Mayo Clinic Connect
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.
@maxwell123 Welcome to Mayo Clinic Connect! We're glad you found us. I haven't heard of this therapy. Would you share with us your kidney function concerns, where you are on your journey to better health?
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At age 69, five years ago I was diagnosed with AKF. I was on dialysis for three years and worked very hard with lifestyle and other changes to come off — without a transplant. I DID come off in October of 2016 after three years (extremely rare). I came off with a GFR of 13 and up until recently, it has hovered around 17. I recently had a medical event that caused my GFR to fall again. I'm hoping it is temporary. I've corrected the underlying problem. I need to improve my GFR and am always looking for ways to do that. I have seen many posts and comments regarding stem cell therapy and the progress being made with that technology. Mayo is at the forefront of some of this research and I believe it may even be in the clinic there. I tried to post links to several Mayo experts but was blocked by your platform. Dr. Stephen Textor has focused on this as have others at Mayo. I want to learn more and determine if a visit to Mayo might be productive. I have other links for Mayo if you are interested. Thanks.
Liked by Ginger, Volunteer Mentor
@maxwell123, Congratulations on the remarkable life changes that you have dedicated yourself to in order to come off dialysis. I hope that this will be more than temporary for you.
I have a liver and kidney transplant due to liver disease that caused acute kidney failure. As a result, (and this must sound odd) I am pretty much unfamiliar with kidney issues. The closest that I come with any familiarity with your situation is that I think that I had an appointment with Dr S Textor sometime during the past 10 years. You will be able to post the links in a couiple days because you have just joined Connect. I think it is 48 hrs.
Welcome to Connect. I look forward to learning more about this, and to hearing from others.
Rosemary, how long ago did you have your transplant and was it at Mayo? I am happy that it all worked for you so well. That is quite a journey! If you had acute failure I suspect you went on dialysis. I’ve learned a lot about the kidneys with my situation. They are very complex and are responsible for many life altering body functions – not just clearing out toxins. Hard to live with serious kidney problems if not on dialysis or transplanted. I did not pursue a transplant and instead have hoped for technology to offer a few more options. We are almost there today. By the way, I have a consult with the transplant person on Wednesday to discuss stem cell. I hope to learn more.
Liked by Rosemary, Volunteer Mentor
I received my transplant in April 2009. It was a simultaneous liver and kidney transplant meaning 1 surgery, 1 donor, 2 organs. I had Primary Sclerosing Cholangitis (PSC) liver disease that advanced to endstage liver failure and placed me on the list for a liver transplant in Kentucky. I was in late stage liver failure when there were signs of cholangiocarcinoma (cancer in bile ducts) so, I was referred to Mayo Rochester. Unfortunately, I missed my appointment because acute kidney failure placed me in ICU in late Feb. where I was placed on emergency dialysis (neck port) to keep me alive. After 5 days I was flown to Mayo Rochester and spent 2 weeks in the hospital with inpatient dialysis. I was released and had out patient dialysis until my transplant in April. My husband and I stayed in Rochester at Gift of Life House. So, yes, it was quite a journey for us. The good part is that when I got my new organs, they began to work immediately.
I am sorry for the long story, but that is what it was for me. I hope you can find some comfort knowing that Mayo is a terrific place for treatment. My husband and I return there annually for my checkup.
I am intertested to know what you learn about the stem cell treatment after your discussion. Are you talking to someone at Mayo?
Liked by teachaero
WOW! God has blessed us both. I was diagnosed with Mantle Cell Lymphoma and kidney failure at the same time. I was 69 at the time (2/14) and had never set foot in a hospital for treatment in my life. I was very active and a runner (25 to 30 miles a week) I went to my family doctor two weeks after my kidneys stopped working unbeknownst to me (another story) with what I thought was a bug. I walked into the ER following my doctor's instructions (he did not tell me why) and 45 minutes later I was in ICU with a neck catheter. I was on chemo and dialysis at the same time for six months. Anyway, I was determined not to stay on dialysis. It just took me three years to get off.
You will be able to post links now. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wish to post are not spam.
Here is the link to the Center for Regenerative Medicine at Mayo Clinic https://www.mayo.edu/research/centers-programs/center-regenerative-medicine
– Stephen C. Textor's research profile https://www.mayo.edu/research/faculty/textor-stephen-c-m-d/bio-00078183
Looks like he's doing incredible stuff.
To find out about valid stem cell therapy research and available clinical trials, you can call Mayo Clinic's Regenerative Medicine free telephone consult service. When you call, they will tell you about the availability of approved stem cell therapy at Mayo Clinic and elsewhere, and for what conditions. They can also tell you about research studies that are actively recruiting participants. Furthermore, you can add your name to a database to be notified when additional studies and information become available. You can learn more about the Consult Service here http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/patient-care/clinical-services/regenerative-medicine-consult-service.
Or call 1-844-276-2003 to speak with one of our experts.
Have you also seen this discussion about research into artificial kidneys?
– Has anyone heard of an artificial kidney being made? https://connect.mayoclinic.org/discussion/has-anyone-heard-of-an-artificial-kidney-being-made/
Maxwell, What besides determination helped you get off dialysis?
Liked by Rosemary, Volunteer Mentor, Ginger, Volunteer Mentor
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!
Liked by Rosemary, Volunteer Mentor, Ginger, Volunteer Mentor, kamama94, teachaero
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.
Liked by kamama94
Can't wait to read Max's story!
Liked by Rosemary, Volunteer Mentor, Ginger, Volunteer Mentor, teachaero
@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, 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.
Liked by Rosemary, Volunteer Mentor, Ginger, Volunteer Mentor, kamama94
Colleen, Okay just let me know if you get an override. Otherwise, I'll post it tomorrow. Tks.
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.
Liked by Colleen Young, Connect Director, kamama94
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.
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