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
My A-Fib’s Back: Need a Touch-Up This Week
On August 19 I’m scheduled for a touch-up ablation by Dr. Andrea Natale at Los Robles hospital in Thousand Oaks, CA.
Dr. Shephal Doshi and Steve Aug 1 2019
I’m symptom free. But my Medtronic Reveal LINQ loop recorder shows I still have some A-Fib after a catheter ablation by Dr. Shephal Doshi at St. John’s hospital in Santa Monica 24 months ago (August 2019).
Background: My first catheter ablation was in 1998 by Drs. Michel Haïssaguerre, Pierre Jais, and Dipen Shaw in Bordeaux, France. Though it was relatively primitive compared to what EPs are doing today, it kept me A-Fib free for 21+ years.
Steve with Dr Häissaguerre who cured Steve in 1998.
Left Atrial Appendage: During the touch-up ablation, my Left Atrial Appendage (LAA) may have to be electrically isolated. If that’s done, and my LAA doesn’t empty of blood properly, I may have to have a Watchman device inserted to mechanically close off my LAA. As an enthusiastic runner/sprinter, I don’t want to have my LAA closed off as it can reduce blood flow. But at 80 years old, I may have little choice. I’ll post again after my redo ablation.
A “re-do” catheter ablation is nothing to be frightened of. My procedure this week, like last time, will be as an out-patient. For my 2019 touch-up procedure, I arrived at the hospital at 5am and was back home at 5pm. In and Out. Lickety-split!
11 Ways A-Fib Robs You of Your Heart Health
Atrial Fibrillation is a disease of the heart but affects your overall health as well. It is often said, “A-Fib begets A-Fib”. It’s a progressive disease and is self-perpetuating.
Here are the many ways A-Fib can affect you:
1. Risk of stroke. The biggest danger from A-Fib is stroke. Because your heart isn’t pumping out properly, blood can pool in your atria then form clots that travel to the brain causing stroke. Use of anticoagulant drugs reduce, but don’t eliminate, the risk of an A-Fib stroke. Anticoagulants are high risk drugs. They don’t cure or improve your A-Fib.
2. Reduced Blood Circulation. A-Fib reduces your heart’s pumping ability by 15%–30%, decreasing blood flow to the brain and to the rest of the body. This may cause weakness, fatigue, dizziness, brain fog, fainting spells, swelling of the legs, and shortness of breath. Over time, reduced blood circulation contributes to many other health issues.
3. Fibrosis (Structural Remodeling). Over time A-Fib produces fiber-like scar tissue in place of the normal smooth walls of the heart. Fibrosis makes the heart stiff, less flexible and weak with a loss of atrial muscle mass. It overworks the heart, reduces pumping efficiency, and leads to other heart problems. Fibrosis is considered permanent and irreversible.
4. Atrial stretch/expansion (Structural Remodeling). When in A-Fib, your left atrium has to work harder than normal. Over time, the left atrium tends to stretch or dilate thereby weakening the heart muscle. An enlarged left atrium can be diagnosed and measured using an echocardiogram (ECHO). (A normal size is 2.0-4.0 cm; over 5.5 cm is considered chronically enlarged.)
5. Electrical Remodeling. A-Fib causes electrophysiological changes in the heart which are self-perpetuating, make the heart more prone to go into and remain in A-Fib. This Remodeling develops quickly, is progressive, and may be persistent. For instance, an A-Fib episode once a month may escalate to once a week and might become longer than before.
6. Heart Failure. Researchers have found that A-Fib is strongly associated with heart failure which is five times more likely in people with A-Fib. When in A-Fib, your heart isn’t pumping properly. So it’s not surprising that A-Fib leads to heart disease, heart failure, and sudden death. A-Fib affects your whole body. It damages your heart, brain, and other organs.
7. Coexisting Conditions (Comorbidities). The symptoms of one illness can predispose a person to another. Most A-Fib patients have at least one comorbidity such as diabetes, hypertension or sleep apnea. A somewhat surprising association with A-Fib is kidney disease and peripheral arterial disease.
