PD Ettiquete

[Wat76]

Hello CAPD/CCPD Users,

2 questions? Do you follow all the steps that were shown to you in your PD training? I was told to clean my transport before and after treatment. I was told to change my dressing every day among other things.  2nd question - What and how do you do your daily routine? Honest answers to my questions please.  Oh one more questions, Have you had any major issues other than peritonitis? I have heard that there are several risk factors with PD besides infection and just want to know have anyone had any other issues associated with doing PD.  Some things that I have notice is I stay constipated, pain in left and right shoulders, acid reflux is bad and cramping at times.  I am concerned about the long term effects of PD.

 Thanks

[Leanne]

I dont do pd now but...my tube rubbed inside and made a canteloupe size abscess.  My tube stopped up twice with protein too and had to be unstopped surgically.  Did not do well for me at all.  Constipation might give you issues with draining your fluid.  It did for me.  I had to stay basically empty.  Its very important that you are super careful and clean and do things the rightway.  I did everything exactly as I was taught.  My nurse stressed that and stressed that.  Mira lax is what I used to keep "regular".  My nurse told me to crap like a man.  I think she meant to go alot and often so no chance of constipation.  My tummy neverfelt good with pd but others do fine.  I do know that fluid going in too warm or too cold will cramp you.  I found that out thehard way.  Draining too fast also hurt me.  Hope I helpedsome.

[MaryD]

I do CAPD.  I follow my instructions exactly as I was told.  That did not stop me from getting peritonitis, so now I don't feel that following my detailed instructions are necessarily going to protect me.

Routine - antibacterial wash on exit site at the end of my daily shower.  Pat dry with clean hand towel.  For the first five days in the month I apply ointment (Bactroban) to exit site under dressing.  Otherwise just a dry dressing.  I have always had practically perfect exit sites.  I have never changed my shower rose.  We have treated town water and that is apparently regarded as quite safe.  I wear a Stickman belt.

Preparation for an exchange includes a 1 minute antibacterial hand wash (hands dried on paper towels) before 'sterilising' work top and collecting all my gear. Then a 3 minute antibacterial hand wash (I have heard a whisper that the WHO has decided that the 3 minute wash is no better than the 1 minute wash so my only divergence from the 3 minute wash is when I can't remember how long I've been washing, but I know it's well over 1 minute).  The long hand wash is when I gaze out the kitchen window and mentally plan my planting for next years vegie patch.  Slash bag open without touching inner bag.  Antibacterial hand gel, lift inside bag onto 'sterile' surface without touching outer bag, check for leaks.  Antibacterial hand gel, open connector on bag, open connector on catheter and connect.  All this is done with windows and doors shut and air-conditioning off.  Disconnect - bags on floor, and clamp frangible line.  Antibacterial hand gel, open minicap, more antibacterial hand gel, disconnect from catheter and finish off with minicap.  No talking while catheter is open.  Also towels, outer bag, old minicap etc are just dropped onto floor to prevent cross contamination.  This was the hardest part to 'learn'.  I couldn't bring myself to just drop everything onto the floor.

I have cats and the house is always scattered with books and textile crafts, and I'm still unpacking from two years ago, so the house is rarely in a pristine state.  The only time I got peritonitis the bug was an upper respiratory tract bug - I must have breathed at the wrong time.

There are side effects and dangers with PD, but there are side effects and dangers with HD, too.  Ditto with practically every medication we take.  We are basically on borrowed time - on life support.

I do like PD at the moment because it gives me quite a bit of freedom.  I live alone and have peripheral neuropathy problems so home HD would be very tricky for me.

[Emerson Burick]

Do you follow all the steps that were shown to you in your PD training? I was told to clean my transport before and after treatment. I was told to change my dressing every day among other things.

I don't. I take a shower every day and, like I have for decades, I simply shampoo my head and rub the stuff all over, including my site, and that's all I do. (There's hair everywhere so shampoo seems sufficient to me.) I don't use a dressing, either. I spent the first couple of months fussing with dressings and things to hold my tube, and I got sick of my stomach hair being ripped out and coated with adhesive crud for no apparent reason. Now I just tape the end of the cath under my armpit every day. I've been doing this for three years. Maybe once a year the site gets a little oozy and I soak it with saline for a few hours at night and dab on some Bactroban for a couple of days and it gets better.

