ABOUT 'BEAT YOUR A-FIB'...


"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

"Your book [Beat Your A-Fib] is the quintessential most important guide not only for the individual experiencing atrial fibrillation and his family, but also for primary physicians, and cardiologists."

Jane-Alexandra Krehbiel, nurse, blogger and author "Rational Preparedness: A Primer to Preparedness"



ABOUT A-FIB.COM...


"Steve Ryan's summaries of the Boston A-Fib Symposium are terrific. Steve has the ability to synthesize and communicate accurately in clear and simple terms the essence of complex subjects. This is an exceptional skill and a great service to patients with atrial fibrillation."

Dr. Jeremy Ruskin of Mass. General Hospital and Harvard Medical School

"I love your [A-fib.com] website, Patti and Steve! An excellent resource for anybody seeking credible science on atrial fibrillation plus compelling real-life stories from others living with A-Fib. Congratulations…"

Carolyn Thomas, blogger and heart attack survivor; MyHeartSisters.org

"Steve, your website was so helpful. Thank you! After two ablations I am now A-fib free. You are a great help to a lot of people, keep up the good work."

Terry Traver, former A-Fib patient

"If you want to do some research on AF go to A-Fib.com by Steve Ryan, this site was a big help to me, and helped me be free of AF."

Roy Salmon Patient, A-Fib Free; pacemakerclub.com, Sept. 2013


A-Fib Patient Stories

In A-Fib for 15 Years, Eventually Unable to Work

Terry Traver' s story at A-Fib.com

Terry Traver’ s story

We’ve posted a new personal experience story. Terry Traver of Thousand Oaks, CA, shares his 15-year battle with A-Fib.

“For over 15 years I suffered with A-Fib. It was not so bad [at first]. I stopped using caffeine and chocolate and cut back on my [alcohol] drinking.

Every three months or so I would have an episode that would last about 15 hours and then I would be fine. Meds never really helped in my case.

A-Fib Progresses to Severe and Incapacitates

In 2011, my A-Fib became severe to the point where I was almost completely incapacitated [Persistent Atrial Fibrillation]. I was not even able to work. …Continue reading Terry’s story…

Top 10 List #1 Find the best EP your can afford - A-Fib.com

In A-Fib for 15 Years, Eventually is Incapacitated, Unable to Work

Terry Traver' s story at A-Fib.com

Terry Traver’ s story

By Terry Traver, Thousand Oaks, CA, September 2016

I’m a sixty-five year-old male and live in southern California. I am writing this because, as great as Steve’s site [A-Fib.com] is, there aren’t many stories from the west coast.

For over 15 years I suffered with A-Fib. It was not so bad. I stopped using caffeine and chocolate and cut back on my [alcohol] drinking.

Every three months or so I would have an episode that would last about 15 hours and then I would be fine.

Meds never really helped in my case.

A-Fib Progresses to the Point Where I Can’t Work

In 2011, my A-Fib became severe to the point where I was almost completely incapacitated [Persistent Atrial Fibrillation]. I was not even able to work.

Luckily, through a friend I was put in touch with Dr. Anil K. Bhandari, a clinical Electrophysiologist (EP)] at Los Angeles Cardiology Associates in downtown Los Angeles.

Ablation and a Touch-up at Good Samaritan Hospital in Los Angeles

In March 2012, I went in to Good Samaritan Hospital for a catheter ablation (wonderful Hospital and staff). I knew I was a difficult case, so I was not surprised when I had to return in July 2012 for a second touch up ablation (I think Dr. Bhandari was more disappointed than I was).

I knew I was a difficult case, so I was not surprised when I had to return in July 2012 for a second touch up ablation.

Afterwards, no sign of A-Fib. I felt great! At my 30 day return visit and I was told to use up the remainder of my meds and then discontinue them.

A-Fib Free for Five Years

I’ve been A-Fib free for five years. I still doesn’t drink coffee but enjoy chocolate and an occasional cocktail without worry.

Dr. Bhandari and the ablation was the best thing I could have done. I would like to add that the procedure is very easy. I was home the next day. I had no pain and had a short recovery time.

I have nothing but great things to say about my experience with Dr. Bhandari, his staff and Good Sam. Hospital, I live 40 miles north of L.A. and the drive was worth it.

Lessons Learned

Lessons Learned graphic with hands 400 pix sq at 300 resWhat I wish I knew then or did differently:

• I would have had the ablation much sooner. No G.P. [family doctor] ever mentioned ablation as an option. I only heard about it from a friend!
• I had never heard of an electrophysiologist (EP), and wish I had seen one sooner.
• I would learn more about what my insurance covered and what expenses I could negotiate.

I also want to thank Steve Ryan for this wonderful web site. Good luck

P.S. For the guys: For bladder control during the catheter ablation, instead of a urinary catheter, Dr. Bhandari uses a condom. No insertion. Just sayin’.

Terry Traver
terrytraver@gmail.com

Editorial comments:
I’m still amazed when an A-Fib patient tells me his family doctor didn’t refer them to a cardiologist, and more importantly, to an Electrophysiologist.
Atrial Fibrillation is a problem with the electrical function of your heart. Most cardiologists deal with the pumping functions of the heart (think ‘plumber’). It’s important for A-Fib patients to see a cardiac Electrophysiologist (EP)—a cardiologist who specializes in the electrical activity of the heart (think electrician) and in the diagnosis and treatment of heart rhythm disorders.
Terry writes that his GP did not refer him to an EP. Thank goodness a friend stepped in to help him.
It’s so important for patients to educate themselves to receive the best treatment. To learn how to find the right doctor, go to our page: Finding the Right Doctor for You and Your Treatment Goals.
The longer you wait, the worse A-Fib tends to get. Look at Terry’s story. His disease progressed to Persistent Atrial Fibrillation and was incapacitating.

A-Fib is a Progressive Disease—Seek your Cure ASAP!

Note: Dr. Bhandari is still with Los Angeles Cardiology Associates (213-977-0419), also now works at Cedars Sinai in Los Angeles.

Top 10 List #1 Find the best EP your can afford - A-Fib.com

New Personal Story: A-Fib, Prayer and Healing

We corresponded recently with Jon who’s been A-Fib free since 2011. He agreed to share his story with our A-Fib.com readers:

I struggled with A-Fib for almost eight months in the year of 2011.  It began in January, and I had episodes of it throughout the year. My episodes weren’t too bad—as in I never had any side effects of the A-Fib like fainting or clotting.

My A-Fib Story at A-Fib.com

Jon’s story of healing

The only real thing I had during the episodes was an irregular heartbeat and a fast heart rate. Being as young as I am and having a family of my own, it was a lot to have on my shoulders.

I wanted the A-Fib gone, and the medication I was taking did not make it go away.

