At-home peritoneal dialysis: Things to consider

My husband, Chuck, has been on peritoneal dialysis at home for about a year. We're going to be moving to a continuing care community once the construction of our unit is completed. One of my friends recently asked about our dialysis experience. I thought my comments to her might be helpful to others considering at home treatment.

Chuck does his dialysis through DaVita. If you decide to do dialysis at home, I have the following comments/suggestions:

Try to get on DaVita's portal right away. Their communications aren't always the best and if you don't go with your spouse to his appointments, you might not always get the correct information. I like to see things in writing.

Our supplies come monthly from Baxter. They tell you when they're coming (whether it's convenient or not) a couple of days ahead - giving you a 2 hr. window. The drivers actually bring in the items on a dolly. We have asked to never send anything via UPS because they leave the items, which are sometimes to heavy for us to manage, outside. We've had frozen solutions as a result. They can be thawed. What the solution doesn't tolerate is high heat.

Get a bedside commode to set near the bed so you aren't having to deal with tubing on the way to the bathroom in the middle of the night.

When we first started, they sent 101 boxes. It takes up an area probably at least 10' x 3'. I'm thinking that boxes will have to go in our second bedroom when we move to a much smaller home in a retirement community. Be judicious in what you order. Some of our boxes will soon be outdated and we'll be able to dump them. Other than the terrible wasteful aspects, I'll be glad of that except that the opening of all of the solution bags and draining into our shower will be a pain. We have had our teen helper deal with that on occasion.

The night effluent bag can be pretty heavy. We purchased a small dolly to take it from bedside to the shower.

Chuck bought a really nice 3-shelf stainless steel table for all of his equipment at bedside. It holds the dialysis machine, bags, meds, solutions, dressing, glass/bottle of water, phone and hearing aid container, etc. He uses magnetic hooks on it to organize long tubing. A little expensive but works very well.

If the dialysis machine is plugged into an outlet that's controlled by a switch, tape the switch on so you don't turn the machine off by mistake.

Keep the large manual, which includes the helpline telephone number, near the bed in case you run into a glitch.

The solutions used to sterilize the junctures in the tubing can bleach/stain the carpets. There are also going to be times when solution leaks. I bought an extra plastic office floor protector for our carpeting but Chuck felt it was too slippery....so we have stains. Probably could have put some kind of adhesive strips on it to prevent that. Our new place won't have carpeting in the master bedroom - but I'm afraid that our Cal-King bed plus the equipment is going to be too large for the room.

Keep an alphabetical list of medications with prescribed dosage and time of administration in excel or something like that. Below that list, I've kept a log of when medications were added/deleted/changed and who changed it. This is especially helpful when not all of your doctors are in the same service or share a portal. I bet Chuck's nefidipine has been changed at least 5 times.

Be prepared to deal with a LOT of empty boxes. Our trash pickup requires that they be flattened and tied together in manageable bundles. I tried to find someone on Nextdoor who could use them but they're smaller than most people want for moving purposes. Between the boxes and spent tubing, there's a lot of medical waste.

Trying to stay on track with all of this sometimes seems like a full-time job to me.