In this interview, we speak with cardiovascular patient researcher and advocate Debbe McCall about her experience with atrial fibrillation (AFib). Debbe is the owner at Rowan Tree Perspectives Consulting, a patient representative to the FDA’s Cardiac Drug and Device Advisory Committee, Facebook moderator of the Atrial Fibrillation Support Forum, and Chair of the Steering Committee of the Health eHeart Alliance.
Tell us about your background in healthcare.
I like to say that I started in healthcare as a child. Although my father’s side of the family is tall and slender, and live to be 99-105 years old, my mother’s side of the family is short and round — there is no other gentle way to put it! Growing up in the Deep South, everything was deep fried, on a stick, and covered in gravy. My mother is one of 9 siblings who all lived to adulthood, but 7 of them had heart attacks before age 50. At the annual family reunions, I would watch my relatives empty their bags and compare pills. I think I’m probably the only kid in junior high who asked for a Physician’s Desk Reference, a Merck Manual, and a Taber’s Cyclopedia Medical Dictionary for Christmas so that I could take them to the reunions and help decipher things.
They were always asking questions such as “which one is your heart pill” and “which kind is your blood pressure pill” and “why is your blood pressure pill different than my blood pressure pill.” I didn’t know anyone else lived differently, probably because I was an only child. When I later married in 1999, my husband’s side of the family was Christian Science. They were all getting to that magical age of things not quite working, and entering into a new world they knew nothing about. So I always joke that I was the “family tour guide” into healthcare. Fortunately, I really liked studying science, and I have now been in the healthcare field for 30 years, on multiple sides of the exam table. I’ve enjoyed the business, HR, recruiting, and operations sides of healthcare, less so much the accounting part.
I worked hard not to have my maternal family medical history, and when I reached my 50th birthday and hadn’t had a heart attack, I figured I was home free. Then a few years later, on March 16th, 2009, I woke up and something was wrong. I had been taking my vital signs every morning for decades, so I knew what my history could be.
Tell us about your experience with AFib. Is it true you had symptoms for almost a year before being diagnosed?
Honestly that is quite common with AFib, particularly in women, because when we talk to the doctor we say, “my heart feels jumpy, I feel nervous and anxious.” For many women, the younger they are, the harder it is to get diagnosed. Young men have an even more difficult time — they’re told that they’re simply stressed and working too hard, and to relax. When I woke up on March 16th, my blood pressure was all over the place and my pulse was close to 200, but my blood sugar was fine. I tried to go about my day while keeping check of my symptoms, but kept thinking, this is getting worse and worse. The entire episode lasted 18 hours. I am often asked why I didn’t go to the ER. At the time, there were 2 hospitals in town that were owned by the same organization, and both had recently failed their Joint Commission accreditation. I was not walking into those ERs!
That first time experiencing symptoms, I honestly thought it was a one-off. But then it kept happening, and each time I would document it. After about a month, and a half dozen of these events, I went to my primary care doctor. She said something was definitely up and sent me to the brand-new cardiologist in town. He did a 24-hour Holter monitor, and just like when your car doesn’t make that funny noise at the mechanic’s, my heart was asymptomatic for 24 hours. This is extremely common with paroxysmal AFib. I also did a nuclear stress test and everything was clear. Afterward, this cardiologist actually reached over, patted me on the forearm, and said, “it’s anxiety or menopause, go back to your primary care for medication,” and walked out of the office while I sat there thinking, please let me have a longer monitor! When I look back now, I should have gotten a second opinion with another cardiologist and gotten a longer monitor. Both my primary care doctor and I knew my symptoms weren’t anxiety related. She put me on a beta blocker because my heart rate was 160-250 with AFib, and that is hard on the heart for 16-18 hours. It was very consistent. I would wake up with AFib, it would last all day long, and I would convert at night. I’d be exhausted the next day, which again is very common for AFib, because your heart has essentially run a marathon. We ruled out sleep apnea, a common trigger particularly for something that starts at night or early in the morning. So I started eliminating things from my diet — dairy, grains, and every single protein I loved — but was still having AFib events once or twice a week for 16-18 hours. My primary care doctor even left a standing order at her front desk for me to come in and get an EKG on request without a doctor’s appointment. Almost a year later, in March, it was finally documented as AFib.
In those 10 days between getting diagnosed and going back to the cardiologist, I spent all of my time researching. The cardiologist started me on warfarin and digoxin, which was the only option at the time. I asked him, “why are you choosing digoxin first? I want to understand.” The cardiologist answered, “That’s my decision, not yours.” I replied, “Well, I have to take it, so I get to have a say.” So he agreed on aspirin and clopidogrel (which was in the guidelines in 2010), as well as sotalol. I had already failed 3 beta blockers and was on diltiazem at the time. Three weeks later, I had an appointment with a local electrophysiologist. By then, I had already failed the sotalol — I was experiencing raging insomnia from a very small dose. The EP put me on dronedarone, which increased my AFib from twice a week to every other day, so at that point, I started EP shopping. I had heard about ablation, and since I live between LA and San Diego, I called every single hospital nearby and got the first available appointment with every EP I could find. I interviewed 10 EPs. My symptoms were getting more and more severe and debilitating. In between the AFib and the recovery days, I was losing 4 days a week. Therefore, when an EP had a cancellation and could fit me in 3 weeks later for an ablation, I had it done in May 2010. The timeframe from diagnosis to ablation was about 7 weeks.
Tell us about this ablation and the integrative approach you eventually tried.
It was tricky. Unfortunately, I came down with a hospital-acquired infection after that ablation, so I was subsequently ill with a UTI, sinus infection, bronchitis, and early pneumonia over the next 3 months, all while juggling warfarin. I was in therapeutic range only 30% of the time. My AFib got worse — I went to 24/7 by month 3 — and at that point, my EP was talking about doing a second ablation. Knowing I didn’t want to have another ablation, I talked to some friends who practice integrative age management. They are an MD and RNP who have worked together for decades, and have both had ablations. They’re the ones who put me on nutritional IVs and got me started on magnesium taurate; within 3 days, I converted to a normal sinus rhythm and stayed there. By September I had started weaning myself off the meds with the help of my pharmacist. What I found interesting is that when I saw my EP that July, he told me that my ablation had failed. When I saw my EP in follow-up that December, he said his ablation was a success.
I stayed in normal sinus rhythm for almost 5 years, but I went through a very traumatic experience last spring, and that is what brought back the AFib. If I hadn’t gone through that, I think I would still be in normal sinus rhythm today. When the AFib came back, I was using an AliveCor monitor, I was documenting my events, and meds were cutting it down to about 90 minutes. However, I knew how this worked — I had been moderating an AFib forum on Facebook since 2010. So this time, I only interviewed 3 EPs. I give this advice to my AFibbers on the forum: pick the best who (meaning, who you think is the best EP) and the best where (meaning, where you think is the best hospital), and leave the how up to them. I think patients can often get lost in the minutia of cryo vs RF vs FIRM ablation, but if they pick a really good EP and a really good hospital, the “how” shouldn’t be on their list of worries. I had a FIRM-guided ablation in November 2015, and have been great ever since.
It seemed like with your first experience with AFib, everything that could have gone wrong during your diagnosis, treatment, and recovery, went wrong. Do you think that experience put you on the path to becoming an advocate?
Yes, although I also teasingly blame Mellanie True Hills from StopAFib.org! As part of my initial research to better understand what was going on with my AFib, I had joined 8 or 9 forums. I specifically remember on the Yahoo forum that Mellanie had mentioned she was coming back from yet another conference, so I sent her a private email saying I had a medical background and if she needed help along those lines, that I could help because her information had been so helpful to me. She said they needed someone to be the patient rep for the FDA, and she wanted to nominate me for that. It’s really snowballed from there.
Tell us about your involvement as a Patient Representative to the Cardiac Drug and Device Advisory Committees for the FDA.
