Hypertrophic cardiomyopathy (HCM) is a genetic condition that makes part of your heart muscle grow thicker than normal. This means your heart has a harder time pumping blood to your body. If you’ve just gotten an HCM diagnosis, you probably have a lot of questions. I’m Lindsay Davis, and I’ve lived with HCM for over 20 years. I’ll walk you through your doctor’s visits as you learn more about your condition.
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0:52As you get ready to see your doctor in person, take some steps to prepare yourself so you get the most out of your appointment.
“An HCM diagnosis doesn’t mean your life is over. There are things you’ll have to do to keep yourself safe, but they're manageable. You're still going to be able to live a big, beautiful life.”
You may feel like you don’t know much yet, but that’s OK. Here are some ways to get ready for your doctor visit.
Your doctor’s time will be limited, so you want to be sure to use it well. Along with the questions you’ve already thought of, I suggest these questions, too.
Save & Share the questions for your appointment.“For me, social media has been an incredible resource. Being able to communicate with others who have the condition has been really helpful.”
Once your appointment is over, it’s time to digest and organize the information you received.
Keep it all together. I use a physical binder because my doctor’s office always gives me a printout when I leave any appointment. I file them in my binder, along with any other medical papers like bills, test results, or medication printouts. Having everything in a binder means I can easily find test results or medication lists later.
Know your way around your online portal. Many providers use patient portals, which is a tool for accessing your personal health information, communicating with your doctors, managing appointments, and viewing and paying your medical bills. If you have missing information in your physical binder, you can often find it here.
Learn how to communicate with your team. My doctor uses MyChart for nonemergency messages. I'm able to send a message to my doctor saying, “Hey, I'm having extra edema this week. Should I up my diuretic?” or “Should I go get blood work if I'm upping my diuretic?” It's very nice to be able to not have to wait six months or a year between checkups to be able to speak with your provider.
Find community. The more I’ve talked about my story on social media and used hashtags, the more people I’ve been able to connect with. It’s funny, people reach out to me thinking I'm going to guide them. But I get just as much help back. One of my favorite quotes is, “As we work to create light in the lives of others, we naturally light our own way.”
Lindsay Davis, Miss Ohio 2011, was just 17 when she collapsed during dance practice and learned she had hypertrophic cardiomyopathy (HCM). The diagnosis forced her to give up her dream of performing with the Paris Opera Ballet. But it set her on a new path as an advocate for those living with HCM, and for heart health awareness. She shares her health struggles to help push for earlier diagnosis, better education, and stronger protections—work that helped lead to the passage of “Lindsay’s Law” in Ohio in 2017. The law helps raise awareness of sudden cardiac arrest in young athletes. Today, she continues to model and speak publicly, using her platform to highlight the importance of patient voices for HCM and subtypes like HOCM, and promote equal access to care. While her own dreams may have changed, they never stopped.
