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.

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

@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

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@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.

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@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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Thanks @bangel. This web site gives us a basis for optimism, but not yet for celebration. The Stem Cell Institute is located in Panama. Its medical staff is made up of several Panamanian medical school graduates. The written material is very persuasive and promotional in tone. The Institute says its clinical trials' reports are published on the clinical trial list at the National Library of Medicine (which makes no judgments as to quality of the therapies being tried and gives no assurances that trials on the list are ready for human application).

Even so, a number of American medical institutions have permitted the Institute to list them as interested in the technology, and this gives encouragement for following the work of the Institute and asking our own doctors about a referral to the Institute for diagnosis and treatment suggestions. A key issue for me is cost -- the Institute's charges for the therapy, the cost of travel and hotels in Panama, the duration and number of treatments needed, etc. A second issue is whether the therapy can be transported to the US and initiated or continued here. Lets keep looking for additional promising information.
Martin

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Hi all,
I'd like to add to this discussion about stem cell therapy (also known as Regenerative Medicine) and heart issues. It can be really difficult to tell which stem cell therapies and regenerative medicine practices are effective and which institutions are offering evidence-based proven therapies. In fact, recently the Food and Drug Administration (FDA) released a stern warning against unproven stem cell therapies. The FDA issued these two press statements: https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm573427.htm and https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm573431.htm.

To help people learn more about the proven therapies and the promise of developing therapies, Mayo Clinic offers a free telephone consult service. When you call the consult service, they can 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.

Cardiac regeneration is an area of focus for Mayo Clinic. The overarching vision for the cardiac regeneration program at Mayo Clinic is to develop new therapies to cure ischemic heart disease. See more info about clinical testing that span the disease spectrum here: http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/cardiac-regeneration

You can also read great articles about successful use of stem cells for babies born with Hypoplastic Left Heart Syndrome (HLHS)
- Researching innovative solutions for rare heart defect https://connect.mayoclinic.org/newsfeed-post/researching-innovative-solutions-for-rare-heart-defect/
- Breakthrough Stem Cell Treatment for HLHS Patients https://connect.mayoclinic.org/newsfeed-post/breakthrough-stem-cell-treatment-for-hlhs-patients-27fb46/
- Misconceptions of Stem Cell Research https://connect.mayoclinic.org/newsfeed-post/misconceptions-of-stem-cell-research-25b20d/

There is hope and there is hype. It's important to query and know the validity of your sources of information. Happy to see the sharing and cross-referencing of information here.

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@colleenyoung

Hi all,
I'd like to add to this discussion about stem cell therapy (also known as Regenerative Medicine) and heart issues. It can be really difficult to tell which stem cell therapies and regenerative medicine practices are effective and which institutions are offering evidence-based proven therapies. In fact, recently the Food and Drug Administration (FDA) released a stern warning against unproven stem cell therapies. The FDA issued these two press statements: https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm573427.htm and https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm573431.htm.

To help people learn more about the proven therapies and the promise of developing therapies, Mayo Clinic offers a free telephone consult service. When you call the consult service, they can 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.

Cardiac regeneration is an area of focus for Mayo Clinic. The overarching vision for the cardiac regeneration program at Mayo Clinic is to develop new therapies to cure ischemic heart disease. See more info about clinical testing that span the disease spectrum here: http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/cardiac-regeneration

You can also read great articles about successful use of stem cells for babies born with Hypoplastic Left Heart Syndrome (HLHS)
- Researching innovative solutions for rare heart defect https://connect.mayoclinic.org/newsfeed-post/researching-innovative-solutions-for-rare-heart-defect/
- Breakthrough Stem Cell Treatment for HLHS Patients https://connect.mayoclinic.org/newsfeed-post/breakthrough-stem-cell-treatment-for-hlhs-patients-27fb46/
- Misconceptions of Stem Cell Research https://connect.mayoclinic.org/newsfeed-post/misconceptions-of-stem-cell-research-25b20d/

There is hope and there is hype. It's important to query and know the validity of your sources of information. Happy to see the sharing and cross-referencing of information here.

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Thanks for the additional information. You mention the Mayo clinic is conducting research for schemic heart conditions, how about non-schemic conditions.

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@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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@bangel

It is good to hear from you! I'm glad that your surgeon is proceeding slowly. He sounds like a good person. I'm doing OK, thanks for asking.

When is your next appointment? Look forward to hearing from you with further updates.

Teresa

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@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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@hopeful33250
Tee, I'm doing quite well. My next appointment is tomorrow.

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