Doctors & patients are saying about 'A-Fib.com'...
"A-Fib.com is a great web site for patients, that is unequaled by anything else out there."
Dr. Douglas L. Packer, MD, FHRS, Mayo Clinic, Rochester, MN
"Jill and I put you and your work in our prayers every night. What you do to help people through this [A-Fib] process is really incredible."
Jill and Steve Douglas, East Troy, WI
“I really appreciate all the information on your website as it allows me to be a better informed patient and to know what questions to ask my EP.
Faye Spencer, Boise, ID, April 2017
“I think your site has helped a lot of patients.”Dr. Hugh G. Calkins, MD Johns Hopkins,
Baltimore, MD
Our A-Fib Positive Thought/Prayer Group: Coordinator Needed
At A-Fib.com we believe in healing through hope, belief, prayer—and in the power of positive thoughts. To support our A-Fib.com readers in seeking their cure (or best outcome), we offer the assistance of our dedicated A-Fib Positive Thought/Prayer Group. This support group is just an email away.
Once we receive your request for prayer or positive thoughts, we ask our group of volunteers to support you as requested.
I consider this work a call from God and a special vocation.
My First-Hand Experience with our Positive Thoughts/Prayer Group
Instead of just writing about this phenomenon, I experienced it myself when I asked the group for positive thoughts & prayers for the success of my upcoming intestinal surgery on March 28, 2018.
So may people emailed me such heartfelt support it brought tears to my eyes. It was very encouraging to know I wasn’t alone, that so many cared about me. Can’t thank you all enough! (BTW: My surgery was successful.)
Many Thanks to Our Coordinator
For years, Barbara Cogburn has coordinated our A-Fib Positive Thought/Prayer Group, but has recently stepped down. We can’t thank her enough for this service to others with A-Fib.
Think of how many people Barbara has helped over the years, who have benefited from her warm, understanding emails and encouragement.
We Need a New Coordinator
Could you take on the coordinator role of our Positive Thought/Prayer Group?
You can have a direct impact in the lives of other A-Fib patients and their families.
How it Works: A-Fib patients would email you with their requests. You would respond with encouragement and assurance of the group’s support. Then you’d email their request to our group of volunteers.
For the details of what’s involved, with questions, etc., contact me at ssryan@a-fib.com.
Our Patient-to-Patient Resources: Help from Others with Atrial Fibrillation
To help you cope with your Atrial Fibrillation, we offer you the resources to educate yourself about A-Fib and your treatment options, and to arm yourself with the skills to navigate a path to a life without Atrial Fibrillation.
Our Personal A-Fib stories of Hope and Courage and our A-Fib Support Volunteers are two resources to help answer your questions and bolster your resolve to Seek Your A-Fib Cure (or best outcome for you).
A-Fib Patient Stories of Hope, Courage and Lessons Learned
Your first experiences with Atrial Fibrillation have changed your life in a number of ways: dealing with your A-Fib symptoms, the emotional toll as well, and the impact on your family.
It’s encouraging to read how someone else has dealt with their A-Fib. In our 99+ Personal A-Fib Stories of Hope, A-Fib patients tell their stories to encourage and offer you hope. (The first story is Steve Ryan’s in 1998). Many writers have included their email address if you want to contact them directly. To browse our patient experiences, go to Personal A-Fib Stories of Hope and Courage.
Offering Hope: 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. Our A-Fib Support 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 answer questions and offer you encouragement through exchanging emails and sharing their stories.
Our volunteer listings are organized by geographic locations, within the U. S. and internationally by country and/or region. Learn how to contact our A-Fib Support Volunteers.
Readers post their stories and volunteer to help you to
Seek your Cure.
Share Your Insights! A-Fib.com Guest Contributors Welcome
There are many ways you can participate at A-Fib.com. You can join our Support Volunteers who offer others hope and encouragement; Join our Positive Thoughts/Prayer group to help those who believe in the healing power of hope, belief and prayer; Share your Personal A-Fib story to inspire others…
Or, be a contributor and write about a topic you’re passionate about.
A-Fib.com Guest Contributors Welcome
A-Fib.com welcomes guest contributors
You don’t have to be an experienced or published writer. Just informed and passionate about a specific A-Fib topic or issue. Why not share your insights with our A-Fib.com readers? Get your byline and photo on our website. We welcome guest contributors!
All opinions are welcome. You don’t have to agree with the publisher’s point-of-view. For example, see the editorial by Ken Close, Editorial: A-Fib.com Bias in Coverage of Mini-Maze?
You can see examples of articles by other guest writers. Check out an article by Lyn Haye, Obesity in Young Women Doubles Chances of Developing A-Fib and a patient review by Frances Koepnick’s “Patient Review: AliveCor Heart Monitor for SmartPhones“.
Is This Your Time to Contribute to A-Fib.com?
Whatever you choose to write about, long or short, the length and style is up to you. We’ll support you all the way (and even supply graphics if needed.)
If you’re interested in being an A-Fib.com guest contributor or just have questions about it, send us an email. I encourage you to do it TODAY!
