Take a Deep Breath: One Family’s Tumultuous Road to a Transplant

by Lafe Low, Red Cross communications volunteer  

Keith and Amy Deavitt are no strangers to fighting for their lives through illness. Amy herself is a breast cancer survivor, diagnosed at 32 in 2003. And she actually works for the American Cancer Society and has for 19 years. She currently serves as the Associate Director for Cancer Center Partnerships. 

Keith’s experience with sickness is arguably more frightening and intense. Over the last several years, he experienced worsening breathing troubles, required increasing levels of oxygen, and was informed he was going to need a double lung transplant. At one point, doctors even advised him to get his affairs in order and bid farewell to his family and friends.  

“It started in 2020, with some breathing difficulties,” says Keith. “I didn't feel right, saw the doctor, and they brushed it off as residual pneumonia.” His condition did not improve over the following 4 years, and eventually a deeper scan revealed scarring, which the doctors attributed to previous pneumonia. “The downward spiral continued. The breathing got intensely worse, and we continued to search for answers.”   In February of 2023, Keith was diagnosed with interstitial lung disease with pulmonary fibrosis, says Amy. “He had something called ground glass opacity. In normal lungs there is a lot of dark on a scan which is good- that shows strong lung capacity, but Keith’s scans were like storm clouds moving in and that dark space just kept closing in at every appointment.” For Keith, that meant increased difficulty breathing, a greater need for oxygen tanks and concentrators, and higher doses of steroids.  What had started in 2023 as a discussion of possibly needing a lung transplant 3-5 years down the road, turned imminent within 18 months.   

“I had a prescription for two concentrators, one for here and one for work. I wasn't working anymore, but they took that second one, connected it to the first, and added some tanks,” says Keith. “Amy was just keeping me alive here at home, so I wasn't laying in a hospital bed.” 

Moving around the house was a colossal task for Keith. “He would take 45 minutes going from the couch to the dining room,” says Amy. They both knew the time was drawing near. 

“The ambulance picked him up on September 19,” she says. “On September 20, they said you should take care of all your final documents. Boston had turned him down for the second time. Other places had said no as well since he was admitted. He was too deconditioned.”  

Keith said one of the primary reasons the doctors turned him down for a transplant was because of his body mass. “They typically don’t do transplants on bigger guys or bigger ladies,” he says. “So yeah, we planned my funeral. I tried to wrap my head around my last visits with my family; my friends.”  

However, the ICU staff at UVM hospital wasn’t ready to give up yet. “There are no words to describe how amazing [they are],” says Keith. “They fought so hard to keep me in a place where if some miracle could happen, I would be ready for it. And that miracle happened.” 

After being declined several times for a lung transplant, Keith’s pulmonologist continued looking for another hospital that would agree to perform the surgery. “She was looking for somebody to just say, ‘Yes, we’ll take a look.’ And she found a program at NYU in New York City,” he says. “They said if you can get him on his feet and give us a video of him walking, we'll consider getting him here and taking a look. I don't know how we did it, but what we did.” 

Amy remains amazed at the support of his ICU team at UVM. “They put a Superman cape on him. They asked him what his favorite song was, and he did the walk down the hall,” she says. “You can see him pulling every string of strength that he had to get that darn video done so they would say yes, and they did.” Keith notes the head of the transplant program at NYU had a last name of Angel. 

Then it came down to how to transport Keith from Vermont to New York City. “My oxygen needs were beyond an ambulance; beyond a helicopter,” he says. The team initially contracted a fixed wing medical flight team out of Boston, but that team ended up being grounded after the crew tested positive for Covid. That led to an urgent scramble to find another team, and they found one in North Carolina. That team was also grounded due to a hurricane at the time, but they said they would get there as soon as they could. There was a break in the weather that evening around 8PM and they took it arriving at UVM just before 11PM. 

“They left their family behind in the middle of that hurricane last September,” says Amy. “They left their family behind to come rescue mine.”  

Keith notes another coincidence that one of the flight crew had the last name of Lord. “A lot of stuff came together in 10 hours that day,” he says with relief.  

The day after flying Keith down to New York, Amy joined him. “Dr. Angel came up to me and said, ‘Are you ready for this? It’s going to be a fight, but we're going to get him there. He’s very sick, but we are going to do everything we can to get him his lungs,’ she says.  

Meanwhile, Keith’s condition continued to decline. “When I walked in, they were already putting him on nitrous,” says Amy. “100% oxygen wasn’t enough. Within 4 days he was on an ECMO (extracorporeal membrane oxygenation) machine, then he was on a ventilator. And the last words I said to him when they were putting him on the ventilator were, I promise you I'm not going to leave you on this thing. They're telling me you're going to have lungs in a couple days; baby just rest now and get ready.’” Keith had officially become the sickest man in the country according to his medical team. 

That was on a Saturday morning. The following Monday, they called him in for surgery. And that is when Keith started blood transfusions. “There was blood given to him in surgery. There was blood given to him after surgery,” says Amy.  

“We don't get to the end game if we don't have that,” says Keith. “I was in desperate need and that saved my life. Yes, I got new lungs, but the blood I got was just as important. Without that, I wouldn't make it to the lung part. You look at organ donors and how hugely amazing all that is. Blood is just as important.” 

Their experience inspired Keith and Amy to organize a blood drive in their community. “Doing this blood drive is one way we can do something here in the community to give back,” says Amy. Their blood drive is scheduled for Friday, September 26, at the Champlain Valley Exposition in Essex Junction, Vermont. To make an appointment to donate blood, visit RedCrossBlood.org. 

“It's a big deal. None of that other stuff happens without [blood],” says Keith. “Those accident victims, they get life flighted, and they are getting blood immediately. So having people understand how important that is, how amazing a gift that is; it's not just giving blood, it's life. You're giving somebody life.” 

Keith is now on anti-rejection medications, and is feeling quite well. He is even making plans for deer hunting season this year. Within the space of a year, Keith has gone from planning his own funeral and saying his goodbyes to planning to be out walking in the woods hunting.  

“Miracles do happen because of amazing people and the gifts they give. It is human beings being human,” Keith says. “We all have that power. We have to accept that and be willing to share it.” 

This year, two million people in the U.S. will be diagnosed with cancer – that’s roughly three people every minute. Red blood cells must be transfused within 42 days of donation – and platelets, the clotting component of your blood, must be used within five days. That’s why new donors are always needed. Although 62% of Americans are eligible to donate blood, only three percent do. To learn more about blood donation and how you can help patients in need, visit www.RedCrossBlood.org.