Living with Afib Video by Mellanie True Hills
Living with Afib Session, from the 2015 Atrial Fibrillation Patient Conference
September 29, 2015
The Living with Afib session at the 2015 Get in Rhythm. Stay in Rhythm.TM Atrial Fibrillation Patient Conference was presented by StopAfib.org Founder and CEO, Mellanie True Hills, who spoke about:
- Dedicating the conference to Judy Currier
- Knowing your stroke risk
- Autoimmune diseases and afib
- Common issues, such as alcohol, caffeine, stress, diet, and exercise
- Vitamins and supplements
- StopAfib.org resources, such as the Get Started Learning About Afib Guide, News and Videos page, Patient and Caregiver Resources, Glossary, Mellanie’s EP Lab Digest articles, AtrialFibrillationBlog.com, and the StopAfib Discussion Forum
- Social media resources for afib
- MyAFibExperience.org, a collaboration of the American Heart Association and StopAfib.org
- Sign Against Stroke in AF Campaign and Task Force, including new patient empowerment materials that will be launched this year
Video watching time is approximately 64 minutes. Click below to watch the video.
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Mellanie: I’m going to talk about some of the things that haven’t been talked about yet, things such as living with afib, some of the miscellaneous topics that didn’t really fit into all the panels. Those of us who have afib know that living with it can be a challenge, especially for those who have symptoms. It can be awful, and it’s really hard for those around us to understand what it’s like.
[00:01:00] In fact, research in the Journal of Cardiovascular Nursing has shown that because AF is not considered immediately life threatening, our friends, coworkers and family members may not appreciate its effect on us. They may minimize our condition or dismiss our concerns and symptoms altogether. But afib may NOT be immediately life threatening — but it does put you at greater risk of stroke, five times greater risk than those without afib, which you’ve heard many times over these two days.
Afib is not benign either, as many people seem to believe. It is physically and mentally very stressful. It wears you down and its unpredictable nature can lead to anxiety, and for some people, even depression. Afib can take over your life and can destroy it.
[00:02:00] You’re constantly watching over your shoulder for the afib beast to strike, which is why those with afib have a worse quality of life than even those who have heart attacks. And that’s because once they’ve had the heart attack, they can get on with their lives. And with afib, you can never really get on with your life because you never know how it’s going to impact you.
So it’s important that you share with family members what afib does to you so that they understand, and that way, they can help you to cope with your afib. I’ll share some resources to help with that in a few minutes. It’s wonderful that so many of you brought family members with you so that they can better understand this condition. We also know that afib can be, in some cases, genetic, so it’s important for your family members, particularly your sons and daughters, to know that they could potentially be at risk and to be looking out for what the signs are, signs and symptoms of afib.
[00:03:00] Another important thing to do is to know your stroke risk. In your bags, you have these handouts and I want to encourage you to take those home and to know what your stroke risk is, to reassess it each year. Because with increasing age, our risk factors increase, particularly when you get ages 65 to 74, where you get one point on the CHA2DS2-VASc system. Then when you become age 75, that’s when you get two points, and that’s when you almost definitely need anticoagulants or blood thinners.
[00:04:00] That’s also when doctors become very concerned about the fall risk. It’s important to know…and this is just an aside, but this was something stated in the European guidelines a few years ago, that you’d have to fall 298 times in a year for your risk of a bleed to outweigh your risk of a stroke. It’s important to keep that in mind when you’re having the conversation with your doctor. This is really an important tool to take with you to your doctor to have the conversation. We actually came up with these just a few weeks ago and took these to the American College of Cardiology and gave pads of these to the doctors to also use in having conversations with their patients.
[00:05:00] Please look at any of those modifiable risk factors, which we talked about earlier today with the panel, and make sure that you’re controlling those, because that can decrease your stroke risk significantly, particularly on things like diabetes and heart disease.
As I often tell people, one of my missions is to create a stroke-free world. And this conference is one of the ways that we will do that. I’ve mentioned to some of you, the videos will be available on the website as soon as we’re able to get them out there for you. There’s no charge. We want you to be able to watch these again, to be able to share them with family and friends, and to make sure that those who could be at risk understand the risk factors and what they can do to potentially prevent afib.
[00:06:00] My concern about stroke, creating a stroke-free world, derives from some of my personal experience. One of my favorite uncles had a stroke – it was not from afib – and it was absolutely debilitating to him and to his family and to all of us. Then I have a friend, Judy Currier, who lost her sister to a massive deadly stroke. Judy’s sister’s afib had stopped and she thought she could stop taking her blood thinner, and she had a massive deadly stroke.
Judy is a member of our discussion forum. She was member number two when I started our StopAfib.org discussion forum back in 2008. And of course, I was member number one. And so it was really the two of us from the very beginning.
[00:07:00] A lot of people started joining us and she was like a mama bear. She would welcome everyone, she would help them figure things out. She really was a presence throughout the forum. When someone would say, “Well, I just don’t want to take a blood thinner because it’s too much trouble,” or “I’m just scared of it,” she was like a pit bull in helping them understand what their risks were and whether or not they really needed to be on blood thinner.
