Decisions about dialysis

Posted by angiede2001 @angiede2001, Mar 4, 2017

My husband may refuse dialysis. If I say or do the wrong thing, he will dig his heels in. Not at all knowing how handle this.

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@angiede2001

It would be beginning dialysis, He is a strange critter. He worried about the shunt being put in...like it is the mark of the end times. says maybe he should just go be with Jesus. Pretty well refuses to talk about it. He may come around if I leave him alone. Pretty sure he is scared to death and in denial...he can be mean when he is stressed, so yes stubborn and controlling also 🙂 I read that if you have comorbidities, it really doesn't prolong life anyway...he doesn't have a whole lot...pvcs and controlled high bp. pills that control his cholesterol...obesity. Course, he looks like death warmed over now..prob. the kidneys. I really feel like rt now, I just have to let him make the decision and support him, in whichever. If I push, he won't do it...period.

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Dear @lcamino, I would like to welcome you to Connect. Usually at this part of my welcome, I will say that we are here to share our experiences and to support others. But I really don't need to do that because, @lcamino, you are an example of the highest level sharing and compassion. Your experience, and your willingness to share it, are beyond words. I thank you. You have my deepest sympathy and my highest regards.
I invite you to become a regular member. I hope that we can be of support to you sometime if you need it.
Rosemary

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@momij

Hi Angie,
My experience with dialysis was not a good one and I won't do it again. I had renal failure suddenly from contrast die during a CT scan and an unknown, underlying kidney disease, minimal change disease. I was on dialysis almost 4 months and it made me horribly sick every time (that is not everyone's experience) – until I came to Mayo in Rochester for a second opinion. I dialised there during my visit and my nephrologist, Dr. Latonya Hickson (who I LOVE) made adjustments to the filters and rates (and probably other stuff I don't remember) that made it much more tolerable for me. She then figured out what was wrong, why I wasn't improving, and treated me. I was able to come off dialysis a couple months later. I can't say enough about Dr. Hickson - she is so positive, supportive, competent... I would encourage you to find a doctor that could talk to your husband about the process. Sometimes we need to hear it from an outside source. If you're in Rochester they might let you see the dialysis center - it's very nice and they make you very comfortable. It's such a personal decision and your husband is fortunate to have your support either way, though it must be really tough for you. Happy to talk anytime. Take care.
Momi Jhung

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@momij, I would like to welcome you to Connect. Here we can ask questions without judgment. Here we can support and encourage each other by sharing our experiences. Thank you for sharing. You just jumped right in - I love that!
What an awful thing to have happened to you. Thankfully you made the wise decision to seek a second opinion, at Mayo. And WOW, look at you now. So you have an underlying kidney disease? Is it gone now with the discovery and treatment? Or is it something that is monitored and controlled? I ask that question because in my situation, I had a liver disease, and now it is gone because of my transplant. My boys say I'm nosey!
BTW, I was in Rochester and dialised there, too. Fantastic dialysis clinic!
I invite you to join in any of the discussions that sound interesting to you! I look forward to hearing more from you.
Rosemary

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@momij

Hi Angie,
My experience with dialysis was not a good one and I won't do it again. I had renal failure suddenly from contrast die during a CT scan and an unknown, underlying kidney disease, minimal change disease. I was on dialysis almost 4 months and it made me horribly sick every time (that is not everyone's experience) – until I came to Mayo in Rochester for a second opinion. I dialised there during my visit and my nephrologist, Dr. Latonya Hickson (who I LOVE) made adjustments to the filters and rates (and probably other stuff I don't remember) that made it much more tolerable for me. She then figured out what was wrong, why I wasn't improving, and treated me. I was able to come off dialysis a couple months later. I can't say enough about Dr. Hickson - she is so positive, supportive, competent... I would encourage you to find a doctor that could talk to your husband about the process. Sometimes we need to hear it from an outside source. If you're in Rochester they might let you see the dialysis center - it's very nice and they make you very comfortable. It's such a personal decision and your husband is fortunate to have your support either way, though it must be really tough for you. Happy to talk anytime. Take care.
Momi Jhung

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Hi Rosemary, my minimal change disease is in remission right now though it is still monitored and controlled. My understanding is that it's not uncommon for relapses to occur, and I did have one relapse early on. Unfortunately, the kidney failure seems to have triggered some other autoimmune diseases which have continued to be a real struggle for me. I'm very grateful for all of my doctors at Mayo - not sure where I'd be without them. Take care. Momi

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@angiede2001

It would be beginning dialysis, He is a strange critter. He worried about the shunt being put in...like it is the mark of the end times. says maybe he should just go be with Jesus. Pretty well refuses to talk about it. He may come around if I leave him alone. Pretty sure he is scared to death and in denial...he can be mean when he is stressed, so yes stubborn and controlling also 🙂 I read that if you have comorbidities, it really doesn't prolong life anyway...he doesn't have a whole lot...pvcs and controlled high bp. pills that control his cholesterol...obesity. Course, he looks like death warmed over now..prob. the kidneys. I really feel like rt now, I just have to let him make the decision and support him, in whichever. If I push, he won't do it...period.

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I respect your dad and his decision!

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@jamienolson

@angied2001, I would like to add my Welcome to you and your husband. Mayo Clinic Connect is a great place for you to get information and connect with others that are dealing with dialysis.
May I suggest leaving your post here in the Kidney and Bladder group and also posting in our caregivers group so you can get the support you need while supporting your husband. https://connect.mayoclinic.org/group/caregivers/

I'm tagging fellow members @oohlalalita @jtannen1 and @momij who have been on dialysis. I hope they'll have some insights to share.

