I received a call late Friday from my dialysis "case worker" at the dialysis center to let me know that some of the supplies that would be needed for my PD training this week had not come in, so they were going to reschedule my PD dialysis training until next week. They want me to come in on Wednesday for another dressing change and PD catheter flush.
As an update, i was able to travel to my dad's house two hours a way on Saturday and cut his grass (riding lawn mower, so no biggie to do that) and did a little weed eating using his light echo trimmer. In all about 3 hours worth. No issues from any of that (including the 4 hours driving time) I'm happy to report other than being tired enough to rest all day yesterday. The biggest issue I have is the itching as the surgery site heals. Can't scratch, so I just rub the top of the dressing to try to get it to stop itching under the bandage. And of course I can't WAIT to be able to shower again!
I'll post again after PD training starts next week. Just letting folks know this delay is something that can occur.
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RonZone
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Hi Ron. Your energy level sounds pretty normal all things considered. It's amazing how tiring driving can be. Good luck with training next week. It's pretty easy, although it may seem overwhelming at first.👍☺️
yeah, if someone hadn't told me I needed dialysis, I probably wouldn't even know it other than being a bit more tired after a day of doing things. Thanks for the good luck wishes. I'll post how training goes as it happens.
Thanks for keeping us updated Ron. That was great you were able to help your dad yard work.the bumpiness of the riding mower didn’t bother you? I know when I do weed whacking I’m exhausted .So right now letting that go ,my husband can’t do it anymore cause of no cartilage in his wrist they hurt to bad. Three hours you got your exercise , Thanks for the reminder that some thins are out of our control like the supply at the center didn’t come in, sometime things this happen. Best of luck in your training . Your post help me knowing what I have to do when my time comes.
I really wasn't bothered by the bumpiness. And I was a bit worried about using the weed eater, but I didn't do any drastic moves, let the machine do all the work for the most part and went slow, so I was able to handle it ok. Didn't feel anything as a result of either, except very tired after the 2 hour drive back home. I wanted to get all that out of the way before I started actual PD. Not sure how i will handle the 2 hour drive up there with a belly full of PD fluid, then figure out how to do an "exchange" while I'm at my dad's house, then the 2 hour drive back with some chores worked in before and after the exchange. I got a feeling I won't want to be riding that lawn mower under those circumstances, so his grass will have to wait until I get comfortable doing PD before attempting all that again. And yeah, some things are out of our control, just deal with it as it happens. I'll keep posting stuff. Those who are interested can read it, others who won't be doing PD can ignore it. There's no way anyone can know everything about all of this kidney stuff. I myself have to pick and choose what to put in my poor ole brain so it doesn't get too crowded in there!
Please don't worry. You likely won't have a belly full of fluids on your next trip to see your dad if you opt to use a cycler. The cycler takes care of clearing toxins without requiring much, if any, dialysate staying with you during the day. In my hubby's case, the lesson on "manuals" took only one day. It was simply a show and tell. He went directly to the cycler after that day. Did we forget how to do manuals? Oh yes. Did we worry about it? Nope - there are lots of YouTube videos on it. I suspect your cycler is in that delayed shipment.
This is where your husband's experience will differ from mine. My pd nurse sent me my schedule yesterday where she said "you will be doing 4 manuals per day every day until you are trained on the cycler. " The other PD nurse who did my home "inspection" a while back said i would be on manuals for 4-6 weeks before starting the three day cycler training. I have that in my notes from that home inspection visit.
Lol...Our nurse didn't wait around. She was responsible for lots of patients and only a few rooms were available for training or anything else. So things moved fast - in and out quickly. She had an extra cycler on a shelf waiting for patients who needed them. So we got ours fast. The parking lot was jammed with cars, busses, cabs. This was a DaVita Clinic right outside DC. Our training was a whirlwind, but we landed on our feet Our nurse did stop by our house with cycler in hand, surveyed our layout and supplies, and walked us through the first night. (There's always a 1-800 number one can call if issues come up.) Anyway, I was completely unaware how different trainings can be. I think hubby's was completely over within two weeks time, and that included a clotting (fibrin) issue that the nephrologist resolved. Keep on keeping on RonZone!