When I first met Judy, her doctors had left her in afib for much, much too long, and she was actually starting to lapse into heart failure and developing pulmonary hypertension, which is a lung issue. She had surgery and she was afib-free, but she had to go on oxygen and she had heart pauses after her surgery, so she had to have a pacemaker.
[00:08:00] She and I vowed together, several years ago, that we would not let this happen to others. When I started planning our first conference, she was instrumental in helping me develop the agenda.
Judy wanted to come here, but being on oxygen keeps her from traveling very easily, so she was not able to make the trip. Judy is brilliant and has such heart. I nominated her as a patient rep to the FDA, so she was really the eyes and the ears and the voice for us at the FDA. I nominated her along with Debbe McCall, who’s here in the room, and both have served well advocating for you at the FDA.
[00:09:00] Well, Judy’s here in spirit today, even though she can’t physically be here. Unfortunately, we lost Judy on Thursday, but her spirit lives on. It’s here in this room. I’m dedicating this conference to her, for her role in helping you and for what she will be doing going forward because together, we started this conference and hopefully these conferences will fan out and impact the world. Thank you. Thank you. I hope that you will help spread these to those who need to know about this.
Now let’s talk about how we can empower you. You’ve heard, over the past two days, that there are things that we can do to treat and to manage afib with medications.
[00:10:00] And if the medications don’t work, there are procedures. We talked about those yesterday afternoon. We also talked about how to prevent strokes. This morning, you heard about risk factors such as obesity, high blood pressure, diabetes, sleep apnea, and endurance exercise.
We’re starting to see some other things that are related to afib too, such as autoimmune diseases, things such as celiac disease and gluten intolerance, psoriasis, and rheumatoid arthritis. The relationship of afib and autoimmune diseases is quite new and it’s not well known. Many of your doctors may not know about it because the research is really just emerging. Recent research shows that atrial fibrillation is 40% higher in those who have rheumatoid arthritis than in the general population. That also increases stroke risk as well. Atrial fibrillation risk and stroke risk is also higher in those who have psoriasis.
[00:11:00] A newer relationship is celiac disease and gluten intolerance. We’ve worked with well-known researchers in New York City, one of whom is an afib patient. His hypothesis was published in the Heart Rhythm Journal a year or two ago, and it’s that afib could actually be an autoimmune disease. It’s something for us to be watching for. It’s something that if you have other autoimmune diseases, you may want to have conversations with your doctors to see are there things that you need to do or can do because of that.
Let’s talk about some other areas that are really not so evidence based. With the doctors here, we were really talking about evidence-based medicine, the things that we have lots of research for. They showed you the publications and the journal articles and the graphs and charts and all of those things that were evidence based, but there are a lot of things that are not evidence based but that we as members of the afib community have discovered and have shared with each other.
[00:12:00] You can search our blog, the AtrialFibrillationBlog.com. You can also go search on StopAfib.org for some of these terms, and there’s a little bit. Our blog is more around things that are not evidence based, many opinion pieces and things that are anecdotal that we share among the patient community, whereas StopAfib.org is much more evidence based. So there’s a lot of information about this on our blog, the AtrialFibrillationBlog.com.
These are often called triggers. The first of these triggers, and this is things to consider but not advice per se, are alcohol and caffeine. We often hear about alcohol triggering afib, and there’s been some discussion over the last two days about that as well.
[00:13:00] Interestingly, recent research has shown that coffee could be good for us. It has lots of antioxidants. The research is showing that maybe there’s not a correlation between coffee and afib, other than that it is good for us.
We also know that some alcohol, such as wines, has the antioxidant resveratrol, and that can also be good for us. So what’s going on there? Well, I believe that some of it could be dehydration. We know that dehydration can trigger afib and that alcohol and caffeinated beverages can be dehydrating. So could it be dehydration instead of alcohol and caffeine? It’s entirely possible.
I’m a big fan of Gerolsteiner water. That’s the German mineral water that we had bottles on the tables yesterday and some today.
[00:14:00] With Gerolsteiner, it has lots of minerals — particularly magnesium and potassium — that research shows us are important for our heart to operate properly. Many of us who have afib are deficient in magnesium and potassium.
I discovered Gerolsteiner about two decades ago, and it’s been my jet lag cure all along. And when I had afib a decade ago — I was paroxysmal in that I had afib that came and went — I could actually use Gerolsteiner water to convert out of afib. So that’s why we have it here for you. That’s why we asked them to be our official mineral water sponsor, which is a little unusual for an afib conference, but we wanted you to have it available to try it. If it converts you, please let me know, because right now I’m an experiment of one.
[00:15:00] I know that it worked for me but I don’t know if it really works for others. Although Joe Clifton is here, and with all the lights, I can’t see where Joe is. There he is right over there in the corner. He was here last time as well, and he said it works wonders for him, too. So maybe it’s an experiment of two at this point.
Another thing that folks in the afib community have found is that organic coffee works just fine and doesn’t cause afib for them, but not non-organic. Could it be the pesticides instead of the caffeine? It’s entirely possible. There’s a lot of anecdotal evidence in the patient community to that effect. So that might be something that you want to try, carefully of course.
