Podcast: Bryce on travelling with CF

Transcript

Voice over: Welcome to the CF Strong Podcast. CF Strong covers the successes and challenges faced by those living with cystic fibrosis. You’ll hear first-person stories, conversations with health professionals, friends, and partners. Just a heads up, guests may share their personal views about treatments and health management, but please remember, this is not medical advice and you should always follow the advice of your clinic team regarding your health.

Sam: Hello and welcome to the CF Strong podcast. Today we have Bryce Blackmore back again. Today we’ll be talking about traveling with cystic fibrosis. Myself and Bryce are both pretty avid travelers. We wanted to come together and discuss our experiences and maybe even share some tips and tricks with other people with cystic fibrosis who would like to travel. Like we want you to know that’s possible. Bryce, would you want to start by maybe just telling us a little bit why you believe travel is so important and how come you have done so much travel in your time and also where you’ve gone?

Bryce: Thank you. Travel is really important. Well, I mean, it’s for multiple reasons. I probably didn’t know exactly what I was going to get out of it when I first started traveling. It all began when I was a kid. My parents are very avid travellers as well. They’ve travelled all over the world much before I was born, and they continued to do so. They had that passion already. When I was born, they wanted to continue that.

They took us to places like the usual kind of destinations, Bali, et cetera Thailand and then that extended to America when I had, I was lucky enough to have a make a wish to Disneyland when I was a kid, which was extremely lucky. Then I just kind of ignited something inside of me and my family and my brother as well to just continue traveling. They were always big on going to weird and wacky places and not necessarily all the tourist stuff and getting us to kind of be a little bit independent when we were traveling as we kind of moved up in through the ages.

Then just wanted to see the world. It was just too much to see and not enough time and realized that if I’m going to be here, let’s just get everything and gym pack it in there as much as I possibly can. It just sounded like the best thing to do. Any opportunity that I had, as soon as I finished school, I jumped straight into a degree in teaching and science degree and then immediately just kept saving money to travel and every holiday break at the end of the year from uni I’d always just go somewhere different.

Third-world countries were a great place to start and then extended out to Europe and then a lot of other travels. I’ve kind of done a lot of Thailand, Vietnam, Cambodia, that area Bali, Americas, Canada, and then a whole heap of countries through Europe, India, Nepal. Yes, a lot of them. I just absolutely love it. I mean, there’s just so much to get out of traveling about learning about who you are and then just seeing different people, different traditions, customs, how the world works outside of our little bubble. It’s got everything to give and it takes very little away from you. I think it’s just worth doing for everybody.

Sam: It’s interesting actually because what you were saying before about your family being very avid travelers, it’s very similar to me because when I was younger, my parents took a massive risk and relocated to America with like three younger kids. Because they’ve always been all about travel and adventure. We lived there for like two and a half years pretty much. That really kind of started our spark too and then from there, our parents-

Bryce: Sorry to cut in on you. Do you think that happened because that’s all right of having yourself with CF or were they travelers beforehand or is it more like this has happened and they just wanted to shake things up and try something different and new? Or do you think it was going to happen regardless, they were just always going to move somewhere? Or did their perspective change or anything regarding that?

Sam: Yes, it’s actually a really good point to bring up because my parents always massive travelers. They were, ever since they got married, they were traveling the world and they’ve always loved doing that. They’ve always been a big they’re always put on the kids like to want to have a big adventure, like life should be an adventure, should always go out and do these kind of things.

I think when I was actually born with cystic fibrosis, I think that spark in them diminished a little bit because they were so, I guess so concerned about my health primarily. I just don’t think they ever thought it’d be possible to be that kind of family, if that makes sense. During as I was about six, seven years old when we relocated, and I think at that point I had shown that I was actually doing quite well.

I was quite lucky to be as healthy as I was. It kind of like made my parents realize, oh, maybe we can do these things we love with our kids. They took that risk to go overseas and it changed all our lives really, because then after that we came back to Australia after a few years, and then from there we always looking for the next big thing as a family we did. Went to Dubai, we went to, we did a eight-week trip in Europe where we just backpacked as a family.

Then since then that instilled in us kids. We wanted to go do that rest of our lives and in my gap year, I went traveling for two to three months. I think it was around about that much might be a bit less. It just, as you said, it really came from the family and it really pushed us. The whole cystic fibrosis part of it, I think it’s just understanding that, yes, it could be at risk, but you’re really going to outweigh the benefits compared to the risk because as you said, there’s so much you can gain from traveling. What about yourself?

