Meet Sheila McCarr. She wanted to share her story to advance the DCM Foundation’s mission. Here is her story in her own words:
“At the age of 52, I was told that it was highly likely I would need a heart transplant. I had been living with heart disease for many years but this news was a surprise, disappointment, and shock…
My “heart journey” began in 2006 at the age of 38 when I was diagnosed with myocarditis—a heart virus. At the time, I was working and the mother of a two-year-old girl and a three-year-old girl. I thought it was normal to be tired. While visiting my parents in South Dakota, during a leisurely conversation, I had a five-second sharp pain in my heart. The pain quickly went away but my mom insisted I go to the hospital, so I was taken by ambulance to Sioux Falls, South Dakota’s heart hospital, Avera. Being from Saint Paul, I asked to be referred to a cardiologist in Minnesota and I was subsequently diagnosed with myocarditis. My journey begins…
My journey has become a long one —14 years! I want to share my story for many reasons. Heart disease is the number one killer of women and the importance of regular heart screening and genetic testing can prolong your health or save your life. Being proactive with one’s heart health can make for a great, long-lasting, quality of life.
After being diagnosed in 2006, and becoming a heart patient, I have lived with cardiomyopathy for 14 years. In the beginning, it was difficult wrapping my head around the fact that I had a chronic health issue. It was hard for me to accept, given that I was only 38 with young children. In 2007, my son was born. That made me a wife, employee, heart patient, and now mother of three children. I remember telling the doctor, ‘I will be back to normal in no time.’ Unfortunately, my condition has not gotten better. It has gotten worse over time and I have accepted it. Fortunately, my condition has been closely monitored by some of the top heart doctors in the country.
My story continues…a year and a half ago my brother had an MRI of his heart. Knowing that our maternal grandfather died suddenly around the age of 50 and my mom is an LVAD patient, the potential for heart problems in the family was likely. My brother did genetic testing to learn of a heart gene mutation, FLNC (Filamin C Truncation Mutation). My siblings were all tested. Three of the five of us have this gene mutation. In June 2019, the three of us who tested positive for the gene received an ICD, which is a pacemaker/defibrillator surgically placed near our heart.
On August 3, 2020, I went for a run, ate breakfast, and showered—a typical morning for me. Shortly after stepping out of the shower, I passed out. I woke up on the bathroom floor with blood covering my face from a two-inch cut I received during the fall. My husband took me to the hospital where I spent the next three days. Testing at the hospital discovered that my heart was beating at 300 beats per minute causing me to pass out and my defibrillator to jump me twice. Having the defibrillator saved me! While in the hospital, I learned that I would be a likely candidate for a heart transplant.
Since my episode on August 3, I have been doing really well. I am back to being physically active. I walk when I golf, run/walk, bike ride and keep up with three teenagers. I have learned more about a heart-healthy diet. Sleep is a priority every day. Knowing my diagnosis helps me understand and accept living with dilated cardiomyopathy.
Every day, I am thankful to be alive.”
We’re thankful too, Sheila. Learn more about Sheila on her website: www.loveyourheartlife.com
One thought on “One Woman’s 14+ Year Journey with DCM”
Shiela, Thank you so much for sharing your story. What are your plans for having your children genetically tested? Have you received genetic counseling to help answer this question?