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Stem Cell Treatment For CKD?

Posted by maxwell123 @maxwell123, Jul 6, 2019

Has anyone been treated at Mayo with stem cell therapy to improve their kidney function? I am very interested in this new regenerative medical treatment.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 17, 2019
In reply to @maxwell123 "4. Let me try posting my story from yesterday regarrding how I came off dialysis? You..." + (show)
@maxwell123

4. Let me try posting my story from yesterday regarrding how I came off dialysis? You are right. I was absolutely determined! That was one of the most important factors (determination). I wrote a short story about my experience. It is lengthy, but here is a link to the section that describes what I did to come off dialysis -- http://bit.ly/2JVCa49. You can scroll to the top to read the entire document if you are interested in the full story of dealing with cancer and kidney failure simultaneously. By the way, I fully understand coming off is not something everyone can do and certainly, their medical team must be a part of any effort.

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Thank you for your patience, @maxwell123. And thanks for posting your story successfully today.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Jul 17, 2019
In reply to @teachaero "I’d like to find a dietitian who specializes in CKD, but I think they are hard..." + (show)
@teachaero

I’d like to find a dietitian who specializes in CKD, but I think they are hard to come by. When I search, I can pretty much only find those affiliated with the dialysis centers. Does anyone have advice for helping me get access this resource? My nephrology group has to refer me (if they do!) when I see them next month. I bring this up because of the dialysis center soapbox. 😉

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@teachaero I think like @maxwell123 suggested, it is best to craft your own diet. I myself am stage 3B, with GFR at 32% right now. Because I also have gout and fibromyalgia, I crafted my own diet. Using resources from rsnhope.org , Mayo Clinic website, and American Kidney Foundation I've have figured out what works best for me. As I laughingly tell people good thing I like oatmeal and apples and cardboard! I do admit that I fall away from the diet every once in a while because total abstinence is a recipe for disaster for me. But I watch what I eat very closely. My husband is a kidney transplant recipient Oct 2016, so he is aware of dietary restrictions from his time on dialysis. He lovingly reminds me as he sees me head off track. In the end each person has to figure out what works best for them and be their own advocate.
Ginger

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2 replies
maxwell123 | @maxwell123 | Jul 17, 2019
In reply to @gingerw "@teachaero I think like @maxwell123 suggested, it is best to craft your own diet. I myself..." + (show)
@gingerw

@teachaero I think like @maxwell123 suggested, it is best to craft your own diet. I myself am stage 3B, with GFR at 32% right now. Because I also have gout and fibromyalgia, I crafted my own diet. Using resources from rsnhope.org , Mayo Clinic website, and American Kidney Foundation I've have figured out what works best for me. As I laughingly tell people good thing I like oatmeal and apples and cardboard! I do admit that I fall away from the diet every once in a while because total abstinence is a recipe for disaster for me. But I watch what I eat very closely. My husband is a kidney transplant recipient Oct 2016, so he is aware of dietary restrictions from his time on dialysis. He lovingly reminds me as he sees me head off track. In the end each person has to figure out what works best for them and be their own advocate.
Ginger

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I like your post, Ginger. We sure agree! I like to tell people who face this they must learn to “eat to live and not live to eat!” 🙂

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teachaero | @teachaero | Jul 17, 2019
In reply to @gingerw "@teachaero I think like @maxwell123 suggested, it is best to craft your own diet. I myself..." + (show)
@gingerw

@teachaero I think like @maxwell123 suggested, it is best to craft your own diet. I myself am stage 3B, with GFR at 32% right now. Because I also have gout and fibromyalgia, I crafted my own diet. Using resources from rsnhope.org , Mayo Clinic website, and American Kidney Foundation I've have figured out what works best for me. As I laughingly tell people good thing I like oatmeal and apples and cardboard! I do admit that I fall away from the diet every once in a while because total abstinence is a recipe for disaster for me. But I watch what I eat very closely. My husband is a kidney transplant recipient Oct 2016, so he is aware of dietary restrictions from his time on dialysis. He lovingly reminds me as he sees me head off track. In the end each person has to figure out what works best for them and be their own advocate.
Ginger

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I’d love to have oatmeal as an option, but until I see a nephrologist, it appears on the limit/avoid list everywhere I look. I am grateful for summer blueberries and cherries, but winter will be ALL apples! I will have to check out rsnhope.org.

