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Newsletters: Learning to Travel with TPN
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Learning to Travel with TPN

Svea Emerson, MEd, MA, RD, LD, CNSD, BSN, RN
Corporate Consultant

As I write this article, my husband and I are driving to our 15th college reunion 300 miles away. For the 10th reunion, we flew from Texas (about 1200 miles) and I struggled to keep a basic sustenance down each day.

This time I come with an Igloo cooler for my TPN and Zofran (anti-nausea), and a box with "emergency supplies” like catheter repair kits, extra Zofran, hydration and a portable pump. (I've just finished a six-week course of antibiotics for a tunnel infection, so I have more cooler room for diet soda.) It's obvious from these details that TPN has changed my life. But equally apparent, I hope, is that TPN hasn't consumed my life.

For 10 years I was misdiagnosed with diagnoses ranging from atypical anorexia to irritable bowel. I struggled daily to assimilate 800 to 1000 calories of low-fat foods, including fruits and vegetables. After being hospitalized the second time for malnutrition, I started on TPN.

TPN was a gift, a relief. It provided peace and was a way to continue my active personal and professional lifestyle. Then, almost immediately, the adventure with TPN and traveling began. My husband and I had previously made reservations for a trip to Alaska that was to start 6 weeks after I began TPN therapy.

That first "overseas” trip included a pump, pole, Igloo cooler and FedEx shipments to keep me nourished. After that experience, domestic flights proved to be simple: only a medical supply box and the FedEx box of tubing, syringes, saline, TPN etc. Over the next four years, we continued to take many more overseas trips, including such destinations as England, Hong Kong, Bangkok, Singapore, Japan, Paris, Australia and New Zealand.

 

The Savvy TPN Consumer

Traveling with TPN, Zofran, enteral drugs and whatever else is needed that day, has proved to be a full-time occupation. As a registered dietitian and nurse, I now travel the nation as a corporate consultant for a home care company. Over the past few years my husband and I have shared and learned many things from our experience with TPN. Below are some of the most important lessons. (For specific advise on traveling see "Overseas Traveling Tips.)
1. Our experiences and disabilities as TPN consumers do not make us inferior. We are unique and special people who simply "eat” a different way.

2. The time required for therapy should be integrated into your lifestyle, just like doing laundry or cooking meals. Make your therapy portable so you can take it with you. Home care does not mean "home bound”, it only means out of the hospital or clinic. Portable pumps, silastic pumps, even IV bags can be simple to manage without pole. Your infusion company should be able to help. My motto is to always have "take out” infusion!
3. Keep your supplies and medications organized daily. This gives you time to respond to any emergencies or to obtain new drugs.
4. Talk about your disease or coping methods with your family and friends as you and they feel comfortable. Remember, they need to cope with your equipment and disabilities too.

5. If the condition of your disease and insurance coverage permits, keep working or doing what you did before TPN. Getting up and doing something for someone else is therapy. Work with your health care team if you need help coordinating this.
6. Faith in God and His peace can provide you with the strength you need to continue the daily therapies and overcome challenges with confidence.

In summary, your experiences with HPEN can be challenging but very rewarding. Indeed we've found that the best things in life require planning and effort. Believe me, you can adapt TPN to fit your new life.

 

Overseas Traveling Tips
Keep one to two days supplies and drugs with you on the plane. This gives you some leeway if your supplies are delayed.

Ship refrigerated supplies in a foot locker trunk that is lined on the inside with foam rubber and then with Kool-It frozen blocks. Tubing and other supplies can be added if you have enough room. Otherwise, put supplies in additional boxes or trunks. My trunks usually weigh 90 to 100 pounds for a seven- to 10-day trip. Airlines usually do not charge you for shipping even though you will exceed allowances. If they do, your home care company should reimburse you. In addition, your home infusion company should provide all of the shipping supplies.

Ask your home care pharmacist to provide a complete prescription list and labels necessary for customs.
Ask your physician to write a letter that explains to airline and custom agents the necessity of your carrying these medications.
Call hotels ahead of time to make arrangements for refrigeration. In addition to the TPN supplies, you'll also need your Kool-It blocks re-frozen if you have more than one destination.
Know where the closest hospital is located. Always think ahead.
If you require some medications or supplies only occasionally, take those with you. Getting them through customs unaccompanied can be expensive and maybe impossible.

Copyright © 1995 The Oley Foundation
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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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