Doctors & patients are saying about 'A-Fib.com'...


"A-Fib.com is a great web site for patients, that is unequaled by anything else out there."

Dr. Douglas L. Packer, MD, FHRS, Mayo Clinic, Rochester, MN

"Jill and I put you and your work in our prayers every night. What you do to help people through this [A-Fib] process is really incredible."

Jill and Steve Douglas, East Troy, WI 

“I really appreciate all the information on your website as it allows me to be a better informed patient and to know what questions to ask my EP. 

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


A-Fib Patient Stories

Patient Advice: The First Doctor You See isn’t Necessarily the Right One for You

Advice from Patients Now Free from the Burden of Atrial Fibrillation

Susan Klein, comes from a long line of people with cardiac rhythm disorders. She recalls finally being properly diagnosed:

Susan K.

“I began reading everything I could about the condition but mainly how to make it stop.

Along the way I can’t recall how many times I was told to take the medicine and stop looking for trouble. 

I’m so glad I didn’t listen to the naysayers, because today I’m A-Fib free and loving it.”

Warren Welsh, Melbourne, Australia, talks about the years he needlessly endured A-Fib, in part, based on one doctor’s advice:

Warren W.

“I would urge any A-Fib sufferers not to make the same mistakes I did by not researching their treatment options.

…I experienced several years of unnecessary suffering by accepting an opinion of one specialist who said I would have to live in A-Fib.

Sheri Weber, from Boyce, VA, shared this advice about finding the right doctor for your treatment goals:

Sheri Weber on A-fib.com

Sheri W.

“I wish I had realized that the first doctor you see is not necessarily the right one for you. I fooled around way too long, believing what my cardio doctor said. I should have been thinking outside the box. 

Run―don’t walk―to the best specialist you can find in your area.” 

How to Find the Best Doctor for You

To be cured of your A-Fib, you may need to ‘fire’ your current doctor.

Seek a heart rhythm specialist, a cardiac electrophysiologist (EP), who will partner with you to create a treatment plan—a path to finding your cure or best outcome.

To make this happen, see my page, Finding the Right Doctor for You and Your A-Fib.

The First Doctor You See is Not Necessarily the Right One for You.


From The Top 10 List of A-Fib Patients’ Best Advice’ , a consensus of valuable advice from fellow Atrial Fibrillation patients; Chapter 12, Beat Your A-Fib: The Essential Guide to Finding Your Cure by Steve S. Ryan, PhD.

Go to Top 10 List of A-Fib Patients’ Best Advice
Please, share the advice ♥ 

Daniel Shares About A-Fib: “I Have Gotten a Lot of Bad Advice From Various GPs”

Advice from a patient now free from the burden of Atrial Fibrillation: Educate yourself on all treatment options before making decisions.

Daniel Doane, Sonora, California, talks about all the false info he got from doctors.

“Don’t believe your GP. I have gotten a lot of bad advice from various GPs.

Daniel D.

• ‘Just take a little digoxin and you will be fine.’
• ‘You are probably missing some micro-nutrient. If you buy this product I sell, it may well provide that and stop your A-Fib.’
• ‘I think that all of these tests your EP is requesting are just a waste of money.’
• (From a cardiologist) ‘Don’t worry about a little A-Fib. It won’t kill you.’ “

“If you have Atrial Fibrillation, see an electrophysiologist. If you aren’t comfortable with what they are saying, see another one.” 

Daniel did his research and is now A-Fib-free after a Totally Thoracoscopic (TT) Mini-Maze operation.

If you want to read more of Daniel Doane’s story, you’ll find it on pp. 152-162 in Beat Your A-Fib: The Essential Guide to Finding Your Cure by Steve S. Ryan, PhD. Learn more about my book.

Don’t Believe Everything You’re Told About A-Fib

In Daniel’s story you read how important it was for him to educate himself. You, too, can learn about all your treatment options. Check our Treatments section covering diagnostic tests, common mineral deficiencies, drug therapies, cardioversion, catheter ablations, surgery and more.

Next, read answers at FAQ: About A-Fib Treatments Options including natural therapies and holistic treatments.

In addition, you may want to browse our A-Fib Video Library and check our list of Online Discussion Groups.

Finally, ask yourself, ‘What are my treatment goals?”, then read our Q&A section: Decision About Treatment Options.

Remember: Always Aim for a Cure.

For a Life Free of A-Fib—Make Things Happen

Advice from Patients Now Free from the Burden of Atrial Fibrillation

Frances K.

Frances E. Koepnick, Athens, GA, shares bad advice from two doctors:

“The advice of the first two cardiologists was to ‘just take my medications and live with A-Fib’. If your cardiologist recommends this treatment regimen, I urge you to get a second, third or even fourth opinion.”

John & Marcia T.

John Thorton from Sioux Falls, SD, wrote about ignoring the bad advice from his doctors:

Be Assertive, Even Aggressive: I had to set up my own appointment at Mayo [Clinic] to get evaluated there. It was a lot of work, by me alone, to get in to see the doctors at Mayo, but it was worth it.”

Tony Hall, Evansville, IN. Now A-Fib-free, he advises to learn as much as you can about A-Fib:

Tony & Jill

“Jill and I read as much as we could on the internet…[but] do not get obsessed with the internet. There is much misinformation on the internet, so do not get too caught up in that information.

Ask Questions: None are stupid. This is YOUR heart. This is YOUR life. Learn as much as you can.”

Joan Schneider, Ann Arbor, MI, tells of her astonishment at how little her doctors told her about A-Fib:

Joan S.

“I was so desperate for answers I started searching on-line. My jaw hit the table. [She said to herself…] ‘How could my physicians not explain these things to me?’ Once I was able to really comprehend my future, I was able to make things happen.

Best advice: Don’t be afraid to fire your physician, and be your own advocate.”

Over 90 stories of inspiration at A-Fib.com

For More Personal Insights

It’s encouraging to read how someone else has dealt with their A-Fib. These A-Fib patients have been where you are right now. They tell their stories to help bolster your determination to seek a life free of A-Fib. For more personal experiences, go to Personal A-Fib Stories of Hope and Encouragement.

For a Life Free of Atrial Fibrillation

Make Things Happen

Become Your Own Best Patient Advocate!

Update to Sandy’s Story (2014): Undiagnosed Sleep Apnea

When Sandy developed A-Fib in 2002, she insisted on managing it with drugs (but no blood thinner). At the time she was also coping with persistent vertigo and dizziness from a traumatic brain injury, an increasingly abusive spouse and ultimately no health insurance because of her pre-existing condition (until she became Medicare eligible).

In her March 2014 story, she wrote:

Sandy from Boston Personal Experience Story A-Fib.com

Sandy from Boston

“By 2014 I truly felt as though I had ‘reached bottom.’ … I thought about the A-Fib.com website and went to it and read many personal stories about A-Fib and ablation procedures. … It made me realize that if I survived being a teenager, riding horses, driving fast cars, having children late in life, living in an abusive marriage for years……..then, it was about time I gave ablation a try.”

In a recent update to her personal A-Fib story, Sandy from Boston wrote:

Hi, Dr. Ryan and everyone at A-Fib.com. I would like to update you.

After my [successful] CryoBalloon ablation at BWH in 2014, I underwent a sleep study that revealed during REM sleep I stopped breathing an average of 32 times every hour. My physician suspected that my traumatic brain injury in 1995 caused my undiagnosed sleep apnea, which in turn caused Paroxysmal A-Fib. I have been using a CPAP since July 2014.

