Wednesday, July 1, 2015

Insurance #Facepalm

Let me start by saying I am exceedingly grateful for insurance coverage.  Whatever your politics, as someone whose life has been largely dictated by how and where I will be able to get health care coverage, I can tell you that the affordable care act is one of the biggest blessings ever.  How sustainable it is is yet to be seen, but in the meantime - thank you.


The amount of time spent on the phone trying to work out medical care kinks that get tangled up between the doctor's office, pharmacies, and the insurance companies, can seriously feel like a part-time job sometime.  Like, as in hours and hours spent on the phone some weeks.  Yes, if you're wondering, that's what I'm doing this very moment.  It was also was I was doing 30 minutes ago.  And 30 minutes before that.

For all you CF patients out there fighting this fight - stay strong my sisters and brothers!  Remember how awesome it is to have coverage at all, and that these frustrating hours on the phone with people who may or may not know the answers to your questions are well worth your time for getting the medicines and coverage you need!

That is all.

Wednesday, June 24, 2015

Checklist for International Travel with Cystic Fibrosis

I love traveling, especially overseas.  Experiencing other cultures is one of the things I enjoy most in this life.  Traveling with CF, however, can pose some complications and require a good deal of extra planning.  It hasn't slowed me down before, though, and with my upcoming trip to London and Paris, I'm looking forward to incorporating some new travel hacks!

When packing for a trip, I typically do a run-down of my day, thinking of every single treatment and medicine that I will do during this hypothetical "normal" day.  As I think of it, I write it down (or just grab the stuff, depending on how rushed I am!  And let's be honest, that happens a lot!).  Then I calculate how many days I'll be gone, and multiply.  Then, I add in a few extra days' worth of each med, just in case.

So, without further ado, here is my (personal) international travel checklist:

