Steve Ryan is the first American patient treated by the Prof. Haïssaguerre and his team, who benefited from an A-Fib catheter ablation, back in 1998, just when this approach became the treatment of reference.
This 79 years young, full of life character, tell us about his story, his vision of A-fib and his initiatives to help other patients.

 

1. Can you tell us briefly about your story?

The year was 1997. The location Venice, CA. I had just come home from a long day at work on the NBC Soap Opera “Days Of Our Lives.” My wife, Patti, was out of town. I was home for only about 5 minutes when my heart started going crazy. It felt like my heart was trying to jump out of my chest. “Is this a heart attack? Am I dying?” It was terrifying!
In a state of shock, I got in my car and raced to the nearest hospital. But by then, the A-Fib attack had stopped. However, I continued to have short A-Fib attacks all the time. I couldn’t understand why my heart was so out of control. I was 57 years old and in great shape. I was the perfect example of “Lone” A-Fib without any illnesses that might make me more prone to arrhythmia.

I went to a local cardiologist who diagnosed me with Atrial Fibrillation, which I had never heard of before. He had me try every medication he knew of at that time. They either didn’t work or caused nasty side effects, including the dreaded amiodarone.

A-Fib put my life in the toilet! I love running, especially sprints like the 100 and 200 meters. I was on the NBC Track Club. But with A-Fib, every time I’d try to run even for just a short jog, my pulse would go really high. I’d have to stop and walk back. And at work I’d get dizzy just when we had to move all the cameras and sound equipment. I couldn’t function. I had to go on disability leave from work. And if I was out on disability leave for more than a year, I would be fired.

 

2. Before being diagnosed, had you ever heard about heart rhythm diseases?

I had never heard of Atrial Fibrillation before this and had no idea what it was. I didn’t know anyone else with A-Fib.

Now I know that A-Fib is a world-wide epidemic, but back then A-Fib didn’t even have a common name. It was definitely under the radar at this time. Who knew?

 

3. How did you find out about Liryc?

I was desperate! I had to get cured or I would lose one of the best jobs I had ever had. Working on the soap Opera “Days Of Our Lives” was a blast. I was working with incredibly creative and friendly people. Every day was something new.
I was really motivated to be cured of this awful heart disease. I searched out every well-known heart doctor in the U.S. or I talked with them on the phone.

One of the first doctors I talked with told me about Pr. Haïssaguerre’s work. But I kind of blew him off. How could some French doctor be that good compared to doctors in the U.S.? Boy was I wrong and shortsighted!

I had no luck in the U.S. I actually had 2 right atrium ablations in the U.S. But they were ineffective. We now know that a right atrium ablation won’t fix A-Fib which usually comes from the left atrium. But doctors in the U.S. didn’t know that at this time.
Out of desperation, I locked myself in a medical library with a medical dictionary and read everything I could find on A-Fib and arrhythmia. Imagine my surprise when I read that Prof. Haïssaguerre and Prof. Jais had discovered how to cure A-Fib!

Even though it felt like going to Mars, I decided I had to go over to Bordeaux, France so they could take care of my A-Fib and restore me to sinus.  I wrote to Pr. Haïssaguerre who graciously welcomed me to travel to Bordeaux and be treated by him and his colleagues. At that time LIRYC was just an idea. I found out later that I was their first U.S. patient.

It was quite an adventure traveling to Bordeaux. I, my wife, Patti, and our niece, Julie, arrived in Bordeaux April 16, 1998. You would have enjoyed looking at their hotel room. Patti and Julie taped the names in French on absolutely everything in the room. They made valiant efforts to communicate in French with everyone. The people in Bordeaux were very patient and helpful, though at that time few spoke English. I was a bit more fluent in French.

I met with Profs. Haïssaguerre, Jais, and Dipen Shah who spent long hours performing 2 catheter ablations and finally restoring me to sinus!

 

4. Can you tell us more about your website?

It was incredibly difficult for me to read and make sense of the many medical journal articles on A-Fib and arrhythmia. I wound up making extensive notes and organized them by topics. When I was cured, I didn’t want all that research to go to waste. I wanted to make life easier for others with A-Fib, so that they wouldn’t have to go through what I did to get the info they needed. Instead of “medicalize,” I wanted to write what I had learned in a way that ordinary people could understand and relate to. That’s how A-Fib.com was born in 2002 after I retired from NBC.

The genius of A-Fib.com is that it takes difficult medical concepts and research and translates them into terms an ordinary person can relate to. For example, this year’s AF Symposium featured the new ablation technology Pulsed Field Ablation (PSA). I explain how PFA works, but more importantly, why it’s important to patients, how it will affect their treatment.
Another important feature of A-Fib.com is its down-home, personalized writing style. I avoid “academicalize”.  Instead I let my personal feelings come through, at least a bit. I write in a style that people can relate to and feel comfortable with. For example, on PFA I write “…This may be challenging to read. But it’s worth it.”

 

5. Do you think it is important that people are more aware of these disease?

People need to be more aware of A-Fib, particularly someone who just finds out they have it. All they hear on the media is “take your anticoagulant and live with it.” That’s obviously so wrong. But the average person newly diagnosed with A-Fib has a hard time finding trusted sources of information on the internet.

LIRYC could be a beacon of light and truth for the A-Fib patient, if it ought to have more focus on patient education.

 

6. What short message would you like to share with patients suffering from heart rhythm diseases?

The main message of A-Fib.com and our book “Beat Your A-Fib: The Essential Guide to Finding Your Cure” is that you don’t have to live with A-Fib, contrary to what you hear on the media.
In fact, living with A-Fib is often a death trap. There are few other diseases where people are told to just live with it, that A-Fib is just a nuisance, just take you meds, A-Fib isn’t that serious, etc. 

There is seldom a good reason to leave someone in A-Fib. Educate yourself. Learn your treatment options. Don’t settle for a lifetime on meds. Always aim for a cure.

I’m 79 years young. Life without A-Fib is terrific!