Heart Care for Life: Brian’s Congenital Heart Disease Journey
Feeling chilled to the bone while fishing in January is an endurable compromise for doing something you love. But when Brian Forth struggled to recover from the cold back in 2020, he began to wonder if something more serious may be the culprit.
Aging or something else?
An avid trail runner and rock climber, Brian also noticed that he couldn’t run or climb as well as he used to. He initially suspected these changes were part of aging.
“I did notice I was slowing down a little bit,” Brian says. “But I also was 50 and I wondered, was this just part of being older?”
After an appointment with a cardiologist in Olympia and a subsequent stress test in Seattle during the 2020 pandemic, Brian discovered that one of his heart valves was failing. Without treatment, it would permanently damage his heart.
Born with congenital heart disease (CHD), this wasn’t Brian’s first-time facing heart issues.
While CHD is one of the most common birth defects, Brian was born with a rare form of CHD called Tetralogy of Fallot. As a result, he underwent open heart surgery at Children’s Hospital Los Angeles 18 months after he was born to correct multiple defects in his heart caused by the condition.
A typical childhood
Growing up with a pediatric registered nurse as a mother, Brian’s parents encouraged him to play it safe when it came to contact sports (opting to play baseball over football) and reminded him to never miss an annual cardiac check-up. Otherwise, Brian says life was fairly typical thanks to the success of his procedure as a baby.
“I never really felt like my heart disease was a limiting thing to me. It was just part of who I was. I don’t remember being sick. I just remember being me.”
When Brian turned 18, he spent a year at Loyola Marymount University before moving from southern California to Spokane to attend Gonzaga University and play baseball. He recalls establishing care at Providence Sacred Heart Medical Center and going through a battery of tests in order to be cleared to play for the university.
Brian spent the next four years playing baseball for Gonzaga. After graduating and ending his baseball career in 1994, he relocated to western Washington where he took a teaching job in Seattle and later started a digital agency in Tacoma.
Searching for the world’s best care
Once Brian left Spokane, he also left behind his routine check-ups with his cardiologist at Providence Heart Institute.
“When I graduated, I was 24 and I was invincible,” says Brian.
He didn’t begin seeing a cardiologist again until years later when he was required to in order to receive a life insurance policy.
After that cardiologist retired, Brian received more in-depth testing under the care of a new cardiologist.
While Brian was asymptomatic for many years and seemed to be doing well in life, the tests revealed that decades of a leaking pulmonary valve had led to heart enlargement.
After several virtual consultations with doctors in Seattle and Spokane, it was evident that he needed surgery, and Brian didn’t want to wait until he became sicker.
“My wife said you’re going to get the best care in the world—we’ll go anywhere,” says Brian.
“I was considering places like Mayo Clinic, Johns Hopkins, etc. But I kept being referred to Providence Heart Institute and Dr. Jeremy Nicolarsen because he is the best at what he does. A lot of that had to do with him being a congenital heart disease cardiologist and his experience with Tetralogy of Fallot, the heart defect that I had.”
"After talking to everyone, it was clear that the best care in the world was in Spokane, Washington, where I was already talking to Providence doctors.”
A team approach
Together, Brian and Dr. Nicolarsen made the decision to do the surgery as soon as possible.
“It was a breath of fresh air,” Brian recalls. “The entire Providence team was so reassuring. It felt like they were listening and what mattered to me mattered to them.”
Brian remembers the welcoming feeling of walking back into the same hospital where he was treated earlier in life, and meeting Dr. Neil Worrall, his congenital heart surgeon.
“Dr. Worrall exudes credibility and can-do confidence,” says Brian. “I felt like I was in the presence of a super star meeting him the first time.”
Brian elaborates to say the “entire process was seamless; the Providence team was just fantastic from beginning to end.”
Care for life: expanding congenital care for a growing adult patient population
At Providence Heart Institute and Providence Sacred Heart Children’s Hospital, the Providence Adult and Teen Congenital Heart Program (PATCH) was developed for patients like Brian to create a seamless transition from pediatric to adult care.
Considering himself fortunate, Brian says that not many people have lived as long as him with the surgery he had as a child. “Seeing a cardiologist that understands pediatrics and understood what would have happened to me at that point in time is key.”
“Patients like Brian,” says Dr. Worrall, “with complex reoperative situations are generally better off when they’re in a program and with a surgeon who’s done this frequently before.”
“Decades ago it was not common for patients with heart defects to survive to adulthood,” says Dr. Nicolarsen. “Now more than 90% of patients make it to adulthood. There’s a new need for adult congenital heart patients to be cared for in specialized centers. These centers are team-based, multidisciplinary care centers. Our program is one of the nationally accredited programs and we were one of the first to comprehensively care for these patients.”
"We can take care of patients from newborn diagnosis through surgery and infancy through another possible surgery as they get older—and continue taking care of them through their teenage and adult years because of the symbiosis between our pediatric and our adult congenital program,” says Dr. Worrall.
Living with heart
More than a year after his successful open-heart surgery in May of 2021, Brian is back to life as usual, only better.
“I feel like I’ve gained years back on my life,” says Brian. “I’m still very active and doing all the things I love to do. The reason I’m able to enjoy life like this is because I got the best care in the world. The thing I am most grateful for is the entire staff at Providence.”
Dr. Nicolarsen offers a final encouragement for anyone who was born with a congenital heart defect and had a surgery or some type of intervention as a child. “Even if you’re feeling well, it’s really important that you connect with us so that you receive the best heart care from a team of trusted experts.”
From heart conditions diagnosed in-utero to heart transplants or cardiac rehabilitation, doctors at Spokane Heart Institute and Providence Sacred Children’s Hospital treat a full range of cardiovascular disease. For more information visit providence.org/spokaneheart