Living with Afib and Communicating with Your Doctor — Video of Mellanie True Hills, Founder of StopAfib.org
December 16, 2013
In this video from the Get in Rhythm. Stay in Rhythm.™ Atrial Fibrillation Patient Conference, StopAfib.org Founder Mellanie True Hills talked about living with afib.
This video deals with such topics as:
- Communicating with your doctors
- What caregivers should know
- Frequently overlooked relationships with afib, such as sleep apnea and autoimmune diseases including celiac disease/gluten intolerance, psoriasis, and rheumatoid arthritis
- Common issues such as alcohol, caffeine, dehydration, air pollution and chemicals, stress, exercise, and diet and supplements
- Specific articles of value to afib patients and caregivers
Video watching time is approximately 33 minutes.
Articles referenced in the video can be found at:
- Gender Matters: Why Afib is More Fatal For Women
- A Matter of Trust: How to Build Adherence with Afib Patients
- Bridging the Afib Communications Gap
For US sources of Gerolsteiner Mineral Water (mentioned in the video), please call the US distributor at 800-777-0633 or email them at [email protected]
Knowing how important this information would be to those living with atrial fibrillation, we committed to do a two-camera video shoot of the entire conference—a very expensive undertaking—in hopes that you, the afib community, will be willing to help us defray those costs through a donation (instead of us charging you for these videos, which many of you said you were willing to pay for). You can make a secure tax-deductible donation here, or click on the red Donate Now button.
Mellanie: I’ll talk about communicating with your doctors, and also about living with afib
[0:10] Let me give you a little bit of background first. Now, I already mentioned that I was a patient. I had a surgical procedure, and I’m now free of afib. I founded StopAfib.org in 2007, and in that same year, we launched afib month in September to raise awareness of afib. We worked with other organizations, such as the Heart Rhythm Society, American Heart Association, and the American College of Cardiology to work with Congress to make Atrial Fibrillation Awareness Month official. So, it’s now a national awareness month. In raising awareness, I’ve even had the privilege of following Barry Manilow at the podium in front of members of Congress. But as an atrial fibrillation patient, I was scared, lost, nervous, and unsure. I realized just how vulnerable we patients are when we’re sitting with a doctor who may be standing over us, at the very least maybe in a white coat, who’s speaking in a language that we don’t understand, about a condition that is complex, and confusing, and has turned our lives upside down.
What I’m going to share with you is for you if afib has made your life more difficult, or if it has taken over your life. [1:52] One of the biggest challenges that we face in communicating with doctors, especially when our appointments are short and there’s so much to cover, is that afib is such a complex disease that we may not get all of our questions answered. We may just not even know where to start. So, let me give you some ideas for what you can do to make your doctor visits most effective.
[2:19] First, prepare for your doctor visits like you might do for a business meeting. Write down your questions, and write down your goals for your doctor visit, just like you would for a business meeting. Your doctor appreciates you coming prepared. My doctors usually start out by saying, “What questions do you have today?” That’s a good way to get your concerns addressed before going on with the other things that need to be addressed during the visit. With visits being short, the more effective you can make that visit, the much better results you’ll get from your visit.
[3:06] In addition, one patient said, “We’re not stupid. We’re smart people who just don’t happen to speak the same language as our doctors.” So, if you don’t understand what your doctor is telling you, tell your doctor. Let them know that you need more information, you need explanations. Maybe they’re using medical jargon that’s just not familiar to you. Feel free to tell your doctor that you don’t understand. If you sit there, and you’re nodding your head, your doctor thinks you understand, and is just going to keep on going. So, help your doctor help you.
[3:40] In addition, it’s extremely valuable if you can bring an advocate with you to your appointments. Maybe a spouse, a child, a family member, a friend—someone that can write down the things that the doctor is telling you and also remind you if you forget some of your questions. And having a second person hearing what you’re saying, and hearing what the doctor is saying, is really valuable because you might be taking away a slightly different perspective, and you have someone to bounce it off of, and make sure that you really understand.
[4:17] When we’re in our appointments, there is so much to know about afib. It’s such a confusing condition, and you know, we’re rushed because appointments are short. So, make sure that you’re getting your questions answered, and make sure that you have someone there with you. That’s really the best. As Dr. Prystowsky said, sometimes he’ll send people away and say, “Bring your spouse with you,” and that really is important because it impacts the spouse as well. We’ll talk about caregivers in a moment. But those who are living with afib include not only the patient but also the family members.
