Does anyone know about Home Dialysis? What is it like?

Posted by mikek206 @mikek206, Oct 3, 2021

I think it's getting closer to me getting Dialysis. Is the procedure an outpatient or overnight? Also, does Medicare cover this procedure? Does anyone know about this Home Dialysis procedure?

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@mikek206 Like you, I am getting closer to starting dialysis, also! There is a lot to learn about it all, and your choices.

Has your nephrologist talked to you about the options, either peritoneal, in-center hemodialysis, or home hemodialysis? Each one has pluses and minuses, and you may qualify for peritoneal if you haven't had excessive abdominal surgeries in the past.

https://www.mayoclinic.org/tests-procedures/peritoneal-dialysis/about/pac-20384725 talks to you about peritoneal dialysis, which is what my husband had for 5.5 years before his transplant. His argument was that the toxins in the blood are kept more level because they are removed every day versus in-center dialysis which is 3 times a week. Once a month he checked in with his nurse at the in-center unit, to have bloodwork done and have his port examined. When I face dialysis myself, I hope to go this route.

On the other hand, is hemodialysis https://www.mayoclinic.org/tests-procedures/hemodialysis/about/pac-20384824 This article also includes information on home hemodialysis.

Here are a couple of threads from this discussion group, started a couple years ago, but full of information and experiences: https://connect.mayoclinic.org/discussion/dialysis/ and
https://connect.mayoclinic.org/discussion/support-for-dialysis-patients/
While we wait for others to chime in with their thoughts, I think of @kamama94 and her story

Yes, Medicare covers a lot of things related to ESRD including dialysis https://www.medicare.gov/coverage/dialysis-services-supplies
And, also check with your individual insurance for their coverage. My husband continued working full-time while on dialysis, and has Kaiser-Permanente insurance that covered everything.
Ginger

REPLY

@gingerw, I think of you every day and am sending you caring vibes. Am not back on dialysis yet. Keyword is yet. eGFR up to 20 from 19, very eensy drop in BUN and Creatinine. Mg a bit high (common with CKD) so had to switch from Dulcolax to Colace and stop eating leafy greens completely even though I had been taking only 1/4 servings and only twice a week. Neph appointment this coming Tues and don't expect her to be concerned about the Mg. CPAP wearing out so not feeling very peppy since not getting good sleep but primary is ordering new CPAP and new power chair. Once again want to caution everyone to constantly read labels, nutritional amounts have been changing a lot lately and there's wide variation from brand to brand. Keep me posted re your kidney journey, I care!

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@kamama94

@gingerw, I think of you every day and am sending you caring vibes. Am not back on dialysis yet. Keyword is yet. eGFR up to 20 from 19, very eensy drop in BUN and Creatinine. Mg a bit high (common with CKD) so had to switch from Dulcolax to Colace and stop eating leafy greens completely even though I had been taking only 1/4 servings and only twice a week. Neph appointment this coming Tues and don't expect her to be concerned about the Mg. CPAP wearing out so not feeling very peppy since not getting good sleep but primary is ordering new CPAP and new power chair. Once again want to caution everyone to constantly read labels, nutritional amounts have been changing a lot lately and there's wide variation from brand to brand. Keep me posted re your kidney journey, I care!

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@kamama94 Thank you so much. My last bloodwork this past Thurs shows me at 14%. This coming Fri is my nephrology appt, and so far they have not broached dialysis. About 2 months ago I had a telephonic with the Physician's Asst, and i brought it up. Seeing that I am med-compliant, they are supportive for me to try and qualify for peritoneal dialysis. My husband mentioned this morning we need to figure out where we will put the supplies here in this house.

I know you keep close tabs on what you eat, your lifestyle, and how to keep your eGFR up. You have been such a great source of information for those of us on the kidney disease train!
Ginger

REPLY
@gingerw

@mikek206 Like you, I am getting closer to starting dialysis, also! There is a lot to learn about it all, and your choices.

Has your nephrologist talked to you about the options, either peritoneal, in-center hemodialysis, or home hemodialysis? Each one has pluses and minuses, and you may qualify for peritoneal if you haven't had excessive abdominal surgeries in the past.

https://www.mayoclinic.org/tests-procedures/peritoneal-dialysis/about/pac-20384725 talks to you about peritoneal dialysis, which is what my husband had for 5.5 years before his transplant. His argument was that the toxins in the blood are kept more level because they are removed every day versus in-center dialysis which is 3 times a week. Once a month he checked in with his nurse at the in-center unit, to have bloodwork done and have his port examined. When I face dialysis myself, I hope to go this route.

On the other hand, is hemodialysis https://www.mayoclinic.org/tests-procedures/hemodialysis/about/pac-20384824 This article also includes information on home hemodialysis.

Here are a couple of threads from this discussion group, started a couple years ago, but full of information and experiences: https://connect.mayoclinic.org/discussion/dialysis/ and
https://connect.mayoclinic.org/discussion/support-for-dialysis-patients/
While we wait for others to chime in with their thoughts, I think of @kamama94 and her story

Yes, Medicare covers a lot of things related to ESRD including dialysis https://www.medicare.gov/coverage/dialysis-services-supplies
And, also check with your individual insurance for their coverage. My husband continued working full-time while on dialysis, and has Kaiser-Permanente insurance that covered everything.
Ginger

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Sorry to say Yes I have had two operations in my midsection…so it seems like my only option is regular Dialysis…I fired my Doctor because his young secretary hung up on me…he never called me back to see why I did not come in…It seems to me he does not care…only show him the money…

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@mikek206

Sorry to say Yes I have had two operations in my midsection…so it seems like my only option is regular Dialysis…I fired my Doctor because his young secretary hung up on me…he never called me back to see why I did not come in…It seems to me he does not care…only show him the money…

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@mikek206 Don't rule out peritoneal dialysis just yet! My husband had had an umbilical hernia operation and was still able to do PD for 5.5 years before transplant! Make sure you have a nephrologist you can trust and rely on, that is critical. If there are other health issues going on, remember your entire team will be needing to work together, and communicatin is critical. For example, my nephrology practice is not someone I would have chosen, but my oncologist works closely with them, recommended them, so that is where I go. Sometimes their staff lags behind, and info doesn't get relayed, but I talk very frankly to them about my concerns.
Ginger

REPLY

A few years back I had an Ostomp put in…just 2 years ago I had to move it and they told me I might have to replace my lining if it has to be moved again. So I do not think it will work…sorry to say…thank you for your help in that matter…

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@mikek206

A few years back I had an Ostomp put in…just 2 years ago I had to move it and they told me I might have to replace my lining if it has to be moved again. So I do not think it will work…sorry to say…thank you for your help in that matter…

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@mikek206 There is also home hemodialysis that can be done. Again, check with your nephrology team to see the opportunities for that in your area.
Ginger

REPLY

Thank You, Ginger, Will Check It Out…

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