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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
Thank you! This has been very helpful. I am in the Earlier stages of being diagnosed with some form of HCM. This is my second time reading your comments and they have been very helpful. I’m being treated at the university of Pennsylvania in Philadelphia. I have two major tests, outstanding all the other big tests have been completed. Stress test, etc. I now have an cardio MRI scheduled and they also want a sleep study. I understand the importance of the cardio MRI unfortunately I had to delay it until October due to travel plans, but I’m wondering the importance and necessity of the sleep study as it involves driving to Philadelphia In terrible traffic, parking the car overnight, etc. I am 74 years old and in very good health otherwise I have always been extremely athletic and continue to be. Any thoughts you have regarding the testing would be appreciated like which tests are most definitive. Thanks again for your comments. I will be going on the HCM website as per your advice.
Replies to "Thank you! This has been very helpful. I am in the Earlier stages of being diagnosed..."
@hs60marg I am very glad to read that you are receiving care at the U of Penn in Philadelphia, a COE (Center of Excellence) listed on the website of the Hypertrophic Cardiomyopathy Association. They are thorough with all that testing, aren't they? Please ask your doctors about why a sleep study is recommended, we cannot give medical advice, there must be a reason if it is suggested. How is your sleep? Sleep apnea is considered dangerous. For many of us, sleep patterns change as we age. As with HCM, if you ask 100 people about their experiences with that disease, there will be 100 unique stories, I'll bet we all have our unique sleep tales.
Debra @karukgirl noted an important link to read. Here is an additional link which explains the different kinds of hcm along with possible treatments: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/diagnosis-treatment/drc-20350204
Yes, what an inconvenience to need to go there, park your car overnight, and all the rest for a sleep study! I have a couple of suggestions. Would it be possible to find out if there is a reputable sleep study place closer to your home that would work with your doctor? Do you know someone (relative, friend) that lives near U of Penn where you could park your car overnight? Your relative or friend may be able to drop you off/pick you up or you can take a taxi, Uber or Lyft to the sleep study site.
I am glad @emo44 had so many suggestions for you and was able to describe his experience with Apical HCM. On the 4hcm.org website one can sign up for Zoom discussions/informational meetings which you may find helpful in learning all you can.
Knowing as much as possible helps you understand what the doctors explain as much as possible. Knowledge also helps you generate questions to ask.
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@hs60marg ,
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.