Archive | February 2012

My Ever-Changing Definition of Cystic Fibrosis

** I apologize in advance for the length of this blog post. If you do not make it to the end, I will definitely not be offended.  Some of my posts are written more for myself, my CF community, and my future child/children, rather than just the public.  This is one of those posts, and I felt I needed to provide a lot of explanation throughout.**

Inspired by fellow blogger and fibro, Ronnie Sharpe, I felt it was about time I wrote about my views of cystic fibrosis and what it has meant to me throughout the years.

Those of us who have cystic fibrosis all look at it slightly differently.  Some see it as a burden, others as a constant fear of death, others as just an inconvenience, and still others even view it as a blessing.  For some, the definition of cystic fibrosis is a combination of all of the above terms and more.  Understandably, my definition of cystic fibrosis has changed throughout the years as I’ve matured.

When I was little having CF meant nothing to me. I ran, jumped, played hard, swam, and did everything normal kids do.  I had to do my treatments, which I hated, but that was all that was different.  This idea of CF stayed with me until my senior year of high school.  I often skipped treatments as I got older, but I could do the same things every other teen could do, so I didn’t view it as much of a problem. If anything, I enjoyed getting out of school for CF clinic days!  At this point, CF, to me, was an undefined “illness” that I had to deal with, but rarely affected me.

During my senior year, my definition of CF changed drastically.  I got sick. Really sick.  I entered the hospital with my O2 sats being quite low, and I was told by a doctor that if I continued this way I’d be looking at a double lung and heart transplant in a few years (talk about scary for a 17 year old). Because of this flare-up, I had my first PICC line and was home from school for a long time.  I also began connecting with my first fellow CFer, Jeremy.  Jeremy lived in the same town as me and had been reported in the local newspaper following his successful double lung transplant.  He was 22, not much older than me, and I felt a strong need to talk to him.  I honestly can not remember how I found him, but we formed a quick friendship where he encouraged me to become more compliant.  We never met in person, but we talked for hours on AOL instant messenger.  At this point, my CF was beginning to scare me.  Due to my first hospitalization and my first PICC line, I realized what it meant to be sick because of cystic fibrosis.  Jeremy helped to calm me down, but at the same time I looked at him (22 years old and having a transplant), and I wrongly figured that would be me as well.  I thought I had a good 5 years left, and CF suddenly meant a shortened life expectancy which invariably led to an early transplant and daily worrying.

That fear multiplied enormously when Jeremy began getting sick.  A few months post-transplant, and he was sick with a lung infection.  He struggled off and on for a few more months before unfortunately passing away.  He was the first fibro I had grown close to, and this was the first time I realized that CF was unfair and painful.  I attended his funeral, unable to keep myself composed, and then I became angry and scared.  I feared death, a lot.  I was angry at CF for taking Jeremy at such a young age.  I hated it all, and I saw CF as an evil, unjust monster lurking behind me with every step I took.

Soon after his passing, I looked for CF support groups to help me heal.  To show me that there was more than just an early death with CF.  At the time (around 8 years ago), I found complete negativity. I couldn’t find a single positive story, and my findings only reinforced my fear and anger about the disease.  I ended up at a therapist’s office and that finally helped me to deal with the feelings I had.   I was working on my fears and pushing the fears I couldn’t deal with to the side.  I began forming a closer relationship with God, and I felt better about my life expectancy, my future goals, and basically life in general.  I also realized after talking with my therapist and my doctors that CF affects every single person in a different way.  This comforted me tremendously, and I began to realize that CF could not be clearly labeled and had to be dealt with in different ways for different people.

As I went off to college, I let my fears mostly subside.  I did my treatments, though nowhere near 100% of the time.  I enjoyed my evenings, I went to my first parties, I enjoyed a drink or two, and I fell deeply in love with David.  Between David and my wonderful roommate, Lindzi, I was encouraged to keep doing my treatments.  I had a handful of people (David, Lindzi, Anna, a childhood friend of mine, and a few others) who truly accepted me for who I was, despite the fact that I took countless pills and did nebulizing treatments.  They pushed me to keep myself healthy, and I truly owe them a lot.  Because of this love and support, I became less fearful of my disease at this time.  I sadly, however, hid my disease from everybody I could.  I had done this all of my life, and I still worried about people accepting me.  CF, to me, was something to be kept in a closet, hidden, although worked on privately, daily.

