Oley Foundation

Tips for Traveling with HomePEN

A little preparation can go a long way when you’re traveling far from home with HomePEN. Keeping this in mind, we’ve compiled some tips from previous articles, conference sessions, conversation and correspondence, to make your next trip safer and more enjoyable. Thank you to everyone who has contributed to these tips and to those who volunteer to share their traveling experience.

1. Consult Your Physician

Ask your physician whether travel is appropriate and what problems might be anticipated. Find out whether your doctor or an associate will be available by phone during your trip. (If possible get their pager number, since the emergency may happen after hours.) In the event of a problem, you and the attending staff at the unfamiliar hospital will want to be able to reach a doctor who is familiar with you and your medical history.

The physician’s phone number, your medical history and other vital information should be filled in your "Travel/Hospitalization Packet" and carried with you. A copy of the packet can be downloaded ( t ravel packet) You can also email us at DahlR@mail.amc.edu for an electronic copy of the packet that you can customize to fit your needs; or call us at 800-776-OLEY/518-262-5079 and we’ll mail you a copy.)

Ask your physician to write a letter explaining your need for the ‘supplies’ you are bringing with you — especially if you are traveling out of the country and/or with pain medications. (Note: for the purpose of this article, ‘supplies’ refers to everything you need for HPEN, from tubing and syringes, to HPN solution/HEN formula, to medications and vitamins.) Pack a copy of the letter in each box of supplies, and carry one on your person to share with customs and other travel officials. If possible have a copy of the letter written in the language of the country you are traveling to. For free foreign language translation help try: http://babelfish.com or www.freetranslation.com

2. Prepare for Emergencies

Have a plan of action in case of an emergency. Locate the nearest medical center or community hospital in the area you are traveling to. Ask your physician if he or she knows a physician familiar with homePEN in the area you will be staying. (A second resource for finding a clinician is the Oley medical expertise listing). The phone number of a local pharmacy is also helpful to find out ahead of time, in case you need a prescription phoned in.

Discuss with your physician what steps to take should you become ill or experience a difficulties with your homePEN. For your convenience and peace of mind, Oley produces a complication chart for HEN and HPN consumers, that covers the symptoms and steps to take for common problems related to these therapies. It is a good tool to use when speaking with your physician prior to leaving, and to pack with you for the trip. (Copies of the charts are available by calling the Foundation at 800-776-OLEY/518-262-5079.)

(Note: If you are traveling to the United States from another country, or traveling from state to state within the United States, the easiest way to replace prescription items is to visit a local on-call or urgent-care medical facility. State regulations require that a physician practicing in the state must write any prescription being filled in that state. Have contacting information for your local health care team with you; the ability to connect them with the physician in front of you will facilitate the writing of a prescription. A list of supplies, prescription items, etc., signed by your local medical team, can also expedite the process.)

3. Research Your Supply Needs

Prepare a list of supplies well ahead of time. This will help you avoid overlooking any items. Pack a few extras in case of loss or damage. Talk to your physician/nurse and/or home care company about a back up plan (extra pump or battery, or how to gravity feed), in case you have trouble with your pump when you are on the road.

If you are traveling abroad, you will likely need to plan ahead how you will overcome the issue of running your pump on an electrical system that is different from your home country’s. The simplest and most reliable option is to run your pump on regular 9V batteries, which many pumps allow, such as the Baxter/Sabratek 6060 and Provider One. Regular alkaline batteries typically last for two or three infusions, where lithium batteries may get you through five infusions. While you are still at home, run your infusion with 9V batteries for a few days to test how long they last for your pump, and pack accordingly. You can also buy 9V batteries in most countries, though for the small amount of weight and space, you may as well bring them from home.

Another idea is to purchase an adapter made expressly for your pump/battery charger, if the company offers one for the country/region you are traveling to. For example, one consumer was able to purchase a ‘European CADD adapter’ for his CADD pump/battery recharger through his supplier which he was able to plug directly into different European outlets (without using a generic travel converter, transformer or plug adapter). This same consumer cautions against using a generic travel adapter/converter/transformer (that you might use for a hairdryer) with your pump/battery charger, since he ‘fried’ his battery charger when using one on a previous trip abroad.

A third option for getting around this issue, is to infuse by gravity which you would need to discuss with your physician before implementing.

4. Work with Your Home Care Company

Your home care company may have an office or affiliate in the area you are traveling to that can deliver solutions/formula, and possibly supplies, directly to you at your destination. Many consumers have taken advantage of this opportunity - even on trips to Europe. This avoids the fatigue of carrying the supplies yourself, and reduces the worry about shipping delays and the hassle of dealing with customs officials (when traveling abroad). Just in case of a delay, it is advisable to pack at least one night’s worth of supplies with you.

A second option is to have your home care provider ship your supplies for you. If your supplies will be shipped to a hotel, you’ll need to explain to a hotel representative (likely the manager of the receiving or security department,) how to handle the supplies properly, especially if any of it requires refrigeration. It is best to do this when you make your reservation to ensure they can accommodate you, and then to verify the information a SECOND TIME the day you expect the supplies to arrive. Again, because of the possibility of delay, it is advisable to pack at least one night’s worth of supplies with you.

