Patient Stories

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Tom Weiser is CardioSmart

Tom has had two heart attacks triggered by familial hypercholesterolemia (FH). He has become a vocal and educated advocate for his disease and a positive example for his four children.

Tom has changed his lifestyle after having children and a second heart attack. He eats a strict low fat diet and exercises more than ever before.

After having children, a second heart attack and a subsequent surgery, Tom knew if he wanted to watch his children grow up he had to improve his lifestyle.

What inspires me is the promise of continued improvement in drugs and medical procedures.

Tom Weiser: Heart Attack Patient

What is your CardioSmart story?

My name is Tom Weiser and I have Familial Hypercholesterolemia, also known as FH.  Normally, this is where I would tell you my blood pressure and cholesterol numbers and how many heart events I have had, but I am not going do that, at least not yet, because those numbers do not define who I am.

Before my first cardiac event, I would proudly tell people that it had been over 10 years since my last doctor visit. I was the picture of good health—at least that’s what I thought.

One day, I decided to have my cholesterol checked because I knew my mother had high cholesterol and my dad's mom died suddenly of a heart attack. Heart disease affects both sides of my family.  When I got the results I was disappointed, but not surprised. Plus, during a free cholesterol screening, I remember a doctor telling my mom that she should “be dead because your blood is as thick as Jell-O.” When someone says your mom should be dead, it sticks with you as a child.

About a year after my checkup, I started to have chest pain at work. I remember not being able to climb stairs without getting dizzy and I was unable to catch my breath. I was later told that I had a heart attack. After a trip to the ER and numerous tests by doctors, I found myself in a Cath lab. An hour later, I was being air-lifted to a regional hospital to have an emergency stent placed in my "widow maker" artery that was 98% blocked. It turns out that I had coronary artery disease, which combined with FH, created a deadly combination.

My doctor compared the inside of my arteries to a cobblestone road and the little bumps were grabbing the extra cholesterol in my blood causing the massive blockage. After my stent was placed, I was discharged and prescribed a variety of medications. I was told that I would be back in three years to have it done again.

I am proud to say I made it seven years before experiencing chest pain. By that time, I changed positions at work and found myself as an underground rock miner with the same company. During one shift I noticed I was having a hard time walking short distances and was experiencing chest pain and dizziness. Before I knew what happened, we were meeting with a surgeon and scheduling a date for triple bypass surgery.

After my surgery, I was put on the same regimen of drugs with no other changes. Knowing that it didn't work, I started to be more aggressive in my treatment. I did the research, I asked the right questions and when I didn't hear the right answers, I asked again. I became my most educated and vocal advocate.

The newest part of my journey is difficult because it involves my kids. What parent wouldn't trade places with their kid to keep them from pain or suffering? That is the one truly evil thing about FH. Odds are someone in your family will have it. I think Katherine Wilemon, President of the FH Foundation, said it best, "You don’t find individuals with FH, you find families with FH."

We have had two of the four kids tested and one of the two has FH. When we told her, she cried in my arms and asked me why she had to have Daddy's blood. I said, “Because my good looks just weren't good enough for you, honey.” She is a strong independent 8 year-old little girl and she will be fine.

My wife and I have purposely not hidden this disease from our kids. They see me taking my pills, they see me eating good food, they came to the hospital after my surgery, they’ve been to rehab, and occasionally come to an apheresis treatment.  Because we got them checked at a young age and because we are starting treatment early, they will have a fighting chance at a "normal life."

People ask me all the time about my positive attitude against all of this adversity. I simply say, “I have to be positive, what other options do I have?” I was once told a story about depression. Think of yourself sitting on the front porch in a rain storm; that rain is depression. Ask yourself, are you the kind of person who sits on the porch and refuses to do anything because it’s raining? Or do you put on a rain coat and continue on with life despite the rain? I look at the rain as being FH and 12 years ago, I put that rain coat on and marched into the storm.

How do you work with your doctors and care team to stay on top of your heart condition?

I am in constant contact with my primary care doctor, my cardiologist, and my LDL apheresis lab staff. My doctors and I communicate openly about my goals and what options are available to meet those goals. The professionals I work with make me feel like their #1 patient.

What lifestyle changes did you make to improve your heart health?

Prior to my heart attack, I lived a healthy lifestyle, ate good food and exercised. But there was always room for improvement. After having children, a second heart attack and a subsequent surgery, I knew if I wanted to watch my children grow up I had to improve my healthy lifestyle. Now, eat a strict low fat diet and exercise by walking more than I ever had before. Last year my oldest daughter and I completed a 5k.

What challenges do you face? How are you able to overcome them?

Less than three years ago my bad (LDL) cholesterol level was still high at 383 mg/dL. Today my LDL is 107 mg/dL. My cholesterol numbers are still bad for a "normal" person and because of this I’m afraid I will have another cardiac event. This fear affects my everyday life. In addition, medical bills are financially challenging and logistically it’s challenging when I have to drive three hours to my LDL apheresis treatments. With the love and support of my family and a positive attitude, I am able to overcome my challenges.

Who is your support system?

My family and friends

Do you have a personal motto? What inspires you?

What inspires me is the promise of continued improvement in drugs and medical procedures, as well as, knowing that my daughter will receive a fighting chance because of these advances and early diagnosis.

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