International Travel

[Rickengelage]

Hello everyone,

im 20 years old, cultured with B.cepacia, and diagnosed with CFRD.

I would love to travel to alot of places, my goal is to travel to Brazil this year, I would love to visit the country,
though I wanna prepare right.

does anyone here have expierence with traveling international?
how did u do it with insurance, and taking your meds?
health care in that country?
and all that.

and also what were your expierences?
any trick and tips?

would love to here from anyone!


Rick.

 

[Twistofchaos]

Take a travel insurance even if your regular insurance should cover international medical costs. The travel insurance usually covers extra medical costs and makes things go easier should you need it.

What are your saturations? Cabin pressure is usually kept at about 2000 meters/6000 feet. If you have a long flight you could consider O2 but if your sats are normally say, 93% or above you'll probably be okay without it though you'll likely notice it. (I do. Slightly woozy, faster breath and a bit more pale and blue than normal and not because I'm afraid of flying, I love flying. I wanted to become a pilot/astronaut. Airplanes need to make more loops.)

I bring all my meds and take a doctor's explanation, his autograph and a list of my medication with me.

Sleep a lot! To not get sick and be in good shape throughout the day.
My typical holiday regimen is up at 8 in the morning, lights out at 9 at night but I enjoy active cultural vacations not the drinking kind. For that you could reschedule those hours a bit.

 

[Rickengelage]

Hey Twistofchaos,

Thanks for your reply!
my saturation is always between 93% 98 % so that should probably not be a problem, but ill disguss it with my doc aswell!
the flight will be about 11 hours long, I love flying too. its so relaxing and if the plane shakes, it only excites me for some reason while the rest freaks out. haha

thanks for your advice, hope you will achieve your goal of becomming pilot/austronaut! would be a great achievement

about the holiday regime, I also dont like the drinking kind, i like active holiday and just exploring the country really.
from Morning/afternoon/evening I chose two, one of them i just relax and do nothing, mostly that is the morning.
sleep out and do meds and take my time in the morning
and have fun in the afternoon and evening!

the thing im most worried about is taking all those meds with me in a country like brazil, and what i should do if I get sick there? I probably wont but if I do, I cant go in a hospital there, its not clean and high risk of infection probably, so how do you guys do it with health care in another country? are there international cf doctors/centers?


Rick

 

[Melissa75]

Rick,

hi, my experience is with Argentina, Brazil's neighbor, but I do have a Brazilian friend and I can ask her on Tues when i see her which hospitals have the best reputation in her home city.

That's the gist of the reply I'm posting here: In Argentina and maybe Brazil too, there are hospitals with outstanding services and ones that are not as highly regarded. This is similar to U.S. cities, I believe.

If you are planning to go deep into unpopulated areas, then I don't know what you'll find. But even the small cities - if it's like Argentina - will have the better funded hospital.

My mom's family is from Buenos Aires, and I remember when my elderly aunt was sick, my other elderly aunt worked really hard to get her transferred to the hospital they preferred.

On a random note, I once forgot my albuterol and was able to walk into a pharmacy and buy it outright. When I'm in Buenos Aires, I stay in a residential city neighborhood in a small business hotel and they always have adapters and chargers in a box that I can borrow. On day one after that 11 hour overnight flight, I drop off my stuff at the hotel front desk, walk around, eat a meal and as soon as I'm able to check in usually 1-2 o'clock, I take a loooong nap, and go to bed early that night--which is a little tricky since the restaurant open for dinner around 8 p.m. or 9 p.m.

More people smoke in South America than the U.S. and cleaning products tend to be heavily scented, but I dont find it too overwhleming.

In my experience the food is outstanding and amply portioned for a good price with the help of the exchange rate.

 

[Melissa75]

I forgot to mention the most important part! My friend from Brazil goes back to Brazil to get any major medical or dental work done there rather than do it in the US.
This is not CF care that she seeks, but still worth noting.

 

[Melissa75]

One MORE thing . On the internet, you find a bunch of instructions on how to buy SIM card and install it in your phone or your phone company may tell you to get an international data plan. This is because if you use your data out of the country, you can rack up a bill in the multiple thousands of dollars very quickly.

After researching all of this a few years ago, though, I decided to just shut off data the entire trip. I relied on wifi and it was fine. I maybe sent two SMS texts that cost 40 cents each, otherwise I used whatsapp for texting. But you could use any Internet texting app, & I really didn't need the telephone for anything. I didn't answer incoming calls and google voicemail transcribed and emailed me vms. I asked my major SMS texting counterparts (kid carpool friends lol) ahead of time to not text me while I was away. Everywhere had WiFi and I never felt disconnected.

