- Meet Consumers/Patients
|2008 Oley Award and Scholarship Winners|
2008 Oley Awards and Scholarship Winners
LifelineLetter Annual Award
In Honor of Nutrishare, Inc., Oley Platinum Partner
At our annual conference in San Diego, the Oley Foundation was pleased to present June Bodden with the LifelineLetter Annual Award, which is given to recognize a homePEN consumer or caregiver for his or her courage, perseverance, positive attitude, and generosity in helping others in their struggle with homePEN issues.
June, who has been PN-dependent for twenty-three years, has been an Oley Regional Coordinator volunteer since the early 1990s. In that capacity she has reached out to many who were looking for support and answers. Beyond that, on Tuesdays June inactive with her church Bible study group; on Wednesdays she volunteers with Meals on Wheels (and has for eighteen years!); and on Fridays she helps at her local food pantry.
June has been very active with the Oley–Tampa Bay Area support group since it began in 1988. She stepped-up to lead the group about ten years ago, and since then has carefully planned meetings and located materials that might be of interest to the group or other PN consumers. Twenty-seven people, including consumers, caregivers, and clinicians, gathered in March to celebrate the group’s twentieth anniversary.
Diane Wagner, a consumer who has also been part of the group since 1988, says, “June is in contact with me and others by e-mail, snail mail, or phone. She makes an extra effort whenever someone she knows is in the hospital or sick at home. She spends hours planning our group meetings, contacting new patients on PN, and keeping us informed of new advancements in Oley and PN-related areas.”
Through the years, June has frequently given of her time to answer calls to one of the consumer/caregiver toll-free phone lines Oley offers. In fact, she’s “(wo)manning” a line in September. Don’t hesitate to call her.
As Oley Consumer Advocate Don Young says, “June is a hard worker who gets the job done. If she were a baseball pitcher,” he adds, “we would say, ‘She still has her fastball.’”
Oley Foundation Child of the Year
In Honor of NutriThrive, Oley Golden Medallion Partner
Nina Marie Marino
At the conference, nine-year-old Nina Marino was presented with this award for her positive attitude in dealing with her illnesses and therapy, and for the inspiration and encouragement her attitude offers others. “Nina does not let anything get in her way of enjoying life,” says her mom, Lesley. When she received the award, Nina commented that one of her goals was to make people laugh. Another, more long-term goal, was to be a Montessori teacher.
Nina has had a G-tube since she was four days old, and has been on and off parenteral nutrition several times. Nina is missing most of her esophagus, one lung, and several centimeters of intestines, and has three heart defects. She has undergone seventy-three surgeries. Yet in February, she participated in her first national ice-skating competition. She won second-, fourth-, and fifth-place medals. One day, Lesley says, Nina wants to skate with the Disney on Ice company.
A Marino family friend, whose son, like Nina, has extensive medical issues, says Nina has helped them to see the positive side of life. “Nina is a compassionate, happy, and energetic young lady,” she says. “Nina has taught us that in spite of all the challenges she has been faced with, the most important part of life is living it to the fullest. She has also taught us acceptance. She seems to thoroughly understand all her medical issues and accepts them with no self-pity.”
Nina and Lesley visited the Oley–Tampa Bay Area support group this spring as the group celebrated its twentieth anniversary. “Nina’s winsome personality had our hearts in just a few minutes,” says Oley Regional Coordinator June Bodden. “Everyone was very impressed with the knowledge this pint-size child possesses and what an energetic, full-of-life example she is.”
Celebration of Life Award
In Honor of Apria Healthcare/ Coram Inc., Specialty Infusion Services, Oley Platinum Partner
Jerry Fickle has been on parenteral nutrition (PN) since 1981, and in that time PN hasn’t stopped him from doing the things he loves. Jerry lives life to the fullest, and it’s because of this that he was honored with the Oley Foundation Celebration of Life Award at the Oley annual conference.
