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


Doctors & patients are saying about 'Beat Your A-Fib'...


"If I had [your book] 10 years ago, it would have saved me 8 years of hell.”

Roy Salmon, Patient, A-Fib Free,
Adelaide, Australia

"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

"...masterful. You managed to combine an encyclopedic compilation of information with the simplicity of presentation that enhances the delivery of the information to the reader. This is not an easy thing to do, but you have been very, very successful at it."

Ira David Levin, heart patient, 
Rome, Italy

"Within the pages of Beat Your A-Fib, Dr. Steve Ryan, PhD, provides a comprehensive guide for persons seeking to find a cure for their Atrial Fibrillation."

Walter Kerwin, MD, Cedars-Sinai Medical Center, Los Angeles, CA


Advocacy

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.

 Research tells us A-Fib is just as stressful for the patient’s partner.

“Sometimes spouses come but stay in the waiting room,” he said. “But I don’t think that’s a good idea because they’re suffering too.”

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

Share your A-Fib plan

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

References for this Article

• Koplan BA, et al “Living with atrial fibrillation: Does the spouse suffer as much as the patient?” HRS meeting 2008; Abstract PO1-151.

• Phend, C.  HRS: Atrial Fibrillation Affects Family as Much as Patient. Heart Rhythm Society. Meeting coverage. MedPage Today, May 15, 2008. http://www.medpagetoday.com/meetingcoverage/hrs/9472

• Bohnen M, et al. Quality of life with atrial fibrillation: Do the spouses suffer as much as the patients? Pacing Clin Electrophysiol. 2011;34:804-809. DOI:10.1111/j.1540-8159.2011.03111.x. https://www.ncbi.nlm.nih.gov/pubmed/21535034

• Ekblad, H. et al. The Well-Being of Relatives of Patients with Atrial Fibrillation: A Critical Incident Technique Analysis. The Open Nursing Journal, ISSN: 1874-4346 ― Volume 10, 2016. https://benthamopen.com/FULLTEXT/TONURSJ-8-48. DOI: 10.2174/1874434601408010048

Help Michele: Share your A-Fib Experince With Wearable Heartrate Monitoring Devices

Heart Rhythm Society logoOne 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.

Go to Survey now!

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/r/Z3STKM2

You can read Michele’s A-Fib story at Cured After 30 Years in A-Fib by Dr. Marrouche.

 

Why You Should Learn to Live with Your Atrial Fibrillation—Not!


“Don’t let anyone—especially your doctor—tell you that
A-Fib isn’t that serious…or you should just learn to live
with it…or to just take your meds.”

From Beat Your A-Fib: The Essential Guide to Finding Your Cure


Research studies tell us the longer you have Atrial Fibrillation, the harder it can be to cure it. A-Fib patient Daniel Doane, Sonora, CA, shares his insights:

Daniel D.

“I didn’t realize how continued A-Fib so drastically remodels your heart. ‘A-FIB BEGETS A-FIB’ was the phrase that brought it home to me. 

Every instance of A-Fib changed my heart, remodeled the substrate, and made it more likely to happen again. Get your A-Fib taken care of. It won’t go away. It may seem to get better, but it will return.”

Lessons Learned: After eight years with A-Fib, Daniel had a successful Totally Thoracoscopic (TT) Mini-Maze operation. In his personal story in Beat Your A-Fib, he offers this advice to others with A-Fib:

“Get a catheter ablation or a mini-maze procedure, whichever best suits your situation. I wish I had had this done sooner. I personally think that the sooner a person has a procedure, the better off they are.”

For more from Daniel, a patient now free from the burden of Atrial Fibrillation, see: “I Have Gotten a Lot of Bad Advice From Various GPs”. 

“Don’t let anyone tell you that A-Fib isn’t that serious.

To be cured of your A-Fib, you may need to ‘fire’ your current doctor, see Is This the Year You Fire Your Doctor? and Finding the Right Doctor for You and Your A-Fib.

How to Cook up Your A-Fib Plan for a Cure

At A-Fib.com we encourage you to become your own best patient advocate. Here’s our “recipe” to help you look beyond common drug therapies and nourish you on your path to an A-Fib cure or best outcome for you.

