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angiede2001
@angiede2001

Posts: 46
Joined: Mar 04, 2017

Decisions about dialysis

Posted by @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.

REPLY

@angiede2001, I would like to welcome you to Connect. I am happy that you have entered our discussion. Here, on Connect, you have the opportunity to meet others who have had similar experiences that you face. We work together in a discussion to answer each others questions, and to support each other.

Would you share with us some more information about this. Is he new to dialysis? Or is he making an end of treatment kind of decision? Is he just stubborn and controlling? We do not pass judgment, but we need something to begin this conversation.

You are not alone. I feel sure that others will have experiences similar to yours.
I will be looking forward to hearing more from you.
Rosemary

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.

@angiede2001, This must be hard for you to witness. But as having been a patient, I will try to add some input based on my experiences and I am by no means informed on dialysis.
I needed dialysis in an emergency situation, and I was quite unaware of what was going on. But, when I needed to have a more permanent port put in I was more alert and in a regular hospital setting. I was absolutely terrified of having ‘that thing’ placed inside of my body. The mere thought of it happening made me nauseous. But it happened anyway. After that, I dealt with the thought of my own blood going thru the machine, another agony in my mind. I share this, because this might be some of what is going on inside your husband’s mind. These thoughts are something that my husband didn’t really understand. From his point of view, he just saw it as a doing what was needed to get me well.
Perhaps, your husband just needs time to process this concept. And perhaps, he is stressing about his condition moving beyond his control. I think that the medical team might be the best ones to do the ‘dirty work’ to educate him on this. You can help by supporting and calmly discussing this with him, and especially letting him know that you love him and will be with him.
There are a lot of people who are able to continue active lives while undergoing dialysis. You might ask if there is someone that your husband can talk to.
Rosemary

@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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Well my story won’t give you any answers but it might help you not feel alone, and realize other people do make similar decisions. My dad had been on dialysis for years (had PKD) and then got a kidney transplant (my brother was a living kidney donor) but several years after the transplant he got an infection which went to his brain. My dad’s quality of life was not perfect but the damage to his brain might have been reversed if he had accepted treatment. However, to fight the infection he was going to have to follow treatment that would result in the transplanted kidney getting rejected which would result in dialysis again. My dad had ALWAYS said if he needed to go back on dialysis he would choose not to and that would be the end of his life and that is exactly what he did. He would have lived longer if he had gone back on dialysis but he was done fighting and was ready for heaven. It was difficult to accept but it was his wish. I realize this is a different situation because he had been on dialysis before so it was not a control issue or fear but more exhaustion of being sick. Maybe his doctor can talk to him? Best of luck!

@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

@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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He is starting to talk about the different kinds, so he may come around.

@rosemarya

@angiede2001, This must be hard for you to witness. But as having been a patient, I will try to add some input based on my experiences and I am by no means informed on dialysis.
I needed dialysis in an emergency situation, and I was quite unaware of what was going on. But, when I needed to have a more permanent port put in I was more alert and in a regular hospital setting. I was absolutely terrified of having ‘that thing’ placed inside of my body. The mere thought of it happening made me nauseous. But it happened anyway. After that, I dealt with the thought of my own blood going thru the machine, another agony in my mind. I share this, because this might be some of what is going on inside your husband’s mind. These thoughts are something that my husband didn’t really understand. From his point of view, he just saw it as a doing what was needed to get me well.
Perhaps, your husband just needs time to process this concept. And perhaps, he is stressing about his condition moving beyond his control. I think that the medical team might be the best ones to do the ‘dirty work’ to educate him on this. You can help by supporting and calmly discussing this with him, and especially letting him know that you love him and will be with him.
There are a lot of people who are able to continue active lives while undergoing dialysis. You might ask if there is someone that your husband can talk to.
Rosemary

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I am sure there are a lot of things going thru his mind. I am pretty sure he would reject the idea of talking to anyone yet. He was talking about the kind in his neck today, so he is starting to think about it, instead of out and out rejection of the idea.

@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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I will read the article I may wait for a bit to join the other group. I don’t think I am ready for the caregivers group yet. I think I could get overwhelmed right quick 🙂

@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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totally understand. You have a lot on your plate right now. When you’re ready or if you need to talk to someone that may also be caring for a loved one on dialysis, the caregivers group will be a good place to seek advice. I wish you both well with the decision making.

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

@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

@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

@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

@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!

@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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