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:


Meds:

• 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.

Equipment:

• 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...)

One Pan Dishes - yes, please!

I've tried to write up some blog posts about my usual topics (health and law school), but I honestly never get very far because my brain gets bored and tired trying to be creative and informative at the same time.  Soooo, I'll just wrap those two topics up for now by saying:

1.  I came down with a cold at the end of October that I knew was bad news bears from the start.  It ended with me feeling bad enough a week and a half later that I called my doc and went to the hospital where they discovered I was so dehydrated that my heart rate had sky rocketed, my O2 sats had dropped, and I had fever for the first time since I-don't-know-when.  They pumped me full of saline, then started some IV antibiotics, and everything had equalized within 12 hours or so, thankfully.  I only had to stay in the hospital 4 days this time, which is new to me - it's usually at least 10-14 days, which is why I typically resist caving in and agreeing to be admitted.  So it was nice to really only miss out on a few days of life and school. Also thankfully, this unexpected dose of antibiotics and prednisone has bumped my numbers back up to the highest they've been all year, so yay for that!

2.  Law school.  Almost.  Done.  Thank. The Lord.  I have 2.5 weeks of class left, then finals, then graduation!!  Oh yeah, then the bar.  Boooo.  That will be a super trying time for my health, sanity, and probably every single relationship in my life.  I am asking for lots of prayers for good health and diligence!  Luckily I have some pretty awesome cheerleaders in my corner, including a husband who has been through the stress of studying for and taking the bar and will loving keep my butt in gear while comforting me when it all feels too much. :)

Ok.  Now for the real post.  I've been cooking a lot recently, and wanted to share some of the better recipes on here (it seems like an easy post that won't require too much writing creativity!).

"One-Pot" meals have become one of my new obsessions.  If I can keep everything contained to a cutting board and a single pot to clean, I am a happy camper and a much more enthusiastic cook!

Today I made this "One Pan Mexican Quinoa" for lunch.  It. Was. Awesome.  It literally took me less than 10 minutes to get everything in the pot, then I was able to hang out with hubby and enjoy a lazy morning on the couch until it was ready!  Seriously worth a try if you're looking for something new, fast, healthy AND tasty.

A few days ago, our sweet, elderly, Mexican neighbors gave us a handful of homegrown peppers from their garden and WHEW are they spicy!  The husband laughing told my hubby that his stomach couldn't handle them anymore, but that his wife still ate them.  We gave the peppers a nibble and they kinda knocked our socks off.  I've been getting gradually more adventurous for using them in my cooking this week, and today I decided to use them in the Mexican Quinoa.  I used them in place of the jalenpenos and didn't bother seeding or deveining them.  It definitely kicked the spice level of this dish way up there, but the result is sooooooo delicious!

Cooking tip:  Where I live in the south, this is common knowledge, but in case there are readers from regions that don't use spicy peppers in half their dishes like we do, always seed and devein your peppers if you want the pepper flavor without the spice.  By adjusting how much of the vein and the seeds you use in your dish, you can control how spicy it will be.  Another option is to just find a pepper that is labeled "mild", such as a mild hatch chili or poblano pepper.  Personally, I like starting with the spice and just toning it down until I get the ideal level of spiciness for the dish.

This dish resembles a quinoa chili with some extra mexican flavors.  In the end, I added some chopped red bell pepper and green onions to add some cold and snappy textures to the dish, as well as some feta cheese crumbles.  This makes it a more well-rounded meal and the cheese adds a little extra fat to make sure all the vitamins from the veggies get absorbed.

This isn't a very high-fat dish, so if you're looking to put on some weight, you might try adding a few extras.  The only real fat sources is the tablespoon of olive oil and the avocado.  I would suggest adding cheese for some extra calories.  I also think this would be delicious mixed with some kind of meat - perhaps some ground beef or chicken sautéed in some additional olive oil.

NOTE:  it took my quinoa closer to 40 minutes to cook down.  If yours doesn't look done at 20 minutes, just keep an eye on it every 8-10 minutes until the germ rings start to appear and the soupiness has cooked down.

