10 Things Tuesday: Traveling with Cystic Fibrosis

Hello from Roma, Italia!

Last month, I boarded a plane to spend eight days in Rome. This isn't my first time traveling with cystic fibrosis and certainly won't be my last. And while I'm definitely not an expert, I've had my fair share of traveling oops-es over the years. As a result, I have learned a few tips to making your vacation both safe and enjoyable when dealing with a chronic illness.

For someone who has physical limitations or takes 20+ medications a day, the idea of travel can be terrifying. Being away from your routine, the extra walking, how on God's green earth you are going to pack and carry all of your medicine and supplies... It's no small feat, but that doesn't mean you can't still do it! You just need a little extra effort on the front end.

1. Forget crossing your Ts and dotting your Is... The most important letter is P! Plan, prepare and pack ahead of time. Like... way ahead of time. 

The most important aspects of traveling with a chronic illness are to plan ahead and be prepared. Honestly, most of the next nine tips are some variation of this. I'll get into more details as they pertain to certain issues such as carry-ons, accommodations, itineraries and travel buddies, but the very first step is to pack your bag.. and pack it early! I am literally probably the worst packer in the history of the mankind. If you have any doubt, ask my sister Jenny who during one trip, managed to repack my one full size and two carry-on size suitcases into just one full and one carry-on because she's a wizard like that. She will probably say otherwise... but I have gotten slightly better over the years. One thing I did in getting ready for my trip to Rome that significantly reduced my pre-trip anxiety was that I packed every single one of my medications and supplies five days before I boarded the plane, the earliest I ever have! Doing this so early ensured that I could take my time and make sure that I had everything I needed and it fit into my bags. It also gave me several days to mull it over and remember the extra items that I didn't think about the first run through. Far too many times have I packed the night before or even morning of a trip, and 12 hours later when I'm already on my way, remembered something else I needed. This time, I can say with complete confidence that I had every single thing I needed. Looking ahead at my next adventures, I'm going to make it a habit to at least pack these medical essentials well in advance, even if I still have some room for improvement on the whole packing-way-too-many-clothes-at-the-last-minute thing.

2. It's okay to be both a packrat and a doomsday prep-er. And by that, I mean a) keep everything with you at all times and b) expect for the worst. 

Never, never, never under any circumstances put your medications or supplies in a checked bag. I promise the minute you do, it. will. get. lost. I've done it, my friend Gunnar's done it, we've all done it. Maybe it's just something that everyone has to learn for themselves, I don't know. All I know is it's a mistake I don't want to ever make again. All of your medications and supplies should go into your carry on. If you need to take three carry ons, take three carry-ons... Lord knows I do. Legally, the airline is required to allow individuals with medical needs as many carry-on bags as needed, with no limit to the contents or size (I mean, within reason. I wouldn't suggest trying to take a refrigerator box on board....). The 3oz liquid rule? Not applicable. Sharp needles for your insulin/port? Not applicable. If it's medically necessary, TSA cannot take it away from you. Yes, you will need medication documentation, so be sure to chat with your doctor to get a signed note prior to travel (and make multiple photocopies!). I also bring multiple copies of what is called my Care Plan, which is a single sheet that lists all my medications and doses, and I have my doctor signs it as well. It's not only a great packing list, but works as an end-all, be-all prescription pad.

You might have a chronic illness when...

your entire carry-on is filled with medications

Which is another thing.... a lot of websites will tell you that medicine needs to be in it's original packaging. I'll be honest, I did this for the longest time but I don't really anymore. I've probably flown on the upwards of 40 times in the last 10 years and I don't think TSA have ever actually checked the medications. They've asked to see my doctor's note a few times, but even that is more of a formality. Usually once you say "this is medical," they say okay, do the little bomb residue test and when it comes back negative, politely send me on my way. So yeah... I fudge a little on the "original packaging" issue. For pills, I put in the smallest bottle I can find and then if necessary, move the label from one bottle to the other. For things like inhalers and nebulizer vials, I take them out of the original box or packaging and put them into ziplocks, then cut the prescription label off the box and slip it into the baggie with the med. In most cases, the individual vials are labeled so all the extra packaging just isn't necessary. Be smart and don't mix things up so badly that you can't even tell what it is... but don't feel like you have to have display models ready for TSA to explain each and every item because tbh, in the grand scheme of airport security, I think your cystic fibrosis is the least of their worries.