Bryce: Sorry, I keep cutting in on you. Do you think that the locations that your parents chose early on including going to America and then places that you maybe picked to go first were changed as a result of you having CF, maybe going somewhere that you might have had healthcare or easy access to drugs or anything like that, or just easy way to get out of there. I know we kind of went to Bali and Thailand that are reasonably easy to get home from if we needed it.

Do you think that changed or do you think that the choices and where you’ve traveled since has changed as a result of you knowing your body better or you just got a bit more advantageous with it and adventurous? Sorry. or how did that kind of change?

Sam: Well, I think the choice of America was very much. It was for my dad’s works, obviously there was only limited amount of choices, but one of the other choices was China, which was definitely considered. I think the America was definitely a safer place in regards to healthcare, even though the American healthcare system isn’t amazing. Yes, that was definitely a major one.

Then expanding on that when we went to Europe, I think we definitely stuck to West Europe a lot more so like England, France, Belgium those kind of countries where again, it’s quite, it is definitely a safer aspect. I definitely, as I got to know myself and my body, I would definitely been taking more risk as I traveled because I did know myself a lot better and I did know how to look after myself.

When I did my own solo travels, it was Nepal Thailand, Vietnam. It was like off the beaten track a little bit as well. I was taking like a long times away from like, civilization and say Nepal, because I was working in Nepal and I was working up in the mountains in these remote communities and things like that because I trusted myself and I backed myself and I knew I was in a good position to be able to do that kind of stuff.

I think it definitely, I say for other people wanted to travel, I would say definitely start by looking I guess knowing your exit route, if that makes sense. You can go into travel, get the best experience.

Bryce: Having a plan.

Sam: Yes. You know that there’s a safety net and because it is so important to have that safety net because you could be stuck in a country where you just having a huge health crisis and you just have no way to get out or no way to get what you need. What about yourself? Did you ever, is CF always a big thing on your mind when you start planning your travels? Or do you, does it come I guess, in the background?

Bryce: Good question. I think it really kind of depended on where my journey was with CF at the time. I think early on we definitely went with safer, mostly because maybe I wasn’t as mature or I wasn’t as confident in my traveling abilities and so places like b and m and Thailand are fairly tourist-happy or friendly makes for an easier trip traveling experience

Also allowed for things, like you said, just having a better exit route in case something were to go wrong. It’s places that I know I could get out of or get help or attention when I needed it so not taking as many risks there. As time goes on and I’ve learn my body and know when it’s going to crash which just takes time. There’s no kind of rule book to that. It’s going to be different for everybody.

I’ve just learned how to read the warning signs and then also how to maintain my health with bouts of time where I don’t have access to certain facilities what I can do to kind of get myself through it. Because I’m not always going to be able to go for a 5K run in the morning because I might have to be catching a train that’s going to go here and there and there. I’m going to be on a bus for hours. Is that going to be okay? Will I be okay with that?

If I miss a training day or I won’t be able to do a pet mask or nebulizer or something like that can I get away with it, you know? Is it going to have a negative impact for the long term? Because I travel for six months in one of my stints and when I was traveling there, I pretty much very, very rarely had any physio. Which sometimes was good, sometimes was bad. I just didn’t have access to people to be able to come and go to a hostel and kind of bash on my back, it makes me awkward.

Sam: It’s kind of a hard conversation to have with other tourists.

Bryce: Totally. I had to resort to obviously like pet masks and things like that, but also just keeping up on my training regime and making sure to take days if things were starting to crash and things weren’t going so well to stop and not keep moving. Not always be on the move and kind of schedule in some rest days when I’d look after myself and my wellbeing, mental health as well, and make sure I stayed on top of all those kinds of things.

I’d be making sure that I was out running a lot and just doing implementing an exercise regime that I knew that I could use because I’d been doing it at home to practice it at first to make sure that I kind of practiced the things I was going to to do out, out on the road before we left, so that if things went wrong here, I’d be able to sort it out pretty quickly.

I could kind of use it as like a test track to just know how my body’s going to react and doesn’t need certain things. That’s going to be different for everybody of course. My body at the time didn’t need that particular like daily physio, et cetera, so I could get away with that. It was fine and there was no problem, so I could manage to spend that six months overseas.

Things have changed over time and now I’m pretty much loosey-goosey with it because I know exactly what I do and don’t, don’t need to do. I can pretty much go anywhere and I know I’ll be able to make it work as long as I’ve kind of prepared myself and my body for it depending on the scenario where I’m going from climbing mountains or whatever. It’s all good.

