Husband refusing dialysis

Posted by angiede2001 @angiede2001, Mar 23, 2017

Just checking to be supported 🙂

@angiede2001

I learned the symptoms of stage 5..didn’t pay much attention to the other stages. I imagine if any of you have stage 5, you are pretty aware of the symptoms. The book had a list of the lab values in the back and what they mean. If any of you haven’t done this education, it is thru Kidney Smart. I learned that Jack is NEVER to do any new meds or procedures, without running them by his kidney dr. There was like a 10 min. presentation on the all the types of dialysis and a checkoff sheet with the advantages of each one I thought the night peritoneal looked to be the simplest…but if he won’t do it…. There were two web sites given to get recipes that are good for kidneys: “davita.com/diet helper”…the teacher said you could even get meal plans thru that one, but if you do, you have to sit down with a lot of time, to do it. the second one is “kidney.org/patients/kidney kitchen”. DASH diet is good for low salt. I feel better if I can DO something, so collecting info…fear of the unknown is a BIG factor. I got a book from the library “Kidney Disease”…a Guide for living, by Walter Hunt. I am only on page 10, but so far, the book has talked about grief and depression, so good for me. Thank you for always saying such sweet things. You are also something I have done that helps. Lots of prayer also…Bible study and Scriptures…prayers about God giving us strength, etc.

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@angiede2001 Thanks for filling us in on what you have learned. I know that learning about a troubling problem can be very empowering and I sense that you are beginning to get empowered. I’m glad to hear that you are reading as well. We don’t know how your husband might respond in the future to treatment, so what you are learning may help him down the road. I’m sure that your faith will sustain you as well. Prayers and best wishes to you at this Easter time. Teresa

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Thank you, Teresa. I do approach him and say, “I am just going to tell you one thing”…all I can dare to do. So, I did tell him about the peritoneal…that it didn’t look that invasive or hard. Ditto to you, on your best wishes for Easter!!

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@angiede2001 Wow, what a great approach to communicating with your husband!! You seem to have found some productive techniques for communicating with him, good for you. Thanks for the Easter wishes, that is very kind of you. Teresa

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@angiede2001

I learned the symptoms of stage 5..didn’t pay much attention to the other stages. I imagine if any of you have stage 5, you are pretty aware of the symptoms. The book had a list of the lab values in the back and what they mean. If any of you haven’t done this education, it is thru Kidney Smart. I learned that Jack is NEVER to do any new meds or procedures, without running them by his kidney dr. There was like a 10 min. presentation on the all the types of dialysis and a checkoff sheet with the advantages of each one I thought the night peritoneal looked to be the simplest…but if he won’t do it…. There were two web sites given to get recipes that are good for kidneys: “davita.com/diet helper”…the teacher said you could even get meal plans thru that one, but if you do, you have to sit down with a lot of time, to do it. the second one is “kidney.org/patients/kidney kitchen”. DASH diet is good for low salt. I feel better if I can DO something, so collecting info…fear of the unknown is a BIG factor. I got a book from the library “Kidney Disease”…a Guide for living, by Walter Hunt. I am only on page 10, but so far, the book has talked about grief and depression, so good for me. Thank you for always saying such sweet things. You are also something I have done that helps. Lots of prayer also…Bible study and Scriptures…prayers about God giving us strength, etc.

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@angiede2001, I have not connected with you for a while and I want to check in with you.
How are you doing since we last chatted?

If you feel up to it, I would like to ask you if you have any advice or references that might be helpful to a new member, @shelllady? She is facing similar dialysis considerations herself. You will be able to meet her in the Transplant Discussion Group
https://connect.mayoclinic.org/discussion/hello-all-my-name-is-rick-richards-i-have-come-to-a/
I understand if this is a topic you are uncomfortable with.
I continue to wish for peace and comfort to you and your husband.
Rosemary

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@meggotty

My husband has stage 4 of CKD, Chronic Kidney Disease and his creatinine level has been holding steady in the 3.1-3.4 range for the last year. He refuses to go on dialysis and I can’t say as I blame him, he has a marvelous nephrologist who supports his decision. There are new medications on the market in Europe to treat kidney disease that have not appeared in the U.S. mostly because nephrologists have not been aware of them. My husband gave his doctor literature on a pharmaceutical company that is manufacturing these meds and she’s currently looking into it. She was not aware of the medication the last visit. It’s quite a commitment to make the decision to go on dialysis and I’m not sure that once you’re on it, you can take yourself off without certain medical consequences. I understand how Angie feels and if she does some research she may find that there may be some hope for her husband depending of course of the severity of his CKD. This forum is a very informative venue for people who feel lost and have no other advocate to speak for them or their spouse when it comes to finding out the progression of this disease.

