CF Awareness Month Day 2 - The First Year

Since I was so young at the time of diagnosis, I don't really have many memories of that first year.  Honestly, though, I don't think it was all that terrible (my mom and dad might have a different opinion though, haha), and definitely not my worst (that award is probably a tie between 2014 and 2016).

I do remember (vaguely) those two initial admissions right after I was diagnosed.  I also remember my mom splitting open my enzyme pills and sprinkling them in applesauce during each meal.  Luckily, when I was diagnosed (and for many years later) my lung and breathing issues remained at a minimum - and once I started taking enzymes, my digestion and growth issues cleared up quickly, and I was a healthy, happy kid.  I occasionally did breathing treatments, but they weren't required every day - mostly just when my asthma kicked up with a weather change.

Also, the year after I was diagnosed (1989) was when they discovered the CFTR (Cystic Fibrosis Transmembrane Regulator) gene.  This was a huuuuuuuge breakthrough, and paved the way to a more complete understanding of the disease and also to many of the treatments available today.  I'm so glad my parents were given this glimmer of hope to hold on to so soon after my diagnosis.

I'm sure my parents had a much different view of that first year - I'm positive it was filled with tears, and prayers, and educating themselves as much as possible on how to best combat this disease.  At some point around this time, my mom (who was studying to get her master's in nutrition and become a registered dietician) decided she wanted to do her dissertation on CF nutrition.  The information she gathered at that time, and the updated researched she continued to follow throughout my life had a huge impact on keeping me healthy.

If you're a parent going through the first year of a CF diagnosis for your child, you are not alone!  Please feel free to reach out to myself or one of the other adult CF bloggers!  We would be more than happy to give you information (and, hopefully, encouragement and hope!) about this disease, its impact on our lives, and the current outlook for the future!  I also encourage you to find other parents going through the same thing, as well as some that are already a few years into the CF battle, as they can become friends and lifelines as you pull together your new life during this first year and beyond.

CF Awareness Month Day 1 - Diagnosis

So I've always wanted to do these blog topics during CF Awareness month, but always end up super busy around this time of year and don't get around to it.  This year May looks to be a lot more wide open, so I thought I'd give it a try! :)  Also, I've looked and looked and can't find anywhere that these days and topics are listed on a website, so I'm basically straight-up stealing the images from other people's blogs who have done them before.  Hopefully I'm not infringing on any copyrights!

UPDATE:  After my original post, I spoke with my mom about the details around my diagnosis again.  Turns out I had several points of the story pretty wrong, haha (oh, those fickle two-year-old memories...).  So below, please find my updated diagnosis story with input from the mom. :)

The year was 1988 - high water jeans and Madonna had taken over the world, and in November of that year, my parents' lives were about to change forever.  Once I reached the age of two and a half, my pediatrician decided to run the test for cystic fibrosis because I'd been having lots of asthma symptoms and my mom had noticed a few strange things about my eating habits.  I was actually a pretty sturdy and healthy toddler, but I was hungry ALL the time, and apparently I pooped a lot, and the stools were often oily-looking.  My mom was feeding me all the time, but I was a good, healthy weight.  My pediatrician didn't really think there was any chance I would come back positive for CF, but the asthma symptoms and oily stools were enough of a signal she felt she should at least rule it out.  Everyone was VERY surprised when the sweat test came back positive.

While I don't remember the initial sweat test, I do have a few "flashback" memories to the day of the more extensive testing.  In fact, that day and the days that followed are probably my very earliest true memories.  For some reason my dad couldn't come that day, so my wonderful grandfather came with me and my mom.  I remember getting x-rays done and sitting in my mom's lap in the waiting room with a sucker.  Immediately after my diagnosis was confirmed, I was admitted into the hospital for IV antibiotics, breathing treatments, and observation, not because I actually needed it but because it was standard protocol at the time.  I was admitted again two months later for asthma symptoms (aka, increased cough.  This could have been my CF, or it could have just been the asthma I inherited from my dad's side of the family.  We'll probably never know).  Luckily, I had a good long stretch after that, and didn't need to be hospitalized again (for a CF exacerbation) until I was 25.  

