Joseph Caruso


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!

Please share this story to bring awareness to Heart Month!

To learn more about hypertrophic cardiomyopathy (HCM), go to
#4HCMAwareness #HCMStrong #HCMDay #4HCMWarriors #4HCM

Joseph Caruso