8. Dementia. A-Fib has been independently associated with dementia. Leaving patients in A-Fib doubles the risk of developing dementia. Current drugs, even statins, don’t work or have mixed results in preventing dementia. Because your heart is being remodeled electrically, your A-Fib may eventually worsen to Long-standing Persistent A-Fib (which is harder to cure).
9. Brain Atrophy, Reduced Brain Volume and Cognitive Function. Research shows A-Fib patients experience loss of both grey and white brain matter, as well as white matter brain lesions. Cognitive function and processing speed decline significantly.
Mental skills and memory are also affected. Max Jussila, a Finnish executive, recalls his challenges. “I have never been mentally so incapable. My memory was gone, my speech was gone (I speak five languages), even the simplest work-related problems seemed impossible for me to handle, let alone solve.”
10. Reduced Quality of Life. For many patients, A-Fib disrupts both work and family life. They are often preoccupied about the next A-Fib attack. When will it hit? How bad will it be? Where will I be at the time? When you travel, you first research the location of the nearest emergency room.
A-Fib can have significant consequences on your social interactions with loved ones, friends and colleagues. The patient’s livelihood may be impacted. Family life may be unsettled. 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.
11. Psychological and Emotional Effects. A-Fib wreaks havoc with your head as well as your heart. Anxiety, fear, frustration, worry, confusion, depression and anger can be as debilitating as the disease itself. Psychological distress worsens A-Fib symptoms’ severity. Physical ailments like colds may be more frequent because of a depressed immune system.
How Much Will You Pay to Stay in A-Fib?
A-Fib costs you in many ways. Beyond the physical, mental and emotional toll, staying in A-Fib is costly to your wallet too. Besides the annual costs of your medications, ER visits, etc., the odds of your being hospitalized increases (each year 750,000 hospitalizations in the U.S. are due to A-Fib).
According to the CDC, just in terms of dollars and cents, A-Fib on average costs you an additional $8,700 a year.
When you add up all the costs (physical, emotional and monetary) of living in A-Fib, doesn’t it make sense to ‘Seek you Cure’?
Don’t Settle for a Lifetime on Meds―Seek your A-Fib Cure
Today’s TV advertisements for anticoagulants talk about “living with A-Fib”. They show patients living happy, healthy, care-free lives while still in A-Fib. That’s a Pollyanna fantasy―just take an A-Fib pill and live happily ever after.
Contrary to today’s media, your goal shouldn’t be to just ‘manage’ your A-Fib. For patients with A-Fib, it isn’t enough to simply take an anticoagulant.
Your goal should be to get your A-Fib fixed and have your heart beat again in normal sinus rhythm (NSR). Educate yourself. Learn all your treatment options.
Don’t just settle. Seek your A-Fib cure.
Original Medicare or Medicare Advantage Plans? Which is Better If You have A-Fib?
An A-Fib.com reader emailed me that he has A-Fib and is turning 65. He has to decide whether to sign up for Original Medicare or a Medicare Advantage plan. (Open Enrollment is between October and December each year). This decision will affect how much he pays for coverage, what services he gets, what doctors he can use, and his overall quality of care.
Medicare coverage options is a complicated business. I’m not qualified to give you advice. My intent is to point out areas of interest to A-Fib patients. Remember these comments are only my opinion.
Choice of Doctors?
Which is better if you have A-Fib?
With the Medicare Advantage plans, your choice of doctors is limited. Usually you can only use doctors in the plan’s network. This may be fine for a primary care doctor or family doctor.
What if you need a specialist? To see a specialist, you’ll need a referral from your primary care doctor. These referrals are often hard to obtain. You also need prior approval for most services.
Choice of Electrophysiologists (EPs)?
If you have A-Fib, your choice of EPs in Medicare Advantage plans is severely limited. All too often Medicare Advantage plan administrators seem more motivated to reduce your choices.
