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
Why You Need an A-Fib Notebook and 3-Ring Binder (and a Patient Portal?)
As you search for your Atrial Fibrillation cure, you will want to organize the research and medical treatment information you are collecting. Start with a notebook and a three-ring binder or a file folder.
What to Include in Your A-Fib Binder
Your A-Fib binder is where you should file and organize all your A-Fib-related treatment information, such as:
• contact list of all health care providers and facilities
• lab test results, EKG strips and other medical records
• office visit notes and phone calls
• list of all medications
• health insurance claims and records
• records of any major medical event from the past two years
• completed worksheets and blanks ready for use
• research from the internet or medical center library
Our available free worksheets: 10 Questions to Ask Before Taking Any Drug; 10 Questions to Ask When Interviewing Any Cardiologist; Keep an Inventory List of Your Medications
Make Medical Record-Keeping a Habit
Make Medical Record-Keeping a Habit
We strongly encourage you to get in the habit of keeping a copy of every test result you get in your three-ring binder. 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 email you a copy. (For another option, see my comment below about using Patient Portals.)
If you are missing some records, read our article, How to Request Copies of your Medical Records. We give you three ways to request your medical records from your doctors and medical providers.
Does Your Healthcare Provider Offer a Patient Portal?
A patient portal is a secure website that gives you direct access to your medical information, including lab and procedure results, immunizations, prescribed medications, doctor visit summaries and upcoming scheduled appointments. (You can download lab results and imaging reports, etc. to your laptop or send to yourself via e-mail.)If you’re not yet connected, it’s easy to sign up. Just ask your healthcare provider.
Add Your Personal A-Fib Summary
Doctors appreciate knowledgeable, informed, and prepared patients. Each doctor will probably ask you many of the same questions, such as:
• What particular symptoms are bothering you?
• When did you first begin to experience these symptoms?
• Are these symptoms occasional or intermittent or persistent?
• Is there anything that appears to worsen or lessen your symptoms?
For efficiency, prepare your Personal A-Fib Medical Summary (see How to Create Your Personal A-Fib Medical Summary) and include a copy with each packet of medical records you send to doctors. Store the original and copies in your binder.
Prepare a Packet for Each New Doctor
When consulting a new doctor (or interviewing a prospective one), create a packet of your medical records including test results and any applicable images/X-rays.
Your A-Fib Binder holds all the information you will need.
Consider sending your packet ahead of time. (But bring an extra copy with you. Don’t be surprised if some doctors didn’t have time to read it beforehand.)
Remember: Keep Your A-Fib Binder Up-to-Date
After each doctor visit, add your handwritten notes from your notebook, such as changes or additions of prescription medications or supplements and copies of any tests, referrals to other medical professionals, etc. Also, update your ‘Personal A-Fib Medical Summary’ when necessary.
Your A-Fib Binder is a Valuable Resource.
It will help you find your A-Fib cure!
New! 2 Free Worksheets: Doctor’s Visit Prep and Medication Inventory List
Free Offers & Downloads: As a service to Atrial Fibrillation patients, we offer FREE downloads of our own worksheets and special reports as well as useful FREE services or downloads from others serving the atrial fibrillation community. Click to visit the page to access all our FREE stuff.
Doctor’s Visit Prep Worksheet
I’m especially pleased to find this worksheet as I have long felt the need for patients to carry in a list of topics to discuss with their doctors.
For A-Fib patients, we encourage everyone to take notes during their appointments in a designated “A-Fib Notepad“. This prep worksheet helps you identify and list goals before your visit!
Doctor’s visits can be stressful, especially when you have a list of concerns or questions and want to make sure you don’t forget them.
This Doctor’s Visit Prep worksheet from SingleCare.com encourages you to organize your thoughts, questions, and symptoms before hand. It helps to make the best use of your and your doctor’s time for a productive, efficient office visit. Download this free .PDF worksheet. Keep several copies in your A-Fib binder or folder.
Keep an Inventory List of Your Medications
During office visits, your doctor or other medical healthcare providers often ask you to verify or update your medication list.
This FREE form from wordtemplatesonline.net helps you keep an up-to-date inventory of your medications. And because they may interact, you should also list over-the-counter drugs, vitamins and mineral supplements, too.
