Outer Banks woman prepares for possibility of rare third double-lung transplant

Tricia Lawrenson. [Photo by Nate Lawrenson]

There was a time in 2008 that Nate Lawrenson prepared himself to drive home alone from Duke University Hospital, having lost both his wife and newborn daughter.

Both had been given just a 50 percent chance of survival – Tricia Lawrenson at the end stages of her lifelong battle cystic fibrosis and daughter Gwyneth, born 16 weeks premature and weighing little more than a pound.

Tricia, Gwyneth and Nate Lawrenson in 2008. [Lawrenson family photo]
Today, Nate and Tricia Lawrenson’s daughter is a 6th grader and their son Hunter in 8th grade at First Flight Middle School, and the couple has lived a life neither expected when they married 15 years ago. Tricia has doubled her original life expectancy, thanks to two double lung transplants – the first less than seven weeks after Gwyneth was born and the second in 2013.

At 37 years old, Tricia has conquered transplant-related cancer and a host of other health issues related to both cystic fibrosis and living with transplanted lungs. She’s always been willing to serve as a “guinea pig” and has been a passionate advocate for research about cystic fibrosis, a terminal, hereditary disease that affects the lungs and digestive system.

Now, with her donated lungs in rejection and her health beginning to fail, Tricia will soon be evaluated at Duke for an extremely rare third double-lung transplant. Only about a dozen people in the United States, and two dozen worldwide, have undergone the procedure.

It’s an option Tricia and her family never would have imagined seven years ago, when doctors told her to take care of her second set of transplanted lungs because they would be her last. Tricia has lived a full life since then, raising her two children and seeing them off to middle school, and spending each day trying to help others and appreciate the beauty of life for her donors.

“We’ve had a good life together and we’ve had more than we expected,” Nate said. “That’s what pushes her to stay alive, seeing the kids grow up.”

Faith, church, community

Faith is central in the Lawrenson family. Nate’s father has been pastor at Nags Head Church for 28 years and serves as the Nags Head police and fire chaplain. Nate, until a couple of years ago, was on staff at the church.

Their church family, and the Outer Banks community as a whole, have been constants in a life of uncertainty.

“We have something special here,” Tricia said. “To me, I’ve always just seen so much positive in our community and how we rally around each other.”

Faith is woven into every fiber of the Lawrensons’ lives.

“God created me to be a caregiver, it’s something I’m good at and brings me a sense of purpose,” Nate said. “God kind of put us together. Tricia grew up not knowing how long she’d live, if she’d ever be married or if she’d ever have kids. We’re a good match.”

Lawrenson family

For Tricia, she feels God’s purpose every day, driving her to help others — speaking about her disease to medical professionals, helping others facing life-threatening illness, raising money and being open to further research in helping find treatments for those with cystic fibrosis, which affects at least 30,000 Americans and 70,000 people worldwide.

And having faith means death won’t break the bond between Nate and Tricia.

“For us there’s a knowledge life extends beyond what we know here on earth, death is not the end for any of us. Death is not the end for Tricia, that in and of itself is very comforting,” Nate said.

Honoring her donors

Tricia lives each day to honor the donors of her two pairs of lungs, knowing that for her to live others died – and gave the ultimate gift.

“For me it is giving back, just using every day that God has given me to be an encouragement for others going through the same thing,” Tricia said. “I want to use every day to the best of my ability to honor those who gave life to me.”

She remembers life taking on new meaning after received her first set of lungs.

“I’ve always had a sense of duty, but it changed when I got first my set of lungs,” she said. “Leaving the hospital, the smell of honeysuckle, the flowers in bloom. It was like seeing everything for the first time. God has shown me purpose. Even when I’m home sick, when I’m not able to be out, I am trying to help others online.”

 

 
 
 
 
 
View this post on Instagram
 
 
 
 
 
 
 
 
 

 

This photo was taken May 2019, when I celebrated my sixth lung transplantiversary. It has been almost 12 years since my first transplant. ? To think about the last day of someone’s life being the beginning of my own is extremely humbling. The overwhelming feeling of gratitude and adoration for someone I have never met can not even be expressed in words. Unless you have been given this opportunity, the impact will never be fully understood. ? The day I received my lung transplant, impacted the lens in which I viewed life. I felt like I was not just breathing better for the first time; but smelling in a new light, seeing in a new light, hearing with a different perspective. Everything changed for me. I am here today because two people made the incredibly selfless decision to give of themselves to complete strangers. There is no greater love then to do this for others, allowing the gift of life to be possible. ? I hope every day that I’m alive, including the physically painful ones, the emotionally weary ones, the spiritually complex ones will show to others that I am thankful for this life & for my breath—because of the decision two persons who I have never met, made. This is what makes my life beautiful. ♻️? #DONATELIFE #65roses4pattysue

A post shared by Tricia Lawrenson (@donatelifeobx) on


Each year, Tricia writes to the families of her donors. She tells them about her life, and how grateful she is to be alive. There’s a chance the families may not accept her letters. But she knows one of the families has been receiving them each year.

“All of us in life have our struggles, they look very different from my own,” Tricia said. “I’m a strong believer in sharing your story, in sharing the things we’ve overcome, to help someone else.”

A helping hand

Since Tricia’s last transplant, the family’s health insurance has changed and the way the United Network for Organ Sharing allocates donor lungs has been revised.

There’s a lot of uncertainty about out-of-pocket costs for a third transplant. A medical trust fund for Tricia set up around the time of her first transplant has been godsend for the Lawrensons, allowing them to worry less about money and more about Tricia’s health.

Down to under $1,000 just a few weeks ago, the Outer Banks community and those who know and love the family have donated about $10,000 as Tricia faces the possibility of a third transplant.

Outer Banks resident Ashley Olvey, whose 8-year-old daughter Boston also lives with cystic fibrosis, is planning two fundraisers next month at Nags head Church to help boost Tricia’s medical fund. Details will be announced in coming days.

“I mean, going through all that she’s gone through and to still have unwavering faith and a positive attitude and the willingness to help others,” Olvey said of Tricia. “She’s paved the way. And what a role model for Boston.”

Out-of-pocket expenses just for travel and for Nate to be at Duke with Tricia run about $100 a day. And with Nate not working while he’s with her, there’s no money coming in.

“For both of the transplants we had to live in Durham for nine months,” Nate said. “The trust fund covers anything related to her medical needs, lodging and food for the caregiver.”

And once again, the Outer Banks community has always come through for the family.

“We’re incredibly grateful for all the people who have helped over the years,” Nate said. “Tricia’s the toughest person any of us know.”

.