I have a few random flashbacks from those initial admissions, too - I remember giving the nurses hell when they tried to put an IV in, haha.  Seriously, I don't think I've ever fought so hard and with so much terrified and righteous anger again in my entire life.  They ended up taking me down the hall to a room where several of them held me down while I was kicking and thrashing so another one could insert the IV.  My mom recently confirmed this memory, and said the whole process was actually so horrible that she filed a complaint with the hospital afterward.  I also remember lying in a crib with REALLY high railings, and also going down the hall with my friend (who also had CF) to get chocolate milk out of the fridge.  And I remember shortly thereafter my mom starting to sprinkle my enzyme balls in applesauce at every meal.  For the most part, I was pretty cool about the whole thing. :)  My mom says that the very first day I had to start taking the enzymes, she sprinkled some in applesauce, called me over to her, and said "These are going to make your tummy feel better."  My response?  "Ok!"  And life went on.  Thankfully, I never fought my parents on taking pills, and I always loved eating, so weight was never an issue like it is for some CF patients.

Really, life with CF is all I've ever known, and has been a part of who I am since I can remember.  I'm sure my parents were terrified to get this diagnosis of their precious only child - back then, the median ago of survival was only around 14 years old.  But thankfully God placed me with two extremely determined parents, especially my mom, who more or less dedicated their lives to making sure I had a full one to live.  And, so far so good - this month I turn thirty-one, I'm married, I'm an attorney, and I'm definitely still kicking!  

That one time when my lung collapsed, then collapsed again, then I quit my job, then I lived in China for a month...

As you can maybe tell from the title of this post, a few major life events have happened since my last post over a year ago.

Actually, all of the above-mentioned events have been squeezed into a very intense past six months, beginning in November 2016.  The rest of 2016 was kind of an "eh" year - not bad, but certainly not great health-wise.  I continued to love my position at Legal Aid, and I was able to grow leaps and bounds in my career as a family law attorney, but it was at the cost of excessively high levels of stress pretty much 24/7, which eventually took a clear toll on my health.  I was in the hospital three times in 2016, plus an additional course of at-home IV antibiotics in early 2017, which added an additional layer of stress to an already stressful job.  There were some wonderful things, too, of course - my husband and I took a lovely vacation last April, and we bought a beautiful new house that we intend to be our "forever home."  Also, our family that lives in China came back to the US to visit for six months, so we got lots of time to visit with my in-laws and our little nieces, which was special.  But all-in-all, 2016 is not going down in the books as one of my better years.

The events that earned a place in the title of this post are each too detailed to group into one post, so my plan is to come back and do them justice by doing a separate blog post on each topic over the next few weeks.  For now, though, here is an overview of the craziness that has been my life over the past few months:

In November 2016, my lung collapsed not once but twice (actually, technically I think it was three or four times, but everything is kind of grouped together into two major lung-collapse episodes in my head).  The first time was relatively minor, and having never had a pneumothorax before, I actually walked around with the collapsed lung for about 5 days, completely clueless.  That first collapse healed relatively quickly and with minimally invasive procedures once the issue was diagnosed and I was admitted to the hospital for treatment.  The second collapse a few days later was way more intense and scary and took almost two weeks to fully resolve.  The second round was terrifying and painful and has left me with a level of anxiety and mistrust of doctors that has been a real challenge to overcome.  As each day, week, month goes by since the pneumothorax (pneumothoraces?), I can feel the various physical and emotional wounds healing, but I'd be lying if I said the whole experience didn't change me in a very fundamental way.  But more on that in the next post... 😉

After the pneumothorax episodes, I headed back to work.  I was weakened, though.  Being a family law attorney for clients who are domestic abuse survivors is extremely rewarding, but can also be unbelievably draining.  I'd always struggled with leaving my job at the office, and in this line of work, constantly bringing work problems home with you will wear you down FAST.  I was stressed about keeping my clients and their kids safe, I was stressed from feeling behind after missing 3+ weeks of work, and I was stressed about how big I'd allowed my caseload to become.  On top of that, balancing  my health needs and depleted sick leave left me feeling like I was constantly treading water, barely keeping my head above the surface - I'd earn some sick and vacation leave, and immediately need to use it for doctor appointments or actual sick days.  Around Christmastime, my husband and I started seriously discussing the option of quitting my job.  A whopper cold I caught in early January knocked me down even further and sealed the deal that it was time to leave my beloved job.  It was an extremely difficult decision to make, but ultimately I knew it was for the best, and the timing was as good as it would ever be.  I put in my 30-day notice, and wrapped up my short but wonderful career at Legal Aid at the end of February to focus on healing and gaining back my health.