Download the Medication Inventory List worksheet and remember to save to your hard-drive.
Because your medications can change over time, print several copies of the blank form so you will always have a clean copy ready to use. (Keep with your A-Fib binder or folder.)
Be Ready for a Medical Emergency: Carry a copy of your medication inventory in your wallet as part of your Portable Medical Information ‘Kit’.
What medical information should you carry with you? To learn what and how to carrying your information, see our article, Your Portable Medical Information Kit.
Smartphones: Emergency Medical ID Info Access, No Passcode Required
Early cell phone users were able to list critical medical condition information (such as Atrial Fibrillation) as an “In Case of Emergency” (ICE) contact in their Contacts folder. But today’s smartphones are passcode protected. So, is there a work around for today’s smartphones? Yes!
Smartphone Can Still Offer Emergency Medical ID
In an emergency—if you are in an accident, fall ill or unconscious—your smartphone can still provide your critical medical information such as medication you are taking (i.e., a blood thinner or anticoagulant), your known allergies, and your blood type.
You can set up your smartphone so that first responders can access this information without needing your phone passcode. As they say…there’s a app for that (or built-in) on your iPhone or android phone!
iPhone Medical ID access button
Apple iPhone
The Apple iPhone has this feature built directly into the iOS Health App under the Medical ID section. After you enter your personal medical data and other facts, you can toggle “Show When Locked”.
Your keyboard will then display a “Medical ID” button to reach your preset medical information. First responders simply press the button.
How to: For step-by-step instructions for an iPhone, go to Set up your Medical ID in the Health app to learn how.
Android Smartphone
Android smartphone Medical ID access message
To add this emergency medical info feature to Android smartphones, you have several options depending on the specific phone.
• For Android phones, go to Settings and select “Emergency Info” or “Medical”. (For the Google Pixel phone, use the dedicated app called “Safety”)
• Or, you can download the free Medical ID app from the Google.com app store.
Watch the video: To make setup easier, you may want to watch a how-to video:
• How to Create a Medical ID on an Android Device (Did You Know?) from BridgingApps (2:12 min)
• How to Set Up Medical ID on Android (Samsung Galaxy & Google Pixel) by Quick Tutorials (1:56 min)
Setup it Once and You’re Prepared
Whether you are using an iPhone or an Android smartphone, and whether you are using a built-in feature or downloading an app, either way you are prepared.
Emergency first responders will be able to view your medical details despite using a passcode protected smartphone.
What medical information should you compile and carry with you?
See our article: Your Portable Medical Information Kit.
Which Comorbid Risks Are Making Your A-Fib More Severe? Do You Have Them Under Control?
Most A-Fib patients have at least one concurrent medical condition, i.e., comorbidity, that makes Atrial Fibrillation symptoms more severe and makes treating A-Fib more difficult with increased risk of complications. They can also affect the longevity of a treatment such as a catheter ablation.
Concurrent Medical Conditions
Concurrent conditions, or comorbidities, are risk factors that can interfere with the biological mechanisms or processes (pathogenesis) of your A-Fib. The leading concurrent conditions affecting Atrial Fibrillation patients are:
• Sleep Deprivation
• Obstructive Sleep Apnea
• Diabetes
• Hypertension (high blood pressure)
• Heat Failure
• Air pollution
• Respiratory Disease
• Chronic Kidney Disease
• Mental health disorders
Where to Start: When Was Your Last Physical Exam?
Check with your doctor or healthcare providers for the date of your last physical. If it’s been over a year, schedule an exam. You may find that you have undiagnosed conditions exacerbating your A-Fib.
Tip: You can request to have your blood draw/urine lab tests be done beforehand so you can discuss these findings during your physical exam along with the in-office testing.
At your exam, your blood pressure will be checked, an ECG of your heart taken, etc. revealing if there are undiagnosed problems. Blood draws and a urine sample will later reveal if you have hypertension, diabetes or kidney disfunction.
For obstructive sleep apnea, you may need to talk with your cardiologist/electrophysiologist to request testing.
Comorbidities and the Impact on Your Atrial Fibrillation
Sleep Deprivation: acute sleep deprivation increases your risk of A-Fib 3-fold; Most of us are now sleeping about 6.5 hours a night vs. in the 1960s we were sleeping 8.5 hours. To reduce the risk of A-Fib or lessen its symptoms, target rejuvenating, restorative sleep.