Edited to add: of course call your phone carrier to figure out the exact rates of everything. 1 year I know I made a couple of phone calls but I think they were under $10 each maybe $3?

 

[Katarzyna Antosz]

kasia in Brasil, hey Rick

Hey Rick,
at first Brasil is amazing, wonderfull
we live here. I am a mom of 10 years-old girl with Cystic Fibrosis.
take all your medications. if you out of creon, ursacol, you can buy it in drugstore. please, dont go to public hospital, if you feel unweel. its better spend some money and see private doctor.
we live in Vila Velha, state Espirito Santo. if one day you gonna came to Brasil, feel free to visit us. I can recommend for you doctors in state Espirito Santo, if you need.

 

[Rickengelage]

hey thanks for the replies!


thanks for the great tips.

I wont go to unpopulated areas. im planning to go to rio de janeiro
my plan is also just to use wifi while im there.
I knew going to public hospital wont be good idea, but im just wondering, what if I get sick? should I just make a plan with my doc, take some meds with me just in case.
I dont know if theres any cf docs in brazil? like international cf docs? if that exsists..

Thanks for the invite haha
I dont know if espirito santo is anywhere near Rio?

is it save for me to take all my meds into brazil though? like all my antibiotics, some needles, and also insulin for my cfrd?
would a explaination of my doc be enough?
maybe you know more about that

cant wait to visit brazil, should be amazing indeed!

 

[Melissa75]

http://www.cfww.org/pub/english/cfwnl/9/391/Brazilian_Cystic_Fibrosis_Study_Group

This is a good article to read about CF care in Brazil. Toward the end of it is a link to CF centers in Brazil.

As for medical equipment, diabetes is a worldwide problem, so my hunch is that TSA and other international organizations will be familiar with the items you'll bring...with Drs note as Twist mentioned.

I like the idea of your Dr writing a plan for you if you get sick. If it were me, I'd ask for copies of most recent cultures and list of antibiotics that the Dr would use in the event of an exacerbation. That said, once in a hospital, you should have new cultures done, and the antibiotics adjusted accordingly by the Dr in Brazil.

I'd also make sure you have a list of your meds and learn how to say the conditions you have in Portuguese.

The link to centets only works for me if I look at the cached site. Try this:

http://webcache.googleusercontent.com/search?q=cache:http://www.gbefc.org.br/articles/31

 

[JakeS]

Hi my name is Jake, I am 39 w/ cf. I would recommend taking a letter from your cf doc, explaining condition, and meds. Keep it with your meds. This helps with border guards, security etc.

 

[stephen]

I’ve flown from the US to Israel quite a few times (in fact I’m about to leave on another trip, G-d willing). To my surprise, there were never any problems taking medications or nebulizers. They’re always packed in carry on/overhead luggage.

In addition to my regular medications I always take an ample supply of antibiotics (Cipro). My experience has been to be more proactive in its use when traveling than I would be at home.

Also, with an FEV1 in the low 40s %, I’ve never experienced any problem with the reduced plane cabin air pressure.

While it can be helpful to take some type of letter from your physician, I would be very surprised if it would be of any use with airport security. I learned this the first time I tried carrying “classified” items on a flight for work. Presenting any document to airport security that you’re personally carrying is meaningless. They have no way to verify its source or authenticity. The letter however could be helpful if you needed medical treatment on your trip.

Medical insurance coverage is an issue you should definitely investigate. Some policies do not provide coverage outside the US. Thankfully, policies are available at fairly nominal costs that provide coverage in foreign countries.


Travel, have a great time, and return safely - and rejuvenated.

 

[Rickengelage]

@melissa75
@stephan
@jakeS
@Katarzyna-Antosz

Thanks for replies and tips!

I now have one more concern about traveling to big cities...
Poluttion!

Pollution in rio de janeiro is super high.
How have guys expierenced pollution?
Did u feel it effecting your lungs alot?

I really dont want this to hold me back from going places, but pollution is crazy high and can be having a negative effect and make it hard to breath.

So whats your guys expierences with high pollution areas?

 

[stephen]

How is your lung function? Anyone with lung disease should try to avoid areas with high air pollution.

 

[Rickengelage]

Hey stephan,

My lungfunction at this moment is 65%

I know its best to avoid any risk factors but i wanna live aswell, and see places...

How are you doing since kalydeco?
What differences do you feel?

Hope it be here soon for my mutation as well!

 

[jamest]

My biggest problem with international flights is the length. My lungs dry out quickly, leading to inflammation, fever, etc.

So I wear a surgical mask for the duration of the flight - that traps exhaled moisture from my lungs in the mask so I can reinhale it, which helps keep my lungs from drying out. And I drink a ton of water.