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David Pascoe
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« on: September 12, 2015, 08:09:44 PM »

On PD for more than 2-1/2 years and my UF results are erratic. They may be up around 1000 for several days in a row and suddenly drop off to the low 100's. I use the same % solution every time. Thing is, it gets really hard to control my fluid retention and my legs look like hell due to near constant edema. I also have a hard time controlling my drinking. Supposed to keep it down to 24 oz. but constant dry mouth from meds and hot weather make that a laughable number.

When I ask nurses and nephrologist, I always get the same stock answer: "everyone's different" and no one will tell me what I should expect. Are my erratic results normal? In fact, I think they are stonewalling me due to the high number of lawsuits they have over one of their dialysis solution products. They have the patent data from hundreds of PD patients via the machines flash disk, but they will not tell me what constitutes a reasonable average UF.

I think I deserve an answer but my dialysis professionals are mute.
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David Pascoe
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« Reply #1 on: September 14, 2015, 07:39:56 PM »

Interesting that after three days not a single reply to this post. Well, that just continues along with what I always get with these questions: SILENCE.
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Whamo
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« Reply #2 on: October 04, 2015, 12:11:34 PM »

Do you get the same UF using different color bags or do you use the same ones every night?  The best gauge you can go by is your own records.  Your nurse and doctor take the time to analyze them every month.  If you're concerned you should keep your own records over the long term so you can look back over time.
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jcanavera
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« Reply #3 on: October 28, 2015, 09:00:12 PM »

I know I adjust fluid bags based on weight, blood pressure, and Uf output. If we used the same color bags every night we'd be all over the place.  Even her overall health may make me change fluid strengths.  Right now we are using 6 liter bags.  Three green four times a week and two green and a red the other three nights.  Tonight we are using red green and yellow. 

Jack
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Charlie B53
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« Reply #4 on: November 03, 2015, 09:56:47 AM »



First question,  Are you wearing support hose to keep compression on your legs and thus help minimize and reduce swelling?

I do not wear mine daily, only one those days that I notice any swelling over the minimal I allow.  If very much I will even wear the socks during the night.  Between laying in bed AND the compression the combination seems to reduce the swelling more than just one or the other.

We are not using the same volume, number of exchanges and % solutions.

My last fill in the morning before I get off the machine fills me with Icodextrine which remains in all day until the very first drain when I connect in the evening.

You would have to talk to your Neph to find out if there is any advantage/disadvantage in this for you.

I am not near as large as I used to be, having lost 100 lbs since I started PD 2 1/2 years ago, but at 6 ft 210 lbs I still sweat quite easily.  Summer time I go through a LOT of water, but sweat a goodly amount of that off depending on both the weather, if I am inside or outside, and my level of activity.

It is quite conceivable for UF to vary a whole liter.  Between sweating, or not, activity, weather, and fluid intake.

Keeping track of both morning and evening weights is a very helpful indicator of what I have gained, or lost, during the day.  There have been many days that I actually lost weight.  Not a lot, but a couple tenths.

And it is not unlikely to see my weight vary as much as five lbs within a week.  As long as it 'floats' within a range, plus or minus 5 lbs I won't bother to get excited.

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David Pascoe
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« Reply #5 on: November 14, 2015, 03:42:20 AM »

Well, that was a very interesting reply, Charlie. +/- 5 lbs, WOW. I'm 5-11, 180 and go around -/+ 4 lbs. No, I quit the compression hose as I discovered that it just pushed the fluid from lower legs to thighs. This year, the edema damage to lower legs has greatly diminished for unk reasons and in the last month my cycler UF has increased dramatically, say around 40-50%. Also for unk reasons. I'm using the same % every night, a red on top, green below as two greens have never worked well for me, yellow not at all.

I don't sweat much and so can't take advantage of that. I also have five toes amputated + neuropathy, thus my mobility is slightly reduced. That said, my fluid intake is critical and shouldn't be more than 24 oz. day. Absurd. I can't control my drinking to that: with all the meds I take, dry mouth has me sipping constantly. Plus, I'd just as soon die as give up my evening drink(s) that run aroiund 20 oz. alone.

Bottom line, I've learned to live with ugly legs while living in Florida and wearing shorts all the time.

I do a mid-day and my first evening cycle is always highly negative; minus 500 UF is not unusual and this has always bothered me. Then cycles 2 & 3 go highly positive so that my net UF is usually close to 1,000 ml. or better. So, I added a late after noon exchange and that only helped marginally. I even had the machine replaced, to Noah Vail. A mystery no one has an answer to.
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