Not Even One A-Fib Episode Since February 2014! I cannot thank you enough for your website and the info you provided to me that led to my CryoBalloon ablation. My physicians and I knew that I was headed for a stroke. My prayers were answered when I found your website. You saved my life! Thank you.

I’m also off all medications—no blood thinners or beta blockers!!! YEA!!!

We are so happy for Sandy. With the struggles she has dealt with, she deserves all life’s blessings. It’s a miracle that Sandy lasted 12 years in Paroxysmal A-Fib without going into permanent (persistent) A-Fib. Many people go chronic in one year.

Should You be Tested for Sleep Apnea?

Obstructive Sleep Apnea (OSA) is so common that at least 43% of patients with Atrial Fibrillation also suffer with it. For that reason alone, you should be tested for sleep apnea.

Sleep apnea is very often a trigger or cause of A-Fib, probably because of the strain and labored breathing it puts on the Pulmonary Veins where most A-Fib comes from.

Ask your sleeping partner if you snore or have labored breathing while you sleep. The remedy is usually simple and works very well.

To learn more, see our posts: Sleep Apnea: When Snoring Can Be Lethal and Sleep Apnea: Home Testing with WatchPAT Device and the Philips Respironics. 

See an A-Fib Expert Right Away—a Heart Rhythm Specialist 

‘Find the best heart rhythm specialist (EP) you can afford.’

A-FIB PATIENTS’ BEST ADVICE

From Beat Your A-Fib: The Essential Guide to Finding Your Cure, Chapter 12: Your Journey to a Cure:

Michele Straube

Michele S.

Michele Straube, cured after 30 years in A-Fib, wrote in her personal A-Fib story:

Go to an electrophysiologist, an A-Fib expert, right away, one with a high success rate at getting patients back into normal rhythm—you deserve nothing less.” (pp. 88-90)

Terry DeWitt, cured in 2007 from a clinical trial for CryoBalloon ablation, offered his best advice:

Terry Dewitt at A-Fib.com

Terry D.

“Spend the time to find the best Electrophysiologist (arrhythmia specialist) you can find. It makes a big difference in treatment and in the success of the ablation procedure.” (pp. 138-143)

How to Find the Best Doctor for You

To be cured of your A-Fib, seek a heart rhythm specialist, an cardiac electrophysiologist (EP), who will partner with you to create a treatment plan—a path to finding your cure or best outcome.

To make this happen, see my article, Finding the Right Doctor for You and Your A-Fib.

Run―don’t walk―to the best specialist
you can find in your area.


‘The Top 10 List of A-Fib Patients’ Best Advice’ is a a consensus of valuable advice from fellow patients who are now free from the burden of Atrial Fibrillation. From Chapter 12, Beat Your A-Fib: The Essential Guide to Finding Your Cure by Steve S. Ryan, PhD (beatyoura-fib.com)

Top 10 List of A-Fib Patients’ Best Advice
Please, share the advice ♥ 

Our Many First-Person A-Fib Stories—Will You Write Our 100th?

Other A-Fib patients have been where you are right now. So far, 99 patients have shared their personal experience with Atrial Fibrillation (starting with the Steve Ryan’s story in 1998).

Each story is told in the the writer’s own words. Some stories are brief and concise, some are retold like diary entries, other stories read like a suspense novel. Some stories are straightforward, others unfold and span years, even decades. Symptoms vary, and treatments choices run the full gamut. Many writers include their email address if readers want to contact them directly.

While many writers are now A-Fib free, some are not, but have found the best outcome for their situation.

Nevertheless, all our writers have the same objective—to offer you hope, to encourage you, and to bolster your determination to seek a life free of A-Fib.

Will Your Story be our 100th?

Are you thinking of sharing your A-Fib story? To learn more (including how to send in your story), see Contribute Your A-Fib Story, Share Your Lessons Learned.

It’s encouraging to read how someone else has dealt with their A-Fib. Won’t you reach out to others with A-Fib? Let them know they are not alone.

With your story, we can soon start using our new graphic poster (we can add your photo, too!)

My First-Hand Experience with our Positive Thoughts/Prayer Group

One of the best things we’ve ever done at A-Fib.com is setting up the Positive Thoughts/Prayer support group. When you have an important treatment decision or an upcoming procedure or surgery, you can contact our volunteer group and ask for their support.

My Personal Experience: Prayer and Positive Thoughts

At A-Fib.com, we believe in the healing power of prayer and of positive thoughts!

Instead of just writing about this phenomenon, I experienced it myself when I asked the group for positive thoughts & prayers for the success of my upcoming intestinal surgery on March 28, 2018.

So may people emailed me such heartfelt support it brought tears to my eyes. It was very encouraging to know I wasn’t alone, that so many cared about me. Can’t thank you all enough! (BTW: My post-op is going well.)

Are You Seeking Guidance from a Higher Power?

Are you in need of prayer? Positive thoughts? To learn how to send in your request, go to our A-Fib.com Positive Thoughts/Prayer Group.

Additional Reading

The Anatomy of Hope: How People Prevail in the Face of Illness by Jerome E. Groopman. Written by an oncologist and citing actual patient cases (mostly cancer), Dr. Groopman explores the role of hope in fighting disease and healing. Top scientists are interviewed who study the biological link between emotion and biological responses; the most relevant studies are reviewed.

The author shows how hope, belief and expectations can alter the course of our lives, and even of our physical body. HOPE works! (Read my review on Amazon.com.)

Listen to an audio interview with The Anatomy of Hope author, Dr. Groopman on NPR’s Fresh Air program (recorded Sept. 2004; 20 min.)

Story Update: Ashley Mogg, a 23-Year Old Jamaican, Now A-Fib Free!

I’ve seldom been so happy to write about an A-Fib success story (actually an update)! A story that had such a miserable beginning.

A-Fib at 17 and Started Losing Sight!

Eighteen months ago, I wrote a story about 21-year-old Ashley Mogg from Jamaica. Her A-Fib was horrible. Her first A-Fib attack came at age 17 when she had just stopped playing field hockey. Ashley wrote:

Ashley Mogg from Jamaica

“I was feeling extremely unfit. My heart rate sped up and my chest got tight. My throat felt like it was closing, and I was starving for a breath. Then the most frightening thing happened―I started losing my sight! Pitch black was all I saw. I could hear my friend talking to me through it. It was so scary for me.”

Her doctor told her losing sight was a symptom of pre-faint or pre-syncope. Her stress test showed a heart rate that at times went up to 270 bpm.

Clinical Depression Sets In

To make matters worse, her cousin died suddenly. Then Ashley had to have an appendectomy which revealed a low grade Neuroendocrine tumor (cancer). Coupled with her dreadful A-Fib symptoms, she became extremely depressed and anxious (clinical depression is all too common in new A-Fib patients). She also suffered weight loss and became very thin.

No A-Fib Centers in Jamaica

Unfortunately, when I researched resources for her I couldn’t find any A-Fib centers or Electrophysiologists in Jamaica. It was heart breaking that such a young woman had such a debilitating case of A-Fib, and I couldn’t find anyone near her to take care of her.

November 2016: Asking for Funding and Help for Ashley

What I did was publish her story on A-Fib.com and ask for donations to pay for her to see an EP in the U.S. (Read Jamaican Woman, 21, Living in A-Fib with Meager Treatment)

Dr. Natale confirmed that there was no EP lab in Jamaica and would try to find money from the A-Fib industry to help Ashley.