[4:58] In addition, tell your doctor openly and completely about what afib is doing to you. In many cases, you’re reluctant to totally express what it’s doing; and if your doctor does not know, then your doctor cannot treat you for those issues. As Dr. Prystowsky was talking about earlier, you may have just gotten so used to afib that you really don’t notice the differences. But, if you stop and think back to “here’s what I used to be able to do before I had afib, and I can’t do that anymore”, express those kinds of things to your doctor so that you can get something done.
[5:40] Basically, as Dr. Kowal said, it’s good up to a point. Don’t bring so much stuff in with you that you overwhelm your doctor. It’s great if you found data you want to discuss with your doctor, but don’t bring so much data, or charts, or a big stack of printouts from the Internet, because there’s not time to deal with that in a single short appointment. That can overwhelm your doctor because your doctor doesn’t really have time to process it all. When a doctor walks in and sees someone with a huge stack of printouts from the Internet, what do you think they want to do? They want to turn and run. Choose the most effective things that you want to talk about and don’t bring too much.
And then it’s perfectly okay to ask your doctor, “Are there some resources I should be checking out? What should I be looking for when I’m doing my research?” Your doctor wants you to be educated and informed. It makes his or her job easier, as well as yours. So, feel free to ask your doctor, “Are there some specific resources that you recommend?” And if you’ve found things you want to tell your doctor about, that’s great, too—just make sure they are credible resources.
What are some of the resources that doctors can share with patients, or that you can share with your doctor? [7:06] Well, first of all, StopAfib.org is one of those resources. And we provide patient cards that we give to the doctors to give their patients to tell them about our resource. There were some of those out on the registration table, and feel free to take one if you didn’t get one earlier. You’ll notice that there is a red puzzle-like thing in the lower left of the back of the patient card. That’s called a QR code, or a quick response code. That is something you can scan with a scanner on your smartphone, or your iPad, and it will actually take you to our mobile website so you can use it on the go.
[7:49] StopAfib.org is an online resource that is for patients, for families, for caregivers, to help you become more proactive partners with your doctors in your care. We have a search feature up in the upper left. We have a sign up for our newsletter in the upper right and center, and that newsletter can actually alert you to new things that are going on at our site. Maybe there’s some new research that we just published—we’ll send you an email newsletter to let you know about it. Maybe there’s a video interview that we did at one of the medical conferences, such as when I have done video interviews with Dr. Prystowsky. We send out an alert in the email newsletter. So, we invite you to sign up for our newsletter.
In addition, you can access an afib services locator that tells you doctors in your area that treat afib. There’s a blog and discussion forum, which I’ll talk about in a minute, but let me call your attention to something that is really important. [8:53] You see that red, white and blue symbol in the lower right? It’s the HON code seal, H-O-N, for Health On the Net Foundation. That is an agency in Switzerland that certifies, and basically audits and declares credible and trustworthy, various medical and health websites. We encourage you to look for that HON code seal on websites that you’re looking at to determine if they’re credible and trustworthy. You can even click on it on a website, and it’ll take you to that certifying agency and will tell you the last time that that organization went through an audit. It will also tell you how they address the eight guiding principles of credible, trustworthy health and medical websites.
We’re quite proud of the fact that we’re currently the number one arrhythmia site, and in the top five heart disease sites on the Internet, along with the American Heart Association, British Heart Foundation, National Heart Foundation of Australia, and the American College of Cardiology.
[10:15] If you’re new to afib, newly diagnosed, or if you’re a caregiver that’s not familiar with afib, you may want to go check out our Get Started Learning About Afib guide. It’s on the StopAfib website, there’s actually a button on the right hand side that will take you directly there, and it will help you learn about Afib and treatments.
[10:40] And then, one of the things of which I’m proudest, is our Afib News and Videos page. This is where you can locate the latest afib news and video interviews from medical conferences with top afib experts. There’s input from our Global Medical Advisory Board, and some of the members of our Global Medical Advisory Board include Dr. Prystowsky and Dr. Kowal.