The Power of Prayer

I knew of another way that the A-Fib could go away—by God supernaturally healing me.  Well, in August of 2011 I asked the pastors of my church to pray for me that God would heal me.  After the Sunday service...”.Continue reading Jon’s story…

My A-Fib Story: The Healing Power of Prayer

Jon Murray - My A-Fib Story at A-Fib.com

Jon Murray

By Jon, August 2016

I have been cured of A-Fib since 2011 and simply wanted to share my testimony with you and your readers at A-Fib.com.

A-Fib Medications Didn’t Work

I struggled with A-Fib for almost eight months in the year of 2011. It began in January, and I had episodes of it throughout the year. My episodes weren’t too bad—as in I never had any side effects of the A-Fib like fainting or clotting. The only real thing I had during the episodes was an irregular heartbeat and a fast heart rate.

Being as young as I am and having a family of my own, it was a lot to have on my shoulders.

I wanted the A-Fib gone, and the medication I was taking did not make it go away.

My Pastors Prayed for My Healing

I knew of another way that the A-Fib could go away—by God supernaturally healing me.  Well, in August of 2011 I asked the pastors of my church to pray for me that God would heal me.  After the Sunday service they prayed for me. And a week after that my A-Fib was gone. I was healed by prayer.

I haven’t had an episode or problem since 2011!  It’s a miracle!

Helped by Great Physicians Too

I am not writing this to refute your book, Steve, nor am I saying that the medical field should not be called upon for help in the time of need.

If it wasn’t for the great physicians here where I live on the East Coast, I would be in bad shape—who knows what would have happened if they didn’t break those episodes I had. And, I’ve read testimonies of others where medicine helped them with, if not cured, their A-Fib episodes.

I simply wanted to share with you my experience – since it included A-Fib.  Who knows—maybe God can bless you through my e-mail.

Jon
ayatingl@gmail.com

Editor’s Comments
A-Fib.com's Positive Thought/Prayer group

A-Fib.com’s Positive Thought/Prayer group

At A-Fib.com one of our volunteer groups is a Positive Thought/Prayer group comprised of wonderful people worldwide. If you would like their support, especially at the time of your ablation or surgery, please email us your request. It’s comforting to know that others who’ve had A-Fib care about you and wish you well.

How to Send Your Request: Send your request to our coordinator, Barbara. Write to barbara: babareeba(at)aol.com (substitute an “@” for the “(at)”).

Join our Group: We invite you to join our ‘A-Fib Positive Thought/Prayer’ group. Learn more on our page: The Healing Power of Hope, Belief and Expectations. All are welcome.

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Return to Patient A-Fib Stories

Related Reading:
Anatomy of Hope book cover 350 pix wide at 96 resThe Anatomy of Hope: How People Prevail in the Face of Illness

by Jerome E. Groopman

There’s more to hope than we thought. Hope triggers biochemical changes.

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 Patti’s review on Amazon.com.)

If you find any errors on this page, email us. Last updated: Thursday, August 18, 2016

New Story: Cardiologists Offer Little A-Fib Advice to Fellow Doctor

John Bennett, MD, practices emergency medicine in Miami, Florida. Dr. Bennett is known for his series of Google Hangouts live videos featuring experts in a variety of medical fields. To learn more, visit his website, Internetmedicine.com, “Where the Internet Meet Medicine.” His Atrial Fibrillation started at age 57.

John Bennett MD personal A-Fib story at A-Fib.com

John Bennett MD

“As a physician, I had the usual knowledge most physicians have about A Fib—which is not much. Especially the care of chronic Atrial Fibrillation. Like most people, I trusted my cardiologist to do the best thing for me.

First Cardiologist No Options But Drugs—I Hated Coumadin

My first cardiologist did the usual workup, and prescribed Coumadin. I hated that medicine. Made me feel tired, no energy, but I accepted it.

Finally, I got tired of being tired, so I started to do some online research.

I found out that you could elect to be cardioverted, which my first cardiologist did not even mention (since, of course, he would lose me as a patient, if I returned to normal sinus rhythm).

Electrocardioversion Works for 7 Years

I then went straight to an Electrophysiologist (EP), who converted me, and it lasted 7 years. Then last year…” Continue reading Dr. John Bennett’s story->

Stubborn A-Fib Returns Again and From Unusual Areas

We first posted Marilyn Shook’s personal A-Fib story, “Pill-In-the-Pocket” for Five Years, then Catheter Ablation for a Cure (#25) in 2008. She then sent us updates in 2014, 2015 and now her latest update after a third ablation in late April 2016. Marilyn’s A-Fib appears to find new and unusual places to originate from.

Marilyn Shook - A-Fib story at A-Fib.com

Marilyn S.

In her lasted installment, Marilyn writes:

“It’s been a few weeks since my third PVA [Pulmonary Vein Ablation] and I am doing  well.

Just to jolt your memory―I had my first PVA in 2007 and did well for 7 years. But my A-Fib returned in 2014 and was documented by a tiny Medtronic Reveal LINQ cardiac monitor implant. A second PVA followed in October of 2014.

I was A-Fib free until February 2016 when A-Fib/Flutter returned. I opted for my third PVA, which was performed in April 2016 by Dr. David Haines at Beaumont Hospital.

Marilyn Shook is also an A-Fib Support Volunteer who lives near Detroit, MI.

My Third Ablation and Post-Ablation Complication

Under general anesthesia, my PVA was extensive work but completed in about 4 hours. I was in sinus rhythm before and after the procedure. After my ablation, I was awake, alert and responsive and then suddenly became unresponsive, with thready pulse, blood pressure plummeted.

I was having a post PVA complication―a cardiac tamponade―an emergency situation!…”

Continue reading about Marilyn’s third ablation and her medical emergency->.

Cardiologists Offer Little A-Fib Advice, Even to a Fellow Doctor!

John Bennett MD personal A-Fib story at A-Fib.com

John Bennett MD

By John Bennett, MD, July 2016

John Bennett, MD, practices emergency medicine in Miami, Florida. Dr. Bennett is known for his series of Google Hangouts live videos featuring experts in a variety of medical fields. To learn more, visit his website, Internetmedicine.com, “Where the Internet Meet Medicine.”

I had the good fortune to run into Steve Ryan, find his website, and get his book. Ultimately I got fine care and returned to having a healthy heart. My story being at age 57 when I suddenly went into Atrial Fibrillation.

I Trusted My Cardiologist

As a physician, I had the usual knowledge most physicians have about A Fib—which is not much, especially the care of chronic Atrial Fibrillation. Like most people, I trusted my cardiologist to do the best thing for me.

My first cardiologist did not even mention cardioversion to get me back in sinus rhythm.

First Cardiologist No Options But Drugs—I Hated Coumadin

My first cardiologist did the usual workup, and prescribed Coumadin. I hated that medicine. Made me feel tired, no energy, but I accepted it.

Finally, I got tired of being tired, so I started to do some online research.

I found out that you could elect to be cardioverted, which my first cardiologist did not even mention (since, of course, he would lose me as a patient, if I returned to normal sinus rhythm).

Electrocardioversion Works for 7 Years

Well, he did. I then went straight to an Electrophysiologist (EP), who converted me, and it lasted 7 years. I was cardioverted again but this time it only lasted 5 months.

