GREENSBORO — You gotta figure Chris Blackburn loves his older sister.
She used to give him loads of grief. She’d poke him, call him names and get him on edge when she babysat him, washed his hair and said, “Look! Something’s wrong with you! Your hair is foaming!’’
But that was a long time ago, back when they were growing up in Pilot Mountain. Today, Ashley is 39; Chris is 30. And right now, Ashley just wants to stay alive.
She needs a double lung transplant because cystic fibrosis —– a chronic disease she’s had since she was born — has assaulted her body and left her in Pittsburgh barely able to breath.
She’s No. 1 on the transplant list at University of Pittsburgh Medical Center, the hospital that has done more lung transplants than any other hospital in the world.
But the operation will cost at least $600,000. Medicare will cover about half of that. The rest will come from her.
The questions ping-pong constantly in her head: Will she be well enough for a transplant? Will she have enough money for a transplant and the after-surgery medication? And really, will she survive?
“I don’t know if I want to go through with this,’’ she’s told her brother.
“It’s for the both of us,’’ he’s said. “You’re going through three months of hell to get seven years of mobility. Don’t think of it as a transplant. Think of it as a tune-up. It’ll make you better.’’
That’s what Chris likes to think. He knows a good pair of lungs will last between five to seven years. But really, even without the operation, he wonders if his sister can see another year, let alone another month.
So he worries, too. About her constant health problems. About being too sick or too weak for a transplant. About going into surgery and flat-lining right there on the operating table. He doesn’t like to talk about it.
So he loses himself in his work because he can control it. He’s doing something he loves.
He’s the chef of two restaurants: Emerywood Fine Foods in High Point and Lindley Park Filling Station in Greensboro. He serves up 170 meals a day and works 70 hours a week in a kitchen where his sweat-soaked T-shirt is a second skin.
His sister’s cystic fibrosis makes him feel helpless. But he wants to help. So he does what comes, naturally, what makes him feel at home.
Chris cooks.
This summer, Chris has cooked in a peculiar spot — the parking lot of Lindley Park Filling Station, the old gas station perched on one of Greensboro’s most notable corners, Walker and Elam avenues, near UNCG.
Chris has sold 250 pounds of barbecue and 55 pounds of fried fish. Meanwhile, Sarah Keith — his girlfriend, restaurant owner and boss — raised money alongside him by arranging an art show, a car wash and an auction.
Final tally of their two fundraising efforts? About $10,000.
Expect another fundraiser Oct. 24. It’ll be a block party with bands. And of course, Chris will cook. This time, it’ll be chili.
Chris says he hopes to raise another $8,000. But run the numbers.
An operation that’ll run between $600,000 to $800,000. An out-of-pocket expense of at least $300,000. The idea of selling chili and two beers — for $10 a pop — to help make up the difference.
Daunting.
“At least we didn’t give up,’’ Chris says. “We could be her only chance for survival. And really, if her brother feels he can’t do it, who else will?’’
Ashley is really Chris’ half sister. They have the same mother, different fathers. But Chris doesn’t see it that way.
“This is my sister,’’ Chris says. “We need to raise this money or she’s going to die.’’
These days, we hear much about the rising cost of health care.
As President Obama pushes hard for health care reform, he always mentions the stories he’s heard and the letters he’s received about how our health care system is broken and far too expensive.
But Obama’s plan scares Ashley. She worries about the bureaucracy of it all, of having someone on Capitol Hill decide what treatment she needs and thinking someone younger — with fewer medical problems — would get a new set of lungs before her.
She feels more like a pawn than a patient. Her cystic fibrosis has nearly bankrupted her. It’s also pummeled her spirit.
Three years ago, she and her 44-year-old husband Alan Tanner divorced so she could qualify for Medicare, and he could get a job without the fear of an employer seeing his wife as a health-benefits liability.
They still wear their wedding rings, and they talk several times a day. Yet they live 350 miles apart.
They originally had moved from Greensboro to Baltimore to be closer to the world-famous Johns Hopkins Hospital. Ashley hoped to get better medical care — and a potential transplant.
But four months ago, she moved near the University of Pittsburgh Medical Center because her doctors told her she could have a better chance of getting a transplant quicker.
Alan stayed in Baltimore because of his job. Ironically, Alan works for an insurance company in customer service, taking phone calls and talking about benefits.
He drives up every weekend to see her — at least a four-hour drive, carrying with him one of their three dogs, Sergeant or Fritz or Dancer. All for one day together.
“It’s too much, man, too much,’’ Alan says, his voice breaking. “What I try to tell people is that one of her medicines — her rejection medicines — can cost up to $5,000 to $6,000 a month.
“And with Christopher, with the past couple of events he’s held, I love him for it. Without it, I’d have nothing. And I’m not saying I’m not grateful, but the reality of it is one prescription would wipe that clean.’’
These days, Ashley talks to her brother sometimes as much as three times a day. But it’s only for a few minutes. That’s all she can take.
She tells him she loves him and thanks him and calls him “my little hero.’’ And sometimes, her old self come back. She pokes him and calls him names.
Just the classic back-and-forth of any brother and sister. And when that happens, Chris knows she’s OK.
At least for that day.
Contact Jeri Rowe at 373-7374 or jeri.rowe@news-record.com
Visit www.cota.org, the Web site for Children’s Organ Transplant Association.
Click on donations, search for COTA patient family and type in “Ashley Tanner.’’
Drop off a check made out to the Children’s Organ Transplant Association, with “Ashley Tanner’’ in the memo field at Lindley Filling Station in Greensboro or Emerywood Fine Foods in High Point.
Information: Chris Blackburn, blackburn190@hotmail.com
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States and 70,000 people worldwide.
A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
About 1,000 new cases of cystic fibrosis are diagnosed each year. The predicted median age of survival for a person with cystic fibrosis is more than 37 years.
Source: Cystic Fibrosis Foundation
Ashley Tanner: Her Life Of Waiting
I’m scared, very scared. I don’t know what’s going to happen to me. I have no control over this disease. Right now it is controlling me. CF (cystic fibrosis) not only affects your lungs, but it affects the pancreas, the liver, the heart, our digestive system. I’ve been on IV antibiotics nonstop since October of 2008. These are powerful drugs with side effects. I’ve lost a lot of my hearing and will have to get hearing aids. I just found out during my last hospitalization that I am diabetic, which is common in CF. Eventually most CF’ers will develop diabetes. The transplant is not a cure all. It replaces the diseased lungs. The rest of the medical problems still remain and there could be more because the anti-rejection medicines are hard on the body.
I pray daily that I’ll get that call. Not being able to breathe is the worst feeling in the world. It feels like you’re drowning or that you have a plastic bag placed over your head. I depend on oxygen 24/7 and so my CO2 (carbon dioxide) doesn’t get too high, at night I use a bi-pap machine, which involves having a mask over my face while sleeping. It draws the CO2 out of your body.
What’s it like waiting for a new set of lungs? It’s a nightmare. That is what it is. It’s a journey into the unknown.
Source: An e-mail from Ashley Tanner
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