Thinking about pd dialysis

[dyannalw]

Hi, I'm thinking about switching to pd dialysis. I am on in clinic hemo dialysis right now. I joined ihatedialysis.com about 4 years ago and have been on dialysis about 3 and a half years now. I don't come here as much as I would like to but I was hoping to get some advice. I hate going to the clinic. How much space do I need to have and how does it work? How often do you have to dialyse for? Can you dialys at home if you have pets? Any and all information would be a help to me. Thank you.

[MaryD]

I can thoroughly recommend PD.  I'm on CAPD, which means that I'm not using a PD dialysis machine.  I don't like machines much, but there are oodles of people using them and you will get better advice about machine PD from them.

I have two cats and have never had any problems with them.  They don't leap up on things or bother with my tubing if they come across it.  Storage space is one of the drawbacks for PD.  Every month I get a pile of heavy boxes delivered and stacked.  The pile is about 5' high and 5' wide.  It all lives in my spare bedroom.  The other drawback is the risk of infection.  Your training procedure has to be followed precisely - everything in you hookup area must be CLEAN, CLEAN, CLEAN.  I use a section of my kitchenbench.  You will have to dialyses daily.  For CAPD each exchange takes 30 - 40 minutes.  The only "lost time" is the 5 minutes it takes to hook up.  Then I check my emails, read the paper, knit, practise the piano, watch TV or whatever.  One of the other IHD members does the dishes while exchanging.  I'm too clumsy for that - I can fall over my own feet.

You need to have a peritoneum which is in good nick, ie not too many operations.  I have had a Cesarean, and a small bowel resection and they didn't have any problem with me.

I'm sure you will get more information from people doing APD.  Usually you start doing CAPD and then transfer to APD.

[M3Riddler]

Hi, I'm thinking about switching to pd dialysis. I am on in clinic hemo dialysis right now. I joined ihatedialysis.com about 4 years ago and have been on dialysis about 3 and a half years now. I don't come here as much as I would like to but I was hoping to get some advice. I hate going to the clinic. How much space do I need to have and how does it work? How often do you have to dialyse for? Can you dialys at home if you have pets? Any and all information would be a help to me. Thank you.

Dyann,
Have you ever considered home hemo?  Just take what you know now and expand it and take it home with you. You can be on your own schedule as well as get a better treatment.  Yo do need some space for the supplies, but I have not found anyone that has not somehow made it work. People that live in trailers are able to perform home hemo. All it takes is didication and a will to do it.  You would be properly trained before they would let you go home, so I would not worry about that part. No one is going to take as good of care as you as yourself or a care partner.

If not home hemo, then PD would also be an option. You will also approx the same amount of space.  Your nephrology team should have informed you about the different options, even if they do not offer them. It is their legal duty to explain the pros and cons of each.

 I have done both, so if you have any questions, feel free to answer.

[geoffcamp]

There are many pros and cons to this decision and everyone is differant. Some love it and see no other way some can't stand it!!  I personally have done both (well all 3). regular PD, over night PD with a cycler machine and hemodialysis. I am fairly young and was very young when I tried PD. It simply did not work for my life style. I could not be home early enough every night to make the 10 hours they wanted me on the cycler every night. So I was stuck on the machine until late everyday and it led to not being as compliant as I wanted to be. Plus the additional work of ordering supplies setting everything up myself and keeping the records felt like more than a full time job at a time I wanted to work and do things with friends and family. I was petrified of hemo dialysis but when my transplant fail I was told my option was hemo only (I've since heard that is not true here) so I got a cath started hemo then a fistula and for me the ability to walk in do nothing and get your treatments totaling 12 hours a week for me. 3 hours MWF evenings from 5-10pm was great to me. I didn't even think about dialysis until it was time to go and on my shift I sleep some then come home and sleep off effects of dialysis and wake up good to go for the day!!  So for me hemo in center has been great. BUT the more dialysis you do the easier it is on your body and the better you feel. So on long weekends from Friday night to Monday night that Sunday evening and Monday during the day can be rough if your not perfect with diet over the weekend!!!  So I too am looking into home hemo. I'm not keen on all the additional work I will face (I have a staff at my center that does everything for me now, I just come in and they hook me up!) and the storage of materials needed as I have a small condo but the trade off to be able to get dialysis on my schedule and more if I think I need it has me looking into a NxStage home hemo set up. So that's my story do your research talk to as many people who love the way they do it and list pros and cons to decide what path is best for you. Remember you can always change if at first you don't succeed!!  Good luck and I'm sure that other will share with you the way that works for them. There is a ton of real life experience on this board so you came to the right place to get the info needed to choice wisely. G.

