When your HCM treatment is negatively impacting your quality of life, your doctor wants to know. I’m Lindsay Davis, and I’ve lived with HCM for over 20 years. I’ll walk you through your visit with your doctor as you explore why your side effects could be happening and how to manage them.

“Because of my experience with treatments, I know now to promptly deal with any side effects I have. I call and I let my doctor know right away. Sometimes a dose adjustment or switching medication makes all the difference.”

If your side effects are weighing on you, the bottom line is to get you feeling better. You can help your doctor help you by prepping for your visit in a couple of ways.

As you talk to your doctor in person, make the most of your time together. Come with your own questions and answers for those your doctor might ask you.

Maybe this is your first time dealing with a health care team on a regular basis. That can feel intimidating. But remember, you’re also an important member of your team. If you’re having issues, raise your concerns and ask your questions.

It’s important to connect with others living with HCM. Patient support communities can be a good place to share experiences and feel less alone. You may even find people who have dealt with exactly the same side effects you have.

I also find it helpful to talk to my support network after an appointment and explain what was discussed. Saying it out loud helps me confirm that I understood everything, and it gives someone else a chance to ask questions I may not have thought of.

It's also key to stay in communication with your doctor. Especially if you’re trying a new treatment, keep in contact so they know how things are going. I've tried a range of medications: diuretics, beta-blockers, calcium channel blockers, and I've definitely had side effects like dizziness and fatigue on some of them. When that happens, I don't wait until my next appointment — I let them know right away so I can feel better.

And keep learning. Knowledge is power. I wrote a children’s book called Lindsay’s Big Heart together with a doctor, and although it’s meant for kids, I’ve had many adults tell me it helped them understand their condition better. Don't be ashamed to use resources meant for kids or things that seem simple. They can help you be a better, more informed patient so you get better care.