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Author Topic: Repeating the Question  (Read 3448 times)
David Pascoe
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« on: September 21, 2015, 10:44:21 PM »

In my post "Erratic UF Results" I was asking for people's experience with their cyclers and their UF results. Everyone who uses a cycler, regardless of brand, has this experience. And yet in two weeks no one responded to this post with an answer. This is what happens to me regardless of who or where I ask this question.

When I ask the professionals, they just say "Everyone's different." THAT is a disingenuous answer and I resent it.

Of course, I know why Fresenius people won't answer. They're up to their eyeballs in lawsuits over a a dialysate issue, so they've obviously instructed their staff "mums the word."

What can I conclude from this? That it is a taboo subject?

That no one knows what UF means?

Just yesterday my Liberty 0 cycle or first cycle UF was MINUS 856. That scares the hell out of me. Where did nearly one liter of fluid go? All reabsorbed by my system? If so, something is seriously wrong and yet no one will indicate it as such. This not only scares me, I'm starting to get very angry over this issue and I'm about to stop being a nice guy and become confrontational with my clinic staff. I'm trying to avoid burning bridges here by getting answers elsewhere, but failing at that too.

We can set our machines to count or not count the 0 cycle in the total UF result. If set to NOT counta, one can have results like mine and still have the total result look respectable. Yesterday's result looked like this:
Cycle 0: -446
Cycle 1: +388
Cycle 2: +420
Total:    +808

I take 808 to be a respectable and good result. But it doesn't count the 0 cycle, which is wrong not to count because it IS a cycle and should be counted, not ignored. It is, of course, different than the others owing to the dwell time being at least twice as long, running from the mid day exchange 'till early evening. Yet the difference between this and the other cycles is more than double in the case of my -856 result.

All I am asking is whether others get similar results, OR NOT. Is a minus 400 result in cycle 0 normal?
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cassandra
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« Reply #1 on: September 22, 2015, 12:50:15 AM »

Dear David P, I'm sorry I can't help you with your ,by now, desperate sounding question, as my PD years are too long ago for this one.
But from your letter I understand that you put the machine to NOT count the 0 cycle, so it won't.

Love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Jean
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« Reply #2 on: September 22, 2015, 02:11:17 PM »

I would be happy to help with the question if I had any idea what it was. Not even on D yet, so, sorry, I dont know. However I do appreciate your frustration and sympathize. Hopefully, some one can help.
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One day at a time, thats all I can do.
grannyM
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« Reply #3 on: September 22, 2015, 03:05:06 PM »

I do not feel knowledgeable enough to advise anyone else so I seldom post.  I have done PD for almost 4 years, and use the Baxter cycler. I do not know about not counting the first drain and a few other things you do with your cycler.  I have learned everyone is different. With that I will tell you what I do and this is not advise, or that I am right.. just what I do.  I adjust my dialysis with the strength of the bags I use.  I have yellow 1.5% and green 2.5%.  I do two 6lt bags on the cycler at night and two manual bags 2lt each during the day.  I adjust the bags by what I know I have eaten and drank. The more off the chart I have been I use green, if I have been good I use yellow.  This keep fluid down.  Mostly I do a green and a yellow on the cycler and start the day with a yellow manual and second bag is green.  (I have done a third  manual bag when I know I have too much fluid. I don't chart it I just want to keep my  numbers in range. This is not something I do a lot.) I check my ankles,  hands, face for swelling throughout the day. I average 500 UF between the two day bags.
 Now the UF...my understanding from my nurse is this. The body toxins are in the extra fluid above the fill amount (the UF) So if I fill with 2000 I need 2000 out plus the UF of say 200 and I would chart fill-2000; out-2200 she sees the UF then is 200.  Sometime I absorb the manual and I only drain 1900 so the UF is -100. The longer fluid is in the more I reabsorb. So something came up and I did not get to the cycler on my regular time,( I like 7 or 8 pm) and I am late getting home so now it is 11pm and I had done a 1pm manual bag I will have a drain of maybe 1600 so I reabsorb 400 plus any extra I normally have.  Never lost 800 that would not be good in my thinking.  But I will show a larger UF from the cycler so I assume the cycler bags pulled off what I reabsorbed.  Hope I am making some sense to the reader. 
NOW, the cycler. The UF is ultra filtration,  I have an initial drain usually for me it is 1900 and first UF a negative. I do 4 cycles; each cycle will show a different UF. Yes I get a negative UF  but at  "End of Therapy"  I chart only the last UF on the cycler and this is my last few days, ending UF this morning was 663, yesterday 474, then 721 and before that 439.  I seldom have more than 700 never had 900 or 1000 UF.  Again I do not drink gallons, I half watch what I eat, (watermelon was my downfall lots of fluid so I did a third day bag that day)  I do know it changes by how much exercise I have done and worked up a sweat, and just moving around in general. It changes by how much fluid I put out naturally.  I never worry the UF.  In the beginning the nurse had me crazy with all the numbers and I was spoken to like a naughty child.  So I had a hissyfit with her and now I just turn in my charts, life is what it is.  I got sick of how I FAILED in my labs... and said well I don't turn purple when the things swing up.. until labs tell me,,, I usually know what I ate and watch it the next month.  I am old enough I am not looking at 20 30 years doing this, I am active, do all I want to do, rest when I want, and make a point to ignore dialysis as much as I can.  I like that I can set my times for dialysis, I am home anyway.  For me I go by how I physically feel; which is mostly good.  I don't know if this helped or answered your questions.  I do think half of this is a guessing game, the first three years was a wild ride but things are smoothed out for me, physically and emotionally.  I wish you well with PD.  I may get brave and post again.
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Bill Peckham
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« Reply #4 on: September 22, 2015, 05:18:36 PM »

I'd ask PD questions on the Home Dialysis Central facebook page


It is a closed group but Dori is quick to approve people
https://www.facebook.com/groups/HomeDialysisCentral/
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
David Pascoe
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« Reply #5 on: September 24, 2015, 02:01:12 AM »

granny M: Your reply was extremely helpful and I greatly appreciate it. That is all I've been asking is for other people's experience, not advice.