In addition, I sent Ashley’s story to Dr. Andrea Natale, a master EP with a world-wide reputation. A colleague of his, Dr. Francesco Santoni, emailed me that he tries to help arrhythmia patients in Jamaica through the Rotary Club and another foundation. Travis Smith, President of the Rotary Club of Downtown Kingston, Jamaica championed Ashley’s cause.

Dr. Natale suggested we work with Dr. Lisa Hurlock in Kingston, Jamaica at the University of the West Indies who could follow her arrhythmia. She met with Ashley and her mother, Loretta. Dr. Natale confirmed that there was no EP lab in Jamaica. He said he would try to find money from the A-Fib industry to help Ashley.

Dr. Natale’s Heroic Efforts to Help Ashley―Biosense Webster Donation

Dr Andrea Natale

Dr Andrea Natale

Dr. Natale obtained a donation from Biosense Webster (Johnson & Johnson) to cover travel expenses for Ashley and her mother to St. David’s Medical Center, Austin, TX including lodging, food and transportation. He also arranged for St. David’s to waive all fees for Ashley’s catheter ablation. The Texas Cardiac Arrhythmia Foundation accepted donations to help Ashley. Barbara Thomas and Amy Dixon coordinated everything at St. David’s.

(I probably don’t have all the names of everyone involved in helping Ashley. Please email me if I haven’t mentioned you or someone else who helped.)

Ashley, mom Loretta and hospital staff

July 2017: Ashley Has Her Ablation & is A-Fib Free!

On July 19, 2017, Ashley had her ablation. She is now A-Fib free. It was performed by Dr. Natale and his team at St. David’s Medical Center, Austin, TX. Since then, she has written that she is doing fine and has started college in Jamaica (she wants to go to medical school).

In an excerpt from her personal story (written before her ablation became a reality), Ashley shared these lessons learned:

“Educate Yourself―Find the Best Doctors Available. If you live in a country like myself where there are very few Electrophysiologists or heart rhythm specialists, find a reliable cardiologist as well as a general doctor who know your history. Do maximum research on your own and with your doctor and health care professionals. Stay informed.
…Stay positive…You are NOT ALONE!”

Remarkable for a 21-year old who has had a rapid beating heart since childhood.

March 2018 Update: Email from Ashley’s Mother

Loretta Mogg, Ashley’s mother recently wrote me:

Ashley and her mom, Loretta

“I am Loretta Mogg, the mother of Ashley Mogg. I want to express a heartfelt thanks to you for posting my daughter’s story and seeking help for her.
Just a little update. After nearly a year since her ablation, she is back in University and doing well. She is still determined to become a doctor.
Thank you for allowing God to use your own experience to change the life of another. Blessings to you and your family.”

Thanks to All, Especially to Dr. Natale

It’s impossible to adequately thank everyone, especially Dr. Natale, who helped Ashley in her incredibly difficult A-Fib journey.

I don’t know if we’ll ever understand how a young 17-year-old woman could develop such awful A-Fib symptoms. (Perhaps it related to her cancerous appendectomy.)

Faith and a Purposeful Life

Kudos to Ashley for not giving up with all she went through! She’s an incredible young woman. She had to grow up fast. She became a woman of faith with a purposeful life. In her own words, “It takes prayers and positive thinking to keep living with peace of mind.”

Be Inspired: You, too, Can Help Others With A-Fib

One-to-One, our A-Fib Support Volunteers are just an email away at A-Fib.comOne way to live a life of faith and purpose is to help others suffering with Atrial Fibrillation. Join our Prayer and Positive Thoughts group or our A-Fib Support Volunteers group.

Offering hope: Having someone you can turn to for advice, emotional support, and a sense of hope that you can be cured, may bring A-Fib patients (and their families) peace of mind.

We are blessed to have many generous people who have volunteered to help others get through their A-Fib ordeal (not all are ‘cured’). To learn more and how you can join the effort, see my article: ‘Want to Become a A-Fib Support Volunteer?

New A-Fib Story: Relentless After 2 Failed Ablations―Leads to a 3rd Using the ECGI Vest

We’ve posted a new personal A-Fib story by Martin Johnson from Champaign, IL. His story also includes a post-script by his doctor, Dr. Phillip Cuculich, Barnes-Jewish/Washington University. Martin did a lot of research in his years with A-Fib. He learned about the Medtronic ECGI vest, an advanced mapping technology and about its inventor, and the benefits of the contact force sensing catheter.

Martin Johnson

Martin’s A-Fib first occurred in 2003 during a game of underwater hockey (an extreme sport requiring swimming under water while pushing a lead puck from one end of the pool to the other).

Martin shares with us:

At first, I thought “well I did just swim 25 yards under water as fast as I could, so maybe this is just normal”. It lasted about 20 seconds. The attacks quickly increased their duration to a couple hours each over the next couple months. I was forced to give up the game I’d been playing since age 37.
For the first couple of years I only got attacks after physical exertion. As time went on, less and less exertion was required to trigger one. After going through 6 different drugs, most of which had no effect, one of which almost killed me and another that modified my attacks, I had no net improvement. 

“My EP’s prognosis was―’ever more often, ever longer attacks until I would be in permanent A-Fib’”.

After seven years with A-Fib, I was getting approximately 24-hour long attacks about every four days plus occasional attacks triggered by physical exertion.
I had my first RF ablation in July of 2010. Two hours after the ablation, I was in A-Fib again.

My A-Fib attack timing continued without letup— 24-hour-long attacks every 4 days. I agreed to a second ablation 6 months later. …Continue reading Martin’s A-Fib story->

At 55, A-Fib After Underwater Hockey, Then 2 Failed Ablations & a 3rd Using the ECGI Vest

By Martin Johnson, Champaign, IL. March 2018
With a post-script by Dr. Phillip Cuculich, Barnes-Jewish/Washington Un.

Martin Johnson

“My first A-Fib attack that I noticed, occurred in 2003 when I was 55 years old during a game of underwater hockey, an extreme sport requiring swimming under water while pushing a lead puck from one end of the pool to the other.

At first, I thought “well I did just swim 25 yards under water as fast as I could, so maybe this is just normal”. It lasted about 20 seconds.

The attacks quickly increased their duration to a couple hours each over the next couple months. I was forced to give up the game I’d been playing since age 37. I switched sports to softball, but that soon became impossible too, as I got an A-Fib attack every single game (but oddly, never at a practice).

A-Fib Progresses―Attack Just Sitting at Desk

For the first couple of years I only got attacks after physical exertion. As time went on, less and less exertion was required to trigger one.

I had my first attack without any kind of physical exertion while sitting at my desk at work. It scared me enough to see the local EP who recommended that I get an ablation. I thought that was too aggressive and instead started to try various drugs.

“My EP’s prognosis was―’ever more often, ever longer attacks until I would be in permanent A-Fib’”.

After going through 6 different drugs, most of which had no effect, one of which almost killed me and another that modified my attacks, I had no net improvement. My EP’s prognosis was “ever more often, ever longer attacks until I would be in permanent A-Fib”.

By 2010, I was getting approximately 24-hour long attacks approximately every four days plus occasional attacks triggered by physical exertion.

My First Ablation

I had my first RF ablation in July of 2010. I asked the EP if I should be in my natural A-Fib before the ablation, so that he could locate the problem cells. He said ‘no’. Instead, he induced A-Fib chemically. His approach was to isolate the PVs and draw several other lines in the left atrium. He then ablated the cells that he could detect taking part in the A-Fib that he induced.

