My name is Tawni. I’m 27 years old and I have HCM (as for right now, it’s non-obstructive). HCM stands for Hypertrophic Cardiomyopathy and is the thickening of the heart muscle. It occurs in 1 in 500, and it is more common than muscular dystrophy, cystic fibrosis, and AIDS in the United States. HCM is the most common identifiable cause of sudden death in young people and is the leading cause of death in competitive athletes according to USNews.com.
My mom has HOCM (which is obstructive, hence the O), my grandma, her mother, had HOCM also, and it is believed that my great-grandma also had HCM (but as technology wasn’t as great back then, this was never fully confirmed). Grandma had received a heart transplant when I was 13 years old, but unfortunately, she rejected the heart as it was simply too strong for her body after years of living with a HCM heart.
As long as I can remember I’ve had the same symptoms as my mom, only not as intense. Shortness of breath, dizziness, severe head-rushes, and palpitations especially brought on by certain foods. I knew early on that I had HCM, it basically seemed inevitable.
My pediatric cardiologist, Dr.Something-or-other-Green, always said that I did not display signs of HCM, even though I told him about my symptoms. I’ve had echocardiograms every couple of years since my mom was officially diagnosed. When I went to Mom’s doctor, after I was 18 years old, he also said that I did not have HCM, and that my symptoms were induced by over consumption of caffeine. He was… let’s just say that he was not the sharpest tool in the shed. He also told my mom that symptoms of HCM were NOT aggravated by food, and that she was not as bad as she thought she was- it was all in her head.
That was pretty much the last straw. My dad and I made her find a new doctor, one that she and I could both go see. While we were looking, I had gone to my GP, Dr. O, who I’ve been seeing since I was 4 or so, and told him of the symptoms I was having. He advised that we find a new cardiologist, but in the meantime prescribed me Metaprolol, 25mg once a day. As for our new doctor, we landed on a doctor on the Ann Shutz Medical Campus of University of Colorado in Denver, a 45 minute to hour and a half drive (depending on I-25 and I-225 traffic) away from where we are in Colorado Springs.
Three days before Christmas, in 2008, our new doctor took one look at my echo gram and said to me, “You have HCM” (like I didn’t already know this). He said that I should continue on the Metaprolol and therefore, nothing really changed. At least now I had validation for the way that I had been feeling for so long (oh, yay).
On my 21st birthday, my mom had a septal myectomy done at the Cleveland Clinic by Dr. Harry Lever. It has done wonders for mom! She is like a new person compared to how bad her symptoms were before. She had asked Dr. Lever about me, and he said that he’d be interested in meeting with me. When I was 22 I had an Cardiac MRI preformed, and we sent the test to Dr. Lever. He said that my HCM could be displaying in the papillary muscles, but he’d want to take a look at me first hand to say anything for sure.
Mom and I eventually got tired of driving to Denver for our appointments, and found a doctor here in the Springs. He is not necessarily an HCM expert, but he is pretty well versed in HCM, and even studied under Dr. Lever. Last week was my annual appointment/check-up. Nothing much has changed, but I did have one tiny weird episode a couple months ago where I lost part of my vision while I was exercising, and it returned to normal as soon as my heart rate came back down. So of course they want me to do a stress echo+, and wear a halter for 24 hours. I am actually kind of excited to do the stress echo, as I’ve never had one done, and I’ll be interested to see what (if) it shows anything. I think wearing a halter is a waste of time and money (on my behalf) as halters have NEVER shown anything for me, so I am not excited about that.
So people out there in blog land… I think I’ve decided what to make my blog about (finally- it only took 2 years or so)!
Read more about HCM at the links below: