Just getting started

[PDcaretaker]

I am a caregiver for someone who will start PD at home in the next month. I want to be prepared as much as possible and I do not have full confidence that the dialysis unit is telling me everything I need to know. I have questions that they don't seem to think are important enough to have the answers but I feel we need to be prepared for all contingencies. Yes, I am a planner!

I understand the prescription will determine the amount of discharge fluid, however I am trying to learn what the max amount of bag liquid that is used so I have a receptacle large enough for all the discharge liquid; a bathroom is not close.

I would like to know what size back up power would be needed to run his machine if we loose power during the night.

How are folks warming the bags at home? Has anyone used chemical heat for power outages?

Thanks

[Darlenia]

I was a caregiver to my husband, who was initially on HD and then transitioned to PD. He received a transplant 3 years ago. PD is easy to work with....you have the option to accompany your loved one to all his training sessions and learn the process with him. This also gives you lots of opportunities to ask questions. I quickly discovered my husband caught on faster than I did, so I stepped away after a few days, leaving the entire process in his hands. Training started with doing a few days of "manuals" and then he was quickly transitioned to using the "cycler", his method of choice.

We soon learned that all cyclers automatically heat the bags so there isn't a need to worry about that. Regarding dialysis waste, the waste drains into a large bag (furnished) for disposal. We recommend placing the drain bag in a large bucket so, in case it breaks, the liquid doesn't wind up on the floor. When my husband received his cycler at our house, he wanted his cycler to drain directly into our commode. (The drain line ran under the toilet seat, so it still could be used. The water level adjusts automatically so there are no overflows.) Since our bathroom was some distance away, he requested an additional drain line to accomplish this. (This took some persistence since this isn't the usual protocol.) We didn't put in "backup power" for power outages. In our region, power outages never last more than a day or night. So our PD nurse told us not to worry about the occasional power outage. Because PD is done daily, missing a night on rare occasions doesn't affect a person very much. She noted people on PD are often forced to do this when traveling by plane and so on. If you need a power back-up, I'm pretty sure a Jackery Explorer 1000 v2 type unit or similar equipment will handle a cycler with nominal expense. Some people resort to doing manuals when blackouts are really lengthy

I discovered that YouTube videos uploaded by real people on PD are exceptionally educational and informative. Although my husband took full control over everything, I knew I could hop on YouTube at anytime and figure it out fast if I needed to do that. Here's an example of one: youtube.com/watch?v=XxjM-Ps...(Not working as expected?) Please keep in mind that there are different techniques depending on the brand/model of cycler that one gets, so look for videos by actual people using your particular machine. It's very calming when you see how easy the process actually is. Hope your path ahead goes smoothly!

[PDcaretaker in reply to Darlenia]

Thank you Darlenia; just didn't think about UTube for a medical procedure. One of the questions I had was if missing a night or doing only a partial night due to a power outage would be a problem. Nice to know that it would not be a critical issue. No one has said anything about a large drain bag so I bought a 5 gal water container to take the waste. Will work for traveling also. So great that y'all were able to get a transplant; not an option for us due to other health issues.

[Darlenia in reply to PDcaretaker]

Glad you're here. That bucket you purchased will work fine. We're a supportive community that's happy to answer any questions you may have. Hugs!

[Motor_city_kitty in reply to PDcaretaker]

We have an Ecoflow power bank that we have used when we lost power for a day. It used about 50 percent of its capacity, so hopefully it won't be needed for more than a couple nights at most.

Husband uses an Amia cycler, and I think it has enough reserve power to complete a treatment if the power goes off while it's running, but it won't let you start without power.

Given the situation with Helene, it's good to be prepared

[mshah46]

I am a PD patient so understand your anxiety. Trust me your PD training is worth and will give you answers for all your questions. Please don't miss any training sessions and start as soon as possible. Life on PD is much better to me off course there is always ups and down but manageable. All prescriptions , solution strengths, medicines adjustments and ordering supplies will property fall in place once PD starts and monthly blood work happens. I would not worry about answer you looking for now but go through training first and read manual. The Most import aspect is to learn to manage protein, phosphorus, potassium, calcium, salt, sugar, vitamin B12 and Vitamin D in your daily life style from food which no one other you can manage efficiently. Walking and daily exercises are blessing to feel energetic.

Both Automated and Manual cycler training will help you to manage power outage situation short to long term. There is solution for everything except waitlist Good luck.