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

New Personal Story: A-Fib Becomes Persistent After Infection

Joe first noticed a pronounced arrhythmia in January 2016. He had a stress test done and a sonogram of his heart. All were good, but doctors could see he was going in and out of Atrial Fibrillation. Read what happened next for Joe Kempin:

Sharon & Joe Kempin

Sharon & Joe Kempin

In early March, I got very sick with a urinary tract infection and a 104° temperature. I could not eat and was in constant A-Fib. After I got well with antibiotics, I stayed in A-Fib.

We tried Cardioversions twice. Each one took me out of A-Fib for 3 days, but then right back into it. I was on blood thinners (Eliquis) then.

Experience of a Lifetime: Ablation at Fairfax Hospital

On May 18 I had an ablation. Wheeling me into the operating room was an experience of a lifetime. This was a brand new hospital building at Fairfax Hospital. The operating room was right out of Star Trek. Huge! …Continue reading Joe’s A-Fib story…

Patient Advice: You May Need to ‘Fire’ Your Current Doctor

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

A-Fib-free after 30 years, Michele Straube from Salt Lake City, Utah.

‘I Want to Cure My A-Fib, Not Just Manage It.’

Keep in Mind: For many A-Fib patients, their best outcome came about only when they told their doctor, ‘I want to cure my A-Fib, not just manage it.’ (And, if needed, they also changed doctors.)

How to Find the Best Doctor for You

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

An electrophysiologist (EP), is a cardiologist who specializes in the electrical functions of the heart.

Seek an electrophysiologist (EP), a cardiologist who specializes in heart rhythm problems (the electrical functions of the heart). Do your research.

Look for a doctor who will partner with you to create a treatment plan—a path to finding your cure or best outcome. To learn how to make this happen, read Finding the Right Doctor for You and Your A-Fib.

Personal A-Fib Story: To learn the importance of finding the right doctor, read Michele Straube’s personal A-Fib experience: Cured after 30 years in A-Fib.

Run―don’t walk―to the best EP you can afford.

New A-Fib Story: She’s 21, Living in A-Fib with Meager Treatment


It’s heart breaking to read about a young person with such a debilitating case of A-Fib, and who lives in a region with so little treatment to offer her. I am researching ways to send Ashley to the US for treatment. If you have any suggestions, Email me. We thank Ashley for sharing her story:

ashley-mogg-my-story

Ashley Mogg

“As child I always had a rapid beating heart. My parents were told that soda has that effect on children, and I was no longer to ingest it. Thinking it was the soda, it was further ignored.

I’m now 21 and living with atrial fibrillation. I live in the Caribbean. There is little expertise with such a rare condition. I have been diagnosed with tachycardia (fast rate) AND bradycardia (slow rate).

Currently I don’t have a specific adult cardiologist because my case is more complicated than what meets the eye. My parents can’t afford the procedure or more tests. PLUS in September, I had an appendectomy. Needless to say it was a risky but necessary move. According to my anesthesiologist, my heart rate had to be increased twice while on the operating table.”  …Continue reading Ashley’s story…

Jamaican Woman, 21, Living in A-Fib with Meager Treatment

A-Fib Patient Story #92

Jamaican Woman, 21, Living in A-Fib with Meager Treatment

It’s heart breaking to read about a young person with such a debilitating case of A-Fib, and who lives in a region with so little treatment to offer her. I am researching ways to send Ashley to the US for treatment. If you have any suggestions, Email me.
ashley-mogg-my-story

Can you help Ashley Mogg get treatment?

By Ashley Mogg, November 2016

I am age 21 and living with atrial fibrillation. I have been diagnosed with tachycardia (fast rate) AND bradycardia (slow rate). I live in the Caribbean. There is little expertise with such a rare condition. I’ve had consultations from many cardiologists both in Jamaica and overseas.

Currently I don’t have a specific adult cardiologist because my case is more complicated than what meets the eye. However, efforts are being made for me to get examined in the U.S. at little or no expense. WHY YOU MAY ASK?

My parents can’t afford the procedure or more tests. PLUS in September, I had an appendectomy. Needless to say it was a risky but necessary move. According to my anesthesiologist, my heart rate had to be increased twice while on the operating table. The biopsy then revealed a low grade NET (Neuroendocrine Tumor).

Thus motivating me to find this website [A-Fib.com] and share my story.