Sharon Woods, MSN, RN, CNSN, who serves as one of Jerry’s homecare nurses, says, “Jerry started on HPN in the days when consumers had to go to the hospital pharmacy and pick up all their supplies themselves—a daunting task. This included the glass bottles of amino acids, dextrose, and lipids. It was an incredible time for the first HPN consumers. Jerry took to this problem with perseverance and a positive outlook.” Of course, not only did early consumers like Jerry have to pick up their own supplies, they had to learn to mix them as well. At that time, Jerry was working full time, teaching physical education in elementary schools, and infusing at night.
Jerry is now retired, which gives him more time to devote to being a Purdue fan. During football season you are likely to find Jerry and his wife Dotty at a Purdue game, occupying some of the best seats in the stadium. In the off-season, Jerry and Dotty are likely tobe traveling. In late June of this year, Jerry and Dotty went on a cruise to celebrate their fortieth wedding anniversary.
“Jerry is an inspiration to any one of us,” says Sharon. “His chronic health problems/challenges have not consumed his life or prevented him from living life to the fullest even though he infuses his HPN six times a week.”
Lenore Heaphey Grassroots Education AwardSponsored by Kimberly-Clark, Oley Blue Ribbon Partner
Ann Weaver is always available to reach out and educate others about Oley, and about what it means to be dependent on enteral or parenteral nutrition or to care for a child on homePEN. She was chosen to receive the Lenore Heaphey Grassroots Education Award this year for her work organizing and participating in several education programs.
Ann has had direct experience with homePEN since her son was born with Hirschsprung’s disease in 1994. She has served as an Oley Regional Coordinator volunteer since 2001, and as such has generously offered support and information to other consumers and caregivers. In February, Ann, her son Tim, and Oley Trustee and HPN consumer Sheila Messina, RN, MA, spoke as part of an Oley panel at Clinical Nutrition Week in Chicago. Organized by the American Society for Parenteral and Enteral Nutrition, Clinical Nutrition Week brings researchers and clinicians from around the world who specialize in the field of homePEN together to share ideas. Ann, Tim, and Sheila spoke on what it means to be a homePEN consumer and/or caregiver, offering clinicians a glimpse into consumers’ and caregivers’ day-to-day routines and concerns.
For several years Ann has also helped educate pharmacy students by sharing with them the consumer’s and caregiver’s points of view on homePEN. Anna Nowobilski-Vasilios, PharmD, BCNSP, writes that Ann has helped her teach a Home Infusion Therapy elective at Midwestern University’s Chicago College of Pharmacy. “Her insight and candor,”says Dr. Nowobilski-Vasilios, “have contributed significantly to the education of future pharmacists and to their development of compassion for the individuals whom they will serve once they graduate and begin practicing.”
Nan Couts Award for the Ultimate Volunteer
Coordinated by Judy Peterson, RN, MS
Mark DeLegge, MD
Mark DeLegge, MD, has demonstrated a willingness to give of himself—above and beyond his regular work hours—to educate and empower homePEN consumers and to improve their quality of life. For this, Dr. DeLegge was presented with the Nan Couts Award for the Ultimate Volunteer at the Oley annual conference.
“Mark DeLegge is a gastroenterologist with a huge heart,” says Dr. DeLegge’s friend and colleague Carol Ireton-Jones, PhD, RD. “He takes care of patients on home parenteral and enteral nutrition clinically, but also personally and with TLC.” Dr. DeLegge is open to speaking with homePEN consumers one on one, and listens and offers support. He is an active member of the American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.) and serves on many A.S.P.E.N. committees. Earlier this year, Dr. DeLegge received the 2008 Outstanding ContributionNutrition Physician Award from A.S.P.E.N. and was elected to A.S.P.E.N.’s research foundation board.
