I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: NCspinner on April 16, 2022, 10:14:01 AM
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My husband's nephrologist is really pushing nocturnal home hemo as a solution for his persistently high phosphorus. As the "care partner," and someone who is NOT a night person and hates the thought of starting dialysis in the evening, I have so far refused to consider this. Of course --aren't we supposed to be willing to do just ANYTHING??-- this makes me feel guilty, which makes me feel angry. We currently do 4 days a week of home hemo, about 3 1/2 hours per treatment. It dominates our life and we've been doing it since late 2014 while his condition gradually deteriorates. We've had one call from the transplant center at UNC for a kidney that turned out to be unsatisfactory. I am about fed up. Would appreciate hearing from anyone who has done/is doing nocturnal at home. The nephrologist said the longer, slower nocturnal dialysis would clear the phosphorus "like magic" but I don't really trust her--I suspect she just wants to try it--and I see elsewhere online that nocturnal is not the worry-free picnic she describes. Thanks for any input
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Hello NCspinner,
Unfortunately I can't comment on nocturnal home hemo, as I "only" had my treatments at a dialysis-center three times every week for four hours each time and ... I wanted to wish you and your husband good luck and all the best and hopefully you both very soon get surprised by THE call.
Best wishes from Kristina. :grouphug;
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Thanks, Kristina. All good wishes welcome!
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I am currently facing the same dilemma for same reasons. My Dr has suggested that I dialyse for 8 hours, 6 nights a week,!! I do 4 hrs 4 days a week Home hemo. I can't imagine how difficult it may be to try and sleep with machine doing its thing, beeping etc haha ! I too would love to hear from anyone who does or has done this ?
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I tried nocturnal for a while. I did everything myself at the time. Sometimes were great when everything went honkydory. The whole day free. But when an alarm goes of, the whole house wakes up. You have to find your glasses (as I do) to see what you’re doing. I never really slept, just dozed a bit. Some days I had to catch up on sleep.
But I did feel much better sometimes. My bloods were great. Phosphates dropped etc. i don’t remember why I stopped (I suppose I got ill or something ;) ) I remember changing to 5 hours every other day which gave the same blood results, and fitted our lifestyle :angel; more
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Thanks so much for your input, Cassandra. The scenario you describe is kind of what I imagined. It's bad enough when something goes wrong in the daytime but at night...