What I do know is that in between APD and starting Haemo I was dialysis free for almost four weeks because I stubornly refused to have the neck line put in for Haemo and during that time I felt no ill affects whatsoever. That was only a year ago. My GFR is now supposedly 6% and I still feel 100%

I'd like to go back to the renal doc who said that we need to prepare you for dialysis because if not you will soon start to be sick and say well if that was the deal then it hasn't happened so can I come off dialysis now? Some how I know what the answer would be.

I know my wife Rita would be horrified if I did and I can't put her through the stress it would cause her and that's why I won't do it.

[MooseMom]

Re medicare, yes, I realize that ESRD makes you automatically eligible for Medicare, but my point was that I am not old enough to have to rely on Medicare solely.  I still qualify for coverage under my husband's employer's coverage which will be primary for the first 30 months; after that, Medicare becomes primary and our private insurance works like an excess layer.   I was just trying to reassure the original poster that my neph would not be interested in preserving a health insurance corporation's bottom line.

[RichardMEL]

Ken 7% is pretty low. Yes, I felt OK at 6% when they started me, but I honestly think they were going off other lab issues than just the eGFR value - I think my calcium and potassium were getting a bit out of control and as we all know, specially with Potassium, that can lead to serious @#*)@#*)@@ if it goes unchecked - and if your Ca and PO4 get out of whack that can lead to serious bone disease.

I think there comes a point where it becomes a fact that even if you feel OK leaving it could become dangerous.

I'd also argue that in your case they *didn't* apply a one size fits all to you - otherwise you probably would have been on before 7% - like around 10% GFR. Seems that they left you as long as they felt safe because you were feeling OK. I guess your view differs but that's my take on it from what you wrote.

[Jie]

A lot of us are thinking that eGFR accurately measures our kidney function. It is not true. eGFR predicted only the mean kidney function for a population. The true individual kidney function may be quite a bit difference from eGFR. With the same kidney function, eGFR for a patient with little muscle and for a patient with a lot of muscle may be a huge difference. So, a patient with a 10% eGFR may feel like a crap while another patient may feel great.  eGFR is just one factor for starting dialysis. Another factors like BUN and how patients feel need to be considered too for starting dialysis. The cause for the kidney failure also plays a role to start dialysis too.     

[MooseMom]

The cause for the kidney failure also plays a role to start dialysis too.   

Could you explain this further?

[Sunny]

Jie,
Would a person with a lot of muscle mass conceivably do better or a person with little muscle mass? (I'm a skinny 114 pounder with muscle mass slowly wasting away).

[Jie]

For the cause of kidney failure, I know that a diabetic patient would start dialysis earlier than a PKD patient. PKD patients can hold on for longer without feeling like a crap and transplanted survival rates are also good for PKD patients too.

For muscle, creatinine is a measure of skeletal muscle waste. With the same kidney function, the creatinine level would be higher when one has more skeletal muscle. So, eGFR estimated from a patient with a lot of muscle would underestimate the true kidney function, and eGFR estimated from a skinny patient would overestimate the true kidney function.  For the same reason, men tend to have higher levels of creatinine because they have more skeletal muscle than women (this is the reason why the eGFR formula is different between men and women). Vegetarians tend to have lower creatinine levels, because vegetables contain no creatinine.

To answer your question, Sunny, with the same level of creatinine, a person with a lot of muscle mass would do better than a skinny person (sorry for this answer). That is to say, the true kidney function is higher for the person with a lot of muscle mass than a skinny person under the same level of creatinine.

[MooseMom]

That makes sense.  Thanks for that explanation!

[Sunny]

Not only does it make sense, but it explains a lot too.
My doctors at Stanford keep telling me I shouldn't be feeling as lousy as I do at 15% kidney function and I keep saying,"I'm just telling what it's like for me." Maybe since I'm skinny I feel it differently. Also, I haven't been suffereing from kidney disease my whole life so my body seems to rebel against the diminishing capacity of my kidneys and the wasting away of my muscle and fat storage. Some people think I am lucky to not have a weight problem. I DO have a weight problem: I can't gain it and I have trouble keeping it where it is.