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
Vote—It’s Good for Your A-Fib Health and Our Healthcare System!
Atrial Fibrillation patients, did you know voting improves your health? There is a high level of correlation between people who are engaged in voting and better health outcomes, according to Adam Fox, deputy director of the Colorado Consumer Health Initiative.
Daniel Dawes, JD of Morehouse School of Medicine, agrees and points to the Health & Democracy Index. It shows that when communities vote, they influence policy decisions that have a big effect on their health. For many people in your community, voting outcomes can mean the difference between life and death, health, and sickness. The crucial act of voting immeasurably affects our lives, including our personal health and the overall health of our community.
Why Don’t People Vote
It’s estimated that at least 51 million eligible U.S. citizens aren’t registered to vote (24%).
Increasing voter registrations is a fundamental way to improve our healthcare system.
The main reason? Not being registered.
Increasing voter registrations is a fundamental way to improve our healthcare system.
Far and away the most effective way to register new voters is when they visit their local motor vehicles department (DMV). Of new voter registrations, the DMV is the most popular (40%), second is online registration (30%).
Automatic Voter Registration?
What about people who don’t drive? Or the young, or students who don’t have access or need a vehicle or are disabled?
By Jan. 2022, 22 states have implemented automatic voter registration.
One way to register these people would be automatic voter registration at Medicare and other public assistant and disability programs like food stamps.
As of January 2022, 22 states and Washington, D.C., have enacted or implemented automatic voter registration.
A-Fib Doctors: Encourage Your Patients to Register and Vote
How doctors can help.
If you are a doctor treating an A-Fib patient, go beyond the exam room. Patients look to you for advice on how to live a more healthful life. Talk to them about their civic health and engagement, and how registering and voting will improve their health.
For help to get your patients registered, go to Vot-er.org, an organization that connects healthcare institutions and clinicians with voter registration tools.
The Easy Way to Register to Vote
It’s easy to register.
• Visit Vote.gov. Enter the state you live in, and the site can help you register online (available for 40 states plus the District of Columbia);
• An alternative is offered by Register2Vote. Using both online and US mail, they offer a simple tool to confirm, update, and register to vote. No printers or stamps required. For more info, go to Frequently Asked Questions
Why to Register and Vote
It doesn’t always feel that our vote makes a difference. But voting gives us a voice—especially in local and state elections. When you vote, you select individuals to make decisions about the community you live in on your behalf.
Are you not sure if you are registered to vote? Or do you need to change your registration? Go to https://www.usa.gov/voter-registration
Editorial: Elderly With A-Fib and Dementia Still Given Blood Thinners
In a disturbing article about our elderly living in nursing homes, a third of older patients with A-Fib and severe dementia were still given anticoagulants during the last 6 months of their lives. This is according to analysis of patients Medicare data.
According to study authors, Dr. Gregory Ouellet of Yale University and his colleagues, “We were surprised that patients with markers of very high short-term mortality—for example, difficulty swallowing and weight loss—were more likely to be receiving anticoagulants…This is counterintuitive since the potential benefits of these medications are the lowest in this group.”
“These findings underscore the fact that, while practice guidelines contain a well-defined threshold for starting anticoagulation for AF, there is no clear standard for stopping it,” Dr. Ouellet and colleagues wrote in their article.
Dr. Ouellet unexpectedly found that greater bleeding risk (their ATRIA score) was also associated with greater odds of anticoagulant use. The greater their risk of bleeding, the more likely these elderly A-Fib patients were to be on anticoagulants.
Improper use of anticoagulants can cause intracranial hemorrhage, bruising and excessive bleeding.
Nursing home length of stay was more strongly associated with anticoagulant use instead of the patients’ stroke risk (CHA2DS2-VASc score).
In their study, Ouellet and co-authors used Medicare data to evaluate 15,217 nursing home residents with atrial fibrillation and advanced dementia who had at least moderate stroke risk (CHA2DS2-VASc score of 2 or more) and who died from 2014 through 2017.
That Makes No Sense! Is This the Way We Treat Our Elderly?
I was astounded to read this analysis found the greater their risk of bleeding, the more likely these elderly A-Fib patients were to be on anticoagulants. This improper use of anticoagulants can cause intracranial hemorrhage, bruising and excessive bleeding.
Nursing home patients with greater risk of bleeding should not be prescribed anticoagulants, but they were.
What this finding says is that many the nursing homes weren’t all that concerned about actual stroke risk when prescribing anticoagulants.
