Dialysis decision

Posted by ldrlaw @ldrlaw, Sep 8 2:37pm

In all likelihood, my husband is going to have to go on dialysis soon. Are there any participants who are on dialysis and can share which type they're receiving, pros and cons? Our little place in AZ is very remote so traveling back and forth will not work – at least as far as I'm concerned. Currently in WI.

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Hello @ldrlaw
I can understand your reaching out on behalf of your husband's upcoming dialysis. On Connect there is a discussion on dialysis. Here is the link to that discussion,
– Hemodialysis at home, concerned about leg cramping & numbness https://connect.mayoclinic.org/discussion/hemodialysis/

Fellow members like @xottawan @stevewyatt @pegalini @mikek206, and @gingerw may have some additional experiences and tips to share.

Has your husband's doctor discussed the type of dialysis your husband will need? Is home dialysis a possibility?

REPLY

I watched my 82 yr-old mother-in-law undertake dialysis after she had insisted that she did not wish to do so.
But while in hospital with a serious infection, her renal function quickly deteriorated, and she allowed her doctors to begin dialysis, which rapidly cleared her systemic symptoms. (As a young intern before the era of dialysis, I saw the profound effects of terminal renal failure, then called "uremia." Dialyis changed everything!).
She recovered from the acute situation and embarked on 6 years of dialysis, three times weekly, until her death from GI bleeding, perforated diverticulitis and post-operative sepsis. Dialysis was stopped only when her death became inevitable. That was twenty years ago. Now, at the age of 90 and with Stage III CKD (no symptoms), I wonder if I would want to be tied to a dialysis machine should "uremia" make its presence felt.

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@ldrlaw Kidney disease, as you know, can sneak up on us, or suddenly appear on our doorstep. Typically, once a person's eGFR is about 20%, our doctor may start discussing the possibility of dialysis. There are several factors involved in the decision for what method to use, and speaking with the doctor will help answer specific questions to make a selection easier. I have added a link to what the National Kidney Foundation has to say about dialysis as a treatment for CKD. Of course, I will answer any questions you pose to me, as best I can!

In my case, I had a arterial venous fistula placed in my wrist in December 2021, as back-up access if there is a problem, and had a peritoneal catheter placed 8/1/2022. Next week I start PD dialysis. I live 2 hours away, each way, from my dialysis center. My goal is to do dialysis at home. I will be honest with you, home dialysis is not for everyone, regardless whether it is peritoneal or hemodialysis. The patient is responsible for a lot, and frankly, not everyone wants to be in that position. Having a care partner helps. My husband was on home dialysis but at that time lived in a very populated area, with medical facilities nearby. Driving distance/available ambulance service is definitely a factor if you choose to go it at home. A couple who lives nearby chose to move down into a much bigger city due to his dialysis, so they wouldn't be heading in to town three times a week in the winter.

As I researched dialysis options, for my situation, it was clear that being able to do peritoneal dialysis would be best for keeping my body on the most even keel possible, and mimicing what natural kidneys do, filtering toxins everyday. I am also on chemo for a blood cancer, and my oncologist agrees daily dialysis is best for me.

You say you have a little place in Arizona, but are currently in Wisconsin? Do you winter in Arizona, or are you moving there?
https://www.kidney.org/atoz/atozTopic_Dialysis
Ginger

REPLY
@xottawan

I watched my 82 yr-old mother-in-law undertake dialysis after she had insisted that she did not wish to do so.
But while in hospital with a serious infection, her renal function quickly deteriorated, and she allowed her doctors to begin dialysis, which rapidly cleared her systemic symptoms. (As a young intern before the era of dialysis, I saw the profound effects of terminal renal failure, then called "uremia." Dialyis changed everything!).
She recovered from the acute situation and embarked on 6 years of dialysis, three times weekly, until her death from GI bleeding, perforated diverticulitis and post-operative sepsis. Dialysis was stopped only when her death became inevitable. That was twenty years ago. Now, at the age of 90 and with Stage III CKD (no symptoms), I wonder if I would want to be tied to a dialysis machine should "uremia" make its presence felt.

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@xottawan What an interesting perspective you have given this! I have been told that there are so many advances in the world of kidney health maintenance, and even 5-10 years ago things have made dramatic progress. Seeing the differences of 20 years ago with your mother-in-law and even before back that to your intern days, must be astounding.

Very glad to hear you have no symptoms of your Stage III CKD. Has the cause been determined?
Ginger

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I had a long response written, but lost it when I had to take a phone call!

Short answer to your question: no. Probably hypertension–that was considered normal in the past (not so today) but now I'm on a low dose of hydrochlorothiazide and BP is normal. There has been no aggressive diagnostic effort, probably because of my advanced age.

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@xottawan

I had a long response written, but lost it when I had to take a phone call!