We hope the ingredients in our “recipe” will help you in your journey to a life free of the burden of Atrial Fibrillation. At A-Fib.com we can help you, and many of our A-Fib.com readers have written their personal stories to help you, too.

A-Fib Patient Stories: Listed by Topic

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 help bolster your determination to seek a life free of A-Fib.

Pick an A-Fib story by Theme or Topic: You may find it helpful to read a specific type(s) of stories. For example, about A-Fib patients in your age group, patients with the same symptoms as yours, or perhaps patients who have had a specific treatment such as a cardioversion, catheter ablation or a mini-maze surgery.

Select stories by theme or topic

How to Choose an A-Fib story: To help you select a personal A-Fib story, we’ve cross-referenced them by five major themes and topics:

by Cause
by Risk Factor
by Symptom
by Age group/Years with A-Fib
by Treatment

Each category has several subcategories. To browse stories on a specific subject, see Personal A-Fib Stories ‘Listed by Subject’.

At A-Fib.com, we can help you to
Whip up your Resolve to
Seek your Cure. 

Is 2019 the Year You Fire Your A-Fib Doctor?

Consider this question: “What would you tell your healthcare providers about living with A-Fib?”

That’s the question Mellanie True Hills, StopAFib.org, posed in 2017 to A-Fib patients on several online forums. Around 1,000 A-Fib patients and caregivers from around the world responded.

(How would you answer her question?)

A Top 10 List from A-Fib Patients to Their Doctors

After culling the patient comments, Ms. Hills distilled them into 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. She shared these insights with an AMA audience of doctors and later in a journal article for Electrophysiologists. For the full article with the accompanying explanations, go to her journal article.

Five Things A-Fib Patients Do Not Want To Hear

Ms. Hills’ survey results and 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 reek havoc in their lives.

Responding A-Fib patients in this survey have 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.”

How Does Your A-Fib Doctor Measure Up?

Did anything on this list sound (or feel) familiar to you?

Think about your doctor’s manner and personality. Is this someone who works with you? Someone who listens to how A-Fib makes you feel? Does this doctor inspire confidence? Is this someone you’re comfortable with and trust with your health care?

Even if a doctor is the best in their field and an expert in your condition, that may not help you if they don’t communicate well with you and they don’t respect 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.

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. To bolster the doctor–patient relationship, 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.”

Is 2019 the Year You Fire Your Doctor?

Your relationship with your doctor is important. Do the comments on this second list sound like your doctor?

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 “the best” in their field).

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.

Developing a good relationship helps you feel comfortable asking questions and getting feedback in a give-and-take environment. And you’re more likely to accept and follow their advice.

Changing Doctors Can Be Scary

The 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.”

We can help you. Learn more about how to Find The Right Doctor For You and Your Treatment Goals.

Helping Doctors Understand A-Fib from the Patients’ Point-of-ViewRead about my own experience talking to over 200 cardiologists and surgeons about the emotional stress of A-Fib from a patient’s point of view.

Resources for this article
Mellanie True Hills presentation, 2017 American Heart Association Scientific Sessions in Anaheim, California, November 11-15, 2017.

Recognize AFib Patient Values by Mellanie True Hills. PowerPoint Presentation. From Improving Outcomes for Patients with AFib. American Heart Assoc. Non-CME Webinar. May 3, 2018. https://www.heart.org/-/media/files/health-topics/atrial-fibrillation/improving-outcomes-for-patients-with-afib-ucm_500972.pdf?la=en&hash=CDE25CF86D94CE01B9D5662E45E86619F20FF809

Hills, M T.  The transformative power of understanding and trust in AF care: How doctors can provide better treatment by understanding the hearts―and minds―of AF patients. Journal of Cardiovascular Electrophysiology. Point of View. Volume 29, Issue 4, April 2018. Pages: 641-642. https://doi.org/10.1111/jce.13443

Build Your ‘Dream Team’ to Seek Your A-Fib Cure (or Best Outcome for You)

Treating Atrial Fibrillation doesn’t sound like a team sport. But you don’t beat your A-Fib on your own. It takes a team of healthcare professionals and wellness experts to help you seek your A-Fib cure!

