TRAVELING ?! What countries

[kittencaitlin]

Hi. I started Kalydeco last year, and although my lung function is terrible (was to start), I have experienced a sort of reprieve, that has allowed me to stave off transplant a bit longer. I am no longer as short of breath, and can tolerate travel much better. I want to do whatever I can. I know Europe is safe. My question is this...anyone ever gone to south america? I know Africa is out, Asia and any third world countries....because of disease, etc., lack of medical care...you know..everything. I use oxygen when I sleep, have my nebs, so need good accommodations, and want to be near good health care should anything go wrong.

I know S. America can be tricky -- but I wanted any of your perspective on it? Buenos Aires is where I want to go....a very modern city with #2 health care in S. America, though I don't know what that means. Have any of you traveled there? Were you healthy? What other places have you gone besides europe? I'd like to travel to certain places now, before transplant, while, even though I am sick, i don't have to deal with being immunosuppressed.

thanks!

P.S. Obviously I am going to talk to my doctor, but I wanted to hear some real stories/input. So please don't respond telling me to ask my dr. before going anywhere!

thanks again,

Caitlin

 

[SaraNoH]

Hey there, I'm glad to hear you want to travel and it's a great goal to have. While I've never personally been to Buenos Aires I've spent loads of time in Ecuador visiting family and went to Peru and Machu Picchu last Christmas. Any time I go it's been fine CF wise. You can pack a little nebulizer and some meds if you need and I feel totally safe down there. It's not as "3rd world" as some would think. Shoot sometimes I think it's nicer than the states... I've had family go to Buenos Aires and from what I hear it's basically the US, but in Spanish. Very nice, clean, modern etc. I know in Ecuador the healthcare system has been improving steadily over the years so I'll assume there's been a trend in the other countries. I think Buenos Aires is a great place to start though!

The only thing to "worry" about would be the long flights, what with breathing in stale plane-air for hours on end. I don't know if you have problems with that sort of thing but that's just an issue that I can think of.

Have fun on your trip

 

[Melissa75]

Buenos Aires is beautiful and very fun. My aunts, who lived and died of old age there, seemed to have great health care, though some neighborhoods have better hospitals than others, just like in US cities. More buses and cars use diesel, and more bathroom cleaners seem to be heavily scented, so if you have super twitchy airways, this is something to be aware of. I was there in 2000 and in 2011, and felt the city air was cleaner in 2011.

Right now the purchase of dollars is illegal. The economy is in turmoil. The official exchange rate is 4.5 pesos for 1 dollar. The "blue" market --the only way to trade pesos for dollars--rate is 6.3 pesos for 1 dollar. You need to talk to a travel agent about what this means for a tourist. When I was there less than 2 yrs ago, you could pay for anything in dollars or pesos, and often got a discount for paying in dollars.
I suspect it is the same now...just make sure you are paying the REAL 6.3 rate and not the published 4.5 rate.

The city lives on a different schedule, which guide books will describe in more detail. Suffice to say, don't show up at a restaurant for dinner before 8-9 pm. 10 or 11 pm is normal. Clubs stay open very late.

Leather products are high quality and inexpensive compared to the US. Beef is great. Tango...so beautiful. If you can, take a short plane ride to Bariloche, a resort in the Andes.

Leave showy jewelry at home, as you should do in ANY traveling, and take official taxis to and from the airport. Do not check bags with expensive jewelry or technology. Anything precious should be carry-on. Again this applies to all travel.

Getting a converter that works for your electric equipment is a PAIN. Stores here will convince you they have what you need. Bull**** at least in my experience. Your hotel will either be nice enough to have what you need OR you will get directions to a hardware store and buy the converter when you get there.

Skype is the way to go for communicating. Most hotels and cafes have wi-fi. Read reviews about your hotel's wifi. In the last one I stayed at, which was pretty, clean and cheap, you had to mash your body up against one of the walls for any internet service. You may drink a lot of coffee and eat a lot of croissants (media lunas) in order to be online.

I hope you have a great trip and feel good while you are traveling!!

 

[sue3582]

I actually went to Africa this summer and have never felt so healthy. I brought a battery operated nebulizer and I never had a problem with power or anything. It involves a lot of work, but it was a once in a lifetime experience. Obviously many other places are easier to visit but if you really wanted to go to Africa I wouldn't count it out.

 

[kittencaitlin]

Thank you everyone who responded so far! Sue - where in Africa did you go? So curious. Yes, I have heard and what I know about BA is that its the Paris of south america, so to speak. My health definitely isn't great. I need o2 to sleep (i have a tiny portable concentrator ... expensive but worth it for me). And my neb. And my meds. Mostly its just worry of being so far from home. And the long flight is an issue. Even with o2, i still feel horrible on and after flights. I did Paris for 2 weeks in june, by myself. It was wonderful. I love Europe but want to branch out more, before I delve into the post-tx world of a "new set of worries" so to speak. Not that I don't hope to travel after that! Of course I do, but it will just be different (so many more food restrictions!).

