So Much Life Left to Live

By John Durham

I’m John Durham, and I have homozygous familial hypercholesterolemia (HoFH), although for most of my life it was simply known as "high cholesterol." I'm 69. 

When I was 16, my father, an orthopedic surgeon, knew something was wrong because of the huge xanthomatous lesions (which contain cholesterol and fats) on my Achilles tendons. Also, my maternal grandparents both died of complications from atherosclerosis. My total cholesterol was dangerously high at almost 600 mg/dl, and diet modifications never got it below 350.

My next older brother and I had gone in for stress tests because we felt tired and were getting sick too often, even though we were both competitive athletes. In both cases, the physician shut down the test before the end and called 911. 

My brother needed a quadruple bypass, and I “just” required a triple bypass. Thirty years later, I've had two stents and now have stable angina in some inoperable vessels.

Since I was 16, I've been on virtually every medication thought to control cholesterol known to medical science, some with negative side effects. For instance, taking two grams of niacin twice made me turn red from head to toe. It felt like someone was passing a blowtorch over my body. 

Forty years of various statins have been tolerable and the cholesterol-lowering PCSK9s were fantastic while private insurance lasted. 

I’ve gone through periods of depression because of the lack of progress in recognizing and treating this disorder. It was so hard when I couldn't see the results of the medication until my quarterly blood work was done. 

The worst part of this disease is that most of the damage — small cardiac vessels that can’t be surgically treated — occurred before it could be properly identified and somewhat controlled. As a result, I have stable angina, which requires additional medication. 

Things can be so different for people who are diagnosed at a young age today.

But I wake up every day looking forward to what lies ahead. I pursue my passion for photography; I have friends and family who love me and I engage with a greater community in online groups. The struggle remains, but so do hope and optimism. There are times I may be down, but I will never be out. There’s too much life left to live.

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For more information on this health topic, visit heart.org.

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