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I was recently diagnosed (yesterday) with Apical HCM
Hypertrophic Cardiomyopathy (HCM) | Last Active: Aug 30 12:38pm | Replies (9)Comment receiving replies
Glad to help. My ApHcm was originally diagnosed from an echo when a very sharp young lady picked up on the fact that in addition to thickness I also had a pouch on the apex of my heart . Local test called it an aneurysm, Mayo cardiologist calls it a pouch as it is not large enough to be an aneurysm. After echo, I then did have a cardia MRI which confirmed the diagnosis. Then I was able to see a cardiologist at Mayo. I did not have a sleep study, but believe that often happens. The first night at Rochester, I did wear a pulse oximeter that recorded my breathing and I believe (no was never told this) that based on my nighttime breathing, I did not need a sleep study. So, I can't really answer that question for you. When I had my first visit to Mayo, they redid all the tests I had had with the exception of the MRI (I have not had another one) and added a few more tests including an exercise stress test. Our HCM journeys are all different but try to relax. It sounds like you are in good health. When first diagnosed, I had no medications and my wonderful cardiologist told me to just live my life. But then I developed Afib and now do have medications but still can do anything I want. Good luck and keep us posted.
Replies to "@hs60marg , Glad to help. My ApHcm was originally diagnosed from an echo when a very..."
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@emo44 early in my journey, I was using the cardiologist nearest me in southern Delaware. They put a sleep monitor on me for 14 days then did a lengthy stress test. With other tests to follow. However, the day after the stress test they called me to come in right away. Their initial feeling was that I needed either A stent or a pacemaker. With that news, I immediately took those results to the University of Pennsylvania, first to a Doctor Who did exclusively pacemakers. He looked at the sleep study and said there was a minor abnormalitythat I did stop breathing some overnight, but he did not seem concerned. He informed me that I did not need a pacemaker and referred me to his colleague. That would do the test for stents where they go in with the wire into your heart. That was scheduled two days later, and he determined that I did not need a pacemaker however he saw thickening of the heart and some other small things. they have recommended doubling my statin to 40 MG, which I have always been on At 20 MGbecause of familial high cholesterol. And that I should start taking a baby aspirin. I have also been on losartan 100/25 for many years because of Family related high blood pressure. I have tracked down their hypertrophic cardio myopathy Group at U of Penn. Even though the MRI is still outstanding, I am asking them to move my care to this group. Interestingly, I’m kind of wondering now if the Family history of high blood pressure and high cholesterol was a clue to the hereditary factor this. Although I have three older brothers and none have had this particular heart related disorder in fact, they have had no heart trouble at all. The oldest brother died at 90 with no heart problems but high blood pressure. The next to the oldest brother died at 84 after five years of Alzheimer’s and the youngest brother, the one just older than me is now 80 he is a avid runner he is my height, 5 foot 10 and weighs 130 pounds Lol still running every weekend in races etc.. so the hereditary factor remains a mystery. Getting this down and writing is very cathartic for me