PD or not PD that is the question

[murf]

I have just moved to a new centre after the old one closed and I am not happy, Jane. The chairs are uncomfortable, I have to travel further, the TV doesn't work, I have to lug my pillows, sheets and blankets, the reception is sterile, no cup of tea/sandwich.... OK .. I'm whinging but hemo is hard at the best of times.
So, I have been considering PD (peritoneal). Could someone please give it to me straight. I want to know what are the disadvantages of PD. I think I know some of the advantages but if it is so great, why aren't we all on it?   

[KICKSTART]

Its not possible for everyone to be on it because of other medical issues , previous surgeries etc. and some people just dont want the responsibility. I did PD for nearly 5 yrs and i loved it ! Why am i not on it now ? because my peritoneum wore out, (it doesnt last forever!) Disadvantages are few , you need storage space for supplies , you do it every day, you have to do it 4 times a day manual  or stay hooked up for a minimum of 8 hours at night if on APD . But otherwise , you can do it in the luxury of your own home, you are in control , you can still travel, less restrictions on diet and fluid. Im now stuck on hemo but if given a chance i would go back to PD like a shot !

[billybags]

OK Murf. My husband was on CAPD and after 4 months on APD . He was doing great, 4 exchanges a day with the CAPD no problem, 7 hours a night and one manual with the APD, no problem.
CAPD:The boxes and tick tacky take a lot of room up and waiting in for deliveries is a pain in the butt, but it is only once a month.
APD MOre boxes. Getting rid of the cardboard for recycling is a pain but you find a way around this.
With both you have to be scrupulously clean, do not cut any corners. Disadvantages are: infections and peritonitis.
We went on holiday to Greece in July and after the first day my husband got an e-coli bug. Very serious, cut a long story short he had to have his tube out and go on emergency hemo, that was 3 months ago. he hates it and cannot wait to go back on to CAPD. He has had two operations cancelled because he was not well enough. Oct 16 keep your fingers crossed he is scheduled again and he can not wait. To him there is no comparison. He felt better on CAPD. He is lucky he still has the chance, alot of people on here haven't. The peritoneal does not last forever so eventually you end up on hemo.I would say go for it, Good luck which ever way you choose.

[Ken Shelmerdine]

just to add to the list. The wear and tear on the peritoneum depends on the strengh of fluid you have to carry.
The stronger the fluid the more wear and tear. There are a lot of advantages but these need to be ballanced against peritonitis episodes which although not usually frequent can in a minority of cases cause permanent bowel damage.

[mk]

I've also wondered why more patients are not on PD who might have been able to from a clinical perspective. I think many do not want the responsibility: you have to pay attention, no shortcuts, do it right everytime. They prefer to have someone look after it all: I preferred to look after myself and liked my independence. Also for some patients who may be isolated at home, there's a social aspect to hemo: it's just you and family at home (I saw that as an advantage). If you are on the cycler overnight, carrying the weight of the fluid during the day can be heavy and hard on your back. There's the risks mentioned before, but there are more risks of infection going to a centre than at home (if you keep clean, no shortcuts on technique, etc). The storage space needed is a pain but it made us get rid of stuff. I found the manual system with 4 exchanges a day difficult since it's hard to schedule your day.

FOR ME, I felt so fortunate that I could have PD at home and that I was on the overnight cycler after the first month and I didn't have to carry fluid during the day. Try it.

Cheers, Mary

[Jie]

I think one can ask the same question: since home HD is doing better than in center, why so few patients are doing home HD? It is just more difficult to do yourself than doing by others for you. Besides that, PD makes you look 6 or 7 months pregnancy. You may need a new set of pants. Your back may be pain, and your weight may go up through the roof. You may not sleep well with the solutions in your belly and with the noise from the machine during the night.  You know the advantages of PD, which outweight these shortages.

[monrein]

I chose hemo, did home hemo the first time (almost 5 years) and self-care clinic the second time (10 months).  Did everything myself.
I did not choose PD because I did not want the catheter in my belly.  I was only 26 the first time and I liked the fact that other than the time I was hooked up, I was free of tubes.  I did of course have the fistula but I felt intact.  Second time around I felt very comfortable with hemo so why not go back to it.  However, I did review the idea of PD and decided again, superficial I know but important to me personally, that I preferred the fistula to a catheter because of my sex life and not worrying about the catheter. 

One thing to remember is that you can try it and if it's not for you then you can switch to hemo and have the catheter out.

[murf]

Thanks everyone for the quick replies. One more question. Does it make a difference that I live alone? Do I need help setting up and can emergencies happen?

[KICKSTART]

For PD no , i live alone and did it for nearly 5 yrs , for Hemo at home possibly , im not allowed to do it , but it may vary in different countries ?

[Hanify]

Going to PD after having to do in centre haemo was like being given my life back.  I've never had any infections, and it's still working well after 1 3/4 years.  I hope to stay on PD as long as possible.  I have 9 hours on the cycler and no exchanges during the day because I use 'extraneal'.  When i have to change back to haemo I will do nightstage or whatever it's called.  You definitely can do PD on your own.  My nurse told me there were political issues in the States to do with how much money the big companies make with haemo.  I.e that in some ares it seems as if people are being pushed towards haemo because it earns them more.  I'd hate to think that was true.