The most important treatment for elderly patients with severe dementia and limited life expectance is, as much as possible, to help their quality of life, to let them die in peace and as much comfort as possible. … Continue reading this book review..->
Inherited A-Fib: Warn all Your Immediate Family Members
We now know that Atrial Fibrillation runs in families. Research has found that if any blood relative has A-Fib, other family members have a 40% increased risk of also developing A-Fib. And the younger that family member was when they got A-Fib, the more likely other blood relatives will develop A-Fib.
If you have A-Fib, you must warn all your immediate family members that they have a good chance of getting it also.
Even though we don’t know yet how to definitively prevent A-Fib, there are some precautions your family members can take:
• Avoid binge alcohol drinking and heavy partying.
• Avoid antihistamines and anything that can stimulate or trigger A-Fib. (see A-Fib Triggers) (This doesn’t necessarily include coffee. Some research indicates coffee may prevent A-Fib.)
• Be more attentive to overall health. Obesity, for example, is often a contributing factor to A-Fib. Sleep apnea is known to lead to A-Fib.
• Check for deficiencies in essential minerals (electrolytes) like magnesium or potassium. Are calcium levels too high (which may be a trigger for A-Fib)?
• Avoid or learn to cope with stress (not always possible).
There is a tendency in all of us to not tell others if we are ill, perhaps because we perceive it as a weakness in ourselves. But no one should be ashamed of having A-Fib. Most likely it isn’t anything we brought on ourselves. It’s genetic! It’s nobody’s fault!
We are not being fair to our family members by not telling them about our A-Fib. Don’t just mention it in passing. This applies particularly to your brothers and sisters. Sit down with them and tell them what A-Fib is like, and that they are at risk.
Any immediate blood relative must be warned. If you love your family, you owe it to them.
FREE REPORT: Answers to the “Top 10 Questions Families Ask about Atrial Fibrillation”
A-Fib can be a life altering disease―yet people with A-Fib don’t look sick. When a patient is diagnosed with Atrial Fibrillation, family members often struggle to understand what their loved one is going through.
This free report covers the most asked questions from family members. Read how to answer your family’s questions. Download ‘Top 10 Questions Families Ask about Atrial Fibrillation’.
Help Prevent and Cure Heart Rhythm Diseases–Support the LIRYC Institute
The LIRYC Institute of Bordeaux, France, is asking for the support of our A-Fib.com readers. This institute is headed by Professor Michel Haissaguerre, who along with cardiology teams at the University Hospital of Bordeaux, France, is responsible for curing my A-Fib in 1998.
The LIRYC Institute: Entirely Dedicated to Heart Rhythm Disorders
Heart rhythm disorders affect millions of people worldwide and account for 30% of all cardiovascular disease, which is the leading cause of death in the world.
The LIRYC Institute is the only research, care, innovation and teaching Institute fully dedicated to heart rhythm disorders (atrial fibrillation, ventricular fibrillation and heart failure) arising from compromised electrical activity within the heart. It was established ten years ago in France to seek solutions to this major public health.
The Institute espouses a focused multi-disciplinary approach to understanding and treating these disorders. So far, this international team of experts has helped 400,000 patients worldwide suffering from atrial fibrillation. (Including Steve Ryan)
LIRYC Innovations
Entirely dedicated to heart rhythm disorders, LIRYC has chosen to focus on four distinct but interrelated objectives:
♥ research to better understand the mechanisms underlying the disorders;
♥ innovation to invent and develop the therapies of the future;
♥ patient care to continue to improve patient management thus reducing morbidity and mortality rates;
♥ training and education to promote and promulgate best practices for physicians and institutions around the world.
LIRYC Institute Capital Campaign: Supports the Prevention and Cure of Heart Rhythm Diseases
In 2020, LIRYC Institute launched a ten-million-euro capital campaign for the purpose of continuing and broadening the fight on the ravages caused by heart rhythm disorders.
Funds raised will be applied to underwriting new research projects and to the purchase of new technology as well as supporting educational and training programs for medical professionals across the globe.
Thanks to the generosity of donors, 35% of the goal has already achieved!
Consider Making a Donation to Support the LIRYC Effort
If you would like to help continue the fight to save lives lost to heart rhythm disorders, you can make a donation via the Friends of the LIRYC Foundation or email LIRYC directly at adele.lasne@ihu-liryc.fr or telephone +33 (0)5 35 38 19 97.
