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The ConfidentPatient:A Doctor Discussion Guidefor Navigating Heart Failure

Looking ahead

Living with heart failure can come with a lot of small changes – some you notice right away, others that seem to slip in slowly. Maybe you’re more tired, more short of breath, or just “not quite yourself.” It’s easy to shrug things off, but they’re worth noticing.

Sharing these shifts helps your doctor see what’s really going on, including whether something like ATTR-CM could be involved. You don’t have to sort through symptoms solo. Letting your doctor in can make things feel more manageable – and help you get the care you need.

A little prep first

Getting ready for an appointment can feel overwhelming, but preparing can definitely help. Before you go, jot down anything that’s been different – changes in breathing, swelling, sleep, weight, or energy. Bring a list of medications and any past test results you have handy, like EKGs, bloodwork, or imaging notes. It can also be useful to know a bit about your family heart history, if you have it.

And if you’re able, bring someone with you. Having another set of ears – and some support – can help in keeping track of whatever comes up.

What to ask your cardiologist

Doctor visits can feel like a whirlwind and it’s normal to wish you’d asked just one more thing. Bringing questions with you can make the appointment feel more centered and give you a clearer understanding of what your cardiologist is seeing. These questions can help you and your care team talk through what’s going on and plan next steps together.

    Diagnosis
  • What type of heart failure do I have? Is it mild, moderate, or severe?
  • Are there any changes in my echo, EKG, or other test results?
  • Given my symptoms, should we rule out other causes, like amyloidosis or ATTR-CM?
  • How does the cause of my heart failure impact how we manage it moving forward?

    Treatment
  • What treatment are you recommending? Are there any other options I should know about?
  • How will we know if this treatment is working, and when might we consider a change?
  • Do you recommend cardiac rehab? If so, what would that look like for me?
  • Which symptoms should I call about right away?
  • What’s the best way to reach your team if something suddenly feels different?

    Ongoing management
  • What should I track at home? How often should I check things like weight, blood pressure, or pulse?
  • What’s the easiest way to keep track of my readings?
  • Are there activities I should limit – or ones you’d like me to increase?
  • How much fluid and salt should I aim for each day?

Bringing questions like these can help you walk into your appointment feeling more prepared – and walk out feeling more supported and informed about your care.

Symptom Check-in

What’s been different lately?

Symptoms can change over time. Checking in with yourself can help you notice patterns that give your care team important clues about what’s going on. Let’s see how you’ve been feeling lately.

In the last month, have you noticed any of the following?

☐ Shortness of breath
☐ Needing to sit up to sleep comfortably
☐ Unexpected weight gain
☐ Swelling in feet, ankles, or legs
☐ Increased fatigue
☐ Heart palpitations or chest discomfort
☐ Lightheadedness
☐ Mental fog
☐ Feeling of fullness or bloating
☐ Decreased ability to do usual activities

The Check-up

Putting symptoms into words

Talking about how you feel isn’t always easy. But sharing even these details can help your cardiologist understand what your days actually look like. Try starting with simple phrases like:

  • “I’ve noticed changes in my breathing during activities I used to do easily.”
  • “My energy feels different – I get tired faster than I used to.”
  • “Something feels ‘off,’ but I’m not sure how to describe it.”

You don’t have to have the perfect words. You just need to share what’s been changing – your care team can help you navigate the rest.

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