[00:16:00] Then we talked yesterday, Dr. Day did, about stress. Some doctors still dismiss it because there really isn’t a lot of research. But we do have some stress management stuff on our blog if you want to check it out. Then we know that exercise is good overall, but exercise puts some people into afib and it brings others out of it. Of course, as we learned from Dr. Link, too much exercise can lead to afib and other heart consequences. We know that athletes, especially runners, bikers, marathoners, rowers, basketball players, and especially Olympic athletes, are more susceptible to afib since the atria, the upper chambers of the heart, stretch. That leads to scar tissue or fibrosis, which Dr. Marrouche talked about yesterday. That scar tissue can lead to afib. And so that can be partly responsible for the growing epidemic of younger people who have afib.
[00:17:00] Then there’s diet. There are a lot of different beliefs in the afib community regarding diet. Some people avoid sugar. That’s good because sugar is thought to be worse than fats for us — a lot of emerging research in that area. And then some avoid flours and grains, which is good for those who happen to have celiac disease or gluten intolerance. If you find that having something with flour or grains triggers your afib, then you might want to be checked to see if you have celiac disease or gluten intolerance.
It’s also common wisdom to avoid salt, especially for those with high blood pressure. But some research has shown that salt restriction may not be best for everyone. Some people are actually deficient in sodium. A few times when I’ve had tachycardia, or fast heartbeat, I’ve actually converted by drinking salt water. It may be that my diet is low in salt or maybe I don’t process sodium effectively.
[00:18:00] If you don’t eat salt, you might want to discuss with your doctor what the implications of that might be.
Then there’s the issue of vitamins and supplements. Many in the afib community are frustrated because their doctors can’t recommend natural products or supplements, and we wonder why not. Well, for one thing, there really isn’t much evidence. There are very few clinical trials into the supplements. Because of that, they’re not learning much about them in medical school. There’s not much for them to learn about supplements in medical school, so those tend not to be taught. But what we’re seeing is an interesting trend in that some of the academic medical centers, the medical schools, are starting to do research into vitamins and supplements. Hopefully, we will start seeing some emerging research as to what the impact of those are on those who have afib.
[00:19:00] We do know some things that are recommended for afib, such as fish oil and Omega-3s, and early studies show that those help decrease arrhythmias such as atrial fibrillation. But there have been more recent studies that have shown that there’s no effect whatsoever. Some people have claimed that the dosage of that was too low. There are some new studies going on, so the jury is still out and we’ll continue to look for what the impact might be of Omega-3s and fish oil on afib.
Then magnesium and potassium also have an impact on afib. We know that intravenous (IV) magnesium is often given in emergency rooms to help people convert. So, can taking supplements help? Well, many people in the afib community have found that magnesium glycinate helps.
[00:20:00] There are many forms, magnesium oxide and so forth — there are many forms but apparently magnesium glycinate seems to be the most effective form for that, and many of the other forms are really pretty much useless for those who have afib. Potassium and magnesium should go together.
We don’t have studies about that, but those are certainly things that you can explore if you’re wanting to try to figure out are you magnesium-deficient potentially. What might that do? Might it help? If you do take supplements, please make sure and bring a list of those with you to your doctor visits so that your doctor knows what you’re taking.
[00:21:00] They may say, “Well, these are pretty useless. You’re just throwing your money away,” but at least it’s important that they’re aware of it, because some of the supplements such as Gingko Biloba, ginger, and others, can actually interfere with warfarin (Coumadin), and can also interfere with some of the other medications that you’re on as well.
It’s really important for your doctor to know what those might be, because they could actually be decreasing the effectiveness of the medications that you’re taking. It may be possible to adjust the dosage and be fine with that. That’s really important for your doctor to now.
I’m going to detour for just a moment. Many of you filled out pre-conference questionnaires about what were the things that you wanted to take away from here and what were things that would really make a difference for you. Last night I went through all those very carefully to make sure and made sure that we had checked off most of them, but there were a lot of things that were still on there that I want to make sure that we do address today. One of those was: when do you know that you should seek further treatment?
[00:22:00] When I first interviewed Dr. Wilber several years ago for a video that’s on our website — he actually was the principal investigator for the THERMOCOOL Study for catheter ablation and we were doing an interview — I said, “When should patients consider catheter ablation? I’m starting to hear in the medical conferences that maybe sooner is better than later, and watch and wait is not a good practice.” He said definitely the sooner, the better, and two to three years is a really good window to consider having treatment, particularly if you’re going to have a surgical procedure or a catheter ablation. But don’t be disheartened if you’ve had afib for longer than that, because that certainly doesn’t mean it can’t be fixed later but it may take a bigger hammer, a bigger gun, to actually do it.
[00:23:00] For those of you who were recently diagnosed, it’s a good thing to be having the conversation with your doctor about how much afib you’re having and when you should really consider what that next step might be so that you don’t get to the point where your afib is set in so much and you have so much scar tissue or fibrosis in your heart that it becomes very difficult to fix the problem.
Waiting doesn’t typically make afib better. For those who have afib that’s related to surgery, called post-surgical afib, they may have a few episodes and then it goes away. But for most people, you don’t just have one episode and never have it again; it will come back at some point and it may become progressive.