As college came to a close, I found myself engaged and planning a wedding, graduating after completing a double major with honors, and happier than I ever imagined.  By this point, I was starting to do my treatments all the time.  I would occasionally miss one treatment here or there, but I would say I was 90% compliant.  David and I moved in together in May 2009, and even though I was being mostly compliant, my fears came back full-force.  This was the first time I really was fully taking care of myself without help from my parents, and I was worried whenever my cough sounded different or I had a cold.  It took me a good year and a half to get over this new-found fear, but I attribute this period of insecurity to the fact that my life had dramatically changed (in regards to living away from home), rather than because of my cystic fibrosis.  I can still say, however, that CF became a fearful uncertainty, where I always wondered if a cold or cough would land me in the hospital with another PICC line.

Now, in 2012, I honestly view CF a lot differently than I did during late high school and throughout college.  I have been accepted warmly into my CF family, which has helped me maintain a positive attitude.  I have been told by my doctors that my CF won’t be what takes me out, and I really try to look at it just this way.  I firmly believe that CF will be a part of my life I deal with every single day, but it’s not a curse to me. It’s a burden some days, especially during vacations, when I have to take time out of my day for breathing treatments.  It causes fear at times, when my breathing is difficult for a day or when I get sick.  CF makes me sad sometimes as well, especially when I lose a fellow cyster or fibro.  BUT, overall, I look at CF positively.  I see it as an ever-changing disease.  When I was born, average life expectancy was late teens, early twenties.  Now, it’s almost 40.  There are new drugs being developed all the time for this disease, and I am so grateful for that.  Because of these factors, I truly see myself as a grey-haired old lady, holding her grandkids and complaining about these young whipper-snappers who plainly don’t realize how lucky they have it. I firmly plan on embellishing all the “rough-patches” of my childhood in the stories I tell them.

CF may be a part of my daily life, but I’m working as hard as possible to ensure it doesn’t take me out of this world.  I focus on the positives, and I fight every single day to maintain 100% compliance with my treatments and good health.  Today, CF is as much a part of me as my brown hair and brown eyes, but it is certainly not an all-encompassing label which defines me.  It simply is. And I accept it, work to better myself because of it, and live every day to its fullest, a life motto cystic fibrosis reminds me of daily.  

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Routine

Not much has been going on in the Murray household over the past week or so.  The only exciting thing was a visit from my mother-in-law and David’s (our) great aunt.  We had a wonderful afternoon yesterday, and enjoyed spending time outside of our home.  Other than that, it’s been a lot of typical routine days.

David has been working, quite diligently, at getting the rest of his school year planned out. ISATs (state standardized testing) are a week away which is always a stressful time for a teacher.  He’s trying to get last minute teachings in that he feels are important for the tests while still maintaining interest within the classroom (this is much easier said than done).  Other than that, we’ve been enjoying watching a plethora of shows and movies together.  Our movie tonight is Sarah’s Key, and I have heard great things about it.  I hope we enjoy it as much as others have.

I, as you know, have been reading like crazy.  My current book is The Devil in the White City by Erik Larson.  It’s an historical account of the Chicago’s World’s Fair of 1893.  Surprisingly, It took me quite some time to get into the book (over 60 pages which is a lot for me), but now I’m hooked.  I doubt that I would be nearly as interested if it was written about New York, Philly, or any other city; Reading about Chicago’s history is much more fascinating to me since I live close.

I’ve also been focused on getting into better routines. I have been sterilizing my nebulizers (10 minutes in boiling water each day) earlier in the day so that David and I can be in bed earlier at night. We were getting into bed (because of breathing treatments and work) around midnight or 1 AM each night, only to wake up at 6 AM exhausted and cranky.  Our goal this week is to be in bed by 10 PM each night.  We’ll see if we make it.  I also have been setting aside designated times for reading, writing, and working throughout the house. I feel more productive this way, and it’s led me to watch less TV throughout the day.

Other than that, I’m just waiting for another liver test of my enzymes next month, and looking for a part-time job.  Nothing too exciting, but sometimes boring is just what we want and need.

A Beautiful Gift

During the last few days, I have been giving myself a beautiful gift: I have been reliving my favorite childhood books and rediscovering new childhood classics.  By reading these tiny pieces of Heaven, I find myself immersed, once again, in the simplicity and creativity of my childhood.  With all of the stress, financial strain, and personal struggles that adulthood can bring, there is nothing quite like curling up with a beloved book from a simpler time.

