Anyone here on Peritoneal dialysis (PD) with Parkinson's (PD)?

[qigonger]

Hi, I am 75 years old, have CKD and my nephrologist is recommending PD dialysis for me. I'm at the point where it's going to be needed in the future because my kidneys are getting worse but I don't need it right this minute. I also have Parkinson's and that along with carbidopa/levodopa type medication causes slow intestinal motility, constipation and all kinds of digestive issues. I have to take Miralax and other laxatives daily that don't work that great. I worry that having a tube in my belly will make things worse. It could affect absorption of Parkinson's medication and constipation also blocks absorption of that medicine as well. With Parkinson's any changes make things worse. If you are on PD with PD, I'd love to hear from you, how it's going and what to expect.

Thanks so much!

[bumblebee_tuna]

Most PD dialysis patients are already on Miralax so there won't be a change there. What did the Nephrologist say? Usually on PD you want empty bowels because it works better and lowers the risk of infection but it's not an absolute deal breaker.

I don't have Parkinson but I do suffer from RLS and takes low dose opioids which cause constipations. You just have to deal with it.

[qigonger in reply to bumblebee_tuna]

Thanks for the encouraging response, Bumblebee tuna! Good to know it's not a deal breaker. My nephrologist doesn't know much about PD with PD, nor does my neurologist. They just look at one disease at a time I guess.

[Beachgirl32]

I don’t have Parkinson’s but I did of a year snd a half I just have a question with your Parkinson’s usually your hands will shake would you be able to audition either manual clamp the bags hang up bag ect with Machince able to push all the buttons put in the cassette . I know I stay constpated a lot on pd constantly you saying the medicine you are on don’t work that great I would be afraid you may stay constipated . I hope you get some answer with someone who has Parkinson’s . That’s a question for your doctor about the Medi medication being absorbed. If you have a partner, I think that would help you do the PD. I never thought I would like Hemodialysis but I personally feel better on Hemodialysis and I did on PD dialysis and I only had to go to three days a week so I get four days off like that versus that I had to do PD every night. Good luck whatever your journey holds for you.

[qigonger in reply to Beachgirl32]

Thanks, Beachgirl 32....I would have help whenever I start.

[bbbjsanders]

Truthfully it doesn't sound like you are a good candidate for peritoneal dialysis. You have to have so much energy. I'm 78 next month and it is really hard unless you have help and a bathroom next to your bedroom. I have to life these 10 pound drains bags out every morning and I'm exhausted by the time I'm done. But if you have someone in the home helping you, you may be okay. Personally, I wish I had more information on how hard being on a machine for 11 hours every single day would be=also the extra hours for sanitizing and cleaning up. It is so time consuming.And my hands hurt all the time from all the clamping and snaping the drain bags open in order to move them. It's a lot! I wish you the best whichever way you decide to go, but do some research. I wish I had known more. People act like this is the gentler, easier way to go but it's not.

[qigonger in reply to bbbjsanders]

Thank you, and yes, I would have help.

[MagicNoon]

PD is hard. I am 74 years old and have been on computer assisted PD for a year. I do the PD myself with no assistance. The most difficult part for me is the depression that accompanies ESKD. I also am dealing with anger from the chaos that my clinic is in. They are encouraging more and more folks to opt for PD. Telephone messages and questions do not get answered until my monthly visit with the nurse. My nephrologist sees me at the clinic once a month as well. The visits are assigned with little flexibility, but they call about a week ahead to schedule. I wish I had realized how difficult PD would be to do on my own. PD is relentless. No days off and no short cuts. Lots of cleaning with bleach is just the beginning.

I need to add heparin to the fluid to prevent fibrin formation, this would be difficult with Parkinsons. I am attached to 15 feet of tubing when doing PD. When walking to the bathroom, I need to be careful not to trip in the tubing. All of this is not easy, but for me it's much easier to be in control of my treatment. Some days are so difficult, but overall, I feel much better on PD. No more nausea or itchy skin. You will need to schedule intensive training after cath insertion that takes about 2 weeks. I had two home visits by the training nurse to be sure everything was set up correctly before starting home PD. You will be responsible for ordering supplies. You need to be home to receive the delivery of supplies. I am on only two 16oz bottles of water/fluid a day. That's difficult for me. On PD days I don't eat solid food after 4PM. Nobody told me about the P binders....lots of abdominal gas, but my P is under control. taking them daily Potassium is an ongoing problem for me as it's usually a bit high. I also strictly control my salt intake. Too much salt and I gain 3 KG+ in a day. Weight, BP and temp measured before and after PD, twice a day. All this takes about 10 hours each PD day.

It's not easy, but it is the only choice for me at this moment in my life. Please get a much information as you can accumulate. Watch the videos on Youtube and then make your own individual choice. It's a difficult choice but must be personal to you. Tour a clinic and see folks on Hemo at the clinic. Maybe Home Hemo would work best for you? It's your choice but please make it with as much information as you can gather. We all walk our own path in life, one day at a time, as best as we can. I know you will make the best choice for you.

[qigonger in reply to MagicNoon]

Thank you, MagicNoon. Your response was what I assumed the experience would be....difficult, but then it is a way to put off being at the end of one's life....and that's depressing, isn't it? I've been dealing with my mortality a lot because of it.

[Bearmarie]

do not know if you have a 'helper' with you or you live alone. My husband was on PD for 3 years. I was the one who carried the bags did the set up, connected him, helped him when the machine would alarm. the bags are 5-10 pounds when full- do not know if you have trouble lifting things. The machine we had was by Baxter (home pro). It was fairly idiot proof but if you shake it may be hard to put the cassette in the holder. As far as being on Miralax, they do want you to have regular bowel movements. I was told PD also stands for 'poop daily'.

[qigonger]

Yes, I would have help. Thanks for your reply....I like that PD joke!

[pd_user]

We are in Ontario Canada. My wife,78 , started CAPD at home March 2024. This is a manual exchange without cycler. She has to do it 4 times a day (7 am, noon, 6 pm and 11 pm). Yes, they want you to poop daily. CAPD has no machine to setup. She uses a 2 liter bag. No heavy things to move and no tubing's on the floor. Yes, it is some interruption on her daily life. We are retired. All we have to do is get use to the routine. It takes about 30-35 minutes for the whole process. 5 minutes for the setup, 15 minutes for the drain ，5 minutes for the fill and 5 minutes for clean up. With the TV on, 30 minutes is gone in no time. There were some body adjustments (itchyness, body rash, nausea...) that she had to overcome at the beginning because the chemical balance, such as calcium, potassium, phosephate ..were changing. But the overall experience has been acceptable. We had done two car trips to US. The first one was 5 days as a tester. The second one was 10 days. We rented a Van so that we can carry the medical supplies with us.