PD Training - how long?

[IOnlyGet5]

I'm having an issue with finding out how long PD training will last...my access surgery was Nov 7. I need to board my dog & drive 100+ mi round trip so I need to know how many days to plan on doing training.

I fear my exit site is infected (pain, redness, pus)  but the unit nurse didn't think that would interfere with my training as long as im not lealing anymore...

[cassandra]

O IOG5 that's not nice to hear. Are you on antibiotics? It's too long ago for me to be able to give you a sensible answer about the length of training. I think it was a week. Just wanted to wish you luck and well.
Someone with a more up to date answer will chime in soon.


Love and luck, Cas

[kickingandscreaming]

It's been 2 years since the training and I don't quite remember.  I think it was 5 full days if I recall correctly, but your nurse and clinic should be able to tell you. 

I'm more concerned to hear about your exit site.  I, too, had an infection there in the early days.  That is, unfortunately, a good way to get peritonitis-- something you definitely don't want to get..  When I had it I was put on systemic antibiotics until it cleared.  You should be too.

[sahern]

My training lasted 3 1/2 days, I  live 350 miles away from the clinic and if the person picks it up quickly it can you do not have to do the whole time that training normally takes.  I was told to begin with that it could be a week to a week and a half but they try and get people that live along way from home trained sooner.  If anyone is wondering a bout the distance to the center I live in Alaska and that is the closest PD clinic to me.  There is a Hemo clinic in town but they do not have anything to do with PD.

[Charlie B53]

Average is right around 5 full days.

Some people learn so quickly that time may be shortened.

Pay attention.

If you have ANY questions, ASK.

This is critical as this is your life.  Infection prevention is MOST important.

Ask me how I know.

[IOnlyGet5]

I'm afraid to hear how you know but I have to ask...how do you know?

[Charlie B53]

3 1/2 years on PD I must have failed to exercise enough caution setting up my Cycler and 'touched' one of the open fittings while making connections.  The pain that I thought was simple drain pain never went away when I filled.  It just kept getting worse.  About 2 a.m. I figured it out, when I could barely breath.  Capped off, took a sample in my clear jar, Y'up, cloudy.  Son took me to the E.R.

Almost 3 months loading my bags with antibiotics.  Every time I finished the antibiotics the infection would return. Surgery to remove the tainted cath, put in a Hemo Cath.  That was a year ago.  Just started using my new fistula yesterday.  Hemo Cath will be removed soon.

Stay CAREFUL. Always!

[Kansas75]

I had my access surgery on November 14th and my first day of PD training was December 1st.  I am surprised why you haven't started yet.  What did they tell you before your surgery when you were supposed to start dialysis?

As far as the duration of training is concerned, I was initially told to plan on ( 4h sessions, and I "graduated" in (6) due to previous PD exposure via my sister.  Training is very straight forward IMO, and the big thing to always remember is to stay on top of any suspected infection, be it peritonitis or exist site issues.  Sounds to me like you should definitely contact your Dr.  Also, exit site care was one of the topics being covered in training.  With you not having started your training, how do you maintain your exit site?

Best of luck and Happy Holidays!

[Simon Dog]

If you are on PD, it is worth having a set of antibiotics in your toolkit.     After calling your on call RN to get permission, you can save a cloudy bag to take to the ER, rinse with a couple bags, then fill up with a bag spiked with antibiotics so you will not be heading further downhill while you wait in the ER behind the various uninsured illegal immigrants stopping by for primary care.

[kickingandscreaming]

I'm also surprised that you don't mention having your catheter flushed while you wait to begin dialysis.  Your "team" seems to have forgotten you.  Time to make some noise.

[Treasure]

Hi, gang! It's been a very long time since I actively participated on IHD. Missed this community.

I am on my third attempt at PD-- the other two times I had issues with my peritoneum leaking, but this time we did pleurodesis to plug up the holes (ouch).

I went through two weeks of training this time since things were working (at first), but now I'm wondering if I received adequate dialysis during training. My training schedule was a bit helter-skelter (and not because of COVD-19, mind you).

 I had about 7 trainings, scheduled for 10 am to 2 pm each day-- I'm very techie, and had been through some of the PD training two other times, so it wasn't going to take long for me to catch on.

What I question is if I received enough dialysis during those short trainings-- we only used one 2L 1.5 or 2.5 bag and dwell time was about 1-2 hours for those trainings. I only had one hemo treatment over those two weeks, and I make zero urine (haven't urinated since I lost my transplant 13 years ago).

Aren't your training days supposed to be full days? Don't most patients have longer dwell times during training so they are at least getting clean during training? It seems like I didn't get enough dialysis during training. I am sick now, a week after being home-- I think it's a combination of inadequate dialysis during training, and the last few days, my catheter migrating (separate issue... was able to fill and drain okay during training and first couple of days at home).

Anyhoo... there were other issues with my training nurse, but I need a bit of feedback on what's usual for the adequacy of dialysis during training,  before I add this particular issue to the pile. Looking forward to feedback!

[cassandra]

   Hi Treasure lovely to ‘see’ you back here, and great to hear you are doing okay mnow on PD.
I have no answers about training and adequacy during training as it’s too long ago I was there.


Just wanted to say I’m glad to ‘see’ you back.


Love and luck, Cas

[Cupcake]

Welcome back Treasure! It was almost 4 years ago when I trained for PD so my memory may be a little off (I have since had a transplant) but my training was at the clinic, 5 sessions varying from 1-3 hours; they tried to not use much volume the first day or two as my tummy couldn't tolerate it. I remember the very first time, they only put in a little, then capped it off and had me leave for a few hours and I thought I was going to faint--it must have made my blood pressure drop. On the fourth or fifth day the nurse came to my house and watched me do a fill and checked out my setup. I started the cycler right after that; didn't spend much time at all on the manual fill/drain.

sounds like your training is not making up for lost dialysis time; how is your blood pressure and weight? If you think you are volume overloaded, let your clinic know and you should get some hemodialysis until you are set up. If you don't void at all, you will likely need long sessions on the cycler or multiple fill/drains/day.

Most importantly, everyone learns at a different rate, and you have to be your own best advocate and keep asking questions and bugging them until you feel comfortable. Its serious business, and they need to help you until you feel comfortable. Best wishes and keep us posted.

[Treasure]

Thanks for the welcomes, Cassandra and Cupcake!

I've been at this a very long time, and I am notorious for advocating for myself and other patients. As far as training goes, I'm all over that-- and have contributed to the technical writing for some of the home dialysis practices that other patients have benefited from over the past 16 years. I have done in-center hemo, home hemo and this is my third attempt at PD. I have participated in clinical trials for new dialysis modalities. I have even "broke" research into transplant medications and treatments because if anything can go wrong, it will happen to me. When I say I'm all over "it," I am well and truly all over it!

I'm building a case for changes that need to be made in the PD program I'm currently enrolled in, and the relationships between the local surgeons and PD staff

To build a case, I start with the anecdotal to see if there are patterns in the experiences of others that might be helpful, and then request the documentation from my own treatment that's needed to bolster the case I want to make, once I have developed a "thesis" about my care.

Getting feedback from other patients helps me organize my deep-dive searches into the information I need to make a case.

Clearly there have been some irregularities in my training-- which I have brought to the attention of some of the PD supervisors, but decision-making on their part is mired in "wishful thinking" and "prayers," which might be appropriate for some things, but are not getting me to a place where I'm not having to have surgery twice a week, and spend days unable to breathe because neither PD nor hemo are being administered in a way to keep me healthy.

If I don't have a repeat of last week (where I had surgery on my PD catheter once, and then a second time to fix issues with the surgery the day before), I'll update on my findings. In the mean time, All Be Well!

[Cupcake]

you will be a very valuable resource for everyone on this site, and thank you for your efforts and experience! great to have you along. Hope this round of PD is a great success.