Improvement

Hi. I have had idiopathic cardiomyopathy for at least 10 years with EF down to 18. My echoes were using the word "severe" as the main descriptive word, much to my frustration as I thought I was doing all that I could to try to make it better. I have been very careful about diet, salt, exercise (although way too tired to do much). I have been a patient at Stanford for the last 4 years. The doctor told me I needed a bivent pacemaker and I just could not bring myself to do it. I really wanted to keep everything as natural as I could. It was so very hard to succumb to taking even the medications, but saw that I had no choice. Well to make a long story (as we all have) shorter, I finally went in for the ICD/biventricular (3 lead). I found the procedure and recovery time not too difficult. I had done some research and there was a study done in France where a small percentage of the patients who had this installed were able to regain complete heart function. This was my hope, but I knew it was a long shot. Well, to my amazement 7 months after the pacemaker placement my heart is now normal size and all the measurements are within normal limits. I feel like my old self. I had been told that I could die any minute by my doctor a number of years ago. Now I just feel thrilled every day to be alive and energetic. My objective from the start was to somehow find out what was causing the cardiomyopathy, as I figured then I might have a chance to stop it and happily I have now stopped it and reversed it too. I really hope my posting this will be encouraging (which we all desperately need).

5 Comments

Really happy 4 cu

by sputnick - 2009-06-11 01:06:28

That is such a lovely story. So glad for you, enjoy every day and wish you a very happy and healthy life from now on in!

Me again

by cherrypie - 2009-06-11 06:06:54

Hello everyone again. I am the one who wrote the account above. My name is Leslie. I have to tell you I am so thrilled to see you reading my story because for years I searched and searched for anything positive I could find. I made copies of even small positive stories and they added up. I used this to create hope and that kept me going. At the beginning I knew the feeling of real "gut wrenching" in the middle of the night, knowing that I have a death sentence before my body had a chance to reach old age, so I would go to the computer and search. Through this time too I learned about positive thinking having a good effect on our health and also how using a placebo could even make you better. I decided whatever worked I was game for.
I sincerely hope this gives you all a lift and your health can improve from it. My heart wishes you all well.

wonderful!!

by lb151 - 2009-06-11 11:06:26

So happy for you! That is so great to hear such a good story. I searched for years to find the source of my cardiomyopathy also. I had my ICD inplanted as a precaution and 3 months after it saved my life.
I hope you continue to do well.

Keep it up

by ElectricFrank - 2009-06-11 11:06:30

Your story points out a myth that seems to be a part of modern medicine. The idea that a pacemaker is second best to meds is totally backwards. The meds affect parts of the body other than the heart, we become desensitized to them requiring higher doses, and they have undesirable side effects. The pacer applies a small current directly to the heart and provides targeted support with little side effects.

By the way there was a study about a year ago that showed that people who saw themselves as healthy lived longer. I realize that I see myself as very healthy, but just have a broken circuit in my heart. The pacer fixes that.

best,

frank

SNAP

by pete - 2009-06-12 02:06:03

Hi leslie, Your story reads like mine. I too made a remarkable recovery with a biventricular pacemaker. I too had cardiomyopathy etc. My heart also remodelled itself. I was so weak I could not turn over in bed. Now I can do heavy hard work. Doctors are still trying to take in the remarkable results that are attained with most patients who have this type of pacemaker fitted. My pacemaker is a Guidant contak 2 biventricular cardiac resynchronisation pacemaker. 2 leads fitted continuosly pacing both ventricles and an AV node ablation. Still have chronic AF. Happy pacing Peter

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