So, since my official PD training got put off till next week, my PD nurse had me come in today for another dressing change and "flush" of my pd catheter. She did not do the "sterile" setup for this, just the "clean" set up that included the extreme hand washing techniques and she did use clean gloves, not sterile. And during the process she actually taught me how to do the dressing change myself going forward. AND I'M APPROVED TO TAKE A SHOWER IN THE MORNING! whoo hoo! No more stinky Ron after 4 weeks of sink baths. I will remove the dressing, shower, dry as directed - tummy first with a clean towel, Then I will apply my own dressing after that. More on that tomorrow when I've actually done it. While she did the 2500 ml "flush" (about 600ml each for 4 exchanges one right after the other with no "dwell time"), she had me read and/or sign about 40 pages of paperwork. I didn't get a copy, so I can't provide a list yet as to what those were. Once I get a copy, I'll make a list. She also gave me an iPad on which i will log in using my Fresenius log in credentials that will give me access to "training" tutorial modules. I've not actually done that yet, so more on that after I've actually logged in and looked it over, but at least I won't be bored between now and Monday when i start the training, and I have a little time to study it before the training which is actually a good thing so my brain has more time to absorb it all. Oh, when she had completed the full 2500ml of fluid, the drain bag had some stuff in it that looked like small shreds of watermelon. She let me know that that was "fibrin" and that she would be adding some heparin in my PD solution on Monday to help clear that up. She said I should watch out for that each time I drain. I didn't think to ask her how you're supposed to look for that when I'm on the cycler and it all happens at night and drains into the toilet. I'll pose that question when the time comes I guess. Don't want to rock the boat too much at the start of the voyage and get me on her "difficult" patient list She told me today that she has 22 PD patients. The other PD nurse has 21. When I was about to leave, she gave me a goodie bag of stuff that included the following (even though I won't "officially" be a patient until Monday):
5 pads to use to lay on my equipment table that are "clean" but not necessarily sterile.
Box of 50 ZD-pore 4x4 Island Dressing (like a large bandaid to use to cover the exit site
Box of 200 AMD-RITMED 2x2 non sterile "sponges". Basically gauze type squares. I will put the ExSept cleaning solution on those to clean the exit site. You use three wet ones and three dry ones each time.
A 500ml bottle of ExSept Antimicrobial Exit Site Skin and Wound Cleaner
Three rolls of white tape
A PD catheter belt that I can use to put the end of the catheter in instead of using a ton of tape to take it to my belly. We'll see how that works out. She only had a small, didn't have a medium, so we'll see.
The iPad and charger
PatientHub Registration Checklist instructions.
Not included is the bleach water I will need to use to wash down the table I will use to place supplies while doing an exchange or dressing change each morning after I shower. She said use 100 to 1 bleach water (store in tupperware container). She said to keep another tupperware container with 10 to 1 bleach water to clean up any pd solution that might accidentally get on anything outside the drain bag.
I know I'm forgetting something. I'll post anything else I remember in a follow up after I've watched some of the training video's.
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I forgot to post that before showering, I need to clean the shower head with Clorox to rid any bacteria that might be hiding on/in the shower head. That's part of the showering instructions. Also she said to NOT use bar soap as it can grow bacteria. Use pump style soap instead. I bought Dial antibacterial soap to use for now. I guess I can switch to any kind of pump soap (walmart brand) later once I know my exit site is totally healed and the scab has fallen off. She said to wash around the exit site area first with clean wash cloth, then move on to other more stinky parts
My PD nurse also said they would give me some ointment to go on my exit site, but it wasn't in my goodie bag, so I guess I'll get that next week.
The ointment is a bit of a double edge sword. It kills any bacteria on the skin but it also makes it quite wet which attracts fluff and dust. If you put a band aud over it then again the area is quite sensitive. I have found that my exit site is happiest when left alone in the fresh air. Obviously mine is all healed as it was three years ago I had it put in. Once yours has calmed down try and avoid any tugs or trauma to it. It's easy to catch it. I have forgotten to disconnect and pulled it. Once I actually got it caught on the bedroom door handle! I normally stick it to myself in about three locations so avoid the risk of having a big loop of pipe flapping around.
ahh, ok, yeah, I'll probably nix the ointment after a couple more weeks and see how it does. And yeah, I can see where I'll have to be careful not to let this thing get caught on stuff. I'll probably wear a t-shirt all the time if nothing else just to help prevent that event. Wow, three years already. Time flies when you're having all this fun. right?
Yes indeed. I was just going downstairs fir a glass of water. A loop of my pipe got caught on the door handle. Fortunately I had three bits of medical tape sticking the pipework to me so they took a lot of the force of the tug but it still pulled at the exit site. I was so annoyed with myself. But these mistakes are learning opportunities so I accepted it as that.