Sam: It’s trying to, that’s one of the hard things I’ve always found is trying to find the best balance, I guess. When you’re trying to be out in the world experiencing everything you want to experience, but also knowing that you still need to put time aside for your own health, such as exercise in the morning or your certain nebulizers. Even like trying to fit your nebulizer and all your medications, your backpack, say if you’re doing a more of a solo backpacking trip, there’s all these extra things you really got to try and balance out.

Did you have any tips or any tricks you’ve done over your time to make sure that you’ve been able to not only carry all the medications you may need, but also trying to find, I guess the right times and places where you can do, say nebulizers or if it needs to be plugged into somewhere? Or like pet mask or just certain physios?

Bryce: I mean that’s a tough one. For medication, so I had six months of Creon. I couldn’t tackle all of it at once, so I think I did it in two or three loads. I got someone to send some medications through the mail so that I could pick it up partway through. Or also some family met me and they brought some with them which made it a bit easier but for my like one-month stints when I take students over to third world countries it’s a bit harder over there.

I’ll take a month’s worth of Creon, which just means I got to take a whole ton of the stuff. That’s just what you got to do, it’s not that bad. It’s just a few extra grams really. As far as other techniques and things, I have a very small kind of portable nebulizer, which makes life really easy. Now with vaping being a big thing, it doesn’t even look that much different than a vape. It’s like, as long as I don’t mind looking like someone that’s vaping, which I kind of do, but as long as I don’t mind that too much, I can kind of get away with it anywhere.

Sam: It’s just a fancy new vape.

Bryce: Totally. It’s way too big for a normal vape, but, you know you just got to, you just, I mean, ultimately I’m here, I’m never going to see these people again. It doesn’t affect them at all and me being here is more important than what they think this guy’s doing a vape of some nebulizer stuff. I don’t really care about that kind of stuff. I just kind of do it and move on as long as it’s not impacting other people.

Usually when I was in hostels I just make sure that nobody was around when I was doing those. Or I’d talk to them beforehand and say, Hi, this is the deal. I’ve just got to do these things. I hope you’re okay with it. If not, I’ll do it later. People were generally pretty cool, or sometimes we might’ve even just waited until there were times when we just decided to get hostel rooms that were just for us we had a small group of people at times.

When it was just us in the room, it didn’t matter what we were kind of doing so I could do all my medications and things in those times. Like I said, I kind of had practiced and knew exactly how much I needed to do or didn’t need to do so I could get away with a few days here and there where it was busy or uncomfortable with 10 or 15 people in a room. It’s just not going to happen.

Sam: I’d say I think that’s a, the one of the main things that I definitely realize, and as you’ve been saying a lot as well, it’s just really practice makes perfect and you can practice these things at home, like practice I guess what you can do in certain situations or practice carrying your meds and backpacks and practice. Just all those kind of things and working out the best way to do it.

When you’re on the ground a different country, it’s not all a new surprise for you and not all like a scary thing as well. Going on to as we’re talking about meds, did you ever run into an issue on, say, a border where you were carrying meds in a backpack and it caused maybe some suspicion from guard, border patrol? Anyone or anyone. Customs and stuff like that.

Bryce: I feel like this is a loaded question. I feel like you’ve had some problems.

Sam: Well, I’ve had, I’ve only had one. I’ve only had one major one, and it was awesome. It was when I went to America, actually, and I was only a six, I was six years old and I was carrying my creon in my pocket. This is back in 2000, I want to say 2004 or 5 and back in that it was I mean, security’s still really tight now, especially in America. Airport security was something else. It was, I remember being very anxious in an airport, it just seemed very tense, but obviously the whole makes sense why it was so tense.

I was a six, 7-year-old kid going through a scanner and I got pulled aside, taken up to this little, like, taken aside by these two big security guards who were questioning me about my creon in my pocket and I was very unsure how to handle that situation as a young kid.

Bryce: That’s pretty fair. That’s a bit mistake.

Sam: That was just one.

Bryce: Totally.

Sam: I was like, oh man, they’re going to arrest me or something. It was, it was intense.

Bryce: I think the states is a bit of a unique scenario. I’ve never really had too many whenever I’ve gone overseas, I keep all of the majority of the medication in my big bag. I try not to carry like large amounts in a small carry-on. I know that’s some people might see that as a bit risky, but I just don’t want to have to have that conversation as I’m walking around an airport.

It’s never really been a problem as long as I’ve got enough that’s on, in my carry-on to get me through seven days or a few days worth that’s enough to get me by. I’ll make do, I’ll make it work. I’ve usually, for the longest stints or places where I know there might be some issues, I’ll usually get a certificate written by the doctor to say, what is this medication. What is it used for and this is the amount that was initially kind of dispensed so that they’re aware because when you’re looking at Creon, you’re talking several hundred pills and that’s only getting you through a few days depending on how much you are using.

