A young woman waits for a new set of lungs. Cystic fibrosis is catching up with her.

‘TO BE SET FREE’

TINKER READY

STAFF WRITER

November 6, 1994

The News & Observer Raleigh, NC

A1

April 19, 1994. Ninth floor, Duke University Medical Center:

Shelby Parker sits in the lotus position in the middle of a
hospital bed, her slender arms resting on the pillow in her lap.
Cystic fibrosis is catching up with her.

At 23, she stands 5-foot-2 and weighs 70 pounds. impossibly thin,
her limbs so frail it’s a wonder she can lift a glass or walk to the
bathroom.

Just a year ago, Shelby was a full-time college student, but now
she spends day and night tethered to an oxygen tank. That hose runs
into her nose; another pumps intravenous antibiotics into her arm. An
infection almost killed her in January, and nothing short of a lung
transplant will save her.

But Shelby doesn’t want to talk about being sick.

“You have to meet my cats!” she says.

There is Annabelle, she explains, and Abraham, who is named for
President Lincoln.

“He just sort of reminds me of him,” she says.

A tiny, doe-eyed woman with a child’s voice, Shelby is in a
life-and-death showdown with her disease. Her lungs, scarred by
repeated infections, are failing. Ten years ago, death would have
loomed certain. There was no cure then, and there is none now.

But today, there is hope, albeit fragile hope. Just a few miles
from where Shelby waits, doctors at the University of North Carolina
at Chapel Hill are leading a national effort to cure cystic fibrosis
by repairing the faulty gene that causes the disease. But that
prospect is still far off.

For Shelby, the only real hope lies in the hands of the doctors
who have the power to remove her weak, scarred lungs and replace them
with a healthy set.

So she waits. It may be a year before someone else’s misfortune
becomes her salvation. She could very well die before an accident
leaves another patient brain-dead, a family makes a difficult
decision and a set of donor lungs becomes available to her.

Until then, she tries hard to live — not just to stay alive, but
to have a life. She divides her time between her father’s home in
Raleigh and Duke Hospital — a scary, unfamiliar place for most
people her age. Even so, Shelby seems oddly at home here.

Even during her relatively healthy periods — when she rode a
bike, climbed mountains and went to college — Shelby came to Duke
for regular “tune-ups.” Over the years, these sessions — in which
she spends several days hooked up to a bag of intravenous antibiotics
— have become more frequent.

“At first, it was once a year,” she says. “It got to be twice a
year. Now it’s three or four times a year.”

So, she knows the nurses on the ninth floor, which houses Duke’s
pulmonary wing. She knows her way around the mazelike building. And
she’s become an expert at dealing with doctors, nurses, technicians,
therapists, social workers and hospital aides.

When she thinks she needs a particular drug, she asks for it.
She’s always polite, but when she doesn’t like something, she says
so.

In January, a doctor toured some medical students through the
intensive care unit, and she heard him describe her as close to
death. She resented the comment and asked them to leave.

“You have to be that way, or they just walk all over you,” she
says.

###

When Shelby Parker invited me into her life, I didn’t rush in.

Shelby was waiting to be born again — this time, through a
transplant. With new lungs, she would breathe normally for the first
time. Without them, she would die young.

Shelby offered to let me wait with her, but part of me wanted to
pass. Her story was sad, yes, but it wasn’t news. In the Triangle’s
hospitals, there are hundreds of children and young people battling
chronic illnesses. And, personally, stories like this one require a
commitment of time and emotion I wasn’t sure I wanted to make.

At the same time, it’s not every day a medical writer gets to
follow someone into the darkest days of their disease — a disease
that remains fatal even as science moves toward a cure.

Shelby was living on that edge. So, when I walked into Duke
Hospital with a fresh notebook in my bag, I had to leave my
reservations behind.

###April 27, Ninth Floor, Duke University Medical Center:

“I’m starting to feel good,” Shelby says. “I haven’t felt good
for a long time.”

