Living with Atrial Fibrillation with Mellanie True Hills

Show Notes

Atrial fibrillation (AFib) is the most common type of arrhythmia, or irregular heart rhythm, and impacts as many as six million Americans. While the irregular heart rhythm itself isn’t generally serious, the abnormal blood flow and strain to the heart can lead to serious and deadly medical conditions, including heart failure and stroke.

In this episode, we are joined by Mellanie True Hills, the CEO and founder of StopAfib.org, a patient-to-patient website and resource that helps all AFib patients make informed decisions regarding their life and health. Mellanie is an AFib survivor herself and created StopAfib.org so that others will have the resources, answers, and support they need when they are facing a diagnosis. Mellanie shares her perspective on living with AFib, common questions asked by the people who turn to StopAFib.org for information, why AFib patients need to take stroke risk seriously, and more.

Episode Transcript

Lindsay Clarke:

Hi everyone. Welcome to This Is Growing Old, the podcast all about the common human experience of aging. My name is Lindsay Clarke and I’m the Senior Vice President of Health Education Advocacy at the Alliance for Aging Research.

Lindsay Clarke:

Earlier this month, the Alliance released two new educational films on living with atrial fibrillation. Atrial fibrillation, or AFib, is one of the most common types of irregular heart rhythm or arrhythm. It can be physically exhausting, scary, and disabling and raises the risk of heart failure, dementia, and stroke. You can learn more about AFib and find these new films on our website at www.agingresearch.org/AFib as well as at our campaign website yearwithoutastroke.org.

Lindsay Clarke:

Joining us today to talk more about AFib is Mellanie True Hills, the CEO and founder of stopAFib.org, a patient to patient website and resource that helps all AFib patients make informed decisions regarding their life and health. Mellanie is an AFib survivor herself and created stopAFib.org so that others would have the resources, answers, and support they need when they are facing the diagnosis.

Lindsay Clarke:

Mellanie is not only a heart disease survivor, but she’s a fierce advocate, an award-winning author, and an inspirational speaker. Before beginning her career in AFib advocacy, Mellanie was an internet pioneer and led the creation of internet and intranet strategies at JCPenney and Dow. At Cisco, she consulted with Cisco’s global 500 customers on their internet and intranet strategies. It’s really great to have you here, Mellanie, welcome.

Mellanie True Hills:

Thank you so much, Lindsay. It’s such a joy to visit with you today.

Lindsay Clarke:

Oh, likewise and we’re so glad to hear from you and hear more about your work, so let’s get started. As I mentioned in the introduction, you were inspired to start stopAFib.org after your own experience with AFib. Would you start by telling our listeners a little bit about your journey?

Mellanie True Hills:

Absolutely. And, and let me sh-, go ahead and share a little bit about what AFib is like to provide some context. So I often tell people to think about what it’s like when you’re running, and your heart is pumping and beating out of your chest, and it’s hard to catch your breath. But once you stop running, everything returns to normal. What if it didn’t? What if it was like that 24 hours a day and you felt like you were running a marathon 24 hours a day while you tried to work, and sleep, and, you know, just spend time with your family?

Mellanie True Hills:

Well that’s what AFib is like and it can take an emotional toll, and a physical toll, and financial toll on you as well. Um, it’s physically exhausting, it’s emotionally draining as you’re constantly looking over your shoulder waiting for the AFib beast to come back, and worried that you might have a stroke, and wondering what your family will think when you have to cancel out of something you promised them yet again. And constantly concerned and sometimes even anxious or depressed because A-, um, AFib has hijacked your life.

Mellanie True Hills:

Then it’s also financially devastating. We’re the frequent fliers of the emergency departments with huge medical bills and co-pays and some people lose their jobs, their cars, their houses, and some even their families from AFib. But we’re too embarrassed to talk about it.

Mellanie True Hills:

Well, I lived with AFib for 22 months with the uncertainty, and the challenges that come with living with AFib, and the exhaustion as well. After 22 months, I had a surgery, a minimally invasive surgical ablation procedure sometimes called a mini maze and from that I became AFib free.

Lindsay Clarke:

Mellanie, that’s really such an important, um, story because it really shares a perspective. I don’t think a lot of people understand what it’s like to live with AFib and so thank you for sharing that with us. And I know a big part of the work that you do is sharing your story and you do that through stopAFib.org. But will you tell me more about that work you’re doing and, and why you started the organization?

