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Congestive Heart Failure in young people

Heart & Blood Health | Last Active: Aug 29, 2023 | Replies (110)

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@fishinpete

First of all my heart goes out to everyone who posts their difficulties here. Sometimes when I think I'm having a bad day, then I read someone else's story, it's not such a bad day for me after all. But everything that I have read here is about treatment and not a cure. What I'm about to ask is outside of the box, but has anyone had any experience with gene therapy? Without going into a lot of detail, It is suppose to rejuvenate and strengthen dead muscle. Lab research, tests on people in the last stage of CHF had 100% positive results. I know it's controversial and doesn't have the FDA's blessing, but there are already clinics operating here in the US showing positive results in treating people for cardiomypathy. Doctors don't want to talk about it here in the states. Other countries have all ready approved and are administrating gene therapy to patients. I have already written a letter already to my senator, It takes a lot of politics, time and money to get medical procedures approved.

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Replies to "First of all my heart goes out to everyone who posts their difficulties here. Sometimes when..."

I have not heard of it. I would love to know more. Where did you hear of this?

I've read about stem cell research mainly off of the internet and articles from medical publications. Actually it's very interesting and working in most cases. It's not only for heart disease but others life threatening disease. But since I have a mild case of cardiomypathy that is where my focus is. I am trying to keep it under control with meds, diet and excerise. Everything I've read about it is very promising. I really get tired of all the talk about treatments instead of cures. Everything in the medical and insurance world revolves around big money. Treatment is big money, period! When I read and see some of these organizations making millions from donations only with a small portions actually going towards research for a cure make me sick. They have a formula for everything, yes, including life expectancy. Some protocols in treatment for life threatening diseases has no changed in over 20 years. Its takes 8 plus years to get a new medical procedure or drug approved by the FDA. Stem cell or gene therapy is costly and insurance company's will not cover the therapy. In a life and death situation, 50% of something is better then nothing. Let me got off my rampage, I just wish people would look more at a cure instead of treatments. Our government can start providing more money to research cures and start saving more lives.

Hi @fishinpete. I'm fascinated by your assertions four days ago (March 23) about stem cell therapy for Congestive Heart Failure, especially these:

1) Tests on people in the last stage of CHF had 100% positive results (from stem cell therapy).
2) Clinics operating here in the US showing positive results in treating people for cardiomypathy.
3) Other countries have all ready approved and are administrating gene therapy to patients.

I'd greatly appreciate any specific information you have about these three points, and if you could help me find references for these advances, I'd be most grateful.

Also, can any Connect member tell us about personal experiences in getting or exploring treatment at Mayo Clinic with stem cells for CHF?
Martin

I am not a doctor nor a scientist. I have not have any experience with stem cell therapy. First of all human embryonic stem cell therapy is a medical procedure and not treatment, let alone very controversy among religious groups. That's when politics and big money becomes involved. It is used to repair and replace damaged heart tissue and other life threatening disease. In 2015, 11 patients received stem cell therapy who were in their final stages of CHF. They all had a 70% mortality rate within 2 years. After 36 months all are still alive with a 40% reduction of scared tissue with a higher EF. I would call that a 100% success. Published by; Journal of Cardiovascular Translation Research. Another publication I found is the "Health Site, heart/diseases and conditions Stem cell therapy for various diseases. The Guadian US Edition talks about trials. Currently there are 52 Stem cell clinics across Europe. The first (Halartor) 2014 Great Britain being approved to administer stem cell therapy to restore ones eye sight. A Clinic in Mexico called Navastern approved and offers therapy, Stem Cells of America (not approved) offers therapy and testimonials of patients with cardiomypathy that has actually increased ones EF. I have not found a clinic here in the US that has been approved. I know there is a lot more to be done with this type of therapy, but everything that I have read the procedure is safe. The worst that can happen is the donor cells can be rejected or it may take more then one procedure at a large cost. I am just saying in this country it takes a lot of big money and politics to get a medical procedures approved by the FDA. It could be years before it approved, but people should stay applying pressure on their senators and congressman. This country and Insurance companies has formulas for everything and yes life longevity. It takes 8 plus years for just about anything to get approved by the FDA. Everything in this country is about treatment and not a cure because it's a big business. Just my personnel view, some may feel differently. But if I were in the final stage of CHF, 50% of something is better then nothing!

Thanks for your detailed response, @fishinpete. I'll start tracking down your references later today. Meantime, I note your adding the key term "embryonic" to describe the stem cell therapies you have in focus. That's one of several sources of stem cells (and the most controversial politically due to objections from antiabortion quarters). Embryonic stem cell therapies are, in general, not approvable in the US under current law, as I understand it.
Martin

@predictable, I do not believe that "embryonic stem cells were used in the 11 patient trial. I can say a friend of mine had stem cell therapy on his knee instead of having a replacement. They took "growth cells" from his DNA and cultured the cells in a test tube. Then injected them into his knee. 8 months later he has new cartilage growing and he's up and around at almost at 100%. I know we are talking apple and oranges here, but from what I have read, the US is behind the 8-ball in stem cell therapy. There's a wealth of new information out there that I haven't even touch on yet. Good luck!

I don't know that much about stem cells but this gives us all hope that are in pain,fibro,m.s and so on thanks