Let me know if you try it and what you think!

One-Pan Mexican Quinoa

Alkalol - my nose's new BFF

OBLIGATORY DISCLAIMER:  I'm not a doctor.  I'm just talking about what has worked for me in the blog that follows.  Talking with your own doctor before trying something new is always the best way to go!

So I have a few new health discoveries I thought I'd share with the world.

But first, some non-health-slash-"normal"-people-news: ... I've officially started my last semester of school EVER!!  SWEET!!  I wrapped up my internship at Legal Aid at the beginning of August.  It was a really hard decision to leave and not stay through this last semester, but I had a legal ethics exam to study for at the beginning of the month (which I recently found out I passed - woohoo!  Some group of unknown people somewhere consider me ethical enough to practice law!) and I have 15 hours (6 classes) this semester.  As much as I loved working there, I wanted to make sure my body wasn't pushed too hard for the rest of the year after what I went through back at the start of the summer with my health.

So now that we're back on the health topic - I've made a few semi-important health discoveries over the past month I wanted to share with the world.

Today's topic is....Alkalol! (when you first mention this to someone else, be prepared for them to assume you are drunkenly pronouncing "Alcohol") It's an over-the-counter nasal rinse that includes a blend of menthol and natural oils that acts as a mucus solvent, among other things.  I've started adding about a tablespoon to my daily sinus rinses, and I'm pleased to say I can tell a difference!  

I was getting frustrated because, despite doing nasal rinses twice a day almost religiously, and despite just having had another sinus surgery back in June, I could feel a huge chunk of hard gunk building in my left sinus.  It got so distracting that I reached a point where I would *fantasize* (I'm using that term loosely here) about going to the ENT and having him reach up my nose with those long tweezer-things, and pull out that hard glob, no matter how much it hurt, because the relief would be worth it. (sorry, I know that's disgusting - but such is the world of CF!)   So I started googling, desperate to find some other kind of way to break up gunk in your nose.  I found the blog of one CFer who said she'd had horrible sinus problems, and her new ENT had given her a new combination therapy to try:  Alkalol mixed in with her normal sinus rinse, as well as a few drops of baby shampoo, followed by a saline spray in each nostril that consisted of a bottle of saline that had two singular tablets dissolved in it.  She claimed it had done wonders for her.

The baby shampoo part freaked me out a little, but apparently it's a for-real thing.  (Here's a mostly-respectable-looking study done on it and published in the American Journal of Rhinology)  I did some more research, and found other CF patients who had been put on this particular combination therapy (or one very similar) and been happy with the outcomes.  So I decided to give it a try.  I headed to my local drug store, bought some Alkalol, a travel-sized baby shampoo, and a generic saline nose spray.

The first few nights, my nose felt "refreshed" right after I'd done the rinse, but I was incredibly stuffy all night long, for several nights in a row.  That's when I decided I'd tried too many new things too quickly.  I'd originally mixed 1/4 cup of Alkalol with 3/4 cups of water and my normal sinus rinse packet, with a few drops of the baby shampoo.  As one CF patient stated in regards to this mixture, it "burned with the fire of 10,000 suns," but the burning quickly gave way to the pleasant, refreshing openness only menthol can create.  I then followed it with the singulair/saline spray.  I think the mixture was just too much, too quickly, though, because my nasal passage would then be inflamed and stuffy all night long.   I cut out the baby shampoo completely, as well as the saline spray, and scaled back to around a tablespoon of Alkalol mixed in with the sinus rinse.

AND IT'S WORKING!  Not only is my nose no longer stuffy all night, that big chunk of gunk has started to break up and clear its way out!  It took about a week of using the Alkalol mixture before I started to notice a difference, but sure enough that hard piece of gunk that had been bothering me for weeks started breaking up and clearing out.  It feels so much better!  Whatever combination of ingredients in the Alkalol that acts as a mucus solvent is just what I needed to add to my sinus clearing routine.

