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 2016 HPN Awareness Week, August 7-13, 2016

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 The Baxter team celebrated HPN Awareness Week with an event that included clinicians and consumers speaking about life on HPN.

 

HPN Awareness Week 2016

How did YOU celebrate HPN Awareness Week in August? Thank you to all of the Oley members who…


• Wore and shared HPN Awareness Week pins and t-shirts (we distributed 1642 and 100 respectively!);


• Participated in webinars and consumer calls, sponsored by their infusion companies (and thank you to those infusion companies!);


• Talked to friends and family members about things that are important to them, in relation to HPN;


• Submitted press releases to their local media;

 Even Maya, a consumer's service dog, got in the spirit!


• Shared photos for the “Alive with HPN” video;


• Watched and shared the “Alive with HPN” and “It’s Not Rocket Science” videos on Oley’s YouTube channel or Facebook page, and the PN Down Under video, also on YouTube (visit www.youtube.com/TheOleyFoundation). Thank you to the Leibee family and Winn Brewer for producing the “It’s Not Rocket Science” video;


• Submitted t-shirt design ideas;


• Participated in discussions through the Oley forum, or Facebook or Twitter;


• Donated to Oley, in honor of HPN Awareness Week.


Oley Foundation staff and members participated in a webinar for the TSA workforce about HPN, to help them understand the unique needs and concerns of HPN consumers. The webinar was recorded and is available to all TSA employees.


Lastly, Bioscrip and Baxter both held large fund raisers and awareness events for their employees, where consumers and clinicians were invited to speak about life on home parenteral nutrition.
Our special thanks to Baxter for sponsoring HPN Awareness Week.


Save the Dates


HPN Awareness Week, August 7–11, 2017


LifelineLetter, September/October 2016

 

What HPN Means

Past HPN Awareness Weeks have raised discussions about the term "HPN" and what it means, both to you as individuals and in the broad sense. “HPN” stands for “home parenteral nutrition.” It is parenteral nutrition (a nutritional solution delivered intravenously, through the bloodstream) administered at home. Parenteral nutrition is also commonly known as “total parenteral nutrition,” “TPN,” and “hyperal” or “hyperalimentation.”


Why do we use “HPN” instead of “TPN”? We no longer refer to it as “total” parenteral nutrition because the solutions, although life sustaining, do not contain all of the nutrients that are present in our diets. Another reason we do not refer to it as “total” PN is that for many consumers it is not their sole source of nutrition. They may be taking some food by mouth or perhaps supplemental tube feeding.


Further, we want to acknowledge that the situations so many face when they have PN at home, vs. in the hospital, can be very different. We also hope to convey the very important message that people are living their lives at home on PN, and that if PN is a necessary part of your present and future, there are resources available to help you.

 

There are lots of ways to say it besides “HPN,” including “home PN” and “home TPN,” and we appreciate the insights and suggestions members have offered on the terms and how we use them. It’s an important and helpful dialogue.


On the Oley Facebook page, one mom wrote what “HPN” means to her: “To me HPN includes those who rely on IV nutrition for all their needs (TPN) and those who use IV nutrition to meet some of their nutritional needs, but may also eat or do tube feeds...it also implies that this is a way of life at HOME, which is huge for my daughter!”

 

What’s YOUR Alive with HPN story?

“At first I found it difficult to schedule my feedings around any kind of social activity, but now if I have something planned during my normal feeding cycle, I just put on my backpack and go. People hardly ever even notice it.... TPN has saved my life—made it possible to have a quality of life that I wouldn’t have had without it. I am happy to be ‘Alive with HPN.’”

—Candace, Oley-Inspire Forum


Updated November 20, 2016

more Calendar

2/6/2017 » 2/10/2017
Feeding Tube Awareness Week

2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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