[00:24:00] As it starts getting worse, it’s certainly important to have that conversation with the doctor as to when will be the right time to get something done —especially if medications are starting to fail — when is it right for me to consider other things?
Certainly, you’ve heard some of the things this morning, and this is a little bit of an aside, but Dr. Redline talked about sleep apnea. What happened with me is, I had my surgery. I had the minimally invasive surgical ablation, which is where they go in under the arms and then the rib cage. I had that nine and a half years ago. Within about a year or two, I was starting to read research that was correlating afib and sleep apnea, so I asked my doctor, my cardiologist, if I might have sleep apnea.
He said, “Well, let’s get you tested.” As soon as I found out I did have sleep apnea, I knew that it was time for me to really take that seriously.
[00:25:00] It’s hard adjusting to a CPAP mask for some of us, especially those of us that are claustrophobic, but I knew that the option was possibly to have my afib come back. I credit being religious treating my sleep apnea, and my mask, as being the reason that I’ve been afib-free for nine and a half years.
There’s been a lot of research that shows that catheter ablation is more successful, and Dr. Day talked about it because it was his group that actually did the research. Catheter ablation is more successful in those who are treating their sleep apnea than those who don’t. We know that untreated sleep apnea is responsible for about 85% of the failed cardioversions and many failed catheter ablations.
[00:26:00] So if you’re failing cardioversions, failing catheter ablations, considering being tested for sleep apnea is a really important thing. And I would do that before I had the procedure.
We don’t know what the impact is on surgery because there have been no studies of that. But if you’re having a procedure and you know that you have sleep apnea, then you can take your CPAP and your mask with you to the hospital and they can work with you to make sure that all of this is used properly so that you decrease your risk of a recurrence of your afib after your catheter ablation. So that was just an aside but I think it’s really important for us to be aware of some of these kinds of things and their interrelationships, things that can really make a difference for us.
[00:27:00] Here at the conference, we’ve been focusing on the problem of afib disrupting your life and helping you to identify some of the potential solutions, but the problem that you may still have when you leave here today is that you’ve heard so much and you don’t know how to process it all. You don’t know necessarily how to figure it out. Let me encourage you to check out some of the resources that potentially can help you and your family members to figure it all out, such as StopAfib.org.
As I mentioned, I’m an afib patient. I’m a survivor. I had blood clots and a close call with stroke on my first afib episode back in 2003. I was never stable on blood thinners, for genetic reasons — that was before the new blood thinners — so my family wouldn’t let me go anywhere by myself for fear that I’d have a stroke when off by myself. Afib takes a huge toll. For me, it was emotionally exhausting; it was physically draining. It takes a financial toll as well, as we’re the frequent flyers of the emergency room.
[00:28:00] After 22 months, I had my surgical procedure. As I told you, I’ve been afib-free for nine and a half years. But I couldn’t stand on the sidelines and watch everyone else suffer with this condition. I knew I had to do something, and that’s why I started StopAfib.org, to help those living with afib. That’s not just the patients, but that’s the family members too.
StopAfib.org is an online resource where you can become a proactive partner with your health care team by understanding, by having more information about afib so that you can have better conversations with your health care providers. We have search, which is in the upper left.
[00:29:00] And then you can sign up for our newsletter there as well, which is in the upper right, and we’ll alert you to the latest news stories about atrial fibrillation, reports from medical conferences, and things that are important for those with afib to know.
You can also access our Afib Services Locator, which tells you information about some of the doctors that treat afib, and our blog and our discussion forum from there as well. We’re proud to be the number one arrhythmia site worldwide and in the top five heart disease sites. Last year our traffic was 2.1 million page views and 950,000 visits from 195 countries. Our content can be translated into 90 languages. Where it says up in the upper right, “select language,” you can drop that down and choose from 90 languages.
[00:30:00] Let me call your attention to something, the HON code seal — that red, white, blue, and black seal that’s in the lower right of the screen — is to help people sort out the junk from the good stuff when it comes to medical sites. The HON code seal comes from the Health On the Net Foundation in Switzerland, which audits and certifies medical websites. We have to go through an annual audit. You can look for that seal on websites to know if they’re credible, trustworthy medical websites. You can click on the seal — ours is in the lower right of all of our pages. You can click on the seal to go read their latest audit.
If you’re new to afib, then we have a “Get Started Learning About Afib Guide” — there’s a button on all our pages that you can click on to get there. It helps to learn about afib, and about the risk and about treatment, and so forth.
[00:31:00] Then one of the things I’m proudest of is the News and Videos page where you can find the latest afib news and research, video interviews with doctors and reports from medical conferences, transcripts from our twice yearly live chats that we have for patients with the doctors at Cleveland Clinic where they answer many of the really technical questions for us, and then videos from our patient conferences such as this one.
In addition, we have a news feed from Yahoo News [update: it’s now a Google News feed] that’s at the bottom of the page so that you can always see it scrolling. If you check it daily, you’ll actually be able to see the latest news about afib.
Here’s our Patient and Caregiver Resources page, and it’s a comprehensive collection of links to professional organizations and all the various doctor organizations, guidelines for treatment of afib that come out of the professional societies, medication resources, afib resources, support groups, etc.