In one instance, I found only a single EP listed as available for someone I was trying to advise.
Referrals Out of Network. And it’s nearly impossible to get a referral to an industry leader, no matter how good a doctor is or how great a reputation they have. The administrators make it incredibly difficult. And there is usually no appeal.
Not All EPS Are Equal. Most EPs in Medicare Advantage plans would not be considered world beaters (i.e., best in their field). Though most of my experience with Advantage Plans is anecdotal, I’ve never seen an EP industry leader listed in these types of plans.
Not all EPs are equal. Some are low volume operators with high complication rates. You want to avoid these types of EPs at all costs.
When You Need the Best: If your A-Fib is difficult to treat or you have comorbidities (i.e., hypertension, obesity, diabetes) that complicate your treatment, your choice of EP is vital. You need an EP with a track record in successfully treating difficult A-Fib cases.
Shameful: I know of one person who was diagnosed with A-Fib under a Medicare Advantage plan. She was never told about Electrophysiologists who are specialists in arrhythmias, and she was never told about treatments like catheter ablation. This is all despite her facility having well-respected EPs and an active catheter ablation lab. The staff knew but didn’t discuss it with her.
In the end, she had to visit our website to learn about Electrophysiologists and catheter ablation options.
Medicare Gives You Real Choices
Compared to Medicare Advantage plans, with Original Medicare you can use any doctor or hospital that takes Medicare, anywhere in the US.
This is really important if you have A-Fib. You want to be able to go to the best EP you can find.
Fees or Fines for Seeing an EP in Medicare Advantage Plans
Another factor to be considered in Medicare Advantage plans is you pay a fee or fine for every time, for example, when you see an EP. One person told me his fee was $45.00 for one visit to an EP. Those fines or fees can add up pretty fast, especially when you have comorbidities and see multiple doctors for specialized tests.
In contrast, Original Medicare covers routine doctors’ visits. They send payment to the doctor, and the doctor cannot charge the person more than the plan allows. (Check your coverage before making any coverage decision.)
Be Prepared to Fight Advantage Plan Administrators
Having to interact with a Medicare Advantage plan administrator can be a very frustrating experience. Knowing you’re not being taken care of properly can be very depressing.
You often have to be very assertive and fight them ‘tooth and nail’ to get the care and treatment you need. It can take weeks, months, even years until you finally see the right doctors and receive the treatment you need.
Medicare: More Choices and Better for Psychological Health
The bottom line for most A-Fib patients is that Original Medicare not only gives you more choices but is also better for your psychological health. Also, with Original Medicare if you disagree with a coverage or payment decision, you have the right to appeal. (See Your Medicare Benefits booklet.)
Under Original Medicare, it’s tremendously liberating to know you can go to any doctor or facility you want. The last thing you want in your life is some bureaucrat dictating to you what treatments or doctors you can access.
Though obviously many personal and individual factors may influence your choice of Medicare plans, in general, Original Medicare is probably a better choice for many patients with A-Fib.
Medicare coverage options is a complicated business. To learn more, see the downloadable booklet, Your Medicare Benefits.
Are My Comments Too Negative?
Your choice of health coverage is a tricky subject. People tend to email me when they have negative experiences. So, my anecdotally-based comments may be more negative than warranted. There are many different Medicare Advantage plans. Some may be better than others.
If anyone has any clinical studies on this subject or more positive experiences, please let me know.
Book Review: “Restart Your Heart: The Playbook for Thriving with AFib” by Dr. Aseem Desai
Review by Steve S. Ryan, PhD
Restart Your Heart by Dr. Aseem Desai
Dr. Aseem Desai’s book Restart Your Heart: The Playbook for Thriving with AFib is written for Atrial Fibrillation patients by a practicing Electrophysiologist. It will be well received and is long overdue.
Caveat: By advocating living with A-Fib and by not telling patients of the dangers of living in A-Fib, Dr. Desai may be doing lasting harm to many A-Fib patients.
