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Saturday, December 13, 2008

International Travel Tips

Recently returned from Europe and I'm just updating a few tips that I've learned (gasp!) 6 years later. Happy travels!

Update 10/28/14


Well, I'm heading off for a few weeks overseas and I'm recalling all the mishaps and mistakes I've made over the years traveling abroad.

It occurred to me that, like the other CF stuff I post, I should post this stuff in hopes it will prevent the frustrations I've had while traveling. Let me know if you have any other tips you would like to add to the list to help others! :)

BTW keep checking back. As I pack for my trip (and while I'm abroad and realize what mistakes I made this time hahaha) I'll keep adding to the post.

  • Look up how to say and describe Cystic Fibrosis in the language of the place you're going. If you're going to Europe, this might not be a big deal. But as I found out when I was ill in Japan on my last trip, it was super helpful to have a blurb written in Japanese describing what in the world this disease was (CF isn't as common in Japan as it is in Europe, as I'm sure you know). How to do this? Go to wikipedia.org. type cystic fibrosis in the search bar, and then select the language you want. Yup, now the next page will be in a language you can't read. But there should be an article that you can click on that says "Name = Cystic Fibrosis." Print that article out (there should be some pictures in the article) and keep it with you while traveling. It will save you some hassle

  • Get your doc's recommendations for IV/PO antibiotic dosing should you need to be treated overseas. I'm not on IV's that often so I can't always recall what dosing I typically get - and typically CFer's get a much higher antibiotic dose than the everyday population. While I was in Japan I have a rough time getting Cipro 750mg 3x a day... they thought I was nuts. So I had an alternative Levaquin dose that my doc said would work that the Japanese would give me. Making sure you get the right dose will make sure you get better sooner!

  • Make sure your compressor and Vest will work abroad. My PARI ProNeb Ultra does not work in Europe, nor does my Respirtech vest, and I need a huge transformer (not just a little adapter thing) to make sure those suckers work abroad. So I take my eFlow (battery powered) and my old school HilRom 104 that has a buit in transformer when I go to Europe. Before I got my eFlow I just invested in a PARI ProNeb Ultra Euro style becasue I was going often. In Japan, the compressor didn't work either - the juice wasn't enough so the PSI wasn't high enough and I wasn't getting my meds correctly (not to mention everything was taking FOREVER to neb). So again, the eFlow is an option here and additionally I bought a PARI ProNeb Ultra for Japan. Yey for 3 continents of compressors! But the Respirtech worked just fine in Japan. Oh yes and beware of that PARI Trek - the PSI is not high enough for TOBI or Pulmozyme! Better get an eFLow or continent-specific ProNeb Ultra :)

  • Buy disposable nebs. I am militant about santizing my nebs after each use (boil or soak in alcohol after each use to ensure I'm not re-breathing in bacteria that's been growing on the neb between treatments). But often times I don't have time to do all this cleaning when I travel. So I pack a billion disposable nebs when I travel. These Hudson Updraft II's are disposable (use 'em once, toss 'em) and aren't HORRIBLy expensive - and are approved to be used with Pulmozyme!!! . Well worth it to save the time from having to santize meds or risk getting sick from not cleaning properly. I literally pack 100 in a big suit case for a 3 week trip (use 4 a day for 21 days) and then I have an empty suit case to bring goodies back home! http://www.medplususa.com/list-product_info-p-Hudson_UP_DRAFT_II_OPTI_NEB_Nebulizer_with_Tee_Mouthpiece_and_7_Tubing-pid-8395.html

  • Bring a doctor's note for your Vest, compressor, meds and those 100 disposable nebs. Some places I've gone I've been fine with all my equipment, but other places I've been accused of doing all sorts of ridiculous things. But since all we're trying to do is live our lives as CFer's, get your doc to write a letter saying all this stuff is medically necessary (but NO, it's NOT oxygen and you won't be using it on the plane). This can help expedite customers / security, etc.

  • Keep all meds in original containers. Yup, it takes up more space to do this. But it's always nice to have your name on the Rx label proving that these meds are yours for your use, and you're not some criminal doing something that is a no-no. Update: I have been putting meds in individual plastic bags and taking a pic of the Rx bottle label and taping it on the plastic bag. Saves a lot of space from bottles

  • Bring extras of everything. I will never forget when a family member had to stay abroad for an extra week due to 9/11. Planes weren't allowed to fly in for quite a bit of time and as a result his trip was unexpectedly extended. What would happen if he would have been a CFer and ran out of meds overseas???? It's not fun to think of 9/11, but there are all sorts of reasons why your trip could be unexpectedly extended and I always pack extra meds just in case I need them!

  • Bring all meds/compressor/Vest as carry on. Yup, it's A LOT of stuff. And it's hard to lug around. And most likely the airline will give you hell about it. But you know what's worse? Being without your meds/compressor/Vest for a few days while the airline tries to find your lost luggage. I bought several little Samsonite 4 wheel carry on luggage things to bring on board with me - 1 for my Vest and 1 for my compressor and meds and 2-3 days worth of disposable nebs (I can't fit all 100 as carry on!!!). Don't let any airline person talk you out of this.... it must be carried on!!!! If necessary, remind the airline that they'll be responsible for your $20k Vest if it's broken by them.... better you carry it on with you

  • Bring your own yeast infection treatment. I didn't realize how widely these treatments can vary and currently on my trip right now I wish I had my tried and true Monostat! ahhhhhhhh!

  • Bring your own tampons. Of the 10+ countries I've been to in Europe and 2 in Asia, the only tampons available were OB brand. Most American women are NOT a fan of those and would like to be able to use an applicator. And pads just don't always cut it. So BYOT. Update: My recent trip to Germany revealed tampons are being sold with applicators. Not sure if that's the case for all of Europe, but thumbs up for Germany!

