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Joanna's story: how a lung transplant gave her a new lease on life
From the outside looking in, Joanna appeared like any other little girl – energetic and full of life! Sure, she and her twin were born prematurely at 27 weeks, but she was just fine otherwise.
"She weighed 1/2 pound when she was born," Jose recalled about his daughter. "She could fit in the palm of my hand."
Joanna was a healthy kid who hit all of her milestones, that is until she turned 2. Everything changed for Jose's family when Joanna began to show flu-like symptoms. She'd contracted the H1N1 virus and was being treated at a hospital in the family's hometown of Mission, Texas.
At first the doctors could not figure out what was wrong with Joanna. "We were in and out of the hospital for months," Jose said. Even with the numerous visits, she did not get better. "Joanna would turn purple because she could not breathe well and was now dependent on full blast oxygen.”
Eventually, she was referred to Texas Children's Hospital where, within two weeks, she finally received a diagnosis.
Jose and the family learned Joanna had BOS (Bronchiolitis Obliterans Syndrome) and immediately began treatment.
"Joanna was placed on a lot of meds and was still dependent on oxygen," Jose explained.
Every six months, the family would make the grueling 12-hour round trip travel to Texas Children's Hospital for follow-up care and Joanna was still not showing signs of recovery. Instead, she consumed as many as six tanks of oxygen per day just to help her breathe.
Her quality of life was also very low. Joanna could not do very much. "If she wanted to ride a bike or play, someone had to be there, next to her the entire time, holding the oxygen tank. At home, she had a 50-foot oxygen cord tethering her everywhere. Because of this, she was very behind at school. She only received about two to three hours per week of homeschool time," Jose said.
As a parent, Jose was heartbroken for his daughter and so were her doctors.
Like any surgery, needing to undergo a lung transplant can be a scary thought for any family, but it was Joanna's only shot at a better quality of life.
In May 2017, Joanna was placed on both the adult and pediatric lung transplant lists and the wait begun. Luckily for Jose, Joanna and their family, they did not have to wait long. Joanna received her transplant and a second chance at life on July 13, 2017.
"Everything turned out wonderfully, she was only in the hospital for two weeks after the transplant and they even called her a super star because she tolerated everything so well and had an amazing recovery,” Jose said.
Joanna recently had her two-year post-transplant follow up appointment and she’s doing amazingly well. She’s back in school full time and doesn’t need supplemental oxygen at all.
Jose remains thankful for all the assistance Joanna received from Texas Children’s during this extremely challenging time.
When asked about his favorite ability Joanna now has post-transplant that she couldn’t do before, he said, "I love everything this transplant did for her. Seeing her go outside, riding her bike without her oxygen tank, it’s amazing. It really is a whole new life and I’m just grateful for the team – for Texas Children’s Hospital, for Dr. Ruiz. He was truly an angel to my daughter."