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Serving the HCM Spectrum Disorder Community Since 1996

Share your Story: Kathy Wilson

“(Hypertrophic Cardiomyopathy) controls me, and it doesn’t control me anymore”- Kathy Wilson.  In 2012, Kathy was diagnosed with Hypertrophic Cardiomyopathy (HCM) by a cardiologist in Indianapolis who despite her being asymptomatic put her on medication. Her diagnosis caused Kathy to develop strong anxiety and go into depression. Later on, another cardiologist in Indianapolis ordered a new cardiac MRI scan and assessed her risk to be high enough to warrant a defibrillator. Her insurance disagreed with the risk assessment and refused to cover the cost. The diagnosis of needing a defibrillator caused Kathy’s anxiety to take an even more present role in her life. Along with her anxiety, her symptoms also increased and Kathy began to feel like her life was taken over. 
            After her defibrillator insertion, Kathy stumbled upon the Hypertrophic Cardiomyopathy Association (HCMA) on Facebook. This is where she was first introduced to the idea of going to an HCMA recognized Center of Excellence (COE). After getting in contact with the HCMA, Kathy went to the Cleveland Clinic COE.  Kathy felt that “I learned more in 12 hours (at the COE) than I have since 2002”.  At the Cleveland COE Kathy was diagnosed with obstruction, and as a candidate for a myectomy.  Her doctor in Cleveland scheduled her myectomy as soon as possible in order to reduce her anxiety. Contact with the HCMA also greatly helped her reduce her anxiety and understand what was happening to her.
  Due to her anxiety and depression post diagnosis, Kathy gained 70 pounds which is not ideal with a heart condition.  However, since her anxiety has decreased, she has entered an intensive weight loss program and was able to lose over 20 pounds so far. The weight loss has alleviated some of the strain on her heart and has decreased her blood pressure. Because of the weight loss and decrease of blood pressure her doctor was able to take her off of her nightly medication. Since finding the HCMA and COE Kathy feels like her quality of life has greatly increased. The HCMA looks forward to launching a database to monitor anxiety in patients with HCM like Kathy.