Obstructive Sleep Apnea (OSA): At least 43% of patients with Atrial Fibrillation also suffer from Obstructive Sleep Apnea. Patients with obstructive sleep apnea repeatedly stop and start breathing while they sleep. It occurs when the muscles supporting the soft tissues in the throat relax, the airway is narrowed, and breathing is momentarily cut off. Patients receiving CPAP therapy appear to have a lower risk of A-Fib recurrence after A-Fib ablation.
Obstructive sleep apnea can now be identified through an at-home sleep test (available by prescription). (Your cardiologist/electrophysiologist may need to order this test.) If diagnosed, more testing may be required to determine your treatment.
Diabetes Mellitus: Approximately 15% to 25% of patients with atrial fibrillation also have diabetes mellitus (a disease where the body cannot control blood sugar properly). It may predispose patients to structural, electric, and autonomic changes in the heart. Glycemic control has been associated with reduced risk of A-Fib. Blood sugar control may reduce episode frequency.
Hypertension (high blood pressure) is the leading modifiable risk factor for atrial fibrillation affecting an estimated 70% of A-Fib patients. Managing blood pressure should include the contributing lifestyle factors of obesity, physical inactivity, and diet.
Heart Failure: A-Fib and Heart Failure share common risk factors and frequently coexist. They can cause or exacerbate each other. It’s estimated that about 34% to 40% of A-Fib patients have or wil develop Heart Failure.
Air Pollution: Four meta-analyses have demonstrated that increased short-term exposure to air pollution is associated with a higher risk of A-Fib.
Respiratory Disease: Chronic obstructive pulmonary disease (COPD) is present in up to 23% of A-Fib patients, and COPD is associated with a 2-fold increase in A-Fib risk.
Chronic Kidney Disease (CKD) Approximately 30% of patients with Atrial Fibrillation also have Chronic Kidney Disease (CKD)—a condition where the kidneys are damaged and cannot filter blood well. CKD promotes A-Fib through chronic inflammation, volume overload, and electrolyte imbalances. Conversely, A-Fib reduces blood flow to the kidneys and increases the risk of ischemic stroke and heart failure.
Mental Health Disorders: Stress, psychological factors, and the state of one’s mental health can influence the occurrence, symptoms, treatments, and outcomes of A-Fib. The risk of A-Fib can be from alcohol or illicit substance misuse, lifestyle risks, or side effects of mental health medications.
What You Can Do to Lessen the Impact on Your A-Fib
It’s crucial to learn if you have any undiagnosed concurrent medical conditions and then get them under control. If needed, set up appointments to discuss any newly identified concurrent conditions. Your healthcare team can address each with appropriate medication, diet changes or other treatments, or referrals to specialists.
For your known comorbidities, review your current treatment plans for any adherence issues. Are you having difficulty with medication, following dietary plans or keeping appointments? Discuss with your doctors.
The Bottom Line on Comorbid Risks
Discovering unknown concurrent medical conditions and controlling known comorbidities can have a direct effect on your existing A-Fib symptoms, reduction in the frequency and intensity of episodes, maintenance of normal sinus rhythm and improved Quality of Life.
Take action to reduce the risk of these A-Fib-related complications, and improve your outlook for effective and long-term success of your A-Fib treatment plan.
Remember to Seek Your A-Fib cure. Don’t just aim to ‘manage’ your A-Fib with medications. It will all be worth it when you no longer suffer under the burden of Atrial Fibrillation.
Resources to Help You
Below are some resources to help you learn more about your Concurrent Medical conditions. (You can also open the drop-down ‘References’ tab below to see the many original research references used to write this article and read them yourself.)
Personal A-Fib Stories of Hope
Under our Personal A-Fib Stories of Hope, over 100 A-Fib patients have written about their journey to a life free from the burden of Atrial Fibrillation. You may find solace and encouragement and learn from their many ‘Lessons Learned’.
To help inspire you and help you find a story by subject matter, we cross-referenced stories by five major Themes/Topics. We encourage you to look for stories similar to your own. Go to Personal A-Fib Stories of Hope.
