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Dr. Douglas L. Packer, MD, FHRS, Mayo Clinic, Rochester, MN
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Jill and Steve Douglas, East Troy, WI
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Faye Spencer, Boise, ID, April 2017
“I think your site has helped a lot of patients.”
Dr. Hugh G. Calkins, MD Johns Hopkins, Baltimore, MD
Doctors & patients are saying about 'Beat Your A-Fib'...
"If I had [your book] 10 years ago, it would have saved me 8 years of hell.”
Roy Salmon, Patient, A-Fib Free, Adelaide, Australia
"This book is incredibly complete and easy-to-understand for anybody. I certainly recommend it for patients who want to know more about atrial fibrillation than what they will learn from doctors...."
Pierre Jaïs, M.D. Professor of Cardiology, Haut-Lévêque Hospital, Bordeaux, France
"Dear Steve, I saw a patient this morning with your book [in hand] and highlights throughout. She loves it and finds it very useful to help her in dealing with atrial fibrillation."
Dr. Wilber Su, Cavanaugh Heart Center, Phoenix, AZ
"...masterful. You managed to combine an encyclopedic compilation of information with the simplicity of presentation that enhances the delivery of the information to the reader. This is not an easy thing to do, but you have been very, very successful at it."
Ira David Levin, heart patient, Rome, Italy
"Within the pages of Beat Your A-Fib, Dr. Steve Ryan, PhD, provides a comprehensive guide for persons seeking to find a cure for their Atrial Fibrillation."
Walter Kerwin, MD, Cedars-Sinai Medical Center, Los Angeles, CA
“Your A-Fib is Just Nerves”…”Try Not to Think About It”; At 72 Finally A-Fib & PVCs-Free After 2 Ablations, But Then a Setback
I have been asked to write my story about my journey with A-Fib. I have had arrhythmias since I was a young woman. I was about 20 years old when I first experienced irregular heartbeats. I had gone to my doctor back then and was told it was “nerves” and to relax. This was how most women were treated by doctors back then. Everything was “nerves”.
Time passed, and the irregular heartbeats seemed to get worse at times.
In my 30’s, I remember going to another doctor and told him that when my heart would take off like a race horse, I could not breathe. And when it stopped, I felt I could climb a mountain again. He said, “try not to think about it.” What ????
I fought with these irregular heartbeats for many years. I was on different blood pressure meds that also helped with heartbeats, but I was never told to see a cardiologist or have a doctor investigate just what was going on.
Once or twice, when I was younger, a doctor had me wear a heart monitor. It was a 24-hour monitor. And when it showed nothing for that period of time, he said I was fine.
Sent to a Cardiologist Almost By Accident―Hard to Document the Arrhythmia
I worked for a medical facility, and one day about 15 years ago a young doctor came in for an interview. He sat in my office for a good amount of time while they were preparing for the interview. During this time, I got to talk to him a lot.
When he said he was an electrophysiologist [cardiac specialist], I asked about my irregular heartbeats. He was so kind and intelligent and gave me a lot of information to think about.
It was this young doctor who told me that I should see a cardiologist. So, I did. And I was treated with medications and had many heart monitors.
But it was always hard to catch the arrhythmias on an ECG or heart monitor.
“You are in A-Fib”―Two Weeks of A-Fib Hell…
Finally, in 2017 I had another [heart] monitor, and it showed a series of irregular heartbeats.
But on this one particular day, I had a very irritating rhythm. It was very fast, then irregularly fast, and I could barely breathe. I went to my PCP [Primary Care Physician] office where they did an EKG and said, “You are in A-Fib”.
They sent me immediately to my cardiologist who confirmed this. I was put on a different kind of med (Metoprolol at first and also Coumadin). And “fingers crossed” I would convert on my own.
I remember like it was yesterday, the moment my heart decided to go back into normal sinus rhythm. I was so happy and felt so strong…
…Then Blessed ‘Normal Sinus Rhythm!’
It took almost two weeks, but I remember like it was yesterday, the moment my heart decided to go back into normal sinus rhythm.
The feeling was like a major blessing had just descended on me. I was so happy and felt so strong in that very moment. I cried.
Dr. Seth McClennen―Successful Ablation! But PVCs Major Issue
I met with Dr. Seth McClennen, an Electrophysiologist, who decided I was a good candidate for ablation. I was so thrilled.
Finally, someone was going to help me be normal!