Your ‘Dream Team’ will be unique to you, based on your age, symptoms, and other medical conditions.

The Core Members of your ‘Dream Team’ 

♥ Your primary care physician: often diagnoses your atrial fibrillation; may prescribe and manage your initial medications (especially for risk of stroke); usually refers you to a cardiologist (hopefully a heart rhythm specialist).

♥ Cardiac Electrophysiologist (EP): a cardiologist who specializes in the electrical functions of your heart; often the leader of your ‘Dream Team’! (Read: How to Find the Right Doctor for You.) In addition to your EP, other cardiac professionals may be added to your team including:

▪ Cardiac procedure specialist: if you need a catheter ablation, a left atrial appendage occlusion device (e.g. the Watchman device), a pacemaker, or perhaps an AV Node Ablation with Pacemaker procedure.

▪ Cardiac surgeon: if you need a Maze or Mini-maze surgery

Recruit Beyond Your Team Starters

Don’t stop with just recruiting your star performers. Many of our readers at A-Fib.com have drafted other healthcare practitioners and wellness experts to join their ‘Dream Team’. You may benefit from one or more of the following:

Sleep specialist: More than 40% of A-Fib patients also suffer from sleep apnea. Everyone with A-Fib should be tested (Sleep Lab or home study). In fact, your EP may require testing before agreeing to perform a catheter ablation. Learn more about sleep apnea.

♥ Nutritional counselor/Naturopathic physician: Many A-Fib patients have found relief of symptoms through herbal and mineral supplementation (starting with magnesium and potassium). Learn more about a more integrated or natural method of healthcare.

♥ Diet & Exercise specialist: Losing weight through diet and exercise has benefited many A-Fib patients. Some report their A-Fib symptoms have diminished or stopped completely through changes in lifestyle. Read more about a heart-healthy eating plan.

♥ Complementary treatment practitioners:

▪ Acupuncture: Many A-Fib patients have reported symptom relief with acupuncture. Research indicates that acupuncture may have an anti-arrhythmic effect in patients with atrial fibrillation. Read about acupuncture research.

▪ Yoga: The practice of yoga has benefits, many A-Fib patients report. Specifically, the number of symptomatic A-Fib events were down, heart beat and blood pressure dropped, depression eased and anxiety decreased. Read about A-Fib and yoga.

▪ Chiropractor: Several A-Fib.com patients have reported their symptoms were relieved with chiropractic treatments. In fact, a few clinical studies have focused on arrhythmia and ‘manipulation’ techniques. Read more.

Where to Start: Ask for Referrals

To form your ‘Dream Team’ of health and wellness experts, ask for referrals from other A-Fib patients and from your family and friends.

If you know nurses or support staff who work in the cardiology field or in Electrophysiology (EP) labs, they can be great resources. Also, seek advice from the nurses, nurse practitioners and physician assistants at your doctors’ offices.

To find the right doctor, start with our page, How to Find the Right Doctor for You

Don’t depend on websites of patient’ ratings of doctors or with patient surveys. They lend themselves to manipulation. Ratings often reflect how well-liked a doctor is, not competency. Consult several sites. Read my article, Don’t be Fooled by Pay-to-Play Online Doctor Referral Sites.

Why You Need an A-Fib Notebook and 3-Ring Binder

As an A-Fib patient, you want to create a ‘treatment plan’—an organized path to finding your A-Fib cure or best outcome. Forming your ‘Dream Team’ is an important step toward this goal.

As you form your team, you will want to organize the information you are collecting. Start with a notebook and a three-ring binder or a file folder.

Your A-Fib binder is where you should file and organize all your A-Fib-related treatment information. Learn What to Include in Your A-Fib Binder

Remember, above all,
Aim for Your A-Fib Cure!

Reference for this Article
Iliades, C. Team approach: Your Atrial Fibrillation Management Team. Everydayhealth.com. 5/30/2013 http://www.everydayhealth.com/hs/atrial-fibrillation-and-stroke/your-afib-management-team/

September is A-Fib Awareness Month: The Threat of ‘Silent A-Fib’

GIF: 'That Demon A-FIB ZEBUB' at A-Fib.com

‘That Demon A-FIB ZEBUB’

During September each year, we focus our efforts on reaching those who may have Atrial Fibrillation and don’t know it. ‘Silent A-Fib’ is a serious public health problem. In his personal A-Fib story, Kevin Sullivan, age 46, wrote about his diagnosis of Silent A-Fib.