Still, no talk of catheter ablation. I had to chase my doctor down the hall to say, “What’s the plan?”

Research and reading  ‘Beat Your A-Fib’, I found I might be a candidate for catheter ablation.

Ablation and A-Fib Free—“Beat Your A-Fib” Book

Next, I went back to the internet where I ran across Steve’s book, ‘Beat Your A-Fib’ and found I might be a candidate for catheter ablation.

July 2015 I had an ablation by Dr. Todd Florin at Mount Sinai Medical Center in Miami Beach (highly recommended, good listener, super team) and returned to normal sinus rhythm.  It’s been one year and I am still in normal sinus rhythm. If you’ve had A-Fib, I don’t have to tell you the difference between A-Fib and sinus rhythm.

I am truly appreciative about Steve’s work [A-Fib.com] and his book. I feel like a real human being again, with normal energy levels.

Lessons Learned

Lessons Learned graphic at A-Fib.com

Take an active role in your care.

Like Steve says, catheter ablation may not be the answer for every patient with A Fib.

But you need to be aware of it! Read. Be aggressive with your cardiologist. Ask about catheter ablation [and other options]. Take an active role in the care of your pump!

Steve’s book, “Beat Your A-Fib,” motivated me to get active and investigate my treatment options.

Isn’t it sad that TWO of my Cardiologists did not care enough to even mention ablation to me? And I am a friggin’ doctor―and they treated me that way!

John Bennet, MD
Miami, Florida

Editor’s comments
Electrocardioversion best for recent-onset A-Fib: Dr. Bennett was very fortunate to have a cardioversion keep him in sinus rhythm for seven years.
Unfortunately for most patients, a cardioversion seldom lasts that long. It works best in cases of recent onset A-Fib. It’s a very safe procedure and is certainly worth a try, but cardioversion is seldom a permanent cure for A-Fib. Don’t be surprised if you’re back in A-Fib within a week to a month.

Amazing! Dr. Bennett’s fellow physicians didn’t tell him about options like electrocardioversion and catheter ablation.

You can’t always trust cardiologists (or the media): What’s most amazing about Dr. Bennett’s story is that his fellow physicians and colleagues (whom he trusted) didn’t tell him about options like Electrocardioversion and catheter ablation.
Today’s media and web sites talk about “Living with A-Fib”.  But living in A-Fib is detrimental to your long-term health.
In contrast, the message at A-Fib.com is: You don’t have to live in A-Fib. Seek your Cure.

Top 10 List #10 Be your own best patient advocate 600 x 530 pix at 300 res

 

2016 Cost of Ablation by Bordeaux Group (It’s Less Than You Might Think)

David Neth wrote us he’s feeling fine after his recent A-Fib catheter ablation for persistent A-Fib by the French Bordeaux Group [Drs. Michel Haïssaguerre, Pierre Jais and and Meleze Hocini at the Hôpital Cardiologique du Haut Lévêque-(CHU) de Bordeaux]. The Bordeaux Group has the most international experience in ablating persistent A-Fib and uses the ECGI/ECVUE mapping and ablation system. For example, they do 2 persistent A-Fib ablations per day.

David Neth Hopitaux de Bordeaux sign

David Neth at Hopitaux de Bordeaux

We had just updated our article on the Bordeaux Group, and I was curious how the cost compared to an ablation in the US. Here’s what David shared:

Total hospital payment for his 5-day stay was €16,598 (US exchange rate=$ 19,251)

Payment covered: the procedure, operating room charges, all medication and testing, doctors and hospital charges and a private room (including a second bed and 2 extra meals per day for spouse). There were no other charges.

Of course, David had to pay for personal transportation and local living costs.

Putting the Costs in Perspective

In recent years, David had two unsuccessful ablations for his Atrial Fibrillation at the University of Washington Hospital that each cost close to $75,000. His healthcare insurance negotiated the rate down to $48,000 (of which he had to pay $3,500 each time – his annual deductible).

Before booking his procedure in Bordeaux, his Medicare Advantage Supplemental insurance company incorrectly assured him his coverage included “out of country” medical treatment. Sadly, it turned out that this only applied for “emergency services” and their call center had misinformed him.

David shared his thoughts about his out-of-pocket costs:

“I don’t have a large savings and this [Bordeaux ablation] depleted much of it (since I also paid airfare and several nights hotel costs for 3 of us), but I’d have zero hesitancy to do it again if it were necessary. 

At $19,251 US, I feel that’s a small price to pay for cutting edge, successful service!”

David Neth being prepped with Cardio Insight vest with 252 leads; Inset: Front of Cardio vest

[Note: In contrast, my ablation in Bordeaux was covered by my health insurance the same as if the procedure had been in the US.]

To contact the Bordeaux Group, read my updated article on the Bordeaux Group.

The Bordeaux Group: Best in the World for A-Fib Patients!

Think of it—$20,000 for treatment by the best EPs in the world.

Dr. Michel Häissaguerre and his colleagues invented catheter ablation for A-Fib (Pulmonary Vein Isolation). Today their cutting edge research includes using CardioInsight’s noninvasive Electrocardiographic Imaging (ECGI) to map and ablate persistent A-Fib. (ECGI, available only in Europe at this time, will probably revolutionize how ablations are mapped and performed.) Currently at Bordeaux, ECGI is not used for cases of paroxysmal (occasional) A-Fib.

FYI: Drs. Michel Haïssaguerre and Pierre Jais cured my A-Fib in 1998. I was their first U.S. patient. Click to read my story.

My Stubborn A-Fib Returns: A Third Ablation with Post-PVA Complication

A-Fib Patient Story #86

My Stubborn A-Fib Returns: A Third Ablation with Post-PVA Complication

Marilyn Shook - A-Fib story at A-Fib.com

Marilyn S.

By Marilyn Shook, July 2016

Note: We first posted Marilyn Shook’s personal A-Fib story, Pill-In-the-Pocket” for Five Years, then Catheter Ablation for a Cure (#25) in 2008. She then sent us updates in 2014, 2015 and earlier in 2016. Her latest installment is about a third ablation in late April 2016.

It’s been a few weeks since my third PVA [Pulmonary Vein Ablation] and I am doing well.

Just to jolt your memory―I had my first PVA in 2007 and did well for 7 years. My A-Fib returned in 2014. To document any arrhythmia, I had a tiny Medtronic Reveal LINQ cardiac monitor implanted. The captured data confirmed my A-Fib, and I had a second PVA in October of 2014.

Marilyn Shook is also one of our many A-Fib Support Volunteers and lives near Detroit, MI.

I was A-Fib free until February 2016 when A-Fib/Flutter returned. I opted for my third PVA, which was performed in April 2016 by Dr. David Haines at Beaumont Hospital [Michigan].

Post-Ablation Complication: Cardiac Tamponade

Under general anesthesia, my PVA was extensive work but completed in about 4 hours. I was in sinus rhythm before and after the procedure. After my ablation, I was awake, alert and responsive and then suddenly became unresponsive, with thready pulse, blood pressure plummeted.

A Cardiac Tamponade is when blood fills the sac around the heart. During a PVA, it’s usually caused by a small hole created by a penetrating ablation burn.

I was having a post PVA complication―a cardiac tamponade―an emergency situation!

A drain was inserted into my pericardium, [the sac around the heart] and one liter of blood removed. I was transfused with 2 units of blood, then transferred to the ICU with the drain in place. Total blood drainage was about 2 liters.

All I remember is seeing Dr. Haines’ face and hearing all sorts of commands. I remember no pain.

Sent Home but Develops Sinus Tachycardia

After 3 days, the tamponade was under control, and I was discharged from the ICU and sent home. A couple of days later, I felt a very rapid, regular heartbeat. It started on a Sunday, and I waited until early Monday morning to contact my cardiologist.

After a couple of days at home, I felt a very rapid, regular heartbeat. My ECG showed I was in sinus tachycardia, a rapid, but regular heartbeat.”

My ECG showed I was in sinus tachycardia [a rapid, but regular heartbeat], and I was sent to the hospital electrophysiology lab. After a TEE (Transesophageal Echocardiogram) and cardioversion as an outpatient, I converted into NSR [Normal Sinus Rhythm].

Back at home, I did better every day, but initially I was so fatigued. Ten years ago, recovery from my first PVA was rapid and easy. Recovery from my second PVA took a little more out of me, but the recovery was easy.  This time, I was much more fatigued, no pain, just fatigue.  Of course, I am 10 years older than when I had my first PVA, and this time there was a major complication.

My Latest Cardo Appointment: No Arrhythmias!

I saw Dr. Haines in late June and he checked the data from my LINQ monitor―I had no arrhythmias. I am not on any cardiac medications. But I remain on Xarelto for another 6 weeks.

He told me extensive work was performed during my PVA. Interesting was the fact that the pulmonary veins were mapped and all was quiet in that area [from previous ablations]. Much work was performed in the left atrium. There was extensive mapping, remapping, re-ablation, observation and provocative testing.

Lessons Learned

Lessons Learned graphic with hands 400 pix sq at 300 res

The O.R. report from my third PVA documents that my A-Fib was not caused by my pulmonary veins but by non-pulmonary vein triggers.  These triggers were identified and isolated.

Research at this time suggests that there are no significant differences in complication rates between first, second, third or fourth ablations.

We must remember that all ablation procedures have a chance of complications. Cardiac tamponade complications occur in less than 1% of catheters ablations. Never did I think it would happen to me.

To learn how choose the right doctor for you and your treatment goals, see Finding the Right Doctor for You.

I survived and I am doing well because I was at a great hospital with a team of physicians and nursing staff ready to identify and correlate my care during a cardiac emergency.  I had a very knowledgeable electrophysiologist, an expert in the field of Pulmonary Vein Ablations, and top-notch anesthesiology at my side.

All these variables matter, so choose your doctor carefully.

Would I have another catheter ablation?  Yes, if I am a candidate, I would.  But, I have confidence that my A-Fib will not return.

Marilyn Shook
E-mail: nmshook(at)sbcglobat.net

Editor’s Comments

Why Did the Tamponade Happen? Of the nearly 100 Personal Experiences we have published on A-Fib.com, Marilyn’s is the first description of a tamponade. Dr. Haines had to perform extensive mapping, ablation and re-ablation in the left atrium. Somehow one of these catheter ablation burns made a small hole in the heart causing blood to drain from the heart into the pericardium sac.
It’s probable she was at increased risk of a tamponade because of the high difficulty level of her ablation which required more extensive burns than an ordinary ablation. Even the most skilled, experienced EPs can have a tamponade occur.
No Lasting Damage from Tamponade: All experienced EPs and their staffs anticipate and prepare for complications. Dr. Haines and his staff were well prepared and handled this tamponade by draining the leaked blood from the pericardium sac while the small hole in the heart healed by itself. Marilyn went home in three days and was fine. There was no lasting damage to her heart.
This is not to discount the dangers of a tamponade. Without attentive care, Marilyn could have suffered severe heart damage and even have died.
Free download: How and Why to Read Your OR Report – a special 12-page report for Atrial Fibrillation patients by Steve S. Ryan PhD.
For You Technical Types: Marilyn’s O.R. Report: Marilyn sent me her O.R. report so I was able to read what Dr. Haines found and what he did.
He found that Marilyn’s Pulmonary Veins (PV) were still completely silent with no A-Fib. He made a linear ablation line in the left ridge (between the two Left Pulmonary Veins) which terminated her A-Flutter into normal sinus rhythm (that’s the best outcome).
But instead of stopping there, Dr. Haines used electrical signals (pacing) and was again able to induce A-Flutter. He discovered mitral annular flutter and made a linear mitral annular ablation line which again terminated the A-Flutter into sinus.
When he paced again, he found high frequency A-Fib signals coming from the Left Atrial Appendage (LAA). He ablated in this region and extended a linear ablation line towards the base of the LAA which terminated her A-Fib. At this point he ended her ablation.
The locations of Marilyn’s A-Fib/Flutter signals are somewhat unusual. It’s troubling that we don’t know why she developed them. What’s encouraging is that a good, experienced EP was still able to make her A-Fib free.
The Bottom Line: The risk of a tamponade shouldn’t scare you away from having a catheter ablation. Look at how efficiently Dr. Haines and his staff handled Marilyn’s tamponade!
Even in this worst case scenario, Marilyn is fine and A-Fib free.
Find the Best EP you Can Afford: Marilyn did her homework when she selected Dr. David Haines as her EP. She was confident in his treatment advice. She continued to rely on him and his staff over the years as her A-Fib poked up its head again in 2014 and 2016.
This is why we always advise you to see a heart rhythm specialist and to carefully choose your electrophysiologist (EP). To learn how, see Finding the Right Doctor for You.

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Return to Patient A-Fib Stories
If you find any errors on this page, email us. Y Last updated: Saturday, July 23, 2016

Patients’ Best Advice #10: Become Your Own Best Patient Advocate

THE TOP 10 LIST #10

Become Your Own Best Patient Advocate.

A-FIB PATIENTS’ BEST ADVICE

From Beat Your A-Fib: The Essential Guide to Finding Your Cure, Chapter 12: Your Journey to a Cure, and personal stories from A-Fib.com. Advice from patients now free from the burden of Atrial Fibrillation:

Joan Schneider at A-Fib.com

Joan S.,

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

“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.” (pp. 119-124)
Michele Straube

Michele S.

Michele Straub, Salt Lake City, Utah, encourages you to be more active in your own treatment plan:

“Do not take ‘this is as good as it gets’ as an answer—do your own research about what’s possible. Take a co-leadership role with your doctor.” (pp. 88-90)

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

John and Marcia Thornton

John & Marcia T.

“The local MDs (about a half dozen different ones), cardiologists, EPs, and other local specialists, all told me stuff like: “Everyone has PVCs” and “PVCs are benign,” and “It is just anxiety,” and “You just need to learn to live with it”. Which was completely WRONG.
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.
I honestly believe that had I not gone to Mayo I would have suffered some major heart event, or possibly death.”

Our A-Fib Support Volunteers: Just an Email Away

A-Fib.com supporters

To become your own best patient advocate, it helps to have someone who has ‘been there’ and is there for you now—someone you can turn to for advice, emotional support, and a sense of hope that you can be cured. Someone who can share their own story or just ‘listen’ to yours.

Our A-Fib Support Volunteers are just an email message away. Note: Not all Support Volunteers are ‘cured’ of their A-Fib, but have found the best outcome for their situation.

Our volunteers are listed by U.S. state and worldwide by geographical region. Learn more at: Our A-Fib Support Volunteers

Make Things Happen:
Become Your Own Best Patient Advocate!

♥ ♥ ♥


‘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)

Coming soon: a .PDF of the
Top 10 List of A-Fib Patients’ Best Advice
Please, share the advice ♥ 

Patients’ Best Advice #9: Learn All Your Treatments Options Before Making Decisions

THE TOP 10 LIST #9

 Educate Yourself on All Treatment Options Before Making Decisions.

A-FIB PATIENTS’ BEST ADVICE

From Beat Your A-Fib: The Essential Guide to Finding Your Cure, Chapter 12: Your Journey to a Cure. Advice from patients now free from the burden of Atrial Fibrillation:

Sheri Weber on A-fib.com

Sheri W.

Sheri Weber, Boyce, Virginia, had to get angry:

“While in the hospital, I questioned my cardio doctor about treatment options other than medication; He told me there were surgical procedures, but they had very low success rates (WRONG!). Anger and determination led me to research my options [right then] on my laptop.”  (pp. 106-109)

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.

Daniel D.

− ‘Just take a little digoxin and you will be fine.’
− ‘You are probably missing some micronutrient. 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.’ ” (pp. 152-162)

Joan Schneider, Ann Arbor, MI, found online information and support:

Joan S.

Joan S.

“Upon questioning [my new EP]…I didn’t have a warm fuzzy feeling. However, I found everything I needed to know (and even what I didn’t want to know) when I came across A-Fib.com, Stopafib.org, and the best support from the A-Fib support group.
It was a true experience of input, input, input!” (pp 119-124)

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

It’s important to educate yourself. At A-Fib.com you can learn about all your treatment options. Check our Treatments section covering diagnostic tests, common mineral deficiencies, drug therapies, cardioversion, catheter ablations and 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.

And finally when you may ask yourself, ‘Which is the best A-Fib treatment option for me?’, read our Q&A section: Decision About Treatment Options.

A-Fib.com; Your unbiased source on current and
emerging treatments for Atrial Fibrillation!


‘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)

Next, look for #10 on the
Top 10 List of A-Fib Patients’ Best Advice
Please, share the advice ♥ 

Patients’ Best Advice #8: Get Emotional Support for the Stress and Anxiety

Top 10 List #8 Get Emotional Support 600 x 530 pix at 300 Rev2

THE TOP 10 LIST #8

Get emotional support for the stress and anxiety
and to keep up your spirits.

A-FIB PATIENTS’ BEST ADVICE

From Beat Your A-Fib: The Essential Guide to Finding Your Cure, Chapter 12: Your Journey to a Cure. Advice from patients (and a spouse) now free from the burden of Atrial Fibrillations:

Jay Teresi

Jay T.

Jay Teresi, Atlanta, GA, USA. cured after having A-Fib for over ten years:

“Of the entire experience, anxiety has been the greatest challenge. Don’t beat yourself up if you deal with this. Be honest with the doctors about it and get help. And help your family to understand as they are your greatest support system.” (pp. 98-100)
Kelley T.

Kelley T.

Kelly Teresi, wife of Jay Teresi, about coping with her husband’s A-Fib:
“This disease is so far beyond what a non-A-Fib person can comprehend—many times I found myself frustrated, not understanding what was going on with Jay’s thoughts and heart.
Jay’s A-Fib and the associated anxiety has left its imprint on our lives. I’m told that couple’s counseling can help when one spouse feels burdened with the patience, understanding and emotional support required on behalf of the other spouse.” (pp. 101-105)
Max Jussila, A-Fib Support Volunteer at A-Fib.com

Max J.

Max Jussila, Shanghai, China, about the emotional impact of his A-Fib:

“I have never been mentally so incapable…even the simplest work-related problems seemed impossible for me to handle, let alone solve. I had become totally obnoxious towards my wife and colleagues.
I was only 52 years old…but mentally I was reduced to a six–year-old child with constant tantrums.” (pp. 92-97)
Joy G.

Joy G.

Joy Gray, Manchester, New Hampshire, encourages you find a support group:

“Realize that there are others who have been through this, find them, and use them as part of your support system.” (pp 132-137)

A-Fib Wreaks Havoc with Your Head as Well as Your Heart.

Seven ways to cope with feat and anxiety of a-fib at A-Fib.com

Article: Seven Ways to Cope

Anxiety, fear, worry, confusion, frustration and depression, and at times, anger. The psychological and emotional effects of A-Fib can be debilitating. Recent research indicates that “psychological distress” worsens the severity of A-Fib symptoms.

Don’t be ashamed to admit how A-Fib makes you feel (especially if you’re a guy). Your psyche is just as important as your physical heart. Just acknowledging you have some or all of these symptoms is a step in the right direction.

For a step-by-step guide, see our article: Seven Ways to Cope with Your A-Fib Fear and Anxiety.

Acknowledge the Stress and Anxiety.
Seek Emotional Support. 

Learn more: Seven Ways to Cope with Your A-Fib Fear and Anxiety.


‘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)

Next, look for #9 on the
Top 10 List of A-Fib Patients’ Best Advice
Please, share the advice ♥ 

He’s Got A-Fib but Can’t Take Blood Thinners: What to Do?

We’ve posted a new personal A-Fib story. William F Covert tells about how in 2014 his A-Fib returned when he developed a serious lung problem. The new problem meant he could no longer take anticoagulants. So how was he going to deal with the increased risk of stroke due to having A-Fib?

William writes:

Personal A-Fib story of William Covert at A-Fib.com

William F Covert

“My A-Fib symptoms started in 2012 with dizziness and constant fatigue. Several trips to my family physician proved to be futile.

“Let Me Take a Quick Pulse Reading by Hand”

On my last exam, the doctor stopped me as we were walking out of the exam room and said, “Let me take a quick pulse reading by hand.” She did so, then performed an EKG and announced: “You have A-Fib. Can you go to a cardiologist right now?”

This was my introduction to the world of A-Fib!

The cardiologist put me on Xarelto and after an electrocardioversion, I was A-Fib free…for 15 months.

