Mallory Smith rolls her IV medication pole as she walks through the hallway at UPMC Presbyterian Hospital to get some exercise following major surgery.
“I’m taking like six IV medications throughout the day. So they all come through on these different pumps,” Smith said.
Smith is 24, tall and slender, with long blonde hair and she’s currently in recovery from a double lung transplant surgery.
Smith has cystic fibrosis, also known as CF.
“CF is a genetic, progressive disease that mainly affects the lungs. It causes mucus to build up in the lungs, which leads to infection and inflammation and scarring,” Smith said.
Eventually, patients with CF need new lungs altogether.
Jonathan D’Cunha, surgical director of lung transplantation at UPMC, said Smith’s case was especially tough because her lungs had been infected by a highly resistant bacteria called B. cepacia.
“Because of that, it really handcuffs you around the time of lung transplant because we have to ‘knock down’ the immune system in order to get the patients to be able to take the donor lungs and that sets up a very difficult balance between the host and the recipient,” said D’Cunha.
The complexity of that operation is the reason Smith ended up in Pittsburgh.
She’s a Los Angeles native who studied biology at Stanford University. For most of her life, she had been treated at either UCLA or Stanford’s hospitals.
But when it came time for the transplant, both programs turned her down, said Mallory’s mom, Diane Shader Smith.
“It was devastating to find out that Stanford and UCLA, both had taken care of Mallory for years, both knew her well personally, knew us well, and yet, because of this one bacteria, she was rendered not a good candidate,” said Shader Smith.
Both UCLA and Stanford declined to comment.
So, how come cases like Smith’s get turned down?
It boils down to outcomes: how long patients survive after a transplant and whether the transplanted organs themselves remain usable. Those metrics are tracked by the United Network for Organ Sharing, or UNOS, and regulated by the federal government.
Marie Budev, medical director of the lung transplant program at the Cleveland Clinic said, on one hand, the regulations can be a good thing.
“It creates an equal playing field for all of us, so that we’re playing by the rules, we’re allocating organs appropriately,” said Budev.
But if a center isn’t meeting benchmarks for these outcomes, they get put on probation.
“Besides impacting clinical revenue, it also costs a substantial amount of money for the transplant program to rehabilitate itself through the probation period," Budev said.
UPMC performs about 95 lung transplants each year, counting single, double and joint heart and lung operations. That volume gives them a little more wiggle room to tackle difficult cases like Smith’s without having too negative of an impact on their overall success rate.
"Approximately 30-40 percent of our cases are turned down everywhere. At UPMC, we pride ourselves historically on being one of those centers that give patients like Mallory hope,” said D’Cunha.
UPMC has consistently met UNOS standards for lung transplant outcomes, but the program has faced challenges. In 2015, UPMC was put on probation over how they were allocating lungs to patients. It went off probation last year.
D’Cunha said Smith’s transplant went really well, considering the difficulty of her case. But there’s another big obstacle coming up.
“Chronic rejection is the main problem for patients with lung transplant. It’s what limits their long-term outcome,” said D’Cunha.
A patient's immune system will often attack transplanted organs.
Smith, along with her friends and family, started a campaign called #Lunges4Lungs to raise money and awareness for organ rejection research.
It’s similar to the ALS Ice Bucket Challenge: people post videos of themselves doing lunges on social media and challenge friends. So far, it’s raised almost $70,000.