[RightSide]

PD sounds attractive,
but I'm very afraid of infections.

It sounds like you have to keep your house (and especially your bathroom) as clean as a hospital in order to prevent infection.  I've never been that fastidious a housekeeper.  Plus, last year I already got a nasty urinary tract infection from intermittent catheterization.  It turned out to be a strain of Pseudomonas that probably lives in my city's tap water and resists chlorination.  So even our local tap water has bugs in it.

Suppose I try PD and I get peritonitis.  What can I expect?

[Stoday]

First make sure that PD is an option.

I spent a month finding out about PD/hemo issues and finally decided on PD. What a waste of time! No option, I can only have hemo. What a disappointment too!

Kickstart — a UK patient is permitted to have home hemo without a carer provided "the individual is able to manage on her own." See paragraph 7.3.2 of this guidance from the National Institute for Clinical Excellance: Click here

[Hanify]

peritonitis does sound awful.  I'm not particularly careful, but haven't had a problem.  Maybe I'm just lucky.  I have the cats in my room etc which you're not supposed to do, but it hasn't caused a problem.  Some people are as careful as anything and still get infections, some aren't and don't.  there's no rhyme or reason.  I think you shouldn't be put off by what ifs.  You can always change to hemo if you don't like PD.

[Stoday]

You must be lucky, Hanify. I read somewhere that the UK NHS target for peritonitis in PD patients is once in 18 moinths.

[paul.karen]

I think many people dont do PD because many nephs dont even bring it up.  They say you need a fistula so you can start dialysis, and as a patient you go along with what your doctor says a majority of time.
I had no idea what PD was until i found this website. And im glad i found it.

Rightside your house doesnt need to be sterile so to say.  The easiest time to catch Peritonitis is during hookup which takes about 5 seconds.  Also when hooking up your bags.  Again this is done pretty fast.  And generally the machine is in a bedroom.  Once your hooked up your pretty much good to go and shouldn't have to worry about infection.

it takes me about 5 minutes to get two (6 ltr) bags and the cassette ready for hookup.  What takes the most time is for the machine to prime itself.  Once it is primed you hook yourself up which takes seconds.  Just have clean hands and your mask on.

[peleroja]

Many patients don't do PD because nephs have vested interests in hemo clinics and don't bother mentioning it.  My first neph was setting me up for my fistula surgery when I told him I was going to do PD.  He seemed shocked that I had even heard about it! 

As for peritonitis, it apparently hits people differently.  Someone on this board once mentioned that it had been "excruciating" for them.  When I had mine, which was the worst possible kind (pseudomonas), to me it felt like gas, and I kept asking the nurse for syimethicone!  Maybe it all has to do with how well you tolerate pain.  Bottom line, though, is just to keep your wits about you.  I know I do many things wrong.  I leave my windows or doors open, I run my ceiling fans, I seldom clean my house; yet, I never got peritonitis from lack of cleanliness.  Mine happened because of a ruptured abdominal hernia which then infected my peritoneal fluid.  As I have told the doctors, there is optimum and adequate; I am doing adequate.

[KICKSTART]

First make sure that PD is an option.

I spent a month finding out about PD/hemo issues and finally decided on PD. What a waste of time! No option, I can only have hemo. What a disappointment too!

Kickstart — a UK patient is permitted to have home hemo without a carer provided "the individual is able to manage on her own." See paragraph 7.3.2 of this guidance from the National Institute for Clinical Excellance: Click here

Really ? interesting as at the unit they have told me .no way would i be allowed to it and im more than capable believe me !!!!
By the way i did nearly 5 yrs on PD and never had peritonitis!!!!

[zazenboy]

Pros: Easy to learn, must always use clean best practices.  You can dialyze anywhere in the house that's near a drain.
Cons: Make sure you have a good surgeon that understands how delicate the peritoneum is.  Mine just merely placed the catheter low, and the exit site was loose and sloppy, never closed up tight like the pictures showed. 
Worse con: Peritonitis: They never tell you when you get this that its not painful, and stabbing bags of dialysate for 21 days with three different antibiotics that you have to mix yourself is a pain.  If it's walled off like my abscesses were say goodbye to PD, the pain on a scale of 1 to 10 was like 12 or 13, especially when your PD nurse tries to flush the catheter.  Ouch! Ultimately I spent 4 weeks in the hospital to resolve these abscesses. I went on Hemo and haven't looked back since.  My nephrologist kept try to convince me to go back to PD, but all I could see was those fat ankles I would get every afternoon, and I was taking off 3-4 liters a night.    Not sure why HD has been better for me physically. And one last thing, if you do PD your drain or sink should be right next door, Baxter's extensions weren't long enough, and I had a dialysate flood every other day.  Used dialysate on carpet smells worse than cat pee...  Just so you know.  Don't mean to scare you, as each person's exp is different, but I hated the inconvenience.

[Hanify]

I use the cycler but don't drain to my bathroom.  I have a big drain bag that gets emptied and disposed of each day.  I've never had a problem with flooding.  You do have lots of rubbish.  Be prepared for that.  I'm gonna be like Kickstart and have no infections for 5 years.  So there.  Think positive.

[dwcrawford]

Hanify gets a royalty every time some one switches to pd or choose pd.  And then she get a bonus if you buy  a spa from her......

[Hanify]

Dammit, I knew someone would discover my evil plan....