Not that he needs a reminder of what to be thankful for, but Shawn Cosgrove receives one with every breath or heartbeat.
Cosgrove, 37, returned home full-time only a couple weeks ago after spending most of the previous four months at Barnes-Jewish Hospital in St. Louis. He would come home on some weekends, but for the most part he was at the hospital so doctors could monitor his recovery from a heart and double-lung transplant.
Such an extensive procedure was necessary after a lifetime of medical issues began to overwhelm that trio of Shawn's organs. And, as one might think, it's a rare procedure.
Dr. Varun Puri, a cardiothoracic surgeon at Barnes-Jewish whose work includes lung transplants, said Cosgrove's surgery is a type usually seen less than a 100 times a year in the United States. Of the hospitals that do perform such a transplant – Barnes-Jewish is the only one in Missouri that does lung transplants – they do “maybe one or more,” Puri said.
After an initial bout of pneumonia, recovery has been smooth with no big signs of rejection, Shawn and his wife, Tami, say. So soon out of the hospital, Shawn hasn't yet returned to work, but more than anything he's looking forward to enjoying normal activities with his and Tami's three children, something he couldn't do for years because of severe breathing issues.
“I feel pretty normal; work out every day,” Shawn said.
'The way God made me'
If anything, it's a new normal for Shawn, who had heart and/or breathing issues for as long as he could remember.
He was born with a congenital heart condition in which his arteries were crossed. That required open heart surgery at Children's Mercy Hospital when he was 11 months old, but afterwards only one side of the heart functioned and he was left with an uneven chest cavity. A strenuous sport was basically out of the question while growing up – he could never pass a physical.
“During my whole childhood I couldn't participate in a lot of activities,” he said. “I just thought I had asthma. I did baseball, riding bikes – the normal kids stuff.
Some of the drugs Shawn had to take perhaps stunted his growth, but he didn't mind. When a doctor offered some hormone shots to boost growth and Shawn's mom let the 7-year-old decide, he turned them down.
“No, I like the way God made me,” he recalled saying.
Fast forward to 2009. A year earlier, a house fire had forced Shawn to move from Odessa, where he graduated from high school in 1998, to a friend's house in Sugar Creek. After a Fourth of July celebration, poor breathing kept him from sleeping, and he went in an ambulance to St. Mary's Hospital in Blue Springs.
It wasn't just asthma, but now chronic obstructive pulmonary disease (COPD), caused by years of his lungs overcompensating for his heart, which constantly made breathing difficult. Only a transplant could fix that, doctors told him.
Shawn met Tami in 2012 thanks in part to social media, though they had actually met as young children.
“Our families were friends when we were little, and I got curious after seeing a childhood picture,” Tami said, and after looking him up she and Shawn realized they had copies of the same Christmas photo.
“We started talking and then seeing each other; then he told me about his health issues,” she said.
At the time, Shawn hadn't gotten himself on the transplant list. That happened in January 2013. But the wait for a transplant lasted nearly 4 1/2 years. During that time he went on a ventilator five more times (the first time happened in 2012) and had multiple stays in the ICU at KU Medical Center – one stay lasting 68 days.
“I'll never forget how scary each and every time was,” Tami said.
Shawn especially credits Dr. Steven Simpson for his help in the ICU.
“He's one of the main reasons I'm living today,” Shawn said.
At home, he eventually needed a ventilator and a mechanical chair lift on the stairs because of his poor breathing.
On July 1, hooked up to oxygen, Shawn shared a father-daughter dance during their daughter's sweet 16 birthday party. The next evening, Barnes-Jewish called with news of a transplant match.
“They said we might have a donor, but they didn't know if the lungs would fit,” Tami said.
With another call, the Cosgroves received the go-ahead. After rushing around to get packed, they hurried over to St. Louis a bit too much for one state trooper's liking on Interstate 70, but he let them off with a warning when Tami explained the circumstances. The surgery was on July 3.
“It's a complex undertaking that requires many teams to be involved,” Puri said, noting that heart and lung transplant surgeons are involved, along with the transplant team that includes another surgeon. A recipient's blood type and antibodies all must be taken into consideration, to avoid rejection. And as opposed to something like a liver or kidney that can fit into a body easier, the heart and lungs go into a finite chest cavity.
“We have to make sure the candidates are appropriately selected,” Puri said. “A transplant team goes out and evaluates the donor organs on site, then relays back.”
Tami said she was told Shawn's tri-organ surgery might take up to 12 hours. It was done in seven. When he woke up, Shawn said, he wondered if the surgery had worked, given that he was still hooked up to oxygen. Many times, they said, a lung transplant recipient has a hard time programming the brain to breathe without the struggles of before.
“Physically I felt like a different person than before,” Shawn said. “I was still on a lot of medication, and was lying in a chair for a couple days. When they took (the oxygen) out, that first breath was pure heaven, like God was breathing through me.”
The donor was a 35-year-old man, they said. In time, they might learn more about that person. Perhaps it might explain the strange craving for olives that Shawn picked up, they said jokingly.
“I'm going to write my donor family,” Shawn said, knowing he would have to be anonymous at first. “I just don't know what I'm going to say.”
More donors needed
Part of the reason the Cosgroves were willing to tell his story is to highlight the need for more organ donors.
According to the Organ Procurement and Transplantation Network, there are more almost 116,600 people in the United States needing a life-saving organ transplant. A new person is added about every 10 minutes, and on average 20 people die each day waiting for a transplant.
While the year-end number of waiting patients has risen from more than 80,000 in 2003 to about 120,000 in 2015, the number of transplants performed has stayed roughly between 20,000 and 30,000 and the number of donors has remained below 20,000.
During his stay at Barnes-Jewish, Shawn met became friends with several other lung recipients. They still converse online. Even now, there are two other younger patients there awaiting double-lung transplants, Tami said.
“People only have so much life,” she said. “If there's more donors, there would be less people dying.”
The problem could well be lack of awareness rather than lack of willingness, she said.
“They don't realize how many people are dying,” Tami said. “I wasn't an organ donor until I met Shawn.”
This year, as of Tuesday, there have been 28,748 transplants performed with 13,517 donors.
Shawn, himself a listed organ donor, acknowledged that as his number of visits to Barnes-Jewish – necessary to get checked up and remain on the donor list – increased, he thought the chance of getting a match in time lessened.
“I was about 95 percent (thinking it wouldn't happen),” he said. “Not to be a Debbie Downer; it's just realistic.”
Now, he's looking forward to spending plenty of normal time with his family, especially his 10-year-old daughter.
“He hasn't been able to have the type of relationship he wants,” Tami said. “It's hard for her to understand, and he couldn't do things with the kids like he wanted to.”
But thanks to another man's willingness to donate after life, Shawn can.
“Even if it's just one more day, one more week or one more year, it's worth it, it's one more time you get with that person, one more memory.”