It’s HPN Awareness Week this week: 7 August to 13 August.
Parenteral nutrition, or “IV feeding,” isn’t just for patients in the hospital. We know that. And it isn’t as uncommon as it once was. The Oley Foundation has set aside August 7–13 for HPN Awareness Week to help spread the word that people can survive, and live a full life, on HPN, and to help create understanding of some of the challenges HPN consumers face.
HPN stands for home parenteral (or IV) nutrition. When Judy Taylor became the willing and joyful guinea pig that made this medical technology viable, it was called TPN for Total Parenteral Nutrition. As I wrote in my biography on Judy, she became the first one because all her bowels were surgically removed; today most go on it because their digestive tract doesn’t function properly. They may not get or absorb enough calories and nutrients from food taken orally. Instead, like Judy, they get everything they need — proteins, fluids, calories, fats, vitamins, etc. — from a parenteral nutrition solution, or PN, delivered through a catheter directly into their bloodstream. Efficient.
Like Judy, people on HPN can sometimes be hospitalized due to a complication from the HPN (and they can be quite serious) or because of their disease. But because of Judy, it has long been common for HPN consumers to administer the HPN themselves, at home. HPN allows them to live at home, not be stuck in a hospital, return to work or volunteer, raise their families, and have all that people without bowel disorders take for granted.
The Oley Foundation is an American, independent, nonprofit organization founded in 1983 by Dr. Lyn Howard and her patient, Clarence “Oley” Oldenburg. In 1987, Judy was the first to receive their LifelineLetter Award, given to an adult consumer or caregiver who has been on therapy for at least five years and has demonstrated courage, perseverance, a positive attitude in dealing with illness, and exceptional generosity in helping others in their struggle with HPN. That was Judy to a T.
In a nutshell, the Oley Foundation provides information and psychosocial support to consumers of home parenteral and enteral (tube-fed) nutrition, helping them live fuller, richer lives. Their biggest programs are a bimonthly newsletter, conferences, and a Web site (www.oley.org), with a forum and online learning modules, and a network of volunteers who give their time to support other HPEN consumers. Through these, they provide the latest medical information on home nutrition support, coping tips, and networking opportunities. All of their programs are free to home nutrition support consumers. No matter where you live, if you know of someone who has a bowel problem and is going on HPN, let them know about this wonderful Foundation.