He successfully got my heart back into Sinus Rhythm (SR), and was unable to further induce A-Fib. His OR report says that he expected this to have been a cure. (An O.R. [Operating Room] report describes what the EP did during the ablation.)

Two hours after the ablation, I was in A-Fib again.

In A-Fib Again―Leads to a Second Ablation

My A-Fib attack timing continued without letup— 24-hour-long attacks every 4 days. I agreed to a second ablation 6 months later.

“Two hours after the ablation, I was in A-Fib again.”

The OR Report for the second ablation was essentially the same as the first, and so were the results. After both ablations, I acquired new arrhythmias that annoyed me even while not in A-Fib. After about 6 months, the new arrhythmias abated, and my A-Fib pattern changed to 24 hours every 7 days—a small but welcome improvement.

Over the next five years, the attacks became longer and more frequent— by Jan 2016, I had 45 hours of A-Fib every 7 days.

Third Ablation? I Needed an Edge

Still I was not optimistic about a third ablation considering my previous poor results.

Medtronic ECGI vest

I decided I needed an edge—something that might be able to find whatever oddball A-Fib cause made me difficult to cure. The one thing that stuck out in my reading was the Medtronic ECGI vest used in Bordeaux, France by Dr Haissaguerre and others. [See How ECGI (Non-Invasive Electrocardiographic Imaging) Works.]

The 256 electrode ECGI vest enabled the graphic display of the electrical activity of the heart passively and totally non-invasively. Unfortunately, Dr Haissaguerre’s office would not respond to any of my attempts to contact him. And I learned that the FDA would not permit the use of the vest in the US as part of an ablation procedure.

Travel to St. Louis Where the ECGI Vest Was Invented

It seemed that all doors to the vest were shut. After some investigation, I discovered that the vest had actually been invented in the US at Washington Un. in St. Louis, MO. In January 2016

“I volunteered for a study…that might help me get use of the vest in spite of the FDA.”

I called up the inventor’s lab to get as much information as I could. I volunteered for a study with the hope of making connections that might someday help me get use of the vest in spite of the FDA.

In January 2017, I went to St Louis and got a CT scan and a vest recording for the study I had volunteered for. While there, I noticed a Dr. Cuculich come into the lab to borrow a vest. I immediately thought, this is the guy I need to keep track of.

FDA Approves Medtronic ECGI Vest―My New Hope!

Then the next month, Feb 2017, the FDA approved a commercial version of the vest made by Medtronic for use with A-Fib ablation.

By this time, I was having 48 hour attacks every 4 days. I called Medtronic to get a list of who in the US had bought the vest and who had any experience using it. To my relief, Barnes-Jewish Hospital in St Louis was one of only four buyers, and Dr Cuculich already had experience using the vest on non-A-Fib applications.

Now that I had located a possible vest practitioner, I still had to resolve other concerns. In particular, even Dr Haissaguerre in France didn’t use the vest on paroxysmal A-Fibbers. He only used the vest on patients with permanent A-Fib. I don’t know why. I was convinced that being in my natural A-Fib and not in chemically induced A-Fib, was essential to find the real causes. I also knew that I could put myself into A-Fib by physical exertion.

BisenseWebster Smart Catheter illustrations

Example of Contact force catheter (Biosense Webster)

Another Technology Edge: The Contact Force Catheter

Another technology that seemed important was the technique of dragging the catheter in order to burn a continuous line, rather than trying to burn individual dots. To help with this, a contact force catheter also seemed necessary. I first became aware of this due to a paper written by Dr Natale of Austin, TX. (see Resources below for article.)

A Concern: I Don’t Want to Lose My LAA

Another concern of mine was the insistence by some EPs to electrically isolate the Left Atrial Appendage (LAA).

“…in my mind…if the ablation worked, there would be no advantage to having closed off the LAA.”

During A-Fib, the blood in the LAA becomes stagnant, permitting the formation of clots.

But cutting off incompletely understood parts of one’s heart seemed exceedingly rash. Also, if the ablation worked, there would be no advantage to having closed off the LAA. So, closing off the LAA was just preparing for a failed ablation, in my mind.

About the Left Atrial Appendage (LAA)

What little is known about the LAA includes the fact that it is the source of heart stem cells needed for repair of the heart.

It was once thought that the heart cells you died with were the same ones you were born with. The latest belief is that about 40% of your heart is replaced during a full life.

This is a function I did not want to lose.

The LAA is also the source of a hormone which helps control blood pressure. The LAA also has a pumping function in parallel with the Left Atrium. And electrically isolating the LAA can often significantly reduce the contractile function of the LAA, thus making it a source of clots even when the heart is not in A-Fib.

Consulting Dr. Phillip Cuculich at Barnes-Jewish/Washington Un.

I called up Barnes-Jewish to inquire about my above listed concerns. Dr Cuculich called back and assured me that he was able and willing to meet all these requests:

1) Use the ECGI vest during ablation even though I’m paroxysmal;
2) To expect me to be in my organic A-Fib;
3) After getting me into Normal Sinus Rhythm, chemical induction of A-Fib was OK to track down more problems;
4) Use a contact force catheter and draw continuous lines rather than dots;
5) Leave my LAA electrically and physically intact.

Third Ablation―Running Up Flights of Stairs

The night before the scheduled ablation, I ran up and down a flight of stairs ten times which put me in my organic A-Fib in preparation for the following morning’s ablation.

On Nov 2, 2017, two Medtronic technicians fitted the 3-piece vest onto my torso. The ablation procedure took 5 hours—a lot longer than Dr Cuculich was planning on.

I woke up in NSR! The doctor noted that an A-Fib source in a pulmonary vein was active, but was already successfully being blocked by the ablation.

In Normal Sinus, But Short Bursts of A-Fib

Since the ablation 3.5 months ago, I have had about 15 A-Fib attacks totaling about 7 hours of A-Fib. [It’s not uncommon for A-Fib to reoccur during the three month ‘blanking period’ following an ablation.]

I believe every attack was triggered by drinking cold water. It took me a while to figure that out. I have not had an attack for the last month, during which I was able to remember ‘no cold water’!

Lessons Learned

For future reference: I read that Dr Cuculich was the lead investigator in a study of a totally non-invasive ablation procedure that uses the Medtronic vest to find the problems and ‘multi-beam focused radiation’ to ablate the errant heart cells.

I’m hoping that if my A-Fib comes back, that the FDA won’t have been as slow permitting this new method, as they were with the vest (see Resources below for link).

In light of my experience, I would recommend that no one get an ablation without the advantage of the Medtronic ECGI vest. Without it, the EP is only guessing.

Using canonical ablation patterns that might have worked on some group of A-Fibbers, or using the old fashioned way of dragging a sensing catheter along the entire inner surface of a beating heart looking for electrical anomalies, is laughable to me.

It’s no wonder that my first EP couldn’t find the A-Fib sources inside my coronary sinus and right atrium. I welcome your emails.”

Marty Johnson
martyj1949(at)yahoo.com

Comments from Dr. Phillip Cuculic

Electrophysiologist Phillip Cuculich, MD

Phillip Cuculich, MD

“Thank you, Steve, for the chance to reply [to Martin’s A-Fib story]. And thank you, Martin, for sharing your story with the world. Brave patients and advocates like you are a powerful combination in today’s world of medicine.

Our understanding of any arrhythmia mechanism falls into two bins: the initiating event (triggers) and the sustaining circuit.

Over the past several decades, invasive procedures have identified common locations that harbor AF triggers, which is how pulmonary vein isolation has been an effective procedure to control AF for most patients. In general, we as a field have struggled in identifying reproducible non-PV triggers and the sustaining AF circuits.