The improvement I felt upon leaving my job was almost instantaneous.  I caught up on much-needed rest.  I went to non-pulmonary-related doctor visits I'd been putting off for months because I hadn't had the time.  I no longer woke up in the middle of the night, every night, stressed about work that needed to be done or decisions that needed to be made in my cases.  I cleaned my house.  I organized my closet.  I had another sinus-clean-out surgery to get me in tip-top shape.  I spent time with my grandmother, who passed away shortly thereafter.  I helped with funeral arrangements and spent quality time with other grieving family members.  My lung function never shot up, but it did seem to be improving gradually.  I felt stronger and much happier.

Then the opportunity of a lifetime popped up - my husband had to go to China for two weeks on a business trip, and afterward he hoped to stay a little longer to go visit his brother and family who live there.....and I wasn't working.....and I was feeling stronger and healthier every day....see where this was leading?

I'll include more detail about the ridiculous back-and-forth of making the decision to go or not to go in a dedicated China post- but, as you can tell from my post title, ultimately I DID go...and it was frickin awesome.  Was it sometimes uncomfortable?  Yes.  Were there times I was a little terrified something might happen and I would die in the middle of the Chinese rainforest?  Of course.  Was the experience of going to Asia and visiting a new country and spending time with my sweet little nieces worth a little discomfort and practice controlling my new-found anxieties?  Absolutely.  I can't wait to tell you more about the trip in a later post.  😀

So that's about all for now.  Thanks for sticking with me to the end of this post - I look forward to writing more in the coming weeks and months about the craziness of life these past few months, and hopefully about the not-so-craziness of the months to come.  I'm glad to be back.

Much love!

2015 - One of the Best Years Yet

2015 in Review.

All in all, 2015 was a pretty amazing year in my little world.  I have been an abysmal blogger this year, but that doesn't mean there wasn't lots going on.  So here is a little recap of what the year looked like!

I hesitate a bit to publish this kind of post.  The reason is because I know a large portion of the people who read this blog are CF patients or family members of CF patients, and collectively we ran the full gamut when it comes to health and statistics in 2015.  While this happened to be a fantastic year for me, there are many out there who had an incredibly difficult year, and then again many others who fall somewhere in between.

Sometimes when I'm going through a rough health patch, reading or hearing about how "great" a fellow CFer is doing can make me sad and, honestly, stirs up feelings of discontent and envy in my heart.  That is NOT what I want to accomplish here.

Because, oftentimes, reading those enviable posts where I see a fellow CF patient thriving while I struggle also gives me inspiration and hope.  It's a reminder of possible better days, and gives me a little extra drive to work toward gaining those easier days once more.  It makes me even more determined to do whatever it takes to get them back.

To put things in perspective, 2014 was a rough year for me.  Like, a really REALLY rough year.  I was hospitalized multiple times, learned my bacteria strains were nearly pan-resistant, and had begun to seriously question what my future could possibly look like.  I started to convince myself that my traveling days were over, which was an incredibly difficult emotional hurdle seeing as traveling is one of my biggest joys in life.  Even harder, though, was when I began to question whether all this back-breaking work I'd put in at law school would ever amount to anything, because I began to seriously doubt I could ever hold down a job as an attorney with my health so unpredictable.  And this time last year, as I read posts from other CF bloggers discussing how amazing 2014 had been to them, it was hard not to be a little (ok, a lot) jealous.

And yet, there was a silver lining to reading those posts, as well.  Hearing about other people's good years reminded me of tough years I've had in the past, followed by amazingly healthy and happy ones.  It pushed me to work a little harder to make 2015 a better year than 2014.