Usually I am not asleep yet for the first drain so I watch it go through the drain line. I can see it in the piece that connects your catheter to the machine. Does that make sense?
Ahh, gotcha. That's very good to know that you can see it as it goes through. I had been wondering about that. You just saved me from asking one less question during my training I'm sure my PD nurse will appreciate that. You know they have to get tired of answering the same questions over and over. You would think they would put out a huge Q&A booklet
There's a little bulb on the drain line using the cycler (closer to the machine so you can watch it) & you can see fibrin in the bulbous thingy. I had about 2 incidents of that in 6 yrs
hey, you and me both, but we both know.. chocolate=Phosphorus, so I guess I'll just have to settle for a Twinkie. There's absolutely nothing in those. In fact, I've heard if you want to get ALL the nutrition that's built into a Twinky, eat the wrapper and throw the Twinky away
Exactly right with Twinkies. Now chocolate cake is the breakfast of champions. Eggs, milk, butter.... alllll yummy..... Of all the things I have given up, chocolate cake is the hardest. Everyone knows for my birthday; it is all about the cake more than anything. Enjoy your shower tomorrow.
Hey, so I think birthday cake is very different. Contains absolutely NO bad stuff if you limit it to just one big slice. Right? That's my theory and I'm sticking to it come my next birthday. Potassium be danged! Hey, thanks for the shower enjoyment wishes
Darn it now I want chocolate cake...it's my favorite dessert besides cheesecake. Ron all these steps make me concerned about how I will do it. Still I'd rather all this than go through hemo at a center. I'm so small that any mistake could be very uncomfortable.
Hey, I may be making this sound too complicated, but I promise, after you've done it a few times, it will be as easy as doing dishes And hey, I'll take a piece of that cake! We may have to take one day a year and make it chocolate cake day on here!
I can second that...of course my phosphorus numbers are good so maybe I'll have a small piece later this month. It's my silly potassium that's killing my ability to eat things I like.
Yeah, potassium is a booger. I hated giving up all the potassium laden foods like potatoes, tomatoes, etc. Do you have a good list of high medium and low potassium foods so you can pick and choose what's good for you?
Yep and when I travel for work I check out menus and find the lowest sodium/potassium choice. Luckily my boss supports me and if I can't find anything to eat we don't go to that place.
That's good that your boss is supportive. Not all are as you will see where others post on here dealing with difficult employers. So keep him happy as best you can!
When I had a chest port for hemodialysis, the tell you not to get it wet, showers only. I love my deep bathtub so I purchased off of Amazon, the sheets that you put over the port. I also had the Island bandages and tape. If bandage felt wet after bathing, I would change my bandage myself, which I know is a no no but never got any infections. I am a 58-year-old female. My bathroom was clean. I guess I will have to order one of those plastic drawer cart with wheels and use the too as my prep area. I pray that you Ron and everyone on this site don't ever get an infection. 🙏🙏🙏
Thanks for the prayers. I can sure use em! I'm terrible at doing things in the "correct order", but I'm trying to be super careful. I forgot that you had had a chest port, so you know some of this already.
Pleased it is going well. Funny how there are differences between the two countries. In UK they insisted that i wait 6 weeks for a shower but I got fed up with thar and only lasted 4. Also in UK we don't wear a mask when connecting or disconnecting yet i understand you do in USA. In the USA your nurses seem obsessed with adding heparin as soon as they see any fibrin. I even know some American PD patients that are adding it every exchange. You'll certainly get fibrin in the drain bag when you are doing flushes and it's actually a good thing that it's come out rather than accumulating inside you as that will eventually clump together to become a big mass that blocks up your pipe. That is why the regular flushes are important to wash it out when it's small bits. Over here my experience is that they are very reluctant to use it. We certainly don't get a supply of heparin to keep at home. Normally once you start PD proper then the regular exchanges will be adequate in washing out any little bits of fibrin that may form.
What's this bleach water? That's another thing we don't use well certainly in South East England. You might find it easier to get a large plastic tea tray and keep your dialysis stuff on that. You can keep that clean with a sani cloth wipe. When I go away I always take my tea tray with me so I don't have to worry about the surfaces in the hotel.
I like the approach in the UK. My hubby was put on Heparin immediately too for fibrin during the "training" period. I have a deep respect for the dangers surrounding blood thinners after my hubby recently had brain surgery to remove a a massive blood bleed causing disorientation and more while being on another thinner. Shockingly, apparently about 25% of cases on my hubby's critical care unit were from bleeds incurred from relative minor falls, etc. Also think my hubby had a minor bleed during his transplant surgery, too, since he wound up with a-fib and foot drop then - which immediately went away too after his brain surgery. His neurosurgeon wrote scathing notes to all of his doctors telling them to lay off, lol. In my opinion, for dialysis, it's best to hop onto a cycler or do regular manuals to rid oneself of fibrin as quickly as possible - hubby never had fibrin issues once he was on the cycler. Your comment regarding using a plastic tray for setting up is good too. Dialysis stuff is already in sterile packaging, so simply sterilizing a tray makes sense. Appreciate your perspective from across the pond!
