Decatur, Ala. | Monday, May 20, 2013
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Rocky without the gloves
Hartselle man battles for life after double lung transplant
By Lucy Berry
The Decatur Daily

Gary Cosby Jr./The Decatur Daily
Rocky and Tara Gillespie wear Team Rocky shirts supporting his battle against cystic fibrosis. Doctors never expected the 38-year-old Gillespie to live past age 7.

HARTSELLE — Wearing a red-hooded sweatshirt with the words “Keepers of the faith” sprawled across his back and arms, Rocky Gillespie trod the black pavement slowly Friday morning, taking each step with patience and gratitude.

The 38-year-old Hartselle resident, with a chocolate doughnut and soft drink in hand, apologized for being a few minutes late for the interview and acknowledged an important milestone he had reached that morning.

“This is one of the first times I’ve showered and got ready by myself in almost a year,” he said.

A day free of medical complications, dialysis treatments and debilitating pain is precious to Gillespie, who has endured a lifelong battle against cystic fibrosis.

After each birthday Gillespie celebrated as a child, doctors cautiously increased his life expectancy, never believing he would survive past age 7.

Gillespie, who was forced to leave school for two weeks at a time because of his condition, found refuge at Children’s Hospital of Birmingham, where he formed friendships with other young people struggling with cystic fibrosis.

Although Gillespie has outlived all of his friends at the hospital, he continues his fight against the chronic disease, which impacts about 30,000 children and adults in the U.S. each year, according to the Cystic Fibrosis Foundation.

The foundation reports the average life expectancy for a cystic fibrosis patient is late 30s. Although cystic fibrosis is caused by a defective gene, wife Tara Gillespie said her husband is the first in his family to be diagnosed with the disease.

“Every day when I wake up, I wonder what’s going to happen — it’s always crazy,” Gillespie said. “What used to be unshakable is now very shaky ground. I don’t know what’s going to happen from the time I wake up to the time I go to bed.”

In 2006, with his pulmonary functions declining, a doctor told Gillespie that he should be on a lung transplant list because he had only six to eight months to live.

Gillespie, whose name was added to the list on Valentine’s Day the following year, kept his bags packed, waiting for a call from the UAB transplant team. The double-lung transplant came May 29.

Doctors told Gillespie he could live an additional two weeks or two years with the transplant. Gillespie said there was a “50/50 chance of getting through the operation. They guaranteed me nothing.”

Six years later, Tara said Gillespie’s survival has marveled the medical world.

“He teaches me that no matter what is thrown at you, you just have to dodge it and keep going,” said Tara, who will celebrate 10 years of marriage with Gillespie in June. “He inspires me every single day.”

Since the double-lung transplant in 2007, Gillespie has been diagnosed with kidney failure, forcing him to visit a dialysis clinic in Madison for several hours at a time three days a week.

In January, he underwent surgery at UAB Hospital after developing an infection in his back. Gillespie recently learned he has calciphylaxis, which causes calcium buildup and stops blood from flowing to his fingertips.

Gillespie, who was last employed at a local tattoo shop and for FYE in Decatur Mall, no longer works and receives disability payments because of his condition. Tara helps support the family as a closing secretary for the Brent King Law Firm in Decatur.

“Rocky has insurance, but we still have to pay 10 percent, and most bills are at least $200,000. So we pay what we can,” Tara said.

Earlier this month, dozens of friends and loved ones packed Java Jaay Cafe on Sixth Avenue Southeast, surprising Gillespie, Tara and his 16-year-old stepson, Blaine.

Memphis resident Nathan Reed worked with Java Jaay owners Bunk and Khristen Price to design and print a T-shirt with a “Team Rocky” logo on the front and a sacred lungs design — a play on the religious Sacred Heart symbol — on the back.

“We hugged and I started going through the Scripture with him,” Reed said. “I told him we saw the flag, we saw the rallying point, and we’re here to let you know you have an army behind you. Then we revealed the shirts.”

About $1,000 in proceeds from the T-shirts went directly to Gillespie and his family, while remaining funds will be donated to the Cystic Fibrosis Foundation in Gillespie’s name.

Tara said she used the money to purchase an adjustable bed for her husband, who has been forced to sleep in the family’s recliner because of back pain.

Choking back tears, Tara said the experience among friends at the coffee house was a rare moment of “tangible love.”

