How to travel with mast cell disease

My travel tips:

1. If you stopped traveling for health reasons, talk to your health providers when you want to start again. If you would receive emergency care at another hospital, it’s important to discuss exactly what that should look like.
2. Get fit to fly letters that detail what medications you need to carry onboard with you and emergency protocols on letterhead from your doctor. If possible, get multiple originals (with original signatures) rather than an original and copies. If traveling abroad, it is helpless to have them notarized.
3. Always carry rescue medications, emergency protocol and “Greatest Hits” sheet listing your diagnoses, daily meds, rescue meds, and any special precautions. You should do this everywhere, but it is especially important if you are traveling. If you take over the counter meds, they should be listed as well.
4. Make sure that it is legal to transport all of your medications to the destination. Some medications are illegal in certain countries, regardless of whether or not it is for your personal medical use. Of note, diphenhydramine (Benadryl) is illegal in some countries.
5. Find out if your medications are available at your destination. If they aren’t, identify an alternative.
6. Call the airline directly to describe your needs. Many airlines have seats with more space (bulkhead) that are preferentially given to people with medical issues so you have more room for meds/supplies. If you have need to use medical equipment during flight (like an infusion pump), tell them when you call and have the model number/serial number handy. Airlines will refrigerate medication for you if you tell them in advance.
7. If you are triggered by standing for long periods of time, lifting your carry-on, walking, etc, ask for a wheelchair to meet you at check-in and take you to the gate. In my experience, if you have a ton of meds/liquids with you, going through security is easier if are in a wheelchair.
8. Get to the airport early. I always go at least an hour before recommended. If you have made requests for assistance (like a wheelchair), you will not be able to check-in online.
9. Expect to have to tell your story at the check-in counter to at least one employee and their supervisor. Even with the notes added when you called the airline, you may still get push back when you check in. This most often occurs in the form of restrictions applying to your carry-on.
10. Remind them that you are allowed to bring extra luggage onboard if it contains medication/medical supplies. I infuse while flying so I have to wear a backpack at all times that holds the bag attached to my port line. Sometimes, they will count this backpack as one of my carry-on items and say I can only bring one more piece aboard. Again, you are allowed to bring extra luggage aboard if it contains medication.
11. Be reasonable with the extra luggage. Only bring aboard what you really need. When I flew to and from Hong Kong, I had a carry-on packed with all my meds in labeled containers, supplies to access/dress my port, and three days worth of IV bags and supplies to spike and remove air from IV bags. This would be enough that in an emergency where everything else was lost, I would have enough IV meds/supplies to fly home.
12. Pack medical supplies in hard shell luggage so that things don’t get crushed or broken.
13. Pack everything you need for the day in a separate bag and keep it in your purse. This is much easier than getting the luggage down in flight.
14. Bring safe foods. Do not expect to be able to eat on the airplane if you have severe food issues. You are allowed to bring some foods through security.
15. Expect that going through security will be time consuming. It will be. If you have medical implants/devices like central lines or ostomies, tell them before you go through the metal detector.
16. They will definitely pat you down, open your luggage and swab everything for explosives. Show them the letter stating that you need to bring these medications/supplies onboard.
17. When you arrive at the gate, ask at the counter to board early.
18. If you are sitting in the bulkhead row (no seats right in front of you) and you have an infusion pump/backpack, tell the flight attendant when you board. What happens next depends on the flight crew. Sometimes they will want you to switch seats for take off and landing since you can’t stow the backpack under the seat. Sometimes they will let you hold the backpack like a baby. Sometimes they will let you buckle it into the seat next to you.
19. If your pump will be on during take off and landing, if the flight attendant asks about it, tell them that you spoke to the airline previously and that it is medically necessary. It is safe for the pump to be on during take off and landing.
20. Hydrate like it is your job. Flying is seriously dehydrating and can really exacerbate GI motility issues.
21. I premed 24 hours and 1 hour before the flight with steroids, diphenhydramine, ranitidine and montelukast, just like for before surgery. I am most reactive during take off and landing, so I am careful to premed with enough time for the drug to be active during these times.
22. If my flight is longer than the window of these medications (3-4 hours), I medicate again an hour before landing. Please check with your doctor to determine what is the best medication protocol for you to provide additional coverage for flying.
23. I infuse IV fluids while flying as it helps stabilize my blood pressure.
24. I take extra diphenhydramine (Benadryl) for at least two days after flying. I also do a short taper to get down to my baseline steroid dose (I have adrenal insufficiency).
25. I take extra stool softener for a few days before flying and a few days after to avoid worsening GI issues from dehydration.
26. Call the hotel before you book to discuss options for food and cleaning supplies, and anything extra you may need, like a refrigerator or safe. If you will be eating primarily at the hotel, speak with the Food and Beverage manager to identify some safe options for you prior to arrival.
27. Plan around your need to sleep. Flying is very triggering and you will likely need a lot of sleep to recover. Plan some days (or at least parts of days) with empty blocks of time for you to nap and rest as needed. About 1/3 of the days I spent in Asia were spent sleeping or awake but in bed.
28. If I am traveling domestically, I often ship supplies/meds to my destination so I don’t have to worry about carrying everything/luggage getting lost. You can ship medication to yourself in the US as long as you are the end user. For example, when I visited my friend Christen, I sent a package to Lisa Klimas c/o Christen [Christen’s last name]. Having done this with multiple operators, my best experience has been with the USPS. They were half as expensive as UPS or FedEx and the only operator to deliver the package on time (I ship overnight because I have refrigerated meds).
29. Discuss with your doctor whether it is appropriate to bring antibiotics/antivirals with you on your trip in case you develop an infection.
30. Identify a hospital at your destination in case you have an emergency.
31. If possible, have a copy of your doctor’s letter translated into the local language.
32. Try to be patient. Some days I am just so tired of fighting about shit with airlines but if you can stay patient, the likelihood of things working out better increases. It’s one thing to let a sick person fly, it’s another thing to let a sick and hysterical person fly.
33. If the flight crew is uncomfortable with you flying, they can refuse to let you on the plane. This is where having a fit to fly letter is very important. Emphasize that it is safe for you to fly and that if you have a severe reaction, you are capable of managing it on your own. If you are NOT capable of managing a bad reaction alone, I urge you not to fly alone.
34. Wear a watch that displays local time at your place of departure so that your med schedule doesn’t get blown up. If the time difference is substantial, you may need to take an extra med dose in the first 24 hours to align your nighttime meds with your new nighttime and morning meds for your new morning. Check with your doctor on how to manage this.
35. Have fun! Enjoy your trip.