[00:32:00] Our glossary can help you to interpret the words that your doctor may use and to know the terms that maybe you can use with your doctor to facilitate some of the conversation. So doctors can be translated into plain English, or if we know some of the terminology, we can also use that with doctors to facilitate the conversation.
Then, in the pre-conference questionnaires, one of you mentioned that basically the doctor said that patients who search the internet are all neurotic, so how can you convince doctors that there are actually some good sites out there? Well, one of the things that we’ve done, is to provide patient cards that we give to a doctor so that they can pass those along to patients, so that doctors have a chance to check our stuff out and make sure it’s good before they start giving it to patients.
[00:33:00] But when they start looking and they see all the medical societies out here and things like the American Heart Association and American Stroke Association out here in our Patient & Caregiver Guidelines, then they know that we’re providing links to the resources that afib patients need to know.
That’s really important to help doctors understand that there are a lot of good resources out there if they’ll just go check them out. So feel free to recommend sources to your doctors so that they’re able to then pass them on to the rest of their patients. And I already mentioned two of these articles yesterday. These are articles that I did for EP Lab Digest, which is a medical journal, a medical publication. One of them was about bridging the afib communications gap between patients and their health care providers, and the other was about trust between patients and health care providers.
[00:34:00] A third one that I would recommend that you may want to check out is called Gender Matters: Why Afib is More Fatal for Women. More men than women have afib, but more women die from afib, from the strokes caused by afib. There’s some great medical information in that article, as well as discussions around the guidelines. So I’m going to break and answer — I’m trying to do some of the questions interactively or do the questions as I go along, as we hit a relevant point —and so there were a couple of things that came up yesterday in some of the questions that people were asking, that I think are important for me to just stop here and address. One of those was around the definitions of the different types of afib, so this alludes to the guidelines which I referenced a moment ago, and also alludes to stroke risk.
[00:35:00] You heard yesterday terms like paroxysmal, persistent, longstanding persistent, but I’m not sure that they were really effectively defined, so let me define those for you at this point. Paroxysmal afib, according to the latest U.S. guidelines that came out last March — I was fortunate enough to have been part of the guidelines process; as far as I know, I’m the first non-clinician to be part of the American Heart Association American College of Cardiology’s Guidelines for afib — there was a change in the definition of paroxysmal afib as a result of those guidelines. So there’s confusion among doctors, and the guidelines were trying to actually clarify that.
[00:36:00] Paroxysmal used to be considered if you came and went in afib in seven days or less and you converted automatically by yourself without having to go for a cardioversion. Now the definition is, afib that comes and goes, lasts less than seven days, and it doesn’t matter how you convert. So if it’s less than seven days, you’re still paroxysmal. If you have afib that lasts longer than seven days, then you are persistent, and that’s typically considered continuous in most cases. Once you reach a year of afib that’s continuous, then you become longstanding persistent. And so this is how it’s defined in the current guidelines.
There are definitely some implications there for stroke prevention, so I wanted to mention that as we were talking about gender matters. If you want to find that particular article on why afib is more fatal for women, go put the term “gender matters” in the search box in the upper left of StopAfib.org.
[00:37:00] Now let’s move on. This is the blog that I referenced, AtrialFibrillationBlog.com, and you can see my article on “Can avoiding dehydration prevent Holiday Heart Syndrome?” Holiday Heart is basically when you’re having too much alcohol and partying during the holidays. There’s a picture there of Gerolsteiner. And that may be an article that you want to check out because it gives a lot of other information about how to manage and prevent dehydration.
We also have a discussion forum and some social media as well that we use for communicating among the patient community. I encourage you to come to our discussion forum, join in the conversations.
[00:38:00] Stacy and I were talking yesterday about challenges with sleep apnea and getting used to a CPAP and those kinds of things. If you have questions like that, come ask them. There are a lot of people in our forum who have sleep apnea, who are on CPAPs, and can share lots of ideas and tips for helping you adjust to it. A lot of great people on the forum. Many of you are in our forum already, so I would encourage you to come participate there and get answers to your questions.
Of course, I mentioned social media. We’re also active on social media where we can support people as well. In addition to our forum, there are a lot of other forums. The first one up there is the Facebook Atrial Fibrillation Support Forum, which is run by our friend Debbe McCall, who is sitting back there in the back. Debbe, do you want to wave? There she is — she’s the moderator of that particular forum. There is also an Atrial Fibrillation Information Exchange. There’s afibbers.org, and then there are some Yahoo groups as well, related to afib.
[00:39:00] Now this is a source that’s not on StopAfib.org. There is a collaboration that’s ongoing between American Heart Association and StopAfib.org, where we have created an innovative and personalized experience for those who have afib. This is supported by Janssen [Pharmaceuticals], which is one of our sponsors of this event as well.
What you do is, when you go there, you can select your age cohort. So we have various cohorts: under 18, 18 to 34, 35 to 49, 50 to 64, 65 to 74, and then 75 plus.
[00:40:00] Then from there, you fill out a profile about your type of afib, medications you’re on, procedures you’ve had and so forth, and other related conditions like sleep apnea. That way, we can provide you personalized information. This was phase one. We’re working on the launch of phase two, but this provides us a way to give you personalized information.