Anyway, back to my point. Pack everything you need and don't let it out of your sight, but also pack extra. Be ready for things to go wrong. What if you do get stuck overnight because of a cancelled flight? What if you drop something? What if you get sick to your stomach and throw up all your pills right after taking them? Things happen and when they do, you don't want to be left in a vulnerable position. Having at least 2 extra day of everything is in your best interest. Another thing I've found to be extremely helpful is to pack a small arsenal of over-the-counter or as-needed medications in addition to your daily stockpile. Tylenol, some decongestant/cough medicine, anti-nausea pills, Miralax, you name it... it goes with the whole "prepare for the worst" mindset, but vacation is the prime time for your body to be like "naaahhh, I don't feel like working properly right now" (more so than usually, of course). It's better to be safe than sorry and have those extra meds on hand for incidentals, especially if you're traveling internationally. I have literally no idea what's considered "over the counter" medication in Italy (assuming I could even Italian...) so who's to say I could even find what I needed if I ran into a problem? Sure, I could research it, but packing just one extra ziplock with a few doses of the basics is a much easier and reassuring solution.

3. Knowledge is power. Know your rights, know the rules and know your options. 

This one piggy backs on the whole excessive carry-on issue. It's important to know before your trip what your rights are, mostly when it comes to flying. Yes, the FAA and TSA need to keep airports and airplanes safe, but not at the expense of your or any other individual's health. This article from the U.S. Department of Transportation gives a pretty good recap of all rights awarded under ADA. A few key highlights though... As mentioned, your medical supplies and equipment do not count towards your carry-on bag limits. You cannot be forced to check medical equipment (like the Vest, more on this in a minute!). You cannot be denied service on a flight due to your disability or equipment. And this one I didn't know, but if you choose to pre-board, your medical equipment takes priority over other passengers luggage and can be stored in closets if it doesn't fit in the overhead bins.

Okay, real talk. The Vest is the biggest nuisance to travel with. It's large, heavy and all-around obnoxious. I'm sure it's VERY annoying for flight attendants. I mean, it's very annoying for me so trust me, I get it and I am sorry. But I speak from experience when I say do not let airline staff push you around on this one. When I was 19, I was told that I had to gate check my Vest because it wouldn't fit on the plane. The flight attendant was rather rude but I was tired and I didn't feel like arguing. I figured a one time gate check wouldn't hurt because they insisted it would come right back to the airplane door after the fight and never go through baggage claim.... Wrong. It went onto the baggage carousel and got banged around who knows how many times. When I got home that night and opened the bag, the $20,000 compression was literally cracked in half and started smoking when I turned it on. Fortunately, HillRom has a lifetime warranty program and I was able to get a replacement at no cost. But the principle stands, it never should have happened. Fortunately, just last month, I got the brand new Monarch Vest System which is portable and going to be SO MUCH EASIER to travel with. I'm bummed it didn't' get delivered in time for Italy but super stoked to have it now. Stay tuned for more info on that!

My first time using oxygen on a flight

I think it also goes without saying that in addition to knowing what rights you have, you need to know what the rules are and what your options are in various situations. As I learned with this last trip, yes, you can have a portable oxygen concentrator on a plane, but they are very strict on which brands and how to handle the batteries. I almost didn't have oxygen on the plane and considering I was de-satting to 80% at altitude, that would've been a super long and uncomfortable flight. It's important to do your research beforehand to make sure that you are following any rules, regulations or guidelines. You can check TSA's website for details on different accommodations here. In addition to knowing the rules, you need to know your options for getting medical care at your destination. A quick Google search will show you the closest medical center. Make sure you have a copy of that address. Make sure you also know what your medical insurance coverage is for out of network providers or emergency rooms. When you need help, you need help, but if there's a way to do that so it doesn't cost several hundred dollars in co-pays, you want to know beforehand. It's also not a bad idea to consider getting travel insurance for your trip. I did for Rome because the trip was in the the fall/winter, a time when I am notoriously sicker than usual and because I booked the flight a year in advance. I had no idea how my health would be that far out, so for less than $30, I knew I would get a full refund of my airfares as long as I had medical documentation.

4. Use your resources and don't be afraid to ask for help.   

Also piggybacking on my last point.. it doesn't do any good to know your rights and options if you don't use them. One thing I have become a big fan of during my recent travels is using Wheelchair Assistance. Do I need a wheelchair because I'm physically unable to walk? No. Do I need a wheelchair because I have 25% lung function, numerous heavy bags of medical equipment and it's hard to quickly navigate the long distances between airport gates? Yes. This wasn't always the case though... For a long time, I wouldn't use any of the accommodations. I didn't like the outward display that I was "disabled." It's hard to be so young, desperately wanting to be independent, but having to face the fact that you need help. I was embarrassed. When you're in a wheelchair in an airport, a single airport staff member becomes your personal chauffeur and you get to skip all the lines at security, customs, etc. It's pretty obviously and I felt bad that I would get cut ahead cause I didn't think I deserved any special treatment. At first, I would only get wheelchair assistance when I traveled alone cause that was when I really needed it. And even then, if I had a long enough layover, I wouldn't call for the wheelchair and would just slowly make my way to my gate on my own, huffing and puffing the whole way. And when I traveled with family, I skipped it all together and ask them to help me. I have since realized though that just because I have ample time or able bodied family with me, doesn't mean I'm suddenly not disabled. I have legitimate needs and accepting the accommodations available to me doesn't make me a bad person.

Some airlines require 48 hours notice for accommodations, so be sure to call ahead to find out what they offer and how to use them. Wheelchair assistance is definitely one I recommended. Not just because you get a physical break from walking, but the priority access through security is helpful when TSA needs a little more time to freak out over the small pharmacy that is inside your carry-on. Another good one to ask about is preboarding. You can ask for this ahead of time, or just when you get to your gate. You will get to board the plane first so that you have time to get your small pharmacy on board with you.

5. Don't forget to check the fridge. 

This one I am notoriously bad about it... I pack all my medicines ahead of time, including those that need to be refrigerated, but I obviously leave them in the fridge until just before leaving the house. I couldn't tell you how many times I have walked out the door without grabbing said pre-packed baggie of refrigerated medicine though. And let me just say, this is particularly bad when you're an insulin dependent diabetic and your insulin is one of those medicines... #yikes. Sometimes, I am able to have someone overnight mail me the medicine or get my doctor to call in a prescription to a local pharmacy, but in other situations, I've had no choice but to go spend a few hours at the closest Emergency Room in order to get what I needed. It's a huge buzzkill so you're better off learning from my mistakes and just not forgetting the medicines to begin with.

6. If the plan doesn't work, change the plan, not the goal. 

Sometimes, your normal routine just isn't possible on vacation and when that happens, you have to be ready to improvise. For example, I have a feeding tube that I use daily to maintain my weight. I use three 8oz cans of a calorically dense nutritional formula overnight, which is roughly 1,100 calories.  Usually when I'm traveling within the US and staying with family, I'm able to ship the formula ahead of my time to my destination in a flat rate box from USPS. But for my trip to Rome, I was staying in an AirBnB so I couldn't ship it beforehand. Plus it was an international trip, so no flat rate shipping options and I don't suspect shipping 24 cans of liquid across the Atlantic Ocean would've been very budget friendly. I knew though that without my feed for a week, I could easily loose 5-8 lbs and that would be dismal for my health. So I needed an alternative. I wasn't sure what kind of nutritional drinks would be readily available in Italian supermarkets, so I decided to pack a powdered supplement from home instead. I did the math and figured out if I mixed two packets of Scandishake with water, it equaled 860 calories. Not quite the same as my normal feed, but much better than nothing! And the powder packages were much more travel friendly than cans of formula. As for the remaining 250ish calories I was losing, I figured the copious amounts of gelato I planned on eating would cover the difference.

Another substitution I made on this trip was that I did not take my VEST. This is a something I try to avoid, but sometimes it is necessary. The VEST is a huge nuisance to travel with because of it's size and weight. I made the decision to leave it as home for this trip because I just didn't want to deal with the fuss on an international voyage and I knew I could do adequate airway clearance with my handheld Acapella instead, as long as I was disciplined. In my opinion, the VEST is a passive way to do airway clearance because you just sit there and it does all the work for you. With the Acapella, you have to be proactive and force yourself to do it. When I was younger, I would sometimes half-ass or skip my airway clearance entirely so it wasn't reasonable to think I could make do with just the Acapella. But now, I know that it's necessary and I felt like I could handle it. Also, not sure if this is relevant, accurate or what.. but I know there are certain voltage conversions between the US and European power outlets so I wasn't entirely sure that my VEST wasn't going to start smoking when I plugged it in at the AirBnB so I didn't want to take that chance. My point being, sometimes your travel plans make it difficult to do things exactly the same as you do at home so be sure to give yourself some wiggle room and you can often find a solution that will work just as well for the duration of your trip.

7. Be realistic and be intentional. 

I'll be the first to admit that I have a bad habit of trying to fit 30 hours worth of activities in a 24 hour day. One of the biggest struggles I've faced over the last few years has been learning and respecting my limits. The same sentiment definitely applies to traveling. If you have a chronic illness, you may not be able to see every monument, museum or magical view. As much as you want to go go go, it's important to be realistic. You may be too tired or start feeling sick, but that's okay. If you start to feel crummy, take the afternoon to nap. You'll still be on vacation when you wake up that evening or even the next morning, and can still enjoy all the sights and sounds. You know your body better than anyone. You know your triggers and only you can be the one to decide "this is too much." So be honest with yourself and don't be afraid to give yourself some down time.