One reason for our struggle is the tools with which we measure. A second reason is that each person’s AF is different, so the findings of one group of patients is not easily applicable to an individual patient that I meet for consultation.

Martin’s experience with noninvasive ECGI is a wonderful example of personalized medicine: treating an individual patient’s AF physiology. Credit for the development and clinical validation of this technology goes to the scientists, clinicians and industry development teams which include Dr. Yoram Rudy (Washington University), the amazing scientists who graduated from his lab, the intrepid clinical and investigational teams in Bordeaux, France, and the hard-working developers at CardioInsight and Medtronic.

Presently, thoughtful application of noninvasive ECGI is getting us closer to personalized AF treatment. Further development, testing, and refinement of the ECGI system is underway. While there is much more to accomplish in understanding the critical components of each individual patient’s AF, one cannot help but hear the hope dripping from the story that Martin shared.”

Editor’s Comments
I admire Martin’s tenacity in seeking his A-Fib cure after two failed catheter ablations. He educated himself about his disease and its treatments. Then he sought out an EP who would meet his needs, even drawing up a five-point check list to discuss before his third ablation. Well done, Martin!
Martin’s O.R. Report: Dr. Cuculich found all Martin’s PV’s were still not isolated or had re-connected. After his two previous ablations, all Martin’s PVs had connected/re-connected. Dr. Cuculich also found many gaps in Martin’s previous roof and mitral isthmus ablation lines.
ECGI Vest Found Hard-To-Map Drivers: The Medtronic ECGI Vest mapping system found Non-PV driver areas in Martin’s heart that easily could have escaped notice with routine mapping systems, areas such as the Coronary Sinus, Left Superior Pulmonary Vein and lateral Right Atrium.
During Dr. Cuculich’s ablation, Martin’s A-Fib/Flutter terminated when his Coronary Sinus was effectively ablated and isolated. This is considered the best outcome of an ablation. Most EPs would have stopped at this point. But because the Medtronic ECGI vest had indicated there were more A-Fib signal sources not yet ablated, Dr. Cuculich ablated those areas as well.
Medtronic ECGI Vest Very Effective! Martin’s A-Fib was a difficult case after two failed ablations. Instead of the usually 2-3-hour ablation, Martin’s took 5 hours, probably because the previous 2 ablation lesions made the third ablation more complicated.
The Medtronic ECGI Vest seems to be a major advance and improvement in the treatment of A-Fib. It certainly worked in Martin’s case. But at this time, few centers in the U.S. are using it and are only beginning to develop significant experience. This is because Medtronic wants the system to work as best as possible before making it more widely available.
What this means to patients: If you have persistent A-Fib or would be considered a potentially difficult case, try to find a center or EP with experience using the Medtronic ECGI Vest (even though you may have to travel.) It seems to be the next major advance and best mapping/ablation system on the market.

References for this Article

Kolata, G. A ‘Game Changer’ for Patients With Irregular Heart Rhythm. The NewYorkTimes.com, Dec. 13, 2017. https://www.nytimes.com/2017/12/13/health/heartbeat-tachycardia-radiation.html

Cuculich, P. S., et al. Noninvasive Cardiac Radiation for Ablation of Ventricular Tachycardia. December 14, 2017. N Engl J Med 2017; 377:2325-2336. DOI: 10.1056/NEJMoa1613773. http://www.nejm.org/doi/full/10.1056/NEJMoa1613773

Ryan, S. The New Era of Catheter Ablation Technology: Force Sensing Catheters. A-Fib.com http://a-fib.com/moussa-mansour-md-force-sensing-catheters-2014-bafs/

Ryan, S. The Role of the Left Atrial Appendage (LAA) & Removal Issues. A-Fib.com http://a-fib.com/left-atrial-appendage-role-and-removal-issues/

Natale, A., et al. Paroxysmal AF Catheter Ablation With a Contact Force Sensing Catheter: Results of the Prospective, Multicenter SMART-AF Trial. Journal of the American College of Cardiology, 2014. ISSN: 1558-3597, Vol: 64, Issue: 7, Page: 647-56. https://doi.org/10.1016/j.jacc.2014.04.072

Learn about sharing your A-Fib story

Return to: Personal A-Fib Stories

If you find any errors on this page, email us. Y Last updated: Friday, June 22, 2018

Big Payoff: An A-Fib Diary Helps You Cope

Pat Truesdale’s Atrial Fibrillation was very symptomatic and she could not tolerate any of the medications. In her personal A-Fib story, she shares how keeping an A-Fib Diary helped her cope. Through interpreting her log entries, she learned what triggered her A-Fib, what signs indicated an A-Fib attack was coming on, and some actions she could do that helped her during an A-Fib episode:

63. Personal Experience of Pat Truesdale

Pat Truesdale, now A-Fib free

“…I began to learn what activated my A-Fibs and what helped during my episodes. This was a real discovery about me! I learned that ice drinks, full meals, and caffeine all triggered my A-Fibs. I started a diary to record all my symptoms.

With Steve’s [Ryan] suggestion and my local cardiologist’s, I now know I have Vagal Lone A-Fib. This means certain conditions can trigger my A-Fib attacks. This is what I learned triggers my A-Fib:

• Iced Drinks
• 
Caffeine
• 
Heavy meals
• 
Quiet times relaxing
• 
Sleep time at night
• 
Medicines
• 
Blood pressure going up
• 
Low pulse

Here are some symptoms I discovered that are indications an A-Fib episode is coming!

• High blood pressure
• 
Belching
• 
Heartburn
• 
Frequent need to pee (also ISH symptom—Isolated Systolic Hypertension)
• 
Low pulse while exercising (A-Fibs never happened during exercise)
• 
Flutters or skipped heart beats
• 
Light headache (BP is higher)

Here are some things that help me during my A-Fibs:

• Knowing A-Fib would occur after exercising while I am resting.
• Take a tablespoon of Mylanta
• Yoga breathing
• lf ice water brings it on, ice water sometimes reverts it!
• Drink plenty of water all day
• Blowing into a straw lowers the pulse rate, but does not stop the A-Fib
• Don’t Panic – Have a “This Too Shall Pass” attitude
• Walk around, but don’t exercise since my pulse is too high already

• Take 200 mg of magnesium 3X a day 

• Take a B complex vitamin every day

Doing her detective work helped her make a treatment choice:

…I wanted to get this procedure over quickly. I wanted to start feeling like a normal human being again! So, I trusted my local cardiologist’s choice and had the [ablation] procedure.”

Pat’s diary of her A-Fib triggers is not unusual, especially for people with Vagal A-Fib (though not everyone will be affected by the same triggers).

But the symptoms she describes as predicting or forewarning her A-Fib attack are new and very insightful. (Thanks for sharing, Pat.) Her list of things that helped her get through A-Fib episodes may also be helpful to you.

Be a Sleuth: Keep an Episode Diary

Take your A-Fib binder to your appointments

Share your log with your doctors

You, too, may be able to predict when you’re going to have an A-Fib attack. Start by keeping a log or diary of your A-Fib episodes for three or six months. When an episode occurs, note the day & time, duration and what you were doing, eating or drinking.

As you collect data, scrutinize your log entries for patterns and specific triggers. This may lead you to lessen or eliminate certain foods or beverages or even activities that appear to trigger your A-Fib. You may want to share your log with your doctor.

Don’t be discouraged if you don’t find a pattern, not every log will be revealing. A-Fib seems to have a mind and schedule of its own that’s often hard to predict.

