Cardiomyopathy treatments

[21Kay]

My mom found out that she had a form of cardiomyopathy when she was 38. She is now 46, and her meds are no longer helping her heart. Her ejection fracture is 15%, she has a difibulator and a pacemaker, but they are not doing the job they are supposed to because they can not get her heart to slow down enough. She recently started having really bad nose bleeds and is going to the doctor Wednesday. I am really worried about her. The doctors keep saying the next step is a Heart Transplant, but I was wondering if there is any other option that we could try. I just have a hard time believing that with all the advances in technology, science, and medicine that there is nothing else they can do for her. If anyone knows of anything please let me know. Thanks!

[itdood]

My father had a heart transplant back in 1988 due to HF.   He was 43 at the time.  He's now 64, hasn't missed a day of work since returning to work after his short recovery.  

[Donni225]

I was diagnosed with dialated cardiomyopathy in 1996, after my heart stopped for nine (9) minutes.  After the incident an internal cardiodefibrulater was implanted.  I have had the leads replaced once and the battery replaced, after five (5) years.  I have been deemed an "miracle" patient as I have outlived every expectation. Now, I am being "groomed" for a heart transplant.  I don't want a transplant!  I talked to my doctor (at the Mayo Clinic) about the stem cell treatment and he was not encouraging, at all.  I have insurance and Medicare, but because the treatment is not approved by the FDA, neither insurance will pay for the treatment.  They will; however, pay for the transplant, for which I have to put my name on a list and wait for someone else, with my blood type, to DIE or better yet, be KILLED!  I don't have the money to travel overseas for the stem cell treatment, as I have not been employed since 1996, so I am searching for a study, needing patients with dialated cardiomyopathy, to volunteer.  If anyone knows of one or can suggest where I might look please let me know. Thank you!  

[Jo846]

Most of the Doctors in our country are not informed on Stem Cell procedures - because the procedure is not FDA approved at this time.  Your Mom's Doctor is incorrect on where they get the stem cells.....I had a blood draw; from that blood draw my own stem cells were replicated.  23 Million Stem Cells were injected into my heart muscle and vascular system - via an angiogram.  80% of those 23 million were tagged for my heart.  I will be glad to put you in touch with the Heart Clinic, in Florida, that I used.  The procedure is not covered by insurance - again because of lack of FDA approval.  Testing is being done in the U.S. in Chicago and Texas - might be elsewhere that's the 2 I know.  The problem with getting in on a "study" is that it is a blind study.  I didn't have enough time(health wise) to risk being part of the blind study that does not get the stem cells!!!  I am diagnosed with "end stage heart failure." I have met people that have had the stem cell procedure - it has changed their life around.  I am anxiously awaiting my results and "girlfriend" you will see me on national TV - shouting from the rooftops - with the results!!  Love your Mom...she is lucky to have you and I know she has extra encouragement to live with that little grandbaby.

[21Kay]

I talked with my mom last night and I told her about the stem cell placement. She said that she had mentioned that to her dr. before and they said that she would not be a canidate  because her heart is too damaged that if they pulled good cells from her right side that her left side would be too weak to fix itself. I was wondering if you had heard of that. Something being so weak in the body that it wouldnt try to fix itself? I dont trust this dr. because I feel that he could have done something for her earlier instead of waiting til the last minute to try and get her fixed. Just like she has had the pacemaker and difib in for a year now and they cannot get it to work. They didnt even start worring about that until a year after she had it put in. They kept telling her that it takes time. To me at six to nine months if it wasnt working right they should have tried to fix it then. I am just mad and cant believe what is going on. I did not expect to have a very ill mother especially at her age and am very worried about her. If you could just let me know what you think. Thanks for all your help!

[21Kay]

That was my mom's problem. They said that she had a viral infection that attacked her heart. Then her ejection fracture was 18% and it went up after medications, but they slowly quit working. She is just tired all the time and the whole family is really worried about her. I have a one year old that just adors her and I dont want him to grow up with out her. I will definatley tell her about this and if she has any questions I will let you know. Thank you so much for the information. Let me know what your results say.

[Jo846]

I am a female, 61 years old,and also have a defib and pacemaker.  Please don't hesitate to contact me if you want further information.  Insurance does not cover this procedure

[Jo846]

You bet there is!  I was diagnosed 1 year ago with a viral infection to my heart.  Ejection Fraction 15.  Only help would be a heart transplant - and I am not interested.  I just returned from the Dominican Republic.  I had 23 Million of my own Stem Cells placed back into my heart muscle and vascular system.  I was the 510th person to have this procedure done by an American Cardiologist.  Unfortunately6, it can't be done in the USA because it does not have FDA approval!!!!  I am awaiting the results of the 23 Million Stem Cells.  Please note, these are replications of my OWN Stem Cells - not embryonic - so there is no rejection factor involved.