I should be dead. I always knew my cholesterol was high. At 25 years old, my first blood test showed a total cholesterol of 410, but no one made a big deal of it. I lived a healthy, active lifestyle. I had never been overweight, and I had been a vegetarian most of my life. What was there to worry about?
Nearly 30 years later I was watching Barbra Streisand on The Katie Couric Show.She was discussing heart health. The number of deaths from heart disease was overwhelming, and the amount of people walking around undiagnosed was astonishing to me. I decided it was time to get my heart checked out. I made an appointment for a treadmill test.
After the test I drove home. As I walked in my home, the phone was ringing. It was my cardiologist insisting I come back. The blockages were bad, and I needed surgery right away.
Two days later I was having triple bypass surgery. I was lucky to find out I had no heart damage, and they caught it in time. It was at this time I first heard the words familial hypercholesterolemia. My surgeon told me that without the bypass my first symptom of FH would have been sudden death likely within the year. Thank you, Barbra Streisand!
With this new knowledge, I was determined to fight this cholesterol problem head on. I started on a statin, cardiac rehabilitation and walked two miles at least three times a week. At a three month follow up my cardiologist noted no change in my cholesterol and sent me home. He told me, “It is now between you and the Lord.” I felt completely helpless.
After a year I decided to give it another go. Another treadmill test meant another cardiologist, and this one finally explained what FH really is. He told me I should look up a Dr. P. K. Shah in California. That was a long way away from my home in Hawaii, but I decided I needed to become my own health advocate. I had to get to Dr. Shah. I made an appointment to see him, and to my surprise I wound up at the Cedar Sinai Medical Center Barbra Streisand Women’s Heart Center!
Many people say, “it’s in my family.” I did. My father had a heart attack at 51, and his father before him. The day I joined the Family Heart Foundation as a Patient Advocate, I found a group of people who shared similar stories. I finally felt like I’m not alone in this. Now I have a specialist who works with me, and a community who supports me, and with that I’m confident I can fight this invisible disease.
MORE FH STORIES