There were some flyers out there on one of the tables about MyAFibExperience.org, so you may want to take some of those. There’s also an Afib Five Guide that the American Heart Association sent us to make available to you as well, so you may want to pick up one of those, also.
Finally, StopAfib.org is co-chair of the Sign Against Stroke in Atrial Fibrillation Task Force. That’s really our attempt to wipe out strokes worldwide.
[00:41:00] Back in 2011, we formed the Steering Committee and brought together 39 patient organizations from 20 countries for a Global Patient Organization Summit. At that meeting, the Global Atrial Fibrillation Patient Charter was born in order to allow afib patients around the world to speak with a single voice, to influence the health policy agendas in our various countries, and to influence the media and to really raise awareness of atrial fibrillation.
The Charter was launched at the World Congress of Cardiology in Dubai in 2012. And through the Sign Against Stroke in Atrial Fibrillation Campaign, the Charter has garnered more than 700,000 signatures from around the world. That’s toward our goal of 1.7 million signatures, which signifies the number of people worldwide who are killed or disabled by afib-related strokes each year.
[00:42:00] If you would like to sign the charter, you can come to StopAfib.org and scroll down the right hand side and there’s basically an icon for Sign Against Stroke, and you put in your information there and you can sign the Charter from our website.
Empowering patients to be proactive in their care, and to empower their family members as well, is one of the goals of the Sign Against Stroke Campaign. For the past few months, I’ve been leading a global subcommittee that is focused on building patient empowerment tools to be used worldwide. They’re being finalized currently and will soon be available at SignAgainstStroke.com.
[00:43:00] There are five different downloadable PDFs. The first one is about understanding afib and treatment for it. The second is about understanding your stroke risks and lowering those stroke risks. The third is questions to ask your doctor — and I mentioned that earlier, that there are some really good questions to be thinking about when you’re there with your doctor. The fourth is advocating for your own care. The fifth is information for caregivers. What do family members need to know? Where can they find information?
We also developed two infographic posters, and eight short videos are almost done as well. In fact, they were just delivered to me over this weekend. I haven’t had a chance to even look at them. But all of that should be up at the SignAgainstStroke.com website soon. Those are really great tools to empower you to be proactive in your treatment and management of afib.
[00:44:00] As you can see, there are lots and lots of resources that can help you find your afib solution, and we’re here to help you with that. So when you leave here today, know that you can stop your afib. You can get in rhythm and stay in rhythm. You can get your life back.
I want to turn now to Q&A. I’m not a doctor, so I can’t give medical advice, but what I think would be valuable here is that many of you have great experiences to share as well. I have a few things that I want to make sure that I address, that came in on those pre-conference questionnaires, but if you have something to share with the community, feel free to come to the microphone and share that. Or if you have specific questions, things that you’d like for us to go get answers to, please let me know.
[00:45:00] While Mike is getting up, I actually was going to…I brought it. Oh you’ve got another one? Okay, why don’t you come to the microphone with that? So, Mike and I talked yesterday about, and he reminded me this morning, that when you ask for your doctor records, make sure to ask for all of the digital images on CD so that you have those and when you have to go from one doctor to another, that you have those available. Because, as Dr. Kowal mentioned yesterday, one of the biggest challenges is that it’s hard to get patient’s records. If you have physical copies and you have CDs that have your images, that’s extremely valuable. So that’s certainly something to remember. So let me go ahead and let you ask your question, Mike, and then I want to make sure I get some of these things in as well.
[00:46:00] Mike: This question would have been maybe better to address directly to the doctors, but I thought I’d ask you because you’ve had a lot of experience with friends that have had strokes, and there’s been lots of questions about the CHA2DS2 score here. When I went through the questions, my answer is zero.
Mike: But I’ve been in afib for six months. I was out six months. I’m in six months. I recently had an echocardiogram done and my left atrium showed a very minimal amount of enlargement. So would that mean that I am at risk of a stroke?
Mellanie: Basically, if your CHA2DS2-VASc score is zero and you have minimal risk factors, obviously, the data shows that you’re at extremely low risk of a stroke.
[00:47:00] So you probably don’t need anticoagulants or blood thinners, but it’s certainly a conversation to have with your doctor because there may be some medical history or family history.
Doctors tell me that family history is the most important thing they go by. If you have several family members who’ve died of a stroke, then that can change what you think about how you should be treated. That’s something that’s really important and relevant for your doctor to know. A lot really depends. If you’re a zero, you’re typically considered very, very low, but there may be some mitigating factors that you want to make sure that you have a conversation with the doctor about.
Mike: So, like, for example, my brother had a stroke and we don’t know why he had a stroke.
Mellanie: That’s a really, really important point. There is what’s called cryptogenic stroke, and obviously that’s what he had. Cryptogenic strokes are around 40 or so percent of all strokes from some of the data I’ve seen.
[00:48:00] There has been a lot of research lately in two things, and one of these actually alludes to one of the questions I was going to address. The challenge is to figure out if maybe those were afib-related strokes.