A-Fib Cured in Record Time

Pat probably has set a record for getting cured of A-Fib in the shortest time. Current guidelines recognize catheter ablation as a first line therapy for treating A-Fib (remember: she couldn’t tolerate the medications). After only eight weeks of being in A-Fib, she had a successful CryoBalloon Ablation. To read Pat’s personal A-Fib story, go to Active 64-Year-Old with Family History of A-Fib Gets a CryoBalloon Ablation Eight Weeks after First A-Fib Attack.

Cloud graphic - Michele Straube, A-Fib-free after 30 years - A=Fib.com

Michele Straube, A-Fib-free after 30 years.

Steve’s Mailbox: Harlan Shares How He Gets Out of A-Fib Within 15 minutes

Harlan Alpern, M.D., Cooperstown, New York, wrote me about his unusual A-Fib trigger and a way he successfully controls his A-Fib attacks:

“I am a 72-year-old retired physician who developed atrial fib (lone and paroxysmal) at age 61. My initial trigger was a strong emotional stress event.

Although I have the common triggers for A-Fib including alcohol, coffee, and lying on my left side, the principal trigger for me for A-Fib is emotional stress (and negative emotions especially since I have given up alcohol and caffeine.). This can come from something as simple as watching an emotional or scary movie or television show. I had such an episode this evening which prompted my email to you.”

An Unusual A-Fib Episode Treatment

Xanax, generic name: alprazolam

Dr. Alpern went on to describe an A-Fib episode treatment that works quickly for him. Maybe it will work for you, too.

“I have found a therapy that gets me out of A-Fib within 15 minutes. I take a 1 mg tablet of Xanax and lie on my back in the dark. I occasionally check my heart with my stethoscope. Within 15 minutes I am back into sinus rhythm.

My current cardiologist told me he was not aware of Xanax being a therapy to affect cardio version from A-Fib into sinus rhythm, however my internist kindly provides me a prescription for the Xanax. (I have a New York state medical license but dropped my DEA license after I retired in 2007 so that I cannot order it for myself.)”

I read Dr. Alpern’s email with interest and wrote back to him:

Thank you for sharing what gets you out of an A-Fib attack. I have one similar story about Xanax (a minor tranquilizer). An A-Fib.com reader, Sally, wrote me that her A-Fib comes on at night and is very severe, preventing her from sleeping. “I get up and take Xanax 0.5 mg, and within 15 minutes or so, the A-Fib stops. And I can go to sleep.”

Conquering Your A-Fib Episodes

Share what’s working-email me.

Xanax and Beta-Blockers: Xanax (alprazolam), though primarily used for the treatment of anxiety disorders, appears to have beta-blocker properties. Beta-blockers are typically prescribed to treat high blood pressure and heart problems, and they are prescribed off-label for anxiety. Xanax is a different kind of drug, a benzodiazepine, that is a type of tranquilizer.

But be advised it’s recommended to not take Xanax on a regular basis for more than 2-3 weeks because of the danger of addiction.

Using Xanax for Your A-Fib? Anyone else using Xanax to help with their A-Fib attacks? To tell me about it, just email me.

Scary Movie A-Fib Trigger: I have never heard of a simple emotional stress such as a scary movie triggering an A-Fib episode. Does anyone else have a similar trigger? Email me and share your experience.

Always aim for a cure! As we continue our correspondence, I’ll encourage Dr. Alpern to seek his A-Fib cure.

Eleven years of living in A-Fib is a long time. I’ll urge him to talk with his electrophysiologist about a catheter ablation. (I had mine 20 years ago and am still A-Fib free. I’m age 77 and very active.)

‘Daddy Needs His Life Back’ and Other A-Fib Stories of Hope and Courage


“My life is back. I no longer live in the A-Fib shadow and no longer take the drugs. all is now quiet. I no longer have to be content with less…Life is good.”

Robert Dell, A-Fib free since 2002.


Robert shares his story:

“I was the master scenic artist for the ABC-TV soap opera “One Life To Live” in New York City… Like many of you, I  was also athletic and also lived with daily stress, but I did not know what A-Fib was until I was 47… 

Illness was not new to me as I had been spitting up blood from a lung condition called bronchiectasis coupled with chronic bronchitis for over fifteen years. 

Specialists informed me that I had to live with it, although I might drown in my own blood while asleep if the rare chance of sudden vein rupture occurred. This made me somewhat reluctant to use Coumadin or aspirin….” 

Personal A-Fib stories at A-Fib.com

Over 90 personal stories

Continuing reading Robert’s A-Fib story: “Daddy is always tired.” Daddy needed his life back.

Over 90 Personal Stories of Hope and Courage: Many A-Fib.com readers have shared their personal experiences with A-Fib (starting with Steve Ryan’s story). Told in the first-person, each author tells their story to offer you hope, to encourage you and to bolster your determination to seek a life free of A-Fib. Learn more at: Personal A-Fib Stories of Hope.

Seeking Support: She Emailed Me After Her MD Said “It’s All In Your Mind”

I was reminded recently about an email I received from a woman in England. She described her horrendous A-Fib symptoms—palpitations, extreme fluttering, breathlessness and “absolute extreme fatigue.” 

While her symptoms were troubling, the next part of her email really shocked me!

Her doctor said her breathlessness and exhaustion had nothing to do with her A-Fib. That these symptoms were all in her head. That she was exaggerating.

As an A-Fib community we think we’ve come a long way in our understanding of Atrial Fibrillation and how to treat it. Many of us have—but not everyone.

And what’s most surprising about this story is that her doctor was a woman! (It’s usually males who tell females that’s its all in their mind.) Go figure!?

A-Fib doctor with stethoscope

“It’s All In Your Mind” her MD said.

Though the author of the email probably knew this already, I wrote back and explained to her:

”The symptoms you describe usually come along with Atrial Fibrillation (A-Fib). Fluttering, palpitations, feeling like your heart is going to jump out of your chest or that there are mice rolling bowling balls inside your heart―these are feelings most of us have who suffer from A-Fib.
You experience breathlessness and extreme fatigue because your heart isn’t pumping properly. Normally the upper part of your heart (the atria) squeeze blood down into the lower part (the ventricles) which then pump the blood to the rest of your body. But in A-Fib the upper part of your heart doesn’t squeeze down but instead quivers, vibrates, fibrillates. You lose 15%-30% of your normal pumping volume.
If you could look inside your heart, it would look like a plate of shaking Jell-O. Of course you feel breathlessness, fatigue, dizziness, etc.!”

You are not alone. A-Fib.comPatient’s Want More Than Just the Facts

A-Fib patients need more than just an up-to-date, informed health provider. When people email me, they’re often not just seeking the facts about A-Fib. They’re also seeking support, understanding and empathy.

They need to know that they’re not alone in trying to deal with A-Fib.

Our A-Fib Support Volunteers

Your health provider many not offer the support you need to cope with your A-Fib.

I often tell them about our A-Fib Support Volunteers who are just an email away. We are blessed to have many generous people who have volunteered to help others get through their A-Fib ordeal. They’re fellow A-Fib patients or former patients who are there to listen and offer their support to others suffering from A-Fib. (Visit our A-Fib Support Volunteers page for more info and list of volunteers from around the world.)

Will You Share This Message?

Won’t you share this message with someone who is also suffering from A-Fib? Reassure them, and let them know they are not alone. (And refer them to our  A-Fib Support Volunteers page for more info.)