It’s very easy for just the common populace to think, wow, that’s enough to be a supplier, but a few hundred in going to get you very far. It’s kind of getting them to understand that we use a lot more than they probably think, not just like Panadol or something.

Sam: It’s a hard one.

Bryce: Yes, absolutely. Just having some sort of written letter that goes with it has gotten me out of, I think one time where we’ve had to have a conversation, but it was so minor. I don’t even remember where it was because I had a letter and they didn’t seem to have a problem with it.

Sam: That’s a good point too. The doctor’s letter is a really important thing to have I’m sure, but it’s also one of those things I’m sure every doctor will tell their patient before they go overseas. It’s a really good to have a plan with your doctor, like your specialist too, they know you’re traveling. They have given you a letter of to explain your medication and they also have an idea of your itinerary and you have like a little plan with them.

If something does go wrong, you can email them straight away and get something sorted. Definitely work with your doctors. If anyone who wants to go traveling, who’s listening, definitely work for your doctors because they want you to also survive when you’re traveling. They’ll help you out the best way they can.

Bryce: With that, there’s countries that reciprocate the Medicare stuff as well so that there are safer countries. If you’re someone that’s susceptible to some sort of exacerbation or hospital admission. There are places you can go that are not going to just to totally destroy you. Like you might have in America, say if you didn’t have insurance or something. There, of course there’s insurance that you can get, but not everyone’s going to be able to get insurance.

I’ve been able to get insurance most of the time I’ve traveled, which is really, really nice and feels good knowing that I’ve got that insurance. Trying various places and there’s some that will and some that won’t, but you just got to keep trying. I don’t really have the answer for what is the perfect insurer for that kind of thing, but trying multiples and then understanding that some places will have that kind of emergency medicare reciprocation, I believe that helps out as well in case you do get in those big, big trouble scenarios.

Sam: Having a plan for those big scenarios is just always so important and as you were saying, it’s just really good to know what countries do what in regards to Medicare because it is just nice having that little bit of a safety net.

Bryce: Have you had any exacerbations or hospital admissions overseas? Did anything, has anything drastically gone wrong that you’ve had to like kind of really worry about?

Sam: No, actually I’ve been quite lucky with my travels. One thing, one small thing in America, but I don’t even know if it was CF-related or what it was we were doing a bit of a road trip down the coast in the caravan, and somewhere down in Florida, I had this horrendous asthma attack. I couldn’t, I’m not sure if it was anything to do with CF or I had some, I just had a really interesting asthma episode.

It was quite intense and I remember not being able to breathe and it was terrifying and obviously our RV was hooked up to the campsite, so we couldn’t race out of the hospital, so we would try to I don’t even remember exactly what happened, but we tried to call the hospital to see what was happening and one thing led to another and they sent an ambulance to the campsite.

I remember they, it was so intense, the ambulance it came in and they got people to get out and like control the traffic in the campsite and like, they sectioned off the entire camp so no one could come in and out. They wheeled me out of the the RV and I didn’t need to be wheeled out. I could have walked, it was just very over the top. Then I had a ride in the ambulance and then I can’t remember how much that cost my parents at the time, but obviously they’re probably well insured.

I just remember that as being a really interesting scenario because that wouldn’t have happened in say, Australia. It was just a very over-the-top response to asthma attack. That was the only real thing I have experienced. When I was in Asia backpacking, I got a chest infection at one point.

Bryce: That’s a pretty common one, isn’t it?

Sam: Yes, definitely. I just I had antibiotics on me because I brought some emergency antibiotics in case I needed them. Just a case of those for two weeks and that cleared it up pretty well.

Bryce: That’s my next kind of like, part of the medication thing is having an understanding of how your body’s working and the telltale signs for some infection because that’s the most likely thing that’s going to happen with me now is some sort of chest infection. Knowing what those signs look like and then having a backup set of antibiotics to go on if you really need it has been part of my medication that I travel around with as well as the Creon.

Any sort of nebulizing and stuff like that. Having that antibiotics ready to go is a hundred percent one of those things that I’d encourage and I’m sure the doctors would they have recommended for me to.

Sam: Definitely. It was a conversation with my doctors about which antibiotics serve me the best with all my most common chest infections. Knowing that, having the backups in my travel bag as well. One thing going on with that as well, medications is not storing all your medication in one bag. That’s one big one I’ve run into as well. Obviously in your big backpack when you’re traveling, you keep everything your majority of your say your Creon will be in that one backpack.

