Living with Atrial Fibrillation: My Story

In this interview, we speak with Rosalie Linver Ungar, author of a new book called In a Heartbeat: The Ups and Downs of Life with Atrial Fib. In the book, she discusses the 35+ years she lived with atrial fibrillation (AF), starting when she was first diagnosed in the late 1970s. She was treated with various medications over the years, and found some relief with amiodarone, but it wasn’t until her catheter ablation in January 2007 when she became AF free. Rosalie, who lives in Columbus, Ohio, shares her story with EP Lab Digest.  

What made you decide to write this book? 

After years of receiving care for my atrial fibrillation, I was still in regular communication with my doctors, so I was invited to share my story as a patient at the Ohio State University (OSU) Wexner Medical Center, at a couple of their fundraising conferences. Afterward, I received a lot of interest in my story. As a published author, I was looking for something else to write about, and thought this topic was perfect. When people are first diagnosed with AF, many do not know what it is. I decided to write about my experience. 

Who was your intended audience for the book?

I wrote it with the patient perspective in mind. I have family members with AF, so I didn’t want them to be afraid to get treatment or try the different drugs available. With AF, it’s important to try to prevent stroke. 

What did your doctors think of you writing this book? Did you collaborate with them on this?

Yes, I worked with Dr. John Hummel and Dr. Charles Love. They recommend the book to their patients and we’ve done talks together. For example, I gave a speech with Dr. Hummel to the Healing Hearts of Central Ohio in February.

Tell us about when you were first diagnosed with AF.

I knew that most everyone in my family had experienced heart issues, so I was also a likely candidate. I had also struggled with thyroid problems all my life, and was in my endocrinologist’s office getting a checkup when he said, do you know that you have an irregular heartbeat? I said, I’ve been told that before, but I can’t find it — it’s never happening when I’m taking my pulse. He said, it’s happening now, and it’s called atrial fibrillation. He recommended that I see a cardiologist, and made an appointment with Dr. Patricia Caldwell from OSU. So that is how it all started. 

You struggled with AF for 35 plus years. How did your AF symptoms change over the years?

The more I went into AF, the more it happened, and the more it interfered with my life. Nothing seemed to work. Little by little, I tried all of the different medications, and none of them worked until I started on amiodarone. Because of my book, I’m now in touch with a lot of people with AF, and they tell me they also didn’t know much about AF when they were diagnosed, and how the symptoms can get worse. 

What do you think are the most common misperceptions about AF? 

I think a lot of patients don’t feel it when it’s happening, so they don’t believe the AF exists. I didn’t always feel the AF when it was happening. After I had my ablation, my electrophysiologist told me they couldn’t ablate one of the electrical pathways because it was too close to my esophagus. Six months after my ablation, a pacemaker check showed that I had been in AF more than 500 times. I was surprised — I had felt great. 

I also recently learned from some of the talks I’ve given that a lot of people don’t know how to take their pulse. I remember learning how to do this when I was young — my mother had worked in a bloodmobile, so she taught me how to do it. I still take my pulse twice a day.  

Another misconception is about blood thinners — I get a lot of questions about them. However, I’m reluctant to talk about my own experience with blood thinners to other patients. The important thing that I try to tell people is that this is not a medical book — it’s my story and it’s from the patient’s point of view. 

How important is having good communication with your doctor?

What I’m learning from the other AF patients who have read my book is that they’re afraid of asking questions and telling their story to their doctor. It’s something that comes up all of the time. Many of them have asked me: What do I do if I don’t have a good rapport with my doctor? What if my doctor isn’t listening to me and doesn’t understand how I feel? What if my doctor wants to prescribe medications that I don’t understand, and I don’t know the right questions to ask? When the doctor asks if I understand what they’re saying, I say yes because I’m afraid to say no. 

These patients want to change their hospital or clinic. I tell them, just change your doctor! Having a good doctor-patient relationship is important. I think doctors need to rely more on their patients’ comments, suggestions, and questions, and talk in a language that patients can understand. 

In your book, you describe how right before your ablation, as you were weaning off the amiodarone, you were in AF 50% of the time. How has your life changed since becoming AF free?

While I was still regularly taking amiodarone, it wouldn’t work about 10% of the time, so during those episodes, I couldn’t do much at all. I had a job where I traveled the country, so I did what I had to do and then made sure to rest. I was always afraid when traveling or going on a long trip. I remember going into AF while on a plane to Australia in 1990 — the symptoms came on as I was first starting out on the trip, and lasted for about 3 days. It was very scary. I was also on warfarin for 12 years and amiodarone for 17 years, and both had side effects.

In the last 10 years since I’ve not had AF, I’ve felt freedom! 

How important is lifestyle modification for patients with AF?

Well, lifestyle modification happens every year, whether or not it has anything to do with AF! As we get older, we can’t live like we did when we were 25 years old. Managing medications, eating healthy, and exercising are important. The key is taking care of your body. I just turned 80 and am probably in better physical shape than I have been in the last 20-30 years.

For more information, please visit: https://rosalieungar.com