Practical Tips for Life with TPN
• If you have room, consider keeping a small, apartment-sized refrigerator exclusively for your TPN. This adds an extra bit of protection from contamination from food in your main refrigerator.
• Be sure your Focus Rx NST has contact information of someone outside of your home in case of an emergency.
• In case of unexpected power outage, keep your pump plugged in so that your battery is fully-charged when you need it.
Traveling while on TPN:
Home TPN has certainly come a long way! You are not restricted to your home because you happen to require TPN. In fact, the TSA has established a program just for airline passengers who have specialized medical needs. It is recommended that you contact the TSA 72 hours prior to flying, and a TSA officer, supervisor, or passenger support specialist can be made available on the spot for assistance with security check in.
Be sure to inform your physician of your need to fly a few weeks prior to departure and obtain a letter outlining why you require a separate bag on board with your TPN supplies.
Temperature control during travel: A cooler and ice packs are essential to traveling while on TPN. Remember to arrange for refrigerator availability at your destination, and along the way if the distance requires lengthy transit time.
It is recommended to bring additional supplies sufficient to cover 2 extra days of care, should you be faced with a delayed return home for any reason. Remember, your Focus Rx NST is still available to assist you, even when you travel!
TSA Cares contact info:
Federal Relay: 711
8 a.m. to 11 p.m. ET
9 a.m. to 8 p.m. ET
Swimming With a Central Line?
**Check with your physician/practitioner before swimming with a central line. Different types of IV access require different approaches, and swimming may increase risk of infection that can quickly travel through the blood stream.
• A Central Port is the best type of IV access to have if you plan on swimming, as long as it is not accessed with a Huber needle. If accessed, you will need to keep covered and dry.
• A PICC line should not be immersed into water. There are commercially-available products aimed at keeping PICC lines dry while swimming. Some of these manufacturers even carry water-proof ostomy covers. **Please note that these products are not FDA-approved for swimming, do not replace your regular site dressing, and are not a substitute for catheter care/dressing change immediately after swimming. **
Support/Advocacy (changed from “Resources”)
American Society for Parenteral and Enteral Nutrition, ASPEN, promotes the advancement of nutrition care for people on enteral and/or parenteral nutrition via scientific research, establishment of evidence-based standards, and advocacy.
International Foundation of Functional Gastrointestinal Disorders, IFFGG, aims to provide a reliable and comprehensive source of support for people with a variety of GI disorders.
Today’s Careviver is available for, about and by caregivers in support of their efforts in caring for loved ones. It is a very useful and much-needed group has a newsletter, connections to local resources, and even a national conference.
Hyperemesis Education and Research Foundation, HER Foundation, offers support and education, while promoting awareness of Hyperemesis Gravidarum
Oley Foundation offers a wealth of information, advocacy, support and practical tips for living on TPN or tube feedings. They even have an equipment/supply exchange program to connect people with much-needed supplies.
Inspire is the Oley Foundations online community forum. Seek answers, understanding and support here.
Crohn’s and Colitis Foundation, CCFA, with its local and national reach, offers a way to connect, receive and give support and information for patients with Irritable Bowel Disorders (IBD).
American Cancer Society provides education and support and promotes research in the areas of cancer treatment and prevention.
MitoAction offers advocacy and support and promotes awareness of mitochondrial disorders.
United Ostomy Associations of America, Inc. UOAA is a nonprofit organization that aims to empower, support and advocate for people who have had or will have an ostomy or continent diversion surgery.
Short Bowel Syndrome Foundation empowers people with SBS to live fuller lives with educational materials and social networks.
Patient Advocate Foundation offers case management and assistance with appealing insurance denials of care.
Association of Gastrointestinal Motility Disorders AGMD provides information, resources, education, networking and support for people with digestive motility diseases and disorders.