In addition, we share some of the things that we’re in involved in. I don’t know if any of you have participated in our Cleveland Clinic Chats. We’ve partnered with the Cleveland Clinic to have live chats twice a year with their afib experts, and we have one coming up on December 17th. So, if you haven’t participated with us in the past, feel free to come to our website soon, and we should get it up in the next few days. Or if you signed up for the newsletter, you’ll be alerted to it as well. That’s coming up soon. We also talk about the things that we’re doing at that website—basically, things like testifying before the FDA, or think tanks that we’re participating in, or various coalitions. So, a lot of great information is on this website.
[11:55] Then, here’s our Patient and Caregiver Resources page. This is where you can find a comprehensive collection of links related to afib. Anything from professional societies—the medical societies—to guidelines for treatment and management of afib, to discussion forums, to patient blogs, to all kinds of resources related to afib. [12:26] In addition, there’s a glossary, and that is to help you interpret words that your doctor may use that you’re not fully conversant in, and to help you learn some of the language that they may use so you may communicate better with them.
[12:40] There’s also a blog, the Atrial Fibrillation Blog. That’s short for web log. Our Atrial Fibrillation Blog is where we post opinions and start discussions, and this one is my favorite posts. This is Can Avoiding Dehydration Prevent Atrial Fibrillation Holiday Heart Syndrome? This is posted also at USAToday.com, and you’ll see in that image, that photo, a picture of Gerolsteiner water, which is the same water that’s on your tables. Gerolsteiner, and the U.S. distributor, conSup, are our official mineral water providers for our meeting today. That’s a little unusual, but I’ll talk about Gerolsteiner and put some context around it in a minute.
[13:34] We also have our Discussion Forums. This is where you can share information with others and get emotional support because the people on this forum understand what you’re going through. They can provide their perspective, share some ideas, and hopefully help you make your afib journey much easier. We’re there to help support you through your journey. There’s a general forum, and there are also special interest forums, like ‘afib and sleep apnea,’ etc.
[14:06] There’s so much information out there in the way of resources and support on social media. Here are our social media sites: Facebook, Twitter, YouTube, and there are many, many others out there. There are a number of you here from the Atrial Fibrillation Support Forum on Facebook — there are a lot of great resources out there as well. There’s much in the way of resources that can help you manage your afib, to live with your afib.
[14:36] One of the things that I think is a challenge is helping caregivers really understand what it’s like to live with afib. It can be awful for those of us who have it, and it’s hard for those around us to really understand. In fact, research in the Journal Cardiovascular of Nursing found that because afib is not considered immediately life-threatening, friends, family, and coworkers, really don’t appreciate what it does to us, and they may minimize the condition and even dismiss our concerns and symptoms all together.
Afib may not be immediately life-threatening, but it does put you at a greater risk of stroke—five times greater risk than those who don’t have afib, and afib is not benign. Many people seem to believe it’s benign, but it’s not. We know that physically and mentally afib wears you down. We know that the constant watching-over-your-shoulder-waiting-for-the-afib-beast-to-strike creates a lot of anxiety and makes it difficult to go about your day-to-day activities. So, afib really can take over your life and destroy it. You’re constantly on edge knowing that at any moment you could have to cancel out of what you had planned to do. We also know that the quality of life of those who have afib is worse than the quality of life of those who have had a heart attack because they’ve had it, and they’re getting on with their lives, and we’re constantly looking for the next afib episode. It’s important that you share with your caregivers what afib does to you so that they can understand, and [16:40] to help them understand, there are some resources. The first thing I want to point you to is a webinar that can help your caregiver understand what they can do to help you, what their role is as part of the afib care team. This was produced by TeamAFib, and it’s at the TeamAFib.com. TeamAFib is a coalition of patient organizations that are helping those with afib. StopAfib.org is a member of that group, and we hosted the webinar. It was underwritten by Boehringer Ingelheim, which is one of our sponsors here with us today.
In addition, Boehringer Ingelheim helped TeamAFib develop the AFib InSight Program, and that is a three-dimensional view of what’s happening in the body when afib creates a clot that then goes to the brain as a stroke. We’re very fortunate that Boehringer Ingelheim brought the AFib InSight here. During the break, you can go out and actually use the goggles or the iPads to look at this program and better understand your stroke risk with afib.