Short answer to your question: no. Probably hypertension–that was considered normal in the past (not so today) but now I'm on a low dose of hydrochlorothiazide and BP is normal. There has been no aggressive diagnostic effort, probably because of my advanced age.

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@xottawan As we age, our native organs are busy aging, also! And, kidneys do a lot to keep us healthy. If we end up taking medications, that can contribute to a decline in function somewhat, also. Maintaining good blood pressure and health contributes to a longer life. The two top causes of chronic kidney disease are still considered to be uncontrolled high blood pressure, and diabetes.

I often recall my father, who passed at age 96, telling me his mind was as sharp as ever, but his body had started to get tired. He drove until he was 93 [although his depth perception was really wonky!], and he couldn't hear a thing. But yep, his mind was very sharp!
Ginger

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@hopeful33250

Hello @ldrlaw
I can understand your reaching out on behalf of your husband's upcoming dialysis. On Connect there is a discussion on dialysis. Here is the link to that discussion,
– Hemodialysis at home, concerned about leg cramping & numbness https://connect.mayoclinic.org/discussion/hemodialysis/

Fellow members like @xottawan @stevewyatt @pegalini @mikek206, and @gingerw may have some additional experiences and tips to share.

Has your husband's doctor discussed the type of dialysis your husband will need? Is home dialysis a possibility?

Jump to this post

Thanks for providing the link which I watched. Home dialysis does seem like a possibility. Chuck told the doctor that he's interested in hemodialysis, not peritoneal but I'm not sure that he's really explored all of the ramifications so I want to study up on it a bit.

REPLY
@gingerw

@ldrlaw Kidney disease, as you know, can sneak up on us, or suddenly appear on our doorstep. Typically, once a person's eGFR is about 20%, our doctor may start discussing the possibility of dialysis. There are several factors involved in the decision for what method to use, and speaking with the doctor will help answer specific questions to make a selection easier. I have added a link to what the National Kidney Foundation has to say about dialysis as a treatment for CKD. Of course, I will answer any questions you pose to me, as best I can!

In my case, I had a arterial venous fistula placed in my wrist in December 2021, as back-up access if there is a problem, and had a peritoneal catheter placed 8/1/2022. Next week I start PD dialysis. I live 2 hours away, each way, from my dialysis center. My goal is to do dialysis at home. I will be honest with you, home dialysis is not for everyone, regardless whether it is peritoneal or hemodialysis. The patient is responsible for a lot, and frankly, not everyone wants to be in that position. Having a care partner helps. My husband was on home dialysis but at that time lived in a very populated area, with medical facilities nearby. Driving distance/available ambulance service is definitely a factor if you choose to go it at home. A couple who lives nearby chose to move down into a much bigger city due to his dialysis, so they wouldn't be heading in to town three times a week in the winter.

As I researched dialysis options, for my situation, it was clear that being able to do peritoneal dialysis would be best for keeping my body on the most even keel possible, and mimicing what natural kidneys do, filtering toxins everyday. I am also on chemo for a blood cancer, and my oncologist agrees daily dialysis is best for me.

You say you have a little place in Arizona, but are currently in Wisconsin? Do you winter in Arizona, or are you moving there?
https://www.kidney.org/atoz/atozTopic_Dialysis
Ginger

Jump to this post

Hi Ginger – thanks for sharing this information. Our little home in AZ ("the bunker") is off-grid, 4 1/2 miles from pavement. We rely on solar with backup generator. I'm not mechanically inclined and there always seems to be something that needs tweeking. I have been telling my husband for years that when we got frailer, we'd have to be out of there. We have a big, beautiful home in WI with all of the conveniences but he likes the desert and doesn't want to leave. I know at some point soon I'm going to have to put my foot down and am dreading it. I'm glad I found a psychologist that I really like – think it helps.
My husband commented on my memory so many times I went through Mayo's 3 hour dementia testing – so now I know I'm good there. Because I owned/ran/was a caregiver at a small group home for the frail elderly, I think I'll be able to handle being a dialysis partner though it feels like I'm facing a long prison sentence as we won't be able to travel and do some of the things I want to do in my own remaining years.

REPLY
@hopeful33250

Hello @ldrlaw
I can understand your reaching out on behalf of your husband's upcoming dialysis. On Connect there is a discussion on dialysis. Here is the link to that discussion,
– Hemodialysis at home, concerned about leg cramping & numbness https://connect.mayoclinic.org/discussion/hemodialysis/

Fellow members like @xottawan @stevewyatt @pegalini @mikek206, and @gingerw may have some additional experiences and tips to share.

Has your husband's doctor discussed the type of dialysis your husband will need? Is home dialysis a possibility?

Jump to this post

@ldrlaw, I, too, have been on dialysis when my CKD went from Stage III to Stage V suddenly after a severe case of shingles – eGFR dropped from over 30 to 14. Because it was so sudden there wasn't time for a fistula so a central venous catheter (going to the heart) was placed and I went on the Handi van to the dialysis clinic here in my town 3 times a week.

