Oley Foundation

Regional Conference Renews West Coast Consumers

Felice Austin, Parent, Regional Coordinator

I discovered the Oley Foundation in 1985, shortly after my daughter, Mariah, went on home nutritional support. In the nine years since then, I have hoped that Oley would hold a major meeting on the west coast. This past November that hope was realized in the form a regional conference.

The day began with presentation by Dr. Marvin Ament of the UCLA Medical Center. Dr. Ament is a dynamic speaker and treated us to the parallel histories of home TPN and the hit movies of the same period. He was very enthusiastic about the continued success of HPN in enhancing the quality of life for anyone who requires the therapy. Dr. Ament cautioned the audience to demand firm and concrete research data before undertaking new or experimental approaches to their therapy.

Next, Dr. Bruce Grill addressed the current issues surrounding pediatric homePEN care. One problem he mentioned is that the majority of HPN children are not under the care of a pediatric gastroenterologist and therefore may not be receiving the specialized care they need. He added that, in his experience, a team approach to health care works best. That team should include a physician, pharmacist, dietitian, nurse, social worker and patient. Finally, Dr. Grill encouraged all consumers to be active in their self advocacy and in the management of their therapy.

The conference continued with an overview of enteral nutrition by dietitian Kerry Stone and an explanation of the pharmacist's role in the management of TPN therapy by Reid Nishikawa (see page 3 for complete article).

During lunch Anne McCormick encouraged us to get involved in support groups and in the community, and suggested strategies for involving others. Afterwards we split into our afternoon roundtable groups. These gave us time to make new friends and catch up with old friends. They were also a time for gathering new "gems" of information. My favorite gems were: How long can a central line catheter last? 17 years and still pumping. How did you manage to keep it that long? Fastidious technique every day. How can I remove Betadine solution stains? Try Biz, but spot check first.

Whenever I am fortunate enough to attend meetings of HPEN consumers, I leave with new knowledge, shared experiences, laughter and renewed confidence that Mariah and I can do this HPEN thing for as long as we need to. I also leave with the deepest respect and gratitude for the health care professionals who give so freely of themselves and their vast pools of knowledge to help make our lives the very best they can be.