BY ALLISON GRIFFIN MONTGOMERY ADVERTISER 07/05/2014 2:38 PM 07/05/2014 2:38 PM
Coleman Drew is making up for lost time.
The 15-year-old is sporting a nice summer tan, thanks to time spent swimming at the river recently. Like a lot of teens, his friends are keeping him busy, running around and hanging out. His mom and dad, like most parents of teen boys, try to keep an eye on him, but Coleman is mature for his age, so they feel pretty safe in letting him go.
Behind the braces and cool sunglasses, there is little evidence that just three months ago Coleman was lying in a hospital bed in Texas, waiting for the double lung transplant that would save his life.
Coleman was just 18 months old when he was diagnosed with cystic fibrosis (CF), a life-threatening genetic disease that causes a buildup of mucus throughout the body. The respiratory and digestive systems are particularly vulnerable.
The Montgomery Advertiser first profiled Coleman in 2003, when he was just 4 years old. Back then, his mom, Alice Drew, and dad, Curtis Drew, were hyper focused on helping him cope with his disease — and constant routines of breathing treatments, enzymes and medications. The daily care he required was emotionally draining, to say nothing of the innumerable hospital stays over the years, sometimes a month at a time.
“A lot of people casually say, ‘it’s a miracle,’ ” Curtis Drew said. “But I turn around and say, it really is a miracle.”
For the Drews, those are not just empty words.
There are varying degrees of severity of CF; some patients have it only in their sinuses, or in their pancreas, or only in the lungs. Coleman’s is the most severe form, and he has it in all those tissues.
He was on breathing treatments four times a day, and on oxygen 24 hours a day. He had to wear his “vest” three times a day — the vest is a garment that inflates and deflates, applying pressure to the chest wall to loosen and thin mucus and to move it toward the larger airways. That way, it can be cleared by coughing or suctioning.
For most of his life, Coleman’s CF has been manageable, but extremely painful.
“I have had to see this child in more pain than any mother should have to experience,” Alice Drew said.
Coleman nods. “My friends, when they’re messing with me or whatever, it’s like, when I say it hurts, it hurts.”
Despite his disease, he’s always been an energetic kid, his parents say, so much so that his pediatrician didn’t even want to test him for CF when he was a toddler.
But in the past year, the CF became more difficult to manage.
Like many patients who need constant medical treatment, Coleman had a port placed under his skin to cause less wear and tear on his veins. He developed a yeast growth around the port, “and it almost killed him,” his mother said.
“That was bad,” Coleman said. “I didn’t know if I was going to make it. I’ve had several people tell me, they didn’t know if I was going to make it.”
He’d been treated until then by a team of doctors in Atlanta, but when he started to go downhill, Coleman and his mom flew to Texas Children’s Hospital on a medical jet.
He was evaluated for a lung transplant and placed on a waiting list. The process involved the whole family; Curtis, Alice and Coleman were each evaluated by a psychiatrist and had to prove that there was a support system in place among extended family and friends.
“You have to show that you’re really going to take care of yourself,” Coleman said, “because if you don’t, they’re wasting lungs.”
That’s why it’s almost a competition for organs, Alice Drew said. And Coleman had to be, in most other respects, pretty healthy, with no other organ or tissue diseases.
Then, the family says, God’s hand really began to appear.
While his dad stayed in Montgomery to work, Coleman and his mom moved to Houston in January to be close to the hospital when donor lungs became available; in March, they did.
Poor weather delayed the arrival of the organs, which created tremendous anxiety. But the family saw it as a blessing — it allowed time for Curtis Drew and other family members to arrive in Houston in time for the transplant.
The surgery was 12 hours; Coleman was extubated at 12 hours after the lung surgery, his mother said. She wanted to see him take his first breath, that first gasp for oxygen.
“I watched them extubate him. It was really kind of like giving birth again.”
Coleman has set benchmarks in his recovery, his mother said. He had the transplant March 16; they were cleared to return home this month, barely three months after surgery.
His transplanted lungs do not have CF, but Coleman still has the CF in his sinuses and pancreas. In fact, he’s due for yet another nasal surgery in the next month or so in Atlanta.
He developed CF-related diabetes, which is common in such patients. And his immune system remains suppressed, so he can’t be around anyone who’s sick; if he goes to the hospital, he’ll wear a mask. And he can’t be around smokers.
Still, they are grateful. “This is a bump in the road compared to watching him struggle just to walk, or do anything,” Curtis Drew said.
There are no more machines and no more feeding tubes, and he’s put on about 40 needed pounds in the past several months, his mother said.
They will go back to Houston every three months for a week at the time to monitor his condition, and he will continue to take anti-rejection medication.
But they remain cautious, because they have to.
“Don’t let people think that the battle has been won,” Alice Drew said. “We’re still fighting for him.”
Though Coleman is covered by insurance, the expenses associated with his care and the transplant have been tremendous.
“As soon as people start talking transplant, no matter what kind it is, they need to start having fundraisers,” Alice Drew said.
She gave up her career in the insurance industry in 2008 to care for him full time. She and Curtis Drew are divorced, but they work together as a team when it comes to Coleman’s care. Curtis Drew is a retired paramedic and is now a contractor as well as a paramedic instructor at H. Councill Trenholm State Technical College.
He has helped Alice Drew with her expenses and bills both in Montgomery and while she and Coleman were in Texas; their apartment near the Houston hospital alone was nearly $3,000 a month, to say nothing of the living expenses here and there, and the cost of prescriptions not covered by insurance.
And in the midst of Coleman’s worst struggles, Alice Drew was diagnosed with breast cancer and has since had a bilateral mastectomy. She finished her last reconstruction surgery at the end of September.
A number of friends, family and others in Montgomery have committed to having fundraisers and helping the family, an outpouring of support for which they are deeply grateful. Brad Gill is a close friend of both Drews and has watched Coleman grow into the young man he is today.
Gill is also the owner of Rock Bottom American Pub and held a fundraiser at the restaurant.
He knew back in the spring that he wanted to do something to help the family. He is thoughtful when talking about Coleman.
“He’s a strong kid,” Gill said. “To see him go through everything that he’s gone through, to see somebody who wants to go and do so much. He wants to be normal. He doesn’t want to be treated any different from any normal 15-year-old.”
Liz Wuokko, a friend of Alice Drew’s for 18 years, agrees that Coleman is strong, as well as mature.
“He’s so caring, and so wise beyond his years because he’s been through so much,” Wuokko said. “He’s just a sweet, Christian young man, and he’s tough as nails. He takes what’s been given to him, and he just keeps pushing forward.”
Read more here: http://www.kansascity.com/living/health-fitness/article675645.html#storylink=cpy
Transplant gives hope to cystic fibrosis patient | The Kansas City Star.