I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: rcjordan on October 17, 2019, 02:32:22 PM
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Backstory: A few weeks ago, due to a screw-up with a replacement cycler delivery, I had to skip 3 sessions. I did fine, no detrimental effects during or after. Labs 10-12 days afterward came in within range. Prior to this, my urine output had been dwindling --down to 800ml from 1.3L. Being off session seemed to kick-start my output, I even had one 1.7L day. So. I went researching in order to have something authoritative to present to my neph when I tell him I want to experiment. Found these:
Incremental approach to hemodialysis: twice a week, or once weekly hemodialysis combined with low-protein low-phosphorus diet?. - PubMed - NCBI
https://www.ncbi.nlm.nih.gov/pubmed/26845205
Incremental haemodialysis | Oxford Academic
https://academic.oup.com/ndt/article/30/10/1639/2337128
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While I like the idea of doing ANYTHING just to get me down to twice-weekly dialysis, the reality is that I need to consume a lot of protein to give me enough stamina to work full time.
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Given my general good health, long-maintained dry weight, and that my labs have been in-range for the last year or more, my neph has approved an experimental "dialysis fasting" by skipping 3 consecutive sessions. Make no mistake, he had a lot of concerns but he was also hopeful. I had to assume all liability, of course. His biggest concern was potassium. He added 2 labs to bracket the 6 days that I'll be off.
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rcjordan that's good news, I'm glad your neph is willing to test it.
I was always wondering the same thing as I could travel and skip a day with no problem. Since I never stopped peeing I didn't the weight gain to trigger clear thoughts of need of dialysis when I had gaps. I never tested it but I was always wondering if twice per week would be enough for me.
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My remaining kidney only functions around 3% and my output is currently around 1.1L/day, so skipping 3 sessions is pushing the envelope. I'll have to shift away from protein a bit and *maybe* cut back on my usual quart of coffee each morning. That said, being able to have almost a week off the cycler once every couple of months would be a huge increase in freedom. I told the neph I was willing to trade toxins for time off.
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OK. I completed the first test run. I decided to really make it tougher by traveling out-of-state over the duration. This made it harder to keep my diet, as some restaurant meals would be involved. We carried some diet-friendly foods, bought some at local grocery store, and ate some meals at restaurants (4 dinners, 2 lunches). I didn't take any extra binders, just calcium acetate. Though I had been cleared to skip 3 sessions, I cut it back to two because everyone was concerned about potassium from the git-go and I started having short episodes of mild queasiness the day after missing the 2nd session.
The session 'before' travel was Nov 5. The next 'after' session was Nov 11. The neph wanted labs before & after. Here are the numbers, before/after:
Potassium 5.0 / 5.7
Phosphorous 4.7 / 5.1
Calcium 8.9 / 8.9
Albumin 4.7 / 4.3
Bun 59 / 114
Creatinine 8.84 / 11.03
Liquid intake was my usual 1.2L every day except one when I increased it to 1.5L because of exercise. Urine output was consistently 1.1-1.2L before but seemed to increase slightly while traveling. I had zero edema during the trip, or at least none that I could see in my legs or ankles. The day after my 'after' session, my output was up to 1.5L, the next day (yesterday) it was 1.9L. I raised my liquid intake by 250 ml to partially cover the increase.
That's about all I know now, as I have not yet met with the doc to discuss. However, it looks promising --for both increased freedom and perhaps preserving residual function. I declined a potassium blocker this time. In hindsight, it would have been smart to have available. I'm also going to be looking for ways to eliminate or postpone the occasional queasiness.
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I had clinic today and after going over all 3 labs this month, the neph cleared me to do it "no more than once a month." Woo hoo!
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Congrats rcjordan. I was okayed to have 1 Wesnessday a month off. No residual kidney function, cos no kidneys. Just a strict diet and only drink espresso cups of anything.
Enjoy
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I just bought a potassium binder (patiromer) to use on my days off, particularly while eating restaurant meals.