  • Levalbuterol:  
    • I always bring a few extra days' worth of medicine with me when I travel, just in case I get stuck somewhere.  I aim to do 3 albuterol treatments a day (though I've recently started replacing some of the mid-day treatments with a regular xopenex inhaler) - since I'll be gone for 14 days, I know I need at least 14 x 3 = 42.  Just to be safe, though, I'm going to pack two full boxes, which will give me 48 ampules.  
    • Most of these will go in my main suitcase, but a few ampules will go in my carry on in my "liquids" bag, along with my battery-powered nebulizer.  That way, in case my luggage gets lost, I have a few days' worth of albuterol to get me by.  Additionally, the boxes in my checked baggage have my name and prescription stickers on them, so there shouldn't be any question as to whether or not all those meds are legit.
  • Hypersal:  
    • Same system here.  I do it twice a day, so I'll be bringing at least 32 with me; and again, while most go in my checked baggage, some will stay with me in my carry-on, just in case.
  • Pulmozyme (and TOBI):  
    • These are tricky to travel with because they need to be kept cool.  Personally, I don't worry too much about traveling with them unrefrigerated for a few hours.  At some point in my life, I remember hearing that these medicines are fine so long as they don't go longer than 24 hours without refrigeration (maybe just don't leave it in your car all day during the summer or anything, though).  I've traveled by this rule, and have never had any problems with the pulmozyme or TOBI.  
    • I usually pack most of it in my checked baggage, slip a few extras in my liquids bag (always still in the foil pouch, though!), then make sure I refrigerate them as soon as I get to the hotel wherever I'm going.  
      • CF LIFE HACK:  if you're in a hotel room with meds that need to be kept cold but don't have a refrigerator, try grabbing the ice bucket, filling it up about halfway, then just keeping the meds (in a ziplock bag!) inside the ice bucket.  The ice melts fast enough that you don't have to worry about the medicine freezing, but the bucket is insulated enough that it makes a nice, cool place to keep the meds.  I usually just replace the ice once a day and let the ampules sit in there until I need them.
  • Flovent and Dulera (steroid inhalers): 
    • I do two puffs of each, daily.  
    • I always bring two of each inhaler with me, in case one gets lost or breaks for some reason.  Also, this allows me to separate them - one in my checked baggage, and one in my carry-on.
  • Xopenex Inhaler:
    • This is helpful if I'm not able to do my mid-day albuterol treatment.
    • One goes in my carry-on, and one goes in my checked-baggage.
  • Colistin and Syringes:  
    • Last summer was my first time traveling with inhaled colistin.  It made me simultaneously way nervous and way excited - nervous, because it meant I had to travel with syringes, but excited because it was one less medicine I had to worry about keeping "cold." (as opposed to Tobi or Cayston).  For those of you who don't use colistin, it's not as simple to use as the other antibiotics.  Instead of a pre-made ampule, you have a vial of sterile water and a vial of colistin powder.  Using a syringe, you extract sterile water from the vile, insert the water into the colistin vial, mix it up, extract the mixed compound with the same syringe, then insert the mixture into your nebulizer for a treatment.  
    • For this medicine, I always just pack it in my checked baggage because I don't want to have to deal with trying to get through security with syringes (especially at some of the overseas airports like Heathrow where they're seriously nazis about this kind of stuff).  I know there are ways to do it, though, probably involving a doctor's note.  If you really want to keep syringes with you on the plane, contact the airline and/or airports you will be traveling through and ask what their procedures are.  Obviously people with diabetes travel with this equipment all the time, so it can definitely be done.  I just prefer to keep everything in its box/bag that has my name and prescription information on it, and keep it in my checked baggage.  I haven't had a problem yet. 
      • NOTE:  Before putting syringes in your checked baggage, though, consider where you are flying to.  I've heard stories of people flying to/from a "party" town or 3rd world country whose syringes mysteriously disappeared from their suitcase somewhere between check-in and baggage claim.
      • CF LIFE HACK:  If you have the space and conviction to travel with a sharps container, by all means do so!  However, I don't love the idea of wasting precious space and baggage weight on one.  Since I only use the syringes to mix medicine and not to administer it, neither the needle nor the tube part of the syringe (like my technical language?) ever comes into contact with any blood or bodily fluids.  Therefore, my system is to just recap the syringe after I'm done with it (BE CAREFUL!!).  I then remove the capped needle from the tube, throw the tube away, and put the capped needle in a ziplock bag.  This is my "needle trash bag" for the trip - when I fly home, I put the ziplock bag in the bag with the unused syringes that has my prescription information on the cover, and I then dispose of the capped needles in my sharps container when I get home.  The needles are capped, and double-bagged, so they won't accidentally poke someone if someone at the airport needs to paw through my luggage for some reason.  Another option would be to keep the capped needles in a water bottle until you get home to your sharps container.  
  • Enzymes:  
    • Again, always always ALWAYS pack more than you need!!
    • I pack one or two bottles in my checked-baggage, then keep a large baggie full with me in my purse/carry-on.
  • Vitamins/Daily Meds (Singular, Claritin, Zithromax, etc.):  
    • I have a weekly vitamin dispenser, so I fill up a week's worth, put another week's worth in a ziplock, then refill the dispenser as needed.
    • These usually just get packed in my checked-baggage.
  • Sinus Rinse Packets and Bottle:  
    • Twice a day, plus extras!
    • Most of the packets go in checked baggage, but I bring the bottle and one or two packets with me in my carry-on to do mid-flight because my nose and sinuses get SO DRY after a few hours.
      • NOTE:  Be very careful using it in the plane lavatory, though.  Try not to let it touch ANYTHING - goodness knows what kind of germs are on those surface areas (ick!  I cringe just thinking about it).  I try not to ever lay the spray bottle on the counter, even on top of a paper towel.  If you must, though, bring your own cheap wash cloth from home to use as a barrier to the counter (and then throw it away!).  Bringing some sanitizing wipes with you to do a quick wipe down first isn't a bad idea, either.
  • Flonase:  
    • Same story, though since this isn't a completely vital medicine and I need to save packing weight anywhere I can, I only take one full bottle, in my checked baggage.
  • Alkalol:  
    • Again, not vital, so probably only one full bottle, in my checked baggage.  If weight becomes an issue, though, this will be one of the first things to go.
  • Emergen-C:
    • As a general rule, this stuff is not going to give you any extra advantage to not getting sick on your trip unless you vitamin c level was already low and needed a boost in order to give you a fully-functioning immune system.  But I figure it certainly can't hurt anything, and makes me feel better knowing for sure I've knocked out my required vitamin C intake for the day and am doing all I can to make sure my immune system stays strong on the plane and during my trip.  Plus it has a lot of B vitamins which can give you a little extra energy, so that's always a plus!
    • I back 2-3 packets in my carry-on, and a boxful in my checked baggage,
  • Back-Up Oral Antibiotics and Prednisone:  
    • Anytime I travel out of the country, I always ask my doctor to write me a prescription for some back-up oral antibiotics and prednisone that I can take with me on my trip just in case I get sick while I'm abroad.  They're super light and easy to carry, and really put my mind at ease.
    • If I'm currently on the antibiotics or prednisone, these travel with me in my carry-on.  If they're just back-up, they go in the checked baggage.

