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


Support Volunteers

Our Worldwide A-Fib Support Volunteers

A few of our many A-Fib.com Support Volunteers; Learn about becoming a A-Fib Support Volunteer

Learn about becoming a A-Fib Support Volunteer

When diagnosed with Atrial Fibrillation, you have many questions. It helps to have someone who has “been there” and is there for you now. Our A-Fib Support Volunteers want to help and are just an email message away.

This list of worldwide A-Fib Support Volunteers is arranged by geographical region. Note: substitute an “@” symbol for the “(at)”.

Read the special poem A-Fib’s Demise
by support volunteer, Emmett Finch, The Malibu Poet

WORLDWIDE

A-Fib Support Volunteers

WESTERN EUROPE

Ira, Rome, Italy; (Fluent in English & Italian) E-mail: idl.sorbo(at)mclinknet.it  (Experience in overcoming heart problems—heart attacks, pericarditis, cardiac asthma, bradycardia, tachycardia, PVCs & PACs, A-Fib [cured 2004], and pacemakers. He wears an ICD.) (see his personal experience story, #31: Living With a Pacemaker/ICD).

AUSTRALIA

Allan, Brisbane, Australia; Email: a-fibfriendallan(at)live.com.au

Ian, Sydney, Australia; E-mail: vagalman(at)optusnet.com.au

Roy, Adelaide, Australia; E-mail: roys1(at)tpg.com.au

Warren, Melbourne, Victoria, Australia; E-mail: redolent(at)bigpond.com (see his personal experience story, #34: A-Fib Free After Two Ablations Down Under)

EASTERN CANADA

Mark G., Barrie, Ontario; E-mail: stoneabba007(at)gmail.com

WESTERN CANADA

Darrell, Alberta, Canada; E-mail: bronc9239(at)hotmail.com

UNITED KINGDOM (ENGLAND)

David W., Norwich, Norfolk, England; E-mail: david(at)dandrhomesltd.co.uk

SOUTHERN AFRICA

Leon, South Africa, Johannesburg, Cape Town; E-mail: leon(at)mbanet.co.za

SOUTHEAST ASIA

Lee, Malaysia; E-mail: amirlee2(at)yahoo.com

Max, Shanghai, China; E-mail: max.jussila(at)gmail.com (see his personal experience story, #34: “From Shanghai to Bordeaux—a very difficult case requiring two ablations”)

For more information about our A-Fib Support Volunteers and how to volunteer, see my article: ‘Want to become a A-Fib Support Volunteer?’

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If you find any errors on this page, email us.  Last updated: Tuesday, October 6, 2015

DISCLAIMER: A-Fib.com Support Volunteers are not medical doctors and are not affiliated with any medical school or organization. Any communication with A-Fib.com Support Volunteers is not intended nor implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health professional prior to starting any new treatment or with any questions you may have regarding a medical condition. Nothing communicated by A-Fib.com Support Volunteers is intended to be for medical diagnosis or treatment. Their opinions are their own.

 

Our U.S. A-Fib Support Volunteers

A few of our many A-Fib.com Support Volunteers; Learn about becoming a A-Fib Support Volunteer.

Learn about becoming a A-Fib Support Volunteer.

When diagnosed with Atrial Fibrillation, you have many questions. It helps to have someone who has “been there” and is there for you now. Our A-Fib Support Volunteers want to help and are just an email message away.

This list of U.S. A-Fib Support Volunteers is arranged by geographical region. Note: substitute an “@” symbol for the “(at)”.

Read the special poem A-Fib’s Demise
by support volunteer, Emmett Finch, The Malibu Poet

UNITED STATES

A-Fib Support Volunteers

New England, USA
Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont

David H., Lexington, Massachusetts, Email: dholzman1776(at)gmail.com

Fred, Boston, Massachusetts; E-mail: fredfan1(at)aol.com

Mark S., New Hampshire; E-mail: seagullsnest(at)comcast.net

Rich, Boston, Massachusetts; E-mail: celtic8586(at)aol.com

Northeast, USA
Delaware, Indiana, New Jersey, New York, Pennsylvania, Ohio, West Virginia

Jerry, Long Island, New York; E-mail: Jerrynmn1(at)aol.com

Joe B., Greater New York City area; (E-mail: NG; needs updating as of 6-29-2014)