It is no secret that I am an avid reader, and honestly I can think of few activities that are more enjoyable than reading a good book.  I was the child who was always told to put my book away in school, and I am the adult who sneaks reading time in whenever she can.  As a child, when I opened the pages of a book, I flew away to a world completely unknown but totally familiar at the same time. Even as an adult, I often imagine that I have my own secret sanctuary that no one else can understand; a world filled with various snippets of books I’ve read throughout the years.  To be fair, I think all voracious readers have these worlds.  It’s filled with locations you dream of visiting, characters you long to meet, plotlines you wish you could live out, and friends you have met along the way.  It’s a special place that no one else will fully understand, and it’s as home as the dwelling around you at night.

My current pile of books 🙂

Because of my love for books, one wouldn’t second-guess that my favorite place (outside of my home) is the library.  Even today, I walk into one and feel the wonder that I felt many years ago as a child. Thanks to the library, I have walked the streets of London, dove within the deepest ocean, had tea with Asian royalty, flown over a mythical school, and encountered numerous other journeys that would never be possible for me in real life. Honestly, what a gift I have been given.

With my love for reading, comes a love for writing. I write daily.  Between my blog, my journal, and my young-adult story I’m working on, I am constantly creating something with words.  Although I’m a very skilled reader (and I pride myself on this), I’m not the most skilled writer. I have years of practice ahead of me before I’m anywhere near being a “good” writer.  And that’s ok.  I know my strengths (descriptive settings and characters), and I know my weaknesses (grammar, fluidity, and a boatload of others).  I work on both, and I enjoy strengthening my writing skills.  Eventually, my goal is to write a book and then publish it. Until then, I will enjoy falling into the capable hands of much more talented writers while I read my books, and I will keep working on writing.

My Insurance Theme Song!

Two nights ago, David and I went to pick up my prescriptions, only to be astounded by the price they quoted us.  To be fair, we had been warned about this months ago from his school, but when it never happened at the first of the year, we honestly forgot about it (that was our mistake).  Suddenly, all of our co-pays (prescription and office visits) are doubled and our deductibles are higher.  For the average person who gets two or three “regular” scripts a month, this isn’t a big deal.  For a CFer who gets 5 or more “rare” drugs a month, this is a huge financial drain.

Because of all of this, I spent all day yesterday on the phone with insurance companies, patient assistance companies, and pharmacies.  It was an exhausting day.  I cried a few times, wanted to yell a few times, and sat frustrated most of the time.  We pay $600 every month for insurance. This was awesome with last year’s coverage, but this year it’s a bit harder to make ends meet.  We did manage to get a few co-pays taken care of via patient assistance programs, but the reality is I still have to find a job (and fast).

About the tenth time I asked, “Hi, what was your name again? Ok, thanks,” (always get names of people you talk to when dealing with this stuff!) I decided I needed to take a break and put on Muse (the equivalent of musical Xanax to me).  Within a few minutes of listening to one of their singles, Uprising, I was ready to take on the world again!  I decided that this song was, quite fittingly, my insurance theme song!  For those of you who have dealt with insurance companies in detail, please take a listen and tell me what you think!  It doesn’t all relate, but I tell you when that chorus came on, I was belting it out!!

Before I watched this video, however, I must say that my parents sadly got the brunt of my ranting and raving about the insurance companies. The fact that insurance companies are all in it for the business of making money rather than helping patients. The fact that they enjoy making us sweat with worry about whether a drug or procedure will be covered.  The fact that they like to make dumb errors just to force us to call in and correct the same mistake four or five times.  Yes, my poor parents got to hear it all yesterday!

All of that said, David and I are figuring it out slowly and surely, and I promise that the insurance companies will NOT destroy us!! 🙂

Room for Improvement

One thing that I like to do at least once a month (though it’s more often once a week) is look at my life and find areas where I can improve. I firmly believe that, as humans, we are prone to error and even negative behavior/words hurt others. I like to reflect on things which I feel that there is room for improvement and then make a plan on what to do to fix the problem. Over this month, I’ve realized a lot of areas that need a bit of improvement in my life.