I wash my hands pretty frequently, including using the antibiotic soap when I get home from work, but I don't wash them specially before connecting or disconnecting. Nor, for that mater, do I wear my mask--the strings always get caught in my glasses and I'm capable of holding my breath for the 5-20 seconds it takes to hook up. I am, however, very careful to hold the tube connectors with one hand, right behind the screws, so there's little chance of accidentally touching something, a technique my nurses never showed me.

Have you had any major issues other than peritonitis? I have heard that there are several risk factors with PD besides infection and just want to know have anyone had any other issues associated with doing PD.  Some things that I have notice is I stay constipated, pain in left and right shoulders, acid reflux is bad and cramping at times.  I am concerned about the long term effects of PD.

I've never had peritonitis. I've broken a couple of tiny blood vessels, which made my bag a fascinating orange tint a couple of times, but both times it healed itself within a day I wish I would get constipated more often--seems like most of my dozen drugs cause the opposite problem and I pop Imodium tablets like Pez every couple of weeks just to keep things together. I used to get pain in the shoulders and cramps for the first month, but it hasn't happened in years. The reflex annoys me a few days a month. I pop 150 of Zantac knockoff and it goes away.

[highway61]

Hmm... I am not on PD now since I have been blessed with  a donor provided kidney. For the short time that I was on PD I showered everyday and washed my exit site carefully. I still got minor infections at the exit site on the outside. I was usually provided with a cream to apply to handle it, which it did.

I would still recommend that cleanliness be be kept at a maximum.

[lmunchkin]

We did PD for 5 years, and like above post, I handled it with cleanliness in mind. He still got infections.

As for other health issues: I think with diabeties, PD was much harder on him.  He had a couple amputations while on PD. Hindsight 20/20, it was not the best option for him, but the fact that it was at home, was a plus for us!

God Bless,
lmunchkin

[blondie1746]

Hello CAPD/CCPD Users,

2 questions? Do you follow all the steps that were shown to you in your PD training? I was told to clean my transport before and after treatment. I was told to change my dressing every day among other things.  2nd question - What and how do you do your daily routine? Honest answers to my questions please.  Oh one more questions, Have you had any major issues other than peritonitis? I have heard that there are several risk factors with PD besides infection and just want to know have anyone had any other issues associated with doing PD.  Some things that I have notice is I stay constipated, pain in left and right shoulders, acid reflux is bad and cramping at times.  I am concerned about the long term effects of PD.

 Thanks

Here's my routine:  I shower every other day (very dry skin) and change my dressing after my shower.  I use gentamycin cream around the exit site, put on a 2x2 gauze and tape it in place.  At night, when it is time to hook up, I usually wash my hands (but not always), try to use hand sanitizer, sometimes wear my mask, sometimes I just hold my breath!  I am quick about the connections, but I should be more careful.  I've been doing PD for 16 months, and I guess I have been lucky, so far.  I am not good about constantly dusting or wiping down my cycler and the area around it. 

I did have constipation for awhile.  I take a probiotic pill every morning now.  And coffee is helping once again to keep my regular.  I did have the shoulder pain a few times.  Really miserable.  I think it was because I didn't prime my machine correctly and got some air in the line.  Learned that lesson.  And I routinely get the cramping in my feet.  Sometimes during the day, mostly at night.  I've tried tonic water (you have to drink a decent amount), sleep with a bar of Ivory soap at the foot of my bed, and just recently read about drinking pickle juice. 

I'm not sure what other long term effects of PD would be, compared to HD.  I know all dialysis patients are at greater risk of heart attack and stroke.  I haven't had anything major, knock on wood.  Just try to exercise and eat healthy to stay as healthy as I can.  Hope this helps!  (Also hope my dialysis nurse doesn't read this!!)

[amanda100wilson]

didn't wear a mask (had previously done PD in UK where mask is not worn).

Did not always wash hands  because had to disconnect and reconnect at night (could do by feel).

did not tape.

Did not wear a dressing.

Did not use special ointments etc, just showered and used normal soap.

Swam in the sea without a dressing, swam in a pool without a dressing.

