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, I send you my wishes and thoughts. Making decisions can be difficult. But it sounds to me like he and you are working thru this decision, look to his medical team for information as it relates to him. They will be the best ones to walk you thru this. Keep in mind, also, that all of us have different bodies, different health issues, and different reactions to treatment. Second opinions are always an option if you are not satisfied or if you have unanswerable questions.
I hope your husband feels better, soon.
Rosemary
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
@lcamino and @momij, We do have a discussion forum for autoimmune diseases if you are interested. https://connect.mayoclinic.org/group/autoimmune-diseases/
Thank you being part of this discussion. Your strength and determination are powerful examples to all of us.
Rosemary
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
Thank you, Rosemary. His dr is retiring, so his next apt is in June with a new nephrologist. He wants to wait till then. I may try to see if he'll go sooner to get a second opinion. Tightrope!
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, If his medical needs are being met, and he is satisfied, he might not want a second opinion. Let me know what you decide in June?
Has he made a decision, or started dialysis? I hope he is doing okay either way.
Rosemary
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, You and your husband have been through a difficult time of learning and decision making. My thoughts and prayers are for both of you. He is fortunate to have you with him. I know that this must have been a difficult decision. And that you are still coming to terms with it; and you probably will be for some time to come. I want you to know that we are still here anytime you need anything, or just want to chat. Please know that you are not alone.
I hope that you and he are able to find comfort in knowing that he was able to make this informed decision about his future healthcare.
Prayers wrapped in hugs are coming with this message,
Rosemary
Hello @angiede2001 Nice to e-meet you, even if it is under such stressful times for you. I am Scott and while I have no experience with dialysis, I was the primary caregiver for my wife for 14+ years and helped her through some of the very difficult treatment decisions she made. I also helped her with communicating those to family, and often acting as her armor and buffer with those who disagreed with her decisions and felt the need to interfere with her decisions. My wife made many decisions where she chose what she viewed as 'quality time over quantity of time' in her treatment decisions. She and I discovered often these are some of the toughest decisions a patient makes and frequently difficult for some others to understand and accept. I applaud your positon of supporting your husband's difficult decision. Caregiving is touch day in and day out, but when we must add these gut-wrenching decisions it can become overwhelming. At least it frquently did for me.
I am also the Volunteer Mentor over on the Caregiver discussion group. I just wanted to say it is a welcoming and nonjudgmental group. We all love to share some of the caregiving hints and hacks we have each developed during our times as caregivers. Feel free to just check it out, read, and not even post if you don't feel up to it. I know you said you didn't feel ready, but just remember we will be there 🙂
I am ready now, coz he has made his decision to refuse treatment. Ate there support groups a person can attend? I am scared to death of the future, and I just feel weird talking to people about it. Feels like I am thinking more of me than him.
Connect
Connect
Like
Helpful
Hug
@angiede2001, I send you my wishes and thoughts. Making decisions can be difficult. But it sounds to me like he and you are working thru this decision, look to his medical team for information as it relates to him. They will be the best ones to walk you thru this. Keep in mind, also, that all of us have different bodies, different health issues, and different reactions to treatment. Second opinions are always an option if you are not satisfied or if you have unanswerable questions.
I hope your husband feels better, soon.
Rosemary
@lcamino and @momij, We do have a discussion forum for autoimmune diseases if you are interested.
https://connect.mayoclinic.org/group/autoimmune-diseases/
Thank you being part of this discussion. Your strength and determination are powerful examples to all of us.
Rosemary
-
Like -
Helpful -
Hug
1 ReactionThank you, Rosemary. His dr is retiring, so his next apt is in June with a new nephrologist. He wants to wait till then. I may try to see if he'll go sooner to get a second opinion. Tightrope!
-
Like -
Helpful -
Hug
2 Reactions@angiede2001, If his medical needs are being met, and he is satisfied, he might not want a second opinion. Let me know what you decide in June?
Has he made a decision, or started dialysis? I hope he is doing okay either way.
Rosemary
He is only supposed to get his shunt and teaching rt now..13%
-
Like -
Helpful -
Hug
1 ReactionHe has decided against dialysis.
@angiede2001, You and your husband have been through a difficult time of learning and decision making. My thoughts and prayers are for both of you. He is fortunate to have you with him. I know that this must have been a difficult decision. And that you are still coming to terms with it; and you probably will be for some time to come. I want you to know that we are still here anytime you need anything, or just want to chat. Please know that you are not alone.
I hope that you and he are able to find comfort in knowing that he was able to make this informed decision about his future healthcare.
Prayers wrapped in hugs are coming with this message,
Rosemary
-
Like -
Helpful -
Hug
3 ReactionsThank you...not what I want, but I will try to support him. Thanks for your prayers wrapped in hugs. You might as well be from my church 🙂
-
Like -
Helpful -
Hug
3 ReactionsHello @angiede2001 Nice to e-meet you, even if it is under such stressful times for you. I am Scott and while I have no experience with dialysis, I was the primary caregiver for my wife for 14+ years and helped her through some of the very difficult treatment decisions she made. I also helped her with communicating those to family, and often acting as her armor and buffer with those who disagreed with her decisions and felt the need to interfere with her decisions. My wife made many decisions where she chose what she viewed as 'quality time over quantity of time' in her treatment decisions. She and I discovered often these are some of the toughest decisions a patient makes and frequently difficult for some others to understand and accept. I applaud your positon of supporting your husband's difficult decision. Caregiving is touch day in and day out, but when we must add these gut-wrenching decisions it can become overwhelming. At least it frquently did for me.
I am also the Volunteer Mentor over on the Caregiver discussion group. I just wanted to say it is a welcoming and nonjudgmental group. We all love to share some of the caregiving hints and hacks we have each developed during our times as caregivers. Feel free to just check it out, read, and not even post if you don't feel up to it. I know you said you didn't feel ready, but just remember we will be there 🙂
Peace and strength.
-
Like -
Helpful -
Hug
3 ReactionsI am ready now, coz he has made his decision to refuse treatment. Ate there support groups a person can attend? I am scared to death of the future, and I just feel weird talking to people about it. Feels like I am thinking more of me than him.
-
Like -
Helpful -
Hug
1 Reaction