Have PN (Parenteral Nutrition), Will Travel

Anna Patsy, MS, RD, LD, CNSC; Adriana Panciu, PharmD, BCNSP; and Nizar Senussi, MD

Adapted with permission from Practical Gastroenterology, December 2017. The original article was written for clinicians and can be found at www.practicalgastro.com/article/173962/Have-PN-Parenteral-Nutrition-Will-travel.

Traveling with home parenteral nutrition (HPN) can be a challenge requiring prior preparation and collaboration among the HPN consumer (the patient), the prescriber, and the infusion pharmacy. However, medically stable consumers should not be discouraged. It can certainly be done with advanced planning and assurance that your insurance coverage will continue. If you plan to travel, you should discuss your plans with your clinician(s), including your method of travel, final destination, and duration of the trip. It is important that you also contact your infusion pharmacy about your plans well in advance of travel dates. Infusion pharmacies play an integral role in providing accommodations for travel. If you’re going to be traveling to multiple locations within the United States during a trip, your infusion pharmacy may need to arrange for multiple pharmacies or branches to service you throughout your travels. If you’re traveling abroad for extended periods, a premixed, shelf-stable PN may be recommended (read on for details).

Case Presentation

A 35-year-old female reports that she is going on a ten-day trip next month. She will be flying to her travel destination in the United States. She has many questions regarding if and how she can travel with HPN, as she has not done so before. She is concerned about keeping the bags refrigerated during her travels. She has been on the home nutrition service for six months and is currently getting weekly labs drawn due to high stoma output related to short bowel syndrome. Her labs have been relatively stable for some time. It is difficult for her to always time her anti-diarrheal agents 30-60 minutes prior to meals. Additionally, she will be traveling south to a warmer climate. She has a single-lumen Hickman® catheter and is independent with dressing changes. After finding out that she cannot swim in the ocean due to her Hickman catheter, she is disappointed, but looking forward to swimming in the chlorinated pool at the hotel. (Note: prescribing physicians vary on their willingness to approve their HPN patient swimming in a public facility.)

Clinical Concerns

It is important that you know the signs and symptoms of dehydration and electrolyte abnormalities, as well as the signs of infection (fever, or shakes and chills during your infusion) and of central line occlusion or damage. If you experience any of these, you should report to the closest emergency department (ED) for evaluation.

Always know where the closest ER is should something unexpected happen. Identifying the location of hospitals along your travel route in advance would be beneficial. Carry contact information for your physician, infusion pharmacy, and, if applicable, nursing agency for fast and easy communication with your health-care team. (Depending on the duration of travel, the home nursing agency may stop services and require a new referral upon your return.) Also carry the specific information regarding your access device, such as manufacturer, size, date placed, and type, in case repair or replacement is needed.

If you are traveling to a warmer climate, discuss this with your prescriber. It may be beneficial to have additional liter bags of appropriate intravenous (IV) fluids on hand during your travels.

When traveling, you will need to ensure you have enough of your oral prescriptions, such as anti-diarrheal agents, anti-secretory agents, etc., prior to leaving for your trip, and the name and phone number of a pharmacy close to your destination should you need something called in. It is a good idea to keep a list of all the medications you use, with dose and frequency, readily available (such as in your wallet). You could work with the pharmacy to create a list of all the medications and supplies needed, including a backup infusion pump and a copy of your HPN prescription should you require admission while you are away. (Your home infusion company should also be able to send your current script to the hospital, should you be admitted.)

Monitoring

Infusion Pumps and Supplies

Figure 1. Example of HPN and IV fluid supplies needed for on week of travel.

You can carry IV fluids that can be administered in an emergency without using a pump, as via gravity or a controlled rate infusion device such as a tubing set, with or without drip chamber and control clamps that adjust the rate of infusion. You should be taught how to administer the fluids, and demonstrate that you can do it, before you try to do it on your own. In this situation, you may need to bring a collapsible IV pole with you. Your home infusion company may also provide an additional pump if extra fluids are needed.

You can arrange for your usual infusion pump, along with a backup pump, to be shipped to your final destination on the day of your arrival or in advance (note comments by HPN travelers regarding this issue in table 1). Prior to the trip, confirm that your pump made it to its destination and is secured for you to use upon arrival.