1) Housekeeping. I am not a good housekeeper, but I wish I was. I have been working on implementing a daily cleaning schedule, originally taken from http://time-warp-wife.blogspot.com/2010/09/home-maintenance-schedule.html, and then adapted to fit my own needs. There are still some days when I don’t get much or any cleaning done (these are usually the days when I’m not feeling well, so I try not to get down on myself for this).

2) Work on my friendships more. I’m also not the easiest friend to have. I often have to change or cancel plans because I’m not feeling well or because someone I’m going to hang out with is sick. I don’t take chances with my health, which means that I do take chances with my friendships, unfortunately. That said, I’m trying to improve my messages sent to friends (through computer or text message), or just letting them know how much I care about them. This is an ongoing process and certainly will not be fixed overnight.

3) Work on being a better wife. My husband is amazing. I could never ask for a better spouse, but I feel like I am not as good about being a great wife. I am working on listening to him more to find out what he needs, and then working to give him what he needs. Right now we are in a rough schedule where my treatments keep us up too late, which in turn causes crankiness and is bad on our health. We are averaging 5 hours of sleep a night – not good. I’m trying to work specifically on this problem right now. The issue is that we are so tired by the time he gets home from work that we take a nap, which pushes everything off by a few hours. I’m trying to push through this so that I can just do my nighttime treatment by 7 PM and be in bed before midnight.

4) Exercise. Ahhh, my least favorite, but most necessary part of my day. I hate exercise, but my lungs crave it. I’m still working on getting in daily elliptical sessions while also including Yoga three times a week. The weather around here has been pretty mild recently as well, which means I need to start working on taking Maya (our dog) for a daily walk. It would be good for her and me.

5) Scheduling. This one kind of ties in to every single other area I need to improve upon. I need to set up a daily schedule for treatments, exercise, sterilization, work time, housekeeping time, and cooking dinner. If I have a schedule that I follow (and stick to for more than a day or two) then our life will be much calmer and easier.

So, for the remainder of this month (and next month) these are just some of the things I’m working on improving in my life. I truly believe we all have these areas in our life, and I challenge you to look at what you can improve upon.

CF Clinic: February 2012

Yesterday was a long but good day.  I had the earliest appointment I’ve ever had at U of C yesterday.  I ended up having to leave my house by 6 AM to make it to an 8:30 liver ultrasound. Overall, the morning commute wasn’t nearly as bad as we expected. We made it up there by 7:45 and I even got in a little early for my ultrasound! This was great because in order to have my liver ultrasound, I was required to fast for 8 hours, which in turn made me quite crabby.

After the ultrasound was finished, my mom (who is amazing and comes with me to appointments when I need her) and I went to go grab some breakfast – I had an awesome Denver omelet which helped fill me up and make me a more tolerable person to be around.  Following breakfast, we headed up to my CF clinic.  My original appointment time was 11:30, but thankfully my clinic got me in much earlier! I ended up getting into a room at 10 AM.  I ended up seeing my respiratory therapist, my nurse practitioner, and my CF doc so it was (as always) a long appointment.  Here’s an overview of what was said/done:

Lung Function: My FEV1 was surprisingly unchanged since the previous appointment.  Ok, technically it was down 1% but that’s just a normal fluctuation.  Last time it was at 2.74 L which equates to 87%.  This time it was 2.72 L which equates to 86%. I’m definitely thrilled about this result.  Due to the few instances of hemoptysis as well as stopping the hypertonic saline 7% (due to hemoptysis), I expected it to be down.  I will gladly take that number, however!  My FVC was down a bit.  It was (not sure about numbers on this one) 140ish% last time, and I was down to 4.21 or 107% this time.  I’m not considerably concerned about this change.  A surprising one was my lower airways, my FEF 25-75% number.  Last time it was at 13% but this time it was up to 39%!!  Overall, great numbers.  Also, my docs listened and couldn’t hear a single crackle in my chest.  Very happy about my lung function this time around.

Weight: Officially up to 119.6!! The docs are very happy, and I do believe this may have something to do with my increased lung function overall.  I’m putting, and keeping, weight on which in turn makes me healthier.