My whole life was spent afraid and never going anywhere alone for fear that my heart would act up and I’d be stranded someplace unable to breathe – unable to move. Finally, I found some help.
Dr. Seth McClennen is a well-known and most beloved Electrophysiologist here in the Boston area. He is the best in my book.
He told me all that I needed to know about ablation, and off I went for my very first A-Fib ablation in June 2017.
Although PVC’s don’t carry the risk of stroke as A-Fib but are just as debilitating.
It was successful! I went almost two years without an episode of A-Fib at all whatsoever.
However, my PVC’s were a major issue. They still kept me house-bound for the most part. Afraid to go anywhere alone. Although PVC’s don’t carry the risk of stroke that A-Fib has, they were just as debilitating.
A Second Ablation for PVCs―Without General Anesthesia―No Big Deal
Dr. McClennen suggested a second ablation for the PVC’s in January 2019. He said that it would be best if I could go through this without anesthesia, because with sedation, the PVC’s would “hide,” and the ablation would be difficult.
So, I did it … my trust in Dr. McClennen and his wonderful team outweighed any fear or apprehension on my part.
My second ablation was in April 2019. The ablation without sedation was no big deal at all. Now I am talking about a PVC ablation. Seth McClennen was right there working, and I could talk to him any time. He kept me informed as to what was going on.
At one point he said, “Think of something that irritates you so we can get these to come out, and I can follow the path.” So something that irritates me or causes stress will bring these out …. Well, it worked, and he was able to ablate these PVC’s.
Successful PVCs Ablation―Living Without Fear
For the first time in my whole life, I was able to move about without fear.
I could go to the store and feel normal—I was not worried that my heart would go crazy and I would be left in a puddle somewhere with no one to help me.
(Being a widow, it is very hard to continue life alone especially where your health is concerned. My husband died eight years ago when he was only 60 years old. I have never recovered.)
A Setback: Respiratory Infection Triggers A-Fib
Life was good as far as my heart was concerned. For three months I had no A-Fib or PVC’s. Then suddenly in April 2019, I got an upper respiratory infection which kicked off an episode of A-Fib. Oh no!!!…This familiar awful feeling was something I remembered.
It woke me up, and I immediately took my heart rate. It was 198. No one to take me to the hospital. And with my nerves, I did not want to call an ambulance. That was a BIG MISTAKE. I won’t do that again….
Anyway, a few hours later, my cousin came and took me to the Emergency Room.
They tried Cardioversion TWICE, but it did not work; so, I was put on the antiarrhythmic Tikosyn (dofetilide).
Tikosyn Works, But “Can I Have Another Ablation?”
I had to stay in the hospital for a week to level out and make sure this antiarrhythmic would be okay for me. It got my heart in perfect order, but I don’t want to stay on this forever.
So, my next question for my wonderful Dr. McClennen was “Can I have another ablation”? He answered, “Yes, we will discuss it in the Fall.”
Is Another Ablation on the Horizon?
So, I am waiting eagerly for Fall 2020 when we can discuss another A-Fib ablation. In the mean time, let me share what I’ve learned so far about treating Atrial Fibrillation.
Lessons Learned
Ablation is a Blessing and Low Risk―Better Than Living in Fear
Why do I feel excited about ablation? I truly feel that having an ablation is a blessing. And this is why I am writing this story for you.
I know there are risks and I know people are afraid of ablations, but the risks are nothing compared to living each moment of your life afraid to live.
Find a Great Doctor!
The trick is finding a great doctor. Not just a good doctor, but a great doctor. What makes a great doctor? Well, to ME … it’s someone who listened to me. Dr. Seth McClennen listened. He cared. He even wants me to email him when I have a concern or question. He always answers me. Always.
Kardia Device a Great Help
Using Kardia with tablet; under $100.
I have a Kardia machine – it’s that little EKG tag that you can email to your doctor. I have sent Dr. McClennen my EKG when I’ve had a question. More so now, with this antiarrhythmic drug, I am always tempted to take an EKG and send it to say “How am I doing?” Some days I just need to know my heart is in good order.
Find a Great Pharmacist As Well
It helps greatly to have a wonderful pharmacist too. Someone you can confide in and who will help you. The particular drug I am on interacts with so many things that I have to check everything with the pharmacist. Lisa Cohen Szumita is a wonderful pharmacist who is there to answer all my questions.
So, my advice is to have a great doctor – and a wonderful Pharmacist who has that rare quality these days of “Caring” for their patients.