To read the LIRYC Mission and Key Areas of Focus, visit the LIRYC site (this is the English version)
You can also join the LIRYC community on Facebook and LinkedIn.
VIDEO: Mission of the LIRYC Institute (1:15)
Conflicts of Interest—Influencing Doctors for the Price of a Meal
In a 2016 JAMA Internal Medicine report, the authors compared meal payments to doctors with the drugs they prescribed to Medicare patients.
Not surprisingly, they found that physicians who accept free meals from a drug company are more likely to prescribe that company’s brand name drugs rather than cheaper (and usually more proven) generic drugs. This study only focused on physicians who received meals.
Even doctors who accepted only one free meal were more likely to prescribe the brand name drug. Doctors who accepted four or more meals were far more likely to prescribe brand name drugs than doctors who accepted no meals. Furthermore, doctors who accepted more expensive meals prescribed more brand name drugs.
Steer Clear of Conflicts of Interest
Studies have found that when there is a conflict of interest, it is almost impossible for even well-meaning people to see things objectively.
Dr. Dan Ariely of Duke University described how, if a doctor must choose between two procedures, they are likely to pick the one that has the better outcome for their bottom line (i.e. financial benefit).
“That doesn’t mean the doctor is unethical…it just means he is human. We truly seem to not realize how corrosive conflicts of interest are to honesty and objectivity.”
He advocates that we steer clear of people and organizations with conflicts of interest “because it does not appear to be possible to overcome conflicts of interest.”
When to be Suspicious of Doctors
Doctors are only human. They may not realize a conflict of interest is affecting their recommendations. So be suspicious if your doctor tells you:
• to take an expensive new drug
• to just “live with your A-Fib”
• insists that catheter ablation is too dangerous or unproven
• that A-Fib can’t be cured
• that you have to take drugs for the rest of your life
If this happens to you, RUN, DON’T WALK and get a second opinion (and even a third opinion).
In today’s world, you have to do your own due diligence. You know what makes sense and what doesn’t.
For more, see my article: EP’s Million Dollar Club—Are Payments to Doctors Buying Influence?\
A-Fib Patients: How Does Your Doctor Talk to You?
I recall an email sent to me by a woman from England who described her horrendous A-Fib symptoms—palpitations, extreme fluttering, breathlessness, “absolute extreme fatigue.” She recalled how the doctor said her symptoms had nothing to do with A-Fib, that the symptoms were all in her head, and that she was exaggerating her breathlessness and exhaustion.
Wow! First, I reassured her that her symptoms are very real for many A-Fib patients. I then suggested she change doctors. (I also recommended she contact our A-Fib Support Volunteers.)
How’s the Rapport With Your Doctor?
There’s an insightful article in the Journal of Cardiovascular Electrophysiology (I’d like to send a copy to her doctor) “How doctors can provide better treatment by understanding the hearts―and minds―of AF patients.“
In brief, it’s a Top 10 list: 5 things A-Fib patients do not want to hear from their doctors and 5 things they do want to hear. (Go to the journal article.)
Five Things A-Fib Patients Do Not Want To Hear
Several research studies tell us that some doctors underestimate the impact Atrial Fibrillation has on a patient’s quality of life. Many doctors treat A-Fib as a benign heart ailment. But patients report how A-Fib can wreak havoc in their lives.
Responding to a survey, A-Fib patients said they do not want their healthcare providers to say:
1. “A-Fib won’t kill you.”
2. “Just get on with your life and stop thinking about your A-Fib.”
3. “Stay off the Internet and only listen to me.”
4. “I’ll choose your treatment, not you.”
5. “You’re just a hysterical female.”
Did anything on this list sound (or feel) familiar to you?
If your doctor is condescending or dismisses your concerns, you’re getting poor care. If a doctor is too busy to talk with you and answer your concerns, he’s probably too busy to take care of you properly.
Like the patient from England, it may be time for you to change doctors.
Five Things A-Fib Patients Do Want To Hear
Those doctors who recognize the serious effects atrial fibrillation can have on patients will foster meaningful and productive partnerships with their patients. From the same survey, here are five things A-Fib patients do want their healthcare providers to say:
1. “I respect you and will listen.”
2. “I want to be sure you understand.”
3. “Let’s customize a treatment that works with your lifestyle.”
4. “I understand your values and preferences.”
5. “Here are some resources about A-Fib.”