Some consumers transfer their infusion service to a national company while traveling, then transfer back to their original company upon returning home. If you do this, be sure you know what kind of infusion pump will be provided to you, and that you know how to use it. If you travel frequently, you may want to select a national company that can provide consistent service wherever you are (see table 2). [Editor’s note: Infusion pharmacies can ship into states that they hold a license in.]

Planning ahead will save you the trouble caused by the unexpected, but sometimes this may not be enough. In order to prevent damage to the HPN bags, it is recommended they are packed correctly in coolers (as instructed by the home care pharmacy); the proper temperature (36–46 degrees Fahrenheit) is maintained (using a thermometer to monitor temperature during transportation); the coolers and boxes are marked as fragile and “handle with care”; and, if flying, the coolers are taken on the flight, with bags in plastic overwrap and layered in bubble wrap.

Although ice packs may melt during transportation, the HPN will be safe to use as long as it remains between 36 and 46 degrees Fahrenheit. Electric thermometers are relatively inexpensive and may be used to monitor the temperature of HPN while in transit, as well as in small or portable refrigerators at your final destination. If you are traveling by car, another option is to use portable electric coolers to keep the HPN at the appropriate temperature.

Cooler size should allow all cooler space to be used, including enough ice packs for the duration of the transportation. Ice packs should not directly touch the HPN as that can cause spot freezing. Bubble wrap or something like it will protect the HPN from spot freezing. Once the HPN is in the cooler, try not to open it unnecessarily as it will lose temperature faster.

A “keep refrigerated” sticker should be in place, as well as a seal that identifies that the cooler has not been tampered with. Packing one or more HPN bags separately as a carryon is a good idea, so that back-up bags are available in case any are damaged in transit. If HPN bags are damaged, contact the home infusion pharmacy as soon as possible to obtain replacement bags.

HPN bags are heavy, and bags, pumps, and supplies can take up a lot of space (see Figure 1 for an example of HPN supplies for one week). It is recommended that you keep your HPN with you when you travel by air as temperature in the luggage compartment may not support optimal temperature ranges for HPN. Further, checked luggage can be lost. One good option is to use rolling coolers that fit into the overhead space of an airline.

It may be possible to have the HPN shipped to your destination in advance of your arrival, and arrangements may be made to re-send them in case the shipment did not arrive or arrived damaged and is deemed not safe for use.

Once compounded, PN is stable for only nine days, hence longer trips will require multiple shipments. The pharmacy may choose to send these via shipping carriers such as UPS or FedEx for overnight or same-day delivery. As mentioned earlier, the ideal temperature for storing PN is 36–46 degrees Fahrenheit, hence, the providing pharmacy will pack the PN in insulated coolers and use ice packs during transit.

Prior to arriving at your final destination, you will need to request or confirm a refrigerator for your room and that it has been turned on and cooled properly. You should consider the amount of space you will need, based on the size of your HPN bags, and request multiple refrigerators if needed. Many small refrigerators come with thermostats that display the temperature as a range from cool to coldest, rather than degrees. Monitoring the temperature of the PN solution is crucial. It becomes unstable and unusable if it freezes, as well as unusable if it gets too warm.

Premixed multi-chamber PN products are manufacturer-prepared PN solutions that may or may not include lipids, depending on the brand. These solutions are stable at room temperature for up to two years (shelf stable, i.e., they do not need refrigeration). The ingredients of premixed solutions are in separate chambers; the ingredients are combined when ready for administration. Premixed solutions are available in preset volumes (1 to 2.6 liters, depending on solution and manufacturer). If you’re traveling abroad for extended periods, this may be an option, since, as mentioned earlier, patient-specific compounded PN is only stable for nine days.

If you’re going to try the premixed PN, it is recommended that you try it at home before you leave to be sure you tolerate it and your labs stay stable; this goes for any new product. If you have excessive GI losses and high potassium requirements, your prescriber will want to give special consideration in choosing a premixed solution; these solutions may not work for you. Supplementation with oral electrolytes may be an option to help maintain serum levels if deemed appropriate, depending on your anatomy and absorptive capacity. If premixed multi-chamber PN solutions are used, you may need additional training before your trip to ensure you are able to activate all sections of the bag.

Depending on the infusion pharmacy’s policy, it may pay for the transport of PN only to those states where the pharmacy is licensed. If the pharmacy is not licensed in the state where you will travel, with your consent, the pharmacist can assist in finding a local company and arrange for the smooth transition of your care to that company upon your arrival and until you return home. These arrangements may include finding another infusion pharmacy, home-care nursing agency, lab, and sometimes even a local ordering physician (as some states require that the ordering physician be licensed in that state) that are ideally in your health insurance network. Coordination of who will transfer prescriptions, HPN solution, etc. will need to be determined well in advance of travel (a month is a good goal), and communication with the health-care providers identified to assume temporary care during travel will need to be arranged between all parties involved.

Some pharmacies may be part of a national specialty pharmacy in the state where you are traveling. In this case, the transition may be easy to facilitate; it is recommended that you check with your pharmacist regarding this possibility.

TSA Screening

Information about security checkpoint screening policies and procedures for medical supplies and prescriptions can be obtained by calling the Transportation Security Administration helpline (TSA Cares) at (855) 787-2227, or by visiting www.tsa.gov/travel/special-procedures. While not required, making arrangements for any special assistance in advance of travel will help you have a less stressful, smoother, and more enjoyable trip. If you’re traveling for the first time with PN, don’t hesitate to contact TSA Cares with questions or concerns.

Some consumers have found it useful to have a letter from their physician stating the need for their medical supplies and a central catheter (see table 3) available to present to TSA staff. From the TSA website above, you can also download a special notification card to present to TSA officers to alert them to your health condition(s).

Swimming

HPN consumers often wonder about swimming with a central line in place. The existing literature is inconsistent and there are no evidence-based guidelines or consensus recommendations. A review article identified a lack of consistency regarding swimming with a central line across various HPN programs [see www.oley.org/page/Swimming_TeamEffort]. Some programs do not permit swimming at all, while others allow swimming in chlorinated pools.

All programs cited in the article recommend site care and dressing change after swimming. The length of time that the catheter must be in place prior to swimming differed among HPN programs. Those with a de-accessed port may participate in all water-related activities with no restrictions.

Discuss this issue with your health-care team and be sure you understand what the safety issues are—your personal risk factors, water quality, etc.

Case Study Continued

The patient was able to arrange with her infusion pharmacy to ship the PN supplies to the hotel, since the pharmacy was able to transfer service to a branch at her destination. The pharmacy shipped nine bags of PN and seven bags of IV fluids in case she would need additional fluids during her stay. The local pharmacy branch servicing her would need to make a second delivery to the patient at her hotel during her stay. She did not need to obtain labs on her trip, as the trip was ten days in duration and she has been stable on PN for a long time. Lab results and home care would resume as usual upon her return from her vacation.

Conclusion

PN should not be a limitation to travel—it just requires some additional planning. Advance planning will ensure a smooth transition back to the local pharmacy upon your return home. Clear communication between the pharmacies and prescribers involved is key, including the most current PN orders, recent lab results, new referral to the nursing agency for restart of services upon returning home, supplies needed and when to send them, and any changes in the place where you will stay locally. Those with additional questions can utilize the resources available from the Oley Foundation (see table 4). Resources include travel tips, guidelines on swimming, and information to network with other people who are well versed in traveling with PN.

Steps to Take for Traveling with PN (see table 5).

BONUS -- Additional Tips from Home Infusion Companies

We asked several infusion companies if they had anything to add to the article about traveling with home parenteral (IV) nutrition (HPN) that ran in the March/April issue of this newsletter. We were able to incorporate some of the comments into the original article (thank you Coram and ThriveRx!), but other comments were more involved or came after the article had been published.

Here we share the additional tips, to provide more ideas on making your travels successful. You can find the original article at www.oley.org (select the newsletter tab and look for the March/April 2018 issue), or request a paper copy at (518) 262-5079.

From Ann Weaver, Consumer Advocate, ThriveRx

The article suggests shipping your infusion pump, but I would be hesitant to do that because of risk of pump not arriving, or unexpectedly needing it due to flight delays. I instead would encourage consumers to carry pumps and at least one to two days worth of fluids and supplies with them, in case of unexpected flight delays.

Some companies routinely ship supplies at no additional cost to the consumer. The article suggests it might be possible to set up a relationship with a new pharmacy while you are traveling, but this may be difficult. Consideration would have to be given to the time required to do this, and insurance coverage would have to be confirmed beforehand. If traveling is important to you, it is worth exploring a home infusion provider that can accommodate your travel needs.