The Beginning…Fainting

As a child I always had a rapid beating heart. My parents were told that soda has that effect on children, and I was no longer to ingest it. Thinking it was the soda, it was further ignored. I was very active in primary school and danced competitively, but I can’t ever remember having the symptoms that I later felt in high school.

Final [senior] year at 17, I had to partake in a sport.  So I chose hockey. But after our first training, as we stood and listened to coach, I was feeling extremely unfit. My heart rate sped up and my chest got tight. My throat felt as if it was closing and I was starving for a breath.

Most Frightening…Losing Sight!

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 but nothing else. I was in what the doctors called pre-faint or pre-syncope. It was so scary for me.

Testing by an Adult Cardiologist

I told my doctor, then she referred me to an adult cardiologist. The specialist did an echocardiogram and EKG and a stress test. The results of the stress test were a high 270 pulse, then lower the second visit. She prescribed a beta blocker, low dosage.

But my bradycardia was stimulated by it (in other words I don’t react well to beta blockers). I had pre-syncope as a side effect.

Then there were the holter tests that revealed occasional tachycardia some days (195 bpm highest) and bradycardia when asleep (35-49 bpm lowest). My last ejection fraction report was approx. 47%.

Choosing College or Health

At this point I am a veteran of these tests. I have been holding off on college. But if I am unable to get help, I will have to move onward. I had to choose between my health and my school and I chose school which was the wrong move.

I now understand health comes first. Therefore, the story continues. However, I would love to get more insight on cheaper solutions or other procedures.

The Emotions—Depression, Anxiety and Withdrawal

A few months after being told to cease sports because of my condition, my cousin passed away. And the emotional toll of A-Fib was great. I became extremely depressed yet anxious and regressed to feeling estranged from family and friends. I believe the medical term is clinical depression.

Being constantly told that my condition is bad by local doctors took its toll on my mind. Also, there was the fluctuating weight loss and loss of appetite. It is still so hard to keep the weight I had when I was 16. Sometimes I would get very thin.

My A-Fib is worse when I am active, i.e., fast paced activities, and when I sleep. I have yet to be in constant arrhythmia as it is occasional for me. It is most definitely tied to my stress/anxiety level as well.

Faith and a Purposeful Life

I am a woman of faith, but it takes prayers and positive thinking to keep living with peace of mind. I have to say though that I am in a better place of happiness and still believe in a complete purposeful life.

Lessons Learned

Lessons Learned graphic with hands 400 pix sq at 300 resEducate 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.

The moment you notice heart abnormalities of any sort, get them checked out.

But DO NOT SELF DIAGNOSE! However, make sure you are fully aware of the language your doctors use and what they are telling you, so you can follow through with your treatment or management plan. WHY? There are different types of arrhythmias and fibrillations. Yours might be different than others’.

Stay positive…You are NOT ALONE!

Ashley Mogg, Jamaica

Editor’s Comments:
Can you help Ashley? How can we arrange for her to travel to the U.S. for treatment? It’s such a shame that a wonderful 21-year-old woman like Ashley has A-Fib at such a young age. A-Fib is supposed to be an older person’s disease, isn’t it? I am currently researching ways we could finance Ashley to travel to the US to be treated. Do you have any suggestions? Email me.
Horrible A-Fib symptoms―but faith and hope. Ashley’s A-Fib not only speeds up her heart rate (270), makes her feel dizzy, tightens up her chest, causes her shortness of breath, reduces her ejection fraction to 47, but even makes her lose her sight like everything is going pitch black. She can’t play sports or go to college. Then her cousin died. It’s no wonder she went into A-Fib anxiety and clinical depression, and suffered weight loss.
Faith and a purposeful life. Through it all, Ashley became a woman of faith and a purposeful life. “It takes prayers and positive thinking to keep living with peace of mind.” Ashley knows she is not alone.
“You Are Not Alone!” Our volunteers offer you support! Do you need support from others who know what you are going through? Check out our A-Fib Support Volunteers and our A-Fib Positive Thought/Prayer group.

New A-Fib Story: Frustrated, Crosses Canadian Border for Treatment

Rani and Moni Minhas

Rani and Moni Minhas

Our newest personal A-Fib story is told by a Canadian about his wife, Rani, who’s first symptom was feeling dizzy when checking in for a flight from Barbados. Over the next many months, she developed palpitations and A-Fib.

