Lori H's Story

Lori shares her experience as an adoptee with HCM.

I was adopted at five days old. I found out the information on my birth parents when I was approximately 23. As it turns out, my birth father died of sudden cardiac death after water skiing at the age of 37. Because of the strong family history, I have been seen by a cardiologist since I was about 32. I would have periodic stress tests and echocardiograms. They always came up clear. 

Then, in September of 2007, I started feeling many palpitations and felt light-headed during exercise. I went to see the cardiologist for my check-up and initially, we both were leaning towards me having anxiety attacks. I likened the feeling to what it feels like when you narrowly escape a traffic accident or when you see one happen. He had me do another stress test, echocardiogram and then he had me wear a 24-hour Holter. A week later, I went in to discuss the results. He told me that I shoot off over 13,000 PVC’s per day. In and of itself, that can be a benign thing; however, he also did not like what he saw on the echo. He had me come into the hospital the following day for a TEE (transesophageal echocardiogram). It was during that test that I was diagnosed with moderate hypertrophic obstructive cardiomyopathy. I was 40. My world shattered into a million unrecognizable pieces. All thoughts went to my children who were 12, 6, and 4 at the time. 

Upon the advice of my cardiologist, since he only sees two cases a year and the folks at the HCMA, I decided to see Dr. Harry Lever at the Cleveland Clinic. Right now, I am one of the lucky ones. I am being treated solely with medication and lifestyle change and am feeling about as good as can be expected on most days. In fact, I would say that all the weight gain from the beta-blockers is my worst complaint. 

I realize that I may have to have an ICD implanted someday, or even major open-heart surgery, but I will look at that as a life preserver and attempt not to dwell. My kids are all presently clear of HCM but anyone who has read for 10 minutes on the subject knows that it could be lurking just beneath the surface. They are all very heavily involved in sports and a diagnosis would be devastating to them … and to my husband and me. They define themselves by their sports and to a large degree, we define ourselves by them! The guilt was crippling in the beginning. I have not had genetic testing done. 

 After months of letting things settle in and doing some research, I consider myself lucky. Not lucky to have the condition – I am not a dope - but lucky to have lived long enough to have gotten the diagnosis. If only my birth father had been so lucky.