A nomination for Dr. DeLegge cites how he “makes tough medical jargon easy to understand” and, in speaking to consumers at Oley conferences, how he “takes time with each individual as needed to make sure their questions are answered.” Dr. DeLegge also trains new physicians, nurses, dietitians, and pharmacists in nutrition support. Hopefully he instills in them respect for the qualities that are regarded so highly in Dr. DeLegge.
Kyle R. Noble Scholarship
Coordinated by Donna & Richard Noble
Kyle R. Noble’s enthusiasm for life affected many positively, and he is remembered widely with affection and admiration. Kyle passed away in 2006 at the age of eight. In 2007, the Noble family established the Kyle R. Noble Scholarship to recognize others who share the admirable qualities for which he will be remembered. In 2007, the scholarship was awarded to Alicia Hoelle. This year’s recipient, announced at the Oley Conference in San Diego, is Mariah Abercrombie.
“Living with and battling a chronic illness has made my life more fulfilling,” says Mariah. “It has pushed me to strive to accomplish more, although maybe not at the pace I would have imagined for myself or preferred. I’ve learned more about my strengths and weaknesses than many my age. I’ve been able to meet others who may not have entered my life otherwise and learned a great deal from them. Simply, I’ve become a better person because of my illness.”
Mariah was diagnosed with pseudo-obstruction syndrome and put on parenteral nutrition (PN) at the age of two and a half. At that time she also received a gastrostomy tube (G-tube) anda jejunostomy tube (J-tube). “Despite all my health problems and the struggles my family faced,” Mariah relates, “I enjoyed a normal childhood....Is hooking up to IVs every night and taking a twenty-five pound IMED machine on family vacations normal? For my family it was. We learned how to accommodate my medical needs and live as ordinary a life as possible.”
Since then, Mariah has undergone additional surgeries and faced complications. Yet, as a nurse involved with Mariah’s care states, “Despite a severe and chronic medical condition, which requires a tremendous amount of day-to-day management, Mariah has persisted in pursuing her educational goals at the college level.”
Mariah would like to pursue a bachelor’s degree in psychology or social work. She plans to use the scholarship as she continues her studies at the University of Las Vegas. “Everyone has their struggles,” says Mariah. “It only makes sense to use our struggles to help others and better ourselves. I only hope that I am able to keep helping others, as I have been so graciously helped by so many in my life.”
Nutrishare Home TPN Research Prize
Sponsored by Nutrishare,Inc., Oley Platinum Partner
The Nutrishare Home TPN Research Prize, sponsored by Nutrishare, Inc., was established in 2007 to encourage clinical studies focused on improving the quality of life for homePN consumers. In 2008, prizes were awarded to the following individuals:
Cindy Hamilton, MS, RD, LD,CNSD
This study was designed to determine what factors might predispose patients to HPN-associated complications. The study concluded that complications may be reduced by either changing the process of care or by providing additional training to health care professionals, patients, and caregivers. The data provides a benchmark to test these strategies.
Marianne T. Opilla, RN, BSN,CNSC
Thrombotic catheter dysfunction is a commonly reported complication for central venous access devices. Alteplase, a fibrinolytic agent, has been shown to be safe and effective in restoring catheter patency; it may be administered therapeutically for occlusion or routinely as a prophylactic measure. The aim of this study was to compare methods of usage, as well as determining safety, efficacy, and incidence of catheter salvage in HPN patients using self-administered alteplase.
Geert Wanten, MD
Radboud University Medical Centre has had ongoing experience with HPN for 37 years and has remained unique in the world by using arteriovenous fistulae (AVF) for vascular access in HPN. The goal of this research was to evaluate complications related to AVF-use in comparison with central venous catheter (CVC) use. The study concluded that AVFs have a higher rate of initial failure, but once functional, the bloodstream infection rate is much lower than during CVC use whereas the occlusion rate is not increased. Considering the very low rate of infections, the study concluded that AVFs are a valuable alternative to CVCs in the administration of HPN.
Contact the Oley office for more information on these studies.
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