Tips for CF Vacation

After a seemingly endless winter here in New York, a few of my friends and I decided it was time to get away. Check out my buddy Dave in the picture above! We buried him (when I say we, I mean my other friend Joe did while I sat there reading a killer book because I have more sophistication than they do) in the hopes that it would spark conversation with a group of chicks on the beach. Unfortunately, the plan didn’t go as we hoped, but we got that awesome picture. We scheduled a trip to Miami in anticipation of finding Pitbull and Kim Kardashian. Just kidding, Kim really isn’t in my crowd, sorry Kim. Anyways, while Miami was awesome and I came back with a really awesome tan (sunburn), cystic fibrosis doesn’t always make travelling the easiest thing in the whole world. It’s funny because I received an “Ask Gunnar” email this week from a CF mom, Juliana, asking about a few tips ahead of a family vacation.

I think the worst part about having CF, other than you know, the sickness part, is the maintenance associated with the disease. There’s a lot that goes into daily care, hours of treatments, hundreds of pills and a million other things, so is there a way to make travelling completely stress free when it comes to going somewhere as, or with, a CF patient? The honest answer is no, but here are my tips to make it as easy as possible.

1. Do not forget anything

We’re going to start off with probably the most important tip here. Don’t forget anything. Do you have a list of your medications incase (you better have this list) you ever need to go to the hospital? This is the moment to utilize that list. Make it into a checklist. In fact, pack that list after you’re done checking things off because, what if you have to get admitted to the hospital in whatever city you are travelling to? Back to the point, though, do you have enough medications to make it through your stay? Do you have any extra medicine packed incase something spills or you drop something on the floor and realize the 5 seconds rule is a myth? Go through the checklist and organize a day or two BEFORE you leave. Don’t have an “oh sh*t” moment when your 30,000 feet over the Pacific Ocean and realize you forgot your enzymes back home. If that happens, your fun trip to Hawaii will be spent on the toilet instead of on the sandy white beaches.

2. Know the airport/airline rules – the Vest

You have a genetic disease, so you might as well use it right? Most airlines (I say most because I just have no idea if this is true for all, but I would imagine it is) must let you carry on the Vest. The Vest is huge, you know it and I know it. It’s also very expensive and dealing with insurance companies to get a replacement is no small feat, so let me give you a word of advice, DO NOT CHECK THE VEST AND SEND IT UNDERNEATH THE AIRPLANE. CARRY IT ON WITH YOU. It is as simple as asking your doctor to write a note for you saying that you are under his or her care for cystic fibrosis and that you have a lot of medical equipment that you need to have on the plane with you. You are allowed (honestly if you are flying an airline that doesn’t allow this, then you need to reevaluate your decision making process) to carry all medical equipment on board with you, even if it requires more than one bag. I’ll give you another tip here for free – I won’t make it a separate bullet point. When you get to your flight’s gate, ask the gate agent if you can pre-board because you have like 15 bags of medicine with you. Even though that person who works for the airline takes a beating from unhappy flyers every day, he or she is still a human being, and will most likely sympathize with you and let you pre-board, giving you a chance to take up as much overhead compartment space as needed for your medication.

3. The mask

This one really only applies for flights, or if you are stuck in the 1800s and are trying to travel across the transcontinental railroad to find the gold rush in California. Road trippers need not read this one. Please wear a surgical mask. Don’t get sick and spend meaningful days in the hospital. I want you to stay healthy, you want you to stay healthy, so do the right thing. 3M actually makes really good masks that have filters in them that last for a few hours, check out their website and buy a few for that next trip to somewhere sunny. Also, as a bonus, if there aren’t assigned seats, you will probably get your own seat and the opportunity to stretch out. Remember no one likes associating with or sitting next to the sick kid, whatever that means.

4. The extra day

My dad is a huge proponent of this one. He encourages me to dip into my pocket a little and get to wherever I am going an extra day early so that I don’t have to fly first thing in the morning and deal with the hell that is associated on a crazy travel day. Here’s my example: (If you are just joining us at bullet point number four, my friends and I did a long weekend in Miami.) The plan for the Miami trip was to get on a flight at the crack of dawn last Friday morning so we would get a full beach day. Like any reasonable son, I like to keep my parents updated on what I am doing, so I mentioned the plan to my dad. He said, “why don’t you take Thursday off, go a day early and book yourself on a flight at a reasonable hour so that you can effectively do your treatments in the morning then head to the airport.” I couldn’t really think of a reason to say no, so that’s exactly what I did. I took a mid day flight and got to Miami Thursday afternoon. It was totally great. I didn’t have to rush through anything, and most importantly I was able to effectively complete both of my treatment sessions that day. The next morning while I was on the beach sipping some exotic drink (ice water), my two friends arrived at the hotel looking like zombies.