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1 reply
teachaero | @teachaero | Jul 17, 2019
In reply to @maxwell123 "Good luck with that! I did my own research and crafted my own diet. There are..." + (show)
@maxwell123

Good luck with that! I did my own research and crafted my own diet. There are plenty of resources on the internet, they are somewhat difficult to find for those with low functioning kidneys (and not on dialysis). One thing is for sure, the dieticians in the clinics don't understand diets for low functioning kidneys. They have plenty of suggestions if you are on dialysis, but low functioning kidneys are not their thing. And frankly, if you're even on dialysis but doing your best to preserve your residual function they can't help much. As an example, telling you to load up on animal-based protein (especially red meat) is not something that will help your residual function. That has been my experience, anyway.

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What do you do when resources are conflicting? How often do you get labs done so you can adjust your dietary course?

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1 reply
teachaero | @teachaero | Jul 17, 2019
In reply to @maxwell123 "4. Let me try posting my story from yesterday regarrding how I came off dialysis? You..." + (show)
@maxwell123

4. Let me try posting my story from yesterday regarrding how I came off dialysis? You are right. I was absolutely determined! That was one of the most important factors (determination). I wrote a short story about my experience. It is lengthy, but here is a link to the section that describes what I did to come off dialysis -- http://bit.ly/2JVCa49. You can scroll to the top to read the entire document if you are interested in the full story of dealing with cancer and kidney failure simultaneously. By the way, I fully understand coming off is not something everyone can do and certainly, their medical team must be a part of any effort.

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Wow! Such an amazing story! Thanks for sharing it.

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maxwell123 | @maxwell123 | Jul 17, 2019
In reply to @teachaero "I’d love to have oatmeal as an option, but until I see a nephrologist, it appears..." + (show)
@teachaero

I’d love to have oatmeal as an option, but until I see a nephrologist, it appears on the limit/avoid list everywhere I look. I am grateful for summer blueberries and cherries, but winter will be ALL apples! I will have to check out rsnhope.org.

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It is correct to consult your neph doc regarding oatmeal. But as I mentioned in a previous post I'm not sure potassium is a problem unless you are stage V and your kidneys are not clearing potassium and phosphorus. The reason oatmeal is on the list is due to high potassium and I'm not sure that would affect you (based on what I have read so far). By the way, even though my GFR is 17 my kidney problem is they do not clear urea. They clear potassium and phosphorus with no problem. My labs have always been in the range for both of those.

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maxwell123 | @maxwell123 | Jul 17, 2019
In reply to @teachaero "What do you do when resources are conflicting? How often do you get labs done so..." + (show)
@teachaero

What do you do when resources are conflicting? How often do you get labs done so you can adjust your dietary course?

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I have labs drawn at least once a month, sometimes more often. I am still treated for the effects of my blood cancer (an immune system booster). So between my nephrologist and onc I have them on a regular basis. Also, if you ever want to see your blood work without a doctor visit you should check out this link. https://www.walkinlab.com/. These are the same labs the doctors use. I usually get the metabolic panel for about $28. Regarding changing lab values, about the only thing I focus on is creatinine and BUN. If I stray off the reservation with my diet, the labs nudge me back into the program. My lymphoma from several years ago and the treatment caused a big hit to my immune system, so I also watch my IgG level. When it drops below range I am treated with an infusion of IVIG which boosts my IgG levels back to keep me from catching everything that moves. Other than that, so far there has not been any significant changes. I do keep copies of all my lab reports and read them like a hawk to be sure I'm still alive :-).

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maxwell123 | @maxwell123 | Jul 28, 2019

I began this topic several weeks ago. Since then I reached out to the Transplant Consultant group. They are incredible. The consultant took all of my information and said she would check with her neph doctors and get back. She got back in a few days. The neph doctors indicted that stem cell kidney treatment is not being done except in the labs. It is not in the clinic. She gave me a couple of other places to check but I struck out there as well. I'm not giving up, though! I'll post back here if I find something. In the meantime, the consulting service at Mayo Transplant Center is first class. They are very professional and know the issues very well (no surprise there).

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 29, 2019
In reply to @maxwell123 "I began this topic several weeks ago. Since then I reached out to the Transplant Consultant..." + (show)
@maxwell123

I began this topic several weeks ago. Since then I reached out to the Transplant Consultant group. They are incredible. The consultant took all of my information and said she would check with her neph doctors and get back. She got back in a few days. The neph doctors indicted that stem cell kidney treatment is not being done except in the labs. It is not in the clinic. She gave me a couple of other places to check but I struck out there as well. I'm not giving up, though! I'll post back here if I find something. In the meantime, the consulting service at Mayo Transplant Center is first class. They are very professional and know the issues very well (no surprise there).

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Appreciate the update, Maxwell, and your perseverance in finding answers and sharing the results here.

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