Ken, Loveland, OH; E-mail: closeks(at)fuse.net (expertise: Dr. Sirak’s Five Box Mini-Maze operation)

Scott, Montrose, NY (North of New York City): E:mail: Matrix058(at)yahoo.com. (expertise: Dealing with the ablation process)

Southeast, USA
Alabama, Florida, Georgia, Kentucky, Maryland, North Carolina,
South Carolina, Tennessee, Virginia

Ed W., Fort Lauderdale, Florida; E-mail: edwebbfl(at)gmail.com (Athlete, Heart Rate Monitor expertise) (see his personal experience story, #15: Cyclist/Triathlete with Persistent A-Fib)

Alan A., Richmond, Virginia; E-mail: adanet56(at)gmail.com

Alvin, Delray Beach, Florida; E-mail: adrelich(at)bellsouth.net (Medicines keep Alvin A-Fib free)

Bob, Palm Coast, Florida (Veteran); E-mail: bobwhitehurst(at)gmail.com

Jay, Atlanta, Georgia; E-mail: jjteresi(at)yahoo.com (see his personal experience story, #55: In A-Fib at age 25!—A guy deals with the anxiety. A-Fib free after two ablations at Texas Cardiac Arrhythmia Institute)

Michael, Raleigh, North Carolina; E-mail: halfmooncorp(at)hotmail.com

Sheri, Winchester, Virginia; E-mail: sheriweber47(at)yahoo.com. (Cox-Maze IV experience) Read Sheri’s story in our book Beat Your A-Fib: The Essential Guide to Finding Your Cure, A Life on Meds Wasn’t Good Enough—Selects a Minimally Invasive Cox-Maze IV, p. 105.

Stuart, Virginia; E-mail: ssutphin(at)vt.edu

Northwest, USA
Alaska, Idaho, Montana, Oregon, Washington, Wyoming

Dick, Walla Walla, Washington. (E-mail: NG; needs updating as of 6-29-2014) (had both a Mini-Maze, then Catheter Ablation) (see his personal experience story, #62)

Karl, Salem, Oregon. Telephone: (503) 949-1162—Karl prefers to talk over the phone after 4:00 pm PST. E-mail: karlgranat(at)msn.com. (Two ablations by Dr. Natale in San Francisco).

Todd F., Spokane, Washington. Email: cco2coug(at)gmail.com. (Three failed ablations in the Pacific Northwest, then successful ablation by Dr. Natale in San Francisco.)

Southwest, USA
Arizona, California, Colorado, Nevada, New Mexico, Utah

Beverly, Los Angeles, CA; E-mail: beverlywelsh(at)msn.com (expertise: Living with A-Fib, Drug Therapies)

Ed N., Monterey Peninsula, CA; E-mail: trigeeked(at)gmail.com

Joyce, Los Angeles, CA; E-mail: JET7700(at)aol.com (Joyce coordinates our Southern CA A-Fib Support Group)

Kathy, Oceanside, CA. E-mail: Katbuda(at)aol.com

Michele, Salt Lake City, Utah; Email: mstraube(at)mindspring.com (see her personal experience story, #42: Cured After 30 Years in A-Fib by Dr. Marrouche)

Monique, Irvine, CA; E-mail: mvancansun(at)yahoo.com (expertise: Women who exercise )

Bob Muenckler, Santa Monica, CA; By phone only 310-613-5413 (Expect an enthusiastic but long conversation. If you leave Bob your phone number, he will call you back on his own dime.) (expertise: Dr. Sirak’s Five-Box Thoracoscopic operation).

Mike Jones, Redding (Sacramento Valley), CA; E-mail: mjonesrdg(at)gmail.com (expertise: A-Fib drugs, amiodarone, Finding the Right Doctor) (see his personal experience story, #64: Triathlete 18 years in A-Fib, on Amiodarone for eight years—then A-Fib free after ablation by Dr. Padriag O’Neill)

Emmett Finch (The Malibu Poet; read his poem “A-Fib’s-Demise“): Malibu, CA; Phone: 310-457-7895. E-mail: sunbro(at)mindspring.com. Expertise: Watchman Device, AV Node Ablation and Pacemaker. (Read Emmett’s story “40-Year Battle With A-Fib Includes AV Node Ablation With Pacemaker” on page 161 of Beat Your A-Fib. Emmett celebrated his 94th birthday in 2015.)

