Lindsay Potter – Adult Congenital Heart Disease

Lindsay Potter, a UPMC employee, was born with several complex congenital heart defects. After her initial surgeries, she recovered well and felt normal for years. It wasn’t until 2019 that she began experiencing chest pain, shortness of breath, and edema, the retention of excess water within the tissues that causes swelling of the lower legs and abdomen.

Lindsay made an appointment at her local hospital for further recommendations. Given her complex heart condition, there was little that they knew regarding treatment for her concerns. After being hospitalized several times with no resolution to her symptoms, she decided to turn to the experts at UPMC for care. She made an appointment with Sunil Patel, MD, a pediatric cardiologist at UPMC Harrisburg, in December 2019.

“I knew that something was still wrong. It felt like I was in heart failure,” says Lindsay. “Seeing Dr. Patel gave me a sense of relief. He was very helpful.”

Dr. Patel accepted Lindsay’s case and ran several diagnostic tests to examine and monitor her condition.

“When Dr. Patel saw the test results, he asked me about the last time I had a cardiac catheterization,” explains Lindsay. “It had been a while, about 29 years. That’s when Dr. Patel told me that with my conditions, I should have a routine cardiac catheterization every five years.”

A cardiac catheterization is a minimally invasive procedure that allows the doctor to examine heart function by directly viewing the inside of the heart. The interventionalist inserts a thin, flexible tube through the patient’s vein and guides it through the blood vessel directly to the inside of the heart. This allows them to diagnose and often treat cardiac conditions during the procedure.

Traveling to Pittsburgh for Care

Dr. Patel collaborated with the specialists at UPMC Children’s Hospital of Pittsburgh’s world-renowned Heart Institute. He referred Lindsay to Bryan H. Goldstein, MD, director of the cardiac catheterization laboratory and interventional cardiology service at UPMC Children’s, for a cardiac catheterization.

“When Dr. Patel referred me to the Heart Institute in Pittsburgh, I was really excited,” says Lindsay. “I’m a huge Steeler’s fan and was looking forward to being in the city.”

Lindsay and her family arrived in Pittsburgh for her cardiac catheterization in November 2020.

“The entire team was so nice throughout our experience in Pittsburgh,” says Lindsay. “They even took my mom and husband to the cafeteria during my procedure and were always willing to help them.”

After her procedure, Dr. Goldstein confirmed that Lindsay will likely need a heart transplant in the future. He referred Lindsay to Arvind Hoskoppal, MD, MHS, an Adult Congenital Cardiology specialist, who is dual trained in pediatric cardiology. Dr. Hoskoppal is currently the director of the UPMC Adult Congenital Heart Disease Program at UPMC.

A Collaborative Approach to Care

Lindsay sees Dr. Hoskoppal yearly to monitor her condition and eventually evaluate her need for heart transplant. She also continues to attend appointments with Dr. Patel every six months as her primary cardiologist near her home in central Pa. Both physicians regularly communicate about Lindsay’s condition for complete collaboration after her appointments.

“I’ve had a great experience with both Dr. Patel and Dr. Hoskoppal,” explains Lindsay. “It’s reassuring to know that both doctors collaborate and discuss my condition. At my last appointment with Dr. Hoskoppal, I explained to him some of the symptoms I had recently been experiencing. Right after the appointment, he called Dr. Patel to let him know what was going on. It was nice to not have that responsibility fall on me as the patient.”

Resources for Traveling Patients

Lindsay has already learned a lot through her experience traveling from one location to another for care.

“Originally, I didn’t know about all of the accommodations that UPMC Children’s offers patients and families traveling to Pittsburgh,” says Lindsay. “I would encourage patients to research the different housing options and take advantage of those resources.”

UPMC Children’s provides a number of resources to patients staying in Pittsburgh for care. Short-term housing accommodations include:

  • The Ronald McDonald House
  • Family House

UPMC Children’s also provides special hotel rates and transportation services for traveling patients. To learn more about the accommodations that UPMC Children’s provides, click here.

Lindsay continues to prioritize her health and offers encouragement to those in similar circumstances.

“The staff at UPMC Children’s provided me with support resources, including congenital heart disease and transplant Facebook groups to join,” says Lindsay. “Take full advantage of these resources and always understand that you are not alone in this journey.”

Lindsay’s treatment and results may not be representative of similar cases.