I think I'm going to eventually try to work my way up to the 1/4 cup Alkalol to 3/4 cup water ratio, and possibly add back in the baby shampoo, but for now I'm happy with my diluted product.

The only negative about Alkalol I've found is that it contains "all natural ingredients".... and caramel color.  I think that is super random to include in a nasal wash.  However, I personally am not particularly freaked out by the use of caramel color, especially in whatever tiny amount is added to give this rinse a super-light-brown color, but if that's the kind of thing that bothers you, just be aware it's in there.

That's all for now.  I'll be back soon with one of my other new "discoveries!"

Here's a link to the Alkalol website.

Wanderluster

I'm a wanderluster.  Always have been, always will be.  I love everything about traveling.

I love packing for a trip, and the anticipation that goes with thinking about where you'll be soon and what you might need there.

I love driving around the airport (this part blows my husband's mind - I know a lot of people get stressed when driving around an airport, but I enjoy the excitement buzzing all around me - plus it's fun to think about all the exciting places those planes could take me!).

I love being in the airport - checking my bags, successfully making it through security with all my medicines and nebulizer, buying something to munch on, and then anxiously waiting at the gate.

I love being on an airplane (though, admittedly, this part can get old around hour 5 or 6) - there's this moment when I sit down in my seat and buckle my seatbelt that I smile and think "Yes.  I am in my element."

I love retrieving my bags from the carousel, then stepping outside in a new location for the first time and breathing in its fresh air.

I love staying somewhere that's not "home," be it a hotel, rented apartment, friend's house, etc.  I love having a new space to claim and make "mine" for a brief amount of time.

I love learning the transportation routes of new places, be it navigating a city subway or driving through curvy mountain roads.

I love getting to know new places - everywhere you go, even if its within your own country or even state, there is a unique vibe and culture that is different from your own hometown.  My favorite trip is one that's a perfect blend of "seeing the sites" and finding some local culture to blend with.  I view seeing the historical sites as getting to know the city as it once was, and hanging out with the locals in their vie quotidienne as getting to know the city as it is now - both are equally awesome and important!

If any or all of the above resonates with you, my guess is that you're probably a wanderluster, too.  Welcome, friend!  Let's talk a little more, then, about one of my (our?) favorite conversation topics, then:  traveling!

I've had a good deal of opportunities to travel in my life, for which I am exceedingly grateful.  Early on, my parents didn't hesitate to send me to visit relatives during the summer by myself, which I think really contributed to my comfort with traveling.  In fact, my first flight by myself to go visit family happened just a few weeks after I turned 6!  I remember being chatty with the flight attendants and telling them about my Barbies, and laughing when we landed because the plane bumped up and down - obviously I wasn't too disturbed about traveling alone.  My dad also traveled a great deal with his work when I was growing up, so my mom and I often accompanied him (which worked out for us!  It meant free hotel rooms and some free meals, which can be a bulk of the expense of a trip!).  We traveled both domestically and abroad in Europe, and somewhere in that process I fell in love with travel.  I couldn't get enough of it, and still can't.

My most recent adventures took me and my husband on a trip to Europe with my parents.  We stayed in an apartment in Rome for 8 days, and a hotel in London for 3 days.  This was my first time to Italy, and I was super excited to go!  I'd been to London several times before, but my husband had never been, so I had a list of places to show him during our short time there.

Rome was amazing!  I took a Roman History course way back in the day during my freshman year of college, and a Latin course even further back in the day during my freshman year of high school.  Needless to say, my history was a lllliiiiiitttle rusty, but taking those courses was enough to instill in me a true interest in ancient Rome, so I LOVED seeing all the ancient ruins, just scattered randomly throughout the city.  Then you have the entire history of the Catholic church layered on top of the ancient Roman history, plus the Italian renaissance - the place is positively seething with history, and secrets, and absolutely amazing architecture...and also pasta and pizza!  Love, love, LOVE it!