There have been several studies where patients who had cryptogenic strokes were sent home from the hospital wearing Holter monitors to track and see if they had afib. In many cases, they did. About 30% to 40% of those who had cryptogenic strokes had afib later on. So that’s really important for us to be aware of. That’s also a role for implantable devices.
[00:49:00] I was going to bring up, Medtronic is here as one of our sponsors, and they have what’s called the Reveal XT, which was first generation implantable monitor; and now they have the little Reveal LINQ, which is about the size of a matchstick, although some in the patient community affectionately call it our “pet chip”. It’s not quite that small — it’s not as small as a grain of rice but it’s about a matchstick size — and they can actually go in and implant that, and it will monitor you for three years.
You have this monitoring that can determine if you actually have afib. So for those who have cryptogenic stroke, there’s some discussion about should they be implanted with the Reveal LINQ so that it can be monitored. For those who are having other issues like PACs and other potential kinds of arrhythmias that can’t really be effectively captured, maybe there’s a role for those implantable devices in monitoring and helping to figure out what’s going on with patients.
[00:50:00] So you’re in afib, have been in and out of afib, but you have a family member who’s had a stroke. Since you don’t know the reason for it, that may be a mitigating circumstance that would cause you and your doctor to say, “You know, maybe we would rather be safe than sorry and have some anticoagulants.”
Or in some cases, and I was speaking with someone this morning — and it’s so bright it’s hard to see her — and she was mentioning that she’s very active and she doesn’t want to give up horseback riding and downhill skiing and stuff like that, and in her case, maybe there’s a conversation with the doctor about doing something like a Watchman or an AtriCure AtriClip, which is like a little hair barrette. I believe Dr. Damiano spoke about that yesterday. There’s also the Lariat, which Dr. Turakhia spoke about as well. Maybe in some cases there are reasons for considering some of these options as well. It’s certainly a conversation to have with your doctor.
Mike: Briefly, and as far as my story is concerned, like I said, I was six months without afib. And also, the first month of seeing my heart doctor, there was a month…like a year ago, I saw my heart doctor and he put me on some heart medication, and I was still in afib. And then I stopped taking the medicine and I was out of afib for six months, and so I was off the blood thinners. And then, when I went to see my regular doctor, he found out that I was in afib, so he did not want to let me leave the doctor’s office and they sent me in an ambulance to the hospital.
When I went to the hospital, they gave me nothing for my blood thinner because the doctor was scared I was going to have a stroke. And then when my heart doctor found out that I was not on the blood thinner, I was blacklisted and the hospital will not treat me with an ablation.
Mellanie: Interesting. Let me ask you one question Mike, were you seeing a cardiologist or a cardiac electrophysiologist?
Mike: An electrophysiologist.
Mellanie: It was an electrophysiologist, okay.
Mike: My thinking is, he got the fear that if he did an ablation, that I would not take the medication. Part of the ambiguity of the whole thing is that he stopped accepting my insurance, so I did not go back and tell him I stopped taking the medication, because he stopped taking it. And then later, I got the insurance and I went back to him and he didn’t want me.
Mellanie: If there are other electrophysiologists in your area, you may want to start with a new one because it sounds like that’s a challenge.
Mike: I did. I went to Memorial Hospital and we scheduled an ablation there. We couldn’t do it right away because I had to go to Washington, D.C., and so there was a two-week delay. And I was thinking it through, and through a long process I thought about coming here, postponing it. When I postponed it, that doctor got with my previous doctor and now both hospitals blacklisted me.
Mellanie: Oh, my. I’m sorry about that. Hopefully, there have been some sessions these two days that have been helpful in potentially looking at some other options, and hopefully you’ll be able to find someone that can help with that situation. I got the five minute sign. Debbe is here, so let me turn it over to her then.
Debbe: Real quick question. I get this an awful lot on the forums. The EP or cardiologist prescribes an oral anticoagulant but the primary care says, “I need you to stay on 81 milligrams of aspirin.” Are these two supposed to be together?
Mellanie: Yeah. That is definitely a challenge. Typically, an electrophysiologist is someone who should be watching over the heart rhythm. Many people with afib are being treated by their primary care physician and not by a specialist, so they may not even be on anticoagulants. Typically, the specialist probably should be dictating what’s most appropriate, rather than the general practitioner. I would certainly, as a patient, want to defer to the specialists to identify what is right, unless there are some unusual circumstances under which the patient really should be having aspirin. But anticoagulants and aspirin don’t necessarily play well together.
[00:55:00] There’s been a lot of research lately on that. It used to be, thoughts about dual therapy and triple therapy and so forth, but a lot of that’s being rethought, particularly in the afib guidelines. It’s really better to let a specialist be dictating that because a specialist is more likely to be reading those afib guidelines and reading the research and the literature and to know what’s the latest.
General practitioners and family physicians have so many areas they have to cover that they cannot read it all. It’s physically impossible. It’s hard enough for the specialists to cover their entire specialty. Typically, the specialist is probably the better choice to listen to on that but the patient then gets caught in the middle. Many times patients are…my friend Judy told me that she was working with a cardiologist and an electrophysiologist, and one of them said to her, I don’t know which, “You have to decide between him and me, and come back when you’ve decided.”