An Interview with Dr. John Mandrola: A-Fib Best Treated by Changes to Diet and Lifestyle, Says Dr. John Mandrola
Dr. John Mandrola, MD, cardiac electrophysiologist, Louisville, KY, on the impact of lifestyle factors on patients with atrial fibrillation, metabolic risk factors like obesity, poor diet, sleep apnea, alcohol intake, and lack of exercise;. Managing these risk factors can reduce the risk of stroke, and make a significant impact on the patient’s heart rhythm and overall health. (5:29) Click here to go to video.
Reminder: Schedule a Physical Exam. You may find you have undiagnosed conditions exacerbating your A-Fib.
Selecting the Right Cardiologist: 10 A-Fib Questions You’ve Got to Ask & What Their Answers Mean
I recently updated this post from a few years ago. This is a reminder of one of the several free downloads we offer to help you in your efforts to free yourself from the burden of Atrial Fibrillation. For others see “Free Reports, Worksheets and Downloads“.
Searching for the right cardiologist or electrophysiologist for your Atrial Fibrillation? It’s not any easy task. It’s important you match the right doctor to your treatment goals. Not just any cardiologist will do.
Read our page, Finding the Right Doctor For You and Your Treatment Goals, and How to Start Your Search. Since Atrial Fibrillation is an electrical problem, you should see a Cardiac Electrophysiologist (EP)—a cardiologist who specializes in the electrical activity of the heart and in the diagnosis and treatment of heart rhythm disorders.
Develop a short list of EPs and schedule interviews with each (don’t be shy about this. They will be “interviewing” you too to determine if they are the right doctor to help you.)
Remember: This is your heart we’re talking about here. Be bold! Remember: You must be your own best patient advocate to find the right doctor for you and your treatment goals!
Download Our Free Worksheet: Questions for Doctors
To help you scrutinize prospective doctors, we’ve written a set of interview questions. Our Questions for Doctors worksheet has the questions to ask each doctor and an area to write down their responses. Download our free worksheet. Print a copy for each doctor you talk to.
Afterwards: Learn How to Interpret the Answers You Received
Back home, study your notes about each doctor. To ‘interpret’ the doctors’ answers, see our article, “Choosing the Right Doctor: 10 Questions You’ve Got to Ask (And What Their Answers Mean)“.
We’ve included the various responses you might receive, and what each response means to you when searching for the right doctor for you and your treatment goals. The answers should help you narrow down your choices to the right doctor for you.
DON’T FORGET: File your worksheets and other notes in your A-Fib binder or folder for future reference (later, you might want a second opinion).
Download the FREE Questions for Doctors .PDF worksheet and save to your hard drive.
(separate browser window will open). Print multiple copies.
Updated: What is Your Portable Medical Information Kit?
I’ve updated this page with the newest examples (with links to each) of how to carry your personal medical information with you, but it all starts with knowing what information you should compile.
When you have A-Fib and you’re taking a blood thinner or other medication, you may wonder if you should carry an emergency I.D. card or wear a medical bracelet.
According to a paramedic with 25 years of experience, emergency measures to stop bleeding such as compresses, tourniquets, etc. will be used whether or not the paramedic knows one has A-Fib and is taking a blood thinner like Coumadin or the newer Direct Oral Anticoagulants (DOACs) like Eliquis and Xarelto.
But, in general, it’s a great help to emergency personnel if you carry one or more forms of emergency medical ID.
Dr. Todd Cohen, the author of the book, The Patient’s Guide to Heart Rhythm Problems, calls it a “portable medical information kit”. …Continue reading to learn what to include in your “portable medical information kit”…-and the various ways you can carry the information with you…->
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New “2023 Guideline for the Diagnosis & Management of Atrial Fibrillation”
Links updated: 12-21-23
Important for all A-Fib patients: The newly issued 2023 Guideline for the Diagnosis and Management of Atrial Fibrillation. The guideline includes new evidence to guide your cardiologist and electrophysiologist in the treatment of your Atrial Fibrillation. It was last updated in 2014 and supplemented in 2019.
Cardiologists, electrophysiologists, surgeons, pharmacists, patient representatives and other stakeholders all collaborated on the updated recommendations.
First issued in 1980, the American College of Cardiology (ACC) and the American Heart Association (AHA) develop and publish these guidelines without commercial support, and members volunteer their time to the writing and review efforts.