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Long story short … my husband had a kidney transplant in 2012, donated by our brother-in-law (no relation). As a result of the immuno suppression (prograf) after the transplant, he developed squamous cell carcinoma (spindle cell) on his scalp. Local dermatologist and Mohs surgeon arranged for us to go to Mayo Jacksonville. In July 2015, his scalp was removed and replaced with a flap taken from his back. This was followed by radiation. More cancer appeared below the flap. Several surgeries and more radiation followed. The tumor board determined that more surgery was chasing ghosts and that a systemic solution was necessary. In summer 2016, he was weaned from Prograf in order to restore more immune system to fight cancer. He started Erbitux.

We knew that it was only a matter of time before he lost the transplant. He said he would not go on dialysis.

Beginning in Jan, the creatinine began to soar. He has hospitalized Mar 1 as Mr. Electrical Engineer was so confused and hallucinating, he could not even pick out underwear. It took 5 hrs dialysis over 2 days to recover to some lucidity. He will not receive another transplant because of cancer.

We started 5 weeks training immediately after he got out of the hospital for home-HEMO dialysis. His prescription is for 2 hrs, four days a week. We can do dialysis any time of day and any day we want, as long as not more than 2 days in between sessions. The NxStage System weighs 75 pounds and can go traveling! It can also be used for nocturnal dialysis.

I will not tell you it was not intimidating at first, but each time we become more comfortable.

Please take a look: http://www.nxstage.com/patients/system-one/

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@meggotty

My husband has stage 4 of CKD, Chronic Kidney Disease and his creatinine level has been holding steady in the 3.1-3.4 range for the last year. He refuses to go on dialysis and I can’t say as I blame him, he has a marvelous nephrologist who supports his decision. There are new medications on the market in Europe to treat kidney disease that have not appeared in the U.S. mostly because nephrologists have not been aware of them. My husband gave his doctor literature on a pharmaceutical company that is manufacturing these meds and she’s currently looking into it. She was not aware of the medication the last visit. It’s quite a commitment to make the decision to go on dialysis and I’m not sure that once you’re on it, you can take yourself off without certain medical consequences. I understand how Angie feels and if she does some research she may find that there may be some hope for her husband depending of course of the severity of his CKD. This forum is a very informative venue for people who feel lost and have no other advocate to speak for them or their spouse when it comes to finding out the progression of this disease.

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@gaybinator, Welcome to Connect. Thank you for sharing this information about your husband’s dialysis option. But, most importantly, I feel that you are giving members a look at a potential alternate option for consideration when they are faced with this difficult dialysis decision.
I know that we have heard from some members who are doing home dialysis that have posted in the transplant discussions. I don’t know if they use a similar system.

Who provided the 5 week training? And is there any follow-up or support available? I was briefly on inhospital and then outpatient dialysis for a while prior to my transplant. I think that my husband and I would require a lot of support.

I will be looking forward to hearing more from you.
Rosemary

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@meggotty

My husband has stage 4 of CKD, Chronic Kidney Disease and his creatinine level has been holding steady in the 3.1-3.4 range for the last year. He refuses to go on dialysis and I can’t say as I blame him, he has a marvelous nephrologist who supports his decision. There are new medications on the market in Europe to treat kidney disease that have not appeared in the U.S. mostly because nephrologists have not been aware of them. My husband gave his doctor literature on a pharmaceutical company that is manufacturing these meds and she’s currently looking into it. She was not aware of the medication the last visit. It’s quite a commitment to make the decision to go on dialysis and I’m not sure that once you’re on it, you can take yourself off without certain medical consequences. I understand how Angie feels and if she does some research she may find that there may be some hope for her husband depending of course of the severity of his CKD. This forum is a very informative venue for people who feel lost and have no other advocate to speak for them or their spouse when it comes to finding out the progression of this disease.

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@gaybinator, I want to offer you a most sincere welcome to our Connect Community. I am a transplant recipient, and that is why your entry is so special to me. I always feel blessed to meet other transplant patients – and this includes the spouse or loved one who has been the support throughout the entire process. For my husband and me, the whole transplant process is a “we” process.

Thank you for sharing your husband’s remarkable journey. I admire the strength with which you and your husband are navigating the obstacles that have been set in front of you.

I invite you to take a look at some of the discussions that are occurring in the Transplant Discussion and Transplant Pages. And join in whenever you feel like saying something. I know that there are others who will like to meet you.
Rosemary

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@meggotty

My husband has stage 4 of CKD, Chronic Kidney Disease and his creatinine level has been holding steady in the 3.1-3.4 range for the last year. He refuses to go on dialysis and I can’t say as I blame him, he has a marvelous nephrologist who supports his decision. There are new medications on the market in Europe to treat kidney disease that have not appeared in the U.S. mostly because nephrologists have not been aware of them. My husband gave his doctor literature on a pharmaceutical company that is manufacturing these meds and she’s currently looking into it. She was not aware of the medication the last visit. It’s quite a commitment to make the decision to go on dialysis and I’m not sure that once you’re on it, you can take yourself off without certain medical consequences. I understand how Angie feels and if she does some research she may find that there may be some hope for her husband depending of course of the severity of his CKD. This forum is a very informative venue for people who feel lost and have no other advocate to speak for them or their spouse when it comes to finding out the progression of this disease.