I Began to Cough up Drops of Blood

At first it was occasional. Then as time passed, it became more frequent and larger amounts. Doctors thought that the use of Xarelto was the probable cause of the bleeding and advised me to stop the anticoagulant for 6 weeks, and hopefully the bleeding would stop.

Unfortunately, it got worse. And I went back into A-Fib.” continue reading William’s story…

 

GPA Disease Means No Blood Thinners: How to Deal with A-Fib Stroke Risk?

A-Fib Patient Story #85

GPA Disease Means No Blood Thinners: How to Deal with A-Fib Stroke Risk?

By William F. Covert, May 2016

My symptoms started with dizziness and constant fatigue. Several trips to my family physician proved to be futile.

2012: “Let Me Take a Quick Pulse Reading by Hand”

Personal A-Fib story of William Covert at A-Fib.com

William F Covert

On my last exam, the doctor stopped me as we were walking out of the exam room and said, “Let me take a quick pulse reading by hand.” (Blood pressure machines normally do not detect irregular heartbeat.) She did so, then performed an EKG. “You have A-Fib. Can you go to a cardiologist right now?”

This was my introduction to the world of A-Fib!

I saw a cardiologist the same day (November 2012) who put me on Xarelto (a blood thinner) and scheduled me for an Electrocardioversion a month later.

It was successful and kept me A-Fib free…for 15 months.

After my cardioversion, I was prescribed Sotalol (an antiarrhythmic medicine) for 15 months. But when I went back into A-Fib, they discontinued the Sotalol. They felt that, since the Sotalol didn’t prevent me from relapsing into A-Fib, there was no use in taking it.

2014: Coughing Up Blood

I began to cough up drops of blood. At first it was occasional. Then as time passed, it became more frequent and larger amounts. Doctors thought that the use of Xarelto was the probable cause of the bleeding and advised me to stop the anticoagulant for 6 weeks, and hopefully the bleeding would stop.

Unfortunately, it got worse. A second CAT scan 4 weeks later revealed my lungs were full of blood.

A second CAT scan revealed my lungs were full of blood. I was diagnosed with a disease called Wegener’s (GPA) 

I was diagnosed with a disease called Wegener’s (GPA-Granulomatosis with Polyangiitis), an uncommon disorder that causes inflammation of certain blood vessels. I was never told that Xarelto triggered the Wegener’s, but it certainly could make the bleeding worse.

Back in A-Fib, but Can’t Take Blood Thinners

The Wegener’s (GPA) caused damage and bleeding to my lungs, and I went back into A-Fib on March 31, 2014.

I was subsequently taken off of blood thinners and put on a low dose aspirin regimen to provide some element of safety from an A-Fib-related stroke.

Because of the Wegener’s, I would not be able to take blood thinners like warfarin (Coumadin) or Xarelto on a long-term basis.

Stroke Risk: Alternatives to Blood Thinners

I was acutely aware of the potential stroke possibility, because of being in A-Fib and not being able to take blood thinners. With A-Fib you need blood thinners to prevent a stroke. But Wegener’s (GPA) is a disease that causes bleeding. Blood thinners would only exacerbate the problem.

I was acutely aware of the potential stroke possibility, because of being in A-Fib and not being able to take blood thinners.

My cardiologist discussed the various alternatives to blood thinners. Some were invasive and not recommended because of my age (79).

After a few visits, my cardiologist told me about a new procedure using the Watchman device which would both help protect me from an A-Fib stroke and afterwards not require me to take anticoagulants.

[The Watchman Device closes off the Left Atrial Appendage (LAA) where 90%-95% of A-Fib clots and strokes come from.]

The Watchman Device: Weighing the Odds

If I decided to have the Watchman device installed, I would be required to be on the anticoagulant warfarin for 45 days afterwards. Then I’d need to take Plavix (similar to aspirin) for 6 months after that.

Why Coumadin and Plavix After Installing the Watchman? 

In the U.S., the Food & Drug Administration (FDA) requires the use of warfarin after installing the Watchman because it takes about 45 days for the thin layer of heart tissue to grow over the device. This is to insure you won’t have any blood clots that could pass around it and cause a stroke.

You will have a Transesophageal Echocardiogram (TEE) to determine the progress at the 45-day period and again at 6 months until Plavix can be stopped. Plavix is another requirement of the FDA. Doctors have to follow the FDA guidelines. (Boston Scientific is the manufacturer of the Watchman.)

For someone like me with Wegener’s, even this short a time on warfarin and Plavix was risky. But the effects of a stroke would be for life or might kill me.

For someone like me with Wegener’s, even this short a time on warfarin and Plavix was risky. But the effects of a stroke would be for life or might kill me.

My doctors would not offer their okay for me to be on warfarin and Plavix, even for that short a time.

Getting a Second Opinion: I also visited the Mayo Clinic in Rochester, MN for a second opinion. The pulmonologist (specialist in lungs and respiratory system) said that, because my Wegener’s was then in remission, a short course of blood thinners would be OK. However, the cardiologist told me he did not recommend doing this.

Bottom line: It had to be my decision.

2016: Chooses the Watchman (at Age 79)

After researching and reading the reports about all the clinical trials in the U.S. and the Watchman success stories in Europe, I decided, “This is for me!” I would go for the Watchman. This was better odds for me.

Catheter positioning the Watchman occlusion device at the mouth of the Left Atrial Appendage

Catheter placing Watchman in LAA

The procedure to insert the Watchman device took less than 2 hours at Ochsner Hospital, New Orleans, LA, January 20, 2016 by Dr. Stephen Ramee, Interventional Cardiologist.

I was on warfarin for a total of 45 days, and now I’m on Plavix for 6 months―till the middle of September 2016.

So far everything is going fine with me―but I’ll be glad when I’m finished with the Plavix.

I Still Have A-Fib, But It doesn’t Keep Me Down

I have A-Fib symptoms all the time. I feel the fibrillation, and it causes dizziness and fatigue. But I am better in the AM and get more fatigued around 2:00 PM. This doesn’t keep me down. I take care of our yard, play golf and travel, etc. My blood pressure medicine has been adjusted to assist in decreasing the light-headedness and fatigue. However, the GPA (Wegener’s) medication that I have to take can also cause these types of reactions.

I am now taking 100 mg of metoprolol daily which seems to be controlling my heart rate, although erratically. My heart rate is usually between 65-75 beats per minute.

Lessons Learned graphic with hands 400 pix sq at 300 resLessons Learned

If you have A-Fib and have other heart issues that will not allow blood thinners, consider the Watchman device implant.

I have never looked back and believe it was a great decision for me.

[William invites you to email him with your questions about Wegener’s disease and the Watchman device.]