Dr. Desai’s Writing Style
One of the best features of Dr. Desai’s book is his patient-friendly writing style. He avoids “medicalize.” What he writes is easy to read and relatable. And he doesn’t shy away from explaining complicated concepts.
He is particularly good at explaining the scientific basis of A-Fib in a way patients can relate to. In particular, his explanation and illustration of Ion Channel Receptors (p. 21-23) is one of the best parts of his book.
A Dangerous and Deceptive Goal for A-Fib Patients
Atrial Fibrillation (A-Fib) is a progressive disease. The longer you have A-Fib, the greater the risk of your A-Fib episodes becoming more frequent and longer, often leading to continuous (Chronic) A-Fib. The abnormal rhythm in your heart causes changes and enlarges your atria (called remodeling), making it work harder over time.
Leaving patients in A-Fib overworks the heart, leads to fibrosis, stretches/expands the atrial heart walls, weakens the heart, increases the risk of stroke, develops (congestive) heart failure, and leads to dementia because of reduced blood flow to the brain.
I cannot endorse Dr. Aseem Desai’s book because he encourages patients to live with A-Fib. He writes/advocates the following (location noted):
… Continue reading this book review..->
Doctors Paid for Use of a Manufacturer’s Brand of Implantable Cardioverter-Defibrillator (ICD)
Another study of how Medical device manufacturers manage to pay doctors to prescribe their product, in this case, brands of ICDs. A JAMA study documented that “physicians were most likely to use the ICD brand from the manufacturer who gave them the most money.”
(But it should be noted that there was no association between the amount physicians received and postprocedural complications and/or death.)
Study of Payments to Doctors
In this study patients received a first-time implantable cardioverter-defibrillator (ICD) or cardiac resynchronization therapy defibrillator (CRT-D) from any of the 4 major manufacturers.
A normal chest X-ray after placement of an ICD
Data came from the National Cardiovascular Data ICD Registry linked with the Open Payments Program’s payment data.
Over a 3-year period (2016-2018), 145,900 patients received these devices. They were implanted by 4,435 physicians at 1,763 facilities. 94% of these physicians received payments from these device manufacturers.
Between 38.5% and 54.7% of patients received devices from the manufacturers who had provided the physicians with the largest payments.
For example, doctors who received the highest payments from “manufacturer A” were about 6-fold more likely to use its product versus an ICD from a company that didn’t pay them. This is according to Jeptha P. Curtis, MD, and colleagues at Yale School of Medicine in New haven, CT.
“Manufacturer D” did even better at rewarding doctors who used its ICDs. Those receiving the highest payments were 17-fold more likely to use its devices.
Is “Buying Off” Physicians Unethical and/or Illegal?
To this question Dr. Curtis replied:
“Instead I think it represents a softer type of influence. If I have a choice of devices from different manufacturers, and I have financial entanglements with one of them, it stands to reason that I will be more likely, consciously or not, to select that manufacturer, particularly if I do not think there is a difference in device performance.”
Current laws, such as the Anti-Kickback Statute and The Stark Law can be circumvented by saying the payments are for such things as speakers’ fees or travel costs. The Curtis study didn’t examine differences in types of payments such as consulting fees versus food and beverage payments (a definite limitation).
Editor’s Comments
Payments to doctors by device manufacturers (and pharmaceutical companies), however they are justified, undermine the reputation and trust we ought to have in our doctors.
As consumers, we must do all we can to make sure that laws are written or revised to address these payments.
To quote Dr. Curtis, “Patients need to know that decisions regarding their care have been made on the basis of fact and science, not on how much money their physician received from a device company.”
Hospitalized COVID-19 Patients and Cardiac Scar Tissue
Much has been learned about COVID-19 in the last year. Of special interest to A-Fib patients are the possible effects on the heart.
Some studies of hospitalized COVID-19 patients report it’s common to find scars on the muscular tissue of the heart (myocardial lesions). Even those with a milder case of the virus are experiencing adverse effects on their heart health.