A few of our many A-Fib.com Support Volunteers

A few of our many A-Fib.com Support Volunteers

Beat the A-Fib Mental Games: Try an Anxiety Thoughts Log

Up to 40% of patients say their ‘quality of life’ has suffered due to their Atrial Fibrillation. For many that manifests as stress, fear and anxiety. It’s my opinion, electrophysiologists (EPs) generally don’t focus on, or effectively help patients deal with the distress that A-Fib often creates.

In his personal A-Fib story, Anthony Bladon shared his techniques for dealing with the mental stress of his A-Fib. He wrote, “The constant lurking fear that A-Fib may spontaneously return, is insidious. I absolutely needed to develop coping mechanisms.”

Anthony’s Two Anxiety-Busting Techniques

Anthony Blandon photo

Anthony Blandon

First, he used a 17-minute audio relaxation exercise 1 on a daily basis (or more often) for months. He then went on to describe his second technique:

“In addition I developed an “anxiety thoughts log,” making myself write down word-for-word what the anxious thought was, as well as noting the physical event that seemed to trigger it.

By confronting my most extreme fears very explicitly (i.e., ‘Is this a TIA or A-Fib?’ ‘I’m afraid of a stroke, I might die or be disabled.’ I can’t contemplate a third ablation!’), it became easier to re-state and contextualize them in a more reasonable frame of mind, thereby reducing my anxiety.

And lastly, he offer this advise:

If fears of A-Fib prey on your mind, I encourage you to seek out the help of a professional psychologist, as I did. After a few sessions of consultation, and with the continued use of tools like these, I was fully able to cope.”

To read all of Anthony Bladon’s A-Fib story, go to: Two CryoAblations, Difficult Recovery Period, Dealing with the Fear that A-Fib May Return.

Coping with Fear and Anxiety; Overview of Atrial Fibrillation

Coping ideas

Beat the Mental Stress of A-Fib

Fight your fears! Ambush your anxiety! Seek your freedom from anxiety and improve the quality of your life.

You may also want to read my article, Seven Ways to Cope with the Fear and Anxiety of Atrial Fibrillation.

A-Fib may be in your heart—
But it doesn’t have to be in your head. 

Footnote Citations    (↵ returns to text)

  1. Still available: You can listen to the free 17 minute audio relaxation exercise on the Dr. Dean Given website (or download the free mp3) at http://drdeangiven.com/?page_id=76.

Lessons Learned Poster: A-Fib Patients’ Best Advice Top 10 List

Over the past few months we have written posts about each item on the ‘A-Fib Patients’ Best Advice Top Ten List’. This list is reprinted from Chapter 12 of Steve’s book, Beat Your A-Fib: The Essential Guide to Finding Your Cure.

The ‘Top 10 List’ is a consensus of valuable advice from fellow patients who are now free from the burden of Atrial Fibrillation.

To read individual posts in this series, just click on the the following links:

#1: Find the Best, Choose a Specialist
#2: Should you Dump Your Doctor?
#3: Don’t Believe Everything You’re Told About A-Fib
#4: Don’t Just Manage Your A-Fib with Drugs. Seek your Cure.
#5: Get Treatment Sooner Rather Than Later
#6: Take an Aggressive Approach to Treatment
#7: Persevere—Multiple Treatments May be Needed
#8: Acknowledge the Stress and Anxiety—Seek Emotional Support
#9: Learn All Your Options Before Making Treatments Choices
#10: Strive to be Your Own Healthcare Champion


From Chapter 12 of Beat Your A-Fib: The Essential Guide to Finding Your Cure, by Steve S. Ryan, PhD.

After Several Years of Unnecessary Suffering: How Warren Found his A-Fib Cure


“I experienced several years of unnecessary suffering by accepting an opinion of one specialist [cardiologist] who said I would have to live with my A-Fib.

Don’t make the same mistake…research [your] treatment options.”

Warren Welsh, A-Fib free after changing cardiologists


In his personal A-Fib story, Warren continued: “I believe that unless there are special circumstances that might preclude ablation, any advice on treatment that is not directed towards a possible cure should be questioned.”

Continuing reading Warren’s A-Fib story (#34), “A-Fib Free After Two Ablations Down Under.”

Browse from Over 90 Personal A-Fib Stories of Hope and Courage

Many A-Fib.com readers have shared their A-Fib personal experiences (starting with Steve Ryan’s story). Told in the first-person, symptoms will vary, and treatments choices run the full gamut. Some stories span years, even decades.

Each author tells their story to offer you hope, to encourage you and to bolster your determination to seek a life free of A-Fib. Learn more at Personal A-Fib Stories of Hope.

Newest Member of Our A-Fib Support Volunteers Was Diagnosed at Age 18

I’m pleased to welcome Warren Darakanada from Los Angeles, CA to our group of A-Fib Support Volunteers. At age 23, he’s one of our youngest volunteers. He hopes to be a resource for those patients closer to his age.

His cardiac health story started about 10 years ago. At age 13, a severe acne breakout landed him in the doctor’s office. While checking his vitals, a problem was found with his blood pressure (and an elevated cholesterol level). Warren shares:

Warren D.

“While the diastolic pressure was normal, the systolic was above 140 mmHg. Without a doubt, I needed to see a cardiologist. I went through a series of tests to rule out causes of secondary hypertension. Luckily or unluckily, nothing was found.
Over the next years, I had several EKGs, but it was not until a routine cardiologist visit when I was 18 that I was diagnosed with atrial fibrillation. I think I had A-Fib for some time prior to my diagnosis, but had no idea my heart beat was irregular. I was in shock! I didn’t know what to think or feel.
I was put on a beta-blocker and warfarin. Given my young age and the perpetual nature of atrial fibrillation, I knew I was headed toward a cardiac ablation.
Suffers Most from Mental and Psychological Effects: While I had few A-Fib symptoms, what I found hard to endure and most debilitating was the mental and psychological effects. I would ask myself:
‘Why is this happening to me and not anybody else?
Why can’t I go back to college and enjoy my freshman year with my friends?
Given all these circumstances, is my life worth living?’
These questions may sound stupid to a mature person in good mental condition. But that wasn’t me. Remember, I was only 18 years old and just starting college… Continue reading Warren’s story…
One-to-One, our A-Fib Support Volunteers are just an email away at A-Fib.com

Our A-Fib Support Volunteers Offer One-to-One Support

When you need someone who will listen and who understands A-Fib, our A-Fib Support Volunteers are just an email away. These volunteers have gone through a lot while seeking their A-Fib cure. They have been helped along the way and want to return the favor. Learn more.

New A-Fib Story: Small Intestine Bleeding Linked to Coumadin; After 8 Years, CryoBalloon Ablation at Age 76

Larry Stichweh from Lacey, WA, begins his A-Fib story at age 66 in 2008 with a 20 year history of high blood pressure.

“To investigate its possible causes, my doctor sent me to a urologist to look for a kidney stenosis problem. The ultrasound proved negative, but the urologist listened to my heart and noted an irregular beat. He ordered an ECG and after one look at it, he took me to his office, and said he was admitting me to the hospital right then and there. He said I had no “P” wave and was in A-FIB. Thus, began my A-FIB history.

I spent 6 days in the hospital while I was introduced to the arrhythmic drug, Sotalol. After I left the hospital, I had to report to a “Coumadin lab” every few days while they struggled to adjusted the Coumadin dosage to the target INR level.

High Blood Pressure and Intestinal Bleeding

A month later, I was back in the hospital when my blood pressure increased rapidly from my normal systolic of about 130mm to 200mm. Intestinal bleeding was found too, and eventually linked with the Coumadin. When it was discontinued, the intestinal bleeding stopped. Three units of blood brought my hemoglobin up to 11.5. I was put on aspirin instead (it was 2008, before the new NOACs).   