[Whamo]

I was on hemo for a year, and that was long enough.  I switched to PD.  My PD nurse says pets are okay, but you can't let them in your treatment room.  Others have told me they quit PD because they got infections because of a dog.  For me the hard part of PD is the drain and/or cramps waking me up in the middle of the night, or, even worse, I can't get to sleep.  I also have trouble keeping the fluid off, even with using red bags.  I get too thirsty.  It's always a struggle with sodium, fluids, and the renal diet.  I was doing really well on hemo when I switched, and I almost didn't want to go through with it.  I have mixed emotions about my decision. 

[dyannalw]

I appreciate all the replies. The room I would be doing it in the animals don't go into so that's not a problem. I am not thinking home hemo as there is no way I could canualate myself and I don't have anyone who is willing to do that for me. My son will help me with pd but not if he has to stick me with needles. LOL I really don't know what to do. I hate going into the clinic and I have been cramping so much lately I thought maybe pd might be a good alternative but I guess you cramp with that also. I hate having to deal with the staff all the time. They act like I'm making it up when I cramp and seem to get mad about it. I'm not interested in a transplant because there just are not enough guarantees. I really don't' know what to do.

[geoffcamp]

About the attitude of your staff if I were you I would request a meeting with the center administrator and let your voice be heard. Keep it civil and professional but make her understand how you feel and figure out a solution. Get it in writing and document all the instances of when the staff is not giving you the care or respect you deserve. I have had to do this 2 or 3 times over last 11 years of being on in center dialysis. Make sure they know this is about YOUR life and you expect the best treatment you can get. I have had good luck with this approach, sometimes they need to be reminded that you are a person trying your best and you deserve care and respect. Good luck. G.

[Joe]

Believe me, you can cramp on PD also. Other than that, I think it's a pretty benign way to do dialysis. I don't have a problem with the dogs, and typically keep them out of the area when I'm connecting and disconnecting. Other than that, they pretty much have free reign of the house. So far, I've not had a problem (knock on wood). I do wash thoroughly every time I'm going to touch my catheter and am just about anal with doing exit site cleaning any time I get my catheter wet. My team is happy with my exit site, so I guess I'm doing ok.


Good luck!

[dyannalw]

I really should come in here more often. There really is great support and it really helped to just vent a little bit. Thank you so much for being here.

[Leanne]

PD was a nightmare for me.  The tube rubbed inside making an abscess and I had major issues getting all the fluid to drain.  I had issues for over a year after the tube was removed.  Im not trying to discourage you, but you should hear both bad and good before deciding.  Another advice?  Clean! Clean! Clean!  The rules are no joke.  Be so very careful and good luck with whatever you decide.

[blondie1746]

Dyanna, I have been on PD for 15 months now.  Started off with manual PD and switched to the cycler at night.  The machine is not difficult to use.  Everyone's time varies, but I am on the cycler for 8 hours.  If I have to get up early, I hook up early.  Then watch TV in bed, or go to sleep early.  I work from home, so I usually don't have a set time that I have to be up.  I prefer the night cycler because I don't have to watch the clock during the day to do my exchanges approx. every 4 hrs.  I have 2 dogs.  At first, I always closed my door while doing my exchanges.  Now, I just make sure that I'm clean, my area is clean, and the dogs are not sitting right on top of me while I hook up to the machine.  Haven't had infection yet, keeping my fingers crossed!

There are a lot of boxes to store.  I keep them in my son's room (he's away at college). They sit on 1 wall, not really too bad.  I can't imgaine having to go to a center 3 times a week for 4 or more hours.  I feel like the cycler gives me the most freedom and flexibility.  I even travel with it.  Sometimes I have "drain pain."  But if I keep myself "regular" (if you know what I mean) then it doesn't happen anymore.  I do get cramps or charlie horses in my feet at night. Not all the time, but Dr. says that happens alot with dialysis patients, doing hemo or PD.  But I also get those same cramps during the day, so I don't think the PD is the direct cause.  Don't let that deter you. 

After seeing the good, the bad and the ugly of fistulas, I prefer my catheter to that.  You get used to that as well.  It's just a part of me, just like my arms or legs!  Good luck with making your decision!

[Joe]

I keep a six pack of tonic water in the house for those days when I have bad cramping, usually in my feet and calves. There is a little bit of quinine in the mix that helps with the cramps. I don't have a problem often, but when I do it can be very painful until I get the tonic water drunk.

[geoffcamp]

Here's a tip on cramping from playing football in the southern heat!!  Sip just a little pickle juice and they go away FAST!!  At least it has always worked for me!!

[WishIKnew]

pickle juice or chicken broth are great tips to stop cramping.

I did PD for almost 4 years and really liked it.  At first it was a little overwhelming, like I was getting a crash course in nursing, but very quickly we all settled into the routine and it really became as easy as brushing my teeth.  Quickly i learned what I needed to do to make adjustments if I was pulling off to much fluid or not enough.  I did the cycler at night. We have a dog and three cats.  I never changed the cat litter, but other than that no pet adjustments.   The cycler sat on my night table.  We stored the supplies in the closet.  I traveled a little and life was very normal.  I did get an infection once early on.  I was stupid and swam in a friend's pool while her dog swam, too.  Duh, germs all over.  A only swam in public pools because their chemicals are checked often.

