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.

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

REPLY

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.

REPLY
@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.

Liked by bangel

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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

Liked by bangel

REPLY
@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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Yes the cost is expensive. The clinic in Mexico called Navastern charges $8000.00 per therapy session. If your waiting for the FDA to approve stem cell therapy and insurance picking up the costs, don't hold your breath for any length of time. Maybe in the next generation parts of the therapy will be approved and healthcare will cover a portion of the costs.

Liked by bangel

REPLY

@fishinpete
Hello, does the therapy really work? And about how many therapy sessions does one need to recover?

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Great question @bangel…But I don't have all the answers. I have yet to speak with anyone who has used stem cell therapy for their heart. All I have done is read testimonials and research reviews. I take the time on a daily basis and read everything that I can. 3 years ago I found out that I have mild case of cardiomypathy, non-schemic as of 2 weeks ago I'm still in the mild stage. But my EF is slowly decreasing. I know it is a progressive diease. I have increased my diet and excerise, hoping to level it off for awhile longer. Being 67 I push myself hard while exercising, but as I grow older excerise becomes harder. My EF has yet to improve. I get frustrated by being told there really is no cure, but if you take these pills it will slow your heart down and help you live longer. Not the way I was planning to go out. I would like to have options with my life. . If I were in the final stages of CHF I'd be willing to try anything, as everyone else. Getting back to your question, so far everything that I have read, it has worked. Some may require more therapy then others. And there are probably few cases that it didn't. I mentioned in a earlier post of 11 patients in stage 4 CHF with a 70% mortality rate within 2 years. If I remember correctly that was in 2014. Well, all are alive with a much improved heart function, living a normal life. Wish I could have jump in on that study, but I think you have to be on your death bed to get involved. My research, is to find a reliable clinic, a clinic that has been around for awhile and shows positive results with improving the heart function. It's a shame that we have to travel outside of the US, spend a lot of money and take chances. There isn't a doctor or hospital around that would support stem cell therapy and give you their blessings because it is yet to be approved by the FDA. Let along embryonic stem cells that is totally illegal here but legal in many others country's. I suggest that you do your homework if your thinking about it, it may not be for you. This country may be the leader in medical technology, but so are other country's and they may not be owned by pharmaceutical and insurance corporations.

REPLY
@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.

Jump to this post

Good question, Pete. You can read about all the heart conditions being investigated on the Van Cleve Cardiac Regenerative Medicine Program website: http://www.mayo.edu/research/centers-programs/van-cleve-cardiac-regenerative-medicine-program

REPLY
@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.

Jump to this post

Thanks for the list will put it on my things to do list.

Check out my Facebook page

/martin.graham.5811

For up to date analysis on my thesis of molecular biology titled 'The theory of Universality'

Good luck
Martin Graham

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@cynaburst

So sorry to hear about your daughter. Unfortunately, it is not possible for us to guess what might have caused her serious disease. There are some genetic forms of cardiomyopathy which do cause congestive heart failure in young people. Has anyone recommended that the surviving members of your family undergo genetic testing to see if this might be the case in your family? Also, if there are any blood samples left from your daughter, it may be possible for you to have those tested for genetic forms of cardiomyopathy.

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I am so sorry for your loss Brian, but I feel it's a blessing I landed on your post. I have just been diagnosed with pulmonary hypertension with eisenmegar syndrome. That means the right side of my heart is enlarged and I have a hole in my heart. It's a miracle that something was spotted on a chest x-ray which led to this recent diagnosis. Everyone is born with a hole in the heart and for most, it closes up naturally. Others can go their whole life like that and never know. The rest are at great risk and don't even know something is wrong until a heart attack happens. In my case it is not only herititery, but I also have a heart murmur. I am healthy and 49 yrs old. I was supposed to have my gallbladder removed but was cancelled, but the pre-op physical found this disease. I am in the process of lining up open heart surgery. I don't want to die, but even more I don't want to leave you knowing you just want to know why. There was nothing you could do and no signs of heart problems because your daughter was a healthy young woman. From here on, encourage her blood relatives to get checked out, staring with a chest x-ray. God bless you and know He is with you during this difficult time.

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Hello fam! How are you all doing?

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@bangel

Hello fam! How are you all doing?

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@bangel

I'm good, how are you? Any new appointments scheduled? How are you feeling these days?

Teresa

Liked by bangel

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@bangel

Hello fam! How are you all doing?

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@hopeful33250.I'm feeling much better, except that I always feel full. A very small amount of food tends to fill me up. My next appointment is in two weeks. Generally, I feel more energetic. I've started taking long walks.

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@bangel

Hello fam! How are you all doing?

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@bangel

I'm glad to hear that you are walking! That will help with the full feeling and will also give you some more energy.

I am glad that you keep me updated on your progress. I look forward to hearing from you again.

Teresa

Liked by bangel

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