5. Cleaning the gear

Okay, this is the big one we were all waiting for, because for some reason there is always panic (my house included) surrounding this topic. So, this is what I like to do. A friend of mine with CF (sup Amy) told me that when she travels, she buys disposable Neb-T’s. Remember, Neb-T’s are what I call the things that you put the medicine into when you want to nebulize it, sometimes they are referred to as “neb cups” or like a million different other things – I just happened to settle on Neb-T. For the record, I have no idea if what I just said makes sense. I don’t even know if “nebulize” is a word, but we are just going to pretend that it is for the sake of that sentence making sense. Anyways, I have recently started throwing those bad boys out after one use when I go on vacation. The benefit to having the disposable Neb-T’s is that you can just throw them away and not worry about cleaning them as the trip goes on. The cleaning process is an extra 30-45 minutes that you don’t need to be spending in the hotel room each day, while you could very easily be skiing down a mountain or hanging out on a beach. Obviously this only works if you are going away for a few days or maybe a week. This is not something you need to be doing if you are going away for a month. Traveling with 472 Neb-T’s takes up a lot of space if you are going to be gone for a long time, so if you are the type of person to go away for months at a time, then you will need to bring the electronic kettle that I talked about in my last blog post (which you can find here: http://gunnaresiason.com/cf-life-hack ). Typically if I am going away with true Neb-T’s, not the kind I can just throw away, I clean them in a Tupperware container or one of those things that you bathe newborn babies in. I have no idea what that thing is actually called, my mom got me one before I headed off to college 6 years ago, and it’s made it with me this far. And to answer your question, yes, I take great care of my Neb-T’s, they are as valuable to me as a newborn baby… only the best.

6. Be smart about where you are travelling and who you are traveling with

For most of us, college is over. It’s sad, but it’s the hard truth. Every single vacation with the bros doesn’t need to be reminiscent of that killer spring break trip when you were 20 years old junior year of college. Like I have said time and again in my blog, I really do think that we live our lives through a vast collection of experiences, and one day, hopefully, we will all have an enormous memory bank to look back on and smile. It’s important to have those memories. Every memory doesn’t need to include some crazy party on a beach in some far away place. You also won’t be living much longer if you have CF and make it a habit of getting trashed on the beach. Sorry, you just cannot live that lifestyle; it’s not in the cards for us. Accept it – I have. So, if you’re going away to the beach for the weekend, let’s tone it down on the whole spring break thing. Yeah, that might be fun for one or two of the nights, but not all five or six, you aren’t in college anymore. If you’re in college, well you’re on your own there, I have no advice for you, good luck and God bless. I did the Spring Break thing – it was fun, but never again, that’s all I will say on the matter.

As for who I travel with, I am very fortunate to have an amazing group of friends (like I said in this blog here http://gunnaresiason.com/friends-are-everything ). They all have my back in any situation and they can tell when I have had enough, or if I am struggling. I don’t think I need to say much for this topic because I have already laid out an entire blog for it, but basically you just need to be smart about who you surround yourself with.

7. Enjoy the trip, let it all go

A vacation is exactly what it is meant to be. Relax. Live a little. For me, the only reason I spend so much time dealing with the nightmare that is cystic fibrosis is that I give myself a chance to live life. The fight is only worth it if you make it worth it for yourself. When the cure finally does come, I promise you, you will want to be in good enough shape to enjoy it.

8. Bonus tip*****

Okay, this one is very important and it doesn’t only pertain to people with CF, and let’s just say this issue might be a little bit more widespread in the “city where the heat is on.” If you are like 45 years old, plan a trip to say, Miami, and you want to “hit the club with your boys” to prey on young college girls, you’re doing the whole life-thing wrong. If you have your top 4 buttons undone and your grey hairy chest is sticking out, you aren’t helping your cause either. Reevaluate your life and figure it out. I think it’s time to hang it up at that point. Take a page out of my book, not one of the million socialite idiots that dominate the E! Channel and MTV – have some respect for yourself.