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The Ultimate Guide to Flying with TPN Series Part 1: Plan and Prep

In the past decade I’ve flown many times with TPN and have learned so much about it along the way that I’ve got my method down to a science and I’d love to share my tips with you in case any would benefit your travel routine.  Because there is so much information to go through I have broken this into a few posts that focus on different aspects of traveling with IV nutrition and/or a health condition. 

In this post I discuss the planning and preparation I do before my trip in order to set myself up for the smoothest travel experience possible. Of course sometimes things don’t always go according to plan and the ability to roll with the punches helps.

1. Assess My Current Health Situation

Throughout my travels with TPN my health has been in different places. Sometimes I was doing really well and at other times I required a lot of help to make traveling a possibility. The first thing I do before each trip is assess how I am doing at that time and then come up with a list of things I would like to have to make traveling easier. As I write this I am planning for a trip in a few weeks. 

Here is my current situation:

I am 95 pounds with a BMI of 15.8. I am on HPN, have an implanted medical port in my chest and currently struggle with pain, weakness, and nausea. My trip is 9 days long and I will have one travel companion. 

With a low BMI, pain, and nausea I know I will probably want to use a wheelchair at the airport in case I am having trouble standing. I will be traveling with 8 bags of TPN that need to stay cold and many medical supplies. My flight leaves very early in the morning so I will still be connected to my pump at that time. Now that I’ve thought about my situation – underweight, weak, a possibility of pain and nausea, traveling with 2 heavy suitcases of medical supplies along with my regular luggage; I know what assistance (if any) I would like to have at the airport to make the experience less burdensome. 

With everything in mind I have determined I would like the following:

  • Wheelchair assistance
  • The ability to bring medical supplies onto the plane
  • Priority boarding
image of wheelchair

2. Contact the Airline in advance

Now that I know what I need I set out to get it. 

I like to board the plane before everyone else so that I can bring my medical supplies onto the plane without 200 impatient people bumping into me and my tubing while we carefully store everything in the airplane.  If you set up wheelchair assistance you automatically get priority boarding but if you don’t need a wheelchair but think you need to board the plane early you can contact the airline. 

Each airline differs a bit in how to make requests but most of the information can be found on their website. I am flying American Airlines for my next trip so I’ve taken screen shots of the process. 

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Special Assistance Request: I clicked on ‘request special assistance’ and was able to fill out an online form about my situation. I am now waiting to hear back from a special assistance coordinator. 

Special Assistance Coordinators: Update! I have now spoken to American Airlines special assistance coordinators. Actually, we have spoken to them twice now since we had to push our trip back a week due to an unexpected hospitalization. When Dan talked to them after changing our flight they were very helpful. They let us know that they would even do things for us like make sure we had seats next to each other by moving other people around if we were not able to find seats next to each other when booking. 

They requested the make and model number of my TPN pump to check and see if it was an approved medical device. It turns out that it is. Knowing that they are expecting me takes some anxiety off my mind.

You can learn about what happens at the airport after all of this is set up in post number 3 of this series. 

3. Contact tSA Cares (If needed)

If you have questions or concerns about going through airport security you can contact TSA Cares. They also provide cards that you can show an agent if you are uncomfortable disclosing your situation out loud in public that can be used to disclose ostomies, implanted medical devices, and more.

4. Contact Your Doctor

It is a good idea to let your doctor know of your travel plans. I have done this in the past and my surgeon was able to tell me what hospital he’d like me to go to if I ended up in a medical emergency. It’s also good to get a note from the doctor that oversees your TPN care so that you can use it if needed at the airport. A simple note stating that you are traveling with (whatever medication, ostomy, supplies, etc.) and why you need them should do. I have traveled with TPN, with tube feeding formula, and medications and I have never been asked to provide any sort of documentation but it’s a good idea to have just in case.

5. Contact Your Home Health Pharmacy

Let the pharmacy that supplies your TPN know about your travel plans in advance. Depending on the company you use sometimes they are able to ship your TPN and/or medical supplies to the hotel you will be staying at. There are pros and cons to both situations. I prefer to take everything with me because then I don’t have to worry about someone at the hotel getting the package and not putting it in the refrigerator right away or handling it wrong. However, if you plan on taking a really long trip or traveling out of the country you might need to have your TPN sent to you because it is only stable for so long. This is another reason why you should contact your team ahead of time so that arrangements can be made. 

The pharmacy can get you documents that may help with getting through airport security easier like a complete prescription list or labels to use on your luggage that say ‘refrigerate’ or ‘medical supplies.’ I’ve never needed these things but you never know.

**My trip was 8 nights and 9 days long. My normal weekly schedule is 5 nights with lipids in my TPN and 2 nights without lipids. Since the bags with lipids are stable for a shorter amount of time we adjusted things for my trip and I had 5 nights with lipids and 4 without. 

6. Refill Prescriptions

Think about any medications you are running low on and need to refill before your trip. Make sure you will have enough to cover two extra days just in case.

7. Contact the Hotel

Since I am traveling with TPN and it needs to stay refrigerated I need to make sure that our hotel rooms will have a refrigerator.  I always call ahead just to be sure and to let them know it’s an absolute must because I need to store life sustaining medical supplies in it. 

8. Become independent with your TPN set up, central line, etc

Before you can travel you or a loved one will need to be trained to take care of your needs. I handle doing my TPN and Dan handles accessing my port. If we were unable to do this on our own we would not be able to travel and life would be a lot more isolating than it can sometimes already be on HPN. As you can see in the video I was setting up my TPN in a hotel room while away from home. Remember that it is possible to enjoy life on HPN! 

9. Research the area you're traveling to

Depending on where you are going you will want to think of things like local hospitals, pharmacies, if you need any vaccinations for the trip, and so on.

10. Set aside TPN boxes and ice packs (if needed)

In the past I packed my TPN in a cooler on wheels I purchased from the store but you can use the boxes your TPN is delivered to your house in. It’s free, they already has ice packs in them, and you know they can keep the TPN cool. 

If I were traveling alone or had to handle these boxes myself (they can get heavy) I wouldn’t recommend this. If you do this do not tape them because TSA will need to look through them and then you can have them tape them shut.

That’s all for this post. Continue on to part 2 which is about how to pack for flying with TPN.

Sara

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