Are you starting Adult Congenital Heart Disease (ACHD) care for the first time or moving away from your current center? Finding a new team and getting through your first visit with a new doctor can be challenging. Here are some steps to consider as you begin choosing your new care team, prepare for your first appointment, and continue follow up care.
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Finding Your New Team
Ask your current pediatric care team for a recommendation:
- Do they know a Pediatric Cardiologist in the region to which you are moving?
- Can they recommend a Transition Program? (Your current center may have one). This type of program can help you slowly work your way up to seeing an Adult Congenital Heart Disease (ACHD) doctor and care team.
- Can they recommend an ACHD Doctor and Clinic?
Use Conquering CHD’s Hospital Navigator tool to learn more about potential centers for your care.
Before Your Appointment
Make sure the new doctor or team accepts your insurance.
When you make your appointment, consider asking for the office
manager to learn more about the practice prior to your visit.
Have Medical Records sent to your new center.
- Ask your current center what the process is for requesting medical records
- Ask how long the process takes, digital records are often quicker than paper copies
- Request an extra copy for yourself. When choosing a format to receive your records, be sure to consider whether your information will be safe. If you’re unsure, ask
Ask your current team to help you write down the key points you
should share with your new team.
Ask if your current provider will communicate with your new
Put together any questions you have for your new team. Use our
Guided Questions Tool – ACHD Edition to give you ideas, or bring
the tool with you.
Day Of Your Appointment
Call ahead if you are uncertain where to go or if you are running late
Bring someone with you. There is a lot discussed during each visit, support is helpful.
- It is ok to ask the person you bring to step out of the room while discussing private topics.
Bring your insurance card and identification.
Bring your question list and a notebook to write down the answers
your care team gives you.
Bring a copy of your records, even if you had previously requested to have them sent to the hospital.
Try to arrive 15 minutes early as you may be asked to complete new paperwork.
During Your Appointment
Ask any questions you have, don’t be shy. No question is too silly.
An open relationship with your team is important. Be sure to answer the questions your team asks you honestly and as completely as possible.
Share the key points from your previous care team and an overview
of your medical history
Ask the new provider how best to reach them for routine questions
as well as in an emergency.
Ask your provider if there are other locations where you might see
them, either for routine appointments or testing and procedures.
Ask your team if there are other doctors in the practice that may
treat you, if your doctor is not available, or that you would see in
clinic or in the hospital.
Ask how far in advance you need to make an appointment for
something that isn’t urgent.
Ask your team for a list of resources for needs beyond your heart,
- Providers that treat other diagnoses, such as mental health, liver disease, neurodevelopment.
- Services such as social workers, financial counseling, and occupational or physical therapy.
- Local groups that offer support for those with CHD.
After Your Appointment – Before Leaving The Office
Confirm with the new hospital/care team that they have a copy of your records.
Schedule any follow-up appointments and testing recommended during your visit.
Get contact information for any additional providers you were told to see.
After your Appointment – At Home
Follow recommendations made by your care team during your appointment. If any instructions are unclear, call and ask your team to explain further. If you are uncomfortable about these recommendations, consider getting a second opinion.
Take prescribed medication as directed by your care team.
Schedule any needed appointments with additional providers you were asked to see.