Mellanie True Hills:

Well, thank you for asking because I think it’s really important to understand how it came about. Uh, once I was AFib free, I could’ve just gone on with my life and not worried about anybody else having it, but I couldn’t do that. I’m s-, kept saying, “Somebody needs to do something.” And I decided, “Well it might as well be me.” I knew I couldn’t stand on the sidelines and watch other people suffer like I had knowing that there were solutions out there, there were answers out there and I could be instrumental in helping people find their answers. And so that’s why I started stopAFib.org. I’ve been fortunate that I’ve been AFib free for more than 16 years and have had the privilege of being able to help many other people become AFib free too.

Lindsay Clarke:

That’s a really important point of the quest-, being there to answer the questions of people-

Mellanie True Hills:

Mm-hmm.

Lindsay Clarke:

… who are facing their diagnosis. And I know you do that through your website, through a ton of great content, and through your Get in Rhythm, Stay in Rhythm Conference. And I’m curious what are some of the common questions that you get from people who are coming to your website and attending your conference?

Mellanie True Hills:

So absolutely. When, when people first are diagnosed with AFib, a lot of ’em are freaked out, you know, they don’t know what this thing is and what effect it’s going to have on their lives. Um, they wanna know, “What did I do to cause it and what can and can’t I do as a result of having it?” And so the first thing that we help them with is to better understand their AFib and that they may not have done anything to cause it.

Mellanie True Hills:

For some people, it runs in families, it’s genetic. And for others, there may be something there that’s been in their heart since birth. Um, uh, many people have it due to congenital heart issues. And then for others there may be other things that are in the environment that they really can’t control that may be causing it. So we help them to start trying to understand what their AFib is about, what might be some things that they can do something about, and what they, what they can’t, and what kinds of changes it might make in their lives.

Mellanie True Hills:

So what we do is help them get control and to feel like they’re in control of their AFib and then, um, we go on from there. Many of them start saying, “Well I, you know, I, I know that, um, stroke is a risk from AFib and I don’t wanna have a stroke, but I don’t want to take a medi-, a medication, an oral anticoagulant, also called a blood thinner to prevent a stroke. I wanna find something that’s natural.”

Mellanie True Hills:

That is one of my most and st-, one of my biggest concerns when people start asking, you know, “What can I do? Um, can I take natural products instead of having to take medications?” And that’s really scary because there are no natural products that have actually been proven effective at preventing AFib related strokes. And so we try to help people understand the issues around preventing strokes and what it takes to actually do so. So those are some of the things that we encounter when people are first diagnosed.

Mellanie True Hills:

And when they come to our conference, we’re going way beyond just that. We’re helping them to understand what are the, um, things that they can manage through lifestyle? What are the things that require medications? And if medications don’t work, what are the procedures that they can have to help them get control of their AFib and maybe even move on and solve their problem with AFib?

Lindsay Clarke:

Thank you for that. And you mentioned stroke, um, a bit in your answer and then earlier you talked about with your experience worrying about stroke. And I realized that it’s only one piece of, um, the treatment for AFib, but it’s a particularly serious potential complication of, of AFib. And I was wondering if you could talk to our listeners a bit about how stroke, um, how the, the risk of stroke is raised with AFib and why, and a little bit more about what people should be doing to reduce their risks?

Mellanie True Hills:

Yeah, absolutely. So first, the reason that stroke is a problem for those with AFib is that AFib is a condition where the heart is not pumping properly. It’s not pumping the, the blood on through, uh, to the body and to the brain, and it’s, it’s not, um, functioning properly. The heart’s probably just sitting there quivering.

Mellanie True Hills:

And what that means is that it’s not clearing that blood out and so it’s kind of like when you see a pond that’s stagnant and you see this pond scum or algae around the, the edge or maybe even all over the pond. That’s kind of what it’s like with AFib. You have the, this coagulation or clotting taking place in the heart and then at some point, that clot can be launched out of the heart and go to the brain as a stroke and that’s why this is such a, you know, a problematic situation.

Mellanie True Hills:

So there are medications that can help people not have those clots building up. They actually prevent the clotting, um, that by interrupting the clotting process, and so that’s a really important thing that can happen. Or there’re also devices that can be put inside of the heart to catch those clots so they don’t actually get launched to the brain. So there are a lot of options of things that can be done to help prevent strokes.