“I was healthy, played basketball three times per week, and lifted weights. I started to notice on some days playing basketball, I was having some strange sensations in my chest. And sometimes, difficultly catching my breath. But the next day I would feel fine. I assumed this was just what it felt like to get old.”

At the time, he happened to see a cardiologist about medication for high cholesterol:

“I went to see a cardiologist. They looked at my heart with ultrasound and asked if I could feel “that.” I asked them what they were talking about, and they told me that I was having atrial fibrillation. That was the first time I had ever heard of the phrase.”

Like Kevin Sullivan, about 30%–50% of people with Atrial Fibrillation are walking around not knowing they have it. They may get used to their symptoms or they write off the tiredness, dizziness or mental slowness to growing older, but their heart health may be deteriorating.

Untreated, about 35% will suffer a stroke (half of all A-Fib-related strokes are major and disabling).

How You Can Help

A-Fib.com offers an infographic to educate and inform the public about this healthcare issue. See the full infographic here. (See the posters too).

To help spread awareness:

Share it, Pin it, Download it. 

Resources for Writers and Journalists

For more about Silent A-Fib, go to The Threat to Patients with “Silent A-Fib” How to Reach Them

Visit the A-Fib.com Press Room to learn more about Atrial Fibrillation, videos, get free graphics and other resources.

Calling All A-Fib Patients: Participate in On-Line Research Survey on Anxiety and A-Fib

Many of us know how debilitating the emotional component of A-Fib can be and the impact on our quality of life. We often say that Atrial Fibrillation wreaks havoc with our heads as well as with our hearts.

This is what doctoral student Sevinc E. Uzumcu is investigating—the anxiety and depression often associated with Atrial Fibrillation. She has asked all our A-Fib.com readers to help with her research.

This survey is part of her doctoral applied research project at A.T. Still University’s Arizona School of Health Sciences. She is seeking all A-Fib patients to answer her online questionnaire whether or not suffering with anxiety or depression.

This aspect of Atrial Fibrillation is seldom investigated.

Give Just 7 Minutes for A-Fib Research

We strongly encourage all A-Fib patients to take this online survey. I answered the questions, and it only takes about 7 minutes. Your responses are anonymous.

To participate, go to the survey “Invitation”.

Submissions will be accepted through September 30, 2018. As part of her doctoral studies, she hopes to publish the results of her research.

A-Fib Doctors Need to Treat the Emotional Effects

The A-Fib patient community really needs this research study and needs to share the findings with doctors treating A-Fib patients. Raising doctors’ awareness of the psychological aspects may encourage them to develop treatment protocols.

Kudos to doctoral student Sevinc E. Uzumcu for undertaking this research.

(In all my years of attending A-Fib conferences, I’ve never seen doctors discuss this topic. But I did! As a patient advocate, I talked on this topic to 200 cardiologists in Zurich, Switzerland at MAM 2016.)

For dealing with the anxiety associated with A-Fib, see my article: Coping With A-Fib Anxiety and the PODCAST: 15 Ways to Manage the Fear & Anxiety of Atrial Fibrillation.

The Survey Title:The Association Between Atrial Fibrillation and Anxiety

Click here to go the survey Invitation (link is at the bottom of the page).

How Big Pharma Issues Misleading News and Why it Matters

Part of our Don’t Be Fooled series: TV commercials, print ads and news releases by pharmaceutical companies often include misleading statements. As healthcare consumers we all need to use a critical eye (and ear) when considering any health benefit claim.

A Prime Example: A Xarelto News Release

Recently Janssen Pharmaceutical issued news about their anticoagulant Xarelto. The news release was targeted at journalists, hoping they would write and publish articles about Janssen’s news report. (Read the full Jun 14, 2018 news release here.) 