UF or ultra filtration is the amount of excess fluid removal over and above the amount of fluid put in. I think its normal to get negative numbers on that first cycle owing to a longer dwell time after our last manual. I only do a single manual, around noon, so its 7-8 hour dwell vs. the three hours for cycler dwells (my total time is just shy of 8 hours).

Oddly enough, if I do a manual at 8PM instead of using the cycler, I won't get those high negative numbers. Tonight, for example, my UF was 000 using manual at 11PM, a dwell time of 10 hours.

I have a terrible time controlling my drinking, my legs are usually swollen with edema, so I regard the UF issue more critically. I also use red 4.25% a little too frequently. Yesterday my cycler UF was a very high 1356 (prolly the highest ever) with a manual of 300. I have a constant problem with dry mouth, caused by meds I take, so there is a constant urge to drink; plus I live in Florida where the heat and sweating doesn't help.

UF is a zero-sum game, you might say, as the math is irrefutable. What goes in, stays in, if it doesn't come out as UF or urine or sweat. What we drink has to come one way or another or it will eventually kill us. My problem is, how can I manage my UF if I don't know what to reasonably expect it to be. My high result yesterday will very likely change to very low results in a few days, so I can't rely on such numbers. I was told my max. fluid intake should not exceed 24 oz. but I find that near impossible to maintain. I'm usually successful at around 32 oz which translates to 960 ml. daily fluid removal.
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Tío Riñon
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« Reply #6 on: October 03, 2015, 05:14:25 AM »

Greetings.  Here's my two cents on the cycler and UF based on my experience with Baxter's system.  The Initial Drain (I-drain) is the amount of fluid removed at the start of the cycler process to determine your starting point.  The amount should be whatever was last in your belly plus any additional fluid.  For example, because I was prone to absorbing my solution during the day, my nephrologist switched me to Extraneal which avoids that problem in most cases.  I carry around about 2400 during the day.  My I-drain is usually 2400 + whatever fluid is in my system.  My range can be from 2200 to 2700/2800.  If I've had a dryer day with little fluid (or probably I'm dehydrated), the value may be below what I put in.

Once that stage is done, I go through 7 cycles overnight.  Since I am a big guy, I use 3 bags of green (2.5) and 1 yellow (1.5).  I am filled with 3000, dwell, and drain again.  Depending upon my position in bed, I may go negative if the machine doesn't get a good drain.  My UF will be below 3000 which results in a negative UF.  When I'm in a good position, the UF is 3000 + whatever fluid comes off.  This has ranged from 30XX to 4100.  I can view my various UF cycle results throughout the process.  Some are negative, some are positive.  Hopefully by the end of the process, I have a good total drain.  However, this too varies from 1250 to 1800.  At the end of the process, I have a last fill which puts the Extraneal in me for the day.

Sometimes I get cramping due to low fluid in my system.  The process has pulled off all of the fluid and is trying for more which isn't there.  Usually I have to switch the bag combination for a day or two (2-3 yellow and 1-2 green).  Then I can return to my usual prescription. 

I also do manual greens periodically...mostly prior to measuring my adequacy, but also if I haven't been getting a good total UF for a few days.  When that is done, my I-drain tends to be higher when I switch to the cycler later.  Just this month I got 3300 for the value after a 2500 manual bag.

As has been mentioned, everyone is different and there are many factors in play.  I normally watch for between 1800-2000 for a final total.  I don't sweat a lower value for a day or so, but if it continues, then I consult with my medical team.

Hope this has been informative.   Good luck with your PD!
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jcanavera
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« Reply #7 on: October 28, 2015, 09:11:53 PM »

Depending on your therapy type looking at Uf numbers on a each cycle can drive you nuts.  My wife is on tidal therapy so her only complete drains are her initial drain and final drain.  The Uf number that really counts using her Baxter cycler Is the final Uf number which come from the final drain.  That's the one we track along with weight, blood pressure, and weight.  Over time I've learned to keep her within a 3 lb weight range, unless she is sick.  We get more fluctuation during periods of illness.
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Charlie B53
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« Reply #8 on: December 08, 2015, 05:42:24 AM »


My Baxter Cycler reports the Initial Drain seperately from the exchanges.  That initial drain can vary greatly depending on my position.  If I am vertical, I will drain completely and it will be a positive UF   but the machine ONLY reports the drain volume.  "I" have to figure the UF.  If I am tired and go to bed early during that initial drain, that drain will be far less, a 'negative' UF so to say.  However when this happens my TOTAL UF during the night is much higher as it is then recording a portion of that 'incomplete' initial drain as uf as it drains during the night.

So I wouldn't put a lot of concern on that initial drain volume.

You ARE checking your weight morning and night, right?

Are you seeing a higher weight AFTER a session?  This would be a sure sign of a negative UF.  If you are not seeing it on the scale I would worry about it much at all.  Just one of those curiosities of the body.
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