It Takes Time to Find the Right Treatment Plan for You: Learn all Your Options
A-Fib begets A-Fib. The longer you have A-Fib, the greater the risk of your A-Fib episodes becoming more frequent and longer, often leading to continuous A-Fib. (However, some people never progress to more serious A-Fib stages.)
Most Atrial Fibrillation patients should look beyond the typical antiarrhythmic drug therapy. These drugs don’t cure A-Fib but merely keep it at bay. According to Drs. Irina Savelieva and John Camm of St. George’s University of London:
“The plethora of antiarrhythmic drugs currently available for the treatment of A-Fib is a reflection that none is wholly satisfactory, each having limited efficacy combined with poor safety and tolerability.”
Educate Yourself: Learn All Your Options
A-Fib is not a “one-size fits all” type of disease. You need a personalized treatment plan. To begin, first educate yourself about Atrial Fibrillation, and then review all your treatment options. See Overview of A-Fib, Find the Right Doctor for You and Treatments for Atrial Fibrillation. A-Fib treatments include both short-term and long-term approaches aimed at controlling or eliminating the abnormal heart rhythm associated with A-Fib.
Next, you can move on to the guidelines we’ve posted: Which of the A-Fib Treatment Options is Best for Me? You are then prepared to discuss these treatment options with your doctor. Keep in mind, this should be a ‘team effort’, a decision you and your doctor will make together.
Build a Support System: We Can Help
You are not alone. Many, many others with A-Fib have been where you are now and are ready to share their experiences and insights.
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. Our support volunteers offer you one-to-one support through exchanging emails and sharing their stories. To learn more, go to our page A-Fib.com’s A-Fib Support Volunteers.
Positive Thoughts/Prayer Group: At A-Fib.com we believe in healing through hope, belief, prayer and in the power of positive thoughts. To learn more about our group and how to send in your request, go to our A-Fib.com Positive Thoughts/Prayer Group.
Build Your A-Fib Treatment Plan: Know All Your Options
My First-Hand Experience with our Positive Thoughts/Prayer Group
One of the best things we’ve ever done at A-Fib.com is setting up the Positive Thoughts/Prayer support group. When you have an important treatment decision or an upcoming procedure or surgery, you can contact our volunteer group and ask for their support.
My Personal Experience: Prayer and Positive Thoughts
At A-Fib.com, we believe in the healing power of prayer and of positive thoughts!
Instead of just writing about this phenomenon, I experienced it myself when I asked the group for positive thoughts & prayers for the success of my upcoming intestinal surgery on March 28, 2018.
So may people emailed me such heartfelt support it brought tears to my eyes. It was very encouraging to know I wasn’t alone, that so many cared about me. Can’t thank you all enough! (BTW: My post-op is going well.)
Are You Seeking Guidance from a Higher Power?
Are you in need of prayer? Positive thoughts? To learn how to send in your request, go to our A-Fib.com Positive Thoughts/Prayer Group.
Additional Reading
The Anatomy of Hope: How People Prevail in the Face of Illness
by Jerome E. Groopman. Written by an oncologist and citing actual patient cases (mostly cancer), Dr. Groopman explores the role of hope in fighting disease and healing. Top scientists are interviewed who study the biological link between emotion and biological responses; the most relevant studies are reviewed.
The author shows how hope, belief and expectations can alter the course of our lives, and even of our physical body. HOPE works! (Read my review on Amazon.com.)
Listen to an audio interview with The Anatomy of Hope author, Dr. Groopman on NPR’s Fresh Air program (recorded Sept. 2004; 20 min.)
Ronny, Our Newest A-Fib Support Volunteer—Not Cured—Yet!
We welcome Ronny Sullivan, a new A-Fib Support Volunteer, who’s from West Seattle, WA, USA. Our newest recruit is not cured and is still fighting to fix his A-Fib.
His history with Atrial Fibrillation spans 10-15 years and includes two failed ablations, a stroke, and several cardioversions. Along the way, he’s done extensive research about his condition.
“I know how scary A-Fib is at first, and how much mis-information is out there.
Ronny Sullivan, West Seattle, WA
I am still not cured, but have had recent success with Betapace (sotalol) and deep breathing. I will have another ablation at some point, probably with Dr. Natale.”
Ronny has gone through a lot while seeking his A-Fib cure. He wants to help others who are also dealing with Atrial Fibrillation. He welcomes your email (ronnysullivan(at)yahoo.com) or you can phone him at (206) 396-7682 (Pacific time zone).
Our World-Wide Network of Volunteers
Our A-Fib Support Volunteers offer their support and hope through exchanging emails and sharing their stories. We invite you to learn more about our world-wide network and browse our list of volunteers. Go to A-Fib Support Volunteers.
Ronny: I’m glad to have you with us, and thanks for volunteering to help others with Atrial Fibrillation.
“Steve’s website provides a central resource to which we should all contribute with information about our own experiences where we think they can help others… .” Neville Greenwell, Perth, Western Australia
Encourage Another with A-Fib—Become an A-Fib Support Volunteer!
There are many ways you can participate at A-Fib.com. One important role is being an A-Fib Support Volunteer— someone who offers another A-Fib patient hope and encouragement.