Click image for News Release

It’s a prime example of misleading journalists into passing on inaccurate information to the public. The headline reads:

XARELTO® (rivaroxaban) Associated with Significantly Reduced Time in Hospital and Decreased Costs Compared to Standard of Care in New Study of Patients with Low-Risk Pulmonary Embolism (PE)

A Health News Review Evaluation

HealthNewsReview.org is an online watchdog group that reviews health news stories and news releases that include a claim about medical treatments, tests, products or procedures.

Learn about their 10-point grading scale at the end of this post.

They use a 10-point grading scale to assess whether a story gives information about its sources and their competing interests, quantifies the benefits of a treatment, and appraises the evidence supporting the story’s claims. (To learn about their 10-point grading scale, see the end of this post.)

As an example of a flawed news release, let’s look at the Jun 14, 2018 Janssen/ XARELTO® release. I’ll quote from the summary report by HealthNewsReview.org.

HealthNewsReview.org began their summary by describing the study design:

“The news release is about a study that explores if patients with pulmonary embolism, a blood clot in the lungs, who are at low risk for complications can be sent home from the emergency department early rather than be admitted to hospital.
The patients were divided into two groups: One group of patients were sent home early while taking rivaroxaban (Xarelto), a type of blood thinner,
…whereas the “usual care” group could get any blood thinner of their physician’s choosing, including rivaroxaban, and hospitalization.”

Next they discussed the study findings as reported in the news release:

“The study findings suggest that early discharge of low-risk patients was safe and feasible and also resulted in cost savings because of less time spent in hospital.
Unfortunately, the news release seemed to suggest that it was the use of rivaroxaban (Xarelto) that resulted in cost savings–rather than the strategy of sending low risk patients home early.
The news release failed to state that over half the patients in the comparison group who got usual care also received rivaroxaban.
In other words, the news release implies that rivaroxaban (Xarelto) was being compared to other anti-coagulants when what was actually being compared was an early vs. late discharge strategy.”

Total Score: After completing the 10-point criteria, HealthNewsReview.org gave the Janssen Pharmaceutical press release a score of 6 of 10. (Read the full evaluation on the HealthNewsReview.org website.)

Why This Matters

Not so good a score, 6 out of 10. While the news release writers did many things right, overall the release had a “spin” that misrepresented crucial facts.

First, the headline of this release crosses the line into unjustified language. It credits rivaroxaban with reducing the time patients spent in the hospital, when the early discharge strategy was actually the main difference between the groups—not the use of rivaroxaban (Xarelto).

Next, the writers implied their product (Xarelto) was responsible for cost-savings, when it was not. They implied their product (Xarelto) was compared to other anti-coagulants, when it was not. They neglected to mention that most of the usual care group also got rivaroxaban.

And finally, the news release obscured the actual purpose of the study—to compare the safety of an early discharge strategy compared to keeping patients in the hospital.

To quote from the HealthNewsReview review again:

“Janssen’s misleading news release could result in news stories trumpeting rivaroxaban (Xarelto) as a superior blood thinner, when that is not what this study looked at.”
“In addition, the principal investigator quoted in the news release has financial ties to the company, which should have been disclosed.”

What This Means to Patients

Journalists can fall for misleading information as well as consumers (but not the good ones). They can write articles and pass on misleading data and results.

Some news sources are no better. Many news sites on the web and small newspapers often reprint a news release word for word, and present it as a “news” story.

As a healthcare consumer: You should question the benefit claims in ads. For any health-related news story, look for the source(s). Are they legitimate and from a credible, independent source?

If it’s about a new treatment, ask yourself is this news story balanced? Are alternatives presented (such as lifestyle changes, another drug, surgery, or no treatment)? If you’re only hearing about the potential benefits, ask what the harms are, and how often do they occur?

Don’t be fooled by health-related ads and news stories that ‘spin’ a company’s product or treatment with misleading statments.

Additional Reading

Read my review

For more on this topic, check How to See Through the Hype in Medical News, Ads, and Public Service Announcements. It’s my review of the book “Know Your Chances―Understanding Health Statistics” by Steven Woloshin, Lisa M. Schwartz, and H. Gilbert Welch.

BTW: you can read the book online for free at PubMed Health, part of the U.S. National Library of Medicine.

