Hi everyone.
It has been a long time since posting here for me. I had my myectomy now 15 months ago. Time sure does fly!! Some may remember that I was the first myectomy done at NEMC which kicked off the clinic there being able to be a one stop shopping center for anyone with HCM. I have always had very good treatment there and am grateful they are there...especially since I live right here in Boston and can stop in on my way home from work.
Well, after all this time I went through the usual recovery that most all of you know all too well. I presented a few additional problems however. The pathology of the heart tissue uncovered a new and also rare disease called Sarcoidosis. They found these things called granulomas in the heart. Dr. Maron and Dr. Udelson decided that I would need to be followed very carefully as this disease can cause some of the symptoms that are very like HCM with obstruction--breathing dificulties etc.
Well I had a rough summer with deaths in the family and general bad cards beaing dealt so it was easy for me to just cancel all my appointments and forget I had these problems. Now this fall I got a call from Doc Maron and he was concerned he had not heard from me so I comitted to go in and get a follow up.
One year later the sarcoidosis is in check (no prednisone thank god), but, and now I finally get to the jist of my post, when they checked me over at the HCM clinic I show zero obstruction but a significantly reduced ejection fraction. They tried not to get me too worried and said they thought it was the sarcoid causing it but I have a doctor who in the literature is one of 2 nation wide authorities on sarcoid and he said it is NOT the sarcoid. So now I am looking at???????? I understand that the EF is a good measure of the overall efficiency of the heart. I never really recovered from this and still have breathing problems a a general lack of energy. I turn 40 in November and thought by now I would be feeling better than I do.
Is this something any one else has experienced?
What drugs do they throw at a low ejection fraction?
Anyone have any ideas? I am waiting to hear back from the doctors as to what they conclude but in the mean time this is a good place to find some advice or learn more about what this all means.
Thanks a bunch.
Doug
It has been a long time since posting here for me. I had my myectomy now 15 months ago. Time sure does fly!! Some may remember that I was the first myectomy done at NEMC which kicked off the clinic there being able to be a one stop shopping center for anyone with HCM. I have always had very good treatment there and am grateful they are there...especially since I live right here in Boston and can stop in on my way home from work.
Well, after all this time I went through the usual recovery that most all of you know all too well. I presented a few additional problems however. The pathology of the heart tissue uncovered a new and also rare disease called Sarcoidosis. They found these things called granulomas in the heart. Dr. Maron and Dr. Udelson decided that I would need to be followed very carefully as this disease can cause some of the symptoms that are very like HCM with obstruction--breathing dificulties etc.
Well I had a rough summer with deaths in the family and general bad cards beaing dealt so it was easy for me to just cancel all my appointments and forget I had these problems. Now this fall I got a call from Doc Maron and he was concerned he had not heard from me so I comitted to go in and get a follow up.
One year later the sarcoidosis is in check (no prednisone thank god), but, and now I finally get to the jist of my post, when they checked me over at the HCM clinic I show zero obstruction but a significantly reduced ejection fraction. They tried not to get me too worried and said they thought it was the sarcoid causing it but I have a doctor who in the literature is one of 2 nation wide authorities on sarcoid and he said it is NOT the sarcoid. So now I am looking at???????? I understand that the EF is a good measure of the overall efficiency of the heart. I never really recovered from this and still have breathing problems a a general lack of energy. I turn 40 in November and thought by now I would be feeling better than I do.
Is this something any one else has experienced?
What drugs do they throw at a low ejection fraction?
Anyone have any ideas? I am waiting to hear back from the doctors as to what they conclude but in the mean time this is a good place to find some advice or learn more about what this all means.
Thanks a bunch.
Doug
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