I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: obsidianom on January 20, 2015, 08:08:18 AM
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I have been posting for awhile about the big lie with looking at urea and urea reduction to gauge dialysis adequacy. This also means the fatally flawed KT/V which uses urea.
I now have some evidence to back it.
My wife has been getting gradually and more seriously ill over the past 3 months. She became weaker and felt awful and then nausea severe which is always a good indicater for her ( and many of you) of inadequate dialysis. YET ALL HER LABS HAVE BEEN PERFECT. Her urea reduction and post dialysis ureas were excellent, especially for Nxstage. She was at or over 60% reduction on Nxstage which is considered perfect considering we do it 5 days per week.
Despite this she became more ill to the point 2 weeks ago she couldn't walk without my holding her up. Her labs taken that day she wasso ill were still PERFECT. I got them today to look at. Yet I knew she wasn't getting decent dialysis and that was the problem. The one lab that showed this was the aluminum that wasn't dropping as it should have on the solution bags from Nxstage. That indicated to me something was wrong in her dialysis.
To get to the point, ===Her access was badly blocked. I could see it on the fistula surface finally as it developed aneurisms and became inflamed from back pressure. I finally got her to the out of state vascular surgeon who created the fistula and he agreed with me that there was barely any flow out as it was blocked with scar tissue and a clot. He operated 2 days later to open it up. It worked perfectly as there was immediate flow and by the next morning it was soft again and the color was returning to normal. After 3 days of dialysis with the open fistula MY WIFE BECAME HERSELF AGAIN . The nausea was gone, she could walk and no longer felt ill. It was like a miracle.
So bottom line , THE LABS WE USE FOR ADAQUACY CERTAINLY LIE AND ARE FLAWED. If they had shown what was really going on, we would have had the surgery 2 months earlier. Urea reduction and KT/V are USELESS.
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Your wife is lucky to have you. I'm glad she's feeling better.
I understand what you're saying. Kt/v is not related to how you feel. But is there anything we can use that would be more helpful? Or do we need doctors to listen to us better?
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Your wife is lucky to have you. I'm glad she's feeling better.
I understand what you're saying. Kt/v is not related to how you feel. But is there anything we can use that would be more helpful? Or do we need doctors to listen to us better?
Unfortunatly there is no one good indicator for quality dialysis. You can look at phosphorus and potassium and calcium etc, but really the biggest indicator is HOW YOU FEEL. I don't think doctors use this enough as it is subjective. Yet it really is fairly accurate if you take the time to listen and think about it.
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It's interesting that your machine had the blood flow, but the fistula was blocked. Is it possible that the return line was pushing a lot of the blood down the vein in the other direction, having that picked up by the arterial line, and seeing a great URR due to recirculation?
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So the measures that our clinics use to evaluate how well we are doing are flawed. Thats not good. At least we all know how we feel. Clearly the facilities put emphasis on lab results but they do always ask me if I am having any issues.
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It's interesting that your machine had the blood flow, but the fistula was blocked. Is it possible that the return line was pushing a lot of the blood down the vein in the other direction, having that picked up by the arterial line, and seeing a great URR due to recirculation?
That is certainly a possibility but the aluminum not dropping makes it questionable. If it was simply recirculation, the aluminum should also have been lower but it actually was slightly HIGHER over the 2 months. I think the aluminum factor in this case kind of gave a unique example of watching dialysis work or in this case not work. The urea dropped but the aluminum didn't. This shows again how easy it is to remove urea while aluminum can be representative of larger more resisitant toxins.
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Your wife is lucky to have you. I'm glad she's feeling better.
I understand what you're saying. Kt/v is not related to how you feel. But is there anything we can use that would be more helpful? Or do we need doctors to listen to us better?
Unfortunatly there is no one good indicator for quality dialysis. You can look at phosphorus and potassium and calcium etc, but really the biggest indicator is HOW YOU FEEL. I don't think doctors use this enough as it is subjective. Yet it really is fairly accurate if you take the time to listen and think about it.
Thank you obsidianom for mentioning this.
I am very sorry for these frightening experiences your wife went through
and there is lots of truth in it, when you say that the labs might not be as important as how we actually feel...