  • Nebulizers
    • I try hard to stay in hotels (or, even better, apartments!) where I'll have access to a microwave.  This allows me to bring only about six PARI nebs, plus a steam bag, and I'm set for the whole trip.  Unfortunately, if it looks like no microwave will be available, it means I have to take enough clean nebs to get me through the whole trip, which takes up lots of room in my suitcase.
    • One nebulizer goes in my carry-on (usually inside my PARI-Trek bag), and the rest go in checked baggage.
  • Portable Compressor:  
    • For international travel, I travel with my PARI-Trek - a light, portable, battery-powered compressor.  Electrical systems overseas are different in two ways: first, the voltage of the electric current is different from ours in the U.S., and second, the shape of the plug is different.  This means most of our regular compressor machines won't work overseas - it's been my experience that even if you find both a currency converter and a plug adapter, the machines don't operate right (a simple albuterol treatment has taken me almost 45 minutes before!).  The PARI-Trek is great because it has a rechargeable battery and a DC adapter plug you can use to both charge the battery and plug directly into the compressor to run it on direct current.  The DC adapter plug works with both alternating current (what we have in the US) and dual current voltage (what you usually find overseas, particularly in Europe), and only requires a plug adapter.  The PARI-Treks are not super expensive, and you can order them online without a prescription.  
    • I travel with two compressors, one battery, and my chargers (wall and car).  Having two compressors is important for me because I have so many treatments to do, and the little compressors just get so hot and tired!  Every morning and evening I do 3-4 treatments, and each compressor starts to get pretty hot after two treatments.  Having two compressors means I can switch between the two and allow them to cool down.
    • One compressor, the battery, and the chargers travel with me in my carry-on bag.  The other compressor gets packed in my checked baggage with my other medicines.
      • NOTE: It's good practice to voluntarily remove the PARI-Trek bag from your larger carry-on and place it in its own container as you go through security, just like you would a laptop.  You don't have to take the individual pieces out, though - just separate the bag from the rest of the carry-on.
  • AffloVest: 
    • The AffloVest has been a huge game-changer for me when it comes to international travel.  I changed insurance companies at the start of the year, and, to my delighted surprise, the new company approved my request for an AffloVest.  The AffloVest, like the Pari Trek, is a battery-operated vest, and the battery is charged using a DC adapter plug.  Prior to getting my AffloVest, the ability to receive proper CPT was my biggest hang-up with traveling abroad.  I don't find the flutter and similar devices very effective, and I couldn't bring my normal Hill-Rom vest with me (even if I was willing to lug that 25 lb machine around the world with me, it wouldn't work with most overseas electrical currents, plus the grounder plug wouldn't fit into most plug adaptors).  Up until recently, I just depended on my lungs getting cleared by all the extra "exercise" I would be getting from walking around so much.  It wasn't a great system, but it was all I had.  My lungs and I were always a little relieved to get home and get back to my "normal" treatment routines.  
    • Now, with the AffloVest and the Pari Trek, I literally change almost NOTHING about my treatment regimen when I travel abroad, which still kind of blows my mind a little bit.  It's absolutely amazing, actually.  And aside from being battery powered, the AffloVest only weighs about 10 lbs, so it is easy(-er) to pack and carry with me!  
    • I pack the vest part and the charger in my checked baggage, and keep the lithium battery in my PARI Trek case in my carry-on (I've been told by the AffloVest reps that this is best, I think because it protects the battery).  It still takes up a good deal of precious space in my suitcase, but the freedom this vest gives me to travel is worth it 50x over! 
  • Doctor's Note:  
    • I'm a little paranoid that carrying SO MUCH medicine in my checked baggage might look a little sketchy to anyone who looks inside - additionally, I worry that people might have a good reason to look inside my suitcase due to the unusual presence of a large vest that, under an x-ray machine, is clearly laden with wires and mechanical parts.  
    • Therefore, I carry a doctor's note in my checked-luggage, describing my need for all the medication and also describing what the AffloVest is used for.  I have it in an open, labeled envelope, that is then lain atop the vest and medicine bags.
      • NOTE:  You can also get a doctor's note that will allow you to bring certain medications and equipment on the plane with you if needed.  Talk to your doctor if you have concerns about this part of traveling.
 (Left:  the PARI-Trek.  One of the compressors, the battery, tubing, the two chargers, and a nebulizer go inside the blue bag, which then goes into my carry-on backpack.  The other compressor is packed in my checked baggage.) (Right:  the AffloVest, chargers, and lithium battery (top right corner).  The vest and chargers go in my checked baggage, and the lithium battery goes in my PARI-Trek bag.)

