We often hear atrial fibrillation patients say that they wish their doctors could experience afib just once so they might better understand what we afib patients go through. Dr. John Mandrola, a Louisville-based electrophysiologist and a bike racer, just shared his story of experiencing atrial fibrillation and how it made him a more empathic doctor.
Read: Atrial Fibrillation Strikes an Electrophysiologist
If you’re looking for a group of folks who have the kind of atrial fibrillation that you do, check out the StopAfib.org discussion forums. If you are a young afibber, or have valvular afib or hypertrophic cardiomyopathy and afib, or if you’re interested in afib and exercise, afib and pregnancy, afib and sleep apnea, or other special topics, join a group to discuss your common concerns.
If you’re looking for a local support group, you’ll find those, too. We have, or are starting up, local support group discussions for:
If you’d like to start a group for your locale, just let us know.
Find out more at: StopAfib.org Discussion Forums Provide Special Interest Topics and Local Support Groups
To help raise awareness of afib for Atrial Fibrillation Awareness Month, Jennifer Leggio (@mediaphyter), well-known ZDNet Social Business blogger, shared what it’s like for a young person to live with afib, having been diagnosed with it in her twenties.
Read: From the heart, about the heart: Living with afib
Pat Robertson, Founder and Chairman of the Christian Broadcasting Network (CBN), recently had the Convergent Procedure for his atrial fibrillation, which in this case was accompanied by removal of his left atrial appendage.
The Convergent Procedure for atrial fibrillation involves radio-frequency surgery followed by a radio-frequency catheter ablation, both of which are done in a special EP Lab outfitted for the dual-purpose of performing surgery and catheter ablation.
Dr. Andy C. Kiser, cardiothoracic surgeon, did Mr. Robertson’s surgery. That was followed immediately by Dr. Mark Landers, electrophysiologist, doing the catheter ablation. The surgery took place August 18 at FirstHealth Moore Regional Hospital in Pinehurst, NC.
I had the distinct pleasure of observing Dr. Kiser and Dr. Landers do the same Convergent Procedure on another person the prior week. While Dr. Kiser doesn’t normally remove the left atrial appendage — I specifically asked him that question — I understand that in this case it was deemed appropriate because Mr. Robertson’s left atrial appendage was enlarged. That required moving him from the EP Lab to a full Operating Suite, and thus doubled the normal procedure time from the usual 4–6 hours to 10 hours.
More about the Convergent Procedure for Atrial Fibrillation (including the Ex-maze)
When I had my minimally-invasive procedure (surgery) for atrial fibrillation four years ago, my left atrial appendage was also removed. Doing so removes the majority of the stroke risk due to atrial fibrillation as the left atrial appendage is the source of at least 90% of the afib-related blood clots that cause stroke.
Mr. Robertson had been suffering from atrial fibrillation for several years. I, too, know personally the toll that atrial fibrillation takes. After surviving blood clots and a near-stroke during my first afib episode, I lived in constant fear that the next one would bring on a deadly stroke. In fact, I felt like I was “a stroke walking around waiting to happen.” Once cured of this irregular heartbeat by surgery, I couldn’t stand on the sidelines and watch others suffer so I started StopAfib.org to help those who were living the nightmare of atrial fibrillation.
Today, September 1, 2009, StopAfib.org celebrates the launch of Atrial Fibrillation Month. This marks our third year of celebrating Afib Month to raise awareness of atrial fibrillation. Afib is an expensive and life-threatening irregular heartbeat that is a common cause of stroke.
I have been pushing like crazy to find ways to raise awareness of afib for Atrial Fibrillation Month so that we can get people diagnosed and treated and thus decrease their risk of afib-related stroke. That is one of our goals, not just in the U.S., but worldwide.
More about Atrial Fibrillation Month
As I focused on how to get the word out even more than last year, my prayers were answered. All of the media attention around Mr. Robertson’s procedure is raising awareness of afib.
Thank you, Mr. Robertson, for bringing attention to atrial fibrillation. Thank you for all the lives that you will save.
For more info:
UPDATED 9-9-09: Dr. Kiser and Dr. Landers were featured on Pat Robertson’s The 700 Club on Tuesday, September 8 talking about the convergent procedure that they recently did on Mr. Robertson.
Watch the video…
We recently mentioned that StopAfib.org is a proud member of AF StatTM: A Call to Action for Atrial Fibrillation. It’s exciting to have 24 organizations, along with Dr. Eric Prystowsky, Senator Bill Frist, MD, and NBA Hall of Famer Jerry West, working together to raise afib awareness.
To learn more: About AF Stat and see the newly-posted profiles of afib patients Jerry West and Mellanie True Hills
In addition, you can help raise awareness of afib by contacting your Congressman or Congresswoman. You will find details here:
Ask Your U.S. Representative to Support Atrial Fibrillation Awareness Month
The latest issue of Success magazine talks about Mellanie True Hills, founder of StopAfib.org, and her story of living with atrial fibrillation and having surgery to cure atrial fibrillation as well as launching StopAfib.org to save lives.
USA Weekend HealthSmart edition features a story about Mellanie True Hills, founder of StopAfib.org, in which she talks about living with atrial fibrillation and communicating electronically with her surgeon before and after her mini-maze surgery.
Read: USA Weekend Talks About Atrial Fibrillation and Mini-Maze Surgery…
What are your thoughts on the role that electronic communications should play in your communications with your doctors? Please share your comments here at the Atrial Fibrillation Blog.
Mellanie True Hills and StopAfib.org were included in the latest issue of More magazine in Retirement for the Restless by Lisa Belkin of the NYTimes.