“Rani had fatigue and didn’t feel right. Before this, she was always healthy. She continued to exercise, as much as she could. But A-Fib really bothered her and made her feel both sick and anxious. Our whole family was worried about her.
Under the Canadian nationalized health care system, it took a lot of proactive action and aggressive approach to get proper help (which in the end wasn’t the proper treatment).
Almost every time we went to a doctor or a specialist, none of them had properly reviewed her file before they walked in to talk to her. It was pathetic. And we went to 4 cardiologists and 2 doctors.”

Frustrated for his wife, Moni turned to his friend, Google, and searched the web for information about Atrial Fibrillation. Read what Moni discovered and learn why they decided to cross the Canadian border to seek treatment in the U.S. …Continue reading…

Urinary Tract Infection Leads to Persistent A-Fib Followed by Two Failed Cardioversions

A-Fib Patient Story #91

Urinary Tract Infection Leads to Persistent A-Fib Followed by Two Failed Cardioversions

by Joe Kempin, October 2016

Sharon & Joe Kempin

Sharon & Joe Kempin

I am 64 years old and live in Fairfax, VA. In January 2016, I was afflicted with a pronounced arrhythmia. I could feel it often. I had a stress test done and a sonogram of my heart. All were good, but they could see I was going in and out of A-Fib.

In early March, I got very sick with a urinary tract infection and a 104° temperature. I could not eat and was in constant A-Fib. After I got well with antibiotics, I stayed in A-Fib.

We tried Cardioversions twice. Each one took me out of A-Fib for 3 days, but then right back into it. I was on blood thinners (Eliquis) then.

Experience of a Lifetime: Ablation at Fairfax Hospital

On May 18 I had an ablation. Wheeling me into the operating room was an experience of a lifetime. This was a brand new hospital building at Fairfax Hospital. The operating room was right out of Star Trek. Huge! The operating table was skinny with 8 people standing around it as I climbed on. None of them were doctors.

This was a brand new hospital building at Fairfax Hospital. The operating room was right out of Star Trek. Huge!

I wasn’t nervous, but for some reason I was feeling VERY sick. I don’t know why. They all got very busy on me. There were 2 computer cubicles off to the side, stainless steel machines hanging from the ceiling, and a floating lap top. IT WAS AMAZING!

It all went well, out of A-Fib. My doctor was Dr. Haroon Rashid at Virginia Heart. He was very good.

Minor Bleeding Complication Post Ablation

During the ablation, they had inserted 2 catheters into veins in my left and right groins. But that night one hole started to bleed. That’s a big problem. They patched it up REAL QUICK. But I could not move for 8 hours total. <!–more.

There was no pain involved after the ablation. But my heart felt like it was bound up with rope, like it was a loose jellyfish before but now it felt tightened up with a rock sitting on the top of it, but not painful, just there. I was still able to go home the next morning.

Recovering Back Home

I had gone to the gym regularly, about 3 times a week for years. After a few weeks, I was able to try that again but really couldn’t do much and then was exhausted for the rest of the day. I was on Eliquis and Multaq. I got short of breath very quickly. This was true for 2½ months. I came off of Multaq, then felt somewhat better, and at 3 months came off Eliquis and felt much better.

I came off of Multaq, then felt somewhat better, and at 3 months came off Eliquis and felt much better.

I had A-Fib 2 weeks after the ablation for 2 days and then again after 6 weeks for a few hours. [This is common during the 3 month ‘blanking ‘period’.] I am at now 4 months post-ablation. I occasionally go into A-Fib for a few hours now, but feel good. Only taking aspirin now.

There is an App for your smartphone called Kardia by AliveCor that can tell you when you are in A-Fib. [See our review of the AliveCor Kardia by Travis Von Slooten]

Lessons Learned

Lessons Learned graphic with hands 400 pix sq at 300 resDon’t worry about having an ablation. The operating room is an amazing experience, and there is no pain. The ablation procedure is very successful.

It won’t feel like you had a serious operation, but you did. It may take months to get back to feeling like yourself. You may feel a large loss of energy and need to sleep a lot. Plan on resting a good deal. 5 months since the ablation, I have only about half the energy I had last year at this time. Do the ablation right away.

Life and your abilities can change overnight. Get done what you want to do. Finish that bucket list.

