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Frequently Asked Questions
- How do I set up an appointment with the Johns Hopkins HCM Center of Excellence?
- How do I prepare for a visit to your center?
- What is included in a typical HCM Center visit?
- How often do I follow up?
- What is a genetic counseling visit
- What if I only have a question?
Appointments are scheduled over the phone. Either you or your referring doctor can call us at 443-997-0270 (adult scheduling) or 443-9975437 (pediatric scheduling).
We usually contact your referring doctor and obtain all your medical records. If you have other records or notes please feel free to mail or fax them to us. We suggest you write down any questions or information you would like to share or ask us during the visit and bring it with you or feel free to send us this document ahead of the visit. Several of our tests will need you to wear comfortable clothing and appropriate footwear, like sports shoes.
Please let us know if you have any medical concerns, have any devices implanted in you, particularly cardiac devices. If you have a defibrillator (ICD) please provide information on the manufacturer, and which doctor’s office conducts your regular follow-up for the ICD and their contact telephone number.
Due to the unique nature of HCM, our clinicians will need several pieces of information in order to optimally manage your care. Depending on your previous evaluations, your appointment may include the following:
- An ultrasound of the heart (echocardiogram)
- Cardiac MRI scan – magnetic resonance scan
- ECG/EKG – electrocardiogram
- Appointment with one of our cardiologists who specializes in HCM
- Genetic counseling appointment
Our clinic goal is to make this visit as convenient as possible for you and your family. We will accommodate and work with you in scheduling your tests and visit. If you need to be seen earlier in the day or later, please let us know and we will do our best to work with your needs as we schedule the various appointments.
We believe that a genetic counselor is a key member of the multidisciplinary team caring for patients with inherited heart disease. We also feel (as is recommended by professional cardiology guidelines) that generic counseling is necessary whenever performing genetic testing to make sure that the patient understands the benefits, limitations, and outcomes of genetic testing. Genetic testing is not a mandatory part of the visit and you and your genetic counselor may decide together that genetic testing is not something you want to pursue at this time. However, if you do elect to proceed, genetic testing in many cases can be sent at the time of your genetic counseling visit.
For more information regarding genetic counseling at the Johns Hopkins Center for Inherited Heart Disease, please click here.
The follow up visits depend on the findings noted in the interview, examination and test results. There may be a need for several repeat visits but in most mild cases we follow patients on a yearly basis.
We are happy to take calls and answer your questions about HCM. Please note that our responses may be more generic rather than specific depending on the amount of information you are able to provide us.
To make an appointment at the Johns Hopkins Hypertrophic Cardiomyopathy Center of Excellence, please call 443-997-0270 (adult scheduling) or 443-997-5437 (pediatric scheduling).