The patient is the most important member of the healthcare team. You know your body the best, you’ve been living with congenital heart disease, and you’ve got the firsthand account of your medical history. For some people, managing their health can be a full-time job, and I want to share some ways you can help succeed in collaborating with your team.
- Take ownership of your control. There are many things that are out of your control when it comes to your CHD, but there are also many ways you can contribute to making your team work well. For instance, schedule your appointments in a timely manner, take medications as prescribed, get testing done and notify your team when it’s been completed, and come prepared to each visit (with a list of questions/concerns and symptoms).
- Communication is key—your healthcare team doesn’t know something is wrong unless you tell them. If it has to do with your heart, just call. You are NOT bothering anyone. Your providers want to know before it gets seriously dangerous. If you’re waiting on a test result, are frustrated with any part of your care, or are having concerns of any kind, your team wants to know.
- The internet is fantastic for connecting the CHD world and empowering yourself through research and self-education, but beware of engaging in CHD comparisons and “Dr. Google.” CHD is highly specialized, so finding legitimate information online can be challenging, and each CHD journey is individualized and each treatment plan is tailor-made. Please don’t change medications or self-diagnose yourself. Talk with your cardiology team.
- Discuss with your team “things to watch for.” With CHD, it can be hard to distinguish between life-threatening, concerning or urgent symptoms. Talk with your cardiologist about which symptoms require a call to 911 or an ER visit, which ones you should call the office about, and which to monitor and discuss at your next scheduled appointment. If in doubt, just call (see #2).
- Keep track of your support. Make a list of the important people involved in your healthcare: your primary care doctor, your health insurance contact, your pharmacist, your local cardiologist (if you have one), and your entire ACHD cardiology team.
- Find emotional support. If you’re reading this on the ACHA website then you’re already plugged in to the fantastic peer support available, but if you think you’re depressed or anxious, ask for a referral to a mental health specialist.
- Know your insurance coverage. When establishing or changing health insurance, make sure you are able to continue care with your ACHD provider. Ask your ACHD clinic for help in appealing insurance denials.
- Keep all medical records. Always ask for copies of your medical records, and make copies to share with your doctors, now and in the future. That “keepsake” copy of your one-year-old operative report paints a big picture for your ACHD cardiologist, so be sure to bring a copy for his or her review.
- Most importantly, speak up. If something doesn’t feel right, if something makes you uncomfortable, if the information being told to you doesn’t seem right, or if someone is calling you by the wrong name… SAY SOMETHING. Healthcare professionals are human; they make mistakes. Ultimately, your consent is required—do not forget that.
I hope my tips help you understand just how important you are to your medical care. As a patient I never really understood my role in my care, but now, as a nurse, I see just how central we are to the successful collaboration of our healthcare team.
Add yours below.
The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.
The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.