 We have been told by TSA that you may not need to be patted down if you are attached to a pump, and that you may be able to complete a self-pat-down and have your hands wiped and tested. If you need to go through security hooked up to your pump, it is reasonable to ask if this is an option, but there is no guarantee you will be allowed to do so. Also, it is uncommon for TSA to review a physician’s letter in detail; a general summary may be sufficient, and your physician or home infusion company can help with this. (A more detailed health summary could be helpful if medical care is necessary while travelling abroad.) It is reasonable to ask TSA agents for new gloves when they are reviewing fluids in a bag, and to respectfully involve a supervisor if there are issues. TSA Cares will walk you through the screening process; many seasoned travelers have appreciated the assistance.

Consumers can familiarize themselves with the Air Carrier Access Act regarding carrying on extra medical supplies. (See www.transportation.gov/airconsumer/passengers-disabilities. The FAQs at www.transportation.gov/sites/dot.gov/files/docs/FAQ_5_13_09_2.pdf are helpful, particularly numbers 44–46.) It is my understanding that a person on HPN should be able to carry on medical supplies and is not limited to the two-bag carryon policy, so long as the contents of the extra carryon(s) is exclusively medical. Also, there should be no charges for checked baggage that is exclusively medical.

 I encourage consumers to consider checking medical supplies at the gate (so you know they are on the same flight you are), and carrying on if you are not on a direct flight. 

There were important considerations not mentioned about international travel. Typically, state and federal health plans do not offer coverage while travelling abroad and consumers should consider supplemental health insurance. Travel insurance and medical transport insurance are also worth looking at, especially when travelling to areas where level of medical care may be questionable. It may be helpful to include a copy of the HPN prescription and travel letter in supply boxes when travelling abroad; the home infusion company may provide these, and package them with supplies. 

 While it is suggested that HPN could be placed in a hotel kitchen fridge, I recommend keeping HPN in the room and having the hotel freeze ice bricks, which can replace the thawed ice bricks in insulated shipping boxes or coolers.

 In her article about traveling from a consumer perspective (also in the March/April issue), Emily talks a bit about the dehydrating effects of air travel and how to handle that. That is a great point that should be discussed with a clinician before you travel. 

From Michael Medwar, Patient Advocate, Coram CVS/specialty infusion services:

If you are traveling internationally, shipping may not be possible. You may need to carry all medically necessary liquids and supplies. Be sure to have documentation such as a doctor’s letter and a medical inventory to present to authorities at international airports.

While not required, making arrangements for special assistance from a TSA Passenger Support Specialist in advance of travel will usually help you have a less stressful, smoother experience when passing through security at U.S. airports. If you’re traveling with PN, don’t hesitate to contact TSA Cares with questions and to arrange this assistance.

From Penny Allen, RD, LDN, CNSC, National Director, Nutrition Support, BriovaRx Infusion Services:

One idea that was briefly mentioned that could save a lot of work and anxiety is the idea of using a premixed PN formulation for travel. Prior to planning for the trip, the consumer should work with their physician and home nutrition support team (infusion provider) to assess if there is a similar premixed manufactured product available to substitute for the duration of the travel, so refrigeration is not needed. These bags are easier to pack in a suitcase, and do not need any refrigeration until after they are activated.

Years back we helped a consumer go to London for a semester! It took months to plan with her physician, customs, Fedex, etc. but we switched her to a premixed formula while she was attending college in London. She was stable enough that she only need one or two blood draws during the semester so it worked out great that she got to experience a semester abroad. We also had a businessman for years who traveled regularly and we would switch him to a premixed manufactured formula whenever he had to travel. He just put the bags in his suitcase along with supplies needed and he was stable enough to skip lipids for a few days. The premixed packaging is also hard to burst or damage if packed correctly.

Another comment: insurance coverage (especially Medicare) may make it very difficult—or impossible—to switch infusion companies short term for travel purposes (and the infusion companies may not like it either). Consumers do not want to risk losing their insurance coverage, especially those with Medicare and the difficulty of meeting the stringent criteria in the first place.

LifelineLetter March/April 2018 + Bonus from LifelineLetter May/June 2018