Joe Kempin
Fairfax, VA

Editor’s Comments:
Joe didn’t mess around. With persistent A-Fib he wanted results. When 2 cardioversions failed after a few days (most patients’ A-Fib returns in a week to a month), he didn’t waste time with six-months to a year of drug therapies. Just four months after his diagnosis, Joe opted for a catheter ablation. Good for you, Joe!
Is Joe’s ablation a success? Even though Joe still experiences occasional A-Fib episodes, he feels much better than when he was in Chronic A-Fib. His ablation was for him a success and greatly improved his quality of life.
Because of having been in persistent A-Fib and because he may have had paroxysmal (occasional) A-Fib for years, he was probably a more difficult case. If Joe wants to be completely A-Fib free, he may have to return for a second touch-up ablation which has a higher success rate. Rather than having to do a complete Pulmonary Vein Isolation procedure, the EP during a second ablation usually only has to isolate a few A-Fib producing spots or gaps to make Joe A-Fib free.
Why shortness of breath and loss of energy? It’s unusual to feel shortness of breath for as long as 2½ months after an ablation, as Joe did. It’s hard to speculate what may have caused that shortness of breath. Perhaps it was the medications. The bottom line is Joe feels OK now and is back exercising at the gym and living a normal life.
Most people after a successful ablation feel more energetic or at least as energetic than before they developed A-Fib, because their heart is pumping normally. We don’t know why Joe is experiencing a loss of energy. It may be because he still has occasional A-Fib episodes.
I am concerned about his low energy level. Joe should continue to discuss this with his doctor. Together they may find a solution to getting his pre-ablation energy back.

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

Earlier this year we published a 10-part series of posts based on ‘The Top 10 List of A-Fib Patients’ Best Advice’ in Chapter 12 of my book, Beat Your A-Fib.ten-10-list-patients-advice-10-27-2016-600-x-2000-pixt-at-300-res

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 the orginial posts in this series, just click on the the following links:

#1: What’s an EP?
#2: Dump Your Doctor?
#3: Don’t Believe Everything You’re Told About A-Fib
#4: Don’t Just Manage Your A-Fib with Meds. Seek your Cure.
#5: Don’t Let A-Fib Wreak its Havoc! Seek Your Cure ASAP
#6: Be Courageous. Be Aggressive.
#7: Persevere—More Than One Treatment May be Needed
#8: Get Emotional Support for the Stress and Anxiety
#9: Learn All Your Treatments Options Before Making Decisions
#10: Become Your Own Best Patient Advocate

From Chapter 10 of Beat Your A-Fib: The Essentiall Guide to Finding Your Cure, by Steve S. Ryan, PhD.

Frustrated, Crosses Canadian Border for Ablation by Dr. Andrea Natale in Austin, TX

A-Fib Patient Story #90

Frustrated, Crosses Canadian Border for Ablation by Dr. Andrea Natale in Austin, TX

By Moni Minhas, Calgary, Alberta, Canada, October 2016

Rani and Moni Minhas

Rani and Moni Minhas

My wife, Rani Minhas, developed A-Fib in January 2015 when she was 61 years old. She felt dizzy when we were checking in for a flight from Barbados. She got better that day, and we took a later flight.

Over the next many months, she developed palpitations and A-Fib. We did not know it was A-Fib as we had never heard of the term.

“Get Used to It (A-Fib)…and It Will Get Worse.” NO! NO! NO!

Rani had fatigue and didn’t feel right. Before this, she was always healthy. She continued to exercise, as much as she could. But A-Fib really bothered her and made her feel both sick and anxious. Our whole family was worried about her.

Under the Canadian nationalized health care system, it took a lot of proactive action and aggressive approach to get proper help (which in the end wasn’t the proper treatment).

What is a normal BP reading? Less than 120/80 mm Hg (<120 systolic AND <80 diastolic).

The first cardiologist suggested Rani start taking a blood thinner and dismissed A-Fib as something that “happens when you get old, get used to it; and it will get worse.”

He did not even prescribe beta blockers. Instead, he suggested a Blood Pressure medicine. Her BP that day was 165/90.

After waiting for weeks, we went to cardiologist #2. He prescribed beta blockers and recommended Rani take a higher dosage when she felt palpitations [known as pill-in-the-pocket drug therapy].

Note: Almost every time we went to a doctor or a specialist, none of them had properly reviewed her file before they walked in to talk to her. It was pathetic. And we went to 4 cardiologists and 2 doctors.

Frustrated! Searches Web and Finds the A-Fib Coach Steve Ryan

Frustrated, one day, I turned to my friend “Google” and found The A-Fib Coach. I contacted Steve Ryan and paid the small fee he charges [for one-to-one coaching]. Then I ordered the Beat Your A-Fib book he has written. I never read the book as it seemed scary to read (not the book but the symptoms and consequences of A-Fib!).

Her first doctor: “A-Fib is something that happens when you get old, get used to it; and it will get worse.”

Steve was wonderful to talk to and told me about the Catheter Ablation procedure and gave me a lot of background on it and its benefits and risks, which were not many in my wife’s case.

Consultation with Dr. Thometz in Billings, Montana

I now went back to my friend “Google” and looked for an expert in Catheter Ablation close to our home in Calgary (Alberta Canada). Acrosss the U.S. border, I found someone in Billings, Montana. I made an appointment, and Rani and I drove 8 hours to Billings and stayed a night in the hotel.

The next morning, we spoke for 2 hours with Dr. Alan Thometz, the cardiac Electrophysiologist (EP) in Billings Clinic. He was very knowledgeable and helpful and answered every question we had. (We had a lot of help from Steve Ryan as to what questions to ask.)

We were comfortable with Dr. Thometz doing the procedure, but there was an 8 week wait. And Steve Ryan did not know him personally, which was not critical but was of some importance in deciding.

Let’s Find the Best EP in the USA

I asked Steve Ryan to suggest the best EP Cardiologist in the USA. He recommended Dr. Andrea Natale from Austin TX and Dr. Vivek Reddy in NY. We got an appointment with Dr. Natale quickly and in early June 2016 went for a catheter ablation procedure.

Ablation by Dr. Natale―No More Palpitations, No More A-Fib!

Dr Andrea Natale

Dr A. Natale

Dr. Natale did the procedure which took half a day. Rani stayed in the hospital overnight. Right after the procedure, we stayed in a hotel for another 10 days, even though it was not required. But I wanted Rani to be comfortable before coming home.

The procedure was great. No more A-Fib, no more palpitations. And no more beta blockers.

Recovery Period: 3 to 6 Months

We were told there is a 3 to 6 month recovery period [blanking period) for the heart to heal. Rani did have a few days of high BP and 1 day of low BP while her heart was healing. This is almost all gone, and she has 120 BP now on a regular basis which is perfect.

It has now been over 4 months, and Rani is now jogging and exercising every day. She does get some fatigue, but we feel pretty good that she will get over that by January 2017 based on trends. For now, she takes BP medicine and a blood thinner (Xarelto).

Gratitude to Steve Ryan

To say Steve Ryan was extremely helpful is an understatement. Without his guidance, we would not have known that Catheter Ablation is an option. Without him, we would not have found Dr. Natale. We haven’t met Steve Ryan in person, but the next time we’re in Los Angeles, we’ll take him out for dinner as a way of thanks.

Lessons Learned

Lessons Learned graphic with hands 400 pix sq at 300 resGood health is the best gift we can have. If you have A-Fib (or any health issues), be aggressive and proactive in seeking treatment and advice.

Do not assume every healthcare professional is doing their job, including doctors and cardiologists. Use your own judgement and ask a lot of questions. Challenge the medical staff.

Moni Minhas
minhas@minhasbrewery.com

Editor’s Comments:
Be Proactive! Moni and Rani’s story is an excellent example of being proactive rather than passively living with A-Fib for the rest of her life.
I’m astounded that any doctor today would tell Rani and Moni to just live in A-Fib, “get used to…and it will get worse.”
Moni knew something was wrong with this doctor’s advice. He educated himself about A-Fib. He got second (and third) opinions. He didn’t let his beloved wife, Rani, suffer from A-Fib. He found the best doctor he could and got her treated and cured before her A-Fib could get worse. Her quick treatment may have made her A-Fib much easier to cure.
Long-Term Effects of Living in A-Fib: Aside from feeling miserable, having a reduced quality of life, and suffering emotional stress and anxiety, over time A-Fib can have devastating effects on your heart, brain and other organs.
Don’t Live in A-Fib! Follow Moni and Rani’s example! Don’t listen to doctors and others who may tell you that A-Fib can’t be cured, that the only thing possible is to improve A-Fib symptoms; or that catheter ablation is experimental and not proven; or that you have to take these A-Fib drugs for the rest of your life and you should just learn to live with A-Fib.
Instead, RUN, don’t walk to get a second opinion (and even a third)!
Compared to other heart ailments, A-Fib is relatively easy to fix. You owe it to yourself to get the facts, to look at all your treatment options, not just drugs.

You don’t have to live in A-Fib!

2-bya-a-fib-cloud-quote-daniel-doane-600-x-300-pix-at-300-res

Get Your Life Back: Don’t settle. Be courageous. Be aggressive.

