PD Woes

[Poppylicious]

So, following drainage problems and an operation to rectify the situation, Blokey is now trying PD again.  He's on the machine (Baxter) for eight hours a night and the last fill is Extraneal, so he does a manual as soon as he gets home from work.  He's been on for ten nights and has put on 7kg.  Is that normal?  His UF has been mostly in the negative, although once it was as high as 431! Yay!

The only time it worked well was on Sunday night when he decided to put four orange bags on the cycler.  He did this without authorisation from the unit, but in the morning his UF was 800.  He rang them yesterday morning and again this morning (he'd used up all the orange bags and his UF was -500 after a night on greens) and they're going to get back to him about whether or not he can try using orange bags all the time. 

He is really disappointed that the PD doesn't seem to be working for him the way he wants it to.  I just wonder what other people's experiences are.  I realise that everybody is different but surely his UF should be better than day after day of negative.  Is it just something that his body needs to acclimatise to?  I can really tell he's gained weight (but apparently the doctor on Friday said he was hiding it well).

He also seems to think that PD works for *everybody* else, so can't understand why it doesn't seem to want to work for him.  I'm assuming that it doesn't work for *everybody* though, otherwise *everybody* would be doing it!? 

Has anybody else been in the same boat? 

 

[paul.karen]

He shouldn't be having negative UF's.
That is defeating the purpose of taking toxins out of the body.

I generally get about 450/550 UF nightly.  Not sure why but the first two drains are usually negative??  I dint carry at all during the day so in the morning before i disconnect i stand and do a Manuel which generally takes out an additional 100 or so UF.  I think mostly it depends on how the hose is located and the position your in while draining.

Once or twice a week i will use green bags.  When i do this my UF goes up to about 1200/1500 which is good.  But if i do this more then once or twice a week i get bad cramps.

They make three strenghts for a reason.  It seems your husband needs a stronger strength to get a positive UF.  When ordering order more of the stronger bags.  I order the bags that work best for me.  My unit doesn't tell me which to use or not to use.

No i don't think you should have such weight gains in a short amount of time.  It seems he is holding the liquid which again is defeating the purpose.  Just play around until you find the bags that work best for him.  You can also mix bags.  to try and find a good match.
Good Luck

[Red from Canada]

Is a high sodium intake even a possibility???  There is so much hidden sodium in the foods and drinks that it could be part of the problem.  I use heparin nightly in my bags too, to ensure that the tubes aren't being obstructed.  If the red bags are the only solution, you may have to use them, but they wear out the peritoneum faster.
Good luck to you.

[peleroja]

Being in the US, I'm not sure which of your colors equal ours.  Our lowest is yellow (1.5), mid one is green (2.5), and highest is red (4.25).  Most folks here use the greens.  The yellows are usually used if you don't have a problem with fluid or have diarrhea.  The reds are seldom used, as they can pull off anywhere from 800 to 1400 ml overnight.  I'm also wondering why he's doing a midday exchange if he is using Extraneal.  Usually a midday exchange is only used with Dianeal.  Hope you can work everything out.  I love my PD!

[billybags]

Poppylicious. I know what you are going through, Alan's,  tube was not positioned correctly, it still isn't. He went on to PD after 3 months on manual. He has been back on it for 3 weeks. Some nights he has a neg UF others it could be around 400/600. He does a manual drain at tea time and that seems ok. His weight varies between 76-5 and 77-3. If it is up he uses 2 greens and 1 yellow and a last fill of extraneal. If his weight goes down from 76-5 he uses I green 2 yellows and an extraneal. His tea time manual is always a green. Green takes more fluid off. Check to make sure he is not constipated, hubby has to take 2 senna and lactose twice a day whether he needs it or not. Have a word with your nurse, she should be able to tell from your daily record log what is happening. We also find that having exercise like gardening, walking, doing some thing seems to help the drain. Tell him to stick it out, it will come good eventually.

[looneytunes]

Aw Poppy...tell Blokey that PD really does not work for everyone.  Hubby was on it for over 2 years.  Initially it worked well for him but after about a year, he started with the negative UF numbers, using 11,500 ml of greens per night with the final fill being a manual drain 4 hours after he got up in the morning.  Our nurse and neph didn't seem overly concerned even though the weight was packing on him.  Then after several months of negative numbers and high BP, they decided he was "third spacing" and we began using reds to pull off fluid even though his BP and pulse indicated he was dry.   

It was a tough 3 months for him last fall.  After his weight came back down to normal, his clearances were not good at all.  So, now we are doing NxStage at home.  So far so good. 

Our neph told us that because hubby is a stocky man (100 kg) that PD wasn't as effective as it would be for a smaller person.   

I sure hope things get better soon for Blokey (and therefore you).   

[lunadatura]

I think some of the troubles with whether or not PD works has to do with one's peritoneum membrane and how permeable it is. I seem to be pretty good absorber so I tend to have to use stronger fluids to get good filtration and fluid removal. What does the nurse and/or neph say about his membrane and what about his adequacy evaluation??

[Poppylicious]

Thanks for all your replies. 

He shouldn't be having negative UF's.
That is defeating the purpose of taking toxins out of the body.

When ordering order more of the stronger bags.  I order the bags that work best for me.  My unit doesn't tell me which to use or not to use.

One of the reasons the doctors aren't too worried is because he isn't showing signs of illness so they know that the bags are doing their job of removing most of the toxins.  I'm not sure we're allowed to just order in that way ... Blokey has to tell Baxter's what he has left and they go from there; anything else has to be authorised by the unit.

I use heparin nightly in my bags too, to ensure that the tubes aren't being obstructed.

Blokey was advised to add Heparin to his bags when he saw the doc yesterday.  When he came to set it all up he wasn't sure how to add it as although he had the Heparin he had no needles!  Hopefully he'll add it tonight.

Being in the US, I'm not sure which of your colors equal ours.  Our lowest is yellow (1.5), mid one is green (2.5), and highest is red (4.25).  Most folks here use the greens.  The yellows are usually used if you don't have a problem with fluid or have diarrhea.  The reds are seldom used, as they can pull off anywhere from 800 to 1400 ml overnight.  I'm also wondering why he's doing a midday exchange if he is using Extraneal.  Usually a midday exchange is only used with Dianeal.  Hope you can work everything out.  I love my PD!

I think the bags equate colourwise.  He's supposed to do four greens a night.  He doesn't do a midday exchange ... he does it at about six/six-thirty; his last fill in the morning is usually about seven (Extraneal needs ten hours to be effective, is that right?).

Check to make sure he is not constipated, hubby has to take 2 senna and lactose twice a day whether he needs it or not.

*chuckles* ... he's definitely not constipated!

Our neph told us that because hubby is a stocky man (100 kg) that PD wasn't as effective as it would be for a smaller person.   

Yep, Blokey is quite large too.  That probably is a factor.

What does the nurse and/or neph say about his membrane and what about his adequacy evaluation??

My first response to this was 'Eh?' and 'His what ... ?'  I am a bad wife!

 

Again, thanks for the replies; it's nice to get some ideas about it all.  I'm sure it will get sorted.

[Jie]

For PD supplies order, one can tell Baxter representative what inventory is and let her or him to decide what to order, or the patient tells the representative what to order.  Baxter has prescriptions that allow the items to be ordered for each patient. The patient can get anything within the prescriptions.  I always tell Baxter representative what I want, not what I still have. I feel that I know better what I need than the representative.

[lunadatura]

not a bad wife - a very caring caregiver - i wish i had me one!! - doing this all on my own - there is a very steep learning curve here - membranes and adequacy test etc!!