Knowing What to Know

One of the hardest things about being an adult with congenital heart disease is knowing what to watch for and when to call the doctor. For the longest time I hesitated before calling my doctor for something I was concerned about. I didn’t want to bother him, I didn’t want to seem annoying, and I wasn’t sure if my issue was worthy of a call. Now, as the person who receives the calls, I’m here to tell you the importance of calling.

ACHD patients’ knowledge base regarding their CHD and health is varied. There are the patients who have medical training (like myself), received honorary medical training from their cardiologist or parents, or have simply dedicated hours to research and self-driven education on their condition. There are also patients who were sheltered from the knowledge, were anxious about learning more, or who simply have a difficult time understanding the complexities of their condition. Whatever range you fall into—it doesn’t matter.

Your job is not to figure out what is going on—you are not Dr. Google. Your job is to know the number to call and the person to talk to about the issue, and have him or her help guide you in what to do.

In my experience, I have found it helpful to categorize my question/issue into four categories: not active, active, urgent, and emergent.

Not active questions are general questions that can wait for your next clinic visit, or can be messaged to the office with no definite deadline for response. Examples of these questions include “What does that one thing on my MRI report mean?” or “When do you think we should do another catheterization?”

Active questions are general questions with a timeline. You can’t necessarily wait until the next clinic appointment (especially if it’s a year away), but you don’t need to wake anyone at night for this. These questions are best asked during regular business hours—make sure the person taking the message knows your timeline. Examples of these questions would include: “I’m going to the dentist in two weeks, do I need to take antibiotics before?” or “I need help scheduling an appointment with radiology for that test you ordered.”

Urgent questions are usually related to new or worsening symptoms. You can further categorize these as “Can it wait until the morning?” vs “I need to call someone now.” If you’re not sure—just call. Your doctor shouldn’t get mad if you’re having symptoms that are keeping you up at night.

Emergent issues are active symptoms that are impacting your life to the point where you need to be evaluated ASAP. Generally speaking, if you’re thinking about calling 911—just call 911. People call 911 for a ride to McDonald's—you have congenital heart disease. You have a legitimate reason to call 911.

When in doubt, just call. The cardiac care associate (nurse, nurse practitioner, physician assistant) is there to help you and to be the liaison between you and the doctor.

I encourage every patient to know your doctor’s urgent number, find out if they have a 24/7 number, and to ask your doctor what symptoms would be concerning for their individual CHD.

Luckily, ACHA has developed a wonderful tool—the Personal Health Passport. I encourage everyone to complete this passport and have it handy in case of emergencies. You may be the knowledgeable, medically-trained patient, but it is very hard to explain your complicated cardiac history when you are not feeling well, or Heaven forbid, unable to.

Go over the passport with your doctor or cardiac care associate at your next appointment. Most of your important information is included in the passport. If your doctor’s office does not have an ACHA health passport available to you, contact ACHA and they will mail you one, or download a PDF of the passport here. 

I’ve filled mine out—have you?