  • This is thanks to Nightwriter (thank you for this great idea): not all countries have isopropyl alcohol to clean your nebs. When I was in France they would only let me buy a small amount at once and it was hard to find. So bring your own (yes, takes a lot of space but use it up and you have room for souveniers to bring back with you!). Thanks again for the tip Nightwriter!

  • In 2012 I was marvelously diagnosed with CFRD so packing needles, insulin, are now a fun part of my travel adventures. Definitely call to make sure your hotel room has a refrigerator (this makes sense for domestic travel too of course). I found that the mini bar often isn't cold enough. Great for pulmozyme as well

  • Sinusitis has also become part of my nightmare since my last update, so making sure my sinuses are taken care of and not infecting my lungs is a priority. It's difficult to find a way to boil water in a hotel room to sterilize to shoot the water in your nose. Domestically I typically get an Rx for sterile water at the pharmacy at my destination and then pour in my Neil Med bottle. Neil Med luckily offers NasaMist Saline Spray pre filled sterile water sprays. Yes, you probably can't put your other meds in the spray like you might at home (steroid, antibiotic), but it's much better than nothing, right?

Thursday, December 4, 2008

Stanford visit

Disclaimer: I share with you all this information in the spirit of good health. I am not here to promote anything any doctors have recommended, nor do I intend to make any doctor upset by me posting his/her name/information/recommendations. My sole purpose for this post is to help my fellow CFer's gain an upper hand on this horrible disease.

So I decided a few months back to head to Stanford's CF Center for a consultation. As many of you who know me know, checking out other CF Centers is a fav pastime of mine. Well, not really, but I did go to Minnesota in 2006 and I visited Cincinnati this summer so this will make my 3rd excursion.

I originally didn't have much of an agenda when I made the apt to see Dr. Weill, Director of the Adult CF Center at Stanford. But I've been dealing with a decreased FEV1 the past few months which has lead to ABPA suspicion, so the consultation ended up being perfect timing.

I'll first list my initial top line impressions, then I'll go into specifics about my personal care and his subsequent recommendations.

  • Infection control was not as stringent as my clinic. Scales aren't wiped down after each patient; chairs at the nurse's station and the actual examination room aren't wiped down; blood pressure cuffs aren't changed in between patients nor are they wiped down; CF patients aren't given masks/gloves when they check in; doc, nurses, PFT tech didn't gown up when around me; I'm a MDRPA patient so all of this was VERY surprising to me and very very different from my clinic.... i thought for sure what my clinic did was CFF protocol!!!! bleh
  • The clinic is very tech savvy: they post patient education days on the web; I was encouraged by Dr. Weill to email him; the clinic was riddled with posters encouraging patients to check out their website or to research such and such thing on another website
  • The clinic is very multi-disciplinarian - ENT works extremely closely with Pulm, as does Gastro and Allergy; this is NOT the case with my CF team by any stretch of the imagination and I think that this close link improves patient outcomes.... CF is NOT simply a "mucus in the lungs" disease by any means!!!

Background Before Visit

Just so you have some context behind my visit. I haven't had fevers, increase in sputum, increased fatigue or decreased exercise tolerance yet my FEV1 is down by about 10%. I did, however, have to discontinue cromolyn sodium for 5+ months because the manufacturer disc. Thankfully the past 2 weeks I was able to get the med back but the thought is that maybe discontinuing this med that has caused massive inflammation (from the severe environmental allergies I have or maybe the aspergillis that I've culture for 5+ years).

Doc back home did an IgE aspergillis specific (1.83 was the result - high). Home doc not convinced it's ABPA because I'm not wheezing, etc.

CT Scan has showed no fungus balls, but rather slight increase in mucus plugging and slight increase in broncheactasis since last CT scan 12 months ago. I have been switched from flovent MDI to Advair to see if the long acting bronchodilator helps with inflammation. I'll be re-doing PFT's on Monday, Dec 8.

Another issue I've been having the past 12 months is night sweats. Hormones have been checked; OGTT done; not eating high carbs right before bed; TB tested; the whole 9 years. ENT and doc hypothesize it might be sinus junk but I don't really look bad enough for surgery.

Stanford Visit Findings

A few fun things that I think will be useful moving forward:

  • Regarding ABPA, Dr. Weill couldn't be sure because he didn't have the CT scan (will send to him when I get a hard copy) but he told me that he does an IgE test every clinic visit for his patients. If the # is >1000, patients get 1 week of steroids and voriconazole even if they aren't showing symptoms. Something I will be thinking about when further examining my ABPA possible issue
  • Interesting rinkle in the year long night sweat saga: Dr. Weill feels that my decrease in lung function and night sweats could be due to nocternal aspiration of gastric juice due to bad GERD. He says he has done some barium test (ph probe, mannometry, and esophagram.) and many CFer's show no other GERD symptoms but they're aspirating and it's causing inflammation/harm to the lungs. So I'll be investigating that and increasing my PPI dose from once a day to twice a day (btw i have since increased my PPI dose from 1x to 2x a day and night sweats are gone since December 2008. YEY! i will soon be looking into doing the above mentioned tests anyway, though...)

So I have a bit to talk to my doc about when I see him on Monday. But I think these two tidbits of info were helpful for me and might be for anyone out there looking for answers to night sweats or interested in aggressively treating inflammation/fungal troubles.

Let me know if you have any questions/comments/advice/etc. This was a great trip and I just may put Denver or UNC next on my list of clinics to visit in the coming years.... it's always nice to see what everyone else is up to :)