I wish you the best.  Whatever you choose, give it a month or to get comfortable.

[Wat76]

I guess I can offer some advice now that I have been doing PD for 2 months and so far so good.  I was so worried about doing PD because of the infection.  I have been on PD for 2 months now and I love it.  I am doing manuals for the moment and will start training on the cycler next week.  I have been on vacation and it was so easy to pack and go.  Love the freedom it gives me.  What I hate about it is watching the clock to do a manual within the 4 - 6 hours time period.  I had my first labs and testing to see how i am doing and my numbers were great.  So, it is truly a choice you have to make after seeing what your options are.  By the way, I read through all 12 pages of the post in the CAPD section of this forum and learn a great deal about PD.  A lot of questions that I had was found in those discussions.  When you have time go and read through some of those before making your decision.

[Whamo]

I think PD is the best way to go, but the transition may be difficult.  Don't hesitate to call Baxter for help if you get machine alarms.  They're very helpful.  Keep a close eye on your log of blood pressure and weight.  Follow the procedures to the letter.  Double check.  It's easy to forget to do a clamp, or forget to release one.  Keep your PD nurse, and call nurse, phone numbers, and a phone, right there where you can use it.  Wipe down your machine and work area everyday, at least once.  Always wash your hands for 20 seconds, and let the anti-bacteria spray dry before you use your hands.  Never forget to wear your mask.  Keep an eye on your inventory of bags and supplies.  You never want to run out early. 

[MaryD]

We were told to wash our hands with antibacterial stuff for 1 minute before getting our supplies in place and work place cleaned.  Then a three minute hand wash with antibacterial again, followed by hand sanitiser after opening the bag, and more sanitiser before hook up.  I don't know whether that is the norm for Australia.  I understand that our PD clinic did have the lowest number of infections per patient hours in the country at the end of last year  (in spite of me)

[tito]

I've been on PD for three and a half years. I initially followed all the recommendations to the letter. I still make sure to use hand sanitizer before hooking up the bags and before hooking up to the machine. I do PD in my bedroom, and if the dogs are in the room, I cover them with a blanket. They like that. I always use my mask and shut the window or turn off the fan. I wipe down the machine probably every other day. When I am in my condo in México doing manuals, I make sure I shut the fans off.

What I am saying is that I am careful where it matters, but I have dispensed with some of the obsessive hand washing and other protocols, keeping the common sense ones in place. I have yet to have an infection. I think the PD clinic goes overboard, hoping you will follow 75% of what they teach you. My recommendation: be careful, but don't obsess.

[Grumpy-1]

MaryD said it all.  I was on PD for 3 years - then had a bout of infections and the PD access tube had to be removed.  I plan on going back to PD just as soon as I heal up and can get another access tube put in.   PD for me allows me to be more active (ie traveling)  HOWEVER - You MUST keep your PD area clean.  And always keep your site clean too. 

Grumpy

[MaryD]

My recommendation: be careful, but don't obsess.

Having had peritonitis (recurring) three times in my first year, even while obsessing, I'm inclined to continue to obsess.  I no longer think it is going to protect me though.

[AnnieB]

I've been off the site for awhile, due to being in process of moving (long story) but I am now thinking about PD instead of in center nocturnal. It seems to offer more flexibility and less restrictions. And did I mention I hate needles?

Anne

[JLM]

The only time I was on Hemo was during a 3 week stay in an extended care unir after hernia surgery, I pray I can do PD until I die......  In those 3 weeks, I thought "they" were out to kill me.   I even said that to my Neph during my first doctor visit after getting out of the hospital.  He looked so shocked!

[blondie1746]

The only time I was on Hemo was during a 3 week stay in an extended care unir after hernia surgery, I pray I can do PD until I die......  In those 3 weeks, I thought "they" were out to kill me.   I even said that to my Neph during my first doctor visit after getting out of the hospital.  He looked so shocked!

I completely agree!  Only time I have done hemo was during 19-day hospital stay for stem cell transplant.  I never dreaded anything more than the days I had to do hemo.  Told my husband I hope I can do hemo forever, as well!

[Joe]

I'm with tito, I'm attentive but don't obsess. So far I haven't had any problems with exit site or peritoneum.

[Simon Dog]

If PD works for you without complication it will improve you life over hemo.

I was on PD for 7 months, got HUGE ultrafiltraion with the 1.5% bags, but once residual dropped (unexpectedly, the neph never saw it happen that quick on a PD patient) I was getting inadequate KT/v as high ultrafiltraion is correlated with low transport rate and I had to switch to HD     HD is working great - decent clearances, I no longer have to open the car door at a stoplight to puke, etc. but the PD protocol was much less of an impact on my life.

And, if PD does not work well for you, the cath comes out and you get a tiny scar - it's not like a fistula that is always with you in one form (working) or another (remnants of a failed one).