Tom's Story - Living with HoFH

Tom’s Story

“We’ll See You in Ten Years” – I Didn’t Like That Answer

Tom's Story - Living with HoFHTom’s story starts out like many Family Heart Foundation Advocates. “My family has always had high cholesterol,” he explains, “but we never put a name to it.”

Once he secured a job with good health insurance, Tom and his wife decided it was time for him to get a general checkup. Twenty-eight-year-old Tom hadn’t seen a doctor since college. When his cholesterol came back it was so high that his new doctor assumed it must have been an error.

The doctor ran the numbers again and sure enough, Tom’s cholesterol was very high. “I was put on basic medications, and about a year later, I had a heart attack,” he says. At that point, Tom was flown down to Hershey Medical Center in Pennsylvania where one of his providers was working on mapping the human genome. She diagnosed Tom with homozygous familial hypercholesterolemia (HoFH).

Tom's Story - Living with HoFHHoFH is the most serious and more rare form of familial hypercholesterolemia (FH). It’s estimated that HoFH affects as many as 1 in 300,000 people around the world. When left untreated, people with this disorder often causes heart disease in the early teen years – sometimes even earlier.

Because of this, Tom understood the importance of having his children tested. “We have five kids,” explains Tom, “We had our first tested in second grade because at that point they’re old enough to understand and swallow a pill if they need to.” They’ve followed this pattern with their other children. Out of the four old enough for testing, only one has had high cholesterol. She’s responding very well with just medication.


“We had a name to put to it.”

“I had never heard of FH,” explains Tom, “that was the first time we had a name to put to it. It was weird and awkward because I felt alone.” So he turned to Google where he discovered the Family Heart Foundation. That’s when Tom started learning more about lipoprotein apheresis treatment.

Lipoprotein apheresis is a treatment that removes low-density lipoprotein (LDL) cholesterol and lipoprotein(a), or Lp(a), from the blood without surgery. It separates the plasma portion of the blood, runs it through a machine, and the LDL is removed.


“We’ll see you in ten years.”

Tom's Story - Living with HoFH“When I had my first heart attack,” he says, “they had talked about apheresis, but I was told that was only for someone on their deathbed – a last resort – and I was not there.” After the second heart attack, they gave Tom the same set of pills and a farewell of “we’ll see you in ten years.”

“I didn’t like that answer,” he says. Tom browsed the foundation website and learned a different story than what he had been told. He found that apheresis can be prescribed for patients with FH, HoFH, and high Lipoprotein(a). “I talked to people, begged and pleaded, and argued that my current treatment wasn’t acceptable.”

The decision to pursue apheresis treatment was a tough one for Tom. “I really hate needles,” he says, “and I have to be on a machine for four or five hours.” His doctor advised him to go to Redding, Pennsylvania – three-hour drive from his home – to check out their apheresis machine.

This isn’t uncommon. Since there are only 60 apheresis centers in the U.S., many patients must travel long distances for treatment.


“What’s the other option, right?”

Tom's Story - Living with HoFHFor Tom, apheresis is an all-day process. He works night shifts, so he typically finishes work on Friday at 6:00 a.m., starts his three-hour drive to Redding, does treatment for four or five hours, and then drives three hours home to his wife and five children.

“What’s the other option, right?” he says. “If I don’t do this, I’ll have another heart attack. I accept the fact that if you don’t take your medicine, you’re going to have a heart attack. To me, this is just a really long pill.”


“I’ve been lucky.”

Despite it all, Tom says the entire apheresis experience has been wonderful. “I’ve been lucky,” says Tom, “I have good people who know what they’re doing, and that makes the process better.”

Those good people have become like family to Tom. “I know what their kids do, what their grandkids do, and they know what my kids are up to. I look forward to seeing them.”

Tom W. is a Family Heart Foundation Advocate for Awareness. If you're interested in joining the Family Heart Foundation as an Advocate click here to learn more.

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