1. < Kidney & Bladder

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.

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

Mentor
Ginger, Volunteer Mentor | @gingerw | Jul 16, 2019
In reply to @maxwell123 "Hi Colleen, thank you for the update. This is a wonderful forum and provides a wealth..." + (show)
@maxwell123

Hi Colleen, thank you for the update. This is a wonderful forum and provides a wealth of information. Let me reply to your questions and comments.

1. Stem cell therapy. I had a long discussion with your consultant last Wednesday and asked her to wait for me to provide more detail before she communicated with Dr. Textor. I sent that to her yesterday and am waiting on the response. If you are intersted I will be happy to post the details of what I sent her here. There is nothing private in the material. It just describes my AKF issue in more detail. I've been dealing with it for over five years, now.

2. Dr. Textor. I've read his bio and reviewed presentations of his that ended up on YouTube. I know he his the right person for me to see -- which is something I have sought for over two years. What an accomplished persona and nephrologist!! After three years on dialysis, I came to many conclusions about dialysis and the medical community. Dialysis is a miracle treatment given to us by modern medicine. While no one wants to be there, it is so much better than the alternative of no treatment. Not everyone can qualify for or even wants a transplant. I am one of those. One conclusion I came to from my experience was that while the doctors I see locally are excellent and I respect them, their primary job while I was on dialysis was to deliver the best dialysis possible and not think outside the box for ways to improve my sick kidneys. They did a good job at dialysis, but most of the effort to come off dialysis was mine. I believe it never would have happened if I had not pushed my doctor. I'm not talking about alternative treatments on my own but what I found from my own research from reliable medical sources. It seems that Dr. Textor's mission is to find a way to improve kidney function and not so much renal replacement therapy. That's just my observation from what I have seen.

3. Regarding the artificial kidney, I have followed that work for several years. One of the two centers working on that project is close to my home. I think it is wonderful and am anxious to see human trials begin. They seem to be struggling for funding and that amazes me. They have done an incredible job with a very complicated issue. It sure seems funding for this effort would be relatively easy. It should be!

4. Finally, how did I come off dialysis? I have written a short story about my experience and attempted to post a link to that story but Mayo Connect still will not allow me to post links. I'll post the link if you can get that corrected.

Thank you again and I'm so glad I finally found you all!

- Max

Jump to this post

@maxwell123 I look forward to your story! The two largest dialysis franchises, Davita and Fresenius, have convinced many doctors and medical companies to not back the artificial kidney research. Their thought is that with an artificial kidney there is less need for all the medications and dialysis units and that would be bad business for them. Big pharmaceutical companies don't want to see cures for things like kidney disease and cancer. Sad to say but it's the truth. I'll get off my soapbox now
Ginger

REPLY
3 replies
maxwell123 | @maxwell123 | Jul 16, 2019
In reply to @gingerw "@maxwell123 I look forward to your story! The two largest dialysis franchises, Davita and Fresenius, have..." + (show)
@gingerw

@maxwell123 I look forward to your story! The two largest dialysis franchises, Davita and Fresenius, have convinced many doctors and medical companies to not back the artificial kidney research. Their thought is that with an artificial kidney there is less need for all the medications and dialysis units and that would be bad business for them. Big pharmaceutical companies don't want to see cures for things like kidney disease and cancer. Sad to say but it's the truth. I'll get off my soapbox now
Ginger

Jump to this post

Ginger, I don't lean too much toward the conspiracy side, but I think there is some truth in what you say. Dialysis is a very big business! I can see that with the funding issue on the artificial kidney. I also see that with the docs in the clinics who have no interest in working to get you off of dialysis unless you move in the direction of a transplant -- which they know is a fairly low percentage of patients who are on dialysis.

REPLY
maxwell123 | @maxwell123 | Jul 16, 2019
In reply to @colleenyoung "Shucks, Max. My apologies. I got ahead of myself. You will be able to post links..." + (show)
@colleenyoung

Shucks, Max. My apologies. I got ahead of myself. You will be able to post links starting tomorrow. Let me see if I can override that permissions thing, so you can post the link to your story.

Jump to this post

Colleen, Okay just let me know if you get an override. Otherwise, I'll post it tomorrow. Tks.

REPLY
maxwell123 | @maxwell123 | Jul 17, 2019
In reply to @gingerw "@maxwell123 I look forward to your story! The two largest dialysis franchises, Davita and Fresenius, have..." + (show)
@gingerw

@maxwell123 I look forward to your story! The two largest dialysis franchises, Davita and Fresenius, have convinced many doctors and medical companies to not back the artificial kidney research. Their thought is that with an artificial kidney there is less need for all the medications and dialysis units and that would be bad business for them. Big pharmaceutical companies don't want to see cures for things like kidney disease and cancer. Sad to say but it's the truth. I'll get off my soapbox now
Ginger

Jump to this post

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.

