Frequently Asked Questions
Where did the Foundation get its name?
'Oley' is the nickname of Clarence Oldenburg, who co-founded the Oley Foundation in 1983 with his physician, Lyn Howard, MD. Clarence was on HPN for 18 years after a blood clot cut off circulation to his intestines. He and Dr. Howard created the Foundation as a way of sharing information and support with homePEN consumers across the country, and around the world. Clarence died in 1998. Dr. Howard is the Foundation's Medical and Research Advisor.
What does HPN mean?
Sometimes a person cannot receive enough nutrients from the food they eat because of a severe gastrointestinal (GI) disorder that impairs their ability to swallow food, move food along the GI tract or absorb nutrients from the food. In such cases, home parenteral or enteral (homePEN) nutrition support may be necessary.Both parenteral (pa-REN-te-rul) and enteral (EN-ta-rul) nutrition are in the form of a liquid. Enteral, or EN, is used when the gut is still partially working, but you cannot eat or absorb enough nutrients to stay healthy. EN is delivered directly into the stomach or intestine through a feeding tube. In parenteral, or PN, nutrients are delivered intravenously and the GI tract is bypassed entirely. PN is given through a catheter which carries the liquid directly into the bloodstream, where it is absorbed by the body.
Although PN, EN or both are often given in the
hospital, many people continue the therapy at home, thus the term "homePEN."
Usually this infusion takes place at night so that during the day the
person can be free of tubes and pumps and is able to maintain a normal
life. While some are on homePEN indefinitely, others only need several
months of nutritional rehabilitation and thereafter can maintain
themselves by ordinary food.
Medical problems and diagnoses that can lead to dependence upon
home-infused nutrition therapy are highly varied and include:
- Cancer forms that limit nutirent absorption or impair the ability to eat
- Radiation Enteritis
- Crohn's disease
- Psudo-obstruction and other Motility Disorders (gastroparesis, gastrectomy)
- Congenital bowel disease
- Ischemic bowel disease
- Intestinal tract injuries or traumas that impair the ability to eat
- AIDS
- Stroke (Cerebral vascular accident)
- Chronic adhesive obstructions
- Cystic fibrosis
- Ulcertive colitis
What Do We Mean By HomePEN?
One reader asked about the acronyms used to describe parenteral and enteral nutrition. Following is a list of the acronyms found in Oley materials (and most professional journals). Please note: when possible, our policy is to try to be as accurate as possible, describing a consumer by the specific therapy they use; the widely encompassing "HomePEN" is used when 1. a consumer has not identified which therapy he/she uses, 2. a consumer uses both therapies, or 3. an issue/article relates to users of either therapy.
EN = enteral nutrition
Nutrition, usually taken by tube (must go through at least part of the
digestive tract) in a hospital, nursing home or patient's home.
HEN, HomeEN = home enteral nutrition
Nutrition, usually taken by tube (must go through part of the digestive
tract) in the patient's home.
PN = parenteral nutrition
Nutrition taken intravenously (bypassing the digestive tract) in a
hospital, nursing home or patient's home. You may also see the older
terms TPN (total parenteral nutrition) or HA (hyperalimentation) used.
HPN, HomePN = home parenteral nutrition
Nutrition taken intravenously (bypassing the digestive tract) in the
patient's home.
HomePEN = home parenteral OR enteral nutrition
Nutrition taken either by tube (must go through at least part of the
digestive tract) or intravenously (bypassing the digestive tract) in the
patient's home.
Telling Others About HomePEN
Have you ever struggled when trying to tell a friend about TPN? The National Home Infusion Association website has some tips. Go to the "frequently Asked Questions" section (www.nhianet.org/faqs.htm) and find short answers to: "What is infusion therapy?" "Who provides infusion therapy?" and "Does Medicare cover home infusion therapy?"
Another resource that can help explain tube and IV feeding to loved ones is the video "Choices in Nutrition" available free of charge from the Oley Library.
A third resource used to explain TPN to youngsters is a book entitled "My Central Line". To borrow a copy, contact the Oley office at (800) 776-OLEY; harrinc@mail.amc.edu).
Does the Oley Foundation provide financial support to families in need?
The Oley Foundation is sympathetic to the financial strain homePEN puts on patients and their families. All programs are offered FREE of charge to patients and their families; however, the Foundation is not able to offer financial support. A limited amount of free equipment and supplies are available through the Foundation’s Equipment Exchange program. In addition, a small number of travel grants are often available to offset members’ travel expenses to the Oley Foundation’s annual consumer/clinician conference. More information about Oley, including financial statements, are available in “About Oley.”
Does the Oley Foundation have a speaker’s bureau?
Yes. Experienced patients and caregivers are available to speak about their experiences with tube and/or IV feeding from a personal perspective, as well as about Oley Foundation programs, at your conference, sales meeting or gathering. The Foundation board has representatives from leading nutrition support programs from around the country, who are able to speak on clinical topics and about Oley’s services for patients and clinicians.
How do I contact my elected officials?
http://www.firstgov.gov/Contact/Elected.shtml
How can I find the best physician or team to manage my home tube or IV feeding?
The Oley Foundation cannot
refer patients and families to specific physician or health care institutions.
Research shows that nutrition support patient outcomes are better when they are
managed by teams with the most experience – those who care for a large number of
similar patients. Click here for a listing of the largest nutrition support
centers in the US. Patients who live too far away from these centers for
regular care, may benefit by arranging a consult visit, through their local
physician, on an annual or semi-annual basis. Another sign that your clinician
has special training in nutrition support are the credentials following his or
her name, like CNSC, which means they are a Certified Nutrition Support
Clinician. Click here to read more about
nutrition support certification.