I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: flipperfun on July 29, 2011, 10:32:04 AM
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Hi everyone, have just returned from my dialysis unit and am puzzled about what was said to me today.
My clearance rates are high, and have been since I started dialysis, but this month they are even better. Great news. URR 90% Kt/v 2.7 which is the highest in the unit. Today they reduced my hours on the machine and said they will review this next month. The upshot is I may have an option to dialyse twice a week instead of three times a week. All of this sounds fantastic but......
Truthfully this is scaring me. At the moment I do feel well, will less dialysis make me feel ill again? I battle with my weight, I am under weight and have struggled to put weight back on when I lost it earlier this year. I am winning the battle and am only 0.5k below what I was a year ago. The thought of going back to not feeling hungry again, or having less energy is worrying me. Should I be worried if my unit reduces my time even further?
One thing I do know is that if they are pulling off the same amount of fluid in less time, my blood pressure could drop. I have had issues in the past with low blood pressure. Conversely, if I dialyse only twice a week, my blood pressure may go too high? I imagine the fluid restriction will really cheese me off!
I suppose I believe that 'if it ain't broke don't fix it'! So why would the renal team be wanting to alter my dialysis prescription? Is it dangerous to have too much dialysis?
Any thoughts would be very welcome indeed.
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I would tell them that you would rather reduce your time and stay at 3 x a week. We all know that more is better for you. Why risk going to 2x a week and have to fight what you eat and drink? Or just tell them you want to stay at what you are. I do nocturnal and my KT/V was so high Medicare was starting to question me even being on dialysis (I don't pee at all)..... So they gave me a less efficient dialyzer. Didn't make sense to me but I feel the same. It's all about the numbers. Crazy :urcrazy;
Remember it is your body SO tell them what you want.
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I suppose I believe that 'if it ain't broke don't fix it'! So why would the renal team be wanting to alter my dialysis prescription? Is it dangerous to have too much dialysis?
Any thoughts would be very welcome indeed.
I would think the only time you could have 'too much' dialysis is if you start pulling off too much calcium, phosphorus, or potassium (and there's probably no danger of low phosphorus if you're on conventional in-center). If that were the case, though, you could simply have them change the concentration of your bath, modify your medications, or loosen your dietary restrictions - or all three. I don't see how reducing your time is going to solve anything and - like you - I would be very concerned about the fluid build-up and the higher UF rate you'd have to endure.
I do nocturnal - 10 hours every other night - and my clinic is simply thrilled with my numbers (kT/v=4.0 and URR=88%). It makes them look good and I feel great; no one has suggested any changes and I'd challenge it if they did.
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I'm part of the "more is better" crowd. When my team suggested cutting my time, I just refused. In fact, I pushed for a higher pump speed and tried to get a bigger, better filter. When they are saying your numbers are good - they are saying they meet minimum government standards, not that you suddenly have the same lab results as a healthy person!
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I'm part of the "more is better" crowd. When my team suggested cutting my time, I just refused. In fact, I pushed for a higher pump speed and tried to get a bigger, better filter. When they are saying your numbers are good - they are saying they meet minimum government standards, not that you suddenly have the same lab results as a healthy person!
Ditto - My mind set was `more is better`
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Remember it is your body SO tell them what you want.
AMEN!!!! :2thumbsup;
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I'm part of the "more is better" crowd. When my team suggested cutting my time, I just refused. In fact, I pushed for a higher pump speed and tried to get a bigger, better filter. When they are saying your numbers are good - they are saying they meet minimum government standards, not that you suddenly have the same lab results as a healthy person!
My views exactly.
A healthy kidney is working for you 168 hours per week. The closer you get to that with dialysis, the better you are.
In fact, while my neph thought I was doing OK, I had seriously suggested increasing my time on dialysis to do even better. (He said no, that insurers wouldn't pay for it without a clear need.)