Ideally, a patient rep is nominated by an advocacy group; they are a volunteer or a member of an organization (such as SADS or Mended Hearts) and not paid, because that can create some conflict of interest issues depending on where the organization is getting their funding. It was about a 9-month long vetting process (including background, conflict of interest, etc.). The patient reps are considered SGEs (special government employees), and I sit on an advisory committee. It has a designated federal officer, chair, a couple of FDA staff on the advisory committee, and there is always a patient rep, a consumer rep, and an industry rep, and anywhere from 6-14 specialists (doctors, pharmacists, and always a statistician, sometimes 2) all convening to discuss a drug, a device, or a biologic. What happens is I will get an email asking if I am available on a certain date to cover a specific topic, and have to answer yes or no. You have to go through the conflict of interest background every single time. About a month out, they send me information from the sponsor and from the FDA — that can be anywhere from 250-800 pages of clinical data. Then you convene, which is kind of like being on jury duty as you’re not allowed to talk to anybody and we can’t talk about it at lunch. Travel is involved — it’s always in DC — and the FDA reimburses me for travel. It’s usually an 8-5 day, and the FDA pays all of us that sit on the advisory committee — the doctors, statistician, and patient reps — the same rate. The industry rep never gets to vote, although the chair can ask for their opinion. On a device committee, the consumer, patient rep, and the industry rep do not vote, although the chair can ask for their opinion. However, the consumer and patient rep get to vote on drugs.
Tell us about your work as a Chair of the Steering Committee with the Health eHeart Alliance.
When the Alliance was first applying for funding with PCORI back in 2013, they reached out to advocacy organizations, StopAFib.org being one of them. Mellanie asked me to come along with her to do this. After phase I, the Steering Committee decided they needed an elected chair that would also be the patient PI for phase II. We put in our names and qualifications, and I became the elected chair last year. So I’m involved in all the working groups, I do a lot with PCORI and PCORnet, I’m doing more speaking on behalf of the Alliance and/or PCORI, and I’m attending all of our steering committee advocacy group patient meetings this year. In the fall I’m getting ready to do the StopAFib.org, ACHD, and AHA meetings. I’ll do about 100 days of travel this year.
Tell us more about your use of Twitter.
I had a Twitter account (@DebbeMcCall) when I attended last year’s StopAFib.org’s Get In Rhythm conference, but I didn’t know what to do with it at the time. However, the information from that meeting was so dense and so good, it was faster for me to type notes than it was to handwrite notes, so I began tweeting the information with pictures, thinking I could use it later on in the Facebook forum that I help moderate. People began following my Twitter account because of the information I was providing. Last year I did 200 hours of conferences, and over half of that was AFib specific. I want to be a good resource for both the clinical community as well as the patient community, so I tend to skew it a little more toward patient language. However, about half of my followers are clinicians and researchers, and the other half is comprised of patients.
As a Moderator for the Atrial Fibrillation Support Forum on Facebook (www.facebook.com/groups/AtrialFibrillationSupportForum/), what questions or concerns do you most often hear from patients?
Since our Facebook group is public, we get almost all of the newbies. Most forums tend to be closed, which can be beneficial because it’s more private, but a closed group also means limiting the audience. You also don’t know what the group dynamics are before joining. In our group, you can follow us and download shared files that are available without ever joining. We’re one of the few forums that will allow researchers and clinicians to join.
My goal is for more people to understand AFib, be aware of it, and ask about it. The question we are asked most often is “I was just diagnosed with AFib — what is it?” That is why I created an “AFib 101” document that can be downloaded on the forum. It’s not pretty, but it includes all of the questions we get asked most often. Other downloadable files on the forum that are popular with patients include “Questions to ask on your first EP visit” and “Ablation questions to ask your EP.” These were also created from questions on the forum.
What tips do you have for patients wanting to get more involved in their own care? What advice do you also have for doctors?