Never got exit site infection or peritonitis .  my philosophy is that a lot of these rules are based on routine wound care, and this thing once it had healed, was not like a regular wound.  Relied on non-touch techniques, i.e. don't touch parts that are covered sterile, don't breathe, sneeze or cough over exposed connections when connecting or disconnecting (it's done so quickly that there's no need to).

saying, that, my catheter wasin there for nine years and exit site was well healed before I took this attitude.  they tell you not to poke, but my catheter was embedded dow, a bit like a button in a cushion, so I used to dry around exit site after a shower using clean cotton swab.

I can see an excellent research study based for a nursing student, based on the disparities between advice given to patients from unit to unit, a lot of it a load of hocus-pocus.

[Joe]

I will admit that I probably don't do everything that my nurse trained me to do, but I do most of it. I figure that it doesn't cost me that much time to wash up thoroughly, mask up and keep my exit site clean. I look at it as an ounce of prevention being worth a pound of cure. JMHO-YMMV

[amanda100wilson]

Most of the  connecting/disconnecting when i still had residual function was to go to the bathroom in the middle of,the night.  It was all done as quickly as possible with no fiddle-faddling about .  I also did PD over twenty years ago, when disconnecting bags were new (before that you had to roll the empty bag up and leave it connected ready to drain into when you did the next exchange of fluid).  we used green connection shields that had a betadine soaked sponge lining.On that occasion, I did everything 'right' and had two episodes of peritonitis.   

my view is that advice varies so much from clinic to clinic, that a lot of it,has no  scientific  evidence to support that one way is better than another.  For example, what is a mask protecting against?  Connecting and disconnecting is done so fast that you don't breathe over it because you hold your breathe for,that,period,of,time.  Masks have have a short breakthrough time.  Furthermore, when I am connecting blood lines up for home hemo, no mask is worn.  i could,just as easily get bacteria in there as I could through connecting and disconnecting a dialysis catheter.

[smcd23]

Do you follow all the steps that were shown to you in your PD training? I was told to clean my transport before and after treatment. I was told to change my dressing every day among other things.   

My husband was on PD for about 3 years. He definitely did not follow everything in the training manual. Cats were often in the bedroom during set up and hook up (they hide under the bed, and chasing them OUT of the room would create more dust and whatnot than letting them stay where they were) He would wear a mask, use the hand sanitizer before hooking up etc. And when I set up his machine for him I'd do the same.

2nd question - What and how do you do your daily routine?

My husband did not shower every day. He would check his exit site and make sure it all looked good, and change the bandage if needed but he often didn't even wear the recommended bandage because he is allergic to the adhesive in the tape. He didn't use any special soap, or put any special stuff on it. He would use hand sanitizer or wash his hands when he had to touch the site. We got a talking to when the PD nurse came and did the home visit because we didn't have antibacterial soap. We also have never ever cleaned the shower head like she said we needed. And when washing his hands/showering he would use the same towel and not paper towels or new towels every time like suggested.

It sounds like the pain you are getting in your shoulders are from air in your cavity - make sure you are purging your lines good before hooking up. My husband was using a cycler and sometimes  he'd have to purge the lines more than once because he'd still see a lot of air in the lines. The only other problems I know of happening to patients aside from those mentioned and peritonitis is hernias if you do any lifting or activity while carrying a dwell. The chance of that goes up greatly the fuller you are, and there were certain things my husband wouldn't do on a full daytime dwell and would actually underfill himself or do a manual exchange to remove some fluid to cut down on that risk. Oh I will also note my husband got peritonitis once during the time he was on PD, I guess the average patient gets peritonitis every 18 mos or so, and he went double that almost without an infection. He even ripped his catheter a few times and didn't get an infection from that, and he did one of the rips while he was doing some work on a rooftop. So as long as you are aware and take whatever precautions you feel to be reasonable and are comfortable with, you should be fine.

[KidneyWife]

Emerson, your reply was very encouraging! (my husband started CCPD ten days ago and we are so nervous!) A few questions if you don't mind:

Maybe once a year the site gets a little oozy and I soak it with saline for a few hours at night and dab on some Bactroban for a couple of days and it gets better.

Can you pick up saline solution anywhere? When you say soak it, do you just hold a doused cloth there or do you take a bath in it?

I've never had peritonitis.

How long have you been on PD? What do you think attributes to the fact that you've never gotten an infection?