Hawaii, USA

Joe L., Honolulu, Hawaii; E-mail: jleonardo98(at)yahoo.com

North Central, USA
Illinois, Iowa, Kansas, Michigan, Minnesota, Missouri, Nebraska, 
North Dakota, South Dakota, Wisconsin

Chris, Jackson, MI (South Central Michigan); Email: daddyzegar(at)gmail.com  (Expertise: young people with A-Fib);(see his personal experience story, #56: A-Fib Started at Age 23!—Ablation by Dr. Eric Good at Un. of Michigan)

Greg, Carbondale, Illinois; E-mail: ga2607(at)cba.siu.edu.  (see his personal experience story, #32: Not Necessary To Go To Top-Name A-Fib Centers To Have Excellent Care and Good Results)

Howard, Highland Park, Illinois; E-mail: howard.felix(at)comcast.net

Linda, Grand Junction, Michigan; E-mail: linda-seaman(at)btc-bci.com

Marilyn, Commerce Township, MI (near Detroit);  E-mail: nmshook(at)sbcglobal.net. (expertise: Pill-In-The-Pocket); (see her personal experience story, #25: Two Different “Pill-In-The-Pocket” Approaches—Both Turn to Catheter Ablation for a Cure)

Steven (17-year-old) & Steven’s Mother Sue (Teenager with A-Fib & Parent ready to help others), Michigan.  Email: suegaston(at)gmail.com.

Kathy R. Hollister, Missouri. (Expertise: Natural Remedies for A-Fib) Email: katheemarie77(at)yahoo.com. See Kathy’s personal experience story #73: A-Fib Success with Naturopathic Assistance—Over 10 Months A-Fib Free

 South Central, USA
Arkansas, Louisiana, Mississippi, Oklahoma, Texas

Steve P, Dallas, TX: Email: sjpully(at)yahoo.com (Expertise: A-Fib & Flutter Ablations, Finding the Best EPs, 20+ Years in A-Fib). Phone: 214-587-6133.

Mike M. Friendswood, TX. E-mail: mmmontz(at)aol.com. (Expertise: Living with A-Fib after Heart Surgeries and Years of Chronic A-Fib)

For more information about our A-Fib Support Volunteers and how to volunteer, see my article: Want to become a A-Fib Support Volunteer?’

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Return to A-Fib Support Volunteers

If you find any errors on this page, email us.  Last updated: Wednesday, June 15, 2016

DISCLAIMER: A-Fib.com Support Volunteers are not medical doctors and are not affiliated with any medical school or organization. Any communication with A-Fib.com Support Volunteers is not intended nor implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health professional prior to starting any new treatment or with any questions you may have regarding a medical condition. Nothing communicated by A-Fib.com Support Volunteers is intended to be for medical diagnosis or treatment. Their opinions are their own.

Editorial: “It’s All In Your Mind” Her MD Said

By Steve S. Ryan, PhD, publisher of A-Fib.com

As an A-Fib community we think we’ve come a long way in our understanding of A-Fib and how to treat it. But not everyone (read on).

In a recent email a woman in England described her horrendous A-Fib symptoms—palpitations, extreme fluttering, breathlessness, “absolute extreme fatigue.”

Then she told me her doctor told her that her breathlessness and exhaustion had nothing to do with her A-Fib, that these symptoms were all in her head, that she was over exaggerating.

Though she probably knew this already, I wrote back and explained to her:

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

Editorial: “It’s All In Your Mind” Her MD Said

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

A-Fib patients needs go beyond an up-to-date and informed health provider. When people email me, it’s often not just for the facts about A-Fib, but more for support, understanding and empathy. They need to know that they’re not alone in trying to deal with A-Fib.

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

Take Away: Won’t you share this message with someone who is also suffering from A-Fib? Reassure them, and let them know they are not alone.

A-Fib Online Discussion Groups and Resources

One-to-one support and online support groups can be very helpful to patients and others interested in A-Fib. First, it’s helpful to know you are not alone.

