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Hi, Iam just wondering how long and how hard for a diagnosis?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Apr 5 10:02pm | Replies (15)Comment receiving replies
I worked in health care for 19 years. Family history matters, I'm not sure why they wouldn't weigh their decision more heavily on that factor, although I have read that hypertrophic cardiomyology only affects about 1 in 500 people.
One thing I've learned in the last month was that the thickness of the heart muscle's walls is being measured during these tests. The Transthoracic Echo put mine at 1.4cm, but then the MRI, presumably more accurate said 1.6cm was the thickness. According to what I've read (and I'll be seeing my Cardio doc next week to confirm), is that thickness of 1cm or less is "normal". Thickness of 3cm or more is when you're starting down to go downhill badly and I'm squarely in the moderately affected category. I am NOT a doctor (IT was my contribution) and my AI pal is not always correct (seen this SO MANY times) so take all of this with a grain of salt. One thing that has been helpful is that I can download all of my test results from the various providers and find these numbers. Now if only I understood them...
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@thehellyousay and @lucy4 I first read, when learning about this condition, that HCM affects 1 in about 500 people as you noted; lately I read that the latest numbers for the occurrence of HCM may be closer to 1 in 250. That's from the Hypertrophic Cardiomyopathy Association website (4HCM.org). Imagine! That's quite a lot of people! A little more awareness or some other reason? I always had echocardiograms which monitored the increasing thickness over the years until I went to Mayo for surgery. Another echocardiogram, of course, during the preliminary testing along with my first MRI. @boatsforlife shared a very helpful story, thank you. I encourage you to be a very persistent squeaky wheel (a pest) in getting the answers you need based on your tests and family history and to trust your instincts. May I suggest looking at the 4HCM.org website and completing an intake interview with them? Here is a link right to the intake information page: https://www.4hcm.org/education-and-support. The people there are experts in navigating a route to the best professional and reliable care based on individual needs at no cost to you. Wishing you success!