... I am not sure if my experiences can assist in any way, but I was quite surprised when I realized,
how "unrefined" the dialysis-system can be and how much we - as patients -
have to work-out our own quality of life, whilst being on dialysis...
... and ... to achieve an acceptable quality of life we need to contribute ...
... When I started wth dialysis, it came as a bit of a shock when I realized,
that being on dialysis is really just my basic life-support-system... meant to keep me alive...
... and without dialysis I certainly would be buried by now...
... I then thought about creating my own quality of life "despite being on dialysis",
but then I realized, that there is not that much I can contribute,
except to keep myself as fit as I possibly can and to keep to my vegetarian diet,
... in order to assist my body to "take" dialysis as well as it possibly can...
... I then realized, that my "keeping as fit as possible" plus my veggie diet can assist my body
in a very gentle way (at the moment) to "go along" with dialysis and "take on" dialysis as best as it possibly can...
... and fortunately my body has complied so far... (touch wood for it to continue)...
Best wishes and good luck from Kristina.
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There is another part to this story. My wife originally was seen by the local vascular surgeon here in our area when the fistula was failing /clotted. He was supposed to be a new hot shot. He looked at the fistula and the ultrasound on it and declared it was a "miracle fistula". We were lucky it ever worked he declared. He was surprised anyone could have created a fistula on my wifes arm with such small veins. he then told us there was nothing he could do for the problem and to just keep using it until it clotted off. (never mind that it was barley working and she was ill from it. ---He thought she was just depressed and that was why she was quiet). He then told us he would put in a GRAFT in her chest to replace it as no one could fix her arm.
Well-----you know the rest of the story. We went out of state and had it repaired and it works PERFECTLY . It is running as I write this . The pressures are 180 for both arterial and venous and it looks great.
So the moral is NEVER GET JUST ONE OPINION. There are many idiot doctors out there.
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I am very sorry what you both went through and that sort of thing happened to me as well,
when at one time I asked different doctors for their medical opinion about one particular medical matter
and I came away with different answers, which left me confused about what to do...
There is one matter I never forgot though...
... After I was brought to hospital in a coma with uraemia and complete kidney failure in 1971,
my kidneys slowly and miraculously recovered a little, whilst I was in Intensive Care...
Then, a year later, when I had recovered further and had become stronger, a kidney-biopsy was taken
and the biopsy diagnosed me with Chronic Proliferative Glomerulonephritis.
Unfortunately, the biopsied kidney was bleeding profusely and could hardly be stopped,
and as a result I was transferred to Intensiv Care again, until the kidney stopped bleeding and I slowly recovered again.
I was then told by the doctor who undertook the biopsy, that I should never ever have another kidney-biopsy,
because such an intrusion to my kidney would be too dangerous in my case ...
Fortunately I recovered well from it all and the recovery of my kidneys through the coming years was ~ 40-45% function.
... Strangely enough, every nephrologist I consulted with afterwards,
urged me for another kidney biopsy to see ...(I wish I would know what they wanted to see ? ) ...
...But there was no luck, because by then I had become very protective and would not allow it...
and I always quoted the doctor who told me, I should not have another kidney biopsy...
... and so it has remained... Sometimes I wonder whether my kidneys functioned for another 43 years,
because nothing intrusive was done to them after the biopsy in 1972 ?
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That is certainly a possibility but the aluminum not dropping makes it questionable. If it was simply recirculation, the aluminum should also have been lower but it actually was slightly HIGHER over the 2 months. I think the aluminum factor in this case kind of gave a unique example of watching dialysis work or in this case not work. The urea dropped but the aluminum didn't. This shows again how easy it is to remove urea while aluminum can be representative of larger more resisitant toxins.
I think the real lesson is that one should strive to feel well AND have good numbers.
I am at 102.5kg EDW. The clinic had me on a 30L NxStage Rx that just met their goal (40% urr to get 2.0 weekly Kt/V). I was feeling really well, but didn't like riding lab numbers so close to the edge. I asked for a bigger Rx, so they upped me to 40L (the most that the System 1 at 12L/hr dialysate will do in about 3.5 hours) and not have a URR that ranges from 47% to 49% and a kt/v of 2.4 - 2.5.
No matter how good your home support team is (I am lucky to have a great neph and RN on my case), one still has to be their own advocate.