Currently, we don’t know if those cardiac scars could lead to future rhythm disorders. In the short-term, there seems to be no consequences.
A-Fib causes fibrosis that remodels your heart
What’s All the Fuss about Cardiac Scar Tissue (Fibrosis)?
Scar tissue is basically dead tissue with reduced or no blood flow. Over time it makes the heart stiff, less flexible and weak. This fibrotic tissue overworks the heart and reduces pumping efficiency.
Danger of Fibrosis: Any type of scarring and fibrosis in the heart may eventually affect heart function that could lead to heart failure and sudden cardiac death.
COVID-19 and A-Fib? We know that being in A-Fib can lead to scarred tissue (fibrosis) especially over time. Could COVID-19 produce the same type of scarring and contribute to your A-Fib?
You can reduce this risk by getting the COVID-19 vaccine to protect your heart.
VIDEO: Feb 2021: “How COVID-19 Affects the Heart“
Interview with Dr. Teresa Daniele, chief of cardiology at UCSF Fresno who shares with us how COVID-19 can affect people’s cardiac systems; and how the virus can cause direct inflammation of the heart, weakness and formation of muscle scar tissue. Published by MedWatch Today. Feb 22, 2021. (3:13 min.)
YouTube video playback controls: When watching this video, you have several playback options. The following controls are located in the lower right portion of the frame: Turn on closed captions, Settings (speed/quality), Watch on YouTube website, and Enlarge video to full frame. Click on arrow icon to start playback.
Air Quality, Pollution and Atrial Fibrillation: Is There a Link?
Millions of people live in areas where air pollution can cause serious health problems. Local air quality can affect our daily lives. Like the weather, it can change from day to day.
Researchers wanted to know if there’s a role of traffic & non-traffic air emissions in triggering cardiovascular (CV) hospitalizations.
They tested levels of air pollution (i.e. particulate matter, PM) in multiple urban areas of New York State, then the next day correlated this data with hospitalizations for arrhythmia.
Research Findings: This research revealed that higher pollution levels lead to:
• more than doubled hospitalization for A-Fib;
• nearly quadrupled hospitalizations for stroke.
This is a wake-up call for anyone with Atrial Fibrillation who lives in an urban setting.
Air quality is a measure of the solid particles and liquid droplets found in outdoor air. These pollutants (particulate matter) are emitted from power plants, industries and automobiles.
How Can I Reduce My Exposure to Air Pollution? You can use air quality alerts to protect yourself and others when particulate matter (PM) reaches harmful levels.
The Air Quality Index (AQI) tells you how clean or polluted your outdoor air is, along with associated health effects that may be of concern. Learn how you can get AQI notifications sent to you.
Check the Air Quality Data Where You Live: There’s a nifty little app to check your area’s air quality rating for today. Just enter your city name (it displays the best matches to select from) or enter your zip code.
The AQI “dial” will appear with your location’s information. See graphic example (right). To check your area’s air quality, go to AirNow (https://www.airnow.gov/)
Bottom Line if You Have A-Fib: Be aware of the air quality where you live. Protect yourself. Stay informed. (Many news channels report the AQI each day.)
If you have an inkling that your air quality might be low that day, go online and check the Air Quality Index for your locale. If it’s low, stay indoors. Curtail or postpone outdoor activities. If you must go out, use your car’s air conditioner.
COVID-19: White House Pushes Unproven Drugs—Risk of Arrhythmias and Sudden Death
by Steve S. Ryan
Note: I have already written about the risk of COVID-19 for patients with A-Fib (and other cardiovascular diseases). See my post: COVID-19 Virus: Higher Risk for A-Fib Patients.
In recent coronavirus pandemic press conferences, President Donald Trump has repeatedly advocated the use of the drugs hydroxychloroquine (HCQ) and azithromycin (Z-Pak) to treat the COVID-19 virus.
