What to Expect at Your First Appointment at the Hereditary Hemorrhagic Telangiectasia Center of Excellence

Hereditary hemorrhagic telangiectasia (HHT) can affect several areas of the body, so you or your child will likely need to see several different specialists. The Cincinnati Children’s HHT Center of Excellence includes specialists from many different backgrounds who will work together to treat you or your child. While we strive to schedule appointments on the same day, you may need to come back on a few different days so you or your child can work with the right specialists and complete the necessary imaging.

Making an Appointment at the Hereditary Hemorrhagic Telangiectasia Center of Excellence

We want it to be easy for you to get the care you or your child needs. You can contact us directly to schedule an appointment. Or, your provider can also make a referral. We also take referrals from the emergency department and other hospitals.

Before Your Appointment

A nurse will contact you before your appointment to prepare for the upcoming visit. During this call, we will:

• Gather information about symptoms, health history and past treatments.
• Collect past test results and medical records (We’ll provide instructions on how to share this information with us).
• Provide pre-visit instructions.

During this call, we can also answer questions you have before your visit. Of course, you’re welcome to call any time before or after your visit. We advise you to contact your insurance company to verify your benefits and referral requirements. Specifically, you should ask about coverage for the review of pathology and radiology imaging. We may need these tests to make an accurate diagnosis.

On the Day of Your Visit to the Hereditary Hemorrhagic Telangiectasia Center of Excellence

Arriving At Your Appointment

Our center is in location B5. When you arrive for your appointment, please park in the Building B parking area. Walk to the B1 Welcome desk on the main concourse and take the elevator to the 5th floor.

You will need to arrive about 45 minutes before your appointment—15 minutes to park and walk to our clinic, 15 minutes to check in at our registration desk and 15 minutes to get checked in by your nurse.

If you are running late, please contact us.

At Your Appointment

You or your child will be undergoing a comprehensive evaluation so we can make an accurate diagnosis. We will evaluate you or your child through a physical examination, pulse oximetry check and possibly blood tests and medical imaging tests, that may include magnetic resonance imaging (MRI), contrast echocardiograph (bubble echo), CT scans, ultrasonography or angiogram.

Typically, you or your child will be seen by an attending physician, genetic counselor, social worker, research staff, and a registered nurse. You may also see a neurologist, pulmonologist, ENT (otolaryngology) or interventional radiologist at the appointment in the HHT clinic.

Depending upon the availability of the specialists who need to evaluate you or your child, your appointment may last one day or several days. Afterward, our team will develop a comprehensive treatment plan, which could include surgery, interventional radiology, medication or simply monitoring over time.

After Your Visit to the Hereditary Hemorrhagic Telangiectasia Center of Excellence

You will receive an “After Visit Summary” at the end of your appointment, which includes important information about upcoming appointments, test results, referrals to specialists and all medications (including new prescriptions). It will also include contact information for your care team.