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
- Pseudo-obstruction and other Motility Disorders (gastroparesis, gastrectomy)
- Congenital bowel disease
- Ischemic bowel disease
- Intestinal tract injuries or traumas that impair the ability to eat
- Stroke (Cerebral vascular accident)
- Chronic adhesive obstructions
- Cystic fibrosis
- Ulcertive colitis
- Mitochondrial Disease
- ALS/Lou Gehrig's Disease
- Parkinson's Disease
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.
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.
Basic Terminology: What We Mean When We Say...
We recently had a reader point out that the Oley newsletters are full of terms and abbreviations that are new and unfamiliar to him—and he’s certainly not the first one to ask for clarification. Here, then, with thanks for this reader’s feedback, are some of the basic terms we use and a little bit about each:
Parenteral nutrition (or PN) is delivered into the bloodstream through a central venous catheter (CVC), which is also sometimes referred to as a central line or, as you’ll see in the article on thrombosis on the cover, a central vascular access device (VAD). When this nutrition therapy is administered in the home, we call it homePN, or HPN for short.
Parenteral means “outside the intestine.” Patients who use this therapy are fed a specially formulated solution through their central lines. The solutions contain nutrients that are already broken down into very simple or elemental parts that can be used by cells in the body. We sometimes use the terms intravenous feeding or IV feeding to denote parenteral nutrition.
Enteral nutrition (or EN) is delivered through a gastrostomy tube (G-tube) or a nasogastric tube (NG-tube) into the stomach (gastric = stomach), or through a jejunostomy (J-tube) into the intestine (jejunum = part of the intestine). G- and J-tubes enter into the stomach or intestine through a surgically formed opening, called a stoma. An NG-tube goes through the nose and down the esophagus into the stomach. Sometimes we call enteral nutrition tube feeding. Most people use special formulas for tube feeding, though some people create their own formulas/recipes with food and a blender. Note that PN solutions and EN solutions are very different from one another and are in no way interchangeable.
For those on home enteral feeding, we use the term homeEN, or HEN for short. Sometimes you’ll see the term homePEN (or HPEN)—that’s for those who use both PN and EN, or when we want to include both therapies in the discussion
And lastly, why do we so often use the term “consumers” instead of “patients” in the newsletter and in our discussions? Oley members have told us that, once they have mastered the “ins and outs” of the therapy they receive they would rather not be considered patients. As health care consumers, they prefer the term “consumers” and, as time passes, they insist on becoming “partners” with their health care providers.
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; firstname.lastname@example.org).
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?
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.
What were the early days of HPN like?
Procedures, public opinion, finding information and support were all very different in the early days when parenteral nutrition was first created and patients started bringing into their homes. Here are some links to articles, videos and books that talk about those pioneering times.
Lifeliner: The Judy Taylor Story -- a book that tells the story of one of the first patients sent home on HPN
Lee Koonin, the inspiration for and co-founder of The Lifeline Foundation
How It All Began -- a story of the early days of HPN
A blog about Lee Koonin
A video of Lee Koonin promoting HPN in the early days on television
Lee Koonin's Memorial in the LifelineLetter
Crossing the Bridge into the 21st Century -- an article that outlines the history of HPN
Please note the second half of the article that deals with "Where We Are Now" and "Looking Ahead" is describing current thought in 1997.
My 25 Year History with HPN -- the story of long term consumer, Davria Cohen, written in 2007
Collective Wisdom -- an article that includes stories from three long term consumers about their early HPN experiences
Last updated: February 20, 2013