(Altogether, the medicines and vest take up about this much room in my large suitcase.  It requires cutting down on how many clothes, pairs of shoes, and toiletries I can take, but it's totally worth making sure I feel just as healthy during and after my trip as I did before I left!!)

Now, as an alternative, here is a less-detailed version of the same list, broken down by what goes where in my luggage:
  • Checked Baggage:
    • Boxes of levalbuterol with labels on boxes, if possible.
    • Hypersal ampules
    • Pulmozyme pouches (packed at the last possible minute to minimize non-refrigerated exposure time)
    • TOBI pouches (if needed, and also packed at the last possible minute to minimize non-refrigerated exposure time)
    • 1 full Flovent inhaler
    • 1 full Dulera inhaler
    • 1 full Xopenex inhaler
    • Colistin, sterile water, syringes, alcohol pads (and extra zip-lock baggie)
    • 1-2 bottles of enzymes, labeled
    • Vitamin container + baggie of refills
    • SinuCleanse packets
    • Flonase
    • Alkalol
    • Back-up Prednisone and Antibiotics
    • Emergen-c box
    • Nebulizers and steam bag
    • 1 PARI-Trek compressor
    • AffloVest and chargers
    • Doctor's Note
  • Carry-On (usually divided between purse and backpack)
    • Liquids Baggie:
      • 3-4 ampules of levalbuterol
      • 3-4 ampules of hypersal
      • 2-3 ampules of pulmozyme
      • 2-3 ampules of TOBI (if needed)
      • 1 Flovent inhaler
      • 1 Dulera inhaler
      • 1 Xopenex inhaler
    • Misc.
      • Baggie full of enzymes
      • Sinucleanse bottle + 2-3 sinus rinse packets
      • 2-3 packets of Emergen-c
      • Prednisone and oral antibiotics if currently taking
      • Doctor's Note, if applicable
    • PARI-Trek bag:
      • 1 PARI-Trek compressor with battery attached
      • Tubing
      • 1 nebulizer
      • DC wall charger
      • Car charger
      • AffloVest's Lithium battery

So, there you have it.  This has been a very detailed post, but I hope it helps you if you are trying to figure out how to make a trip overseas a possibility and as pain-free as possible!  Let me know if you have any different travel tips!!  I always love learning ways to make life a little easier with CF. :)

If you ever have a question about traveling, feel free to ask and I will gladly give you my best answer.  Bon voyage!! :)

***Full disclosure: it took me so long to actually post this that I've actually already gone on my trip and come home, haha.  I'm pleased to say everything went smoothly with traveling with my medicines, and I came home feeling just as good as when I left!  That's a huge improvement from last year's trip, which landed me in the hospital 4 days after we got home!  So, as a bonus, here is a cute kissy pic from the top of the Eiffel Tower, plus one of my husband being ridiculous in the Louvre. (seriously, I can't take him anywhere...)