Hypertrophic Cardiomyopathy - “It took me three days to even learn how to say it!”.
Elizabeth Wessman is originally from Boston, MA and currently lives in Hawaii. She was diagnosed with Hypertrophic Cardiomyopathy (HCM) in January of 2022 at the age of 51. Looking back now, she feels like she may have had HCM all her life. She recalls episodes of dizziness and passing out when she was 6 years old, but doctors told her parents it was an issue with her inner ear. As a freshman in high school, she would have wheezing episodes while running during track, and her doctor diagnosed her with exercise-induced asthma. At 23, just before she was married, a doctor found that she had a heart murmur but told her that it was probably something she had had her whole life. The doctor suggested she be followed up by a cardiologist. The cardiologist told her that her heart murmur was benign and to come back in 5 years. Elizabeth continued to be seen by cardiologists every five years but it was always a different cardiologist due to several moves across the country with her husband’s military career.
As time passed, Elizabeth started noticing that walking up hills and stairs was getting more difficult. She thought it was “just part of getting older” or that she was getting out of shape. In November of 2021, Elizabeth was on a short walk with her family on a beach in Hawaii, and her heart started “going crazy”. She was dizzy and almost passed out, so she sat down and drank water until it passed. Her husband encouraged her to get it checked out. The next day she went to the emergency room as instructed by her PCP. She said, “the next thing I know, a team of heart doctors were standing around me, and they told me I may have had a heart attack." They ran some tests and suspected that she had Hypertrophic Cardiomyopathy (HCM) but did not “officially" diagnose her. She would need further testing. She remembers asking them to write it [Hypertrophic Cardiomyopathy] down for her because she had never heard of it before. According to Elizabeth, “it took me three days to even learn how to say it!”. Consequently, Elizabeth looked up HCM on the internet and found the Hypertrophic Cardiomyopathy Association (HCMA).
From the information provided on the HCMA website, Elizabeth learned about HCMA Recognized Centers of Excellence (COE). There were two located in her hometown area of Boston, Massachusetts. She thankfully received a referral from her local cardiologist in Hawaii to be seen at a COE in Massachusetts where she was officially diagnosed with HCM in January of 2022. According to Elizabeth, “It's not that I was thankful I have HCM, but I was just thankful I had my questions answered and that we could move forward instead of just thinking I was out of my mind. I was always active but could no longer do as much; I felt old and frustrated.". After trying a few medications that resulted in side effects with minimal relief, the COE doctors recommended she have a myectomy. After careful consideration, and with lots of support from her family and her COE team, she opted to do it. She had her myectomy surgery in March of 2022.
Since recovering from her myectomy surgery, Elizabeth says,"I literally smile going up stairs and hills now; it's such a celebration. I feel better than ever! The surgery gave me my life back. I feel so blessed. I hope that sharing my story of getting a proper diagnosis and appropriate care helps even just one person. I don't know what my life would have been like if it hadn’t been for the resources provided by the HCMA."
Elizabeth has volunteered to become a member of the HCMA’s Health Equity Committee. To her, it is essential that other people with HCM have access to the proper diagnosis and care, especially those in remote locations away from COEs.
Please share this story to bring awareness to Heart Month!
To learn more about accessing care at a HCMA Recognized Center of Excellence, go to https://4hcm.org/center-of-excellence/.
To learn more about hypertrophic cardiomyopathy (HCM), go to https://www.4hcm.org.
#4HCMAwareness #HCMStrong #HCMDay #4HCMWarriors #4HCM