Tuesday, Sep 20, 2016
No one would blame Tyler West if he chose to get mad and frustrated.
West, a 28-year-old Rome native, has spent a lifetime in and out of hospitals trying to find an elusive answer to a simple question – why does he get sick.
While searching for the answer, West has carved his own path. Instead of focusing on his problems and letting them weigh him down, West chooses to help others by raising funds to research a disease in the hope that other people won’t have to face the same issues he has.
A Long Journey
For West, the medical journey began before he was even two months old when Harbin Clinic General Surgeon Dr. Paul Brock, who was new to the area in 1988, operated on him for a severe hernia.
Since then, West has been in and out of hospitals and tested for multiple diseases and conditions. He’s seen 30 doctors across five states and been placed under anesthesia at least 35 times.
He’s had his rectum and colon removed and in 2014 battled through nine different hospital stays. A severe gastrointestinal bleed prompted one of those stays. However, Tyler worried about someone else.
The stay interrupted his preparations in helping put together an Easter egg hunt for pediatric patients at Northside Hospital in Atlanta, and he was worried those kids wouldn’t have their egg hunt.
“I have been working with Tyler and his family since he was barely a month old,” Dr. Brock says. “Tyler has been unrelenting despite several surgeries and medical obstacles. I consider myself lucky to be part of the team caring for him.”
Searching for an Answer
As West continued to visits doctors and rack up hospital stays, his family and doctors continued searching to see if a related disease could be causing his problems. One potential candidate, which seemed to keep coming up, was cystic fibrosis.
Cystic fibrosis is a progressive, life-threatening genetic disease that primarily affects the lungs and the gastrointestinal system.
There are over 1,800 mutations of cystic fibrosis, and the gene mutation, which causes it, wasn’t identified until 1989. All newborns are now screened for cystic fibrosis. However, West was born in 1988.
West got tested for cystic fibrosis on multiple occasions, but test results came back as inconclusive. Some tests showed a positive result, while others came back negative.
“My lungs are not typical lungs for a CF patient, but it has attacked my gastrointestinal system really badly and now my pancreas is having difficulties,” West says, “It's a disease that attacks multiple organs.”
At 21 years old, Tyler became a patient of Dr. George Goldin, a gastroenterologist at Harbin Clinic. Dr. Goldin diagnosed West with cystic fibrosis, allowing him to participate in clinical trials. Dr. Goldin also prescribed the medication Creon, a digestive enzyme that helps individuals digest food.
He also helped Tyler get accepted to a genetic testing program at Johns Hopkins DNA Diagnostic Center to identify and analyze Tyler’s unique mutation. Tyler’s genetic mutation of cystic fibrosis is so rare that he may be the only person in the world with it.
“Tyler really is indefatigable in his personality and his battle with this disease,” Dr. Goldin says. “He really inspires everyone.”
A Caring Crew
Throughout his medical journey, the Wests have relied on a team of Harbin physicians.
Whenever West was rushed to the emergency room, Dr. Goldin would call ahead to prepare the staff for his arrival. West’s medical care team includes Harbin physicians Dr. Amar Singh, Dr. Gary Voccio, Dr. Barritt Gilbert and Dr. Ahed Mansoura.
“We stick with Harbin doctors because they really are a team dedicated to caring for Tyler,” Debbi West, Tyler’s mother, says. “We’ve seen doctors across the U.S. but we still choose to be with Harbin because we’re not just a number to them, they truly care about us.”
Inspiring the Community
Many Romans have heard about Tyler, and the West’s have used the story to help raise money for cystic fibrosis research and awareness.
Last year, more than 70 Romans helped raised more than $8,000 for the Big Peach Sizzler 10K Miles for Cystic Fibrosis race. The team name was Tyler and the Creon-ites, for the medicine the West’s credit with saving Tyler’s life and allowing his condition to improve.
At this year’s Big Peach Sizzler 10K, Tyler’s team was able to raise more than $5,000 to support Miles for Cystic Fibrosis. With over 140 supporters, Tyler and the Creon-ites was the largest team to participate in fundraising efforts for the race.
West’s work to help with cystic fibrosis also put him on the radar for the Miles for Cystic Fibrosis organization. The group recently honored him by naming him the 2016 recipient of the Miles for Cystic Fibrosis Inspiration Award.
“As soon as we met Tyler, we immediately decided he deserved to be the 10th recipient of the award,” Dr. Peter Scott, co-founder of Miles for Cystic Fibrosis, says. “We chose him, because he’s active in the community and in this organization and he truly inspires us.”
West continues to tirelessly battle the disease and works to make sure that others can learn about cystic fibrosis.
“My hope is that no other family has to walk this struggle alone,” Debbi West says. “Tyler never complains and he always looks out for others. I was chosen to be a mom to a real-life hero.”
In addition to his work in the CF community, Tyler also volunteers with his church, the Rome Little Theater, a local ostomy support group and he helps with Junior Varsity Basketball at Darlington.
In typical hero fashion, West hopes the struggles he’s gone through can help other people who may be facing similar issues.
“There are only around 30,000 people in the entire United States with cystic fibrosis. Because it is a rare disease, many people may have heard of it but don't truly understand it,” Tyler West says. “Our goal in sharing my story is to make people more aware of the effects of the disease and help them understand it.”