Our A-Fib Support Volunteers are just an email away

One-to-One, our A-Fib Support Volunteers are just an email away

Many, many others are dealing with Atrial Fibrillation. Second, the discussion with fellow patients can often benefit those just reading the discussion, perhaps offering a new perspective. But, don’t stay on the sideline, participate! Join in. You’ll feel better talking with others who know what you are dealing with.

These services are free. Some may require registration before you can post messages or even read the messages.

Each service is unique. Membership numbers vary greatly. Some offer useful databases of information. And while some are focused on a specific type of A-Fib, they often cover many subjects relevant to anyone with A-Fib.

• A-Fib Support Volunteers: One-to-One Support; Atrial Fibrillation: Resources for Patients: http://a-fib.com/a-fib-support-volunteers/
• AFIB Support Forum: http://health.groups.yahoo.com/group/AFIBsupport/
• A-fibcures Forum: http://health.groups.yahoo.com/group/A-fibcures/
• Atrial Fibrillation Association UK Forum: https://healthunlocked.com/afassociation
• Daily Strength Atrial Fibrillation Support Group: http://www.dailystrength.org/c/Atrial-Fibrillation-AFib/support-group
• Facebook Group Atrial Fibrillation Support Forum: https://www.facebook.com/groups/AtrialFibrillationSupportForum/?fref=ts
• Facebook Group “What Is Atrial Fibrillation?”: https://www.facebook.com/groups/28241296298/
• Lone Atrial Fibrillation Forum: 
http://www.afibbers.org/toboards.htm
• StopAfib Discussion Forum: http://forum.stopafib.org

Do you have a favorite discussion group not listed here? Email us, so we can add it to our list.

Warning:  If you join any of these groups, you may not want to use your real name, address, etc. Insurance companies, employers, mortgage lenders, credit card companies, etc. may ‘Google’ you and find you belong to an Atrial Fibrillation site or have A-Fib. This may influence their decision-making about you.

If you find any errors on this page, email us. ♥ Last updated: Tuesday, October 6, 2015

A-Fib Support Volunteers: Just an Email Away

  Our A-Fib Support Volunteers: Just an Email Away

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

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

Your first experiences with A-Fib has changed your life in a number of ways. In addition to the emotional impact you may have had after being diagnosed, you now have important decisions to make about your treatment and about how you may need to adjust to life with your A-Fib symptoms and new medications.

It helps to have someone who has “been there” and is there for you now.

Our A-Fib Support Volunteers

Having someone you can turn to for advice, emotional support, and a sense of hope that you can be cured, may bring you peace of mind. (Click on title to jump to that list.)

List of U.S. Volunteers
List of Worldwide Volunteers

Our A-Fib Positive Thoughts/Prayer Group

At A-Fib.com we believe—in healing through hope, belief, prayer—and in the power of positive thoughts. Learn more at The Healing Power of Hope, Belief and Expectations

Got A-Fib - Revised Oct 6 2015 550 deep pix wide at 96 resBlessed by our World-Wide Volunteers

We are blessed to have many generous people who have volunteered to help others get through their A-Fib ordeal.

Most A-Fib Support Volunteers are not medical personnel. They can’t be expected to have every medical A-Fib fact at their fingertips. They are not paid. They come from widely different backgrounds. But you can be sure they care about you and understand what you are going through.

These volunteers have gone through a lot while seeking their A-Fib cure. They have been helped along the way and want to return the favor. They offer you support and hope through exchanging emails and sharing their stories. (Not all Support Volunteers are ‘cured’ of their A-Fib, but have found the best outcome for their situation.) Some have special skills which are listed in parentheses.

For more information about our A-Fib Support Volunteers and how to volunteer, see my article: ‘Want to become a A-Fib Support Volunteer?’

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Return to Resources and Links

If you find any errors on this page, email us. ♥ Last updated: Monday, August 8, 2016

DISCLAIMER: A-Fib.com Support Volunteers are not medical doctors and are not affiliated with any medical school or organization. Any communication with A-Fib.com Support Volunteers is not intended nor implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health professional prior to starting any new treatment or with any questions you may have regarding a medical condition. Nothing communicated by A-Fib.com Support Volunteers is intended to be for medical diagnosis or treatment. Their opinions are their own.

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