To be sure your supplies are there when you need them, you may want to have them shipped such that they arrive a day ahead of you. This way you can verify before you leave home that they have arrived safely. (This may be helpful when going on a cruise.) Unfortunately, some companies will not ship supplies ahead for fear of mishandling or loss.

Having your supplies shipped overseas can be a more risky and time consuming adventure. If you decide to go this route, one experienced traveler suggests having them shipped ‘directly’ to you via air cargo. (He cautions against using an international courier such as Fed Ex or UPS, because no one knowledge about the supplies will be there to answer questions if difficulties arise with customs officials.) He advises carrying two days worth of supplies with you (at least one day’s worth in the cabin), choosing a direct flight whenever possible, and having the rest of the supplies arrive a day after you. This gives you time to orient yourself in the foreign city, and to be at the air cargo terminal when your supplies arrive so you can personally assure their safe and timely passage through customs.

No matter how you choose to ship your supplies, planning ahead and coordinating your efforts with your home care company can make this process a lot smoother and is well worth the extra effort. Before you leave, both you and the home care company should know details like how many boxes are being shipped, their contents (clearly labeled) and your travel itinerary (including flight/transportation information, destination addresses and phone numbers).

One consumer whose luggage - including 8 days of TPN and hydration - was lost on a flight to Europe, recommends carrying on all of your supplies when traveling anywhere you cannot be guaranteed overnight delivery by your home care company. This approach can be very fatiguing, of course, and requires extra work with the airlines to avoid a financial charge for the extra baggage.

Another option for sending your supplies or other baggage that can tire you, is a door-to-door luggage shipping service. United Airlines offers this service, as do a few other shipping/courier-type companies. You'll want to research this option carefully, to be sure you've covered your risks. Click here for details on a few of these programs (the list is by no means exhaustive)

5. Keep Solutions Cool

Refrigeration can be a nuisance, but there are some tried and true tips that experienced travelers follow. To reduce your load, pack items that require refrigeration separately, clearly labeling those that need to stay cold.

To be sure your solution/formula stays cool enough, use cooling packs on the bags/cans and cover both with ice. Don’t forget to re-cool your cooling packs in a freezer whenever you have the opportunity — especially when traveling by car in hot weather. When making a hotel reservation, be sure they can guarantee a refrigerator or your room, or space in their kitchen’s refrigerator that you will have adequate access to. When your hotel doesn’t offer refrigeration, but does offer ice, try this method. Using plastic containers or Zip Lock baggies make some ice blocks, each morning, pour off any water that has melted and fill any empty space in the bag/container with ice cubes. These can last several days, depending on the weather. As the days pass, and your solution gets used, fill any empty space in the cooler with crumbled newspaper, and cover with a heavy bath towel.

Unopened/unmixed HEN formula will require refrigeration only if it will be exposed to very warm temperatures, typically 77°F or higher (check the label on your can or package). Unused formula from an open can or packet that has already been mixed, should be refrigerated. Thus it is possible you will need refrigeration for your HEN formula only at your hotel, and not for the actual transporting.

On the other hand, HPN solutions almost always require refrigeration. To get around this obstacle, you might consider bringing the components of your solution in separate containers (i.e. fluids, lipids, additives, and vitamins). When they aren’t mixed together, they don’t need to be refrigerated. Of course this means you will have to mix them yourself before hooking up. Before you plan on taking this route, talk to your physician and home care company to be sure this is a possibility for you. (Robin Lang has experience with this.)

6. Network with Other Travelers

Whether you are planning your first trip on homePEN, or your first trip overseas, it’s a good idea to call a consumer who has experience traveling with HPEN. The volunteers listed in the chart below have happily provided helpful tips and stories to Oley members over the years. Feel free to call on them for advice concerning your next trip. Bon Voyage!

Oley Consumers with Significant Travel Experience

Robin Lang* (207) 790-2101 ivtpn@maine.rr.com

Sheila Messina* (408) 978-0466 sheila.messina@gte.net

Elizabeth Tucker* (952) 435-0013 evtucker@charter.net

Felice Austin (parent) (702) 435-6007 fleecey@aol.com

Judy Peterson* (619) 226-2061 catsjp@cox.net

Don Freeman* (613) 825-4321 donfreeman@sympatico.ca

Ann DeBarbieri* (518) 587-0373 annpauld@gmail.com

Linda Gravenstein (281) 376-9468 lgravenstein@yahoo.com

Terry Edwards* (604) 788-7953 tedwards@richardspackaging.com

* indicates international travel experience

Medical Air Transport Services:
Air Charity Network http://www.airlifeline.org/
National Patient Travel Center http://www.patienttravel.org/
Northwest Airlines KidCares http://www.nwa.com/corpinfo/aircares/about/kidcares.shtml
Mobility Air Transport http://www.iflymat.org/
Angel Flight. http://www.angelflight.com/
Air Care Alliance http://www.aircareall.org/listings.htm