Scott

I always knew about my family history of heart disease, my maternal grandfather had a heart attack at age 50 in 1965 and died of a heart attack at 65.  My mom had an angioplasty in 1993 at age 51, then at age 60 she had a double bypass. At age 27, my high cholesterol was discovered by having a routine physical.

I was told to eat right, exercise, don’t smoke and received a prescription for a statin.  I received the same protocol as would a person with lifestyle induced high cholesterol.  Wanting to avoid the cardiac issues my grandfather and mother experienced, I took the doctor’s recommendations to heart by doing everything he suggested.  In fact my, Cholesterol numbers were then always below 200, sometimes as low as 140.  I ate primarily low fat foods, didn’t smoke and exercised a lot.  From all that I was doing, I thought I had reduced my risk of heart disease to the same level as the general population without high cholesterol…I was very wrong.

At the age of 43, I was in great physical shapewas very conscious of my diet, and I understood the importance of going to the doctor to manage my high cholesterol, by getting regular screenings.

In April of 2011, while lifting weights I noticed that I was becoming breathless between sets. The answer in my mind was to start increasing my cardio conditioning. Five minutes into a workout on the Stairmaster, I felt a burn feeling in the center of my chest.  From my years of working out, I recognized the muscle “burn” feeling similar to when I would completely fatigue a muscle from weight training.

I immediately went home and called my doctor and early the next morning, I was at the hospital doing a stress test.   A few minutes into the test the technicians stopped the test and the cardiologist on duty came in to review the results.  She said to me, “after you finish collecting your things, I want you to immediately meet me in my office.” At that point, I knew something was wrong.  She explained to me that a portion of my heart was not pumping well and she scheduled for an angiogram.

I woke from the angiogram with the cardiologist telling me; “I’m so sorry but you need to have an immediate quadruple bypass surgery and we are doing it at 8:00 a.m. the following morning.

The night before my open heart surgery, I had to stay in ICU because of the shunt they left in my leg from the angiogram earlier that day.  At about 9:00 p.m. the woman next to me in ICU who had bypass surgery that day, ended up coding.  I saw the ICU staff spring into action then I could hear them trying to revive her with a defibrillator.  After 3 or 4 jolts I heard a voice say “she’s gone.”  Thirty minutes later, her family came in to grieve her death.  It was unbelievable and scary watching the whole death sequence play out in front of my eyes as I was scheduled to have the same surgery in less than 12 hours.

I had over 90 percent blockage of the left main artery; “The surgeon told me that if I hadn’t come in and gotten tested, I would have had a heart attack within two or three weeks,” he said. Based on where the blockage was located it would have shut off the blood flow to over half of my heart, meaning that the resulting heart attack would have been fatal. “You hear about those seemingly healthy guys who just drop dead while they’re out jogging or at the gym,” that would have been me.

I survived the 6 hour procedure and being in good shape, my body recovered very quickly…missing 2.5 weeks of work and back in the gym in 6 weeks.  Above all, I was most grateful for the priceless gift of being able to take part in my kids’ lives as they grow up.

As a result of my bypass surgery, I had my children’s cholesterol checked and discovered all three had very high cholesterol levels (approximately 300, 400 and 800).On the one year anniversary of surviving my bypass surgery (April 12, 2012), is the day I was at UCSF and I heard the term Heterozygous Familial Hypercholesterolemia for the first time.  Unfortunately, I also learned the term Homozygous FH and was devastated when I was told by the Lipid Specialist just how serious it is.

Twenty-four months after my bypass surgery (April 2013), though regular post-bypass monitoring it was discovered that I had a +90% blocked left carotid artery that needed surgery to correct.  While not nearly invasive as open heart surgery, this procedure is just as scary due to the risk of having a stroke during and following the procedure.

During the carotid post-surgery follow-up, I had a cardio stress test and a problem of decreased pumping capability was detected in my heart.  An angiogram was schedule the following day June 5, 2013).  Waking from the angiogram, I was told “your heart is not getting enough blood, two of your four bypass grafts have failed, there is more blockage in your coronary arteries and we need to redo your bypass.”

Stunned and scared at the prospect of having a repeat open heart surgery just 26 months after my first heart surgery, I was able to have a second opinion with a major teaching hospital, and the consensus opinion is for me to wait until I have symptoms before having my bypass redone.

Even with the hardships associated with this disease, I have a tremendous amount of hope for the future.  As the word gets out about FH, I am excited that more people will get tested and if they find they do have high cholesterol levels, there are currently a number of good treatment options available to them and even more promising treatments on the horizon.

Finally, it wasn’t till I saw a lipid specialist about my kids, did I actually learn about the disease I have.  Now that I know what I am fighting against, I am learning everything I can about FH in order to guide my kids through this disease with early detection and appropriate treatment.  My wish for them is a future without the intense surgeries that I have had, in order to save my life.

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