William F. Covert, New Orleans, LA
covach(at)cox.net

Editor’s comments
Kudos to William for being proactive, educating himself, getting a second opinion and dealing with a very difficult situation.
William’s dilemma is not unique. Many people with A-Fib can’t tolerate or react badly to anticoagulants. Without anticoagulants, they are 4-5 times more likely to suffer an A-Fib stroke. With 90%-95% of A-Fib clots coming from the Left Atrial Appendage (LAA), the Watchman device (and other occlusion devices) are a welcome alternative to anticoagulants.
Guarantee Against Stroke? Does the Watchman Device guarantee William will never have an A-Fib or other kind of stroke? No. Like anticoagulants, the Watchman device basically reduces William’s stroke risk to that of a normal heart-healthy person (but they can have a stroke, too). There is nothing on the market that will absolutely guarantee you will never have a stroke. However, the Watchman Device comes close and it’s better than a lifetime on warfarin. (Be advised that clots and stroke can develop in other areas than just the LAA.)
William Can Still Have a Catheter Ablation: While William is protected from A-Fib stroke, he still has A-Fib. If he so chooses, he can have a catheter ablation to fix his A-Fib. Many EPs routinely perform a catheter ablation on people who have had a Watchman device installed, especially in Europe where they have been using the Watchman device since 2004. See: A Watchman and Ablation Combo? Everything You Never Thought to Ask.
Be proactive! Learn from William’s story. If he hadn’t done his own research and got second opinions, he might already have suffered an A-Fib stroke.
For more about the Watchman, see my two articles: Watchman Device Option to Blood Thinners and Watchman Better Than a Life on Warfarin.

Back to the Top

Return to Patient A-Fib Stories

If you find any errors on this page, email us. Y Last updated: Saturday, July 23, 2016

Become your own best patient advocate - horizontal Blue 400 x 328 pix at 300 res

Read other stories of A-Fib patients dealing with Atrial Fibrillation: see Personal A-Fib Stories.

Patients’ Best Advice #7: Persevere—More Than One Treatment May be Needed

THE TOP 10 LIST #7

Persevere-Try More Than One Treatment if Necessary

A-FIB PATIENTS’ BEST ADVICE

From Beat Your A-Fib: The Essential Guide to Finding Your Cure, Chapter 12: Your Journey to a Cure. These patients needed more than one type of treatment to become free from the burden of Atrial Fibrillation:

Joan S.

Joan Schneider, Ann Arbor, MI, USA, tells about starting with drug therapy:

“The Pill-in-the-Pocket (PIP) [drug therapy] served me well prior to my [catheter ablation] procedure.” (pp. 119-124)

Jay Teresi, Atlanta, GA, describes his second ablation after being A-Fib free for three-years:

Jay T.

Jay T.

“[My EP] explained that my first procedure was a success. However, during the healing process a tiny spot did not scar and this allowed the A-Fib to trip again. He ablated that portion and touched up all the other areas. I have now been free of A-Fib for over four years (as of September, 2011).” (pp. 98-100)

Harry Emmett Finch, Malibu, CA. With 40-years of A-Fib, Emmett’s treatment evolved beyond drug therapy to his PV catheter ablation, then AV Node ablation with Pacemaker and, most recently, installation of the Watchman device:

Emmett F.

Emmett F.

“There is more help available today than when I first developed my A-Fib [in 1972], and I’m sure more treatment options (like the Watchman device) will be available in the future.” (pp 181-189)

A-Fib is Not a One-size-fits-all Disease

Your Atrial Fibrillation is unique to you. Along with various treatments, you may need to address concurrent medical conditions (i.e, hypertension, diabetes, obesity, sleep apnea). Likewise, you may need to make lifestyle changes (e.g., diet, exercise, caffeine, alcohol, smoking).

In addition, your heart is a resilient muscle that tends to heal itself, so you may need repeated procedures.

Try More Than One Treatment if Necessary.

Learn more at: Treatments for A-Fib


‘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)

Next, look for #8 on the
Top 10 List of A-Fib Patients’ Best Advice
Please, share the advice ♥ 

Help Others with A-Fib: Share What’s Working for You

You’ve done your homework. You’ve learned about your A-Fib triggers. You’ve found some relief from your symptoms.

Why not share an insight or two with other patients with your same symptoms? Is a specific treatment working for you? Have lifestyle changes helped? Or, perhaps, an alternative or homeopathic remedy?

Won’t you email us and share your tip?

Sharing is What This Website is All About.

As Steve writes in his own personal A-Fib story: “I started A‑Fib.com to spare others the frustration, depression, and debilitating quality of life the disease caused me.” Won’t you join us in this noble effort?

Do it NOW! Send us an email. What can you share to help others deal with this ‘demon’ Atrial Fibrillation?

Send us a tip to help other A-Fib patients

Do it TODAY!
Email Us

P. S. Have more than a tip share? How about sharing your A-Fib story! Read how to write and submit your personal experience A-Fib story.

Patients’ Best Advice #6: Be Courageous. Be Aggressive.

THE TOP 10 LIST #6

Don’t settle. Be courageous. Be aggressive.

A-FIB PATIENTS’ BEST ADVICE

From Beat Your A-Fib: The Essential Guide to Finding Your Cure, Chapter 12: Your Journey to a Cure. Advice to be proactive from patients now free from the burden of Atrial Fibrillation:

Joy G.

Joy G.

Joy Gray, Manchester, New Hampshire

“A-Fib tends to be a progressive disease, so taking an aggressive approach to treatment early on may be your best option. (pp.132-137)

Sheri Weber, Boyce, Virginia

Sheri Weber on A-fib.com

Sheri W.

“A-Fib hardly ever gets better. Be aggressive. Anger and determination led me to researching options. Find the solution that fits you best.  Every case is different.
You can learn from others’ experiences, but you cannot determine what is best for your case unless you have all the facts, tests and personal goals in line.” (pp. 106-109)
Michele Straube

Michele S.

Michele Straub, Salt Lake City, Utah

“Do not take “this is as good as it gets” as an answer— do your own research about what’s possible and take a co-leadership role with your doctor.” (pp. 88-90)

Read A-Fib Patient Stories of Hope and Courage

A-Fib Personal Story on A-Fib.comOther A-Fib patients have been where you are right now. Dozens have shared their personal experience here at A-Fib.com (starting with Steve Ryan’s story in 1998). Told in the first-person, many stories span years, even decades. Symptoms will vary, and treatments choices run the full gamut.

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. Go to: Personal A-Fib Stories of Hope and Encouragement.

Read how others found the courage
to seek their A-Fib cure.

Learn more at: Personal A-Fib Stories


‘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)

Next, look for #7 on the
Top 10 List of A-Fib Patients’ Best Advice
Please, share the advice ♥ 

Inspiration: Get Your A-Fib Fixed Advises Ex-A-Fib Patient Daniel Doane

DANIEL DOANE cloud quote 600 x 750 pix at 300 resBe inspired by Daniel Doane and his first-person account of his journey to a life free of A-Fib. Read his story and many others in our book, Beat Your A-Fib. Or visit A-Fib.com’s Personal A-Fib Stories of Hope for over 80 narratives by patients dealing with the burden of Atrial Fibrillation.

Patients’ Best Advice #5: Don’t Let A-Fib Wreak its Havoc! Seek Your Cure ASAP

Top 10 List #5 Dont Delay 600 x 350 pix at 300 res

THE TOP 10 LIST #5

Don’t Delay-Get Treatment as Soon as Practical.

