Nancy and Barbara Paris
Caregiving

My Sister's Lungs, Part 4: The Beginning

Editor’s Note: In the fourth part of a five-part series, thirdAGE contributor Nancy Wurtzel (at right in the above photo) shares the ordeal her sister Barbara (at left in the above photo) is undergoing as she waits for a match for a lung transplant. Barbara’s situation is complicated by the fact that her husband, Jim, has Alzheimer’s. Additionally, the sisters’ mother is suffering from dementia as well. Here is the story of a family on a frightening, grueling healthcare journey of the kind that will be all too familiar to millions of Americans. You can read the first installment here, the second installment here and the third installment here. For an article by Nancy on the “organ transplant gap,”  click here.

By Nancy Wurtzel

My older sister, Barbara, worked in the health care field for many years.  During the 1980s, she was director of public relations for a large hospital in Southern California, and later ran her own business, consulting for a variety of medical clients.  She understood the health care system and knew how to navigate it.

But when her health began failing her some 16 years ago, Barbara found that getting answers wasn’t all that easy.

In the early stages, Barbara’s her illness seemed a mere inconvenience.  It started with a series of colds that kept coming back, a cough that lingered and a chest infection that seemed resistant to regular antibiotics.  As the years wore on, she began to experience a shortness of breath when walking upstairs, and she had a few bouts with pneumonia.

However, since her doctor didn’t seem too concerned, it was easy for my sister to believe she’d feel better soon.

But the respiratory symptoms didn’t disappear.  Steadily, they got worse.

Seeking answers, Barbara made an appointment a highly-regarded pulmonologist.  When he couldn’t pinpoint the underlying problem, she went to another.  After seeing a third specialist, she wasn’t any closer to getting a diagnosis.

By this time, Barbara was worried.  Her anxiety soon propelled her to Mayo Clinic in Rochester, Minnesota.  Their diagnosis was Interstitial Lung Disease, an incurable, progressive condition.  Later, Barbara would learn it was caused by hypersensitivity pneumonitis; a toxic lung inflammation brought about by breathing in a foreign substance like fungus or mold.

My sister finally had a name to go with her condition, but she had no idea what had caused it.  Her Mayo doctors theorized she must have inhaled something very toxic over a prolonged period.  Whatever she had breathed had seriously damaged her lungs.

Doctors quizzed Barbara repeatedly about how she might have contracted the disease.

It was a puzzle with missing pieces.

Then, just a few years ago, Barbara was talking by phone with her ex-husband, whom she had only recently reconnected after many years.  While they were chatting, her former husband made this off-hand comment, “I’ve always thought your illness was caused by working in that sick building.”

“What sick building?” Barbara asked.

She didn’t know it then, but some of those missing puzzle pieces were beginning to drop into place.

Back in the mid-1970s, when Barbara was in her mid-20s, she took a job as an information officer for the State of Minnesota.  Her department, along with many others, was housed in a large office building adjacent to the state capitol.

This building had a complicated past.

Originally built as a small factory in 1912, the building was enlarged several times over the years, and by the late 1960s, the cobbled-together structure also housed a large warehouse.    The old four-story building certainly wasn’t desirable, but the location was.  A local developer purchased the aging complex, reinforced the existing structure, made cosmetic changes and then added five new floors.

Upon completion in 1970, the now nine-story building was sold to the State of Minnesota and renamed the Capitol Square Building.

Along with 600 other state employees, my sister worked in the Capitol Square Building for five years.  Her office was located on the fourth floor, which was essentially part of the original factory.

Looking back on those days, Barbara remembers having a series of colds and sinus infections.  In particular, she recalls one winter when she was sick almost continually.  My sister wasn’t the only one experiencing health challenges.  Many of her co-workers also had similar symptoms, but no one connected their maladies to their work environment.

In 1982, Barbara’s life changed dramatically.  In the middle of a contentious divorce, she decided to leave her job and relocate to the Los Angeles area, where she lived for the next 15 years.

While my sister was enjoying a new chapter of her life on the West Coast, she had no idea what was happening to her former colleagues back in Minnesota.  Capitol Square Building workers were coming forward and complaining of headaches, breathing problems, upper respiratory infections, cough, and asthma-like reactions.

They were also beginning to connect the dots and place the blame on their workplace environment.

However, the wheels of state government moved slowly, and little was done to determine if the building was indeed toxic for those who worked there.

After years of complaints, an employee union initiated the first comprehensive evaluation of the building.  The study, released in early 1998, revealed water was seeping through the walls of the original factory building and had resulted in high levels of contaminants.  The walls, carpeting, and even the ventilation ductwork were infested with mold, fungi and bacteria.

According to a March 3, 1998, Minneapolis Star-Tribune newspaper article by staff writer Donna Halvorsen, the building had a history of problems dating back to 1988.  Citing the damaging report, Halverson wrote the building was found to have “…high levels of contaminants…”

Suddenly the building and the employees working there had become a front-burner issue noted Halvorson.  She wrote, “The State Health Department then recommended that employees be moved as soon as possible.”

Further investigation revealed the building was deemed too sick to save, and two years later the Capitol Square building was demolished.

Since learning that Barbara worked in a sick building, we’ve done some digging.  We’ve not determined how many state employees who worked at Capitol Square suffered long-term health problems, but we did learn some employees who worked in the Capitol Square Building took legal action.

Barbara consulted with several of the law offices who handled these cases, only to learn the ‘window of opportunity’ had closed.  Evidently, employees were given a decade to seek help from the State of Minnesota for medical and related costs linked to the toxic work environment.  The opportunity for redress has long passed.

We have lingering questions that may never be answered.  If Barbara had known about the sick building, would she have been able to get a diagnosis sooner?  Could early medical intervention have changed the progression of her lung disease?  Did the State of Minnesota make attempts to locate former employees who worked in the sick building?

We’ll never know.

After she had learned the details about the sick building, Barbara seemed angry, and rightly so.  To her credit, she was ultimately able to let go of these feelings and move forward.  She has a great attitude, never feeling sorry for herself or asking ‘why me?’

This forward momentum is an admirable trait, and it will serve her well when she does have a lung transplant.  We both hope that will happen soon as my sister’s health is on a slow, relentless decline.  Until then, we look to a future when she has better health and the opportunity to live a much longer life.