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Got My Passport and HPN —Away I Go!
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Got My Passport and HPN—Away I Go!

Emily Parks

Some thoughts on traveling with HPN from the consumer perspective.

 

Transportation Security Administration (TSA)

               TSA at surface may seem like the most difficult part of traveling, but they are the unsung heroes. My approach to going through security starts with showing up to the airport early because no matter how long or short the line is, you will slow it down. I always, always, always show up to the airport with something infusing and I do this for two reasons.

 

 Emily grabs a photo op with a
koala bearin Australia

              First, flying dehydrates people. This is why you will see people chugging water throughout the airport; it has to do with the rapid change in altitude. So as someone who is especially susceptible to dehydration and as I cannot orally hydrate myself, I’m always hooked up to something when traveling, either parenteral nutrition (PN) or normal saline.

 

               The second reason is to create this overall image of myself. PN allows a Hannah Montana best-of-both-worlds situation: I can go without my pumps and appear like anyone off the streets, or I can go out with my pumps and appear as a visually “sick person.”

 

               I take advantage of this with TSA. I find it’s a lot easier to get through TSA this way, and I believe that it has to do with putting a face to an illness. I do choose to travel with all my supplies and pumps and PN, because I don’t like leaving the care of such important equipment to chance. I have more to say about flying with PN a little later.

 

               In regards to TSA, of course you can show up without anything running and a physician’s note, but in my experience, showing up hooked up completes the picture in a way a letter can’t. It really puts it in your face, it allows TSA to see how everything comes together, it makes it real because its right in front of them. This evokes empathy.

 

               So this is what I do, play by play. While I’m putting my stuff on the conveyor belt, I flag down an agent and tell them my backpack (I use a CADD pump) is a pump and I cannot take it off. I’m told to step aside while they look for a female agent to screen me. I usually don’t even go through a metal detector; instead I’m brought past it to individual screening.

 

               I usually travel alone, so TSA grabs stuff like my shoes and laptop off the conveyor belt while the rest of my stuff receives further screening. They open up everything, swipe it with the wand, and screen the wand. Then they screen me. I can do it in a private room, but honestly I don’t care and usually opt out. It’s the typical stance: feet apart, arms out, palms up.

 

               I give them the heads up that, while not a sensitive area, they will notice my ileostomy and gastrostomy on my abdomen during the pat down. I do this more for their benefit than my own. I find that TSA is almost like an unfamiliar animal; they smell fear. So if you are relaxed and transparent, they become relaxed.

 

               I tell them everything before they see it for themselves. I’ll tell them what they will find in my suitcase or backpack. I channel my easygoing vibes, remaining patient as they look for a female agent, look through my stuff, whatever it is. I reassure them that they’re not going to break anything, it’s all quite durable.

 

               I never touch my own belongings without asking permission; after all, TSA is scanning for bomb material. I know this. It’s their job. Frequently TSA agents ask me why I have all this medication and its never in a good cop/bad cop way; its mostly curiosity and I tell them. If you are relaxed and open, they will be too.

 

Airlines

               As for traveling with PN...it can be rough. My physicians insist up and down that I should bring it on the plane. Even if you look on various airline websites, they encourage you to bring all medication on board. Unfortunately, it’s a kinda “looks better on paper” thing, because I believe airlines are referring to pills, or maybe some vials of insulin. Once you show up with multiple bags of fluids, suddenly someone’s panties are in a twist.

 

               I’ve had some pretty nasty experiences from airlines. First, I do not check PN. I’ve seen Toy Story 2, and that scene where the guy chucks a suitcase into midair plays on repeat in my brain at the very thought of checking PN. Just because you write “fragile” on it or stress to the check-in desk what’s inside doesn’t mean the message will be passed along or regarded. Multiple people handle luggage from check-in to baggage claim. Furthermore, not all airplanes pressurize their luggage cabins, therefore the PN could freeze and become unusable.

 

               The airline’s problem with bringing PN on board is that it usually exceeds weight and size restrictions, which are set by the Federal Aviation Administration (FAA) to promote air safety. This is fair and just an example of how multiple federal regulations, in this case Americans with Disability Act (ADA) and FAA, can contradict each other.

 

               My main complaint is how I have been treated by airlines. I’ve had agents repeat to me almost biblically the weight and size restrictions over and over again while I try to tell them that PN is a life-sustaining medication. I’ve had agents question if the “excess of medication” is necessary and question why I travel. I’ve had an agent refuse to help me lift my PN into an overhead cabin while again, almost cult-like, chanting how if it can’t fit under the seat or I cannot lift it, it must be checked.

 

               I’ll be frank: there are airlines that I will not fly because I am a person on PN. While I will not name those airlines, I will say they are not flying the friendly skies nor does it seem they are going for great. My airline of choice is Southwest. You are allowed two carry-ons and two checked bags (under 50 lbs.) and this is especially convenient because most airlines do not count medical devices as a carry-on. I’m always allowed to pre-board, you can just ask at the gate, and an agent helps me lift my PN into the overhead cabin.

 

               Most importantly, Southwest agents are very emotionally present and very accommodating where they can be, even when it may go outside of their usual protocol. I’ve never felt like my illness is a burden to them, whereas with other airlines I have.

 

               The key to traveling with PN is to be confident in requesting your needs and knowing your rights to accommodation. Overall, I travel with my pump, supplies, and at least one PN bag and one bag of hydration. I just don’t like taking the chance of receiving the wrong supplies or pump and having to take the time out of my trip to troubleshoot. I try to get PN deliveries at my destination, like if I am visiting a relative who can help track the delivery, but sometimes that is not feasible, such as when I stayed at a hostel in New Orleans.

 

LifelineLetter March/April 2018

 

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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