It's also really important to be intentional and prioritize your trip. Do some research before you go to decide what sights or activities are the most important to you. Do those things first! Then, if you do end up exhausted, you're not missing out on the things you wanted to see most. Bonus points if you can plan your days based on geography so you reduce the walking as much as possible. If you hit all your must sees, great! More time to explore and see the extras. But if you do need to rest, you can save them for a future trip.

8. Give yourself a vacation, after your vacation.

Whoever circulated the idea that vacations are restful had to have been on crack because I have yet to experience a trip that wasn't at least 37% absolute chaos and the exact opposite of restful. Maybe it's the whole "my lungs suck at being lungs" thing, but I find the actual traveling part of traveling to be pretty exhausting. I usually need at least a day to recoup after getting home from vacation before I'm back to 100%. For my trip to Rome, I was coming home on Sunday, but had already let my job know that I would likely be working remotely on Monday so that I could fully recover. Fortunately for me, that Monday was Columbus Day and my boss decided at the last minute to give us all the day off, so I ended up having all of Monday to rest regardless! Which was particularly nice since I found out as I was landing at JFK at 4pm on Sunday that my 5pm flight from NY to VA was cancelled. Delta rebooked my flight, but the new plane didn't land until 10pm and the closest they could get me to my final destination was an airport 100 miles away from my house, so I had a 1.5 hour drive after landing, which meant not getting home until after midnight. This brought my total travel time to 22 hours and would've made getting up at 7am the next day for work an absolute nightmare.

9. Be upfront with your travel partners and/or find a good travel buddy.

I save this one for the end because I know everyone has their own comfort level when it comes to telling others about their cystic fibrosis. I won't tell anyone that they have to disclose something they aren't comfortable with and I won't say that you can't travel alone... but I will say that I personally wouldn't ever feel okay during a vacation if the people I was with weren't aware of my medical needs nor do I look forward to situations where I have to travel by myself. I'm an open book when it comes to my health and I know that my friends and family have my back both at home and abroad. My mom and brother were incredibly supportive and helpful on this trip. They helped me cart my heavy medical equipment around the airport/the streets of Rome as we found our AirBnB. They also understood that my low lung function means I'm going to be quite a bit slower than your average tourist and they had no problem waiting for me when the walking/steps were a little more than I could handle. The same can be said when I travel with friends though. 10 years ago, I went on a student trip to England and Ireland. Two months before the trip, I got my gtube placed for the first time. Being new to the gtube world, I was irrationally terrified that it was going to be ripped out of my stomach at any given time. To ease my mind, my mom suggested asking my sister's best friend who was going on the same trip if she would feel comfortable helping me replace the tube in case something happened. Of course she said yes and my mom taught her all the steps of replacing it. I ended up having no problems with the gtube, but it made me feel much more comfortable to know that in the absence of family, I had someone else who was ready for worst case scenario. Again, it's personal preference, but I would definitely encourage anyone with medical needs to have an open discussion with your travel companions prior to leaving for your grand adventure.

10. Have an amazing time!

#notamused

I feel like this should be a given... but ENJOY YOUR TRIP. Yes, it's scary. Yes, it makes you anxious. Yes, something could go wrong... but those aren't reasons to not go or not try. You are capable of more than you realize and you deserve the opportunity to explore and experience the world, healthy lungs or not. Do your prep work ahead of time, but once you step on that plane/in that car... don't let your disease hold you back. In Rome, I had the chance to climb to the top of St. Peter's Basilica. Before we went, I read that it's over 300 steps. I absolutely loathe stairs and climbing, and originally, I thought to myself "there's no way I'm doing this." Once I got there though, I changed my mind and decided to give it a shot. It was hell. Like my lungs HATED me... but I pushed forward and made it to the top. And boy, was it worth it. The view was unlike anything I've ever seen. I am so, so glad I decided to do it, despite my doubts and fears. A year from now, I'm not going to care that it took me a solid 5 minutes to catch my breath before I looked out at the horizon. I'm going to remember the experience and how enchanting it was to look out over an beautiful, timeless city that I had dreamed of visiting for so many years. 

Things about today that sucked: Climbing 300+ steps with 25% lung function

Things about today that did not suck: This view

To wrap things up... traveling with a chronic illness is a challenge, but it's worth it. It's important to be prepared, but it's more important to be present... Happy Tuesday and happy traveling!