STORY - Life with Lupus

[Guest guest]

Via Joan A:

Life with lupus

By Heil

The New Mexican

May 1, 2005

She remembers when she won wrestling matches, cheered at basketball

games and played clarinet without getting winded.

When she sat in class without a thought about germs.

When each day didn't start and end with five pills and a

blood-pressure reading. When clumps of hair didn't fall out when she brushed

it.

When she could eat fistfuls of salty chips without being scolded by

her doctor.

Jaclyn Gallegos won't ever forget. Nor will her parents, and

Connie Gallegos.

Just three months ago, Jaclyn, a feisty fifth-grade student at

Elementary School, was diagnosed with lupus, a chronic autoimmune

disease that can cause kidney damage, arthritis, heart problems and other

illnesses.

Now, she said, " I don't run as fast. I don't have that much energy. I

can't eat some of my foods - fish sticks, chicken nuggets, potato chips,

Tater Tots, macaroni and cheese. "

Jaclyn anticipates the day when the sickness goes into remission and

she can reclaim her past.

But lupus, the Latin word for wolf, is known to be an unpredictable

beast that attacks without warning. And there is no cure.

What is lupus?

" The wolf is inside, tearing up the place. " That's how author Flannery

O'Connor described the disease that killed her in 1963, and her father

before her.

What actually happens in individuals with lupus is they produce

antibodies to their own body tissues. It's a kind of self-allergy.

The disease is more common in women than men; in adults than children;

and in Asians, blacks and Hispanics than Anglos. Some families have a

genetic predisposition for it, but the disease doesn't come out of hiding

unless triggered by an infection or something else.

" Usually in kids - if it really gets cranked up - it's as bad as

you'll

see it, " said Dr. Ronnie Garner of Presbyterian Hospital in Albuquerque.

There is no single lab test that can determine whether a person has

lupus, although certain signs help distinguish it from other diseases: rash

over the cheeks, raised patches on the skin, severe reaction to sunlight,

mouth ulcers, arthritis of the joints, inflammation of the heart or lungs,

excessive protein in urine, seizures, anemia, a positive test for

antinuclear antibodies and a positive test for immunologic disorders.

In children, the disease tends to manifest itself through damage to

the kidneys or the brain. In adults, skin and cardiac trouble are more

common, said Dr. , a pediatric kidney specialist who treats

Jaclyn.

By the time Jaclyn was diagnosed, her kidneys were functioning at

one-third of what is normal, and she was anemic.

" She has a very aggressive case, " said Garner, Jaclyn's other doctor.

" When you look at her, she looks pretty good. But underlying all of this is

a potentially very serious and even possibly fatal disease. "

Tracking the wolf

Because symptoms of lupus are so nonspecific, it is difficult to

diagnose.

In fourth grade, Jaclyn had headaches almost every day after school.

Nothing more.

By fifth grade, she experienced flashes of pain in the joints in her

legs and arms, but the episodes lasted 10 minutes at most. Given her

propensity for aggressive play, her parents didn't pay much attention.

Sometimes her cheeks looked rosy. Sometimes they faded to white.

Sometimes she had dark circles under her eyes. The doctors passed these

symptoms off as a rash or allergies, said. Only later did everyone

realize what they were noticing was the butterfly-shaped rash that often

marks lupus patients.

Jaclyn continued to complain about feeling tired. Her glands hurt to

touch. and Connie wondered if their commute from Albuquerque to

their state government jobs in Santa Fe might be causing the fatigue, even

though Jaclyn and her sister slept in the car, ate breakfast at their

grandparents' house and played there after school until it was time for the

drive home.

They even wondered whether their daughter was just seeking extra

attention. Then one day, she could barely move her swollen hand. Connie

suggested Jaclyn had sprained her wrist doing cartwheels, but took

her to the Urgent Care clinic on Rodeo Road to be examined.

Doctors ordered a urine test and found Jaclyn had a kidney problem.

They also suspected leukemia, or another type of cancer, because her

white-blood-cell count was low.

At Presbyterian Hospital in Albuquerque, doctors made the diagnosis:

systemic lupus erythematosus with class-IV kidney disease. They told Jaclyn

her kidneys were like a spaghetti strainer that had been hammered until it

had big holes in it, allowing blood and protein to seep into her urine. (She

later used the description as the basis for a science experiment, involving

pinto beans, water and two spaghetti strainers, that won her a blue ribbon

at her school.)

To this day, the doctors aren't sure what switched lupus on inside

Jaclyn.

According to the Lupus Foundation of America, extreme stress,

sunlight, viral infections, cigarette smoke, trauma, puberty, childbirth and

menopause are some of the triggers.

If you ask Jaclyn, she'll say crickets did it.

Now she has started an arduous treatment program involving immune

suppressants and steroids that will last between six months and a year.

" The steroids cause you to gain weight, get diabetic, lose your hair.

The drugs themselves can be sterilizing, " Garner said. " It can be a pretty

dismal disease, and yet the drugs that we currently have present us with a

fair amount of hope. "

Living with lupus

Since her diagnosis, The New Mexican met up with Jaclyn and her family

as she received treatment, went back to school, even visited the state

Legislature to warn people about lupus.

Feb. 18: After 13 days in Presbyterian Hospital, Jaclyn returns home

with a puffy face (from the steroid treatment), bottles of pills, dietary

restrictions and a voracious appetite that won't go away no matter how many

peanut-butter-and-jelly sandwiches she gobbles up. But at 68 pounds, she's

not worried about getting fat.

March 16: Jaclyn is cheerful and talkative while Cytoxan, an

immune-system suppressant, drips slowly into her veins for several hours.

Her first outpatient chemo treatment is a family affair. , who drove

in from Santa Fe, wears his dress shirt and tie. Sister , 5, talks

about the bearskin she took to show and tell. Jaclyn explains that her

father shot the bear and how she hopes to one day be a hunter.

March 17: Armed with a handmade poster warning people not to be fooled

by lupus, Jaclyn answers questions from visitors to the Roundhouse and

shakes hands with Gov. Bill .

March 20: As she is heading to the bathroom to vomit, Jaclyn's body

becomes stiff. " Daddy, I feel really weird, " she tells her father. " I feel

weak. "

She has seizures in bed, on the living-room floor, in the ambulance

and in the emergency room. Her parents think she is having a bad reaction to

the chemotherapy, but it turns out that the seizures are a new manifestation

of her lupus.

" The antibodies hit my brain cells, " Jaclyn explains later.

Back in the hospital, she's angry, asking for the first time, " Why

me? "

Jaclyn, who already missed wrestling tryouts and the fifth-grade

Valentine's Day dance during a prior hospital stay, is now missing the

entire spring break and Easter.

is sad, too. " I started crying because I missed her and I

didn't

get to see her, " she says.

Jaclyn spends most of her 10 days in the pediatric intensive care unit

with a tube poking out of the jugular vein in her neck.

" It was a nightmare, " Connie says. " I had never experienced that

before and neither had she. "

Jaclyn leaves the hospital with new medications and a more aggressive

treatment plan.

March 30: Glad to be home at last, Jaclyn takes a hot bath, wraps up

in her blanket on the couch, eats a baked potato and talks to .

The Powers talent agency calls to talk about hiring Jaclyn

for a peanut-butter commercial, but her parents decide the timing isn't

right.

And some nights, Jaclyn has trouble going back to sleep if she wakes

up. " I feel a little nervous because I don't know what's going to be

happening in my body now, " she says.

April 5: Jaclyn returns to class at Elementary with a short

haircut, a lavender lupus pin affixed to her shirt and a surgical mask over

her nose and mouth. While lupus isn't contagious, she has to do everything

she can to prevent getting an infection, a leading cause of death in lupus

patients. In the hallway, a kindergarten student inquires, " Are you a

doctor? " " No, " Jaclyn says, laughing.

Later in the day, she's randomly selected to be Student of the Week.

All the kids in Elaine Pacheco's class write a report about Jaclyn's family,

her pets and her interests. She says she wants to become a veterinarian or a

doctor and her heroes are her mom and dad.

" Everybody missed her when she was gone, " says ez, 10.

Jaclyn's friend Johannah asks her about lupus. " Is it like a very

bad illness? " she asks at lunch.

" I would say it kind of is for me - like seizures, " Jaclyn says.

April 13: Jaclyn's antinuclear antibody count, a marker of the

disease's

activity in the body, has dropped from 10,500 to 40. The goal is zero.

" We're

heading toward remission right now, " says.

A few days later, , who just recovered from strep throat, breaks

out in chickenpox.

" I had to laugh. I just can't cry anymore, " Connie says. " It's just

too unbelievable. " For protection, Jaclyn gets antibiotics and a shot in the

rump. And keeps her distance from .

says she wishes she had been born first so she could be a

doctor and " fix " her sister.

and Connie have described the girls as opposites. Jaclyn would

hold the door open for a stranger. would stick out her foot - to trip

the stranger.

But Jaclyn has noticed a change in her sister: " She's a little more

sensitive. When I get mad at her, she cries. "

Moving forward

Jaclyn is looking forward to eating her favorite, salty foods once she

is in remission.

" That's the Prednisone talking, " said, referring to one of the

steroids. " She's constantly hungry. "

Her parents can't wait to celebrate either, but they are guarded,

knowing the symptoms of lupus can come and go. " That fear of the unknown is

what's so hard in living day to day, " Connie said.

" In a lupus kid, we're talking about controlling the disease and

hoping that it doesn't spring up and chew them up later. We're always

looking for control, never thinking we've got a cure, " Garner said. " It's

like a snake in the grass, always there to bite you if something goes wrong,

if there's something that fires up your immune system, like a pregnancy or a

cold. "

If Jaclyn relapses, he will consider newer, more experimental

medications.

" Her kidneys right now look reasonable, " he said. " But if we don't

control the disease, they're always at risk. The kidneys are very frequently

the first thing to go. "

Named after Jaclyn , who played a detective in the 1970s TV

series Charlie's Angels, and Connie's daughter will have plenty of

dangers to tackle. They worry what will happen if another flare strikes.

Will Jaclyn be in a place where people know what to do? What if she is at

school? What if she is out of town?

Connie finds some peace of mind, though, in remembering how her

daughter aspired for a first-place trophy in wrestling and trained until she

won it.

" She goes after what she wants, " Connie said. " She's very sweet but

very determined. "

In their own words: What is lupus?

" Your body aches, and you get puffy a little. And when you're sick,

the stuff (white-blood cells) can't fight it off. "

- Natasha Acoya, 11, Elementary School classmate

" You'll get some seizures, and your kidneys are wrong, and you don't

know how you got this. There might be too much protein in your nails. If

you're

allergic to something and you have lupus, you'll die. "

- Gallegos, 5, sister

" If you have lupus, that means that almost on a daily basis you feel

crummy. Your energy is low. It is a disease that just drains people. It's

like somebody's got a spigot in your side, just draining your lifeblood out.

It is a tough life because lupus generally is for a lifetime. "

- Dr. Ronnie Garner, Presbyterian Hospital

http://www.freenewmexican.com/news/13264.html

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org