A-FIB PATIENTS’ BEST ADVICE

From Beat Your A-Fib: The Essential Guide to Finding Your Cure, Chapter 12: Your Journey to a Cure. Advice from patients now free from the burden of Atrial Fibrillation:

Daniel D.

Daniel D.

Daniel Doane, Sonora, California, USA, A-Fib free after Totally Thoracoscopic (TT) Mini-Maze surgery:

“I didn’t realize how continued A-Fib so drastically remodels your heart. ‘A-FIB BEGETS A-FIB’ was the phrase that brought it home to me.
Every instance of A-Fib changed my heart, remodeled the substrate, and made it more likely to happen again. Get your A-Fib taken care of. It won’t go away. It may seem to get better, but it will return. (pp. 152-162)
Roger M.

Roger M.

Roger Meyer, Columbus, Ohio, from three generations of A-Fib, had the Cox-Maze surgery:

“I can now say, first hand, that there ARE bad effects from A-Fib and especially from A-Fib that is not treated early. I now wish I had had some of the today’s more aggressive A-Fib treatment options which weren’t available to me in my younger years.
My best advice: Don’t let A-Fib wreak its havoc untreated!” (pp. 110-115)
Joan S.

Joan S.

Joan Schneider, Ann Arbor, MI, from Pill-in-the-Pocket therapy to A-Fib free after catheter ablation:

“My advice to other AF patients: Know that paroxysmal AF becomes chronic. Drugs only work for so long. Heart modification will occur, and options will become few. Get with a great EP  and/or AF clinic and find your cure.” (pp. 119-124)

Leaving Patients in A-Fib Overworks the Heart, Leads to Remodeling and Fibrosis

Don’t just manage your A-Fib with medication. Seek your Cure.

Controlling symptoms with drugs, but leaving patients in A-Fib, overworks the heart, leads to fibrosis and and increases the risk of stroke. Fibrosis makes the heart stiff, less flexible and weak, reduces pumping efficiency and leads to other heart problems. The abnormal rhythm in your atria causes electrical changes and enlarges your atria (called remodeling).

A-Fib begets A-Fib. Your A-Fib episodes become more frequent and longer, often leading to continuous (Chronic) A-Fib. (However, some people never progress to more serious A-Fib stages.)

Don’t Delay—Seek Your A-Fib Cure.

Learn more at: Overview of Atrial Fibrillation


‘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)

Next, look for #6 on the
Top 10 List of A-Fib Patients’ Best Advice
Please, share the advice ♥ 

PVC-Free After Successful Ablation at Mayo Clinic by Dr. Mulpuru

John and Marcia Thornton-Personal A-Fib story at A-Fib.com

John and Marcia Thornton

A-Fib Patient Story #84

PVC-Free After Successful Ablation at Mayo Clinic by Dr. Mulpuru

By John Thorton, as told to Steve Ryan, December 2015

In September, John Thornton wrote us about his successful ablation at the Mayo Clinic in Rochester, MN:

“Well, I am now home from the Mayo Clinic. I cannot give high enough praise to the way Mayo treated me. The nurses were outstanding, and the delivery of care exceptional. The Mayo philosophy and attitude is far superior to the way the local hospital does things.”

Difficult Ablation with Multiple A-Fib, Flutter and PVC Spots

On July 27, 2015, John had his ablation procedure at the Mayo Clinic.

Besides A-Fib and A-Flutter, a particular problem for John was PVCs. Premature Ventricular Contractions (PVCs) are premature beats that occur in the ventricles, i.e., the heart’s lower chambers. (Premature beats that occur in the atria, the heart’s upper chambers, are called premature atrial contractions, or PACs.)

John’s ablation turned out to be quite an extensive procedure. Dr. Siva A. Mulpuru found two sources of PVCs, two spots A-Fib was originating from,  and one where atrial flutter was found.

The ablation took six hours which was much longer than a typical pulmonary vein ablation/Isolation (PVA/I).

High Density PVCs and Low Ejection Fraction

John Thornton: “According to Mayo, if PVCs are over 20% of your heart beats, they are dangerous. Mayo calls that level ‘high density PVCs”.  High density PVCs cause your heart muscle to weaken.

My high density PVCs were 30% of my heart beats, and my ejection fraction was down to 41%.

[An ejection fraction (EF) below 50%, means your heart is no longer pumping efficiently to meet the body’s needs and indicates a weakened heart muscle.] 

After the ablation, my PVCs were down to 15% of my heart beats, and my ejection fraction was back up to 64%.”

[Spot on! A normal ejection fraction is in the range of 50 – 65%.]

My Heart is Beating Normally Now!

“It’s now December 2015 and I am still A-Fib free. I do have occasional PVCs still, but no where near the extent of what I had prior to the ablation. I am almost completely without symptoms of any rhythm problems.  I’m still on a beta blocker and a blood pressure med.

Lessons Learned

Lessons Learned graphic with hands 400 pix sq at 300 resDo NOT listen when doctors say PVCs are harmless.

The local MDs (about a half dozen different ones), cardiologists, EPs, and other local specialists, all told me stuff like, “Everyone has PVCs” and “PVCs are benign” and “It is just anxiety” and “You just need to learn to live with it” which was completely WRONG.

Be Assertive, Even Aggressive: I had to set up my own appointment at Mayo 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.

I honestly believe that had I not gone to Mayo I would have suffered some major heart event, or possibly death.

Follow-up and Changing MDs: Many of the local MDs are not receptive to me now. I had to change my local cardiology group to one where they would listen to the recommendations from Mayo.

I had to interview local doctors to find one willing to listen to Mayo’s staff and order follow-up tests for me.  Simple things like ECGs, lab test, etc…

I am planning all my major follow-ups back at Mayo because of the stress between the locals (with the one exception) and the people at Mayo.

One Final Thought: If in doubt, go to the Mayo Clinic and get checked out.  They know what they are doing and are the real experts.

Feel free to email me if you have questions about PVCs and/or the Mayo Clinic.”

John Thornton, Sioux Falls, SD
johnthornton(at)sio.midco.net

Editor’s Comments
To learn more about PVCs, see my article: FAQs Coping with A-Fib: PVCs & PACs
Like John, don’t be afraid to fire your doctor! To learn how to interview doctors, see our page: Finding the Right Doctor for You and Your A-Fib.
PVCs aren’t always benign and, especially for people with A-Fib, should be taken seriously. Often they precede or predict who will develop A-Fib. They can increase chances of a fatal heart attack or sudden death. Sites in the heart that produce PVCs can be mapped and ablated just like A-Fib signals.
Kudos to John for being his own best patient advocate, for taking the bull by the horns and dealing with his PVCs which were destroying his life and driving him crazy. In spite of what he heard from everyone else, he persevered and went to probably the best center in the US for treating PVCs—the Mayo Clinic. Now he’s A-Fib free and only has occasional PVCs. Way to go, John!

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