Mellanie True Hills:

But we also know that stroke is not the only issue with AFib. We’ve learned in recent years that heart failure can be an even bigger problem with AFib than even strokes. We also know that dementia and, potentially, Alzheimer’s disease are also problems that can happen from AFib.

Lindsay Clarke:

I’m really glad that you brought that up because we, you know, we obviously have had a lot of emphasis on stroke prevention. And you and I have worked together a lot over the years, um, both on the review of these films and then on our celebrating A Year Without A Stroke-

Mellanie True Hills:

Yes.

Lindsay Clarke:

… Campaign that really looked at making sure that we are, um, doing what we can to prevent strokes in older adults. But really important point that that’s not the only, um, potential complication and so it’s really important that people are, are properly managing their AFib and reaching out to organizations like yours to learn how to do that.

Mellanie True Hills:

Right, yes.

Lindsay Clarke:

Well one thing that you said a couple of times is that you’re now AFib free. Uh, what does that mean and how many people diagnosed with AFib can expect to one day be AFib free?

Mellanie True Hills:

Well first of all, I am AFib free meaning that I don’t have AFib episodes anymore. I used to go, you know, into AFib and be in it for, you know, a few minutes to a few hours. And now I don’t have that happening anymore. I, um, occasionally will have fast regular beats when I get something I’m allergic to. I have a lot of food allergies. But, um, there’s a big difference between a fast speed and AFib. AFib is an irregular heartbeat which can be fast, normal, or slow in speed. And, you know, what I have sometimes is just an occasional fast beat, but it’s regular, not irregular.

Mellanie True Hills:

So a lot of people, um, can become AFib free through procedures and, you know, through, um, you know, make sometimes lifestyle changes; though that’s not all that common. And as far as numbers of people that can become AFib free, I don’t know that we’ve seen anything that would indicate that. But for most people, there is some kind of treatment that will help them become AFib free.

Mellanie True Hills:

For some it may be medications, uh, they may be able to, um, not have any more AFib because they’re on a specific medication. For others, it may take a catheter ablation, or potentially a surgery, and so there’re, you know, there’re different options. But for some people, um, they, they may have had AFib for so long that they’re not actually able to become a free, but they’re able to lessen the amount of AFib they have. In other words, decrease their AFib burden. And for those folks, just decreasing the amount of AFib can be as much of a blessing as being AFib free because they’re not having to deal with it nearly as often.

Lindsay Clarke:

I see. So for those that are deemed AFib free, does that mean the risks for stroke, and heart failure, dementia, Alzheimer’s are eliminated or is it really, uh, you know, more of a management of those risks?

Mellanie True Hills:

So that’s a really great question, Lindsay, and we don’t really have good answers for it. Um, we know that with a catheter ablation that, um, people are likely to have … Um, if they normally had AFib that they could feel before the catheter ablation, they’re actually more likely to have silent AFib after a catheter ablation. Meaning AFib they can’t feel but it’s still there and they still have stroke risk.

Mellanie True Hills:

So for those who have a catheter ablation, um, whether or not they’re on a, a blood thinner afterwards depends on what their actual stroke risk is and that’s based on a tool called the CHADSVASC score. And it, it counts up how many points you have for different things. And so, um, uh, whether or not they can stay AFib free, um, after catheter ablation and, thus, not have to, um, be on an anticoagulant is kind of an old concept. Um, these days if you were on an anticoagulant or blood thinner before you had your ablation, then you’re more likely to stay on it afterwards.

Mellanie True Hills:

For surgery, um, it’s very, very similar. I actually, uh, was, um, not on a blood thinner for many years because the surgery removes the left atrial appendage. And that’s this little sack that comes off of the side of the heart that’s the source of most of the clots that cause AFib related strokes. And so as part of surgery, that’s typically removed or closed off. And with that gone, you’re thought to have much, much less stroke risk and so typically, you’re not on an anticoagulant after a surgical procedure.

Mellanie True Hills:

But once I reached age 65, I was starting to add up some of those stroke risk factors. And since we don’t have actual data and evidence as to whether you’re safe or not, I consulted five of the world’s top experts on preventing AFib related strokes and after consulting with them, decided that it would be best for me to go back on to an anticoagulant, um, at age 65 because my risk was starting to increase.

Mellanie True Hills:

Part of that is around the fact that we now know that there is not a time connection between having AFib and having a stroke. And so wo-, the latest thinking is that maybe it’s atrial disease rather than AFib that’s causing the strokes and maybe the AFib is really a marker of that atrial disease. And because of that, if you’ve had AFib, you probably have an underlying atrial disease. And that, and even if you’re not in AFib, you still have that underlying disease and, therefore, doing something to prevent strokes is considered a good thing to do and so that’s how I made my decision. And a lot of people, um, do go back on an anti-co, coagulant medication as they start getting older and adding up the risk factors.

Lindsay Clarke:

Well Mellanie, I have been working on AFib for a number of years and I just learned so much that-

Mellanie True Hills:

(laughing)

Lindsay Clarke:

… so thank you. I think the one thing that’s clear is that it’s complicated living with AFib and so people need resources they can trust. So to that end, tell us what stopAFib.org has planned for 2022 and where can people go to learn more?

Mellanie True Hills:

So I appreciate you asking. It is complicated and we believe in bringing in the world’s experts to share the latest thinking and research with our AFib patient community. And we do that throughout the year with things like webinars, and, um, AFib master classes. But our big, big event of the year is our annual patient conference. It’s a three day conference, typically held in person, um, except for the past two years because of COVID and we did it virtually.

Mellanie True Hills:

But even before we, um, went virtual, we had been live streaming the conference around the globe since 2016. And so this year we’re going back to having it in person as well as livestream. It will be in Dallas at the Fairmont Hotel, August the 5th through the 7th. And we’re so excited to be having the in person conference again and having AFib patients getting face to face with the world’s leading expert doctors to ask them their questions. And patients that attend our in person conference leave so inspired to be able to get control of their AFib and to know what they need to know in order to better manage it.

Mellanie True Hills:

And so if, if you can get there in person, please do. Um, if you can’t get there in person, please join us by livestream. And the, uh, web ad-, uh, the, um, website for learning more about the conference is getinrhythm.com, that’s getinrhythm.com. Also, there will be a link to it from our, um, homepage on stopafib.org. Um, that link is not up yet but we’ll be having that, uh, added quite soon.

Mellanie True Hills:

So we encourage anyone that’s interested in learning more to come to this three day conference because it is the answer that so many people have needed in order to become AFib free. We have a lot of people that don’t need to come back because they are AFib free, but then we have a lot who do come back even though they’re AFib free because they want to be able to learn the latest and also share about their experience with others who are looking for their solution.

Lindsay Clarke:

Well Mellanie, I’ve heard amazing things about the conference and it’s exciting that you’ll get to be, uh, in person this year. Um, and, uh, thank you for sharing all the information. Everybody go check it out. But also, um, in the meantime, check out the films that we mentioned that Mellanie helped to review. I think they give a good overview of living with AFib. And then so now before we close, I have, Mellanie, two more lighthearted questions for you that we like to ask of all of our podcast guests. And the first is when you were a kid, what did you imagine growing older would be like?

Mellanie True Hills:

Well when I was younger, my grandmother’s, both of them my Nana and my grandma, cooked huge family meals after church on Sunday and when family came to visit and I thought that’s what Nanas did. Uh, but not this Nana. While I enjoy cooking, it’s hard for me to find the time to do so anymore (laughs).

Lindsay Clarke:

Yeah, I, I don’t think you can travel the globe advocating for AFib and also cook all those meals (laughs), but.

Mellanie True Hills:

(laughing)

Lindsay Clarke:

Well, so what, you know, that sort of what you thought it would be like, what do you enjoy most about growing older now?

Mellanie True Hills:

Well, at age 70 I’m now learning new skills and serving on research study steering committees at, you know, with academic, uh, researchers, learning the nuances of writing medical journal articles, and covering medical conferences around the globe as media, and speaking and sharing patient perspectives for clinicians to help them understand what it’s like to live with AFib and how they can better understand their AFib patients. So, you know, now I am, uh, focused on these skills but I’m also focusing on helping other advocates build those same skills as well so that I can leave a legacy of people who are able to carry on this work and carry this mission forward.

Lindsay Clarke:

Well Mellanie, that’s amazing and we are all better off having you out there doing all of that and advocating, um, you’re an inspiration. So thank you so much for sharing all of this and for joining us. Um, and for everyone listening, thank you for listening to This Is Growing Old and if you’re enjoying the show, please subscribe wherever you get your podcasts. Thank you again, Mellanie.

Mellanie True Hills:

Thank you for the privilege, Lindsay.

Lindsay Clarke:

Oh, my pleasure.