When I was 39 years old, my family and I were heading to our nosebleed seats at a baseball game. When we reached our seats, it felt as if my heart was jumping out of my chest. I was gasping for breath, my left arm had gone numb, and my face was ghostly grey. I thought I was having a heart attack. I was married with three young children and in my last year of law school.
Over the next six years, my health deteriorated quickly as I tried to launch my new career as an attorney. I couldn’t keep up the pace as symptoms of chest pain, dizziness, shortness of breath, and fatigue increased. I would sleep in my car during lunch hours to get through the day. When the weekends came, it became impossible to do the activities that my kids loved to do as a family: hiking, bike riding, and exploring new places. I would even fall asleep watching movies!
I saw many doctors and had many tests and was told nothing was wrong with my heart. I thought I was crazy and my husband at the time did too.
After six frustrating years, I was diagnosed with hypertrophic cardiomyopathy. I finally had a diagnosis.I was half terrified that I had this incurable heart disease and half relieved that I wasn’t crazy.
Medication management proved ineffective as my heart failure symptoms were quite severe. I had myectomy surgery (open-heart surgery to relieve obstruction of blood leaving the heart) six months after diagnosis. The surgery only provided minimal relief and my symptoms continued. I was unable to return to work and my life unraveled personally, financially, and emotionally. After another battery of tests to look for a reason for constriction or obstruction, it was determined that I needed a mitral valve replacement and a second open-heart surgery was scheduled six months after the first one. Upon waking from surgery, the surgeon told me that they found more thickened tissue to be removed and the mitral valve was now working fine. I was so angry that I had needed a second myectomy and struggled with a difficult physical and emotional recovery. And still, my symptoms persisted and continued to severely impact my quality of life.
I have chest pain and shortness of breath with just the slightest exertion - a few steps up the stairs, hurrying to cross the street, or taking a shower.
I made the difficult decision to file for disability. I keep my law license active with the hope that I can eventually return to some meaningful level of work.
My now ex-husband asked for a divorce shortly after my second open-heart surgery and left Florida a year later. I raised my three teenagers by myself as a single mom. I learned ways to manage my symptoms and be there for my kids.
I used therapy, medications, and meditation to deal with anxiety and bouts of depression. It has been a difficult learning curve to adapt to this new lifestyle. I have learned to appreciate the small victories and beauty in life, but my heart and HCM are always on my mind.
Since Lynda first shared her story, Lynda progressed to the point where she needed a heart transplant. So what now? Is she on the transplant list? Has she had a transplant? Yes, she had a heart transplant in December 2021 and is recovering and taking her life back with each new day!
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.
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