Colosseum:

Ancient Roman Forum:

More of the Forum:

State Monument of Sorts:

PIZZA!!  It was everywhere!!  Seriously, it was almost cliche - we were hard-pressed to find any restaurants serving food other than pizza, pasta, or sandwiches in the entire city...

Vatican City and St. Peter's:

Trevi Fountain:

Pantheon:

Ruins at Pompeii - seriously amazing!  That floor is 2,000 years old!!

Pretty Ceilings in the Vatican

View of Rome from an elevated park near the Borghese Galleries:

Political Rally in Piazza del Popolo:

Aaaaaand, then we got to London, which apparently was an epic fail on my part in terms of taking pictures.  Boo!  But the city was amazing, as always.  Unfortunately, on the flight from Rome to London I must have picked up some kind of germs, because our few days in England marked the start of my really not feeling well (which led to my subsequent hospital admission upon our arrival back home a few days later).  This really stunk because I had so many places I wanted to go and show my husband.....but at least we got to check out a few highlights. (And I'm hoping it just whet his appetite to go back sometime soon ;) ).

Our 1 year wedding anniversary actually happened while we were in London, so I was in charge of planning something fun for us to do to celebrate.  The highlight was our "champagne tour" in the London Eye - we did a round in the huge ferris wheel by the Thames and were given glasses of champagne to enjoy during our ride.  It was really cool!

View from our London Eye capsule

The next day the family rented a car and my dad drove us around the lovely English countryside.  We drove from London to Oxford, attempted to see Highclere Castle (aka Downton Abbey - but the grounds closed literally 10 minutes before we got there :( ), then out to Stonehenge.  (P.S.  Between being stationed in England for a few years during his military days and his lifetime work travels, my dad handles british cars and driving on the "wrong" side of the road like a champ - I'm always so impressed how easy it is for him!)  It was cold and rainy that day (surprise, surprise), but I just accepted it as feeling super "Britishy" and loved it all the same. :)

Stonehenge (from the car window) 

Today

I mowed my lawn today.  With a push reel mower.

This makes me happy.  This makes me proud.

Because this was my first try since my initial failed attempt at lawn mowing when I was 15.  Because we own a house.  And because I'm finally feeling well enough to accomplish such things.

That is all.

Big Hospital No-No

So a lot of really awesome things have happened since my last blog update - liiiiike, moving into our first house, surviving another round of finals (and coming out with my best semester GPA yet - woohoo!  Too bad it takes the full three years of law school to really get your exam routine down...oh well!), and an amazing trip with my hubby and parents to Rome and London.  I'll have a new post soon talking about my trip.  But for now I'm sad to say I'm back in the hospital, and have a short blog to post about that.  (Boooo)

Based on other people's hospital stories, mixed with and my own experiences, I've come to a conclusion:  It's tough for people with a chronic illness to be in the hospital because, oftentimes, we know more about our care and what we need than our nurses and other hospital care-givers know.  This is simply because we're used to dealing with these issues on our own, every day, and we therefore know when something isn't being done correctly.  (Contrast this with a person who's been admitted for an accident or acute illness - they probably have no idea what kind of care they should be receiving, because this is all new to them anyway!)  This puts us in an awkward position of having to find a balance between making sure things get done right and not being a Miss Bossypants patient.  I am not someone who typically does well with confrontation (kind of ironic since I'm studying to be a lawyer, huh?), but after a few days/weeks in the hospital, I sometimes become irritable enough that I have the courage to speak up when something isn't being done "correctly."

Which leads me to today's story and the reason for this post.  So I'm in the hospital, and for the most part everyone has been great.  The guy who inserted my PICC was a little rough (and he put in the wrong kind, grrrr), and occasionally the nurses get on my nerves by waiting too long to start a treatment/IV, being WAAAAY too cheerful or talkative when they come into my room and wake me up at 7am, etc., but for the most part things have been fine.  Strangely, though, it's not the people constantly injecting things into my veins that have me worried - it's the people handling my breathing treatments.  Most of the RTs here have been wonderful, but every once in a while they do something that makes me cringe or want to yell "no nO No NO NOO!!"

