Familial Hypercholesterolemia: A Stanford Patient Story

Author: Stanford Health Care

It started a long time ago. I was 15 when my father passed away at age 39 from a heart attack due to cholesterol. And once that happened, the family doctor said, "Everyone now needs to be tested for cholesterol.

This is very severe." And it was determined that three of us in the family had very high cholesterol. So, at that time, I did go on medicine. And then, after a while, I didn't want to do this because I was fighting it. I really just like, "Well, I don't see it.

I don't feel it. I'm okay. So, prior to turning 39, I discovered a bump on my elbow, and I went to the dermatologist, and it was, "We've got to take this out." So, they took it out. Did the lab test, came back, met with the doctor, and he said, "This is calcified cholesterol, and if it's here, it's everywhere. This is very serious." I'm going to refer you to Stanford." And of course my heart was pounding.

FH is also called familial hypercholesterolemia and it is a condition that results from the body's inability to clear high cholesterol from the blood. This results in startlingly high cholesterol levels. In an adult an LDL greater than 190 makes us suspicious that that person may have familial hypercholesterolemia. In Brenda's case, her LDL, I believe, was in the 300 or 400's, so it was quite excessive. The key about FH is that you have high cholesterol from the time you're born.

Familial Hypercholesterolemia: A Stanford Patient Story

So, over the course of a life your blood vessels are exposed to very high levels of cholesterol. And his very high cholesterol level is like a poison to the blood vessels that results in, huge accumulation of fatty deposits and cholesterol deposits in the arteries that feed the heart and it leads to a much, much greater risk of heart attack or stroke. I remember distinctly the first time coming over to Stanford.

Mary Ann Champagne was the first person I met. She just said I"I'm so pleased to meet you, and I'm so glad that you're here." And, I told her, "I am afraid. So, how can we work together so that I'll keep coming back?" Because, I think, the cholesterol numbers were so high that when the doctors would see that, they'd be like, "Oh my goodness, we better give you this, and we better give you this, and we have to give you this," and then I would feel so awful from it, I just -- it didn't make me feel good. So, she said, "We're going to start over. We're going to take it slow. We're going to have you take a medicine. We're going to adjust and have you get used to it.

And if we need to, we're going to add another one. People with FH, although lifestyle is important, medications are essential, and so they need to stay engaged. And we try very hard to keep people engaged by making them partners, in their whole treatment plan. I take three different kinds of medicine every night before I go to bed, and they work in different areas based on what my numbers are when I have my blood draw. So, the results come, they look at it, they determine what needs to be added or changed. A lot of it is related towards your diet and/or lack of exercise.

So, I started walking. And, last summer, I was going five miles a day. I have recently lost quite a bit of weight. I feel good. My numbers are great. For me, this is lifelong. And, it took a while for me to accept that, but my life is very valuable, and I want to live for a long time.

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Familial Hypercholesterolemia: A Stanford Patient Story

It started a long time ago. I was 15 when my father passed away at age 39 from a heart attack due to cholesterol. And once that happened, the family doctor said, "Everyone now needs…

By: Stanford Health Care