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.
Replidea™ has been shown in a phase 2b clinical trial to effectively and safely treat SHPT and the underlying vitamin D insufficiency in pre-dialysis patients. Vitamin D insufficiency arises in CKD due to the abnormal upregulation of CYP24, an enzyme which destroys vitamin D and its metabolites. Studies in CKD patients have demonstrated that currently available over-the-counter and prescription vitamin D products cannot reliably raise blood vitamin D prohormone levels or effectively treat SHPT.
"OPKO intends to market Replidea™ along with our proprietary point-of-care vitamin D diagnostic test currently in development," stated Phillip Frost, MD, CEO and Chairman. "We envision these remarkable products as part of the foundation for a new and markedly improved standard of care for chronic kidney disease patients having SHPT and/or hyperphosphatemia."
Alpharen™ has been shown safe and effective in treating hyperphosphatemia in the phase 2 and 3 clinical trials undertaken to date in dialysis patients. Hyperphosphatemia (elevated serum phosphorus) exacerbates SHPT and promotes bone disease, soft tissue mineralization and progression of kidney disease. Approximately 90% of dialysis patients in the United States require regular treatment.
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.
I've copied the statement by OPKO about their latest med for chronic Kidney disease below. You can google more about it or ask your physician. most do not know about this medication for CKD but my husband's neph is really good at researching questions about meds.
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.
@angiede2001 I'm pleased to see how you are taking proactive steps to deal with a difficult situation. That is just great! Keep at it. I'm so glad that you were able to attend the education. Tell us a little about what you were able to learn and how it helped you. A support group would be great for you as well. Keep us informed as to how you are doing. It is important that you take care of yourself. We at Mayo Connect are in your corner! Teresa
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.
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.
@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
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!!
@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
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.
@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
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.
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.
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Replidea™ has been shown in a phase 2b clinical trial to effectively and safely treat SHPT and the underlying vitamin D insufficiency in pre-dialysis patients. Vitamin D insufficiency arises in CKD due to the abnormal upregulation of CYP24, an enzyme which destroys vitamin D and its metabolites. Studies in CKD patients have demonstrated that currently available over-the-counter and prescription vitamin D products cannot reliably raise blood vitamin D prohormone levels or effectively treat SHPT.
"OPKO intends to market Replidea™ along with our proprietary point-of-care vitamin D diagnostic test currently in development," stated Phillip Frost, MD, CEO and Chairman. "We envision these remarkable products as part of the foundation for a new and markedly improved standard of care for chronic kidney disease patients having SHPT and/or hyperphosphatemia."
Alpharen™ has been shown safe and effective in treating hyperphosphatemia in the phase 2 and 3 clinical trials undertaken to date in dialysis patients. Hyperphosphatemia (elevated serum phosphorus) exacerbates SHPT and promotes bone disease, soft tissue mineralization and progression of kidney disease. Approximately 90% of dialysis patients in the United States require regular treatment.
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1 ReactionI've copied the statement by OPKO about their latest med for chronic Kidney disease below. You can google more about it or ask your physician. most do not know about this medication for CKD but my husband's neph is really good at researching questions about meds.
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1 ReactionGot the education...asked about a local support group.
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1 Reaction@angiede2001 I'm pleased to see how you are taking proactive steps to deal with a difficult situation. That is just great! Keep at it. I'm so glad that you were able to attend the education. Tell us a little about what you were able to learn and how it helped you. A support group would be great for you as well. Keep us informed as to how you are doing. It is important that you take care of yourself. We at Mayo Connect are in your corner! Teresa
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Like -
Helpful -
Hug
1 ReactionI 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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Like -
Helpful -
Hug
2 Reactions@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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Helpful -
Hug
1 ReactionThank 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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Hug
2 Reactions@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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Helpful -
Hug
2 Reactions@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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Like -
Helpful -
Hug
2 ReactionsLong 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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Helpful -
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3 Reactions