Nancy and Barbara Paris

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.”