Oley Regional Coordinator Network Growing Strong

The Program

Regional Coordinators (RCs) are vital to the Oley Foundation’s outreach efforts. These volunteers serve home parenteral and enteral nutrition (HPEN) consumers and caregivers in a variety of ways—from chatting with others on Oley’s online forum, to visiting HPEN consumers in the hospital, to answering questions via Oley’s toll-free phone lines. They may organize local support groups; reach out to clinicians in their area; represent Oley at professional meetings; or provide in-service educational sessions to companies involved with nutrition support. Lately the program has expanded to include several foreign affiliates. These volunteers are great resources for Oley members who want to travel, or who want to know about life on HPEN in another country.

Regional Coordinators sign up because they want to help. Remember them when you want to discuss your diagnosis or therapy with another HPEN consumer, when you’d like someone to talk to or to listen, or if you have suggestions for local activities. Find a complete list of RCs, with brief bios, at www.oley.org/volunteers.html or call us for a list (800-776-OLEY).

As volunteers and HPEN consumers or caregivers, RCs may sometimes be unavailable. If you are having trouble reaching an RC, please let us know and we’ll see if we can help (call 800-776-OLEY). Please be aware of time differences if you call someone in another time zone.

New RC Volunteers

Kailee Brown, a former recipient of the Oley Foundation’s Kyle R. Noble Scholarship, is currently a senior at Dominican University of California in San Rafael. She will graduate with a bachelor of science in registered nursing in May 2012. Kailee has gastrointestinal (GI) dysmotility and has lived with GI problems most of her life. She is currently on home parenteral nutrition (HPN), but she has also had experience with home enteral nutrition (HEN).

Kailee says, “When I started on HEN and, later, HPN, I had a lot of different feelings and questions regarding life with a tube. I turned to others who were living similarly for support and advice, and it really helped me to cope and adjust to my new lifestyle. As a Regional Coordinator I hope to use my experiences to offer that same support to others.” Kailee can be reached at (415) 246-6603 or kaileeebrown@hotmail.com

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Marek Lichota, of Cracow, Poland, has joined the Oley RC network as a foreign affiliate. Marek has been on HPN since 2008 due to short bowel syndrome and Crohn’s. Marek attended the 2011 Oley conference in Minnesota, where he says he “started his adventure with Oley.” Marek would like to share his knowledge of nutrition and inflammatory bowel disease (IBD) with other patients, in Poland and elsewhere.

Marek says, “I would be satisfied with being able to propagate the issue of parenteral and enteral nutrition through the organization of conferences, meetings, and via a Web site.” In 2005, he started a branch of the Polish Association for IBD Patients in the southern region of Poland. Last year he became a member of the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) Youth Group Board.

“Privately,” Marek says, “I’m a happy husband and the father of five-year-old Julia, who brings a lot of joy and strength to my life. When it comes to nutrition, at the beginning it was pretty tough for me to get used to HPN, but after some time I accepted it fully and now in every moment of my life I try to prove that living on HPN doesn’t exclude me from living a quite normal life.” Marek works for a global credit insurance company as a marketing specialist. He would love to hear from you—especially if you plan on visiting Poland. He can be reached at marek.lichota@gmail.com or +48 600 744 882 (please be conscious of time differences).

Mary and Bob Smithers live in Gainesville, Florida. Mary was diagnosed with idiopathic gastroparesis in 1985. In 1998 her stomach no longer emptied enough for her to sustain herself and she began HPN. Infections were a problem, however, and Mary had a G-J tube placed for tube feeding. She currently feeds with the G-J, using the G portion to vent her stomach. To fend off dehydration, she gets a liter of lactated ringers each night (through a port), with multivitamins and trace elements added three times per week.

Mary has experience with PICC lines, various central lines, and a port. She has also had a surgically placed J-tube (removed in March 2011 due to a fistula at the site) and has a gastric stimulator (originally placed in 2001 and replaced twice).

In 1999, Mary retired on disability from her job as a speech therapist at a special needs school. Bob is a retired high school math teacher and is retired military; he served three years on active duty and more than twenty years in the Florida Army National Guard. Bob is caregiver to Mary, and Mary and Bob are caregivers to Bob’s 91-year-old mother, Kay, who has cerebellar ataxia and lives with them.

Bob and Mary note they’re available via e-mail, telephone, or snail mail, and are currently involved with the Oley Tampa Support Group, which was guided by the late June Bodden. They hope to develop a Gainesville area group as well. They can be reached at (352) 331-8490; mcwsmithers@yahoo.com (Mary) or smithersb@yahoo.com (Bob); or 2843 SW 92nd Terrace, Gainesville, FL 32608.
 

LifelineLetter, November/December 2011