Resources for this article
• Here’s a prime example of how Big Pharma issues misleading news releases to journalists. healthnewsreview.org June 18, 2018. URL:  https://www.healthnewsreview.org/news-release-review/heres-a-prime-example-of-how-big-pharma-issues-misleading-news-releases-to-journalists/

• Our Review Criteria. HealthNewsReview.org. Last accessed August 3, 2018. URL: https://www.healthnewsreview.org/about-us/review-criteria/

News Story Review Criteria

The HealthNewsReview.org criteria consist of 10 different elements that they think should be included in all health care news stories and all health care news (press) releases:

1.Does the news release adequately discuss the costs of the intervention?

2.Does the news release adequately quantify the benefits of the treatment/test/product/procedure?

3.Does the news release adequately explain/quantify the harms of the intervention?

4.Does the news release seem to grasp the quality of the evidence?

5.Does the news release commit disease-mongering?

6.Does the news release identify funding sources & disclose conflicts of interest?

7.Does the news release compare the new approach with existing alternatives?

8.Does the news release establish the availability of the treatment/test/product/procedure?

9.Does the news release establish the true novelty of the approach?

10.Does the news release include unjustifiable, sensational language, including in the quotes of researchers?

Learn more about the News Story Review Criteria on the HealthNewsReview.org website.

Don’t be Fooled by the Numbers in Drug Ads: How You Get to the Absolute Truth

A while back we posted, Don’t be Fooled by Pay-to-Play Online Doctor Referral Sites, about how it’s common for doctors to pay io be listed in online doctor referral services. (Doctors can pay extra to be listed first in your database search results.)

How Some Drug Ads Mislead

This time we caution you about how some drug ads mislead you.

Here’s an example of an actual news report headline, “New Wonder Drug Reduces Heart Attack Risk by 50%.” Sounds like a great drug, doesn’t it?

Yet it sounds significantly less great when you realize we’re actually talking about a 2% risk dropping to a 1% risk. The risk halved, but in a far less impressive fashion.

A factual headline would be, “New Wonder Drug Reduces Heart Attacks from 2 per 100 to 1 per 100.” Doesn’t sound like such a great drug now, does it?

The online watchdog group HealthNewsReview.org reports, that’s why using “absolute numbers” versus percentages matter. “Absolute numbers” provide you with enough information to determine the true size of the benefit.

The Tale of a 50% Off Coupon

Professors Steve Woloshin and Lisa Schwartz of the Dartmouth Institute for Health Policy & Clinical Practice explain absolute numbers versus percentage (relative numbers) in a creative way.

“… [it’s] like having a 50% off coupon for a selected item at a department store. But you don’t know if the coupon applies to a diamond necklace or to a pack of chewing gum.
Only by knowing what the coupon’s true value is—the absolute data—does the 50% have any meaning.”

So, 50% off a diamond necklace might be a savings of $5,000. While 50% off a pack of gum might be 50 cents. Absolute numbers tell the whole story.

The Bottom Line: Be Skeptical, Ask Questions

As a healthcare consumer, it’s wise for you to be skeptical anytime you hear a benefit size expressed as a percentage, for example, a 50% improvement or 50% fewer side effects.

Read my book review

You should ask yourself 50% of how many? Of 10,000 patients? Or 10 patients? Which result is significant and which is just blowing smoke?

Numbers matter. That’s how you get to the absolute truth.

Additional Reading

See also How to See Through the Hype in Medical News, Ads, and Public Service Announcements, my review of the book “Know Your Chances―Understanding Health Statistics”.

The Math Behind a 50% Reduction

“New Wonder Drug Reduces Heart Attack Risk by Half.” How was this claim calculated?

The Raw Data: In the research study, the 5-year risk for heart attack for:

-a group of patients treated conventionally was 2 in 100 (2%) and
-a group of patients treated with the new drug was 1 in 100 (1%).

Absolute Difference: The absolute difference is derived by simply subtracting the two risks: 2% – 1% = 1%. Expressed as an absolute difference, the new drug reduces the 5-year risk for heart attack by 1 percentage point (or 1 in 100).

Relative Difference: The relative difference is the ratio of the two risks. Given the data above, the relative difference is: 1% ÷ 2% = 50%. Expressed as a relative difference, the new drug reduces the risk for heart attack by half, or 50%.