[Emerson Burick]

Emerson, your reply was very encouraging! (my husband started CCPD ten days ago and we are so nervous!) A few questions if you don't mind:
Can you pick up saline solution anywhere? When you say soak it, do you just hold a doused cloth there or do you take a bath in it?

My dialysis ladies gave me a box of 5ml plastic tubes of saline. I crack open a couple and wet a gauze pad, and just wrap it around my cath where it connects to me. I usually keep it there for an hour or so while I'm propped up in bed watching movies. There's nothing special about the saline--you can get it at any drugstore. Plain old salt water would also do the trick.

How long have you been on PD? What do you think attributes to the fact that you've never gotten an infection?

I've been on PD three years.

I suspect I've never had an infection because I keep away from drooly children and animals, I'm pretty diligent about keeping my hands clean, and I wash my hands after touching dirty things like shopping baskets or a trash can. When connecting tubes, I take special care to move extra slowly to ensure they don't touch anything they're not supposed to.

It could also be because my immune system is really good. After all, it shredded a living donor transplant very quickly, and although I've been on immunosuppressants for nine years and ride the subway to work nearly every day, I've only been sick once.

Or it could just be luck. Yeah, probably just luck.

[BattleScars]

I've been on PD a little over a year now. I find it interesting how the nurses train patients at different clinics. I was basically trained to check my solution to make sure it's the correct strength and there are no leaks. I have a small table where I lay everything out that I need for my exchange after I wipe my table down with antibacterial spray. I have a small plastic bin where I keep extra caps, two clamps, a facemask, a small towel and Calstat. I was told to always wear a mask any time my port is open. I always take the plastic bag that my solution is in and use that to throw my used caps and gauze in as I'm doing my exchange. I was also told to clean my site every day with bactraband. I haven't had an infection yet (knock on wood) but I credit that to a lot of luck and maybe a strong immune system as I haven't always followed the procedure like I should. I've developed a few bad habits that I'm currently working on, mostly out of pure laziness.

[Whamo]

I read most of these posts, and most of them reflected my personal experience.  You certainly want to avoid using scissors to take off your dressing.  I found that out the first week, even though my nurse warned me about it.  My wife got me these really thick gauze pads that were difficult to take off.  I felt like a dummy.  Constipation can be a problem.  I eat a can of beans (salt-free) everyday, and, with my morning coffee, I'm a regular fellow without laxatives.  I am concerned about the magnesium, potassium, and phosphorus in beans, but my main concern is salt.  I'm salt sensitive.  I get big ankles, and retain fluids, if I eat junk food.  I cut out all bread and cheese, pretty much, as well, and my blood pressure is down and my ankles look normal for a change.  If you over exercise the wrong way your internal blood vessels bleed, and it show in your bag.  Walking is okay.  I was an infantry soldier so I love to walk.  You can learn what to avoid by listening to your nurse and/or doctors.  If they ask questions they're fishing for problems.  Their questions reveal what you should note the most.  Another big thing to deal with is enemia.  Your doctor will give you a prescription or a shot if you're low.  When it comes to cramps, that's usually related to fluids.  The best thing is to not drink so much, but being human, you can handle them with Vit E and Quinine (tonic water), and I've heard pickle juice does the trick.  I never tried that though.  After four months I feel like I've finally adapted to CAPD.  Oh, I forgot to mention insomnia.  For awhile I couldn't sleep once I hooked up.  That's a big drag.  I take a sleeping pill, and it's working for me, although I'm concerned about the long-term side effects.  Best of luck to you. 

[winefred]

I have a situation I was hoping someone has gone through the same thing. I had my first pd cath put in in November 29 2012. Toward the end of my training, the last few days my exit site had a green/yellow discharge and the pd cath was leaking. My neph put me on two different antibiotics for 14 days each and we stopped training. Went back after I was done with antibiotics and the infection was still there. My neph said the infection was in the cath itself and it had to come out. So just two days ago I had surgery to remove the cath. The surgeon had me do an IV antibiotic before I went home. I go back to the surgeon on the 9th and hopefully we will schedule another surgery to put in a new cath. I am so scared that I am going to get an infection in the new cath. No one can tell me how it got there since I followed the rules exactly as I should have. I wasnt able to shower for 6 weeks, and i even waited that hole time. Has anyone had an infection in the catheter?  How did it turn out? Is there something I should be doing that I don't know about?  Any input or suggestions would be so appreciated.

