Oley Southwest Regional Conference
On a sunny Southern California day, about eighty Oley Foundation members met in the beautiful new Ronald Reagan Medical Center at UCLA for a day of friendship, information gathering, crafting, and fun. Laurie Reyen, RN, MN, served as the moderator and major facilitator for the meeting.
In the A.M.
The first speaker of the morning, Marvin Ament, MD, from UCLA, discussed where we started, where we have been, and where we are going with parenteral nutrition (PN). Doug Farmer, MD, also from UCLA, followed with a discussion of intestinal failure centers and transplants. Khiet Ngo, DO, from Sacred Heart Children’s Hospital, discussed quality of life for parenteral and enteral consumers, which coordinates and corresponds with the PN quality of life survey that Oley has posted on the Web site.
During the morning session, the twenty children who attended were entertained by volunteers from the Painted Turtle Camp. As soon as you saw the colorful quilts that represent the welcoming spirit of Painted Turtle, you knew the children would be well cared for. They were entertained with games, arts, crafts, and stories. During the day, they made stuffed animals, and at lunch they were entertained by Pun the magician.
In the P.M.
Everyone stopped at noon for a fleeting respite and delicious boxed lunches. Many people made new friends. For some, it was their first time at an Oley conference and their delight at finally meeting other people who lived lives similar to theirs was emotional to witness. Before you could catch your breath the afternoon sessions began.
In the afternoon, conference attendees selected different round table discussions. Some listened to questions and answers about medical insurance from Jody Strain, a home healthcare reimbursement specialist. It was a very pertinent topic in this day of changing healthcare. Jorge Vargas, MD, addressed a large crowd during his session on enteral feeding, while Marianne Opilla, RN, CNSC, gave an inspired set of sessions on catheter care and introduced some new products (see “Bright Ideas: Keep Caps Clean” on right). Lily Wu, RD, CNSD, presented sessions on diet and short bowel syndrome. Lorraine Shimahara, PharmD, answered the questions everyone wanted to ask a pharmacist, and the UCLA social worker, Kanela Artavia, MSW, presented sessions for young adults on transitioning to independence and later a session for caregivers and parents. People were reluctant to leave these round table sessions because they were getting so much information.
Many Thanks for the Support
The support from the UCLA staff and hospital was invaluable. The group felt like it would be a great benefit if this mini conference could be held annually.
Our thanks to the conference sponsors: Abbott Nutrition, trick or treat bags; Big Dog Impressions, childcare activities; BioScrip Infusion Services, childcare/transition session for young adults and speaker support; Brooks Healthcare, breakfast buffet; Coram Specialty Infusion Services, speaker support; CSL Behring, LLD, general conference support; Emmaus Medical, boxed lunches; Johnny’s Animaland, childcare activities; Nutrishare, gift cards and speaker support; The Painted Turtle, childcare activities; Ronald Reagan UCLA Medical Center, speaker support; and Sacred Heart Children’s Hospital, speaker support.
Our thanks, too, to the many volunteers who helped make this program successful.
LifelineLetter, November/December 2010
2010 Regional Conference in LA Very Helpful
“This was the first time I had attended any conference since I became sick and needed to go on PN (parenteral nutrition) permanently in 2002. I was very pleased and appreciative of every aspect of the conference. Drs. Ament, Farmer, and Ngo made excellent presentations that were very informative. The information on new trends and future possibilities in treatment—such as the omega 3 lipids to help avoid liver failure, especially in children, and possible surgical interventions—was all new to me.
“The breakout sessions were also very good, and I picked up helpful tips from Marianne Opilla’s program on catheter care which I put to use right away. I’d been having trouble with irritation and itching under my dressing, and she suggested I get a different kind. I talked it over with my supplier and now have one that is much better!
“Most of all, the conference provided the opportunity to talk with other patients. It gave me a broader perspective on how people deal with their need for parenteral nutrition, whether adults or parents caring for their children, and it was very heartening and helpful to be able to talk about day-to-day issues with others in my situation.
“Thank you also for all the care shown to the children attending the conference. Thank you to all who made this conference possible, and I hope there will be other conferences in S. California in the future.”