Patient Blogs | Cholesterol Management
What It Was Like to Find a Treatment That Works
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The year was 1976, and I was 21. My 50-year-old father had died 10 years earlier, after suffering a massive coronary. My only sibling had died in 1975, at 27, also of a heart attack. This was shocking enough for me to seek my first adult physical exam with a doctor in the small upstate New York village where I lived.

It came as no surprise when he explained my total cholesterol was well over 400, when below 200 was considered within normal limits. My LDL-C (“bad cholesterol”) was high, and my HDL (“good cholesterol”) was high as well -- the single piece of good news.

“Considering your family history, we’ll start you on medication right away,” he advised.

But medications available in 1976 were a far cry from those at our disposal today.

Off I went to the pharmacy, then home with a canister of cholestyramine, an orange powder that morphed into a revolting concoction of orange glop when mixed with water. Dutifully, I drank it down each day -- well, most days -- and dreaded doing this for the rest of my life.

When I had follow-up bloodwork, I was discouraged when I saw how little the numbers had shifted. My total cholesterol and LDL-C had dropped, yet not nearly enough. There was little left to do but restrict my diet, exercise, and continue on this less-than-appealing, less-than-effective course of treatment.

I explored alternatives: Megadoses of niacin, which caused uncomfortable flushing both internally and externally, redness working its way from trunk down each limb. Eating lots of oatmeal. Not eating other things known to contain cholesterol and fat.

The needle barely moved.

In the late 1980s, statins were released. I was excited to take them, and take them I did: one by one, as each new version was approved. Now my totals were in the high 200s, closer to what someone with “garden variety” high cholesterol would consider high, though never approaching normal. Even at maximum dose, numbers were still “better, but not where we want them.”

My lipid specialist managed treatment of my “type 2a familial hyperlipidemia.” Unable to achieve satisfactory LDL-C levels, ratios (total cholesterol:HDL, LDL:HDL) became the benchmark for improvement. It was the best we could do.

Decades passed. Periodically, I underwent testing -- stress tests, stress echocardiograms, nuclear stress tests -- always revealing no observable blockages or restrictions. Yet I felt like a ticking bomb, biding my time until elevated cholesterol levels and my family history caught up with me, and I’d suffer a similar fate to my father and brother.

In the mid-2010s, a yearlong trial of living a strict vegan lifestyle yielded negligible results. Then I heard about a new class of medication known as PCSK9 inhibitors, recently approved for treatment of those with familial hypercholesterolemia (FH), a more specific name for my condition. By 2017, I’d found a cardiologist who was familiar with this genetic disorder and these medications (not all physicians or even all cardiologists were, or are today) and asked that he prescribe one.

This changed everything.

When the first results came in and both my total cholesterol and LDL-C were lower than they’d ever been, I was overjoyed. Since being trained as an advocate for awareness for The FH Foundation in January 2018, I’d learned it was possible that achieving LDL-C levels this low --below 70, even below 50 -- could halt any further arterial plaque development.

In a single moment, my fear of requiring stent placement, bypass surgery, or worse yet, experiencing a fatal heart attack or stroke, faded away. I’d finally found a treatment that worked.

Before this, I had determination. I did everything I could. Still, I feared it might not be enough to counteract the genetic cards I’d been dealt.

But now, for the first time in the 42 years I had lived under the threat of early death -- since my diagnosis at 21 -- there was something new.

I had hope.

If your untreated LDL cholesterol is over 190, you have a family history of early heart events, and changes in lifestyle have had little impact on your levels, you may want to speak to your doctor about FH.

 

 

Photo Credit: Hiraman / E+ via Getty Images

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Casey Mulligan Walsh

Casey Mulligan Walsh

Diagnosed since 1976

Casey Mulligan Walsh was diagnosed with familial hypercholesterolemia (FH) at 21 and has spent more than 4 decades learning about and managing this genetic disorder and encouraging affected family members to do the same. An advocate for awareness for The FH Foundation, she is devoted to promoting appropriate diagnosis and treatment of this common yet tremendously underdiagnosed disorder in her region and beyond. A retired speech-language pathologist, she writes about FH, grief and joy, and navigating life’s uncertainties and is currently querying a memoir. Find Casey at www.caseymulliganwalsh.com or connect with her on Facebook, Instagram, Twitter, or LinkedIn.

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