It’s important for clinicians to know that when patients first hear an AFib diagnosis, all they hear is that something is wrong with their heart — nothing else. If you’ve got the time at a first diagnosis visit, say to the patient: “You have AFib, it’s an unusual arrhythmia, and it carries a higher risk of stroke.” Then wait. Too many things are going on in a patient’s mind and emotional heart to absorb anything else after that. Once they’ve caught up after a few minutes, then they’ll start asking you questions and you can go from there — then you know that they’re ready to hear you. If you’re in a setting where you simply can’t do that, then say, “I realize it’s a lot to take in — here is some information on a printed handout to get you started.” I highly recommend that physicians look at online resources. StopAfib.org and My AFib Experience (http://myafibexperience.org/home; created through StopAfib.org and the American Heart Association) are always good places to start. Our Facebook forum was also vetted and listed as a trusted resource by 4 global heart rhythm societies last year in a consensus document in Europace. So instead of instructing patients not to look for information on the internet, be proactive and say, “these are the groups I recommend if you want to get more information. I’d like you to come in next week and meet with my nurse practitioner, who will set aside time to answer your AFib questions and get you started.” Also consider bringing in a pharmacist at some of these follow-up visits. The pharmacist is an underutilized and underappreciated specialist that can help with questions such as “is this going to interact with my warfarin?” or “is this going to make my Xarelto weird?” Also, a pharmacist has office hours 7 days a week!
My other advice to clinicians, particularly to EPs who do ablations, is to explain very carefully about the blanking period being 3-6 months. Strange things are going to happen, but it doesn’t mean the ablation has failed. Four months after my first ablation, the EP was ready to do a second one, but it turned around. My second ablation was so much easier.
This is the reason we created an AFib 101 document for patients on our Facebook forum. The information is presented in several different ways in the document, and since everyone learns differently, patients can read it all at once or in bits and pieces when they’re ready. We answer the same basic questions over and over again, including what causes it, contributing factors, and triggers. We also spend a lot of time answering questions on how to manage the anxiety associated with AFib. Some people do better with meds, some prefer prayer, mindfulness, even Tai Chi — find the thing that makes you happy. Another common question is about how to manage the brain fog associated with taking a beta blocker. The heart does not beat efficiently while in AFib, so giving a beta blocker to a patient with a lower oxygen saturation can make AFib patients feel slow. We’re not slow — we don’t have enough oxygen!
AFibbers are no longer >65 and retired with multiple co-morbidities. Approximately half of the members on our Facebook AFib forum are aged <55 and still working, with paroxysmal AFib being their first major diagnosis. Many are working full time, caring for children or elderly parents, or even considering a second or third pregnancy. AFib can severely impact work. A symptomatic AFibber will struggle to do detailed and timely projects, and it is harder with “beta blocker brain fog.” Employers and their HR departments know even less about AFib than GPs. It is rare that an AFibber can qualify for disability with an AFib diagnosis without an additional diagnosis. (I know of one who did after 5 failed ablations and lost her driver’s license.) It is “easier” for those in permanent AFib, as they frequently have a pacemaker, ICD, or heart failure diagnosis as well. An AFib diagnosis will often disqualify a patient for a license to be a commercial/private pilot or commercial driver, as well as many labor-intensive jobs such as a construction worker, firefighter, or UPS driver. Even in a two-income household, an AFib diagnosis can be a huge financial impact.
Patients and EPs also need to work together on having very clear post-ablation guidelines. If you tell a marathoner they can “resume normal activities in a week,” they’ll likely think this means it’s okay to run a 10K a week after their ablation. Would you tell a firefighter that it’s okay to return to full duty in a week? You have to sit down and ask the patient what’s normal for them. What would be their goal in 6 months — map out what kind of activity level they would like to have. I did this with my second ablation, asking the doctor, “how soon can I walk 5000 steps?” and “when can I return to Pilates?” and also “when can I fly?” If a doctor doesn’t have the time to address these questions, enlist your PAs and nurse practitioners.
Is there anything else you’d like to add?
The great thing about the work we’re doing with the Health eHeart Alliance is that we’re getting the patient voice to the researcher. Researchers look at disease differently — they want to examine the cells, the mitochondrial DNA, and why one drug is better than another drug. On the other hand, patients want to examine such questions as “how do I function with brain fog?” or “how much shortness of breath is too much?” Another really common question, particularly with patients who have had surgical ablation or open-heart surgery, is “why do we have so many personality changes that first year?” Until you ask a researcher, they don’t even know these questions exist. Patients offer unique insights because we are experts on our disease. The Alliance helps give patients that voice as well as the opportunity for leadership to be involved every step of the way.