HI Ron,Boy these journals are really helpful. Although I am not planning on dialysis soon, that's my plan, I will have to make a choice as to what I am going to do. PD was an option my neph said would be good for me. But I have some real concerns. The main one is that the solution used is glucose based and I have heard many people complain about the weight they put on because you absorb the calories, which is about 400-500 cals a load. YIKES! Since I am fighting a weight issue, and it is putting me off the transplant list, this does not seem to be a good solution (see what I did there?) I am also diabetic, even though now I have gotten my A1c down to 5.6. I do not want it to go crazy again.
Hey, I'll give you a play by play on the weight gain issue with PD. I'll weigh myself before my first class next monday, put it in my post and then will post any difference as i go along over the next several weeks and months. I'm going to do my best to wear my dietitian out with emails and calls to be sure I'm eating as healthy as possible, but in small enough portions to help prevent much weight gain. We'll see how successful I am in that endeavor. I lost 30 lbs in the last two years just because I knew I would gain weight on PD. Hopefully I will not gain all of that back, but 10-15lbs would be acceptable I think. We'll see.
As for my decision process. I want to continue working full time, and doing in-center hemo just would not work with that. I can work (computer based job) while sitting here with a belly full of PD solution. And then once I switch to nocturnal, I will be able to continue to work without issue (that's the plan, keeping my fingers crossed). Now, I realize that PD is a short term solution (4-6 years most likely), then I will have to switch to home-hemo should a transplant not happen for whatever reason. Home hemo just seemed very complicated, so with working full time and being sole caretaker for my dad, it seemed a bit much to handle. I figure in 5 years, I'll most likely be fully retired, and my dad (age 95 as of Sept 3) will not be with us any longer, which will allow me to devote more time to learning and doing all that is required for home-hemo. I'll be 75 at that time with not much else to do :-). So that's my plan. We'll see how it goes. Every person's plan will be dictated by their own situation. Like snowflakes, no two are exactly alike.
My hubby lost his kidneys to T2D and went on PD. While on PD, he managed to get rid of all diabetes meds (insulin) through diet and mild exercise. While on PD, he was encouraged to eat more protein and that helped a great deal. And he continued to restrict his sugars and carbs as recommended by all his specialists. It surprised everyone that he managed to kick the disease to the curb. I'd like to add that there is a dialysate (purple bags) that can be used in place of the glucose based solutions (red, green, yellow bags) but it doesn't clear toxins in an optimum way. At the time of his transplant, he was eating well and his A1Cs were in an optimum range. He did lose weight, but the weight stabilized in the normal range thereafter. After transplant, his T2D swooped back in due to the immunosuppressants and he is again on insulin.
Thank you for your PD posts. After 2+ years of hemodialysis at a Fresenius Center about 6 miles from my home, I have decided to switch to PD while I wait for a transplant. I hate hemodialysis. All your posts have helped me understand what will happen to me. I have to travel about 1 to 2 hours for surgery and everything, which I am lucky that my brother drives me to and back. He has been with me since the beginning with transplant center visit, testing, right kidney removal, AVG placement trips, starting dialysis, several trips to unclot the graph, trips for more transplant testing, trips foran AVF earlier this year, and the most recent trip for more transplant training. Your posts give me a picture of what is to come. Do you do your PD while you sleep, which is what I am planning? If so do you know if my dog still be able to sleep at the foot of the bed opposite me? Will my cat still be able to sleep with me and walk everywhere in my house? Thank you again, take care, and I wish for you a transplant ASAP. 🙏🙏🙏🙏🙏🙏
Hey, sure, I'll keep the posts coming as I go through all this. You are lucky that you have your brother. My brother died in 2010 at age 59. I miss him terribly. You should easily be able to switch to PD. Having done hemo for over two years, you would know more than most of us before you even start.