ACC/AHA develop and publish these guidelines without commercial support, and members volunteer to write and review them.
ACC/AHA/ACCP/HRS: The 2023 Guideline is endorsed by four medical organizations: American College of Cardiology (ACC), American Heart Association (AHA), American College of Clinical Pharmacy (ACCP), and Heart Rhythm Society (HRS).
A Few of the Important Updates for Patients: I am still reading/studying this document—it’s 171 pages long. Here are a few updates that reflect important shifts in the treatment of A-Fib patients:
• Stages of atrial fibrillation: recognizes A-Fib as a disease continuum that requires a variety of strategies at the different stages;
• A-Fib risk factor: recognizes lifestyle and risk factor modification as a pillar of A-Fib management to prevent onset and progression;
• Catheter ablation of A-Fib: can be first-line therapy; Recognizes the superiority of catheter ablation over drug therapy for rhythm control;
• Left atrial appendage occlusion devices: recognized for safety and efficacy.
Steve Ryan at the 2023 AF Symposium
If you read A-Fib.com regularly, you know these topics have filled my posts for years. I write about these topics after reading the newest research, evidence and findings, querying the experts and learn the latest innovations at the annual AF Symposiums from presentations by leading electrophysiologists, cardiologists, scientists and researchers (read my 2023 AF Symposium posts).
I’ll write more about these changes.
You Can Read it Yourself. It’s available on the websites of the American College of Cardiology (JACC.org) and the American Heart Association (ahajournal.org).
Newly released: 2023 ACC/AHA/ACCP/HRS Guideline for the Diagnosis and Management of Atrial Fibrillation: A Report of the American College of Cardiology/American Heart Association Joint Committee on Clinical Practice Guidelines; Issued by American College of Cardiology/American Heart Association Joint Committee on Clinical Practice Guidelines; See www.jacc.org or www.aha.org.
September is A-Fib Awareness Month – Get Our Free Report for Families
When a patient is diagnosed with Atrial Fibrillation, family members often struggle to understand what their loved one is going through. With A-Fib, you don’t look sick.
While A-Fib impacts the patient’s health and quality of life, it also affects the lives (and often livelihood) of their loved ones and co-workers. They will have many questions.
September is A-Fib Awareness Month: Celebrate and Help Your Family Understand
Help your family understand how A-Fib make you feel and how it affects you.
During Atrial Fibrillation Awareness Month, we make it easy. We’ve compiled the answers to the most often asked questions from families into a special free report: The Top 10 Questions Families Ask About Atrial Fibrillation.
Download the FREE 5-page .PDF Report here-> The Top 10 Questions Families Ask About A-Fib. Print it, or, to keep a copy, SAVE the PDF to your hard drive.
Help Us Promote A-Fib Awareness
Because A-Fib runs in families, urge your immediate family members to discuss A-Fib with their doctors. Encourage your friends over 60 years old to do the same.
Pass this post on to your family, friends and co-workers. Encourage them to download the FREE 5-page PDF report The Top 10 Questions Families Ask About Atrial Fibrillation (and the Answers).
Why not post to Facebook, Twitter or LinkedIn, too? (It’s easy. Use the Share buttons below.)
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Magnesium IV to Stop A-Fib
We have long advocated the benefits of Magnesium for A-Fib. (See Magnesium Long-Life Insights for A-Fib Patients.)
Intravenous Delivery: A recent randomized controlled double-blind study found that Magnesium delivered directly into the bloodstream (Intravenous, i.e., IV) can produce both rate and rhythm control when used for A-Fib patients in the emergency room (ER).
The Good News: This study from the University of Monastir, Tunisia, found Magnesium IV is the fastest way to improve Magnesium levels and is very effective in restoring A-Fib patients to normal sinus rhythm.
The Bad News: In U.S. emergency rooms, Magnesium IV is not a standard treatment for A-Fib patients (though it may be used prior to cardioversion). (Dr. Julian Whitaker in Newport Beach, CA performs this therapy (www.drwhitaker.com).)
One of our Advisory Board members wrote me about his large facility’s experience with Magnesium IVs, “A few years ago we tried and stopped because of futility.”
Bottom Line: So it’s an interesting research study, but don’t look for a Magnesium IV if you end up in the ER with an A-Fib episode.
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.
