2013 Atrial Fibrillation Conference: Living with Afib: Mellanie True Hills, StopAfib.org

2013 Atrial Fibrillation Conference: Living with Afib: Mellanie True Hills, StopAfib.org


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.

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