“So many times when Rocky and I have been to Birmingham, we feel so alone,” she said. “That was total confirmation that we are never alone.”

Gillespie said he prays to God for solace, but it is hard-core music that has inspired him to “push through” during tough times.

“I do pray, but as a physical, material, tangible thing, I reach out to this music because this music is what gives me hope,” he said. “It riles me up to a point to where I’m going to get up.”

Gillespie said he doesn’t know what his future holds, but he stands by his motto of “Never dying, always living,” coined from one of his favorite songs “Just Like Roaches” by Clenched Fist. The song lyrics read, “When death comes calling, we always resist / Dying never, living forever / Exist to survive, survive to exist / Forever breathing, there is no ending / Never die, always live.”

“I’m about to be 40, and I’m slowing down enough now to where I don’t really go out as much as I did, but people still send me texts every day all day telling me ‘Your story inspires me,’ ” he said. “It makes me feel good that if I have to go through what I’m going through that I can at least help somebody else in their walk.”

Lucy Berry can be reached at 256-340-2442 or lucy.berry@decaturdaily.com.

Want to help?

To donate to the Cystic Fibrosis Foundation in Rocky Gillespie’s name, visit www.cff.org/great_strides/NDALroaches.

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15 comments on this item

"The 38-year-old Hartselle resident, with a chocolate doughnut and soft drink in hand,...." Yeah.

I'm not sure what the above comment is supposed to be insinuating, but I'll keep my opinion of the person that posted it to myself.

I've met this guy before (several years ago when he was working), he was such a nice person, and I had no idea of what he was going through. It's great that he's made it so far with such a terrible disease!

I am very happy that Rocky has lived so long with CF and was able to have a successful lung transplant. My niece died of CF last year at the age of 14, due, in part to the fact that she was not a candidate for transplant. Therefore, I really hate to be a sourpuss about this, but people with renal failure on dialysis are NOT supposed to have doughnuts, soft drinks, hot dogs, and whatever else Rocky is eating in the photo. Rocky, you've survived a lot longer than many people with CF do, so please don't blow your good fortune by further damaging your kidneys! I hope you're able to have a transplant for that problem, too, but in the meantime please follow your diet!

@Teresa. Do you have a problem? Because I'm not sure what you're insinuating either. I know this person, he is a good man, stronger and tougher than almost anyone I have ever met. Given all he has been through, all he has overcome, I think he is entitled to eat whatever the hell he wants for breakfast.

Do you people see the look on his face in that picture? That is his reaction to how you feel about his dietary choices.

I second what Kenneth said. People that would come on here to criticize the diet of someone who has been through HELL in their life disgust me. He has every right to enjoy what he can while he can, and if his dietary habits were the only thing you were able to get out of that article you have problems.

Rocky is a relative of mine, and all I can say to you Teresa is LIVE LIKE YOU ARE DYING honey! He knows his time is limited and he LIVES everyday to the fullest!

This is the best front page article I have seen in quiet awhile! Great job Lucy!

Oh! And kudos Tara for standing up for your man! You are an inspiration as well! God bless you for your unconditional love! ;)

The power of life and death are in the tongue.......Rocky has lived this long because of a positive attitude! I feel sorry for people who have NOTHING positive to say and yet still feel the need to open their mouth. Great article.

Rocky, you are leaving a legacy for others on the power of God and being positive. May God continue to bless you.

@ Teresa....you need a heart transplant, dear, the kind that comes from God.

Maybe Rocky was celebrating a health achievement with a doughnut, Teresa .Like an important milestone he had reached that morning.

“This is one of the first times I’ve showered and got ready by myself in almost a year,”

Did not mean to be negative :( people really need to lighten up whether sick or not, we are not promised tomorrow!

Habit 5: Seek first to understand,Then to be understood-listen with your ears,your eyes,and heart,before you talk...we should all learn from our kids...

We LOVE AND SUPPORT you Rocky G and Tara!!!

This family needs understanding and support not ridicule ! Why do people judge others like this ? Judge not lest yea be judged ! Dang if he wants soft drink and doughnut give it to him we aren't talking crack and pitcher of beer for Pete Sake ! I get it is not good for him but it is not good for any of us.. There are worst things he could be doing...

Being critical is easy. It takes effort to be positive. If everyone would withhold judgement until they've walked a mile in other's shoes, this world would be a much different...a much better place. May God bless this family.

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