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@angiede2001 Hi Angie: I’ve been thinking about you. I hope you are doing well. Teresa

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@meggotty

My husband has stage 4 of CKD, Chronic Kidney Disease and his creatinine level has been holding steady in the 3.1-3.4 range for the last year. He refuses to go on dialysis and I can’t say as I blame him, he has a marvelous nephrologist who supports his decision. There are new medications on the market in Europe to treat kidney disease that have not appeared in the U.S. mostly because nephrologists have not been aware of them. My husband gave his doctor literature on a pharmaceutical company that is manufacturing these meds and she’s currently looking into it. She was not aware of the medication the last visit. It’s quite a commitment to make the decision to go on dialysis and I’m not sure that once you’re on it, you can take yourself off without certain medical consequences. I understand how Angie feels and if she does some research she may find that there may be some hope for her husband depending of course of the severity of his CKD. This forum is a very informative venue for people who feel lost and have no other advocate to speak for them or their spouse when it comes to finding out the progression of this disease.

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The training was provided at the local Fresenius Dialysis Center by a RN. 4 days week/ 4 hours a day. He received the dialysis as we were training, so it was definitely “hands on” training. The dialysis center has an RN on call 24/7; the NxStage equipment people also provide 24/7 phone support. To my surprise, both have been very efficient and available.

The privacy and the flexibility were the selling points for my husband.

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@meggotty

My husband has stage 4 of CKD, Chronic Kidney Disease and his creatinine level has been holding steady in the 3.1-3.4 range for the last year. He refuses to go on dialysis and I can’t say as I blame him, he has a marvelous nephrologist who supports his decision. There are new medications on the market in Europe to treat kidney disease that have not appeared in the U.S. mostly because nephrologists have not been aware of them. My husband gave his doctor literature on a pharmaceutical company that is manufacturing these meds and she’s currently looking into it. She was not aware of the medication the last visit. It’s quite a commitment to make the decision to go on dialysis and I’m not sure that once you’re on it, you can take yourself off without certain medical consequences. I understand how Angie feels and if she does some research she may find that there may be some hope for her husband depending of course of the severity of his CKD. This forum is a very informative venue for people who feel lost and have no other advocate to speak for them or their spouse when it comes to finding out the progression of this disease.

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You are so sweet to make me feel cared for. Trying to cook a kidney friendly diet..not really knowing what I am doing. 🙂 Dr apt the 14th.

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@angiede2001

I learned the symptoms of stage 5..didn’t pay much attention to the other stages. I imagine if any of you have stage 5, you are pretty aware of the symptoms. The book had a list of the lab values in the back and what they mean. If any of you haven’t done this education, it is thru Kidney Smart. I learned that Jack is NEVER to do any new meds or procedures, without running them by his kidney dr. There was like a 10 min. presentation on the all the types of dialysis and a checkoff sheet with the advantages of each one I thought the night peritoneal looked to be the simplest…but if he won’t do it…. There were two web sites given to get recipes that are good for kidneys: “davita.com/diet helper”…the teacher said you could even get meal plans thru that one, but if you do, you have to sit down with a lot of time, to do it. the second one is “kidney.org/patients/kidney kitchen”. DASH diet is good for low salt. I feel better if I can DO something, so collecting info…fear of the unknown is a BIG factor. I got a book from the library “Kidney Disease”…a Guide for living, by Walter Hunt. I am only on page 10, but so far, the book has talked about grief and depression, so good for me. Thank you for always saying such sweet things. You are also something I have done that helps. Lots of prayer also…Bible study and Scriptures…prayers about God giving us strength, etc.

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Exhausted tonight…will try to at least give her the name of a book or 2 tomorrow and a website or 2

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@hopeful33250

@meggotty Thank you for sharing the approach that your husband is taking. As we share experiences, we really do learn from each other. Teresa

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Need to share with Nellie, and now can’t find the thread…can you help?

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@hopeful33250

@meggotty Thank you for sharing the approach that your husband is taking. As we share experiences, we really do learn from each other. Teresa

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@angiede2001 If you go up to the search icon (it looks like a magnifying glass) and type in “nellie” you will see several references to Nellie you will probably find the right person there. Thanks for checking in with us and giving us an update. How is your husband doing? Teresa

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@hopeful33250

@meggotty Thank you for sharing the approach that your husband is taking. As we share experiences, we really do learn from each other. Teresa

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About the same…just sluggish and sleepy

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@hopeful33250

@meggotty Thank you for sharing the approach that your husband is taking. As we share experiences, we really do learn from each other. Teresa

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@angiede2001 Sorry to hear that. Best wishes to you as you care for him and yourself! Teresa

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