Tina Tinsley’s dream was to be a mother, and her wish was granted after years of trying. But because of cystic fibrosis, she couldn’t do basic tasks that most moms take for granted. She couldn’t go to the grocery store or give her children baths. When she left the house, she had to take an oxygen tank along with her.
It wasn’t always this way. Tinsley, now 38, was a physically active child, but cystic fibrosis changed all that as she got older.
A hereditary condition that develops during childhood, cystic fibrosis primarily affects the respiratory system, pancreas and sweat glands. The body produces excess mucus that clogs the bronchi, which are the main passageway into the lungs. This leads to breathing difficulties and infections.
Infertility and IVF
Cystic fibrosis also causes infertility. Tinsley, who lives in Staunton, Va., was told she’d never have children, but she wasn’t one to take no for an answer. She and her husband, Phillip, kept trying. After numerous procedures and two in vitro fertilization (IVF) attempts over eight years, they were successful, and twins Cole and Sara were born in 2009.
Her faith in God kept her going through the long and often-disappointing process, she says. The twins were in the NICU for many weeks after their birth. “UVA took excellent care of them and made sure they were coming home,” she says.
After the birth of the babies, her cystic fibrosis symptoms worsened. “My husband says it really took a toll on my body,” she says. “But even if I knew that, if I had been warned, I don’t know if I would’ve listened. I really wanted to have kids.”
Family History of Cystic Fibrosis
Things took a turn for the worse in October 2013, when Tinsley was admitted to UVA with a lung infection and put on a ventilator and feeding tube. “I nearly left here. I almost died,” she says. For Tinsley, that was a very real possibility. Her brother died of cystic fibrosis three years ago at the age of 39. She also has two cousins with the condition, one of whom died from it.
Antibiotics controlled her infection, and eventually she was strong enough to be put on the lung transplant waiting list. Still, she wasn’t ready to admit she needed a transplant. She thought she might still get better and needed the convincing of her doctor, Max Weder, MD. “He said I wasn’t going to live if I didn’t have the transplant,” Tinsley says. “He’s by far the best physician I’ve ever had. We make a good team. The whole transplant team is just phenomenal.”
Tinsley also got support from other members of the transplant team at UVA, including social worker Bill Potts and pre-transplant coordinator Heidi Flanagan, RN.
“Heidi knew how nervous I was, and she was so compassionate. She told me to look ahead a year to what my life was going to be like.”
Potts, she says, asked her what she wanted from the rest of her life. “I told him I just wanted to be a mama to my babies. He said, ‘Transplant can give you that.’”
Lung Transplant and Recovery
While Tinsley was in the hospital, Phillip, Tinsley’s husband of 18 years, would drive 40 miles from Staunton to Charlottesville to be with her and then drive home to be with their children.
Christine Lau, MD, performed Tinsley’s lung transplant, which lasted almost 10 hours. Tinsley was removed from the ventilator the first day after her surgery. “I was up sitting in a chair the next day and walking in the hallways the day after that.”
She stayed in the MICU (medical intensive care unit) for two weeks following the surgery and worked with a respiratory therapist, physical therapist and nutritionist to regain normal function. Tinsley also takes immunosuppressants, drugs that prevent her body from rejecting her new lungs. Transplant recipients take anti-rejection medications for the rest of their lives.
Weder says Tinsley’s case is a special one. It’s not often that patients go from being near death to walking out of the hospital several weeks later. “She is a unique case and serves as a great example of how everyone on our MICU and transplant teams work together in difficult transplant cases.”
Along the way, the Tinsley family received lots of help. People in their Staunton community raised funds to help cover some of their transplant medical expenses. Another group made sure the children had presents under the tree this past Christmas when neither parent had the time or resources to go shopping. The Tinsleys’ church community donated weeks of meals during her hospitalization. The Tinsleys also received a grant from a nonprofit that paid for one round of their IVF procedure.
Tinsley, whose motto is “Live to fight another day,” says she feels better now than she’s felt since she was a child. She can give her children those baths, she goes to the grocery store and the oxygen tank is gone. She hopes to share her story with local churches and maybe write a book someday. Her new goals also include running a marathon. “I know I can do it,” she says.