10 HEARTBEAT® JANUARY–MARCH 2024 dizziness and lightheadedness, fluttering heartbeat, chest pain, and swelling in the legs, feet and abdomen. If you have symptoms or a family history of cardiomyopathy, you should see a doctor who treats patients with HCM. Your doctor will do a physical exam, get your family history and potentially per- form tests such as an echocardio- gram, an electrocardiogram (EKG or ECG) or a stress test. Genetic testing can also help determine if you have inherited a genetic mutation for HCM and if others in your family should be tested. After Karlin’s diagnosis, she later learned that both her mother and grandfather likely died of HCM or something similar. Managing Hypertrophic Cardiomyopathy Treatments for cardiomyopathy cannot cure it, but they can help slow it down and prevent it from getting worse. Dr. Kapadia says there are two goals for treating cardiomyopathy: improving quality of life and ensur- ing life expectancy is close to normal. Treatment options may include medications to help ease the heart’s workload and reduce symptoms or target the underlying cause of obstructive HCM by reducing how hard the heart squeezes. A non-surgical medical procedure called an alcohol septal ablation can also help reduce the blockage. For more severe cases, a surgical procedure for a cardiac implantable electronic device (CIED) such as a pacemaker will keep the heart rhythm normal, or a left ventricular assist device (LVAD) can help the heart pump more effectively. A heart transplant may be necessary if heart damage from HCM is so severe that it’s caused con- gestive heart failure. Regardless of the treatment choice, life- style changes are important. Dr. Kapadia notes that eating healthy foods, exercising, controlling blood pressure, reducing sugar intake, smoking cessation and limiting stress are all good strategies to help patients with HCM stay healthier. Living With Cardiomyopathy While Karlin was grateful for finally having a diagnosis, she felt lonely after- ward. “I knew there were a lot of cardiac patients [at the hospital and in my area], but I didn’t know how to connect with them and just commiserate,” she says. Fortunately, she saw an article about Mended Hearts in her hospital’s news- letter. She attended a meeting where the group answered her questions and provided a sense of belonging. She joined Chapter 425 - Portland about seven years ago and is now its treasurer. In addition to the support, Karlin says MHI has taught her to better advocate for herself as a patient. She now encour- ages others to do the same, whether it’s discussing medication side effects, struggles with lifestyle changes or even getting a second opinion. Karlin had a septal myectomy, an open-heart procedure in which the surgeon removes part of the thickened, overgrown septum between the ven- tricles, to treat her HCM at age 65. However, instead of removing just one layer of tissue, her surgeons performed a new procedure that removes tissue all the way down to the walls of the heart. Her cardiologist was reassuring that the scar tissue wouldn’t rebuild, meaning she wouldn’t need future surgeries. Questions to Ask your Doctor If you have been diagnosed with cardiomyopathy, make sure you understand your condition and what next steps you should take. Get the conversation started with your doctor by asking these questions: • What type of cardiomy- opathy do I have, and how does it affect my health? • What caused my cardiomyopathy? Did I inherit it? • How can I keep my cardiomyopathy from worsening? • What changes can I make to improve my health and reduce risks? • Are there medications I can take, and how do they work? • Do I need surgery or other medical proce- dures? What is involved? • What are the risks and benefits of each treatment option? • Should other family members be tested for cardiomyopathy or a genetic mutation? • What are the chances of my children having cardiomyopathy? • Where can I find more information to help me make the best decisions? • What symptoms require a call to the doctor or 911?