[Joe]

Wish I had a good answer for you winefred, but I haven't experienced anything like that. At least not yet. Hoping it doesn't reoccur.

[Whamo]

I've never gone through your ordeal, but I've talked to people that have.  Infections like that happen, even if you follow the rules.  Infections weaken your system, and sometimes to the point where you can't do PD anymore.  You could go forward or go back to hemo dialysis.  Let's hope your second try is successful and without complications.  Bumps in the road happen to most of us on PD.  Hang in there, and good luck.

[Hober Mallow]

Has anyone had an infection in the catheter?  How did it turn out? Is there something I should be doing that I don't know about?  Any input or suggestions would be so appreciated.

I was on PD about two years and everything was going just fine until one day while I was at work my transfer set came loose. Instead of immediately clamping the catheter, I just popped the transfer set back on without thinking, allowing all the germs in the air to enjoy the buffet in my peritoneum. I ended up with a nasty fungal infection I couldn't get rid of (because, just as with you, my catheter was full of germs), was hospitalized for ten days in the most excruciating pain of my life, and, of course, I lost my catheter and had a hemo perma-cath placed.

Even after going through all that, I'd still rather do PD. Hemo was a horrible experience. As soon as I was able to, I had a new PD catheter placed, and I've had no trouble since.

Obviously, there is always the risk of infection with PD, but it sounds to me from what you've said here that this was a fluke.

If the experience has soured you on PD, have you thought about doing home hemo?

[Grumpy-1]

I was doing PD for 3 years until a number of bouts of peritonitis. Infection in the tube keep it coming back.  It was removed, but I'm hoping to get back to PD soon.  My routine is about the same as others have posted.  I wasn't a strict at washing my hands, BUT used sanitiser gel just before connecting or disconnecting.  The PD nurses stressed using a mask, but when I was doing exchanges in a parking lot or at a camp ground (I'm a biker and was out riding during those times) I would not use a mask.  Just hold my breath.  Showered daily and never had any infections of the entry site.   Constipation was an issue for me too. Then it switch diarrhea.   I was told to drink as much water as I could, but after a while, it no longer tasted good and so it was a pain in the butt to drink water. 

Take aways from all that has been said - 1) keep your site clean. 2) keep your hands clean 3) keep your exchange area clean (at least as much as possible) 4 KEEP CLEAN !!!!!

Grumpy

[cosmo]

DH has been on PD for almost 6 months. we keep the exit site clean, use gentamycin on it when we remember, wash our hands and use our masks, but otherwise, we don't shut the door or turn off the fans and the dogs still sleep in the bed. no sign of infection in sight!

glad we're not the only people who just sorta follow how we were taught...

[tito]

Cosmo--

I can see you're a dog lover. I can't bear to wake them up to get them out of the room. As long as they're not next to me, I let them stay when I hook up. Their breath is so minimal. I'm going on 4 years with PD - no infections. I don't follow the instructions to the letter - just use common sense. BTW, the title of this thread should be PD Protocol, not etiquette. Etiquette makes you think of how you lift your tea cup!

[Emerson Burick]

BTW, the title of this thread should be PD Protocol, not etiquette. Etiquette makes you think of how you lift your tea cup!

Agreed. And it should address issues like:
* What's the etiquette of emptying one's daytime exchange in a communal bathroom sink when someone at the next basin is washing his or her hands?
* How much detail is too much when your work colleagues ask how things are going?
* Is it okay to use terms like "useless son-of-a-bitch" and "bastard" in reference to one's kidney(s)?
* Is it vulgar to wish out loud that the guy revving his motorcycle outside your window crashes into a brick wall and you get one of his kidneys?

[MaryD]

Or how to answer the door elegantly while bearing PD bags.

[papacat]

BTW, the title of this thread should be PD Protocol, not etiquette. Etiquette makes you think of how you lift your tea cup!

Agreed. And it should address issues like:
* Is it vulgar to wish out loud that the guy revving his motorcycle outside your window crashes into a brick wall and you get one of his kidneys?

I don't know if it is vulgar, but I think it is a darn good idea! Thanks

I also agree that the title PD Protocol would be better than PD etiquette. However, even I might have used an unclear title in the past. Unfortunately, once a title is used to start a thread it can't be changed!

papacat