Partnering with Your Care Team

Receiving a dilated cardiomyopathy (DCM) diagnosis marks the beginning of a long-term partnership with your care team. While your doctors bring clinical expertise, you are the expert on your own body. Together, you can create a care plan that supports a long, active, and meaningful life.

Who is on My Care Team?

You are the center of your care team. Managing DCM effectively requires a group of specialists who focus on different parts of your heart health.

Heart Failure Specialist (the “Plumber”)

While a general cardiologist treats many types of heart issues, a Heart Failure Specialist focuses exclusively on the heart’s structure, muscle strength, and blood flow. They have advanced training in the latest DCM medications and therapies to help improve your Ejection Fraction (EF). If you have DCM, especially moderate to advanced disease, having a heart failure specialist involved in your care is strongly recommended.

Find a Cardiomyopathy Specialist

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Electrophysiologist – often called an EP (the “Electrician”)

A specialist who focuses on the heart’s electrical system. They manage arrhythmias and are the experts for devices like ICDs and pacemakers.

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Primary Care Physician (PCP)

Manages your overall health and wellness. They coordinate care with your heart specialists and help you manage other conditions like diabetes or blood pressure.

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Communication Rule: If your doctors aren’t on the same page, ask them to communicate directly with one another. You have the right to coordinated, collaborative care. You have the right to ensure your cardiologist and electrophysiologist (your “plumber” and “electrician”) are coordinating your care.

When to Call Your Doctor (The “Red Flags”)

Knowing what is normal for you – your “baseline” – is critical. A red flag is any significant change from your normal activity level. For example, if you can suddenly only walk half the distance you usually could without getting winded, that is a red flag, and you should seek medical care.

Call Your Doctor Promptly

• *Rapid Weight Gain or Fluid Retention: Gain of 2–3 pounds in a single day or 5 pounds in a week, or new swelling in your ankles, legs, or abdomen.
• Increasing Palpitations or Racing Heart: New or worsening irregular heartbeat.
• Worsening Exercise Tolerance: Noticeable decline in your ability to perform activities you normally could.

Seek Emergency Care Immediately (Call 911)

• Severe Shortness of Breath: New or worsening difficulty breathing at rest, especially while lying flat or waking up gasping for air.
• Fainting or Near-Fainting: Sudden loss of consciousness (syncope) or feeling like you might pass out.
• ICD Shocks with Symptoms: Multiple shocks, or any shock accompanied by chest pain, shortness of breath, or persistent palpitations.

ICD Shock Guidance

Any ICD shock should be reported promptly to your electrophysiologist. If you receive multiple shocks or feel unwell after a shock, seek emergency care immediately.

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Keep a Daily Log

Track your weight every morning – same time, same scale, similar clothing. Recording this daily, along with your blood pressure, can help you and your care team detect changes early.

Getting the Most from Your Appointment

Cardiology appointments move quickly. Use these tips and checklists to make sure you leave feeling confident and informed.

Preparation Tips

• Keep Your Regular Appointments: Even if you feel well, regular follow-ups are essential. These ‘wellness’ visits allow your team to catch subtle changes before they become serious.
• Bring Your Logs: Show your weight, blood pressure, and heart rate logs to the nurse or doctor.
• List All Medications and Supplements: Include exact dosages for every prescription, over-the-counter medicine, and supplement.
• Prioritize: Share your most important concerns or new symptoms first.
• Bring a “Second Set of Ears”: A family member or friend can take notes while you talk with the doctor.

Questions to Ask Your Doctor

• Heart: “What was my most recent Ejection Fraction (EF), and how has it changed?”
• Medications: “Am I on the most effective medications? Should any dosages be adjusted?”
• Rhythm: “Do I need to see an Electrophysiologist (EP) to discuss my heart rhythm or a device?”
• Lifestyle: “Based on my current heart function, what level of exercise is safe for me?”
• Future: “What is the primary goal of our treatment plan over the next six months?”