A week later, she’s still in the hospital, still cross-legged on
the bed. She searches for a way to describe how she feels today
compared with how she felt last week.

“I just come alive,” she says. “I revive.”

Today, she feels good enough to go to “the gym,” but not quite up
to walking there. So, a nurse helps Shelby into a wheelchair, loads
up her oxygen tank and they set off down the hall to the elevator.

Downstairs, in a room filled with dumbbells and exercise bikes,
physical therapist Fran Zabolitski waits by the treadmill.

“How are you feeling today?” she asks.

“Pretty good,” Shelby says in her squeaky little voice. She
sounds so much like a small child that pizza restaurants won’t take
her order over the phone.

She gets out of the wheelchair, reaches for the railing and plants
both Bass moccasins on the treadmill belt. She walks. Then, she
coughs.

The coughing sounds awful, but Zabolitski says it helps. Cystic
fibrosis destroys the lungs by allowing a thick, sticky mucus to
build up inside them, clogging the airways and causing infections.
The coughing strips it away.

The glue-like mucus is a breeding ground for infection, and these
patients have to work so hard to breathe through it that it
eventually destroys their lungs.

“Exercise makes people breathe harder, and it helps mobilize the
secretions,” Zabolitski says. “It helps keep their lung function
up.”

Meanwhile, Shelby keeps walking and coughing. A band holds her
straight, shoulder-length brown hair off her face, and her favorite
green T-shirt swings on her frail frame. Yesterday, she went for 25
minutes. She doesn’t go for quite as long today.

“I did real good,” she tells Zabolitski.

“You did… ” the physical therapist responds, “and you coughed
a lot today.”

But it’s hard. Shelby looks pale and drained. She knows she
should do this every day, but she confesses she’s not good about it.
She needs to build up her strength, but she doesn’t eat much. So,
she has little energy to spare.

“If I had to walk down to the gym, it would have worn me out,” she
says.

The focus may be on her lungs, but the biggest threat may come
from Shelby’s failure to gain weight. It’s not just that she has
little appetite. Cystic fibrosis affects her pancreas, as well as
her lungs, making it harder for Shelby to absorb nutrients and gain
weight.

At 70 pounds, she may lack the stamina needed to withstand the
stress of a transplant, if she survives until then.

So, after her January brush with death, Shelby agreed to begin
using a feeding tube. Now, every night, after she brushes her teeth,
she attaches a plastic tube to a special port implanted in her groin.
Then, a machine pumps liquid nutrition into her stomach while she
sleeps.

She hates it.

Earlier that day, she heard the doctors outside her door say,
“She’s as well as she’s going to get.” So, she goes home the next
day.

###

“Remind me to give you your book back,” Shelby said.

On an earlier visit to the hospital, I had loaned her a collection
of classic short stories called “Cat Tales.” Each one features a cat
in the story line and each entry is illustrated with a glossy, color
photo.

“Did you get a chance to read it?” I asked.

“No, but I looked at the pictures,” she said.

I felt foolish. I had forgotten Shelby is nearly blind.

In one of the many cascading difficulties of her illness, her
optic nerves were damaged by an antibiotic, chloromycetin, that she
took to treat lung infections. She has no head-on vision, a
condition called optic neuritis. She can see only out of the side of
her eyes. If she holds a documents up to her nose, she can make out
letters. She watches TV one foot away from the screen.

It’s hard to remember that Shelby can’t see. She always looks me
right in the eye.

### May 18, Park Drive, Raleigh:

Shelby shuffles into the living room, trailing a plastic hose
behind her. The extra-long tube on the oxygen tank lets her move
freely around her father’s house — from the spacious kitchen to the
dining room and into the well-appointed living room. If she wants to
go out, she can hook her hose up to a portable tank and take it with
her.

It’s a beautiful day in Raleigh’s Cameron Park neighborhood, and
the shopping center is just two blocks way.

But Shelby’s not interested. She’s been home from the hospital
for about three weeks now, and she’s not in a very good mood.

The tube feedings make her feel lousy, and the oxygen hose makes
her feel self-conscious. Walking around with a plastic tube running
up your nose is akin to leaving a hair salon with a really, really
bad haircut, she says.

“And I really haven’t had the energy… ” she says, “not that
I’m planning to stay cooped up in the house.”

For now, though, she does. Like yesterday and the day before,
Shelby will pass all day here, much of it alone.

With its antique furniture and Oriental rugs, the Parker home
feels formal, but comfortable at the same time. Still, Shelby sits
at the edge of the couch. She seems ill at ease.

Maybe it’s that she didn’t grow up here. She lived in Greensboro
with her mother, Winnifred “Winks” Parker, until she went off to
college. Only then did she make her summer home here with her dad,
John, and his second wife, Lynette Parker.

More likely, she’s simply uncomfortable with her new status as a
sick person. For years, Shelby could pretend she didn’t have a
life-threatening disease. Now, the illness she once ignored has
taken over her life.

Just last year, she was enrolled at Campbell University, majoring
in religion. She lived in the dorm. She went to parties. She
dated. She was even engaged for a while.

“I loved it,” she says. “I’m very independent.”

She wanted her life to stay that way, but her lungs did not
cooperate. Each day, Shelby had to work harder and harder to
breathe. It took all she had. She lost 20 pounds in 1992. When her
doctor, Wayne Samuelson, told her she needed to begin tube feeding to
gain weight, Shelby resisted.

“That was unacceptable to her,” Samuelson says. “It was tough for
her not to be like everyone else.”

Just before she was to start classes in January, she went to Duke
for a check-up.

“She asserts that she will be able to take excellent care of
herself,” Samuelson wrote in his notes. “I am somewhat pessimistic
about her prospects for being able to complete the semester.”

She never even started. Two weeks later, her family sent her not
to school in Buies Creek, but to the intensive care unit at Duke.
The infection in her lungs stole so much of her strength, they
doubted she would survive.

Somehow, Shelby made it back from the edge.

After that episode, she agreed to the feeding tube and to the
scary prospect of a lung transplant. Now she tries to cope with the
former while she waits for the latter.

Doctors often learn how to keep people like Shelby alive long
before they find a way to save them, but it’s not much of a life on a
feeding tube. She feels horribly nauseous. She vomits every
morning. She tries to eat, but has no appetite.

“Zero,” she said. Because she cannot keep the liquid food down,
though, she’s not gaining any weight and has no strength. Just
getting up, bathing and dressing wears her out.

She’s crabby. But she’s trying.

“It’s just a matter of adjusting,” she says. “You either do it or
you don’t. If you’re going to sit around and be depressed, it’s
going to affect your health.”

###

Using my personal computer, I can link up to a number of
electronic bulletin boards, where the like-minded discuss anything
from Hollywood gossip to feminism to cystic fibrosis.

On the “CF” board, writers debate the pros and cons of DNase, a
new drug that helps clear the lungs. Ger from Amsterdam asks for
advice on treatment for Joeri, her 6-year-old son. Paula sends rowdy
messages of inspiration from Texas, each word studded with
exclamation points.

Traci in Connecticut wants to hear from others who use the
“port-a-cath,” an implant for those who can’t handle more arm
punctures for IVs. Shelby has one.

One day this summer, I printed out a few messages, passed them on
to Shelby and asked if she wanted to send one to the group. After a
week or two, and a couple more printouts, she was ready.

“I would like to know if anyone has any suggestions or advice
about preparation for a lung transplant and what I should expect as
far as strength and pain,” she dictated. “If people have had
transplants, how did they deal with the waiting, the anxiousness and
the doubt?”

###June 7, Park Drive, Raleigh:

Shelby has always had a man in her life, according to her
stepmother. The first was Keith.

