Is Your Obstructive Hypertrophic Cardiomyopathy Getting Worse? How to Spot the Signs of Progression

It starts silently: You take the stairs a little slower. You let someone else carry the groceries. You skip an afternoon walk one day, then maybe again the next. You chalk it up to a busy week or poor night’s sleep.

“If you were always able to do a particular activity, and all of a sudden you are stopping short, finishing something early, or avoiding an activity, that is usually a sign that there’s maybe some symptom that we need to evaluate a little bit further,” says Jessica Lauren Atkins, MD, a cardiologist specializing in hypertrophic cardiomyopathy at Medical University of South Carolina Health in Charleston.

One way to see if symptoms are progressing: Take stock of what you were able to do a few years ago, and compare it to your current abilities. Here’s how.

Before your next appointment, make a list of what you could do two years ago versus what you’re able to do now. The symptoms of obstructive hypertrophic cardiomyopathy — chest pain, fatigue, heart palpitations, lightheadedness, shortness of breath — can all vary from day to day, depending on whether you’ve had too much to eat or drink, for example. So you’ll get a more accurate impression of whether symptoms are progressing if you look at them over the long term, says Dr. Atkins.

Ask yourself:

• Can I carry groceries up the steps without stopping to catch my breath?
• Can I walk the dog around the block without feeling lightheaded or dizzy?
• Could I once climb the stairs without pausing but now find myself resting partway up or taking the elevator instead?
• Have I cut back on workouts, sports, or regular exercise routines because physical exertion triggers unusual shortness of breath, chest tightness, or a racing heart?
• Have I quietly given up a hobby or activity, because it leaves me more winded than usual?
• Am I more fatigued than normal, even after a restful night’s sleep or during light activities?
• Am I delegating more household chores than normal?
• Do I now avoid warm or humid days, because they make me feel short of breath?

If you answered yes to any of these, it doesn’t necessarily it’s mean an emergency. But it may be a sign of a worsening symptom, so it warrants a conversation with your doctor, says Atkins.

There’s a big difference between pacing yourself as part of a thoughtful care plan and quietly rearranging your life to avoid symptoms you haven’t told your doctor about.

That’s why it’s worth speaking up about any changes you’re experiencing. Your cardiologist might assume everything is fine when, in reality, the current treatment is no longer effective. Hiding those small adjustments can delay important next steps, such as tweaking the medication, exploring newer treatments, or discussing other procedures, such as septal myectomy or alcohol septal ablation.

Atkins recommends keeping a simple diary of what you’re currently able to do and watching how it may or may not change over time. This, she says, is better than relying on memory alone.

Be as specific as you can. For example, instead of telling your cardiologist you feel tired, explain that you used to walk two blocks to the mailbox without stopping and now need to rest halfway. Activity-based examples give your care team something they can actually measure and compare visit to visit, which can help them determine whether the symptoms are a side effect of medication or caused by the disease’s progression.

If you’re not sure whether something is worth mentioning, Atkins suggests bringing it up anyway. Building an open, trusting relationship with your cardiology team makes it easier to raise concerns sooner rather than later — and before a small change becomes a serious one.