The biggest issues to deal with seem to be:
1. No major abdominal surgeries that might prevent PD from being a good option
2. Storage space for all the supplies (can't wait until they get the new water filter system tested and approved to reduce the amount of boxes)
3. Clean room where you do PD. This just means you need a room very free of clutter so things don't collect dust, it should be dust free, you will need to be able to turn the ac/heat vent off and ceiling fan off so no air is moving, you will need drain access to a nearby bathroom or be prepared to carry the drain bag to empty it, and it will need to be animal free which brings me to your concern.
I have two cats, and I started training them a month ago not to enter my bedroom, so now that I've got the room "clean", they do not spread cat dander all about. My center wants me to start out doing manual exchanges for about a month, then switch to the cycler at night. If I were going to do manuals forever, I could use a different smaller room for my PD and a chair for the exchanges, but since I want to do nocturnal PD, I had to make my bedroom animal free. The cats have gotten used to not being in here, so it's not been that big of an issue. But if you're used to having your animals with you at night, yeah, that's going to be a big change for you, and them. But it's just what they and you will have to do. Animal dander can hold bacteria and float around in the air. If it get's into you via your catheter when connecting, it can cause a bad infection, so not worth the risk. Now all that being said, I have read where some folks shoo the animals out during connection, then allow them in once the connection process is complete. So that will be up to you and your dialysis team to figure out if it's worth the risk of infection or not. Just as others have done. I chose to keep my room animal free going forward. I spend plenty of time with them in the rest of the house and they've gotten used to it. A dog might have more issues with the change than a cat. Not sure.
Oh wow! Your center is going to have you do manuals for a month! Oh my! Ours only took one day and transitioned us instantly to a cycler. We were ecstatic about that. You're gonna have a huge amount of boxes to contend with for a while - a month's shipment of manual solutions perhaps with an overlap of a month's shipment of cycler solutions.
We have 2 big dogs and a cat. One dog and cat sleep on the bed but not under the covers. Hopefully I can do the sterile hook up in bathroom and then get in bed.
I have a dog who has always slept in bed with her on top of the covers. This summer I’ve transitioned her to sleep in her crate instead. She’s taken to it without problems. We’re both sleeping well. I know right where she is should we need to get to the basement for a tornado… and I’m ready for dialysis or transplant whichever comes first IF they still think I’m eligible for a transplant now that they’ve found I have gastroparesis.
She gets pretty jittery around machines (primarily their noises). So, I knew I’d need to transition her to her crate before I need to start dialysis. She’s a little 9 lb Shih Tzu who can’t get up on my bed unless I lift her up. This fall I’ll transition her away from getting up into the bed at all. I’ll also begin closing the door to my bedroom and master bathroom. Izzy will continue to have free run throughout the rest of my house. But I’ll keep her out of the bedroom and bathroom where I’ll connect and disconnect from the cycler. She wouldn’t have tolerated this well s few years ago but she’s older now …
Again, you will need to ask your "team". Some may be more flexible than others, but unless you plan to wash those covers every day, the "dander" can easily fly off the top of the covers, get in the air and into your pipe from what I understand. And that's a huge bad thing. Look up images of peritonitis when you get a chance.... not fun or pretty My two felines are not allowed in my "exchange room" any more. But hey, they got the rest of the house!
Be prepared for your PD nurse not to approve connecting in the bathroom. They say it is the most germ infested place in the house since it stays damp a lot. Not saying they won't let you, just be prepared for that to be the case. And it's the animal "dander" that floats around in the air that is part of the problem, not just hair. If any of that dander which is covered in bacteria gets into your tube, it can cause a major infection inside. So just be aware of that with PD. Not sure if it's the same requirements for home-hemo, that would be a good question to ask on the forum in a new post. And you can get others info on the bathroom connection idea at the same time concerning the animals etc. Folks will shoot straight with you. Then you can also contact your local clinic. They have education folks and even a social worker from whom you can ask supportive questions like that as well. Won't hurt to ask!
Thanks Ron this is so helpful. I plan on grilling… sorry talking to my neph when I see him Sept 30 and ask him questions based on your experience and others here.
Thanks Ron for your ongoing posting. Its invaluable to have someone tell you exactly what they are going through in the next stage of this journey. You are a gift to all of us
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