And so, keeping in mind that many people out there had a rough year in 2015 and are more than ready to bid it "adieu" and "good riddance," I present to you a recap of my own highlights of the year.  Ultimately, I hope that this post serves as a reminder to those who struggled in 2015 that this disease we fight is often unpredictable.  We will have good days, months, even years - and we will have bad ones, too.  But during the bad times, don't lose hope, and look for inspiration wherever you can find it.  For me, when that next round of "bad days" comes along (and we all know they will eventually come back around), I hope this post will serve as a reminder for me of the possibility of good days yet to come, give me that little extra "oomph" to keep fighting, and remind me to be at peace with whatever season it is God has placed me in at that time.

So without further ado, here is my 2015 in Review:

January - Bar Exam Prep.  Literally, that's the only thing I did all month.  I barely saw my family, much less my friends.  Early in the month, I had an old PICC line pulled that had been placed when I was in the hospital in early November.  Knowing I am prone to get sick in the Jan/Feb season every year, I asked to keep the PICC in until I'd finished the bar exam in Feb.  My docs consented, and I even did a second round of IVs in late December because I felt I was starting to slip a little and wanted to be in top-notch health while I studied.  However, once that round of IVs wrapped up in early January, I decided I was done keeping up with the PICC line, and my docs agreed it was best to pull it and just place a new one if worse came to worst and I needed more IVs.  So, as of January 8, 2015, I was PICC line free!  This month also was the start of my becoming extremely diligent when it came to therapy compliance.  My biggest goal in life at this point was to NOT need the hospital until after the exam (a big aspiration as I'd consistently needed IVs in February for the past three years).

 My "winter" boards and Bar Exam motivation

February - Bar Prep on steroids.  Prednisone-like spontaneous and irrational tears very much included, haha.  It was hands down the most challenging academic feat I've ever attempted, and February was about the time the once-weekly meltdowns started, where I would randomly burst into tears because it all felt like too much.  I gave myself about 60 seconds to despair each time it happened, then wiped my nose, took a *deep* breath, and started my next practice question.  Studying bumped up to a pretty steady 7 days a week, averaging about 10 hours a day of studying (less on Sundays).  It was also about this time I had to deal with some "new insurance" issues, namely being that they didn't want to cover my inhaled colistin Rx.  I may or may not have kept a running list of people I'd snapped at and needed to call and apologize to the week after the bar exam....  And yet, amazingly during this time, although I could tell my lungs were struggling and needed that colistin, my health remained remarkably stable.  The actual exam was Tues-Thur of the last week of February, just in time for our first snow/ice storm of the year!  It was crazy timing, but didn't stop the test.  I'll never forget the unexpected rush I felt as soon as "Time!" was called after the afternoon session on the last day.  Until that exact moment I'd been so focused on survival that I hadn't let the thought of being "done" set in.  At that point, it was over - I'd survived taking the test, given it all I had, and now all that was left to do was wait 2-3 months to find out if I was considered good enough to be admitted to the bar.  The waiting game began....

March - March was a pretty chill and relaxing month.  Because I'd quit my internship at Legal Aid my last semester of school to focus on health and studies, I had no job lined up directly after the bar exam, and for that I am now sooo grateful.  It was a wonderful and much-needed month to slowly unwind from the stress of test-taking and get back into the groove of being a productive member of my household.  We had a second huge snow storm come through the first week of the month, forcing the hubby and I to stay inside and just enjoy being home together (and building a snowman, of course!).  Where we live, snow never sticks around for long, so by the second week of March we were clearly entering spring.  At this point I continued fighting to get my colistin, as well as approval to start a monthly shot called Xolair, which targets allergy-induced asthma symptoms.  My mom and I also took a fun mother-daughter weekend shopping trip to a massive outlet mall town a few hours away.  Sadly, this was also the month I lost my first friend to CF.  That is a true statement two, ways - he was the first friend with CF I've had pass away, but he was also one of my very first friends, period.  Our moms met in CF clinic right after each of us were diagnosed, so James was a big part of my earliest memories.  He was a truly good man who I know is still missed by many.