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More s usually better although you can over dialize. According to Dr. John Agar when you do nocturnal you shouldn't do more than 3 nights at once because it brings your phos, potassium, etc too low!! He suggests doing cycles of 3 nights , a free night, 2 nights and a free night. Hubby script at the beginning was 8 hours 5 nights a week. He cut back to 7 hrs and his blood work results are the same as when he did 8 hrs. Hubby never takes more than one night off at a time. 3 x week is what some people call maintenance dialysis - just keeps you from getting sick from the toxins. When hubby was in center he was getting about 13 hours a week dialysis - now he gets at least 35 hours. A couple of times it was suggested that hubby cut his time on dialysis and he refused. he was doing 4.25 hours a treatment. About a year after he started hemo the doc cut him back to 3.5 hours a treatment and he didn't feel as well so he asked to go back to 4.25
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the more the better!
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Kt/V and URR are not good markers of dialysis when correlated to mortality and morbidity. Scribner got it right with his Hemodialysis Product that correlated duration of dialysis X frequency squared with mortality and morbidity with greater precision.
http://www.therenalnetwork.org/qi/resources/HDP.pdf
Kjellstrand, et al showed a direct correlation between total weekly dialysis time and mortality. Those with less than 12 hours per week had the highest mortality and those with more than 15 hours per week had the lowest mortality.
http://depts.washington.edu/nephron/print/Kjellstrand.pdf
I have seen too many folks that refuse any more than 3 hours of dialysis with each session have adverse long term outcomes. My personal view is if you need dialysis, then get as much and as frequent as you can. You may wish to discuss these studies with your neph and see what they say about your specific case. There are many factors that go into this decision that you have not noted in your post such as how much you weigh, how tall you are, what you baseline Crt clearance is by 24 hour urine collection. In general, the more the better if people wish to survive longer than the median 36 months survival of the average American dialysis patient. Getting daily dialysis whether short daily or nocturnal is the best survival strategy if you are not eligible for a transplant or have no living donors.
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Hubby (even though we are in Canada) has exceeded the average life expectancy of 36 months. It's been 14 years and he is still doing really well.
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Hubby (even though we are in Canada) has exceeded the average life expectancy of 36 months. It's been 14 years and he is still doing really well.
I loooooove hearing stories like this!
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Many, many thanks everyone for your kind replies.
Sorry Hemodoc, but what you have written has slightly freaked me out, and I know your intention is to educate me! Mortality rates freak me out! I know, I am burying my head in the sand, but I DO acknowledge, reluctantly, how precarious life is on dialysis.
I am very small person, around 4 feet 5 inches tall and my dry weight is 28.5 kilos. No I am not anorexic, I have had Rheumatoid Arthritis since childhood. I never grew to a full sized adult and have remained 'small' all of my life. Because of my very small size deciding when to start dialysis was problematic and I put it off for a long time until my Nephrologist wouldn't allow me to any longer. I have battled with keeping my weight up since starting dialysis, and it is a constant battle. This is why I am so very puzzled about the decision to reduce my hours, because I have just had the best 3-4 months ever. I now have a good appetite. My CRP levels have always been elevated due to the Rheumatoid factor/Amloidosis. These too have now dropped. It has always been an enigma, because of the amount I have eaten in the past, why I wasn't heavier. Since ESRF my appetite has really fluctuated.
Not sure if this sheds any more light on the subject, but today I will be requesting an appointment with my Nephrologist. I need to understand this and be a part of the decision making process. I am from the UK so don't know if things are different here in the way the medical profession works.
Thank you for being so helpful. Will keep you posted
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I would suggest that you go to Home Dialysis Central, and ask this same question to Dr. John Agar from Australia. He detests Kt/V and believes time on needle is much more important for long term survival. I would suggest including as much clinical information as possible such as height, weight, frequency and duration of dialysis and Kt/V before and after they reduced your times.
http://forums.homedialysis.org/forumdisplay.php/16-Dr.-John-Agar-Nephrologist
You might then consider taking his response to your provider for a comment. I already know much of what Dr. Agar will state, but it will be worthwhile on your part to get his knowledgeable opinion.
I hope this helps.
God bless,
Peter