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TOBY’S STORY

I have no doubt that many people remember different things and would tell this story differently. This is just my recollection as her proud daughter. – Rachel Wilgoren, January 2007

Toby Neipris Wilgoren, of blessed memory, died on Mother’s Day, May 14, 2006, at the age of 59, after a long and hard-fought battle with a terminal lung disease called pulmonary fibrosis.

She was a vibrant, loving and compassionate person who dedicated her life to her family and her career as a nurse until she was forced to stop working when diagnosed with pulmonary fibrosis in 2000. Her family and friends miss her every day, and her death left a void that will never be filled.

Toward the end of 2000, Mom’s breathing had become very labored. She told people she was having trouble with her asthma. When I returned home for Thanksgiving break from graduate school at Columbia, however, the problem seemed much more serious than asthma. I forced Mom to go to the doctor, and she was diagnosed with pulmonary fibrosis that very day, although we had to wait for the pathology to confirm the diagnosis.

Mom had taken Thanksgiving week off from her job at a private psychiatric hospital, working with mentally ill adolescents, to clean and cook in preparation for a family Thanksgiving celebration. She intended to return to work the Monday after Thanksgiving. Instead, she was told by the doctors that — after nearly forty years of nursing others back to health — she could never return to work again, would spend the rest of her life on oxygen and would eventually succumb to pulmonary fibrosis.

In many ways, Mom defied the odds. At the time of her diagnosis, she was told that the normal course of the disease is between two and six years, and that she was more than halfway through that time. Her lungs were only functioning at around 10%, and she was given roughly a two year (at best) prognosis.

Rather than feeling sorry for herself, Mom used her days to learn as much as she could about pulmonary fibrosis and to spend as much time as she could with family and friends.

In brief, pulmonary fibrosis is an autoimmune disease, in the same family as multiple sclerosis and rheumatoid arthritis. Its cause is not known, and there is no cure — only medications to delay the progression of the illness. Somewhat like cystic fibrosis where the lungs fill with liquid, eventually preventing breathing, with pulmonary fibrosis, scar tissue forms in the lungs, making it more difficult and, eventually impossible over time, for oxygen to move through the lungs.

The next five years were a medical roller coaster for Mom. She explored the option of a lung transplant, but was eventually told that, due to her age and weight, she was not a viable candidate. Mom was given the same drugs that many pulmonary fibrosis sufferers are given, which are actually the same drugs used for other diseases, including certain types of cancer. The main drugs she took were Prednisone (a steroid) and Cytoxan (an immunosuppressant). While they helped to slow the progression of Mom’s illness, these drugs brought with them a host of other problems from puffiness of the face (the stereotypical prednisone “moon face”) to serious bladder problems (which led the doctors to conclude, at one point, that she had bladder cancer).

At first, Mom seemed the same, only she used oxygen and used a walker when she walked a long distance. She was just much more out of breath when she was active. She was even able to participate in a pulmonary rehabilitation program at New England Sinai Hospital, where she deeply respected and loved her health care providers.

Over time, Mom’s functioning deteriorated to the point where she could no longer live at home. In 2004, she sold our family home in Sharon, MA, where she had lived since 1972 and where my brother, Pete, and I grew up, and moved to Cohen-Florence-Levine Estates, an assisted living facility in Chelsea, where her then 93-year-old mother (my Nana) had lived until a few years earlier. For a while, her condition plateaued at this level, so that she was still able to drive, go shopping and visit Nana at Chelsea Jewish Nursing Home down the street.

Because of the immunosuppressants Mom took, she was continually at increased risk of contracting an illness. Even a common cold presented a great danger to her health. Due to Mom’s fluctuating oxygen levels and increasing need for more oxygen, she had to stop driving. The ability to drive was, perhaps, her last real measure of independence, so this was a serious blow.

While at CFL, Mom’s oxygen levels became unstable, however, requiring a series of hospitalizations for pneumonia, COPD and other difficulties. It got to the point where Mom never got back to a stable baseline; each illness and hospitalization increased her oxygen needs and concomitant medical problems.

After a meeting in early 2006 with all her health care providers, in which Mom, Pete and I all participated, Mom decided that it was time for her to receive an increased level of medical care, and she decided to stay at CJNH, where she had, ostensibly, been doing rehab, since a late 2005 hospitalization, and where Nana — now 95-years-old — lived.

I cannot bring myself to write about the last months of her life. While we all knew what was coming, we, of course, hoped that she would continue to defy the odds. Suffice it to say that Mom made peace with her illness, as she prepared to die. In addition, she maintained a positive attitude always and fought for every breath until the very last. I know, because I was with her when she died.

In a way, we are lucky, because we had years more time with Mom than any of the doctors predicted. During that time, she became a grandmother to Alicia Sofia Wilgoren — the beautiful daughter of Pete and Gloria — something she and we never thought she would live to do.

Mom was a special person. A dedicated nurse by profession for the better part of 40 years. Always part of the PTA or the classroom “Mom.” An active member of Temple Israel in Sharon, MA where she served as President of the Sisterhood and a member of the Board of Directors. A talented crafter, gifted with extraordinary skill in crocheting, knitting and embroidery, among other things. A voracious reader. A loving and caring mother, daughter, grandmother, sister, aunt, great-aunt, cousin and friend.

Those she left behind will never be the same. Nana Ruth David, who just turned 96-years-old last month — her mother and mentor. Her children — me, Pete and my sister-in-law, Gloria — her proudest accomplishments. Her beloved granddaughter, Alicia Sofia — the light of her life. Her siblings and their spouses — Marvin and Jean Neipris, Elsa and Julian Waller and Judy and Charlie Greenbaum — whom she spent a lifetime looking up to and emulating, as well as her brother-in-law, Reed Wilgoren. Her step-siblings, whom she only got to know later in life, but who became an integral and valued part of the Neipris/David family as well as a continued source of support for Pete, Gloria and me. A myriad of cousins, nieces and nephews and great-nieces and nephews, each of whom she cherished. Many special friends, too numerous to name, among them Elaine Drobnis, Sharon Locke, Merle Gordon, Janet Hampe, Helen Pietchel and Carolyn Bunick — all friends for many years, some lifelong. And the many others whose lives she affected as a nurse, a relative, a friend or an acquaintance.

This website — a labor of love which would not have been possible without the expertise of Mike Drobnis — is intended as a tribute to Mom.

There is no cure for pulmonary fibrosis. Unlike other, better-known causes, like cancer or Alzheimer's, there is little research into, funding for and awareness of pulmonary fibrosis. With the help of our generous supporters, we hope to create the Toby Neipris Wilgoren Memorial Fund at the Pulmonary Fibrosis Foundation, allowing for more funding for medical research and advocacy as well as support for patients and families. Please help to ensure that other patients and families do not have to suffer the devastation of pulmonary fibrosis.