Your Attitude is Your Greatest Weapon
As far as ablations go…your attitude is your greatest weapon.
If you are told you need an ablation, be blessed. Be thankful and blessed.
It’s what we AFIBBERS have to help us live a normal life. Thanks be to God! When you are going to have your ablation, go into that hospital thanking God and asking Him and His angels to surround you.
Are you in need of prayer? Positive thoughts? Read about our A-Fib Positive Thoughts/Prayer Group and how to send us your request.
Ask all of us here on the A-Fib.com website to hold you in prayer and good thoughts. That is what we are called to do.
Leave fear behind you – don’t bring fear into your procedure. Bring FAITH and JOY and PEACE. I went into that A-Fib ablation with such excitement—to finally live a life where I was not afraid to be in the store alone. A simple thing … but I was unable to do it. After ablation, my life was restored.
I was so very upset that an upper respiratory infection brought me down. But I am on the right track again. So for the time being, I will take this antiarrhythmic. (Please don’t send me any scary emails about what I take.) I’ve heard it all. I did all the reports at work that had any and all of these drugs listed. I know all about it. But for now, it’s what I have to do
When the Fall comes, if my cardiologist says I’m good for another ablation …. Well, thanks be to God !! …. And so it is.
P.S. I’ll update my story when I have something to share. If you want to write me, send an email to Steve and he will forward it.
Cecelia Hender Abington, Massachusetts
Addendum: December 2022
Cecelia Hender writes in an update that she had a Watchman implanted February 2022 at Brigham and Woman’s Hospital in Boston, MA.
“Now I am off of the Tikosyn (dofetilide) and also off of Eliquis. No more blood thinners. I am feeling well. The implant placement was a breeze, and I came home the same day. I had a wonderful team there.
I think God for all of this. Just wanted to bring you up to date.”
Editor’s Comments
I can’t help but get angry reading Cecelia’s story. After repeated heart rhythm complaints to her doctors, I can’t believe she wasn’t referred to a cardiologist.
She’s not alone with doctors dismissing women’s symptoms.
Other female patients have reported being told: “You’re experiencing a type of panic disorder.” “You’re exaggerating.” “A-Fib is no big deal.” “Take a Valium.” “Just take your meds and get used to being in A-Fib.”
Consequences of Gender Bias:If you are female, be prepared to experience gender bias in the medical field (but less so among Electrophysiologists [EPs]).
Don’t Just Live with A-Fib: Educate Yourself! Cecelia had irregular heartbeats for decades before she learned she should consult a specialist, a Cardiologist (an electrophysiologist to be exact).
Don’t be afraid to get a second opinion. Don’t be afraid to fire your doctor.
Thankfully Cecelia finally got her Atrial Fibrillation diagnosed. She then found one of the best electrophysiologists (EP) in her area. She learned about A-Fib. She got the best and most up-to-date advice and treatment. She had lived in fear of her A-Fib but found her cure in spite of her fears.
Catching the Arrhythmias: Cecelia describes very well her frustration when doctors tried and failed to document her A-Fib. All too often when you have occasional (paroxysmal) A-Fib, you’ll be in the doctor’s office and your heart is in normal sinus rhythm (NSR). If you’re not in A-Fib, they can’t document it with an ECG. Frustrating!
(I remember spending all morning in a doctor’s office waiting for an A-Fib attack so that an EKG can document it. But no luck. Then when I went downstairs for lunch, that‘s when I had an A-Fib episode.)
iRhythm Zio patch
Advancements in Heart Monitoring. Today doctors have any number of monitoring and data recording devices to “catch” A-Fib episodes.There are patches such as a Zio Patch which looks like a big Band Aid and which you wear for 1 or 2 weeks.
Medtronic Reveal LINQ
Another is an implantable loop recorder like the Medtronic Reveal LINQ which is inserted under your skin in a very simple, fast procedure. (I’ve had one for the last 1 1/2 years). It lasts for three years and tells doctors (and you) what’s going on in your heart 24/7.
Today your doctors are much more likely to “catch” and document your irregular heartbeats.
Dealing with PVCs: We’re most grateful to Cecelia for describing how Dr. McClennen fixed her PVCs which are a major issue for some people with A-Fib.
Maybe the key to ablating PVCs is no sedation or conscious sedation rather than general anesthesia. (I’ll try to get more info on Dr. McClennen’s methods of ablating PVCs.)