Do the comments on this second list sound like your doctor?
When your doctor respects you and listens to you, you’re more likely to collaborate on a treatment plan tailored to you and your treatment goals.
If you don’t have this kind of rapport with your current doctor(s), it’s worth looking elsewhere for a new doctor (even if they’re considered “the best” in their field).
Changing Doctors Can Be Scary: We Can Help
As a researcher in doctor-patient communication, Robin DiMatteo, of U. of Calif.- Riverside, says of changing doctors: ”I really think it’s a fear of the unknown. But if the doctor isn’t supporting your healing or health, you should go.”
At A-Fib.com, we can help you. First, learn more about how to Find The Right Doctor For You and Your Treatment Goals.
Then check our Directory of Doctors and Facilities. We list US & international physicians and medical centers treating Atrial Fibrillation patients. This evolving list is offered as a service and convenience to A-Fib patients. (Important: Unlike other directories, we accept no fee to be included.)
Be Suspicious of A-Fib Info on the Internet―Here’s Why
by Steve S. Ryan
When I attend talks at most A-Fib conferences, the first slide a presenter shows is often a list of their Conflicts of Interest. It’s required of all speakers.
But this is not required of websites! Health/Heart-related websites are not required to be transparent and reveal their conflicts of interest.
Drug Industry Owns or Influences Most Heart/Health Web sites
The drug and device industry owns, operates or influences almost every health/heart-related web site on the Internet!
For example, did you know that the drug company Ely Lilly partially owns and operates WebMD, the Heart.org, Medscape.com, eMedicine.com and many other health web sites?
The fact is that most health/heart-related web sites are supported by drug companies who donate most of their funding. Consider how that may affect the information they put on their web sites―they’re not going to bite the hand that feeds them.
VIDEO: Video: Buyer Beware of Misleading A-Fib Information on the Web and in the Media
Beware of misleading and incorrect A-Fib information published by reputable sources on the internet and in print media. Steve S. Ryan, PhD, gives three specific examples of why you need to be on the lookout for inaccurate statements about Atrial Fibrillation. 3:59 min. Go to video.
Be Suspicious of A-Fib Info on the Internet
In our crazy world, you can’t afford to trust anything you read on the Internet.
At one time I tried to keep track of all the mis-information found on various A-Fib web sites. When we’d find something wrong, we would write the site. I don’t think we’ve ever received a reply. Finally, we gave up.
(See my video: Buyer Beware of Misleading or Inaccurate A-Fib Information.)
In today’s world, you have to do your own due diligence.
Many web sites put out biased or mis-information often for financial gains, but sometimes it’s just out-of-date. Be skeptical.
You can tell if someone is trying to pull the wool over your eyes. Truth will out. If you feel uncomfortable or that something is wrong with a site, it probably is. When you find a good site, the truth will jump out at you.
Whenever you visit a heart health-related website, ask yourself: “Who owns this site?” and “What is their agenda?” (Hint: Check their list of “sponsors” and follow the money!)
How Does A-Fib.com Measure Up?
A-Fib Inc. has earned GuideStar’s highest rating, the GuideStar Exchange Platinum Seal, a leading symbol of transparency and accountability in the non-profit world.
Transparency means that anyone can find out what we have been doing, what we have achieved, and how we are doing in achieving our ultimate goals. You can check the A-Fib.com public listing at GuideStar.org.
A-Fib.com has also earned the Health On the Net Foundation (HON) Certification for quality and trustworthiness of medical and health online information.
For more, you can also read the A-Fib.com Disclosures page.
Hint: Check their list of “sponsors” and follow the money!
Do I Have a Legal Right to My Medical Records? Can I See Them? Get Copies?
Yes. Patients have the legal right to access both paper and electronic records, to view the originals and to obtain copies of their medical records.
In the U.S. this right is guaranteed by the Health Insurance Portability and Accountability Act of 1996 [HIPAA]. If you live outside the US, know that over 89 countries have adopted Data Privacy Laws. For example, Canada has the Personal Information Protection and Electronic Documents Act (PIPEDA) and in Europe there’s the EU Data Protection Reform.
Be aware that while your medical information or data belongs to you (the patient), the physical pieces of paper, X-ray film, etc. belong to the hospital or health care provider.
Make an Inventory of Your Medical Records
When it comes time to see a new doctor or specialist, you’ll want to supply them with a copy of all your relevant A-Fib related medical records.