[00:56:00] That should never happen. If you’re having those kinds of territorial conflicts between your doctors, then it’s time to find a way to get your doctors to play better together. Thank you, Debbe.
I think we’re right at our time. I want to respect your time, so let me see. I think we have a couple of quick things. I appreciate you — I appreciate the questions, the comments, the input. I hope that you learned a whole lot these two days. I hope it’s been worthwhile for you. Thank you. Thank you. Several of you are back from last time and you were the first ones to register when we announced it, so I hope next time you guys will all feel that way and will all want to come back.
[00:57:00] The red forms that have been on your tables, is there anybody that’s missing one of those red evaluation forms? If you are, please hold your hand up. Julia, if you would be willing to make sure that everyone has one, I’d appreciate it. Thank you.
On those evaluation forms, this information is really extremely important to us. We want to know what things you’re taking away, what was really valuable actionable information for you. We’d like to know what you learned, what you’re going to do with it, and with your permission, if we can contact you in three months to determine what you did and the results from it.
[00:58:00] The reason that we do that is because our sponsors want to make sure that when they sponsor events like this, that real behavior change is being driven. What we need to know for them is, what things did you learn and what did you do with it and what have the results been? That’s what they really want to know. They want to know that you’ve been empowered to take action and do something about your afib, maybe just even small things that you might have learned that you’re taking away. Because we want to make sure that they want to support this kind of thing going forward because we believe it’s extremely valuable for you and for the afib community. We want to make sure that they are seeing the value of this.
We ask you on the evaluation things like: are you a patient caregiver or other? If you’re a patient, how long have you had afib, and the type of afib? Is it paroxysmal, is it intermittent, or is it persistent continuous?
[00:59:00] Before today, what was your level of knowledge about all of these areas and what is your level of knowledge in leaving the conference today? That’s on a scale of one to 10, with one being none and 10 being thorough, complete knowledge about managing afib.
We also want any kind of comments that you might have about food, venue, things that you’d like to see more of, things you’d like to see less of. What are the things? What are your comments so that we know how to make next year’s conference the best conference it can possibly be.
Finally, if you’re not receiving the StopAfib email newsletter and you would like to, you can check the box and give us your email address so we can send it to you. I encourage you to sign up because that’s how we communicate, not only the new things happening in afib but also when the videos are ready so that you can go watch them. Please check out the StopAfib.org resources that I shared with you, and especially come join our forum.
[01:00:00] We want to recognize our sponsors for making this weekend possible. They were the ones that made possible the great food, the wonderful speakers, the videos so that you can watch this again to catch anything you might have missed and to share with family and friends. Our sponsors that made this possible…
Our gold sponsors are Daiichi Sankyo, which makes Savaysa, the new anticoagulant; and Bristol-Myers Squibb partnership, and that is the group that is responsible for Eliquis, also an anticoagulant.
Our silver sponsors are Boehringer Ingelheim, which is the maker of Pradaxa, and that also is a new anticoagulant; Janssen, which is the maker of Xarelto, which is another new anticoagulant; and then we also have Sanofi, the company that makes Multaq, which is an antiarrhythmic medication —in other words, it helps to manage your rhythm of your heart.
[01:01:00] Our bronze sponsors are: AtriCure, which made the device that was used in my surgery and has given me my life back; Boston Scientific, which is the company that has the newly approved Watchman device for managing your stroke prevention with afib; Medtronic, which I mentioned their Reveal LINQ implantable monitor, and they also do pacemakers and they also do the cryoballoon ablation that Dr. Kowal spoke about yesterday; and then Topera, which is now part of Abbott — Topera is the company that provides the devices that are used in the FIRM ablation that Dr. Narayan spoke about yesterday.
[01:02:00] Our patron sponsor is AliveCor, which gave out the ECG heart monitors.
Our supporter is AfibAlert, which is Lohman Technologies, and they have a standalone device that does not require a smartphone and has lots of intelligence in it.
Our cosponsors: the American College of Cardiology’s Cardio Smart, which is a heart patient site that you may want to go check out; the Heart Rhythm Society, which is the society of cardiac electrophysiologists; and another cosponsor was MyAFibExperience.org.
[01:03:00] Our official mineral water sponsor — whose logo is not on there, but there’s information in your program book — is Gerolsteiner.
Would you please give our sponsors a round of applause for providing this event? Thank you.
Some of the sponsor tables may still be set and you can go by and visit with them. They should be here until about noon. If you haven’t gotten your AliveCor device, please make sure and stop by. I think they had a few extras for those who didn’t sign up in advance but who do have afib. AfibAlert also had their special coupon for $100 off their device.
There’s still time to do…I believe that the videographer may still be here and there may still be the possibility of doing a video testimonial. If you’ve gotten together with folks in your various discussion forums and other social media groups, if you want to do a photograph, Jim’s back in the back and he can do group photos for you.
[01:04:00] I want to close by thanking you all for coming. I’m hoping to see you at our next event and hoping to see you on our forum, the StopAfib.org forum, in the near future. I hope that this weekend helped you to get in rhythm and will help you to stay in rhythm. Thank you all.