Absolute Numbers Versus Percentages:
How the numbers work (or mislead the reader)

Resource for this article
Tips for Understanding Studies: Absolute vs Relative-Risk. HealthNewsReview.org. Retrieved August 2, 2018.  URL: https://www.healthnewsreview.org/toolkit/tips-for-understanding-studies/absolute-vs-relative-risk/

Will You Help Us Serve A-Fib Patients and Their Families?

In the spirit of the upcoming Thanksgiving holiday in the U.S., I want to share this lovely message from an A-Fib.com reader:

Will You Help Us Serve A-Fib Patients and Their Families?

Since 2002, Patti and I have personally funded A-Fib.com and donated our time to research and write all content. Since we want A-Fib.com to remain independent and ad-free (i.e. no third-party advertising like Google ads), our long-term goal is to make A-Fib.com a self-sustaining site. Here’s how you can help.

How We Generate Ad-Free Revenues

First, from time-to-time we receive donations from grateful readers (look for our PayPal link in the right sidebar).

A-Fib.com portal link to Amazon.comOur second source of revenue comes each time you use our A-Fib.com Amazon.com link to shop online (Just use our link and shop as usual). We earn a small commission on each sale (at no additional cost to you). Bookmark this A-Fib.com portal link to Amazon.com. Use it every time.

During the Upcoming Holiday and Gift-Giving Seasons

I ask you to support A-Fib.com in two ways:

Consider a one-time or recurring donation through our PayPal link (see our sidebar) or mail us a check.
Use our A-Fib.com Amazon.com link every time you shop online.

Won’t you help keep A-Fib.com ad-free and independent?

To Find Your A-Fib Cure, Build Your ‘Dream Team’

Treating Atrial Fibrillation doesn’t sound like a team sport. But you don’t beat your A-Fib on your own. It takes a team of healthcare professionals and wellness experts to help you seek your A-Fib cure!

While your ‘Dream Team’ will be unique to you, based on your age, symptoms, and other medical conditions, the core members of your Dream Team’ will include:

♥ Your primary care physician: often diagnoses your atrial fibrillation; may prescribe and manage your initial medications (especially for risk of stroke); usually refers you to a cardiologist (hopefully a heart rhythm specialist).

♥ Cardiac Electrophysiologist (EP): a cardiologist who specializes in the electrical functions of your heart; often the leader of your Dream Team! (Read: How to Find the Right Doctor for You.) In addition to your EP, other cardiac professionals may be added to your team including:

▪Cardiac procedure specialist: if you need a catheter ablation, a left atrial appendage occlusion device, i.e. Watchman, AV Node/Pacemaker procedure, pacemaker, etc.

▪Cardiac surgeon: if you need a Maze surgery or Mini-maze surgery

Recruit Beyond Your Team Starters

Don’t stop with just recruiting your star performers. Many of our readers at A-Fib.com have drafted other healthcare practitioners and wellness experts to join their Dream Team. You may benefit from one or more of the following:

Sleep specialist: More than 40% of A-Fib patients also suffer from sleep apnea. Everyone with A-Fib should be tested (Sleep Lab or home study). In fact, your EP may require testing before agreeing to perform a catheter ablation. Learn more about sleep apnea.

♥ Nutritional counselor/Naturopathic physician: Many A-Fib patients have found relief of symptoms through herbal and mineral supplementation (starting with magnesium and potassium). Learn more about a more integrated or natural method of healthcare.

♥ Diet & Exercise specialist: Losing weight through diet and exercise has benefited many A-Fib patients. Some report their A-Fib symptoms have diminished or stopped completely through changes in lifestyle. Read more about a heart-healthy eating plan.

♥ Complementary treatment practitioners:

Acupuncture: Many A-Fib patients have reported relief with acupuncture. Research indicates that acupuncture may have an anti-arrhythmic effect in patients with atrial fibrillation. Read about acupuncture research.

Yoga: Many A-Fib patients practice yoga and report benefits, specifically, the number of symptomatic A-Fib events were down, heart beat and blood pressure dropped, depression eased and anxiety decreased. Read about A-Fib and yoga.