You may already have many of these records on file and just need to identify those you are missing. (You may be fortunate and have online access to your information, depending on your health provider.)
How to Request Copies of Missing Records
If you are missing copies of some of your files, you may need to request files from current and former physicians and medical centers. So, how do you do that? For all the details, see my article: 3 Ways to Request Copies of your Medical Records
Once you have a complete set of your medical records, store your originals in a binder or file folder. Store CDs in binder sleeves or copy to your PC. Make backup copies of any digital records.
Where Do You Organize Your A-Fib Records?
We strongly encourage you to get in the habit of storing all your A-Fib-related research and documents in one place. Don’t leave your doctor’s office, medical center or hospital without a copy of every test or procedure they perform. If the test result isn’t immediately available, have them mail it to you.
Patient Online Services: If your healthcare provider offers a secure online portal to your patient records, be sure to sign up for it. It is a convenient way to access your health information and medical records. Services include email communication with your doctors (no phone tag), your doctor’s instructions during office visits, a calendar of all upcoming and past office visits, all tests results, a list of prescribed medications and patient education resources.
Store your A-Fib Research: As you search for your Atrial Fibrillation cure, organize the information you are collecting. Start with a notebook and a three-ring binder or a file folder. To learn more, see my article, Why You Need an A-Fib Notebook and 3-Ring Binder.
Make Medical Record-Keeping a Habit: Don’t leave your doctor’s office or medical canter without a copy of every test they performed. Store in your A-Fib three-ring binder or file folder.
A-Fib Impacts Quality of Life for the Spouse and Family of Patients
Research verifies that the loved ones living with someone in Atrial Fibrillation may be about as stressed as actually having the condition.
In one study the partners of A-Fib patients reported a significant reduction in their quality of life, to the same degree as the patient. (Note: Most severely impaired was a couple’s sex life.)
Educate the Family, Not Just the Patient
One simple solution might be to make sure the spouse comes to office visits, particularly during the early visits around the time of diagnosis, says Dr. Bruce A. Koplan of Brigham and Women’s Hospital in Boston.
Educational programs and other interventions to eliminate some of the unknowns may relieve the anxiety for the patient and their partner leading to improved quality of life for both.
Get all Your Loved Ones Involved
One of the most frequently asked questions I get is from the patient’s partner: “What can I do for my spouse during an A-Fib attack?”
Perhaps, just as important, A-Fib patients should be asking “How can I help my family cope with the stress and anxiety of my Atrial Fibrillation?”
A Momentary Pause: When I talk with an A-Fib patient, I always ask how their spouse or partner is doing―how they are coping. This often elicits a momentarily pause while the patient stops and ponders the impact of A-Fib on their family.
My best advice to patients is to get all your loved ones involved! Knowledge is empowering and reduces stress and anxiety.
Talk with them, answer their questions. To help you, download my free report, “Top 10 Questions Families Ask about Atrial Fibrillation”.
Be Confident & Stay Calm
In addition, for your family’s peace of mind, learn Why & How to Create Your ‘A-Fib Episode Action Plan’. During an A-Fib attack, an A-Fib Action Plan with specific steps is reassuring and helps everyone stay calm. Your family will be confident they’re supporting you in taking the right action at the right time.
Discuss your A-Fib Action Plan with your loved ones and answer their questions. Post a copy in a prominent place where your family can find it easily.
Knowledge Empowers, Reduces Stress and Anxiety
Help Michele: Share your A-Fib Experince With Wearable Heartrate Monitoring Devices
One of our A-Fib Support Volunteers, Michele Straube, will be participating as a patient advocate on a panel during the annual Heart Rhythm Society conference in San Francisco, CA, May 2019. The panel presentation is entitled “The Wearable and Apps: Show Me the Data”. The other panel members, and the workshop audience are medical professionals and experts in cardiac rhythm management
To help Michele share a broad patient perspective, she would greatly appreciate you answering a short survey with your thoughts on wearable/portable devices/apps that provide AFib-related information. Your input may influence what new devices or apps are developed.
All answers will be held confidential. Survey results will be compiled in an anonymous way to share with the Heart Rhythm Society 2019 audience. No individual information will be shared.
Michele S.
The 12-question survey should take no longer than 10 minutes to complete. The survey is open until April 15, 2019. To participate, go to survey: https://www.surveymonkey.com/
You can read Michele’s A-Fib story at Cured After 30 Years in A-Fib by Dr. Marrouche.
