Congestive Heart Failure in young people

Posted by brian Jeronimus @brian_j, Dec 14, 2016

My daughter, Heather, passed from Congestive Heart Failure at the age of 25. This was a total shock as she was very healthy and no examinations have ever revealed this possibility. She did have a kidney infection in Dec 2015 and went for diagnosis twice when she had the symptoms. Both times the doctors just passed it off as anxiety. She died in Feb 2015 at Tampa General. The surgeon tried to install VADs on both sides of her heart. When he came to us in the waiting room he said he never saw anything like the scars inside her heart.

I would like to know if anyone else has a story like this. We can only surmize that Heather must have had a dormant virus that was activated by something she took or was exposed to. I wished now we would have had an autopsy done but there may still be no way of finding out how she contracted this evil in her heart.

@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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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.

Hello @bangel

I've been thinking about you. You must be near your appointment with the doctor regarding your weight loss surgery. I hope that your appointment goes well.

I look forward to hearing from you again.

Teresa

Liked by bangel

@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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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

@hopeful33250
Thanks a lot for caring and thinking about me. I have been at home, just trying to get used to my diet and meds. My surgeon insists that we wait a few more weeks and do an echo test. He still insists that it's possible for me to undergo a gastric sleeve now, instead of the balloon now and sleeve later. So I'm waiting and hoping for the best. Hope you are doing good yourself?

@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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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!

@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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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

@bangel

@hopeful33250
Thanks a lot for caring and thinking about me. I have been at home, just trying to get used to my diet and meds. My surgeon insists that we wait a few more weeks and do an echo test. He still insists that it's possible for me to undergo a gastric sleeve now, instead of the balloon now and sleeve later. So I'm waiting and hoping for the best. Hope you are doing good yourself?

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It's good to hear that from what you say, it sounds like you are making changes and doing what you can to make a difference in your life; whether it is meds or diet, or both! I'm not a health care provider, so my information is from what I've heard or read. Gastric approaches are not without risks and even when successfully performed aren't a guarantee in and of themselves to fix all interrelated problems. Getting used to healthy choices and figuring out what meds work for you are vital in ensuring any other procedures performed have the best chance of being successful. You'll get there, but it's not going to happen overnight, so that's going to take commitment and the ability to keep yourself motivated with these changes. As I said earlier, start with small goals that are attainable to keep from getting discouraged. A little progress, no matter how small it seems or feels, is still PROGRESS! Keep up the great work!

Liked by bangel

@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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@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!

@gr82balive
Yea, I agree with you. Thanks a lot. I am doing quite well with the diet, the only thing that seems to be quite difficult for me is eating without salt or bouillon cubes. It's quite painful, but I'm learning to accept my faith. My cardiologist told me today that it won't be permanent. Lol, maybe he wanted to console me. I hope you are doing good yourself?

@bangel

@gr82balive
Yea, I agree with you. Thanks a lot. I am doing quite well with the diet, the only thing that seems to be quite difficult for me is eating without salt or bouillon cubes. It's quite painful, but I'm learning to accept my faith. My cardiologist told me today that it won't be permanent. Lol, maybe he wanted to console me. I hope you are doing good yourself?

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What he probably means by not permanent is eliminating salt completely forever. Once you get your other conditions under control, it might be possible to adhere to a low-salt diet instead of a no-salt diet. Have you tried any of the salt substitutes to flavor your food? Not all of them are salt free so read the labels, but many are very, very low, or no salt at all. The best is to cook your food with the seasonings so the flavors are cooked into your chicken. If you sprinkle on top of cooked meat, they don't taste as good that way to me. Keep experimenting with different salt free seasonings so you can keep your taste buds from getting fatigued on the same food, and that way you can keep enjoying your meals and not feel as if you are punishing yourself by having to eat bland food.

@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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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

Stem cell therapy a way out?

@bangel

@gr82balive
Yea, I agree with you. Thanks a lot. I am doing quite well with the diet, the only thing that seems to be quite difficult for me is eating without salt or bouillon cubes. It's quite painful, but I'm learning to accept my faith. My cardiologist told me today that it won't be permanent. Lol, maybe he wanted to console me. I hope you are doing good yourself?

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@gr82balive
I understand, that's exactly what I'm doing. It's hard coming to terms with the fact that at my age, I have to start living like I'm 50. You know, it's really hard to think about the fact that I'll be taking meds all my life, especially when I don't even have a family of my own and all that. I am hoping a miracle happens. I want to enjoy my life to the fullest and live like every young man.

@bangel

Stem cell therapy a way out?

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@bangel, I suspect embryonic stem cells are needed to rebuild heart muscles. If so, the treatment is not legal in the US, except for a few select research projects. We have to stay alert for developments based on that research.
Martin

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