REPLY
3 replies
maxwell123 | @maxwell123 | 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.

Jump to this post

Let me add one additional comment regarding the point of reduced dialysis mentioned in the previous post. You can review this section of the story to see the reasoning for doing this. http://bit.ly/2SisuWC The bottom line for me was "if you don't use it -- you lose it." That is atrophy. That's what the body parts do if you don't use them (my theory). And that's what I saw for my kidneys in my future if I remained on dialysis.

REPLY
1 reply
kamama94 | @kamama94 | Jul 17, 2019
In reply to @maxwell123 "Let me add one additional comment regarding the point of reduced dialysis mentioned in the previous..." + (show)
@maxwell123

Let me add one additional comment regarding the point of reduced dialysis mentioned in the previous post. You can review this section of the story to see the reasoning for doing this. http://bit.ly/2SisuWC The bottom line for me was "if you don't use it -- you lose it." That is atrophy. That's what the body parts do if you don't use them (my theory). And that's what I saw for my kidneys in my future if I remained on dialysis.

Jump to this post

@maxwell123, IDK if your browser does this but the recipes I posted for you are on the next page in my browser.

REPLY
teachaero | @teachaero | Jul 17, 2019
In reply to @maxwell123 "Hi Colleen, thank you for the update. This is a wonderful forum and provides a wealth..." + (show)
@maxwell123

Hi Colleen, thank you for the update. This is a wonderful forum and provides a wealth of information. Let me reply to your questions and comments.

1. Stem cell therapy. I had a long discussion with your consultant last Wednesday and asked her to wait for me to provide more detail before she communicated with Dr. Textor. I sent that to her yesterday and am waiting on the response. If you are intersted I will be happy to post the details of what I sent her here. There is nothing private in the material. It just describes my AKF issue in more detail. I've been dealing with it for over five years, now.

2. Dr. Textor. I've read his bio and reviewed presentations of his that ended up on YouTube. I know he his the right person for me to see -- which is something I have sought for over two years. What an accomplished persona and nephrologist!! After three years on dialysis, I came to many conclusions about dialysis and the medical community. Dialysis is a miracle treatment given to us by modern medicine. While no one wants to be there, it is so much better than the alternative of no treatment. Not everyone can qualify for or even wants a transplant. I am one of those. One conclusion I came to from my experience was that while the doctors I see locally are excellent and I respect them, their primary job while I was on dialysis was to deliver the best dialysis possible and not think outside the box for ways to improve my sick kidneys. They did a good job at dialysis, but most of the effort to come off dialysis was mine. I believe it never would have happened if I had not pushed my doctor. I'm not talking about alternative treatments on my own but what I found from my own research from reliable medical sources. It seems that Dr. Textor's mission is to find a way to improve kidney function and not so much renal replacement therapy. That's just my observation from what I have seen.

3. Regarding the artificial kidney, I have followed that work for several years. One of the two centers working on that project is close to my home. I think it is wonderful and am anxious to see human trials begin. They seem to be struggling for funding and that amazes me. They have done an incredible job with a very complicated issue. It sure seems funding for this effort would be relatively easy. It should be!

4. Finally, how did I come off dialysis? I have written a short story about my experience and attempted to post a link to that story but Mayo Connect still will not allow me to post links. I'll post the link if you can get that corrected.

Thank you again and I'm so glad I finally found you all!

- Max

Jump to this post

Maybe with the new legislation to improve prevention of kidney disease and increase transplant access, there could actually be more funding for development of an artificial kidney?
I love hearing stories of people with kidney disease who have been able to find ways to improve their function!

REPLY
teachaero | @teachaero | Jul 17, 2019
In reply to @gingerw "@maxwell123 I look forward to your story! The two largest dialysis franchises, Davita and Fresenius, have..." + (show)
@gingerw

@maxwell123 I look forward to your story! The two largest dialysis franchises, Davita and Fresenius, have convinced many doctors and medical companies to not back the artificial kidney research. Their thought is that with an artificial kidney there is less need for all the medications and dialysis units and that would be bad business for them. Big pharmaceutical companies don't want to see cures for things like kidney disease and cancer. Sad to say but it's the truth. I'll get off my soapbox now
Ginger

Jump to this post

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. 😉

REPLY
2 replies
maxwell123 | @maxwell123 | 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. 😉

Jump to this post

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.

REPLY
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