Next 8 Years: Paroxysmal A-Fib Gets Worse

My A-FIB was clearly paroxysmal with episodes lasting between 1 and 2 days with 8 episodes over the next 8 years. When the last A-FIB attack lasted three weeks, it was time to consider an ablation. I was 74. 

By 2016, cryogenic balloon ablations had become readily available in major medical centers in the US”…continue reading Larry’s A-Fib story.

HAVE A STORY TO SHARE?

How about you!? Do you have a personal A-Fib experience to share with other patients? It can be your own story or perhaps the story of your spouse, parent or sibling. Just tell the story from your point-of-view. If you are interesting in offering your insights and ‘lessons learned’, read how to write and submit your A-Fib story!

At Age 13, Treatment for Acne Reveals Need for a Cardiologist! A-Fib Hits Early

Warren D.

By Warren Darakanada, Los Angeles, CA, August 2017

“As I write about my A-Fib, I am 23 and just starting my adult life as a financial and economic consultant. But my cardiac story actually starts about ten years ago.

At age 13, I got a severe acne breakout that brought me to the doctor’s office. While waiting to see the doctor, a nurse decided to take my vitals and blood pressure. While the diastolic pressure was normal, the systolic was above 140 mmHg. Without a doubt, I needed to see a cardiologist.

Further investigation revealed that I also had an elevated cholesterol level. Luckily, my blood glucose level was normal. I went through a series of tests to rule out causes of secondary hypertension. Luckily or unluckily, nothing was found.

Since I was a low-risk patient who could benefit from lifestyle modification, and given my age, I was not prescribed any medication or procedure.

At Age 18, A Shock to be Diagnosed with A-Fib!

Over the next years, I had several EKGs, but it was not until a routine cardiologist visit when I was 18 that I was diagnosed with atrial fibrillation. I think I had A-Fib for some time prior to my diagnosis, but had no idea my heart beat was irregular.

I was 18, and in shock! I didn’t know what to do. I didn’t know what to think or feel.

I was in shock! I didn’t know what to do. I didn’t know what to think or feel. The attending cardiologist called in medical residents and fellows to show them that “this is what atrial fibrillation sounds like” through the stethoscope.

Referred to an electrophysiologist, I was put on a beta-blocker and warfarin. Given my young age and the perpetual nature of atrial fibrillation, I knew I was headed toward a cardiac ablation.

[For someone as young as Warren, it’s unthinkable to leave him taking dangerous A-Fib drugs for a lifetime (60 or 70 years). In addition, a catheter ablation was his most reasonable option with a high success rate in young people like Warren.]

Suffers Most from Mental and Psychological Effects

While I had few A-Fib symptoms, what I found hard to endure and most debilitating was the mental and psychological effects. I would ask myself:

‘Why is this happening to me and not anybody else?
Why can’t I go back to college and enjoy my freshman year with my friends?
Given all these circumstances, is my life worth living?’

These questions may sound stupid to a mature person in good mental condition. But that wasn’t me. Remember, I was only 18 years old and just starting college, and college students are prone to depression for various reasons. (See Seven Ways to Cope with the Fear and Anxiety of A-Fib)

My solution: Instead of staying home and pondering about these life problems, I decided to keep myself busy with activities, online classes, and occasional meet-ups with friends.

In hindsight, that helped tremendously.

My Catheter Ablation

It was roughly 3 months between my diagnosis and my ablation in March 2013. So, I only “knowingly” lived with A-Fib for a few months before my ablation.

The day of my RF catheter ablation came just as any other day. I had been admitted the night before. Except for not eating after 9 pm, I did nothing to prepare myself for it. I think the procedure lasted about 1 1/2 hours. I stayed in the hospital overnight.

As a child, I had had many surgeries, so hospitalization was not a big deal. (To keep this short, I’ll skip my childhood medical history.)

Post Ablation

After the procedure, I was almost always in sinus rhythm. But my atrial fibrillation would come back intermittently. Most episodes were really short with the frequency decreasing over time. [This is common during the three-month ‘blanking period’ following an ablation.]

However, because my heart rate was not well controlled and because of the risks of recurrences, I was put on diltiazem, a calcium channel blocker.

Because of my hypertension and high cholesterol (added risk factors of atrial fibrillation), I am also on Cozaar and a statin.

Now A-Fib-Free 

Since I started diltiazem, I’ve not had an episode…except one time after being under general anesthesia. The cardiologist believes that was a side effect of propofol [used to help you relax before and during general anesthesia for surgery].

It would be great if I could live without my various medications, but taking them, honestly, is not a big deal.

Lessons Learned

Emotionally Stronger and Healthier: I feel the entire A-Fib/ablation process has made me an emotionally stronger person. I also started to work out and take care of my own health more. (But that’s also a function of becoming more mature with age rather than the ablation alone.)

In the process, I have learned to enjoy and appreciate life in the way most people my age could never do.

I have learned to enjoy and appreciate life in ways others my age could never do.

Atrial Fibrillation―It Comes in a Package: By that I mean, cardiovascular disorders often come “packaged” together, often congenitally and genetically.

I’m trying to suggest that people with A-Fib/arrhythmia often have other cardiovascular risk factors. For instance, I have hypertension and high cholesterol and a family history thereof.

Moreover, cardiovascular diseases are also risk factors of diseases for other organs, such as the kidneys and liver.

My advice for younger patients diagnosed with Atrial Fibrillation:

Exercise: I would suggest that young adults work out more, at least 3 times a week for one hour each time.

Seek Help for Mental Health: For those suffering from A-Fib, make sure that you have a good attitude. Seek counseling if you have mental conditions from A-Fib.

Evaluate & Reduce Other Risk Factors:  Young A-Fib patients should also see general cardiologists to evaluate A-Fib related risk factors.

When young people get A-Fib, they could be living with it for possibly more than 50 years. Take actions to reduce your risk factors and take care of your body.

Positive Attitude Trumps All: I’m dealing with my ‘package’ of conditions. While getting rid of my ‘package’ once and for all might not be an option for me, I can choose to live with a positive attitude.

I welcome your emails.”

Warren Darakananda
warrenddara(at)gmail.com

Editor’s Comments:
We are most grateful to Warren for his frank discussion of how A-Fib affected him psychologically and emotionally. He was only 18 years old when diagnosed with A-Fib and just starting college. He’s learned the hard way how to develop a “positive attitude.”
Psychological Distress:  For Warren, the psychological effects were hard to endure, much more so than his physical symptoms.
Recent research indicates that “psychological distress” worsens A-Fib symptoms’ severity. For many patients the anxiety, fear, worry and depression can become debilitating.
To learn how to deal with the psychological aspect, see my article, Seven Ways to Cope with the Fear and Anxiety of A-Fib.
A-Fib Support Volunteers: I’m pleased to welcome Warren to our group of A-Fib Support Volunteers. He hopes to be a resource for those patients closer to his age. (He’s one of our youngest volunteers.)
We are blessed to have many generous people who have volunteered to help others get through their A-Fib ordeal. Most A-Fib Support Volunteers are not medical personnel. They come from widely different backgrounds. But you can be sure they care about you and understand what you are going through. Visit our A-Fib Support Volunteers page to learn more.

Learn about sharing your A-Fib story

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If you find any errors on this page, email us. Y Last updated: Thursday, March 15, 2018

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