Anyway, I am curious like I said sue, where you were in Africa. And anyone else with more info is much appreciated. Thank you melissa and sara for the helpful info!

 

[nocode]

Hi, sorry I can't respond to you question directly because I've never been to South America. I've traveled a lot though and have lived in 4 countries and I'm so glad I have allowed myself to overcome health related fears and just go for it. It's truly allowed me to have great experiences.

I do have a question for you. You say that you'd like to travel now before you get a transplant and are immunosuppressed. Are we advised against traveling after a transplant? To what extent?

 

[SaraNoH]

I need o2 to sleep (i have a tiny portable concentrator ... expensive but worth it for me).

Hey just wondering what kind of concentrator is it? My dad owns a local medical supply company and he was telling me that they make portable ones that tiny tiny tiny nowadays that you can easily take on airplanes. I think it's great! Plus small medical equipment is cool

 

[65rosessamurai]

If you like tropical, Quam is a place that is half-foreign, yet half-American. And I would expect less issues with health because of the salty air and that its still a US territory. If you travel anywhere, find out first if your credit card has some sort of healt insurance for travelling tagged on it.
My credit cards do, so if I'm out of country (Japan in this case) the credit card would still help.
Japan is not a third-world and is generally safe, so if you considered Asia, it would be a recommended stop. They have a very good health program, but whatever country you visit, be sure to get accurate information from the US Embassy for travelling and their home page may have additional information for health-related issues.

However, I also found Hawaii to be very enjoyable, so just travelling around the US would even be an adventure (and omit the health issues, perhaps).

Have fun when travelling...

 

[Caro46]

Africa is a big place, so don't rule out the whole continent! Come to South Africa - healthcare is definitely not "3rd world" (1st heart transplant in the world took place in Cape Town, where we live, for example...). In fact, come to Cape Town... fresh sea air, mountains... it's really very, very beautiful, and my husband (who is Dutch) and I have decided that it's the best place to bring up our child. The city is conducive to 'activity', so on a fitness and lifestyle level, it's great. We often take Anna for walks on the beaches for 'natural nebulisation'. South Africa is beauuutiful, there's so much to see and do, and the fundamentals like electricity and running water are options wherever you choose to go. So... there you have it. I should get me a job in Travel & Tourism...

 

[sue3582]

We went to Kenya and Tanzania. Like I said, everyone was very accommodating. I even forgot my pulmozyme at one of the camps and a driver drove an hour to give it to me. I did not bring my vest (used an accapella instead) but I could have no problem. Actually, because of how bumpy the roads are it was almost like having a 5 hour vest at times!

Long flights are very hard on me also. We actually flew in a day early because of it, so I was able to rest all day.

 

[kittencaitlin]

Thanks again for the replies! Yes, I know Africa has some great health care also. I have definitely thought of South Africa. My issues anywhere are health care availability, elevation (i notice a difference at even 1,000 feet), and general cleanliness/prevalence of disease. My fev1 is only 28. I have issues walking long days and walking up lots of stairs, so although I dream of rugged vacations and mountain climbing and trekking, its not in the cards for me at this stage. Still, there are places I'd love to experience in my own way -- like s. america or africa -- if I can figure out how to make it happen.

Sara- it is a lifechoice POC that I have. I used to have an inogen but i just recently bought this new one. Its small, only 7 pounds. The only drawback to POC's is they don't deliver continuous flow O2 -- only pulsed. It takes some getting used to, at least for me, and I don't like it as much, but it does the job for traveling. Amazing that even though we have some great medical equipment, the technology is still not there to make something REALLY efficient and small and with continuous flow. Yet I hold the world in the palm of my iPhone. hah

nocode - no! traveling is not discouraged after tx. in fact, i do look forward to doing certain things afterwards -- like climbing mountains! ski trips! all kinds of things. i know a girl who went to China, twice since her tx. but i have also talked to her and others extensively about risks during travel after tx and basically it comes down to this, in a nutshell. tx is like trading one set of problems for another, and for that you get the gift of new lungs and all that brings, but your disease management changes. You cant eat lots of food, the risk of getting sick is just different, because of the suppressed immune system. A woman I know forced herself to stay away from unpasteurized cheeses (as are lots of cheeses in europe) while in Italy....but on the last day she ate pizza because she figured it maybe would be ok, cooked, etc. She got horribly sick for two days. This is a minimal example of such a thing but imagine for example being in a place where the level of food safety control is much different. There are so many things in our environment even here, right now, that won't make us sick but will make an immunosuppressed person sick. So its just a different situation -- and also from what I gather, you feel sick in different ways after tx.

There is still so much of europe I would like to see also. What is everyone's favorite place in the world? just curious. love to talk about travel!