When I was first diagnosed with heart failure in August 2007, I was told my ejection fraction was 25% and I needed to have an ICD implanted. That was immediately after having surgery to close a hole in my heart, and during that surgery doctors came to the realization that sarcoidosis had gone into the heart.
One week after that diagnosis and the discovery that my heart, which only one month before was perfect and was now weak and struggling in my chest, I met with the heart failure specialist about my prognosis.
He recommended that I definitely implant an AICD as soon as possible and also gave me the “transplant” speech. Essentially, according to him (and my sarcoidosis doctor) sarcoidosis of the heart is a one way road to transplantation. The chances of reversal is basically zero and they never saw anyone with cardiac sarcoidosis improve. They stabilize, or decline and they never improve, and in the future, I would need a lung and heart transplant. The statistics also said that there was only a 50% chance that I would live five years and a 20% chance I would make it to ten.
When I heard the news one would think that I would be devastated. Instead I got mad. I became angry that anyone would think that I would just accept a prognosis like that without a fight. I looked him dead in the eye and I said “No! I will not get a transplant and I will get better.”
I remember to this day the expression on his face when I said that. He looked at me first in shock and then his face changed to a smug “Yeah, right!” expression. Since that day I was determined to get better, to defy the odds, ad prove everybody wrong.
Over the years I had many echocardiograms, stress tests, muga tests, and PET scans, and with each test there has always been a slight improvement in my heart’s output. This week my latest echocardiogram shows that my heart has returned to normal size and my ejection fraction is at an amazing 64%! They are just calling it “above 55%” because they can’t believe it is really that high.
My cardiologist told me he is amazed. He never saw anyone or heard of anyone with cardiac sarcoidosis improve, far less by this much.
I am not completely out of the water so this is not a miracle healing but it is by far a wonderful result. I will be having my pulmonary function tests next week and we will see how the lungs are doing. They could be putting a strain as I am showing mild pulmonary hypertension at rest.
All in all, all I can attest this improvement to are following my medicine regimen exactly, herbal and homeopathic supplements, organic foods, a positive attitude, faith in something bigger than us, hope in a brighter tomorrow, living in the present and most of all, the love and support of a wonderful spirit and woman, my wife.
Filed under: AICD, COPD, Defibrillator, Diet, Energy, Family, Health, Heart Disease, Heart Failure, ICD, Life, PET Scan, Pulmonary hypertension, relationships, Sarcoidosis, State of mind, Surgery Tagged: | echocardiogram, ejection fraction, Health, Heart Failure, heart transplant, improvement, life, PET scan, Pulmonary Hypertension, Sarcoidosis, surviving