Changes to my Current Routine: Due to increased heartburn, I’m going to be started on Prilosec.  This should help with the heartburn as well as help my enzymes work better, so it sounds like a great plan to me!  I’m also going to start on Advair which should (hopefully) help to open up my lower airways and help increase my exercise tolerance, since I have stress-induced asthma.  Basically, Advair is a long-lasting bronchodilator with a bit of a steroid in it. I’m excited to see how it works! In addition to this, I’m going off of 7% hyper-sal for good, and I’m going to start mixing my own 3%.  If I continue to have hemoptysis with this concentration, I will be put on Vitamin K but continue the hyper-sal.  My doctors really want me to get the benefit from hyper-sal, as I have never breathed better than when I was on it.

Liver: We should find out about my liver enzymes (previously elevated) and my liver ultrasound in a few days.  The tech said that my liver looked really good, but I have to wait to hear from the doctor to be sure.  Since CF liver disease, or a fatty liver can develop in CF patients, it was important to get the ultrasound done.

Overall, fantastic news! This was another clinic visit that made me realize just how blessed I am. I work hard to keep myself healthy, but I could be working even harder – EVERYDAY exercise, that’s my goal!

CF women are different. . .

When I began blogging, I also began seeking out fellow cysters (CF women) to talk to, ask questions to, and just to have someone to relate to.  Over the last few months, I’ve discovered that a CF woman is, in general, a totally different kind of woman. I’m not saying that we are better or worse than the normal woman, but I am saying that we are totally different. Let me explain (I will refer to CF women collectively as “we” for the remainder of the blog):

We have, in general, managed to find the really good guys to marry.  I have read through stories, blog posts, or individual conversations about many of the husbands of CFers.  I have found that they are, more often than not, really special, caring, genuinely nice, and dedicated husbands.  In addition to this, many of us are married by our early twenties and already looking to start a family. I think this deals with the fact that we are forced to grow up earlier.
We tend to be, on the whole, really happy people.  The vast majority of us don’t sit and complain about having CF. We might have a day or two of moaning to each other about it, but then we get over it and move on.  We tend to be really optimistic and supportive of each other.  We tend to share ways that we are seizing life’s golden opportunities.  We truly love to hear when a fellow cyster’s lung function is up or that she manages to get pregnant.  We root for each other when we’re in the hospital.  And this is all within our group.  Outside of it, we tend to live for the moment.  We often realize the blessings we have and we enjoy them as fully as possible!
We understand just how necessary patience is.  With the groundbreaking FDA approval of Kalydeco, I was reminded of just how true this statement is. We wait years to get a medicine which will help improve our lung function or quality of lives.  We wait hours each time we have CF clinic days.  We often wait months to years for a transplant when we have to have one.  We also often wait years to get pregnant. Many CFers have fertility issues which makes getting pregnant very difficult.  And, most importantly, we are still waiting for a cure.  If we didn’t have patience, we wouldn’t make it through.
We are no strangers to hospitals. Whether it’s due to the clinic appointments every 3 months, numerous blood draws, additional doctor appointments (for example, I have had or still have to visit an ENT, endocrinologist, cardiologist, geneticist, and liver specialist), or the unfortunate but necessary hospital stays, we have all seen our fair share of hospitals.  I personally visit the University of Chicago, and I have now officially been to every single floor of that building to see a different doctor! I probably know that hospital better than some interns!
We have thought about our mortality, usually extensively. This just goes with the territory when you have CF.  Having a disease where the average life expectancy is only 38, means that you think about death a lot. We wonder which cold we won’t be able to bounce back from, when we’ll have to have a transplant, when we will become resistant to all current antibiotics, and more morbid topics that I won’t go into.  That said, we often tend to focus on our mortality a bit too much.  I remember being sure I was going to die early, but then asked my doctors who in turn said not to worry about my life expectancy so much. They told me I was healthy, compliant, and positive. Those three things will take me far.
And the final way (though I am sure there are many other ways) we are different is . . . .
We talk about anything and everything without getting grossed out.  Now, don’t get me wrong. I have female friends and we talk about a  lot of stuff, but my cysters and I just take it to the next level.  So what do we talk about that normal women either have no reason to talk about or are too embarrassed to talk about?  Mucus? Yep! Blood? Yep! Comparing scars and surgical procedures? Yep! Boogers? Yep! Ovulation? Yep! Life expectancy? Yep! Bathroom issues? Yep! With all of those topics on the table, we even share embarrassing stories which usually entail one of the above topics, if not more than one!
So overall, I have to say that CF women are different, but it’s certainly not a bad thing.