April - Spring arrived in full force with record-breaking rains and weather changes.  I started working with a personal trainer twice a week to build up my endurance.  Still fighting for the colistin, I finally just had to pay out-of-pocket for the meds while the appeals process was going on (luckily colistin is an old enough drug it's not nearly as expensive as Tobi or Cayston would be - but it was still a really big chunk of change!!).  I felt an improvement in my lungs within a day or two of starting back on the colistin once it arrived.  This was also one of my favorite months of the year because this is when the hubby and I took my graduation trip to London/Paris!  This was made an even more special time because, from the bar exam up until this point, I really felt like I was constantly waiting for the other shoe to fall, for my health to take a sudden nose dive and land me in the hospital again.  I lived in a near-constant state of worry for when this was going to happen and disbelief that it hadn't already.  I became increasingly concerned as our two-week trip abroad approached, but once that colistin arrived, I started to feel more hopeful that maybe this streak of good health would continue through our trip.  And it did!  We had an amazing time - our first weekend was spent in London, where we packed in a special dinner, a street-food walking tour, an historic pub walking tour where we sampled a variety of beers and ales (seeking out and trying traditional and craft beers in different cities is one of our hobbies), an amazing church service at an  Acts 29 church plant in the city (a network of churches our own home church belongs to), a Sunday roast, and a day of exploring the more traditional tourist spots.  Then we took the eurostar to Paris where we met up with my family.  We spent several days exploring the city, and also visiting with my french family that lives in Paris and a small town a few hours south.  The trip was lovely on so many levels - and, to top it all off, while in Paris on the evening of April 30, I found out I passed the bar!!  All those years in school and all that hard work studying had paid off - I was officially an attorney!  Now I just needed to work on that tiny little detail of getting a job....

                                    

 

May - We got back from our trip in early May, then turned around 2 days later to head to the state capitol for my swearing-in ceremony.  This month the hubby and I celebrated our 2nd wedding anniversary, and I ushered in my 29th birthday.  This birthday was a significant improvement from last year's which was spent incredibly sick at a friend's wedding, followed by admittance to the hospital the next day for a 19-day stay.  With that in mind, this birthday was pretty special by contrast.  My parents moved out of my childhood home (and into my grandmother's old home - a weird switch, but at least they're still somewhere that feels comfortable and familiar!). This is also the month I officially started the Phase 3 trial for a the vertex 661 + kalydeco combo.  This combo is supposed to be the 2nd generation of Orkambi, which was vertex 809 + kalydeco.  May began the 6 month trial period where I was either receiving the meds or a placebo.  This was exciting because at the time Orkambi had not yet been released.  Also because they gave me a super trendy grandpa watch to wear 24/7 for 6 months.  I'll eventually write an entire post just on the trial.  This is also the month I started taking my Xolair shots AND the month my insurance finally approved my colistin!

June - Highlights for this month included three out-of-town weddings for friends and family, and an out-of-town conference with the hubby for the annual meeting of our state bar association (hubby is an attorney, too).  This is also the month I interviewed for a family law staff attorney position at Legal Aid.  This was literally my "dream job" coming out of law school - I wanted to be back at this organization, working with those colleagues and with the demographic their office served.  This interview was followed by yet another waiting game.  My health held steady.

July - The job waiting game continued.  And then came an awkward conversation with a friend from law school who, while we were trying to plan a time to meet for lunch and catch up, mentioned she was starting at Legal Aid the following week as their new family law attorney, so she'd need to see what her schedule was like.  I couldn't help but laugh (and yes, cry a little later on) - mostly, though, I was just glad to have heard something about the position being filled so I could move on.  Health was still holding strong.

August - In August, the hubs and I participated in our first ever CF fundraiser.  It was our local chapter's CF Climb, and our team raised over $5,700 for CF research!!  It was a really fun time with friends and family - and I even did the climb!  I only did the half race of 20 floors instead of the full 40, and my time was next to last, but I was still awfully proud for finishing!  And to top it all off, "I" won first place for highest individual fundraiser.  The generous outflowing of support we received from friends, family, and beyond was incredibly touching.  Also during this month, I began putting plans together with a friend to open our own private practice law firm, and I took in a few estate planning clients.