The bleach water is basically doing the same thing as your sani cloth wipe. At 100 parts water to 1 part bleach, it's not very strong, but strong enough to kill any germs that might be on the table I guess. I may take your approach and just buy sanitizing wipes. Especially when traveling. Don't think i want to take a container of bleach water in my suitcase. As for the heparin. I asked if there were any side effects to that, the PD nurse insisted there was not, but after reading Darlene's experience, I wonder. But hopefully they'll let me start using the cycler sooner than later and that will solve that issue. I to appreciate your comments and sharing the differences. It's good for people to see them so they can make up their own minds on how they want to do things.
I asked my PD Nurse about using Heparin and thinning my blood...she pointed out to me that I wouldn't be injecting it into my bloodstream, that it is introduced by the Dialysis fluid and enters only into my peritoneal...it is a very small dose...3-4 ml....and it is used to break up the fibrin so it does not clog your catheter....which would cause alot of problems....I used it about every other day when I first started because there is alot of healing going on in our bellies...now I rarely need it..only if I see it in my tubing while cleaning my exit site or my drain times start increasing, then I will add a few ml's in my Dialysis Solution that night
Hi Ron. It is interesting to read your posts. It sounds like tech is more integrated into the services stateside than what I experience here in Canada. It could be my particular dialysis team/region. Mupirocin is the ointment I use at the exit site. You will definitely appreciate the bandaid technique that a lovely member of this group put up last week, rather than the belt. I am doing "the bandaid holster" and I love it. Have fun prepping for next week. All will make sense it short order.😊
Actually I found out that I don't actually need the iPad they gave me. I can log into the Fresenius patient portal and the training modules can be found by clicking a link on there, so I can look at the training information, videos (that are actually just links to youtube videos), and can print information from my computer to put in my binder for future reference. And it will be available for me to review anytime I want going forward which is good. I'll post more about that later today after I've done a few more tutorials. So it's basically just a website with info and video links. Anyone with a Fresenius log in ID can see em.
You may like using a PD belt. My hubby became super sensitive to bandages after a while and resorted to using a belt. He tried out a few and ultimately settled on a very affordable wide one. Amazon carries a big variety. As a footnote, if you ever need to go to an operating room for any reason, doctors will leave your belt alone.
I couldn't get on with the PD belt but only because I found the velcro fastenings overlapped the belt slightly and constantly scratched my skin. A slight alteration to the design and I reckon it would have been fine.
Really depends on how much tubing you want in bed with you or running alongside your bed over to the cycler, etc. If the cycler is at the foot of the bed, for example, the tubing will go down towards it, under your t-shirt to the cycler, etc. The tubing is simple, just don't roll over on it or you'll get an alarm. YouTube has zillions of videos on peritoneal dialysis - manual or cycler. "Willie" shows how he and his wife do dialysis and also shows him getting into bed with the tubing attached. The link to that one is here. youtube.com/watch?v=XxjM-Ps... Honestly, YouTube rocks the dialysis world. Real world videos by real people.
Hey, with PD you do the manual exchanges during the day, but when folks do PD at night, you load up all the bags hanging on the machine and it uses one, then uses the next, then the next, then the next automatically while you sleep. No fuss, no muss. Oh, except for the warnings that go off if you roll over on your tube or if the machine has an issue etc But no, you don't have to change the bags once you're on the cycler. That's what I'm shooting for in about 4-6 weeks. They want me to learn how to do manuals by memory first, in case the power goes out for a couple days or I run into a situation traveling where they machine isn't available for whatever reason.
Thanks soooo much for these posts. I’m reading and learning! I’m still hoping that they’ll move me from inactive back to active status on the transplant list within a few months. But, if not, I’ll definitely find myself pursuing PD. At my age PD isn’t necessarily a bad thing either—at least that’s my thinking at the moment🙂
Hey, you are more than welcome. You gave me sooooo much info before I got started in all this it has made it a lot easier. I do hope you get back on that active list so you will never need this stuff, but if you do, yeah, it's not that bad. And being an educator, you'll grasp these instructions and tutorials a lot faster than me, I have no doubt! Heck you will be teaching the class within a week!
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She told me today that she has 22 PD patients. The other PD nurse has 21. When I was about to leave, she gave me a goodie bag of stuff that included the following (even though I won't "officially" be a patient until Monday):
Started PD day two 
First day of dialysis
Young Adult Kidney Patients Doing PD Dialysis