In addition, the movie version of it is at TeamAFib.com so you can share it with family members and caregivers as well.
And also, Boehringer Ingelheim has brought for everyone, and they should be on your table, a [Discovery Channel] DVD called A Heartbeat Away From Stroke. This is a fabulous, fabulous resource. It’s an afib documentary on stroke prevention and afib. It was underwritten by Boehringer Ingelheim, and StopAfib.org collaborated in the production of this. And we actually are fortunate that we have one of the stars of it with us today. Toni Miller is here. Toni, I can’t see you with all the lights, but can you raise your hand, if I haven’t embarrassed you. There she is back there. She is the star. It starts with her. So, please take this, and share it with family and friends.
[18:45] Let’s move on to talk about some of the things that are frequently overlooked related to afib, and there are a couple of relationships: one is sleep apnea, and the other is autoimmune disease, such as celiac disease, or gluten intolerance, which is related to flour and wheat in your diet. Then there’s psoriasis, which is basically itching, and then there’s rheumatoid arthritis.
[19:11] First of all, sleep apnea. We know that sleep apnea is very often overlooked. Your doctors may not think to ask you about it, so make sure if you think you might have it to mention it to your doctor. We know that the odds of an irregular heartbeat are 18 times higher after a sleep apnea episode. So, there is a strong correlation, and up to half of those who have afib also have sleep apnea. So, if your afib starts in the middle of the night, could that be sleep apnea? Might be. Could treating sleep apnea stop your afib? Probably not, but it might lessen the amount of afib that you have. It’s definitely worth talking with your doctor about. Also, it’s important to know if you have sleep apnea if you’re getting ready to have a procedure because we know that one of the main reasons that cardioversions will fail is untreated sleep apnea. We’re also seeing research showing that catheter ablation and surgical procedures can also fail as a result of untreated sleep apnea.
It’s also a myth that the only people that have sleep apnea are overweight men with thick necks. We know that slim people and women can also have sleep apnea. In fact, there’s some research that just recently came out of Sweden that found that about 70% of women 65 and over had some sleep apnea, and about a fourth of those had severe sleep apnea that could actually be what triggered their afib. If you want to know more about sleep apnea go to StopAfib.org, and put sleep apnea in the search box in the upper left of our screen.
[21:15] The relationship of afib and autoimmune diseases is actually fairly new. This is something that we’re just starting to see. In fact, there was research that just came out last week that said with rheumatoid arthritis, basically, atrial fibrillation is approximately 40% higher in rheumatoid arthritis patients than in the general population and leads to increased strokes, as well. That’s starting to add some of the knowledge base about this connection between afib and rheumatoid arthritis.
[21:56] In addition, atrial fibrillation risk is higher among those who have psoriasis, and their stroke risk is higher, too. And one of the newest and unproven relationships is with celiac disease and gluten intolerance. There’s been some research about it, but we’re still in the very early stages of that. I’m working with some well-known researchers in New York City—one of them just happens to be an afib patient, and he is studying the impact of afib and autoimmune diseases, and he happens to be the protégé of a Nobel Prize winner. He has done amazing research, and he’s starting to postulate that afib might be an autoimmune disease. He had a recent editorial in the Heart Rhythm Journal about that potential connection, and so he’s doing a lot of research into it. So, standby—there may be information coming in the not too distant future.
[22:58] Let’s talk about some common issues related to afib. One is the whole area of alcohol and caffeine. We often hear that alcohol and caffeine trigger afib. Who here is triggered by alcohol or caffeine? Anybody? Good. A few of you. It’s actually quite rare. We hear that a lot, but interestingly there’s a lot of research starting to come out about the value of coffee—the antioxidants from it—and that’s its actually good for you. We also know there are antioxidants in red wine—the resveratrol—so it could possibly be good for us as well. With this recent research, what is it about alcohol and caffeine that could be a relationship to afib? Well, there’s some belief that it could be dehydration as a trigger because we know that alcohol and caffeinated beverages can by dehydrating. I’m a big fan of Gerolsteiner water, if you haven’t already noticed that. It is a German mineral water that keeps you hydrated, and also contains magnesium and potassium, which are things we know can be out of balance with those who have afib. I’m such a strong believer in it that I reached out to them and asked them if they could be our official mineral water sponsor. So, what’s that about?
Well first off, I first discovered it a couple decades ago, and I had been using it as my jet lag cure. I had to make three trips to Europe in June, 32,000 miles—now, I don’t travel quite as much as Dr. Prystowsky, but I did 32,000 miles in June—and I had no jet lag. That’s because I had Gerolsteiner water—my host made sure I had it—and as a result, there was no jet lag. What I’ve noticed is that if my heart is irritable or jumpy from stress or travel, and I have some Gerolsteiner water, my heart just calms right down. I’ve even converted out of afib with Gerolsteiner water. We want you to make sure you have some of it here, and also invite you to take home some bottles. We have them on the water tables so you can take some home with you for your next afib emergency. Please let me know if it works to convert you as well, because I’d like to have a bigger sample than just one. So, please let me know what your experience is with it.
Another thing that we have found that many members of the afib community have contributed—none of this is really evidence-based, this is just information that’s anecdotal, that’s been shared in the afib patient community—patients have found that they can drink organic coffee, just not non-organic coffee. That might be something to be aware of as well. It doesn’t matter whether its full caffeine or decaf, and the speculation is that maybe it’s pesticides in the coffee, rather than the caffeine, that’s the culprit there.
[26:24] In addition, it could also be related to dehydration, or it could be just plain old stress. We know a lot of people have an issue when it comes to stress, and about a half of the patient community reports that stress can actually trigger their afib. We have some stress management things on our blog, so just go to our atrial fibrillation blog and type in “stress management” and you should find some resources there to help with that.
Another area of common concern is the whole area of exercise. Exercise is good for you overall, but we know over exercising can be a problem. Some people find that they go into afib as a result of exercise, others find they can convert from it as a result of exercise. It’s just something to be aware of. When we come to the Q&A session this afternoon, we may delve into some of the afib and athletes research.
[27:31] Finally, there are various beliefs about diet. Some people in the afib community avoid sugar, and that’s probably good because we’re starting to learn that sugar actually can be worse for you than fats. We also have concerns about flour or grain because of the potential connection with celiac disease, or gluten intolerance. A lot of afib patients avoid flour and grain. These are just some things to consider along your afib journey and to potentially try and see if they have an impact on you.
[28:07] Related to diet is one other thing, and that’s the area of vitamins and supplements. We often hear from patients about, “Why won’t my doctor prescribe supplements for me? Why can’t my doctor tell me anything about supplements?” To address that here, there is not a whole lot of evidence base, and your doctor wants evidence that something works before suggesting it for you. There’s not a lot of evidence base. Fortunately, there’s is research that is starting to be done by some of the med schools and academic centers, so hopefully, over time, we’ll get some input there.
[28:50] A couple of things that are related to afib that we do know, fish oil and omega-3’s, had been stated as a possible way to head off arrhythmias, or afib. The verdict is still out on that. Some research says yes, some says no, so we really don’t know at this point. Another area is magnesium and potassium. A lot of folks in the afib community have said that magnesium glycinate works really, really well, balanced with potassium. If you’re wanting to experiment with something, you may want to see if magnesium and potassium has an impact on you.
[29:32] Just a few last things, and then we’ll head to break. I want to encourage you to check out some articles. First is my patient perspective article that was for EP Lab Digest, and it’s about women’s greater stroke risk. We put a copy of it in your program book. There are a couple other articles that may be of value. [29:55] These are on communication. One of them is A Matter of Trust; the other is Bridging the Afib Communications Gap. For that, you can just go to our website, put these titles in the search box, and it will actually bring you access to those.
[30:10] Today, we’re focused on the problem of afib disrupting your life, and we’re helping you to identify some potential solutions, but the problem you may still have leave here today is knowing which solutions are right for you. We have a way to help you with that, as well. We hope that you’ll join us on the StopAfib.org discussion forums so that you can discuss that with others to find out what their experiences have been, and we hope you’ll have the conversation as a result of what you’ve learned today with your doctor about what options you might have and what your treatment path might be.
Also, please sign up for our email newsletter so we can let you know all the new things that are coming along. When you leave here today, we hope that you will have some ways to help you to stop your Afib so that you can Get in Rhythm and Stay in Rhythm.
With that, let me move on, and we’ll go ahead and take our break.