PD, itch, cramp, fluctuating UF

Discussions for Patients, Family, and Friends PD For Patients
1

Hi Guys,

My Wife has Kidney disease, been on here good few times from time to time getting good answers to questions, thank you all.

She uses a home dialysis unit by Baxter which is set to a program. In general the dialysis involves 10 hours on the machine at night BUT a while back when she questioned this time length with the consultants and kidney specialists they came up with a variation of Tidal which meant less hours in a sense.

At the moment the program is set where - when home at teatime - she does a drain from the day and a fill, then she can disconnect from the machine for about 6 hours approx I think. She then goes on later for the 8 hours while sleeping. Then a drain and fill of 1.5 litres in the morning that stays their for the day - SO:

Up in morning after drain and fill 1.5 litres for the day, onto the machine around 7:30 in the evening, drain and fill again, dwell time until about 11pm - back on drain / fill and sleep ( drain / fill through the night ).

Every second night she uses different bag types -

One night these:
1 x small bag of Extraneal 2000ml marked Pink
2 x larger Bags of Dianeal ( Glucose ) 5000ml marked Yellow

Next Night these:
1 x small bag of Extraneal 2000ml marked Pink
2 x larger Bags of Dianeal ( Glucose ) 5000ml marked Green

Their is a pattern here now - her UF on the nights with the green bag is up around 1000, but the next night on yellow it can be around 200-400.

So the problems - main one - for about two months she has had an intense itch on her back mainly, now with spots ( acne ). As I said in another post we went to the consultant yesterday about all this. All her stats are generally fine - phosphates etc all low. SO he said basically he wasnt happy with the dialysis UF levels - too low, would like them to be all the time around 1000.

It turns out that on the first drain in the evening after the day, the later drain before sleep and the drain in the morning just before getting up she has great pain and has to stop / skip on the program. No pain during the night though - but I think this is because the program they gave her leaves some fluid behind in the cavity and fills again. The consultant said what seems to happen is the most concentrate of toxin fluid is left behind and hence the lower UF’s. The problem now is how if at all, one can get over the pain on end of drain to get all the toxins out.

I should now say the obvious - this is why the itch apparently. Out through the skin. He mentioned a word like urea, Im not sure. If she goes on more than one night of Green Bag and two yellow - major cramps.

She recently went for tests - does not have celiac disease, but may have irritable bowl.

The consultant is now going off to check the program and see about innovations and will be back. But he did mention that if in the medium term the UF cannot be brought up to around a regular 1000 then its back to the hospital dialysis 3 nights a week AND ( in my wifes case ) the dreaded fistula. She doesnt have a fistula - yet - but I can see I think from a womans point of view why one might dread this - looks wise.

Phew - long description - I am popping this up to see if others had similar, if anyone has thoughts around this one. She would love to sort home dialysis as the quality of life is good on it.

Cheers
Aidan

2

Hi Aidan,

Have you checked out the article that Dr. Bargmann wrote about the cycler PD prescription? I wonder if there might be some clues in there for your wife. It’s here: http://www.homedialysis.org/resources/tom/200805/.

I’m not sure about the itch on her back–is she maybe spending more time on her back because of the cycler? Does it change her sleeping position? That seems like an odd place for “spots” as you say, and perhaps a dermatologist should look at it. It may or may not be related to her PD.

Other folks here have had trouble with not getting good drains, and maybe they will weigh in. My question is, if your wife is doing so much better with the green Dianeal bags, why not just use that pattern every night instead of every other?

3

Hi Dori,

Thanks for that info - will look it up.

“My question is, if your wife is doing so much better with the green Dianeal bags, why not just use that pattern every night instead of every other?”

Simple answer to this one - if she goes more than one night on 2 x Yellow and 1 x Green - the dreaded cramps. Night two on the latter - she is waking up constantly with bad cramps. She would love to stay on 2 x Yellow and 1 x Green Dianeal bags, but the cramps the cramps!

Aidan

4

From my loooonnnngggg post above “He [ consultant ] mentioned a word like urea” Yippee its actually “uremia”

Aidan

5

Ohhh. That makes sense. If the doctor thinks your wife has uremia, it means she is not getting enough PD to clean the toxins from her blood. She might also have problems with fluid buildup. If you read that article I pointed you to, you’ll see that there are 3 ways to change the PD prescription:
– Adding more exchanges
– Using more fluid
– Changing the dwell time

If tweaking your wife’s PD prescription doesn’t do the trick, she may need to add HD (see the “Combined Therapy” thread that was just started) or switch to HD entirely. HD can also be done at home. Depending on where you are in the world (why am I thinking you might be in the UK?) some forms are more available than others.

6

Hi Dori,

Close but as they say No SeeeeGarrr :slight_smile:

We are here on the south coast of the Republic of Ireland, near Cork City,

Cheers
Aidan

7

Hi Aidan,

You just might be our first Irish folks! I think that calls for a personal visit, don’t you? :wink: Seriously, though, we have no idea what’s available (if anything) in the way of home HD in Ireland, so please feel free to share anything you know.