Jill Anderson Interview
San Bernardino County Sun
November 28, 2005

Taking her breath away
COPD cuts oxygen flow to lungs, makes simple movements difficult

By Mari Nicholson, Staff Writer

Jill Anderson working out
Jill Anderson, 58, of Rancho Cucamonga, exercises on a glider as she is attached to her oxygen machine.
(Will Lester/Staff Photographer)
It's been a long day for Jill Anderson.

After teaching English to sophomores at Alta Loma High School and getting an infusion treatment at Kaiser Permanente Medical Center in Fontana, the 58-year-old heads home to grade essays.

Carrying the stack of research papers from her car to the house is difficult. Either Anderson's students are wordy, or something else is wrong.

A little gardening before dinner would be a nice way to unwind, but it's too exhausting.

Similarly, entertaining company at her Rancho Cucamonga home or babysitting her grandchildren is challenging, and singing - one of Anderson's favorite pastimes - most recently in the Sierra Madre Congregational Church choir, is off-limits.

When your lungs function at 29 percent of what they're supposed to, it's hard enough to shower.

Having chronic obstructive pulmonary disease feels like "a sheet of wax paper between your nose and lungs," Anderson said.

This "sheet" prevents enough oxygen from entering the lungs when doing everyday tasks, no matter how mindless or routine. Undertakings such as bathing and drying off, dressing or taking the trash out become arduous, she says.

"The smallest amount of physical exertion tires you out like you're hiking," she said.

Even eating carbohydrates may produce too much carbon dioxide for a COPD sufferer to blow off, said physician Bill Chang, a pulmonary critical care fellow at both Jerry L. Pettis Memorial Veterans Medical Center in Loma Linda and Loma Linda University Medical Center.

And in what seemed like an endless list: Hair spray, spices, cleaning products, dust, et cetera, anything you can smell is a potential irritant, Anderson said.

Anderson wakes up around 5 a.m. to prepare for school since she just can't rush, period.

COPD is the fourth leading cause of death in the United States and is a primary reason people go on disability.

But Anderson's been teaching nearly 36 years, 23 at Alta Loma, and it provides her a necessary diversion from fear.

The basics

COPD is an umbrella term for lung diseases associated with airflow obstruction, usually chronic bronchitis, chronic irreversible asthma or emphysema.

COPD International says there's 16 million people living with the disease now, and an estimated 14 million people who haven't been diagnosed due to few or no symptoms.

"While the mortality rates of some other diseases have improved over the years, Chronic Obstructive Pulmonary Disease's rate has risen or hasn't really changed. We've slowed the COPD down, but not controlled it," Chang said.

Despite COPD's critical nature, only 23 states have adopted November as COPD Awareness Month, and California's not one of them.

The largest risk factor for the development of COPD is smoking, but Jill Anderson's never lit up.

Anderson's COPD is caused by a hereditary condition in which the body circulates a decreased amount of the serum protein Alpha-1 Antitrypsin due to the production of mutated Alpha-1 Antitrypsin, Chang said.

In a healthy body, AAT, also called alpha-1 proteinase inhibitor, circulates in the blood, protecting the lungs and body tissues from dangerous enzymes in white blood cells.

AAT, synthesized in the liver, counters these enzymes and is capable of increases in concentration in blood and tissues when temporary infections occur.

When abnormal Alpha-1 Antitrypsin is produced, the liver can't secrete it. The accumulating bad AAT can lead to liver and skin disorders.

In the lungs, said Chang, 32, low levels of circulating AAT allow the harmful enzymes to break down the alveolar region of the lungs where oxygen and carbon monoxide are exchanged, leading to emphysema.

At the time of her diagnosis in fall 2003, Anderson's inherited Alpha-1 Antitrypsin Deficiency was causing her lung functioning to break down irreversibly at a rate of 2 percent per month.

Early diagnosis key

When Anderson sees someone smoking in a car with a child in the back seat, it drives her crazy.

"If I had ever smoked, I'd already be dead, so it's awful to see someone subjecting their child to that, knowing (the child) hasn't been tested for Alpha-1," Anderson said.

In her early 50s, she started noticing and going to the doctor for symptoms: breathlessness, or having trouble getting a good breath, unexplained coughing and a cough in the fall that wouldn't go away.

Trouble is, early 50s is late.

Looking back 30 years, there may have been warning signs Anderson interpreted then as just being out shape. She remembers a time she was winded following her son, then 3, around with a video camera.

"You could hear me breathing and huffing on the video as I attempted to narrate," Anderson said.

Her childhood asthma and bouts with bronchitis may have been indicative of Alpha-1 Antitrypsin Deficiency, "but Alpha-1 usually affects the liver first," Chang said.

And the lungs later.

By the time serious symptoms develop, lung capacity is already reduced by 50 percent in some patients, according to Emphysema Foundation For Our Right To Survive, or EFFORTS.

In August 2000, at her first spirometry check -- a simple breath test used for the early detection of many lung disorders -- Anderson's lung capacity was at 47 percent, 18 percent higher than her lung capacity now.

More than three years later, after more spirometry tests, chest X-rays and being told her COPD was due to breathing in smog or too much exposure to her father's smoking, Anderson's primary care physician did a simple Alpha-1 Antitrypsin blood test. Normal is 150, but 50 or above is OK, too. Anderson's was 22.

Staying alive

"I wake up a lot to make sure I'm still here."

Anderson hasn't slept through the night more than three times since being diagnosed.

She abandoned her bedroom a long time ago for the greater comfort of her fluffy, L-shaped couch. The furniture's arms and pillows support her breathing efforts better than a bed does. At best, Anderson sleeps six hours. Oxygen levels decrease in a COPD or Alpha-1 patient's sleep; this reduction can cause damage to the brain and other organs if not corrected.

She uses a pulse oximeter, a small device that measures her blood-oxygen level. When her numbers dip, she hooks up to a supplemental oxygen cylinder by Apria that's delivered to her home and refilled regularly.

In addition to daily inhalers and the supplemental oxygen, Anderson has augmentation therapy, weekly infusions of Prolastin, Alpha-1 Proteinase Inhibitor (Human), to increase the AAT protein levels circulating in her blood.

For a year and a half, every Wednesday for about an hour, Prolastin -- prepared from pooled human plasma of normal donors -- is administered to Anderson intravenously and cost-free.

"Right now my insurance covers everything, but I worry about when Medicare kicks in at 65, if they'll cover it," Anderson said.

She's still weighing the cost and benefit of another option, a lung transplant, and she's not on the waiting list yet.

COPD awareness

Quickly after Anderson's diagnosis, Chaffey Joint Union High School District purchased an audio enhancer for Anderson. Worn around her neck, it projects Anderson's unraised voice out of four speakers into her classroom.

Riley Bendel, 15, of the Alta Loma area of Rancho Cucamonga, can hear her with the enhancer on.

"Mrs. Anderson told the whole class on the first day that she has a problem with her lungs that will make her out of breath, that she inherited it from her genes and not from smoking," Riley said.

She teaches her class "To Kill a Mockingbird" . . . and to just say no.

Nov. 18 was World COPD Day 2005 organized around the theme, Breathless Not Helpless!, and as established by President Bush in 2001, this is COPD Awareness Month.

"It's crucial to bring attention to this, and encourage people to get spirometry tests now, before they have symptoms," Anderson said.

EFFORTS is urging medical professionals to include a spirometry check in annual physicals and "if you've been diagnosed with early onset emphysema and you're under 45, it's a good idea to get an Alpha-1 Antitrypsin Deficiency test and stop smoking," Chang said.

He also recommends that couples considering pregnancy get screened for the Alpha-1 Antitrypsin Deficiency genes.

And the Alpha-1 Foundation along with the Medical University of South Carolina sponsors a free and confidential ATT Deficiency test with a kit that can be sent to the home.

"The biggest enemy is a lack of information," Anderson said.



Shortness of breath while at rest or with exercise

Wheezing, persistent cough

Recurrent lung infections

Persistent sputum (or phlegm) production

History of suspected allergies and/or asthma

Sinus infections

Source: Alpha-1 Foundation


Alpha-1 Foundation: www.alphaone.org

Emphysema Foundation For Our Right To Survive: www.emphysema.net

Global Initiative for Chronic Obstructive Lung Disease: www.goldcopd.org

To become an organ donor: www.shareyourlife.org, donatelifecalifornia.org

Mari Nicholson may be reached at mari.nicholson@sbsun.com, (909) 483-8549 or in care of The Sun, 2239 Gannett Parkway, San Bernardino, CA 92407.






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