Just a mention of him brings a rare smile to Shelby’s face.

“He was the first boy I kissed, and I was the first girl he
kissed,” she says.

It’s about 4 p.m. and Shelby is just starting to feel normal. By
late afternoon, she feels well enough to sit in the living room and
chat about her “first love.”

For much of her life, Shelby tried to convince people that she
wasn’t really sick. Apparently, she did a pretty good job, keeping
up both her pace and her spirits.

As she reached her teens, though, she could no longer fool
herself.

“When you’re 10 years old, you don’t care,” she said. “By about
14, your body is changing and you suddenly care about what you look
like. I was skinnier than everyone.”

She knew why, but locked her fears inside until she befriended a
classmate and neighbor named Keith.

“He was the first person I ever talked to about it,” she said.
“To suddenly realize you have this disease — it’s incredible … He
was the first person I didn’t have to pretend with.”

Keith and Shelby have remained friends over the years, although he
now lives in New Hampshire. She has new friends who live nearby, but
in many ways she remains isolated.

Shelby still spends most of her time in the house. As always, her
hair looks neat and shiny. She’s swapped her hospital T-shirt for a
crisp polo shirt, but she still worries about her appearance.

She passes the day reading or watching television — Court TV and
the Arts & Entertainment network and two soap operas whose titles
echo her own drama: “General Hospital” and “One Life To Live.”

“I haven’t been bored, but I haven’t been doing anything,” she
says. “I’m wondering if I’m becoming boring.”

She finds the wait frustrating. She finds the overnight tube
feeding unbearable.

“I wake up all the time,” she says. “I don’t sleep soundly.”

In the morning, she gets up and vomits. The gray liquid that
flows into her stomach all night never settles quite right.

“I feel bad, and it takes me all day to feel better,” she says.
“I can’t really describe it. It’s just yuck.”

All this has left Shelby feeling rather ragged. One day, she
says, she was sitting with her father in the living room and burst
into tears, something she rarely does.

She was upset that her stepmother, Lynette, had gone outside to
smoke a cigarette. Most of her family members smoke, and usually it
doesn’t bother her. But that day, Shelby couldn’t help wondering why
someone would do damage to a good set of lungs.

Her tears upset her father, and they had a talk. When he began to
cry, Shelby apologized for getting so upset.

“I just can’t talk about sad feelings with my dad,” she says. “He
can’t handle it.”

She pauses for a minute and sighs.

“I get so tired of being strong.”

The next day, she’s back in the hospital.

###June 15, law office, John Parker, downtown Raleigh:

John Parker’s office is not unlike his home — traditional, but
comfortable. He works at a big, broad desk surrounded by diplomas,
degrees and artwork. A set of windows offers a view of the
Fayetteville Street Mall.

A true son of the South, John is a solid man who tends toward
seersucker, bow ties and little round glasses. He’s talkative
without being chatty. He’s friendly, but intense. He walks into the
room with none of the airs of a former judge.

Today, he seems troubled. After 23 years, he’s come face to face
with the cold fact that his sweet little girl could die.

From the day she was born — when it took seven minutes to get her
breathing — John Parker has struggled with the feelings unleashed by
his daughter’s illness. He’s a man who likes to be in control, a
trait he’s passed on to Shelby. Since the day she was born, though,
he’s felt powerless to help her.

John and Winks were former high school sweethearts who already had
given birth to a healthy baby when Shelby was born. The mother and
father were a rare combination. Although niether has cystic
fibrosis, each one unknowingly carried a gene that could cause it.
Shelby fell victim to the 1-in-4 chance that they would produce a
child with the disease, the most common genetic illness in the United
States.

Baby Shelby was small and sickly, and she had constant diarrhea.
She spent much of her infancy in the hospital.

“I would get sick — physically ill and throw up — when I would
go to visit her,” John says. “I would cry and I was not much help to
Winks at that time, I’m afraid to say.”