(REAL STORY starts here --> ) Case-in-point:  today, a friendly lady was assigned as my RT.  Things were fine until I sat there and watched her take my nebulizer into the bathroom and rinse it out with tap water from the sink.  In my bathroom.  In the HOSPITAL.  I couldn't believe I'd just seen that happen, and was too much of a wuss to say anything right then.  After she'd left, I tossed the nebulizer in the trash, and asked my nurse to let the RT know I'd be needing another nebulizer for my next treatment.

So she came for my next treatment and brought the new nebulizer, as requested.  She asked if I'd thrown the other nebulizer away, and I said "yes," and then explained to her that using tap water from the bathroom sink to rinse nebulizers was dangerous for CF patients (actually for all patients, but I narrowed it down in this instance) because there could be bacteria in the water and on the faucet that would be REALLLY harmful to get into our lungs.  She responded by saying the nurse had told her it had fallen on the floor - was that not true?  She seemed hung up on the fact that what the nurse had said was not true and not really bothered by what I had said about the water.

All the same, at the end of the treatment, she grabbed the bottle of sterilized water they're supposed to use for rinsing and walked into the bathroom to rinse the neb.  Most RTs just pour a little into the neb, slosh it around, and pour it into the trash bag that's in the middle of the room - neither of these are awesome options, but I definitely feel a lot more comfortable doing it over the trashcan full of nothing but plastic gloves and gowns than doing it in the bathroom!  However, I was prepared to let this one go.  But then...

She took apart the neb, placed both pieces IN the sink, then poured the sterilized water over them while they were in the sink!!  AGH!!!  It was a total #facepalm moment.  I get freaked out if I drop a neb piece into my sink while rinsing it at home, even knowing I've wiped down the sink with Clorox wipes beforehand and I'm about to sterilize the neb anyway.  Can you imagine what all could be growing around the sink in a tiny bathroom in the hospital??  Aside from the fact that it's 12 inches from the toilet, that's the place where people have been washing their hands after using the bathroom, where I've been doing sinus rinses (and had a lot of gross plugs come out in the process), etc. - also, I've been here almost two weeks and can personally vouch that no one from housekeeping has touched that sink with a cleanser since I've been here.  ICK!!

At that point I kinda felt like no matter what I said, it just wasn't going to sink in with her that bathroom sinks are dangerous for breathing treatment components, so once she left, I once again threw away the nebulizer cup, and will be bringing up the issue with the night RT.

I feel really bad "tattling" on her, but I feel like her supervisor really needs to know so that she can be educated on the proper way to do this part of the job, along with the hazards of not doing it correctly. Sidenote:  I had this RT during a hospital stay in late 2011, and the same thing happened, only I couldn't see it happening directly because the bathroom was around a corner.  I mentioned it to her and to another RT then, but apparently not much has changed in the last 2.5 years!

Ok, thats all.  Just thought I'd share my story.  If anyone has any insights for how to deal with issues like this, I'd greatly appreciate it!

Chronic Illness Survey

Hey peeps!  So one of my friends/fellow CF patient is doing a research study for her doctorate studies (woohoo!!  that's a LOT of hard work!!).  To make what I'm sure is a very complicated but interesting study description short and sweet, her research is on empathy felt by family members of people with a chronic illness, and how it impacts relationships, among other things.

So guess what??  That means us!  If you could take a few minutes to either send this survey to one  family member (or several) who lives with you OR fill out this survey yourself if you yourself are the family member living with a child/parent/spouse/significant other, that would be amazing.

Moreover, participating in this survey would really enrich the studies being done by this wonderful, brave young lady (with CF, remember!) on the psychological aspects of chronic illness, which we ALL have had to deal with at some point with this disease!

So please, take a moment to participate if you can.  Thanks so much, and Happy CF Awareness Month!

https://www.surveymonkey.com/s/C5CNWNF