Follow
Share
This question has been closed for answers. Ask a New Question.
Your Doctor and your Dialysis Nurses will guide you in finding information and support groups. You will have many questions and this is no easy education. There are also sites on Facebook, on youtube, and other forums for you to explore. Start with:
https://www.dpcedcenter.org/news-events/dpc-support-group
and
www.dialysispatient.org
and
https://www.davita.com/education/ckd-life/support/support-groups-for-people-living-with-kidney-disease
If you have had kidney disease long enough to progress to needing dialysis then there is quite a lot you already know. I wish you good luck. I hope others here who have direct experience either getting dialysis or caring for a loved one who currently gets dialysis will give you some other sites to explore and learn from.
Helpful Answer (1)
Report

You don't mention if you're going to have hemodialysis or peritoneal dialysis (PD). I called a friend who knows very little about hemo but has been on PD for a couple of years. Here's what I learned.

Expect what you know. Expect the unexpected.

Expected: PD gives you 7 days of steady at-home 12 hr overnight dialysis. Hemo at a center 3x/week means you might have more ups and downs with energy as your last hemo wears off.
Unexpected: The PD schedule gets mucked up when the machine acts up and the alarm goes off at 3am or the tube gets loose and fluid's dripping through the ceiling.

Expected: You'll get a monthly delivery of boxes
Unexpected: It's 33 heavy boxes to schlep & store. (But you'll be a hero to everyone who needs a supply of matching double walled storage boxes).

Expected: A port in your gut.
Unexpected: It's intrusive. You cannot NOT see it. You'll modify sleeping habits to accommodate it. Before you decide to go PD vs hemo, "look at photos."

Expected: With PD, you can't swim in anything but saltwater or your own pool
Unexpected: Power outages interrupt PD but my friend skips it once in a while if there's no alternative and hasn't had a problem.

Expected: There's the inevitable transition but things normalize - and sort of do.
Unexpected: "Normal" means continual tweaks and fine tuning (like your levels are off so you tweak the diet)

Expected: Your schedule won't revolve around going to a dialysis center where people know you.
Unexpected: There's no PD group support so it helps to be stubborn and self-advocate.

Expected: Infections are a real concern.
Unexpected: No infections :) Good things happen too, knock wood....

The doctor labeled my friend a poster child for PD because there haven't been any health issues - just learning, adapting and inconveniences. One last thought from my friend, who rarely talks about PD and couches it in "I had a rough night" or "I have to run to get tests" because "People don't like to hear about illness, so I don't talk about it."

You have a welcoming forum here, but if you find you need a place to work out this dialysis thing, you might try journaling. Another friend, Fern Pessin, became a caregiver for her parents and kept a journal of what she did. People kept asking how she learned so much and could she share it. She wrote a book called "I'll Be There For You" and has it on Amazon. Maybe you have a story to tell too.
Helpful Answer (7)
Report
AlvaDeer Jun 2021
What a thorough response, and I love the expected/unexpected, as that is so much the case. How kind you are to take all the time to post this out. Beautifully done!
(4)
Report
Talking to a social work care manager friend and mentioned your question. She had a critical insight when comparing dialysis center Hemo vs home PD: what kind of personality do you have?

If you want to control your dialysis, home PD home let’s you decide when to start each day. Since it’s designed to be overnight, your days are your own. You will arrange trips to get tests.

If you want to be hands-off and delegate the dialysis to a care center, they take care of the dialysis and tests but you have to go 3x a week and stay for 4 hours (rigid schedule, not it’s raining or icy) and you may not get the best time slots.

Because hemo is not daily, toxins build between visits. Even though dialysis center machines are super efficient, it’s physically draining to get the toxins out of your body.

PD is 12 hrs each day but seems to keep toxins from building up as much as hemo, so it’s less intense and not as physically draining.

By the way, the PD port tube tethers to the machine and there’s a tube from your machine (by the bed) to a bathroom drain (or a bucket?)

good luck.
Helpful Answer (0)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter