Our Titans of Thrombosis series honors advocates and experts in the thrombosis field and showcases their important contributions.
On a rainy night in March 2003, Mellanie True Hills stepped off a plane and could barely breathe as she made her way up the jet bridge. A few days later, she found herself in the ER with a 95% coronary artery blockage that required emergency stent placement. After nearly dying during the procedure, she decided to make some immediate lifestyle changes and was on the road to recovery, or so she thought. Seven months later, she landed back in the ER with a numb leg, blurry vision, and a racing heart. Her workup revealed blood clots in her leg and a close call with a stroke. The doctor told her that these complications stemmed from atrial fibrillation (AFib), a condition she didn’t even know she had. Her medical team sent her home with some medications (including warfarin) and assured her she’d be fine.
As Mellanie looks back on her AFib experience, she recalls that “things were not fine. When your heart takes off racing and you can’t breathe, it’s scary. I felt like I was a ticking time bomb. I wasn’t stable on my blood thinner and felt like I could have a stroke at any moment. I lived in total fear.” Mellanie’s family was similarly concerned and traveled with her everywhere she went. “We made sure we were always close to a hospital when we traveled. My AFib just took a toll on all of us.”
In the summer of 2005, Mellanie learned that she was eligible for a new, minimally invasive procedure. “That fall, I underwent surgical ablation and had my left atrial appendage (LAA) removed. The LAA is a small sac in the left heart chamber where clots can form,” she explained. The surgery stopped her AFib, but her work wasn’t done.
“After I was AFib free, I kept saying that somebody needed to do something about this condition. Someone needed to raise awareness and it might as well be me!” In 2007, she launched StopAFib.org, a nonprofit resource dedicated to educating patients with AFib. She continues to serve as the organization’s CEO. She then led the charge to institute a national awareness campaign and in 2009, the US Senate declared September as National Atrial Fibrillation Awareness Month. She kicked off the “Get in Rhythm. Stay in Rhythm.® Atrial Fibrillation Patient Conference” in 2013, the first ever multiday, patient-facing AFib conference in the US. The 6th annual conference took place last week in Dallas, TX.
We recently sat down with Mellanie to get her perspective on a few important questions.
Q: Knowing what you know now, what would you tell a patient newly diagnosed with AFib?
I speak at medical conferences around the globe and a key message I deliver to patients and healthcare providers (HCPs) is that because AFib is so complicated, trying to deal with it in a single visit isn’t feasible when someone is newly diagnosed. A better approach is to have two visits. The initial appointment should be a “diagnostic debrief,” where patients can learn more about what AFib is and what it means for them and their lifestyle. Clinicians can address the patient’s most urgent issues and guide them to educational resources. After that, the patient should return for follow-up to discuss pressing questions, management options, etc.
It’s also critical to be aware of the link between AFib and stroke. We’ve taken part in some research that’s identified a major disconnect: more than 90% of healthcare providers say that they always tell patients about the risk of stroke in AFib, but half of patients say that they don’t remember hearing anything about stroke risk.¹ That’s a big issue and I think that the “dual-visit” model could potentially address this communication gap.
Q: How can patients with AFib effectively advocate for themselves?
I tell patients to prepare for a doctor’s appointment like you’d prepare for a business meeting. Formulate your goals in advance and think about the following:
- What questions do you have? Make a list.
- What’s the priority of those questions? You may not get through your whole list in a 5- to 15-minute appointment, so determine which questions are high-priority.
- What are your values and preferences? What should your HCP know about you so they can devise an appropriate care plan?
- Who’s on your healthcare team? Will you be seeing your primary care provider, a cardiologist, an electrophysiologist, a nurse, or multiple HCPs? Become familiar with each clinician’s role in your care.
- Who do you want on your personal healthcare team? It’s a good idea to have another set of eyes and ears at your appointments, so who will you take with you? A spouse? A son or daughter? A friend? Who will help you by being an advocate and what role will they play in your care?
According to research, more than 90% of HCPs say that they always tell patients about the risk of stroke in AFib—but half of patients say that they don’t remember hearing anything about stroke risk.
Q: What’s the most significant change that you’ve observed in the AFib space since you were diagnosed?
The rise of the educated AFib consumer is probably the most significant thing that’s happened over the last several years. There’s a ton of information out there now specifically for patients. When I started my organization, there was nothing—and I mean nothing. We now have close to 800 resources for patients and their families/ caregivers on StopAfib.org and nearly 80,000 posts in our discussion forum. We’ve also partnered with the American Heart Association to create MyAFibExperience.org, an online community for patients. None of this stuff existed 10-15 years ago, so this is a big change and I’m thrilled to be a part of it.
¹ Out of Sync: The State of AFib in America. https://www.stopafib.org/newsitem.cfm/NEWSID/159/.