Notes on a panel held at the Annual CFRI Conference
Five adults with cystic fibrosis shared their life stories. They discussed their jobs, relationships, treatment regimens, and diagnoses. The panel included Donald Perreault, a five-time Boston Marathon runner from Massachusetts, Barbara Palys, writer and lecturer, and International Association of Cystic Fibrosis Adults (IACFA) Chairperson also from Massachusetts, Isa Stenzel, graduate student at the University of California at Berkeley, Julie Desch, M.D., a pathologist at Kaiser Permanente in San Francisco and member of the CFRI Board of Directors, and Charlie Stockley, a Media Sound Specialist and drummer living in San Francisco.
When asked what they tell people about their disease, one panelist said he doesn't hide his disease from others but he doesn't bring it up. Others panelists said that they only tell their closest friends. Two panelists said that while growing up, everyone knew about it, but they, personally, never wanted to talk about it.
Everyone indicated that their parents treated them as normally as possible. One panelist said that her parents "let her find her way." Parents of our panelists generally trusted them to know their limits and felt secure in the knowledge that they could take care of themselves. One panelist felt that his mother had trouble letting go of his care even when he was ready to assume the responsibility for himself.
For Charlie, it happened when he moved out of his mom's house at the age of 20 and had to take responsibility for his life. Once that part of his life was under control, he could focus on his career, his music and his drumming. He studied broadcasting and communications arts at San Francisco State, and after graduation, he fell into an internship at a recording studio and ultimately was promoted to engineer. He credits his mother with instilling in him good health habits and he stays active and exercises when he can. He does not think of himself as different from others. He would never let CF stop him from planning for the future. In his spare time he works with homeless children in San Francisco. He described it as a humbling experience, and he has come to appreciate how much harder life could have been.
Isa became aware of her fears at memorial services for friends. Hospitalized frequently between the ages of ten and 16, she had to learn ways to keep her fears from controlling her. She never thought she would survive into adulthood, but with medical advances, her health improved enough for her to attend Stanford University as an undergraduate. She was even able to travel to Japan for a year with her sister. Currently, she is studying at the University of California at Berkeley and thinking of entering social work. Although she had a full-time job during the summer working with AIDs patients, she had little time to do anything like socialize and is looking forward to never working full-time again. Isa stressed that psychological well-being really helps her stay healthy, so she works on her attitude. But she also credits her family. She says her biggest blessing is having a twin sister who also has CF. They help each other with their treatments. And she noted that she has a very supportive family and boyfriend.
Julie faced her fear when her sister with CF died. She made the decision to attend school in California (she was living in Nebraska) even though her sister was dying. She felt she had to make a decision that was best for herself in the long-run. When her sister died at the age of 31, Julie was frightened that she was going to die early too, even though she's generally been healthy throughout most of her life. She received her medical degree from Stanford University and completed her residency. Currently as a pathologist, she feels some sense of control in the study of diseases. After working at a CF research lab and enjoying it, she became involved with CFRI again, serving on the Board of Directors and heading up the CF Conference Committee.
When she was diagnosed at the age of 24, Barbara had a grand mal seizure which frightened her into taking responsibility for her health. In search of knowledge, she read ancient medical tomes that told her that she should have died already. It was one of the most fearful times of her life. So she went in search of people like herself. She discovered a group called the International Association of CF Adults (IACFA). After corresponding with the then editor, she started writing for their newsletter. In 1987, she became the editor and was elected to the board. By 1993 she became the organization's Chairperson. While still fearful of premature death she has gone on with life. She is happily married and has been for 13 years. She considers herself generally healthy but does experience some difficult times with her health.
After his sibling died of CF, Donald thought he was going to die next. At the age of 16, his attitude took a turn for the worse. He drank and started taking drugs. For ten years, his life was hell. His family and friends were fed up with him and he just didn't care. Then he met with a counselor who convinced him to go to Narcotics Anonymous. Once there, he started attending AA on a regular basis. This experience turned his life around. He began to realize he had something to live for. He met a wonderful woman and they married. He also started running and exercising regularly and took better care of his health. A friend from a clinic organized a group to run in the Boston marathon and he joined. Now he's run a total of five races. The running has helped him to build his self-esteem, keep himself healthy, and improve his attitude.
Panelists advised the audience not to let CF control your life; instead, control your CF. Health comes first. Establish your health routine, follow it, then do whatever you want to do. Talk to people (family, friends, therapists, doctors) about fears and concerns. And finally, because the less-sick CF sibling can feel so much guilt, one panelist urged parents to comfort their healthier CF child or children. Their words of advice can best be summed up by the title of the panel: don't let your fears get in the way of your dreams.
The panelists were all diagnosed at birth, with the exception of Barbara Palys who was diagnosed at the age of 24 and four of the five panelists were generally healthy throughout their childhood.
All of the speakers work full-time and/or attend school and stressed the need to make time to do their treatments. They recommended establishing a good health regimen to be able to stay healthy while keeping up with busy schedules. Treatment regimens varied, but generally included Proventil (aerosolized, inhaler or oral form of bronchodilator), Pulmozyme, Tobramycin (aerosolized), some form of chest physiotherapy (percussion, Flutter, IPV, ThAIRapy vest or exercise), taking enzymes with foods, good diet, high calorie shakes or other food supplements, any other necessary oral medications, and washing and disinfecting all medical equipment weekly. For one panelist, having an IV treatment six months ago made her realize that she had to start taking her treatments seriously. Some panelists admitted to being non-compliant, some more frequently than others, not always taking their pills or doing their exercise, but all agreed that a consistent schedule for treatments was essential.
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