Dawn’s Story

Like so many people with familial hypercholesterolemia (FH), Dawn Tvrdy always knew high cholesterol ran in her family, but she didn’t have a name for it. Much of her father’s family had suffered fatal heart attacks before they turned 50. “I always tried all the new medications and they never worked,” she explains. “No one knew what was wrong other than I had hereditary high cholesterol that didn’t respond to medicine.”

Dawn experienced side effects from statins serious enough to make her stop taking them, and other cholesterol lowering medications made no difference to her levels.

“We really need to schedule this as soon as possible”

When she was in her 50s, Dawn underwent a stress test at her doctor’s office. A nurse called with the news that she didn’t pass and needed to come in for an angiogram. “I said, ‘I’m going to Germany in two weeks, and I’ll do it when I get back three weeks after that.’ The nurse said, ‘No, we really need to schedule this as soon as possible, like tomorrow.’ I laughed and said, ‘I’ve never been to Europe, and I’m going to Germany!’”

It took some convincing, but Dawn eventually scheduled her angiogram, assuming it was just something she needed to do get clearance for her European vacation. “They went in and came back and said I was having a quadruple bypass the next day,” she says. And that’s exactly what happened in May of 2013.

“It was a weight off my shoulders”

Once recovered from her surgery, Dawn was referred to Dr. Patrick Moriarty from University of Kansas Medical Center. Her appointment with Dr. Moriarty was when she was finally diagnosed. This was the first time she heard the name for her condition: familial hypercholesterolemia (FH). It was also the first time she had her lipoprotein(a), or Lp(a), tested and found out it was high. It turned out she has both genetic disorders.

Initially this news was a bit of a relief. “It was very freeing to know that this wasn’t because I had a McDonald’s hamburger and fries,” she explains. “I had been dieting and exercising all my life and it’s always been a struggle to lose weight and stay on a diet. So to know that genetically my makeup was such that I could eat cardboard and still have high cholesterol was a weight off my shoulders.”

“It’s become a part of my routine”

After consulting with Dr. Moriarty, Dawn agreed that lipoprotein apheresis treatments were her best option. This is the only FDA-approved treatment for high Lp(a), but currently only for people who also have FH and have had a cardiac event or procedure, like Dawn. She had her first lipoprotein apheresis treatment right before Thanksgiving of 2013.

The results are hard to argue with. At the start of her first treatment, her low-density lipoprotein (LDL) was 297 and her Lp(a) was 106. After the three-hour treatment her LDL dropped to 71 and her Lp(a) dropped to 29. Both LDL and Lp(a) go back up after treatment, so Lipoprotein Apheresis has to be done on a regular basis.

Dawn does these treatments every three weeks. “It’s become a part of my routine,” she explains. And she’s hoping lipoprotein apheresis will be more accessible to more people in the future.

“I’m excited for the future of the Family Heart Foundation”

This is part of why she was so thrilled to see the Family Heart Foundation expand to include those living with high Lp(a). “That was huge to me,” she says. “It makes me excited about where the Foundation is going because now they are helping more people ask the right questions. And that helps you get the right medication and treatment. They’re there for each and every patient.”

If you’re interested in learning more about lipoprotein apheresis treatments, you can visit the Family Heart Foundation Care Navigation Center.