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At home dialysis - peritoneal: 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 Some of our boxes will soon be outdated and we'll be able to dump them.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.
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That’s very helpful information. My aunt tried this method at home, but it didn’t work out. She now goes 3 days per week to a facility. It seems to involve a lot of work, though certainly has many benefits.
@ldrlaw This is a great post to share some "inside information" as to what we peritoneal dialysis patients go through!
I am on a manual routine, so no machine is used except to heat my bags of fluids up. While you probably have a battery back-up, or your machine shuts down in case of power interruption, then resumes once power is restored, we have configured a deep cycle battery back-up for my heater bag.
Getting your fluids and supplies can be a hassle. I get my fluids from Baxter, and use Fresenius for my supplies. This entails two separate inventory and ordering windows. Keeping a written calendar is helpful for me. With Baxter [nice people, by the way!] you can arrange to be on a 28 day cycle, or 56 day cycle, for supplies. Or even 14 day cycle depending on where you live, your fluid requirements on a daily basis, if your storage area is small.
Consider your dialysis to be a job, except there are no holidays nor any benefits, except for feeling better than if you weren't on it. It's up to you to be compliant with the prescription given to you by the dialysis clinic. Is it a lot of work? Yes, indeed.
For the empty boxes, consider asking your local food bank if they can use them, or ask a gardening club if they are needed for flower beds. Post on freecycle, or your local neighborhood chat on facebook. If they are leaving you, make sure you block out your name and address from the labels. They do make great storage solutions, all being the same size!
I keep a written log of my dialysis that includes daily temp, blood pressure, how much fluid was pulled [ultrafiltration] each session, how long I dwelled the fluids, type of fluid, plus any notes. This along with my daily vitals records go with me to each Dr appointment.
Home dialysis takes a commitment from the patient, and caregiver. I wish you luck in your new unit at the continuing care community!
Ginger
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4 ReactionsI so appreciate your comments. I’m a chronic kidney disease. Patient also and may have to face dialysis in a couple of years. In thinking about that, I’ve already decided that I don’t want to have a home machine because I’m just not good with electronics. Chuck didn’t even really consider doing it manually but he’s an electrical engineer so wasn’t daunted by operating the machine the way I would be. If I had a problem with the machine, I’d probably panic and start pushing every button. there is.
Re the boxes, thanks for the good suggestions.
Because he has other medical issues we’re going to be looking at equipment that will send his readings right to our doctor, including weight, blood pressure, pulse and oxygen saturation. Chuck finally got a Libre continuous glucose monitor and those figures can be pulled up as well. The monitor has been helpful and is a good reminder for him to watch what he eats.
I owned a small group home for the frail elderly for many years so although I don’t have any nursing background, I have familiarity with a lot of caregiving aspects, which I’m very thankful for. Still, at pushing 80, it’s a lot to deal with. Support from a group like this helps. Thank you for all that you do.
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4 Reactions@ldrlaw My husband used a machine for the 5.5 years he was on dialysis before his transplant. Like your hubby he is techy-minded and configured different things. His machine automatically sent info into his dialysis center and doctor. I bet these days there are the new-fangled gadgets that will let the infor be passed along. I do log into my Fresenius account each day and send along my information on the iPad they supplied me.
I had to laugh when I read about panicking if a machine failed! That's what I would probably do, too!
One of the best decisions ever made for this situation: no matter who you speak to, do it with kindness. So many of the patients are frustrated, or confused, or stressed. By showing empathy for those we need to talk to from DaVita/Fresenius/Baxter, thanking them for their time, joking a bit if the conversation warrants it, we become someone that are happy to deal with. You can hear the relief and smile in their voices.
Ginger
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5 ReactionsFor those who chose dialysis at home, would you consider going to a hospital or facility for dialysis? I think about this possibly facing dialysis in the future. I understand if you travel, there are facilities for dialysis in locations you travel to. I’m trying to foresee which option is better for me. Our healthcare system is a 10 minute drive from our house. I realize there is intense training to be sure you understand the procedure.
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2 Reactions@mrainne The type of dialysis where you go to a center is hemodialysis, which uses a fistula or graft in your arm to access an artery and "clean" your blood. It typically is done 3 times a week, about 3-4 hours each session. The procedure is handled by trained nurses and professionals. The patient shows up and sits in the chair, everything is done for them. There are no supplies to deal with at home.
The choice on type of dialysis can be based on many factors. Personal preference, for one. To be considered for peritoneal, a person with no to few abdominal surgeries will probably qualify better, as a catheter is surgically implanted. Peritoneal is done at home, and all responsibilities fall to the patient to accomplish the dialysis, with a nurse available as needed via phone. Multitude of supplies, as @ldrlaw and myself will attest, are delivered and must be stored, on a monthly basis. There are fewer fluid restrictions with peritoneal dialysis, and doing dialysis everyday keeps your body on a more even keel.
From the University of Maryland, here is an article that you might find interesting: https://www.umms.org/ummc/health-services/kidney/dialysis/types#:~:text=Hemodialysis%20is%20ongoing%20dialysis%20(3,the%20abdomen%20(peritoneal%20cavity).
And from the National Kidney Foundation: https://www.kidney.org/kidney-topics/choosing-dialysis-which-type-right-me
Ask at your healthcare system if there is a class available for you to take, explaining the types of dialysis, so they know you are thinking ahead. And, good for you for doing that!
Ginger
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