While we wait for others to join, here is some information you may be interested in reading on preparing for dialysis found on the Mayo web. http://mayocl.in/2mUyF36

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'Thank you SO much!

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@momij

Hi Angie,
My experience with dialysis was not a good one and I won't do it again. I had renal failure suddenly from contrast die during a CT scan and an unknown, underlying kidney disease, minimal change disease. I was on dialysis almost 4 months and it made me horribly sick every time (that is not everyone's experience) – until I came to Mayo in Rochester for a second opinion. I dialised there during my visit and my nephrologist, Dr. Latonya Hickson (who I LOVE) made adjustments to the filters and rates (and probably other stuff I don't remember) that made it much more tolerable for me. She then figured out what was wrong, why I wasn't improving, and treated me. I was able to come off dialysis a couple months later. I can't say enough about Dr. Hickson - she is so positive, supportive, competent... I would encourage you to find a doctor that could talk to your husband about the process. Sometimes we need to hear it from an outside source. If you're in Rochester they might let you see the dialysis center - it's very nice and they make you very comfortable. It's such a personal decision and your husband is fortunate to have your support either way, though it must be really tough for you. Happy to talk anytime. Take care.
Momi Jhung

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Thank you..I am hopeful that he would feel better, not worse 🙂 🙁 I have no idea about 2nd opinions, etc...first I think we will get thru the decision and see how it goes.

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@momij

Hi Angie,
My experience with dialysis was not a good one and I won't do it again. I had renal failure suddenly from contrast die during a CT scan and an unknown, underlying kidney disease, minimal change disease. I was on dialysis almost 4 months and it made me horribly sick every time (that is not everyone's experience) – until I came to Mayo in Rochester for a second opinion. I dialised there during my visit and my nephrologist, Dr. Latonya Hickson (who I LOVE) made adjustments to the filters and rates (and probably other stuff I don't remember) that made it much more tolerable for me. She then figured out what was wrong, why I wasn't improving, and treated me. I was able to come off dialysis a couple months later. I can't say enough about Dr. Hickson - she is so positive, supportive, competent... I would encourage you to find a doctor that could talk to your husband about the process. Sometimes we need to hear it from an outside source. If you're in Rochester they might let you see the dialysis center - it's very nice and they make you very comfortable. It's such a personal decision and your husband is fortunate to have your support either way, though it must be really tough for you. Happy to talk anytime. Take care.
Momi Jhung

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Sorry to hear that you have ongoing issues...auto immune diseases are not friendly!

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@angiede2001

It would be beginning dialysis, He is a strange critter. He worried about the shunt being put in...like it is the mark of the end times. says maybe he should just go be with Jesus. Pretty well refuses to talk about it. He may come around if I leave him alone. Pretty sure he is scared to death and in denial...he can be mean when he is stressed, so yes stubborn and controlling also 🙂 I read that if you have comorbidities, it really doesn't prolong life anyway...he doesn't have a whole lot...pvcs and controlled high bp. pills that control his cholesterol...obesity. Course, he looks like death warmed over now..prob. the kidneys. I really feel like rt now, I just have to let him make the decision and support him, in whichever. If I push, he won't do it...period.

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Thank you! I do too. I think it was hardest on my Mom for obvious reasons.

REPLY
@momij

Hi Angie,
My experience with dialysis was not a good one and I won't do it again. I had renal failure suddenly from contrast die during a CT scan and an unknown, underlying kidney disease, minimal change disease. I was on dialysis almost 4 months and it made me horribly sick every time (that is not everyone's experience) – until I came to Mayo in Rochester for a second opinion. I dialised there during my visit and my nephrologist, Dr. Latonya Hickson (who I LOVE) made adjustments to the filters and rates (and probably other stuff I don't remember) that made it much more tolerable for me. She then figured out what was wrong, why I wasn't improving, and treated me. I was able to come off dialysis a couple months later. I can't say enough about Dr. Hickson - she is so positive, supportive, competent... I would encourage you to find a doctor that could talk to your husband about the process. Sometimes we need to hear it from an outside source. If you're in Rochester they might let you see the dialysis center - it's very nice and they make you very comfortable. It's such a personal decision and your husband is fortunate to have your support either way, though it must be really tough for you. Happy to talk anytime. Take care.
Momi Jhung

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@momij, my 19 year old daughter has had an autoimmune disease since she was 6 and they are a challenge. Often a rollercoaster ride to keep it under control. I'm sure your Mayo doctors know the latest and best treatment. Hang in there!

REPLY
@jamienolson

@angied2001, I would like to add my Welcome to you and your husband. Mayo Clinic Connect is a great place for you to get information and connect with others that are dealing with dialysis.
May I suggest leaving your post here in the Kidney and Bladder group and also posting in our caregivers group so you can get the support you need while supporting your husband. https://connect.mayoclinic.org/group/caregivers/

I'm tagging fellow members @oohlalalita @jtannen1 and @momij who have been on dialysis. I hope they'll have some insights to share.

While we wait for others to join, here is some information you may be interested in reading on preparing for dialysis found on the Mayo web. http://mayocl.in/2mUyF36

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the article was talking about peritoneal dialysis. I think he is prob. going with hemedialysis.

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