Kt/V - enough already!!!

[cattlekid]

So I've been on NxStage now for about three months.  Apparently, according to my bloodwork, my Kt/V is slipping below their 2.0 threshold.  I am being told I have to have extra time on the machine or go to 25 L from 20 L. 

Now here's the kicker.  I feel great.  I feel about 1000% better than I did when I was in-center.  My hemoglobin is good as is all of my other bloodwork.  From everything I have read, Kt/V doesn't really hold water when it comes to really determining whether dialysis is "working" for you.

I totally understand that my clinic is measured by things like Kt/V, but does anyone have any compelling arguments that I can give my clinic as to why they should stop looking at my Kt/V and start talking to me about how I feel?

[boswife]

Can i ask how long your on the machine?  Hubby Bo started w/17 Dialysate, up to 23, back down to 20 then 19 (but that was because my machine at the time was calculated a bit off and was going dry if we tried to go 20) and now back to 20.  I know everyones different but we were hoping to stay w/ the 20 and so we extended our time (now 4 hours, 3days on one off,  3 on one off) And he's right on to what "they" want to see and except for his dang hemoglobin, was feeling great.

[MooseMom]

Again, I'm going to suggest you read something from Dr. Agar over on Home Dialysis Central (I've been sending a lot of people over to that site today! 

http://forums.homedialysis.org/threads/2488-The-Good-Dialysis-Index 

He discusses Kt/v and why it is inadequate, and he suggests something that would be better.  Maybe this will help...

[jeannea]

Here's the problem. Even if you convince a doctor that kt/v isn't a good measurement, if that is what is being used to determine if they get paid or if they're a good center, what are they supposed to do about it? Unfortunately it may be important to help you get a good kt/v.

[sullidog]

sometimes I will have a KT/V within range and feel like crap

[boswife]

Yes, Jeannea is right.  Good or bad, that is something we have to accept about this is that we have to be in their range. It's their job to do this as well so it's one of those 'complient' type issues. 

[SteveK87]

Here's the problem. Even if you convince a doctor that kt/v isn't a good measurement, if that is what is being used to determine if they get paid or if they're a good center, what are they supposed to do about it? Unfortunately it may be important to help you get a good kt/v.

Good point.

And IMO, the range can be perfect and one can still feel like crap.  Although the paperwork might show that things are going well, there are so many other factors as to why someone would feel horrible even with good ranges.  You have to think about the prescription drugs, the diet, other health issues, maybe not enough sleep and even day to day life and stress in general not including the dialysis itself.  My wifes kt/v is almost always in the required range...but that doesn't change the fact that she sometimes runs out of breath walking up the stairs or sleeps for extended periods of time because she constantly feels tired .

[sullidog]

I'd still like to know why my local hospitals tend to look at the creatt to see if a person is getting enough dialysis, the other day I went to the er for something and they said your creatt is high make sure you go to your dialysis treatment tomorrow.
I agree doctors think since our KTV is normal we should not be feeling like crap, but the fact is, some of us still do so I agree it's not acurate

[Gerald Lively]

My understanding of Kt/V is that it is a measure of pumping efficiency through the machine.  It is not a measure of how well the machine cleans.

True/False?

[Whamo]

I'm glad you're feeling good.  That's the important thing!  And it's so true about someone wrote about not feeling good even though you're in the right range.  I felt anemic this morning, did some research, took some B supplements, and viola, I feel better.  I figured out the coffee I'd been drinking must have been draining the iron out of me.  It's  shame though, as I love my coffee.

[cattlekid]

I'm on for 2.5 hours (up from 2.25 grrr!!!) and on 20 L.  This is 5x per week.  They threatened a sixth day so I acquiesced to the extra time, even though I don't think I need it.  The nurse did say that if my Kt/V gets better (a dippy measurement!!), then I can go back to 2.25 hours.

Can i ask how long your on the machine?  Hubby Bo started w/17 Dialysate, up to 23, back down to 20 then 19 (but that was because my machine at the time was calculated a bit off and was going dry if we tried to go 20) and now back to 20.  I know everyones different but we were hoping to stay w/ the 20 and so we extended our time (now 4 hours, 3days on one off,  3 on one off) And he's right on to what "they" want to see and except for his dang hemoglobin, was feeling great.

[cattlekid]

Thanks MM!  This is exactly what I was looking for.  I knew I had read it somewhere before!  According to Dr. Agar's scale, I was doing fine with my current prescription.  I would add a few things to his calculation though: 

1.  If the patient wants to work, is the patient working, either part or full time?
2.  Is the patient able to participate in social/family activities as he/she would like to do?
3.  Is the patient able to participate in household activities (e.g., cleaning, cooking, laundry) as he/she would like to do?

These show that dialysis is just a part of your holistic life, not the only thing in your life. 

Again, I'm going to suggest you read something from Dr. Agar over on Home Dialysis Central (I've been sending a lot of people over to that site today! 

http://forums.homedialysis.org/threads/2488-The-Good-Dialysis-Index 

He discusses Kt/v and why it is inadequate, and he suggests something that would be better.  Maybe this will help...

[cattlekid]

I see your point, but I have a life to lead.  I am not living to do dialysis, I am doing dialysis to live.  Adding on more time is just cutting into my life for no reason other than to meet some artificial target that doesn't even scientifically hold water, especially for women.  I am not a number!!!

Yes, Jeannea is right.  Good or bad, that is something we have to accept about this is that we have to be in their range. It's their job to do this as well so it's one of those 'complient' type issues.

[cattlekid]

Sullidog, I know it makes no real sense, but I can agree with you.  I had an episode last week of chest pain, shortness of breath, dizziness, clamminess etc.  I went to the ER for this also.  Turns out my creatinine was at 11!  I had a four hour treatment in the hospital, then four more days in a row of short treatments at home and my creat. went back down to 6, which I think is the lowest it has been since I started dialysis.  I definitely feel better. 

I'd still like to know why my local hospitals tend to look at the creatt to see if a person is getting enough dialysis, the other day I went to the er for something and they said your creatt is high make sure you go to your dialysis treatment tomorrow.
I agree doctors think since our KTV is normal we should not be feeling like crap, but the fact is, some of us still do so I agree it's not acurate