Atrial Fibrillation changes your life. When diagnosed, it helps to talk with someone who has (or had) A-Fib. That’s the role of our A-Fib Support Volunteers—someone who has “been there” and is there for other patients. These volunteers have been helped along the way and want to return the favor.
We Offer One-to-One Support
We’re not like most A-Fib discussion groups and other online support groups. Our Volunteers offer one-to-one support and hope by exchanging emails, being a sounding board and sharing their own A-Fib story.
We are blessed to have many generous people from all corners of the globe who have volunteered to help others get through their A-Fib ordeal. Most A-Fib Support Volunteers are not medical personnel They are not paid. They come from widely different backgrounds.
Note: Not all Support Volunteers are ‘cured’ of their A-Fib, but have found the best outcome for themselves.
How About You? Want to be an A-Fib Support Volunteer?
You can help someone struggling with A-Fib, offer emotional support and encourage another patient to seek their cure.
If this interests you, browse the A-Fib Support Volunteers page and see my article: ‘Want to become a A-Fib Support Volunteer?’
A-Fib Positive Thoughts/Prayer Group: Another Support Group. To learn about our A-Fib Positive Thoughts/Prayer Group and how to send in your request, go to our A-Fib.com Positive Thoughts/Prayer Group.
Seeking Support: She Emailed Me After Her MD Said “It’s All In Your Mind”
I was reminded recently about an email I received from a woman in England. She described her horrendous A-Fib symptoms—palpitations, extreme fluttering, breathlessness and “absolute extreme fatigue.”
While her symptoms were troubling, the next part of her email really shocked me!
Her doctor said her breathlessness and exhaustion had nothing to do with her A-Fib. That these symptoms were all in her head. That she was exaggerating.
As an A-Fib community we think we’ve come a long way in our understanding of Atrial Fibrillation and how to treat it. Many of us have—but not everyone.
And what’s most surprising about this story is that her doctor was a woman! (It’s usually males who tell females that’s its all in their mind.) Go figure!?
“It’s All In Your Mind” her MD said.
Though the author of the email probably knew this already, I wrote back and explained to her:
”The symptoms you describe usually come along with Atrial Fibrillation (A-Fib). Fluttering, palpitations, feeling like your heart is going to jump out of your chest or that there are mice rolling bowling balls inside your heart―these are feelings most of us have who suffer from A-Fib.
You experience breathlessness and extreme fatigue because your heart isn’t pumping properly. Normally the upper part of your heart (the atria) squeeze blood down into the lower part (the ventricles) which then pump the blood to the rest of your body. But in A-Fib the upper part of your heart doesn’t squeeze down but instead quivers, vibrates, fibrillates. You lose 15%-30% of your normal pumping volume.
If you could look inside your heart, it would look like a plate of shaking Jell-O. Of course you feel breathlessness, fatigue, dizziness, etc.!”
Patient’s Want More Than Just the Facts
A-Fib patients need more than just an up-to-date, informed health provider. When people email me, they’re often not just seeking the facts about A-Fib. They’re also seeking support, understanding and empathy.
They need to know that they’re not alone in trying to deal with A-Fib.
Our A-Fib Support Volunteers
Your health provider many not offer the support you need to cope with your A-Fib.
I often tell them about our A-Fib Support Volunteers who are just an email away. We are blessed to have many generous people who have volunteered to help others get through their A-Fib ordeal. They’re fellow A-Fib patients or former patients who are there to listen and offer their support to others suffering from A-Fib. (Visit our A-Fib Support Volunteers page for more info and list of volunteers from around the world.)
Will You Share This Message?
Won’t you share this message with someone who is also suffering from A-Fib? Reassure them, and let them know they are not alone. (And refer them to our A-Fib Support Volunteers page for more info.)
Our Worldwide A-Fib Support Volunteers
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. (We are sad to announce that Nancy Thompson, who for many years volunteered as an excellent coordinator of the A-Fib Support Volunteers, passed away. We really miss her.)
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 D. L.
Ira L., 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 B., Sydney, Australia; E-mail: vagalman(at)optusnet.com.au
Roy S., Adelaide, Australia; E-mail: roys1(at)tpg.com.au
Warren W., 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, Canada; E-mail: stoneabba007(at)gmail.com
WESTERN CANADA
Darrell B., 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 J., Johannesburg, Cape Town, South Africa; E-mail: leon(at)mbanet.co.za
SOUTHEAST ASIA
Max J.
Lee A., Malaysia; E-mail: amirlee2(at)yahoo.com
Max J., 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”)
JAPAN
Susan H., Iwakuni, Japan; Email katmaii1(at)aol.com. Ablation at the Cleveland Clinic May 7, 2020.
“I began having symptoms of AFib just prior to moving to Japan in September 2019. I have always had PVCs and an “irritable” heart, and I think the stress and anxiety just pushed me over the edge. In April I flew back to the States to seek treatment and had an ablation at the Cleveland Clinic on May 7th. I’m back in Japan in quarantine right now. Still experiencing PVCs but otherwise well.”
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: Saturday, August 22, 2020
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.
