Preparing for Your Appointment with the FORWARD Program
Before your appointment
Families interested in scheduling an appointment with the Fontan Rehabilitation, Wellness, Activity and Resilience Development (FORWARD) Program can call a dedicated phone number (267-426-3057) to make their appointments.
Once an initial inquiry is made, parents, guardians or adult patients will be asked to:
- Provide general information
- Send medical records
- Relay insurance information
Then, families or patients will speak with a dedicated FORWARD Program nurse practitioner to determine when best to schedule a day of testing and a visit to our multidisciplinary clinic. Before the visit, a financial counselor will also speak with your family to better understand co-pays, insurance and any other financial issues.
About your visit
Patients with single ventricle heart disease who have been treated with the Fontan procedure can have a variety of long-term health care issues that need to be regularly monitored to ensure early detection and the best outcomes.
The FORWARD Program offers age-specific comprehensive assessments as follows:
- 4 to 7 years old (early childhood; typical age for the initial surveillance visit after Fontan operation)
- 8 to 11 years old (later childhood)
- 12 to 18 years old (adolescence)
- 18+ (young adult)
Additionally, we provide surveillance evaluations for specific complications. It is important to note that not every individual will receive the same tests or assessments — and it is not common for an individual to receive all the assessments below. Each patient's care is customized to meet their individual needs and risk-factors.
Cardiovascular testing that may be recommended
It is important to note that not every individual will receive the same tests or assessments — and it is not common for an individual to receive all the assessments below. Each patient's care is customized to meet their individual needs and risk-factors.
- Outpatient visit with detailed physical examination
- Electrocardiography (ECG or EKG)
- Echocardiography (two-dimensional, Doppler, and 3D imaging)
- Stress echocardiography
- Holter monitoring for continuous cardiac rhythm
- Cardiopulmonary exercise testing
- Cardiac magnetic resonance imaging (MRI)
- CT angiography
- Cardiac catheterization
- Blood tests for cardiovascular biomarkers (B-natriuretic peptide, etc.)
Organ-system surveillance testing that may be recommended
It is important to note that not every individual will receive the same tests or assessments — and it is not common for an individual to receive all the assessments below. Each patient's care is customized to meet their individual needs and risk-factors.
- Liver
- Comprehensive metabolic blood test
- Platelet count
- Serum gamma glutamyl transferase level
- Prothrombin time/INR
- Serum alpha fetoprotein level
- Serum cholesterol
- Abdominal ultrasound
- Liver elastography (ultrasound)
- Liver elastography (MRI)
- Liver imaging via CT or MRI
- Liver biopsy
- Kidney
- Serum BUN and creatinine levels
- Serum cystatin C level (biomarker of kidney function)
- Urinalysis
- Renal ultrasound with Doppler evaluation
- Renal nuclear scan
- Lymphatics
- Serum albumin and total protein
- Blood lymphocyte count
- Serum Immunoglobulin levels
- Fecal alpha-1-antitrypsin level
- T2 weighted MRI lymphatic imaging
- Dynamic lymphangiography/catheter-based lymphatic imaging
- Endocrine/Metabolic and nutritional
- Tanner staging for development
- Nutritional assessment including skinfold thickness
- Serum ionized calcium
- Vitamin D level
- Parathyroid hormone level
- Serum insulin-like growth hormone level
- Serum essential vitamin and mineral levels
- Bone densitometry/DXA scan imaging
- Bone age X-ray
- Hematological
- Complete blood count with cell differential
- Hemoglobin and hematocrit levels
- Serum iron level
- Total iron binding capacity level
- Serum ferritin level
- Plasma coagulation factor levels
- Lungs
- Chest X-ray
- Pulmonary function testing
- Neurological, psychological and behavioral
- Neurodevelopmental or cognitive testing
- Psychological testing
- Quality-of-life measures
- Brain MRI imaging
Follow-up care
CHOP has pioneered the notion of the importance of in-depth evaluation at critical time points in the life of the patient with a Fontan circulation. Our current surveillance strategy recommends the opportunity for a comprehensive evaluation at 10 years after Fontan operation to include select assessments above, as well as: