My family means everything to me. For a long time, I couldn’t keep up with them and was afraid to make future plans. Even planning a vacation seemed impossible. We would go places and I knew I couldn’t keep up so sometimes I would have to stay in the hotel and rest while they had fun, or I would have to ask them to stop and sit down many times during the day. I didn’t know what was wrong with me, but I was convinced I was going to die before I reached 50. I felt so guilty that I couldn’t be 100% present with my family.
I was misdiagnosed by a doctor who told me to get my affairs in order because I could die at any time and there was nothing he could do about it! I felt so frail and weak that I cried. Other doctors had treated me for asthma but the inhaler made my heart race and I felt sick using it.
My wife convinced me to go to an event and the guest speaker talked about heart symptoms like mine. When I spoke to her later she said I might have HCM and directed me to call the HCMA for the name of a recognized Center of Excellence where I was finally given the right diagnosis. That chance meeting changed my life - I might not be here today if I had not been diagnosed with HCM and given open-heart surgery to correct my problems. Within days of my surgery, I felt like I could breathe, and now I am able to do things I could never do before. Looking back, I probably had heart symptoms in my 20s that I didn’t recognize. I felt so validated by being diagnosed - I wasn’t going to die and leave my family, I wasn’t crazy all those years I was misdiagnosed, and I could live a fairly normal life.
My heart used to control my life, telling me where I could go and when, and telling me when to stop. Now that I understand what I have and have had proper treatment, my heart no longer controls me. I thought I would not live long enough to see my daughters get married, but I was able to walk the first down the aisle and even enjoy some dancing at the reception!