Heart Disease: About Congenital Heart Disease in Adults
Adult congenital heart disease (ACHD) is a rapidly growing subspecialty that deals with adults who were born with congenital heart disease (CHD). Congenital heart conditions are the most common birth defects, affecting nearly 1 percent of all babies born. With dramatic success in pediatric cardiology and cardiac surgery, we now estimate that more than 90-percent of these babies survive into adulthood. Because of their improved survival, we now have more adults with congenital heart disease than children. In the U.S., it is estimated that we have over 1 million patients with some form of CHD, and in the next few years this number will increase.
Congenital Heart Disease Care at University Hospitals
Why Specialized Congenital Heart Disease Treatment is Needed
Most patients with congenital heart disease undergo repair during infancy or childhood; but it's important to remember that these patients are not cured but only repaired, and often require further treatments for their heart defect as adults. They are at increased risk of developing irregular heart rhythms (arrhythmias), narrowing or leaky valves, pulmonary hypertension, heart failure, and premature death. Many of them also have medical and psychological issues that require care from dedicated specialists outside cardiology. Because of this, CHD patients require lifelong follow up care with a specialized team of physicians and nurses who understand their unique complexities.
- Why Choose Us?
We’re One of Few
There are very few specialized adult congenital heart disease centers in the U.S. that provide care to patients with a heart defect. Some of these dedicated ACHD programs offer care in pediatric hospitals; others provide care in adult hospitals. But the common factor is that these medical programs provide an integrated team with expertise in congenital heart disease treatment.
It is important for patients with congenital heart disease to see pediatric heart specialists along with the adult specialists. Because in the past many children with CHD did not survive into adulthood, most adult cardiologists never received specialized training on the intricacies of CHD defects and repairs. Now, because of the many medical advances in CHD care, there are many adults living with congenital heart disease, making the partnership between pediatric and adult specialists key to maintaining optimal health.
Interconnected Facilities, One Geographic Location
The Adult Congenital Heart Disease Program at UH is unique in that we offer the health services of both an adult hospital and a children’s hospital, a women’s hospital (UH McDonald Women’s Hospital) and a cancer hospital (University Hospitals Seidman Cancer Center) – all in one geographic location. These facilities are interconnected, providing patients easy access to our heart failure, pulmonary hypertension, and maternal cardiac clinics. It also allows for seamless inpatient transfers and collaboration between our multidisciplinary experts.
We Facilitate a Seamless Transition into Adult Care
The close collaboration between pediatric and adult caregivers helps manage these patients with congenital heart defects and facilitate a seamless transition into adult care. This smooth transition is essential in closing medical care gaps that can arise if pediatric patients discontinue follow-up care once they become adults. Very few congenital heart disease programs in the country have this expanded capability all under one roof.
Our adult congenital heart disease team is not only committed to providing comprehensive patient-centered care but also offers education to our patients and their caregivers. As an adult congenital disease survivor, we understand your challenges and success stories, and we are committed to improving your quality of life and long-term survival. ACHD team members are available and easily reachable 24/7 to answer any of your questions or concerns.
- Our Team
Leadership at University Hospitals has recognized the burden of this rapidly growing population and their medical needs. The ACHD team at UH is a collaboration between adult, children’s and women’s specialists who are passionate and dedicated to providing their knowledge and wisdom for the best care possible. Our team include:
- Congenital heart surgeons
- Pediatric and adult interventional cardiologists
- Pediatric and adult cardiac imaging experts
- Pediatric and adult electrophysiologists
- Pediatric and adult cardiac anesthesiologists
- Pediatric and adult heart failure experts
- Pulmonary hypertension experts
- Maternal fetal medicine (high-risk pregnancy) specialists
- Our Services
Adult congenital heart disease services we offer include:
- Outpatient and inpatient evaluation, management and continued care
- High-risk pregnancy program with genetic counseling for women with ACHD
- Diagnostic imaging services
- Transthoracic and transesophageal echocardiography
- Magnetic resonance imaging (MRI) and computed tomography (CT) scans
- Electrophysiology services, including radio frequency and cryoablation ablation, pacemaker and automatic implantable cardioverter-defibrillator (AICD) implantation
- Diagnostic and interventional catheterization
- Adult congenital cardiothoracic surgery
- Heart failure and pulmonary hypertension management
- Advanced heart failure therapies including mechanical assisted devices and transplantation
- Your First Appointment
Prior to your first appointment with the UH Adult Congenital Heart Disease Program, you will receive a letter, e-mail and/or a phone call informing you about the time of your appointment. Usually this appointment will include a series of tests, planned in advance, as well as a meeting with an adult congenital heart disease (ACHD) cardiologist.