Always make, I always try to make sure I have at least one close to full container on my, like my small backpack I take on my day trips or that’s just that, just in case you lose everything all at once, it’s just absolute nightmare. That goes with, I’m sure that’s just a part of all travel tips as well. Always don’t always keep all your eggs in one basket, if that makes sense.

Bryce: I ran out of Creon, I ran out of Creon, I think in India in one of my travels. The best part about India is that if you’ve got a bit of money, you can get anything done. I just walked down to a random road, there was a pharmacy there and was like, have you got some Creon? He is like, “Yes.” I was like, “Sweet, let’s go”. Whereas other places,  you have to go see a doctor. I was stoked that it was India.

That was the problem, was the place that I had that happen because trying to budget out a month’s worth of Creon is, Creon can be hard, especially when you go to places like India with really fatty meals,  and you never know how much you’re going to eat. I loved Indian food, so I just went over the top and ran out. That was a time when I got out of trouble but having that back up and making sure you’ve got extras is really handy.

Sam: 100%. We’ve got to finish up the talk soon. Before we do that, I just wanted to ask you if you had any advice, any last advice for any aspiring travels or cystic fibrosis or any words of encouragement for them before they do, before they set off?

Bryce: I mean, you’re crazy not to, right? It’s just, unless you’re in one of those circumstances where it’s just too dangerous for you and that’s going to be a conversation you have with your family and your doctors sticking around, sitting in your house is just not an option, right? It’s just not an option. That should not be an option for you. You need to get out of here, you need to get out of your little bubble and start seeing the world.

If that’s going to take taking your whole family with you or taking a million friends with you, you got to make it happen. It’s just, it’s too important and too it’s just things we just got to go see the world. The world’s much bigger than our backyard and there’s just so much to see and the most interesting and amazing things I’ve ever done in my life. A lot of them have been overseas.

Running with the bulls, jumping off the Mossa bridge, seeing the Northern Lights is just a million things that I’ve done overseas that I just can’t get here and it just teaches you so much about yourself. That’s important too. Getting through CF and understanding who you are and what your purpose is and the things you like, the things you don’t like that’s all part of the plan.

Getting out there and seeing the world is just the first step of it. I kind of see it as something that we should all be doing and you’re missing out if you’re not going out there planning something. It doesn’t mean you have to be going to the middle of a jungle in Cambodia somewhere. It could be as simple as going to just literally the closest nation of New Zealand and going to see some of the most beautiful, spectacular scenery that that is there.

Nothing’s wrong with that. That place is awesome, right? It’s safe and it’s easy and it’s not that far away and everybody can do it and it’s not particularly expensive, so there’s no real reason not to be traveling. There’s lots of reasons to be traveling. Get out there and really having CF just meant that I got up at five or six in the morning almost every day, traveling and going and seeing how the locals worked.

That’s one of the best parts of that I find in traveling is seeing people in their place of residence or working out early in the morning and how the world works is amazing. It also gives you those added bonuses that maybe everybody else that’s just sit, sleeping in bed, they miss out on that stuff. That’s forced me to see the world in a different way as well. There’s bonuses that come with having CF as well that you may not get if you were considered, you know normal or without CF, right?

There’s bonuses in ways, shape, and form, and I would encourage everyone to do so and not to be scared by the medication or anything like that, and just to jump in, have those conversations and get the ball rolling because you won’t look back.

Sam: Yes, it’s exactly right. I feel the exact same way. It could be, it’s a scary leap I guess, especially coming from growing up with cystic fibrosis, it could be scary to get out in the world, but you need to do it. It is something, if you get the opportunity to do it, it will, it just shows you how much more is out there and you need to prove to yourself that just because you have CF you’re not held back. You can still do everything you could ever want. Get out in the world and enjoy it.

Bryce: Then some, right?

Sam: Yes. Exactly.  exactly. Hundred percent.

Bryce: Like we talked about last time, it’s all about just understanding that,  like we’ve all got so much time on here, so let’s take advantage of and get as much done as possible and squeeze as much out of this life as what we can. As we talked about before, that we have a bit of a different perspective than a lot of other people do. Let’s take advantage of that and do some pretty cool and crazy things while we can.

That’s afforded me experiences that arguably a lot of people will never have because they were never willing to take that leap but having CF has pushed me to do things that I maybe would not have done if I didn’t. That’s pretty cool. I rate that, so.

Sam: Exactly. Well, thank you so much for coming back on the podcast.

Bryce: No worries.

Sam: Great to talk to you again, and hopefully we can talk again soon. Excellent. Thanks very much.

Bryce: Thank you guys.

Sam: Thanks for listening everybody. See you.

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