Dialysis day really wiped me out and I came straight home, ate whatever was handy, and went to bed. The next day I felt fairly well and was able to do household tasks, personal hygiene, etc. The day after that was ok as well until evening, when I suspected the toxins were building up.

Prior to all this, I had switched to a vegetarian diet – almost vegan but I included free-range eggs in my meal plans (for the protein) and started looking up nutritional values for various foods and ingredients using the USDA website as a primary resource. This led to developing kidney-friendly vegetarian recipes which in turn resulted in my first two recipe collections.

While on dialysis, a fistula was placed but it failed. Then an av graft was attempted in my left forearm but it also failed. But an av graft in my upper left arm is still patent after two+years but has not been used because I was able to stop dialysis about six months after it started. I credit good medical management and faithfully following my diet.

It has been two years since I had dialysis. If I needed to do it again, I probably would for awhile, assuming the av graft remains usable. My decision whether to go back on dialysis will be based on life quality considerations. I'm much weaker now than I was then due to worsening diabetes, ongoing CHF and COPD, and a new diagnosis of gastroparesis and probably could not manage home dialysis (and live alone) so would elect hemodialysis at the local clinic.

With GP I now have two or three "good" days a week (the other four range from yukky to miserable) and currently am able to tolerate that. Adding dialysis and its concomitant fatigue might reduce the number of comfortable days. I won't know if it's worth it until that happens.

The other day my Neph told me I have greatly contributed to my own (and others') welfare with the research and the recipes and my renal diet because many people might not have been able to do the research and develop a diet plan and many would have thrown up their hands and decided to eat whatever they wanted even if it hastened death.

The reason I'm sharing all this is to say that sometimes a person might want to weigh the benefits of dialysis in terms of quality of life. If someone on dialysis is miserable most of the time s/he might elect to stop dialysis in favor of palliative care and comfort measures.

Whatever you and yours decide, please know I'm in your corner!

REPLY
@kamama94

@ldrlaw, I, too, have been on dialysis when my CKD went from Stage III to Stage V suddenly after a severe case of shingles – eGFR dropped from over 30 to 14. Because it was so sudden there wasn't time for a fistula so a central venous catheter (going to the heart) was placed and I went on the Handi van to the dialysis clinic here in my town 3 times a week.

Dialysis day really wiped me out and I came straight home, ate whatever was handy, and went to bed. The next day I felt fairly well and was able to do household tasks, personal hygiene, etc. The day after that was ok as well until evening, when I suspected the toxins were building up.

Prior to all this, I had switched to a vegetarian diet – almost vegan but I included free-range eggs in my meal plans (for the protein) and started looking up nutritional values for various foods and ingredients using the USDA website as a primary resource. This led to developing kidney-friendly vegetarian recipes which in turn resulted in my first two recipe collections.

While on dialysis, a fistula was placed but it failed. Then an av graft was attempted in my left forearm but it also failed. But an av graft in my upper left arm is still patent after two+years but has not been used because I was able to stop dialysis about six months after it started. I credit good medical management and faithfully following my diet.

It has been two years since I had dialysis. If I needed to do it again, I probably would for awhile, assuming the av graft remains usable. My decision whether to go back on dialysis will be based on life quality considerations. I'm much weaker now than I was then due to worsening diabetes, ongoing CHF and COPD, and a new diagnosis of gastroparesis and probably could not manage home dialysis (and live alone) so would elect hemodialysis at the local clinic.

With GP I now have two or three "good" days a week (the other four range from yukky to miserable) and currently am able to tolerate that. Adding dialysis and its concomitant fatigue might reduce the number of comfortable days. I won't know if it's worth it until that happens.

The other day my Neph told me I have greatly contributed to my own (and others') welfare with the research and the recipes and my renal diet because many people might not have been able to do the research and develop a diet plan and many would have thrown up their hands and decided to eat whatever they wanted even if it hastened death.

The reason I'm sharing all this is to say that sometimes a person might want to weigh the benefits of dialysis in terms of quality of life. If someone on dialysis is miserable most of the time s/he might elect to stop dialysis in favor of palliative care and comfort measures.

Whatever you and yours decide, please know I'm in your corner!

Jump to this post

Thank you so much for your support. I can feel it and I'm right there for you too! If you ever need to communicate privately, please send me a private message.

REPLY
@ldrlaw

Thank you so much for your support. I can feel it and I'm right there for you too! If you ever need to communicate privately, please send me a private message.

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@ldrlaw, please note that I removed your personal email from your message as this is a public forum. For your safety, we recommend using the secure private message function to exchange personal contact information.

I'd also like to point out the benefit of continuing to share in the forum. Sharing experiences helps many and the impact goes beyond even those who post messages, helps those who prefer only to read. 🙂

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