He often says, “What have you got to lose?” About treating patients, he also said these drugs can “help them, but it’s not going to hurt them.” (Really?)
Hydroxychloroquine & Azithromycin Danger―“What Have You Got to Lose?”
The drugs hydroxychloroquine and azithromycin are currently gaining attention as potential treatments for COVID-19. Hydroxychloroquine sulphate (Plaquenil) is an antimalarial medication. Azithromycin (Z-Pak) is an antibiotic. (Antibiotics in general are ineffective against viruses.)
Each has potential serious implications for people with existing cardiovascular disease.
Contrary to Mr. Trump’s statements, you do have a lot to lose. Medical groups warn that it’s dangerous to be hawking unproven remedies.
Recently, three U.S. heart societies published a joint statement to detail critical cardiovascular considerations in the use of hydroxychloroquine and azithromycin for the treatment of COVID-19.
According to the “Guidance from the American Heart Association, the American College of Cardiology and the Heart Rhythm Society”:
Complications include severe electrical irregularities in the heart such as arrythmia (irregular heartbeat), polymorphic ventricular tachycardia (including Torsade de Pointes) and long QT syndrome, and increased risk of sudden death.
The effect on QT or arrhythmia of these two medications combined has not been studied.
With these increased dangers in mind, we must not take unnecessary (or foolish) risks in the rush to find a treatment or cure for COVID-19.
What We Know So Far About These Drugs and COVID-19
COVID-19 Virus: Higher Risk for A-Fib Patients
COVID-19, the disease caused by the new coronavirus SARS-CoV-2, has sickened hundreds of thousands and continues to kill large numbers of people worldwide.
Typically, it’s considered a threat to the lungs, but COVID-19 also presents a significant threat to heart health, according to recently published research.
“But It’s Just the Flu, Right?”
“During most flu epidemics, more people die of heart problems than respiratory issues like pneumonia,” according to Dr. Mohammad Madjid, McGovern Medical School at UTHealth. He expects similar cardiac problems among severe COVID-19 cases.
In addition, COVID-19 can worsen existing cardiovascular disease. For example, Atrial Fibrillation patients may develop myocarditis, an inflammation of the heart muscle. If left untreated, myocarditis may lead to symptoms of heart failure.
And for otherwise healthy people, COVID-19 can cause new heart problems.
Comorbid Conditions Increase Fatality Rate
Many A-Fib patients also suffer from other chronic conditions such as diabetes and hypertension. With comorbid conditions, COVID-19 can increase the severity and fatality of the virus.
According to research from the Chinese Center for Disease Control and Prevention (CCDC), COVID-19 patients from mainland China who reported no comorbid conditions had a case fatality rate of 0.9%.
While patients with the following comorbid conditions had much higher rates:
+ 10.5% for those with cardiovascular disease
+ 7.3% for diabetes
+ 6.3% for chronic respiratory disease
+ 6.0% for hypertension
+ 5.6% for cancer.
Among critical cases, the case fatality rate is unsurprisingly highest at 49%.
Take Away: A-Fib Patients at Higher Risk for COVID-19
Patients with underlying cardiovascular disease (i.e., A-Fib) are at higher risk for developing COVID-19 and have a worse outlook. Prior heart disease is a risk factor for higher mortality from COVID-19. Cardiovascular patients are encouraged to take additional, reasonable precautions to avoid contact with the COVID-19 virus. And to stay current with vaccinations, especially for influenza and pneumonia. Since people can spread the COVID-19 virus before they know they are sick, it is important to stay away from others when possible, even if you or they have no symptoms. • Stay at least 6 feet (2 meters) from other people Social distancing is especially important for people who are at higher risk of getting very sick including older adults and people of any age who have serious underlying medical conditions. For more information: see the article “How to Protect Yourself & Others” from the Centers for Disease Control and Prevention (CDC).A-Fib Patients: Practice Social Distancing and Stay Safe at Home
• Do not gather in groups
• Stay out of crowded places and avoid mass gatherings
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.
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