Chiropractor: Several A-Fib.com patients have reported relief with chiropractic treatments. In addition, a few clinical studies have focused on arrhythmia and ‘manipulation’ techniques. Read more.

How to Build Your ‘Dream Team’

Over 90 stories of inspiration at A-Fib.com

Seek inspiration!

Forming your ‘Dream Team’ is an important step toward seeking your A-Fib cure. To build your team, we advise you to use all the resources available to you. Ask for referrals from other A-Fib patients, family and friends, and from your doctors’ nurses, nurse practitioners and physician assistants.

For inspiration, learn how others have dealt with their atrial fibrillation. Just browse our list of over 90 A-Fib Stories of Hope and Encouragement. Read a few stories with similar symptoms to your own, age group, etc.

Also, consider corresponding with one of our A-Fib Support Volunteers. They’ve all been where you are now. They have been helped along the way, and want to help other A-Fib patients.

Photos of contributors to Personal Experiences on A-Fib.com

A few of our A-Fib Support Volunteers

Remember, above all,
Aim for Your A-Fib Cure!

Reference for this Article
Iliades, C. Team approach: Your Atrial Fibrillation Management Team. Everydayhealth.com. 5/30/2013 http://www.everydayhealth.com/hs/atrial-fibrillation-and-stroke/your-afib-management-team/

Donate: Help A-Fib.com Become a Self-Supporting Site, but Still Ad-Free

Donate to Help A-Fib.com Become a Self-Supporting Site, but Still Ad-Free

A-Fib.com (A-Fib, Inc) is a 501(c)(3) nonprofit organization dedicated to patient education of those with Atrial Fibrillation and their families, and to empowering patients to find their A-Fib cure or best outcome. Won’t you join us? Donate Today. Support our Mission!

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Your Support is Needed and Appreciated.

“I’m happy to donate [to A-Fib.com]. Steve has always been very helpful answering my questions. You guys do a great job for a good cause! God bless,”

Mary Jo Hamlin, Liverpool, NY

December 2016 


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.

Contribute to the Mission of A-Fib.com

Volunteers - A-Fib.com

A-Fib Support Volunteers

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.

 

We Can’t Say it Enough: A-Fib Can be Cured!

From TV ad for the blood thinner Xarelto.

Does this sound familiar?  You’re watching TV when NASCAR driver Brian Vickers and comedian Kevin Nealon appear playing a round of golf.

An energetic, healthy, Nealon is talking about having A-Fib, an irregular heartbeat not caused by a heart valve problem. He’s excited to be off warfarin and on his new anticoagluant. Life is good again.

This and other similar drug ads are targeted at A-Fib patients. What these pharmaceutical company ads don’t tell you is…

• You are on their meds for life!
• These meds do nothing to treat your atrial fibrillation (just your increased risk of stroke).
• A-Fib can be cured.

Don’t Settle for a Lifetime on Meds: Aim for A Cure

A-Fib is definitely curable. (I was cured of my A-Fib in 1998). If you have A-Fib, no matter how long you’ve had it, you should aim for a complete and permanent cure (or best outcome for you).

See our Personal A-Fib stories of Hope and Courage to learn how others have dealt with the burden of atrial fibrillation.

If You’re a Newly Diagnosed Patient

If you are new to this website, or newly diagnosed, check out our Frequently Asked Questions by Newly Diagnosed Patients.

Scan the list of questions, click on a few links for our answers.

But you might want to start with: Is Atrial Fibrillation curable? Or can you only treat or control it?

If You’re a Returning Reader: Check Out All Our Answers

FAQ: ABOUT LIVING WITH A-FIB

♥ For the Newly Diagnosed A-Fib Patient
♥ Coping with Your A-Fib: Day-to-Day Issues
♥ Understanding Atrial Fibrillation

FAQ: ABOUT A-FIB TREATMENTS OPTIONS

♥ Natural Therapies & Holistic Treatments
♥ Mineral Deficiencies & Supplements
♥ Drug Therapies and Medicines
♥ Catheter Ablation, PV Isolation/Ablation, CyroBalloon Ablation

Don’t Settle for a Life on A-Fib Meds
Aim for a Cure!

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