Mayo Clinic Connect
Just checking to be supported 🙂
Hi Angie, I’m glad to see you posted in the caregivers group. This will be a great place for you to receive support and help support others who may also be needing support from you.
I bet this was a tough decision for the two of you to make. While we wait for other members to connect with you, tell me what you have found to be the most challenging with this part of the journey?
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I did not participate in this decision, other than providing some info for him to refuse. 🙁 I can't see your comment now to see what else I want to say.
Most challenging is fear of facing being alone. .. 64 yrs old, run down house…facing all that stuff alone..we haven't gotten along very well, but at least he was always here to blame. Have to face retirement, old age issues alone. Feel like I have to hide my depression and fears from him, coz he has enough of his own stuff to handle. Don't think friends will get it.
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@angiede2001 Keep sharing with us, it will help. When you least expect it, you will find ways to cope with all of these challenges. Just keep connected to support groups and friends and family. It really will make a difference. Teresa
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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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@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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Thank you..I would like to know how things usually progress..not sure he wants to 🙂 I can go see the education people by myself, but no phone call from them yet..will pro call dr's office tommorrow.
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Could you send me tha name of the meds or contact info or such, of the drug/drugs you are speaking of?
I may have unscribed to this…going to subscribe again 🙂
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.
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.
Got the education…asked about a local support group.
@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.
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