For Twenty Years, Group Has Gathered for Support

 “Our Oley support group has been a tremendous help to me in coping all these years, ”says June Bodden, who has been totally dependent on parenteral nutrition (PN) for twenty-three years. “The support of all my Oley friends has made all the difference in my life.”

In March, June and twenty-six others celebrated the twentieth anniversary of the Oley–Tampa Bay support group. Friends, family, and members of the home health community gathered at the H. Lee Moffitt Cancer Center to share their personal histories and their friendships. Several nurses present told about caring for people in the early days of homePN.

Personal Histories

June was diagnosed with, as she says, “what now is known as Crohn’s disease” when she was fifteen. She experienced several years of flare-ups and surgeries. In 1984, “adhesions and gangrene required emergency surgery. The doctor tried me on enteral feedings, but I continued becoming dehydrated. Then, after six months, six hospitalizations, and five surgeries, a Hickman catheter was placed and TPN therapy began.”

“A note arrived with my therapy supplies in November1986,” says June. “It was from Madalyn Goldfarb, a TPN patient. For the first time, I knew someone was out there doing TPN like me! I phoned her immediately. She told me she had been doing infusions for nine years. Then she told me about the Oley Foundation. I had been on hydration and TPN without knowing a soul for two long, lonely years! Madalyn also had an ileostomy and Crohn’s disease. We met in October 1987, when my mother and I went to see her.”

For Nancy Backinger, “Crohn’s disease began in 1968.I was thirty-eight years old.” She continues, “I had seven resections due to Crohn’s [in the 1970s and 1980s], and in May 1988, I had surgery for a major flare-up and was given a jejunostomy. In June 1988, a Broviac catheter was placed and TPN was started. I joined the Oley group in 1990.” Nancy has had a series of infections, with the most recent hospitalization as recent as this February. But Nancy ends this chapter of the story with a smile and a determined, “This story will be continued!”

Diane Wagner was also diagnosed with Crohn’s disease, and later with pseudo-obstruction. But, she says, “the Lord is good. Although I have had lots of physical challenges, the Lord has truly been good to me and carried me through all the way.” She has been on and off parenteral and enteral nutrition since the spring of 1992, and currently is on neither therapy. “But I have lost my appetite (resulting in a big weight loss) over the last few months,” she told the group. “The doctor is concerned about my nutritional status and I may need to go back on some sort of nutritional therapy.”

“My name is Linda Stokes. I am sixty-one years old, ”says Linda, introducing herself to the group. “I have been battling Crohn’s disease since my middle twenties. I was misdiagnosed for about five years before they decided it was Crohn’s: nervous stomach, spastic colon, all in my head, etc. etc.” When Linda was thirty-one, her doctor discovered a cyst on her ovary and she went to have it removed by laparoscopic surgery. “Unfortunately,I woke up in recovery eight hours later with a complete hysterectomy and a section of my bowel removed. The Crohn’s had destroyed my female organs during those years that I was in tremendous pain. That was the beginning of many hospitalizations for resection surgeries and to receive TPN to build myself back up.” In 1986 Linda went on homePN.

“I am so fortunate,” Linda says, “because I have only had three Hickman catheters (in only two sites) since 1986. I have never had a line infection and I am so grateful for that.” “I don’t let PN control my life,” she concludes, “but I know I have to get those thirteen hours every night so I just schedule my activities around this and do anything I want—no problem. I am just so thankful that the PN process can be done at home instead of in the hospital as it was years ago.”

Portia Hutton attended the support group meeting with her husband, Wally. Portia is very succinct with her story: “I had a blood clot in March of 1999, so they removed all but about six inches of my small intestine and about half of my large intestine. I am on my third pump and for over two and a half years have been battling an infection of micro bacterium fortuitum, which they have decided is systemic. I feed for fourteen hours, seven days a week.”

Encouragement, Friendship

Over the years, attendance at the support group meetings has ebbed and flowed. “Linda and I are the only remaining HPNers from our original meeting in 1988,” says June. “Since then, others have come to our meetings and the encouragement and friendships have grown. Meg Cass-Garcia has been our dedicated medical advisor since day one. She also is our historian—she has every meeting notice and LifelineLetter for the entire twenty years!”

A special event at the meeting was the reunion of Nancy Davenport, now the branch manager of Coram in Tampa, and Nina, an exuberant nine year old. Nancy was one of the nurses who worked with Lesley Marino when Nina was an infant.

The group celebrated the twentieth anniversary with photo albums, display boards, banners, and balloons, and was pleased to receive Coram’s Celebration of Life award from Coram representative Linda Gravenstein. June notes, “We were all disappointed that Joan Bishop [Oley’s executive director] got the flu and was unable to join us. Joan, you were greatly missed! Everyone here recognizes the tremendous strength and support we have received from the Oley Foundation and its members. And we hope and pray it will continue for many more years.”

“It has been a privilege and a pleasure to work with June and her group,” Joan responded recently, “whether we are coordinating a response to someone in need, planning an event, or brainstorming ideas. It is courage and determination that serves as the backbone for all that June does and this translates into sheer energy and inspiration to everyone in her path. I cannot think of anything more rewarding than an opportunity to spend another twenty years standing behind June and her efforts!”  

Thanks to the following for their generous support of this event: Meg and Margaret Carter from Moffitt; Coram; InfuScience; and Option Care.