Bonnie Arkus, RN, lost her mother to heart disease in 1986, 14 days after a heart attack she'd suffered on Mother's Day. Cardiac catheterization had revealed substantial blockage of the left main coronary artery, and physicians insisted that her mother needed a coronary artery bypass, giving her a 99% chance of survival. But her heart stopped as she was wheeled from surgery to the ICU. She died four days later.
Already a critical care nurse for 15 years, Arkus went looking for answers. Physicians couldn't say why her 60-year-old mother had died; Arkus found the paltry information available hard to believe. "I found out after her death that there was little known about women and heart disease and why they died at a much higher rate than men," says Arkus, who spent the next two years researching the topic.
Arkus began a quest to educate others on the rarely-documented plight of women with heart disease, change the way data on outcomes in women are collected, and improve the care women receive. It began with phone calls and letters, and in 1988 Arkus went to Washington, DC, to confer with congressional leaders and lobbyists, as well as the National Organization for Women, which later met with the National Institutes of Health on the matter. The Office of Research on Women's Health was created shortly thereafter.
From 1987 to 1991, in addition to a full-time job as a visiting nurse, Arkus worked with the American Heart Association (AHA) to start its southern New Jersey chapter, and in two years she raised almost $14,000 for research on women's heart disease. But the AHA's bylaws prevented it from dedicating Arkus's donation solely to one area of interest, so in 1992 Arkus launched the Women's Heart Foundation (WHF), and in 1999 she devoted herself full time to the WHF, as its executive director.
In 13 years the New Jersey organization has established programs to raise awareness among women about heart disease. Its "Women's Well Days" program teaches women about sex-specific differences in heart disease symptoms and how women can get more involved in their health care. Fourteen hospitals statewide sponsor this program, and it's also offered at several Curves fitness centers. In the next year, the WHF will also start the "Registered Nurse Volunteer Program," in which nurses are trained to oversee Women's Well Days in various settings.
Addressing such risk factors as obesity, sedentary lifestyle, and poor nutrition early in life, the WHF promotes fitness in adolescent girls through its Teen Esteem program. Arkus says that the program has been a success at Central High School in Trenton, New Jersey, where it's offered as an alternative to gym classes. The program also helps parents to get more involved with menu options in their children's school. Says Arkus: "We're finding risk factors in these youngsters-like high blood pressure; one youngster had a blood sugar level over 400."
The money to support these programs continues to come, in part, from the WHF's fundraising efforts, like the annual "Run for Your Heart" walk and run, and from donations. With Ohio and Florida already extending invitations, new chapters of the WFH may soon pop up in other states.
To find out more about the Women's Heart Foundation go to http://www.womensheart.org.
When Susan Leigh, BSN, RN, talks about cancer, people listen. A three-time cancer survivor, Leigh is a founding member of and spokesperson for the National Coalition for Cancer Survivorship (NCCS), an organization started in 1986 to address the needs of a growing population of people living through cancer.
In 1972 the recently graduated, 24-year-old nurse had returned home after a year in Vietnam when she was diagnosed with Hodgkin disease. "I was wondering if I still wanted to be a nurse," Leigh says. "I was trying to decide what I wanted to do with my life when I found out I was sick."
After almost a year of tests and treatment and another year of recovery, Leigh was ready to go back to work, choosing oncology nursing. But she soon discovered that her experiences as a patient had altered her perceptions of how the medical system was handling long-term survivors of cancer. She was worried about what was happening to cancer patients after they were treated and sent back to their lives; her colleagues labeled her a "hypochondriac" and "obsessive."
When a friend asked Leigh to fill in for her at a networking meeting for cancer survivors in Albuquerque, New Mexico, she jumped at the chance. "Even though I'd been an oncology nurse, I felt I just had no voice," Leigh says. "I kept wondering if other long-term survivors were living that way."
Out of that meeting of 25 survivors, the NCCS was launched-with funds from its founding members' own pockets-and following a move to Washington, DC, eventually became the oldest survivor-led advocacy group in the nation. In the NCCS, Leigh found the peer support she had been looking for as an oncology nurse. More important, she found her voice, speaking on behalf of the organization at meetings addressing survivorship.
Because of her own experiences living day to day as a survivor, Leigh proved a valuable asset to the NCCS, even when facing two new bouts of cancer in the next 20 years. At the end of 1990, she discovered a lump in her breast. A day after finding the lump, she was in her physician's office. Because her past cancer treatment had included radiation to her chest, Leigh could not be offered the traditional lumpectomy-radiation therapy. After months of deliberation, Leigh opted for a bilateral mastectomy.
In 1995 Leigh returned to her physicians with bladder problems stemming from a fractured pelvis she had sustained in a taxi accident. This time she was discovered to be in the early stages of bladder cancer. Leigh underwent treatment for the next three years.
Today, the 57-year-old is recognized as one of the country's leading consultants on cancer survivorship. She uses her influence on behalf of the estimated 9.4 million cancer survivors living today, a statistic difficult to track since no organized follow-up data are available. Among Leigh's goals (and those of the NCCS) are the provision of continuing care to long-term cancer survivors and a formalized system to collect data on the health problems specific to them.
"That's where I think the nursing profession has the advantage; we can really be a help with long-term follow-up." she says.-Loretta Hunt
The Faces of Caring: Nurses at Work
A photo exhibition from the American Journal of Nursing May 6-May 31, 2005
Cosponsored by the Division of Nursing, Steinhardt School of Education, New York University, and made possible in part by funding through Johnson & Johnson's Campaign for Nursing's Future
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