Quote: Robert Dell, New York, New York, A-Fib free since 2002 - A-Fib.com

Robert Dell, New York, New York, A-Fib free since 2002

Other A-Fib Patients Have Been Where You Are Right Now

A-Fib Personal Story on A-Fib.com

Over 80 stories.

Many A-Fib.com readers have shared their personal experiences with A-Fib (starting with Steve Ryan’s story). 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. Learn more at: Personal A-Fib Stories of Hope.

Browse Over 80 Personal Stories of Hope and Encourage

Want to read stories by patients in your age group? Or from patients with your symptoms? Go to the page titled ‘Listed by Subject’.

We have a few major categories: by Cause, by Risk Factor, by Symptom, by Age group/Years with A-Fib, and by Treatment. Each category has several subcategories. Browse by subject.

Personal A-Fib Story: Read Robert Dell’s personal A-Fib story: “Daddy is always tired.” Daddy needed his life back.

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

From Steve’s Email Box: 3 A-Fib Patients in Need

Just like our ‘Personal A-Fib Stories of Hope‘, we can learn from each other, so I’m sharing a few of the emails I’ve received and my answers. One of the hardest emails to deal with often comes from outside the U.S.

Young A-Fib Patient: No EP Lab in Her Country

Had to give up college: One young person has such horrible A-Fib symptoms that she had to give up college. Upon investigation, I learned there’s no EP Lab in her country to treat her. My heart goes out to her, not only because she is so young to have A-Fib, but also because she’ll need to travel from her country for treatment, which her family can’t afford. (She’s too young to be on anti arrhythmic drugs for the rest of her life.)

How to help her? I’ve asked several EPs I know for ideas. Perhaps an EP will donate his services and a drug company or device manufacturer (with larger budgets) may offer a charitable donation to finance her travel and hospital stay. I hope someday that A-Fib.com can dedicate funds to help people like her. I’ll let you know what develops.

A-Fib Patients with Post-Ablation Challenges

I’ve received two emails I haven’t been able yet to address adequately.

HE STILL CAN’T EXERCISE
The first was from someone who had a successful catheter ablation a year ago, but still can’t exercise like he used to and suffers from lack of energy.

Steve S. Ryan - high jump at track meet

Steve, 76, masters meet

Post ablation: Usually after a successful catheter ablation, one feels better and has more energy or at least returns to the energy levels they had pre-A-Fib. I told him he should be feeling better, not worse. I shared my experience with being cured 18 years ago and participating in a Masters Track meet two days ago at age 76.

Get your O.R. report: I emailed back and asked him to get a copy of his O.R. (Operating Report) and send me a copy to review. It’s a very technical document not usually given to patients unless they ask for it (see How to Read Your Operating Room Report). When I get it, I’ll study it and email him my summary. It might explain why he is suffering from a lack of energy. I advised him, his doctor and EP may want tests to figure out what’s wrong.

SHE’S BEEN A-FIB FREE SINCE THE 90S
The second email was from someone who has been A-Fib free after surgery in the 90s. (She was probably one of the first!) Lately she has been experiencing bloating and intense pain in her legs. It’s possible that her A-Fib has returned, though her symptoms could come from other causes.

Steves Lists and Directory of Doctors I emailed back asking where she lives so I can use our Directory of Doctors to find a good EP to refer her to.

I wrote her how monitoring devices have greatly improved over the years, like the Band-aid looking Zio Patch. She’d wear it for 1-2 weeks then her EP can analyze for any arrhythmia. But that may not be enough. Her doctor and EP may want to do more testing for a condition like congestive heart failure, or how to improve her circulation and relieve the swelling.

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I get emails like these every day from patients needing independent, unbiased treatment information from a caring patient advocate. I’m proud that Patti and I continue to publish A-Fib.com to help meet this ongoing need.

YOU CAN HELP TOO! Donate toward the monthly publishing cost of this website (look for the orange PayPal button in the right column). Or, you can write an article, become an A-Fib Supporter Volunteer or share your A-Fib story. Read how to Participant at A-Fib.com.

 

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

A-Fib Patient Story #89

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

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

A-Fib Patient Story #88

My A-Fib Story: The Healing Power of Prayer

By ayatingl@gmail.com, 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.

An A-Fibber
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: Friday, December 2, 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

A-Fib Patient Story #87

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

By John Bennett, MD, July 2016

John Bennett, MD, 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 Meets Medicine.” Previously Dr. Bennett worked in Emergency Medicine in Miami, Florida.

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 ♥ 

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