BY MARIE F. ESTRADA/TIMES-HERALD, VALLEJO
Posted: 06/17/2013 01:03:57 AM PDT
For the first time in four years, 17-year-old Vallejo resident Justin Fowler can breathe clearly.
On Feb.16 Fowler received a double lung transplant at Lucille Packard Children’s Hospital in Palo Alto, and for the first time in years, he said he can finally make plans for both the weekend and his future.
His transplants came in the nick of time. In the days leading up to his surgery, Justin’s body was at a serious juncture. His lungs were shutting down, but he resisted a procedure that, while helping him, would have kicked him off the transplant list.
His grandmother said he fought for the new lungs, and months later Justin said he’s feeling better every day.
A huge fan of the Giants, and new fan of the Vallejo Admirals,
Fowler has plans to join the baseball team at Vallejo High School this fall as a junior — regardless of whether he has to sit on the bench sometimes.
“I might have to work on my hitting,” he said with a shy smile. “But hey, my defense is probably pretty good!”
Diagnosed with Cystic Fibrosis at age 5, the third generation Vallejo resident is no stranger to hospital rooms. In fact, in the last three years he has been home only 44 days, said his mom, Tina Fowler.
The disease is an inherited one that affects the lungs and digestive system. Because of it Fowler took 15 pills a day when he was younger and still takes enzyme pills before every meal so he can digest nutrients.
Before age 13, Fowler played little league as a
second baseman and right fielder as well as soccer. He also went periodically to the hospital for what his grandmother, Pat Thompson, called “tune-ups.”
“It was time consuming,” Thompson said. “He was a young kid trying to do little league and soccer and keep his life normal.”
Despite his Cystic Fibrosis and daily medications, Thompson said her grandson rarely dropped his upbeat attitude or humor.
“He couldn’t run because he can’t breathe, but he never complained,” she said.
After his 13th birthday Fowler became sicker. He spent his 14th, 15th, 16th and most recent, 17th birthday, in the hospital.
By Jan. 16 of this year Fowler was on the lung transplant list. A week later, on Jan. 24, they had a “dry run,” Tina Fowler said. Lungs came, Justin was prepared for surgery but the lungs could not be used because they had MRSA, a strain of the staph bacteria.
“His body was starting to shut down and give up,” Thompson said. “He was putting up a good fight and hardly ever complained about pain.”
Through it all, Thompson said both Robert and Tina Fowler were in and out of the hospital and suffered the commute to and from Palo Alto to be with their son and at work.
“In the meantime you’re doing all of this fighting and your child is dying,” Thompson said. “It’s a rollercoaster because there’s not a lot of help.”
Before the second set of lungs became available, doctors told Tina Fowler lungs were the only option.
“We knew, if we don’t get lungs, this is it,” she said. “They were pumping him with oxygen so much that it blew a hole in his lung and his face and neck began to swell.”
But Fowler fought the pain and resisted intubation, which would require a tube to be inserted into his lungs to remove fluid. If intubated, he would be sedated, lose his ability to talk and be removed from the transplant list.
“He didn’t want to die, he wanted to get lungs,” Tina Fowler said. “I knew there was nothing I could do to help him and it killed me, but we had a huge following on Facebook and [Feb. 14] I just posted ‘pray for lungs.'”
On Feb. 15, lungs were available, and again Fowler was prepared for surgery.
This time the lungs were okayed and the family waited for surgery to begin, but a delay frightened the family.
“We worried that the lungs couldn’t be used again,” Thompson said. “The doctors said he wouldn’t make it through the weekend without them.”
But with a vertical scar down the middle of his chest, Fowler was released from the hospital on May 18, and allowed to go home. And he still had his humor, Thompson said.
“For a while there was a small problem with his lungs and when he breathed he sounded like Darth Vader,” she said, alluding to the fact that after his ordeal, he still managed to be a normal 17-year-old.
Now, almost four months after the double lung transplant, Tina Fowler said the craziest part is dealing with normal teenage problems.
“Three months ago he got his permit and I still haven’t driven with him,” she said as Fowler crossed his arms over his chest and rolled his eyes. “Transplant, I can do. Driving with him, not so sure yet.”
So far, Fowler said, he has driven one hour. But he’s happy just for the opportunity to be out of his room and the hospital bed.
“It used to be tiring to leave the house, and my friends always wanted to go to the batting cages so I couldn’t go.” he said. “Now it kills me to be at home! For three days I did 5 rounds of 25 at the batting cages.”
The new lungs are more motivation he said.
“Before I didn’t want to do anything because I didn’t see the point,” Fowler said with a straight face. “I didn’t see the point of being stressed out in school and thinking of college and good jobs if I was going to die.”
Now he has the option to make long term plans, and he said he might consider a job as a sports announcer. But not for the Giants.
“I’m too invested,” he said.
And in his matching Giants hat and T-shirt, it was obvious.
Though he progresses on a daily basis, Fowler still takes many medications and is restricted to open air activities.
“I can’t go to the movies since it’s a confined space,” he said. But this weekend he will be in Discovery Bay with his uncle, enjoying the sun.
And mom does not mind letting go a little.
“At first It was hard since he needed so much care for so long,” she said with a look over to her son. “Now he’s got alarms on his phone for when he needs to take his medicine and he’s more mature about taking his pills so I’m not worried. He always says maybe he’s more mature because of the 39-year-old lungs.”
As the cost of hospital visits, CO-payments for medications, surgeries and other transplant related expenses have taken over much of their lives, in the hospital a social worker advised the family to get in touch with the Children’s Organ Transplant Association.
The national organization helps families fundraise in their community to cover the expenses so families do not have to turn down a transplant because of the cost.
“I was off work for family leave and because he’s a high risk patient the insurance bills exceed $1,000,” Tina Fowler said. “The commute to and from hospitals and home had two tolls and we were still trying to pay our home expenses.”
Through COTA family, friends and community members can donate online or at fundraiser the family will organize throughout the year.
At the end of the day, Fowler said he is most grateful for his lung donor.
And aside from the freedom, he said the best part of being home is that when he wakes up and thinks he is still at the hospital, he realizes he is not.
“I have a moment of ‘where am I?'” he said. “It feels incredible to know I’m home.”