Shelby survived, but the marriage didn’t. Winks moved to
Greensboro with her children, and John became a long-distance dad.
He thinks back on those years, struggles to hold back his tears, and
fails.

He pauses, regains his composure and continues his recollections.

“One of the strongest people I have everknown is Shelby Parker,”
he says. “She was constantly told in school that she was not going
to be able to go to college, that her grades weren’t good enough, and
that made Shelby very angry. … I know she’s my daughter and I’m
biased. I just feel that there is a lesson to be learned through
what Shelby has had to deal with.”

Shelby did go to college and, thanks to John, she climbed
mountains, traveled cross-country and toured Britain. He taught her
how to play the guitar and — after she learned 12 chords — bought
her a one of the best, a Martin.

Most people with cystic fibrosis don’t live past the age of 30.
If Shelby’s life had to be short, John wanted to make sure it was
full.

Sometimes, in the early evenings, Dr. Samuelson would hear the
strains of John’s guitar coming from Shelby’s room when he made his
hospital rounds. The doctor would pause at the door. He didn’t want
to disturb them.

So, now that Shelby can’t go hiking, she and John spend time
together in the hospital. He doesn’t get sick anymore, but it’s
never easy. Shelby’s tenacity and honesty continue to amaze him and,
sometimes, infuriate him. They bicker all the time. Their squabbles
are the stuff of family legend. They adore each other.

Still, Shelby accepts the reality of her condition in a way her
father cannot. She knows her death and her cure lie ahead like She’s
let her mind wander down both paths. John tries, but hesitates.

“I was sitting with Shelby and she informed me about how it was
she wanted to die,” John says. She was specific. There would be no
machines, no lingering in a hospital. If her life had to end, she
wanted it to be at home.

He is always astounded by how frankly his daughter deals with the
prospect of dying. He responded not just as a father, but as a
lawyer. He helped her write a will.

Until recent successes with lung transplants, death was the only
path open to someone like Shelby. Back then, Samuelson says, most
cystic fibrosis patients preferred to pass on quietly rather than
linger on life support without hope. Now, they want to hold on for a
set of lungs, no matter how ill they become.

Because organs are in short supply, there are more tears than
happy endings. For each person who gets a new set of lungs, two die
waiting.

Strong patients decline so quickly they no longer qualify for the
transplant list. Others don’t make it through the operation. Or,
they die before their new lungs ever show up.

Samuelson, who treats about 85 cystic fibrosis patients at a time,
has seen it all. The uncertainties of science and fate cloud the
life-and-death decisions each of his patients must face.

“If it were as simple as pulling the plug or not pulling the plug,
it would be a lot easier,” Samuelson says.

So for now, Shelby hovers in that limbo. Every time she has a bad
episode, John prepares himself for the worst, his wife, Lynette, said
later. When Shelby gets better he finds hope, and when she gets sick
again he loses it.

“He relives that death a thousand times,” she says.

###

“How are you going to take all those notes and write a a story?”
Shelby asked.

She sat on the couch watching me scribble away in a notebook
marked “Shelby III.” I take lots of notes. Sometimes I would put
the pad down and we would just chat. We would talk about her.
Sometimes, we would talk about me.

How am I going to write this story? Well, I explain how I’ll take
all the notebooks, read through them and mark the interesting
passages. I’ll consider what I’ve seen and heard and hold that up
against her thoughts, her parents’ memories and her doctor’s
diagnosis. Then, I’ll decide what the story will say.

But there’s one thing about the story I can’t control: how it will
end.

###June 29, ninth floor, Duke:

Shelby sits on her hospital bed in her usual lotus position. Her
mom, Winks, has come from Greensboro for a visit, but a trip to the
gynecologist has left Shelby in a bad mood.

A nurse pokes her head in the room and asks how the exam went.

“Uncomfortable,” Shelby says, not looking up.