When You Arrive
The first person you meet at the Adult Congenital Cardiac Clinic is the receptionist. To sign in with the receptionist you will need your insurance card. If you do not have one, please bring another form of government-issued photo ID (such as a driver’s license, passport, etc.). After you sign in, you will be guided by the ACHD clinical navigator.
How Long Will Your Appointment Be?
First appointments take longer than follow-up appointments. Your first appointment can take many hours, depending on the number of tests you require. While you are in the clinic, you will likely have an echocardiogram and an electrocardiogram (ECG), and you may have bloodwork and other tests such as an exercise test or other imaging tests. Follow-up appointments usually take less time but this will depend on the number of tests you are scheduled for (if any).
We do our best to stay on time. Unfortunately, your appointment may be delayed by unforeseen circumstances. We recommend that you come prepared for delays.
Before You Leave
At the end of your first appointment, the nurse or doctor will give you a contact list for your health care team. If you don't get a contact list, feel free to ask for it. During your first appointment, you'll be asked if you would like us to communicate with you by email. If you do, we'll ask you to fill out a consent form. This form outlines the risks of email communication and how it can be used safely. Many patients find email a convenient way to communicate with the team. Email should not be used in emergencies.
After every appointment, a member of your health care team will tell you about your next visit. Be sure you understand what is going to happen next. For example, know the time and place of your next visit or if someone will call you with this information.
If you are unsure about what your next steps are, don't be afraid to ask a member of your team. We are here to help you.
What to Bring
- CD or DVD of your imaging studies/health records: Your referring doctor may give you a CD or DVD of imaging studies such as X-rays, CT scans, or MRIs you may have had done. If so, it is very important to bring this CD or DVD with you. You should also bring, or send in advance, all records you may have regarding your previous consultations, surgeries and interventions, or let the clinic know in advance how to access these.
- List of all medications you are currently taking: This includes prescription medications, over-the-counter medications, vitamins or supplements and herbal remedies.
- Medications that you need to take: Appointments can take several hours. Bring with you any medications you normally take during the day.
- Record of any changes: Make notes about any changes in your condition that you've noticed since your last visit and bring these notes to show your doctor.
- A trusted friend or family member: A friend or family member can give you emotional support and can help you make good choices. They can also help you gather information, take notes and ask questions.
- List of doctors and hospitals: Bring a list of doctors you have seen in the past as well as the names of the hospitals where you have been treated. If you have access to your old records including surgical reports and consultations, do bring a copy of all of them, or have this information sent to us before your appointment.
- Questions to ask: Bring a list of questions to your appointment to help you remember everything you want to ask.
- Referral Information for Clinicians
If your patient needs immediate, urgent care, please do the following:
- You must make direct contact with the appropriate physician to complete an urgent referral.
- Call the UH Rainbow Fellow on call at 216-844-3437 or the adult congenital heart disease staff physician on call at 216-286-5239 for an urgent referral and hospital admission.
Please note: All ACHD referrals are considered urgent.
To complete the standard referral process, first download and complete the Cardiology Consults referral form. Once you have completed the form, fax it to 216-284-5478 or directly to the physician.
The form will be reviewed to ensure that it is complete; if incomplete, the form will be returned to you. We will notify the patient directly of his or her appointment either by letter or phone.
It is extremely important to ensure that your patient brings the following, as these will be required at their first appointment:
- Old records
- Previous imaging studies
Checklist for a Complete Referral
In addition to the completed referral form, make sure to include:
- A letter of referral
- Clinical notes
- Previous imaging studies
- Old records
- Our Program Goals
The goals of the UH Adult Congenital Heart Disease Program are to:
- Provide long-term care to improve quality of life and long-term survival
- Smoothly transition from childhood through adolescence into adulthood
- Provide comprehensive medical care tailored to each individual
- Counsel and facilitate a safe and successful pregnancy for women with ACHD
- Participate and support local and national ACHD groups and organizations
- Collaborate with other centers to advance knowledge and research
High-risk Pregnancy Program
Learn about our collaborative pregnancy care for women with Adult Congenital Heart Disease.
Adult Congenital Cardiothoracic Surgery
Learn about some of the most advanced technologies available for interventional heart care that UH offers.
Transition into Adult Care
Learn how we help teens and young adults with Congenital Heart Disease transition to adult care.
Meet our Team
The UH ACHD team is a collaboration of specialists dedicated to providing the best care for our congential heart patients.