 

September - The law firm partnership discussions continued as I tried to re-learn my wills and estates courses and apply them to real practice.  We celebrated my husband's 32nd birthday, and welcomed the official start of fall.  And then, completely out of the blue, I got a call from Legal Aid with a job offer.  It caught me totally off guard, especially considering it had been over 3 months since my interview and all my time and focus had shifted to researching starting my own firm - but after about 3 seconds of hesitation, I knew deep down that a job with Legal Aid was right.  I tentatively accepted the offer on the spot, then took a day to seriously pray and talk about it with my husband.  And the more we prayed and talked about it, the more peace I had about accepting the position.  It was a very difficult call to my friend and would-be partner to tell him I'd received the offer and planned to take it.  It was also scary to think about how my health would respond to a full time, 40/hr week job where people would be depending on me to consistently show up with my A-game to fight for the best interest of their children in court.  But ultimately I decided to embrace this new challenge and take a leap of faith that God would not have so clearly guided me to this position only to have me fail miserably at it.  I accepted the job as a family law staff attorney and started the last week of September.  And I've honestly loved every minute of it since.

October - I continued to love my new job.  What I did not love so much, however, was all the germs I was suddenly exposed to by re-entering the workforce.  Less than a week and a half into my new job, I came down with my first cold in almost a year (ugh!).  Thankfully it was relatively mild, and with the help of some oral antibiotics and prednisone, I was able to make it through without any need for further medical intervention.  It did, however, leave me with incredibly raspy lungs at night - I was able to breathe deeply, but woke up several times throughout the night with a drowning feel because of the liquidy junk that had settled in my lungs and needed to be cleared out.  That fun lingered for at least 6 weeks.  But on a happier note, another way cool travel experience happened this month!  I went to Berlin with my husband and dad for a long weekend to attend the wedding of a dear friend (she was an exchange student who was my age and lived with my family for a year in high school).  The wedding and the bride were absolutely beautiful - what a fun memory!  It was also my first trip to Berlin and northern Germany, and the fall was the perfect time to go, I think.  The weather was cool and a little rainy, but the autumn foliage and colors were breathtaking.  We arrived in Germany on Thursday afternoon and left to come back home on Monday morning - it was a whirlwind trip, but well worth it!  Also in October was my first time to appear in court as an attorney.  Woohoo!

November - More settling in to my new job.  This is about the time I finally started feeling like a "real" attorney (well...sometimes...).  I continued needing oral antibiotics and prednisone on a pretty regular basis, but always perked up immensely once I started them.  This is the month I completed the first phase of my Vertex 661 trial and officially rolled over into the second phase where I was for-sure getting the real drug.  I saw little if any change, so I'm pretty sure I've been on the drug the whole time, but it will be awhile still before I know for sure.  Hubby got tested this month to find out if he was a CF carrier for if/when we decide to start trying for a family (finally - figuring out how to get him tested proved way more difficult than it needed to be!)  After an uncomfortably long wait, we got the results and YAAYY!! He's not a carrier!!  That was a huge relief, just so we're more informed as we move forward with these family decisions.  Thanksgiving came and then we decorated for Christmas - my fave.

December - Somewhat surprisingly, December was a rather uneventful month.  Work started getting busy as my case load increased, and there was the usual hustle and bustle around Christmas to keep us busy.  I had the chance to catch up with several friends who were back in town for the holidays, including one of my very best friends whom I hadn't seen since my wedding over two and a half years ago!!  Her and her husband live and work in New York City, so visiting takes a real effort - but we finally made it happen when they came to visit for one night on their way to visit family a few hours away, and it was awesome.  Then it was time to celebrate Christmas with our families, and then hubby and I had our own Christmas at home on New Year's Day like we do every year (whence he spoiled me, per usual :) )

I ended the year feeling a little run down, but am still doing well enough the doctors don't seem to think I need the "big guns" of IVs just yet - that means I've officially made it a full year with no IVs and over 14 months out of the hospital.  (That hasn't happened since 2011!)  We'll see what 2016 holds!  These early winter months sure are the hardest!

So, there we go - 2015 in review.  Really an all-in-all fantastic year.  I can't wait to see what new adventures (and challenges!) 2016 holds.  (Sidetone:  I turn 30 this year.  Whooooaaa.)

Happy belated new year, y'all!!

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.

But.

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.

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