She’s not getting her periods — a common problem for a woman so
thin. She doesn’t buy that. “It’s because of the stress and because
I’ve been sick,” she says with a scowl.

Her mom says nothing.

A small woman with curly hair, a firm voice and a patient
expression, Winks is a special education teacher who spends summer
vacations working in her garden and relaxing.

Her life seems settled, but it wasn’t always that way. The task
of caring for Shelby as a child fell to Winks when she was a single
mother working toward her graduate degree. It wasn’t easy.

When the doctors told Winks that her baby had cystic fibrosis, she
knew nothing about the illness.

“I thought they would give her something and it would go away,”
she says.

Instead, little Shelby only got sicker. She had several serious
infections as a toddler and nearly died. After Winks and John split
up, the chloromycetin triggered Shelby’s blindness. On top of her
lung problems, she had chronic ear infections and wet her bed until
the age of 9. Her teachers identified her as learning disabled, and
at 11 she was diagnosed as clinically depressed. Shelby lets out a
long, chest-rattling cough, but Winks just talks over it.

Raising a sick daughter was not without its rewards, she says.
Shelby helped her gain the courage she needed to move away, go back
to school and start a new life after her divorce.

“Being around that kind of personality really helped me take
stock,” she says. “She helped me believe in my life because she
believed so much in hers.”

At the same time, the qualities that allowed Shelby to persevere
also made her difficult to deal with at times. In a 1985 paper Winks
wrote for a graduate school course on childhood development, she gave
credit to Shelby’s resilience, but also described her as an
“inflexible, obstinate, stubborn, willful, opinionated,
uncompromising child to discipline.”

It’s not Shelby’s favorite piece of writing.

“I can’t believe you said some of the things you said about me,”
she tells her mom.

By now, Shelby has settled down over the pelvic exam and has some
good news to report. She’s not feeling so sick all the time and she
gained two pounds.

“The other morning I was up to 72,” she says. “74 at night.”

And, she is going to start a flower garden.

They send her home a week later.

Privately, Winks says she can’t bear to see her daughter suffer
much longer. She wants relief for her child, one way or another.

“I’m not afraid for Shelby to die,” she says. “I don’t think
she’s afraid to die. … It’s living like this that I have problems
with. I have a hard time seeing her in distress.”

###July 25, Ninth floor, Duke University Medical Center:

Shelby and her father have just had an argument, an ugly one as
she tells it. They are at odds over why she’s back in the hospital.
He says she’s overexerting herself. She says it’s just the disease.

“Shelby was feeling real frightened this week because she couldn’t
get her air,” John says.

She felt good until she went out to the movies with some friends,
and then stayed up late the next night, he says.

“I just couldn’t cough,” she says.

John thinks Shelby pushes herself too hard, and Shelby thinks he’s
the one who does the pushing. Sometimes, she puts her head in her
hands when he talks.

“She did too much too quick,” John says. “She wants to have a
normal life.”

Shelby looks annoyed.

“At night, though, I feel so good,” she says.

Now she’s hooked up to the IV again, and it may take a little
longer for this infection to clear up, they say. The doctors are
reserving a few antibiotics for after the transplant. That way,
Shelby won’t have much of a resistance to them.

In the meantime, Shelby has launched her gardening project.

“I have a nursery in the bathroom,” she says, nodding toward the
tray of dirt just beyond the open door. The pansy seeds should
sprout in a few days.

After her father leaves, Shelby sighs and apologizes for the
tension in the air.

“I don’t think he looks at my disease very realistically,” she
says. “He pushes me to do things I can’t do and it makes my life
hard.”

The discussion they had about this got so heated, she says, John
was about to walk out of the room.

“Maybe I didn’t say it in a nice way,” she says. “I guess we have
to be patient with each other.”

He finds comfort in denial, she says. She finds comfort wherever
she can. Often, she turns to God and prayer. She believes in the
afterlife and often dreams of heaven. Her mother says that at age 2,
Shelby delighted family members by saying she could feel God inside
her because “his beard was tickling.”

Shelby has always had a spiritual side that is both emotional and
intellectual. She majored in religion. In poems and prayers, she
often pleaded with God to explain why she had to carry such a burden.

Sometimes she dreams of an afterlife when she will carry that
burden no more. During a conversation in the hospital, she says she
had a dream of heaven. “I was in a field and it was huge and I could
fly and I felt totally at one with God,” she says.

For now, she wants God’s help in this world.

“In high school, I used to pray to God to cure me of my disease,”
she says. “When the transplant came, that was an answer to my
prayers. It’s a miracle they can do that kind of operation.”

###

I got a little note at the office from Shelby, thanking me for
sharing printouts from the computer bulletin board. The card was
shaped like a heart, with a wreath of flowers on the front.

“Hi! Just to say thank you again for all of your help in my
reaching out to others with CF from all over. It always is a little
less lonely to remember on my down days that I’m absolutely not
alone. See you Wednesday, Love, Shelby.”

##August 31, Park Drive, Raleigh:

Shelby’s been home for about three weeks now. She’s in a real
holding pattern. She watches television. She reads the Bible. She
saw a documentary on Eleanor Roosevelt and got a large-type book from
the library about the former first lady’s life.

Today, she sits at the dining room table with a portable phone,
looking glum. She still doesn’t go out much. Some of her father’s
friends try to get her out of the house, but she doesn’t really enjoy
the outings.

“They come and see me and take me out and tell me all about their
lives,” she says. “I just don’t have anything in common with them.”

Then there’s Brad. She met him a few months ago, when a friend
brought him by the house. A student at N.C. State University, Brad
took a liking to her and visited her in the hospital.

He’s taken her to the mall. Now he wants to take her to Charlie
Goodnight’s, a comedy nightclub where he and a group of friends meet
once a week. She wants to go but has her doubts.

It’s not that she’s easily exhausted. It’s not the oxygen tank.
She’s uncomfortable with the way strangers relate to her.

“I was afraid that they would see me the way he did in the
beginning,” she says. “He was enchanted by my disability and my
strength and how I dealt with this.”

So, she had a long talk with him about that. He promised to try
to see her as a person, not a patient. Since then, she’s stopped
referring to him as a “boyfriend,” but she still gets that moony-eyed
look when she talks about him.

“He’s so sweet,” she says. “He’s very romantic. He would be a
very good boyfriend.”

Meanwhile, she’s up to 77 pounds. Her medical records still note
“significant malnutrition,” and she continues to struggle with the
tube feeding. Dr. Samuleson says her inability to gain weight is
both a cause of her decline and a yardstick of its severity.

She is now No. 11 on Duke’s lung transplant waiting list. She’s
hanging her hope on new lungs, but she sometimes worries that she may
grow too frail to handle the operation. So do her doctors.

“The longer I wait, the more I know that possibility is there,”
she says. “But I believe God wants to give them to me.”

###September 26, Duke University Medical Center:

Shelby lies on her side in her hospital bed as a nurse pats her
back, trying to loosen the mucus. Her legs, without her lap pillow
to cover them, look bone-thin. She’s just been moved back from the
intensive care unit. Winks sits at the end of the bed.

“My lung collapsed,” Shelby announces. “I have this tube in my
chest. It’s very irritating.”

About five days ago, doctors think, a cyst in one lobe of Shelby’s
lungs burst during a coughing spell. The fluid flowed out of the
cyst, pushing her lung up against the chest wall. Luckily, she was
already in the hospital.

As doctors were trying to sedate her so they could treat her lung,
she blacked out and all of her vital signs, including her pulse,
disappeared.

They were able to bring her back.

When she came to, she was in the intensive care unit. She spent
five days there, hooked up to even more tubes and hoses than usual.
She didn’t much like it, and was glad to be moved out.

“It’s real loud,” she says. She doesn’t know the nurses down
there and feels she needs to check them out before they put in her
IVs.

“She hate IVs,” Winks says. “She’s always interviewing people.
… ‘How long have you been doing this, how many have you done?'”

Now she’s hooked up to something even worse. A long yellow tube
runs from an incision near her ribs, out from under her nightgown
into a bubbling pump on the floor. It is siphoning the fluid out of
her lung, and it hurts.

An intern knocks on the door, sticks his head in and asks how she
is doing. Shelby asks him for Tedral, a drug that helps open the
airways in the lungs. It also contains a low dose of phenobaritol, a
narcotic.

He seems a little put off by her request, but she politely
persists.

“I’m just having a hard time getting comfortable,” Shelby says.
The intern looks blank.

“I guess we’ll have to deal with it,” she says. ~~ For Shelby,

For Shelby, one good think has come out of this episode. She’s

been jumped to the top of the transplant list.  The next small set of

lungs that comes in is hers.

I sent a note out informing members of the CF computer group

that Shelby was  in the intensive care unit. Several responses

come back with messages for Shelby, including one from Paula in Texas.

“Hang in there darlin’! Good times are coming!!!!! Hope your recovery is

a speedy one and remember   Keep smiling… sure does confuse the heck

out of them! Love, Paula.”

 October 4, ninth floor. Duke University Medical Center

Shelby’s still in the hospital. The doctors think she’ll have to

stay until the transplant. She’s struggling with all her usual

complaints, as well as the pump running up under her ribs.

When Dr. Samuelson comes by for his evening rounds, Shelby tells

him she’s having a bad day He checks her blood gases, a measure of

how well her body is absorbing oxygen.

“They were bad ” he said later, “But they were basic Shelby.”

Her bad day turns into a bad night. She calls home and asks for

company. Lynette drives over and stays by her side. Shelby struggles to

breathe and suggests that she may need to go back to the intensive

care unit. The doctor and nurses on duty do what they can to help

her get more comfortable. They give her a gas mask so she can

inhale aerosol drugs.

A team from the ICU comes up to evaluate her for the move.

At 4 a.m., two nurses begin patting Shelby’s back to loosen her

mucus and Lynette takes a break to use the restroom down the hall.

When she comes out, she sees doctors and nurses rushing into

Shelby’s room. They’ve called “code,” hospital lingo beckoning

staff to help revive a dying patient.

Shelby has stopped breathing. The doctors and nurses circle around

her and do everything thev can to get her back.

Then, they stop. At 4:50 on the morning of October 5, 1994, Shelby

Parker is declared dead.

Outside the front steps of Shelby’s house, her pansies have sprouted

and grown, but not yet bloomed.

I set out to write Shelby’s story, but now she is writing mine. I have

seen disease more closely than I wanted to, and I will never see it the

same way. Cystic fibrosis now has a face for me, and a voice …

a squeaky, child’s voice.

Science usually cures chronic illnesses over decades, not overnight.

I have learned what it’s like to get another day, another year, but never

another chance. Shelby helped replace the black type of my headlines

with the full-color reality of disease: the wracking coughs, the tortured

family, the tube feedings and other indignities a patient tolerates to survive.

I still cover medicine, but with a different perspective. I know now

that inside every patient lives a Shelby.

One by one. I let the folks on the computer bulletin board know

of Shelby’s death. Zack, the child of another computer group member,

died about the same time. The group mourns them both and a new discussion

begins, this one on grieving.

On a jog through Raleigh’s Oakwood Cemetery, I discovered that

my usual route passes by Shelby’s grave. Because of her dream of heaven

as a meadow, her family put a little grass in her casket. She’s buried near a

footbridge over a small creek, but the plot does not yet have a stone.

In her will, Shelby left the funeral plans to her family, but she did make

one request Her head stone must not lie flat, she wrote, “as I wish to be

recognized.”

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