CF Awareness Month Day 7 - School

Since I didn't have to start dealing with hospital admissions until I was in my mid-twenties, CF and school were not a complicated mix for most of my life.  Growing up, I occasionally had to miss school because of routine doctor appointments, and I think my parents were a little more lenient with allowing me to stay home from school when I wasn't feeling well or was coughing a lot, but it was never anything that made me feel different from my other classmates.

In elementary school, I had to leave my enzymes with the school nurse and go visit her during lunch every day to get my pills.  Thankfully it was a small school, so the nurse knew me well and it was never a big deal to go get my pills.  In fact, it made me feel kind of special because it was something I got to do that the other kids didn't, haha.  I actually remember that in elementary school, I had a list of three things in my head that made me feel special and unique from the other kids in my class (in a good way!  I was proud of these differences!):  1) I was an only child; 2) I had no middle name; and 3) I took enzymes.  This is probably a good testament to how my parents raised me to deal with and understand CF.  :)

By the end of elementary school, I just carried my enzymes with me in my purse or backpack, and this continued through high school.  I'll be honest, I wasn't always great about remembering to take them, but my weight did fine so I must have remembered often enough.  The enzyme forgetfulness did often lead to tummy issues while I was at school, though, which could be embarrassing (and painful!).  Slowly, I learned my lesson, though.

My lungs were good enough to not need daily breathing treatments until the end of high school, so breathing treatments, etc., were never a big issue at school or when I'd travel on group trips, etc.

College was a learning curve on taking care of my own health.  On top of having complete freedom/responsibility for the first time in my life, it was unfortunately also the time my lungs started getting worse and needing more attention (aka: I needed to do my breathing treatments and Vest every day).  I did ok keeping up with my oral medications, but I was not great at remembering to take my vitamins.  I also almost never missed an albuterol treatment, but I rarely did my hypersal or pulmozyme, and almost NEVER did my Vest.  My roommate and I got along fine, but we weren't especially close, and while she knew I did breathing treatments every day, I was embarrassed to do the Vest around her because it was so loud and weird.  I wish I could have been braver and more responsible back then, because my lungs definitely took a downward turn toward the end of college.

My last experience with CF and school was when I returned to law school in my mid-twenties.  During law school I had to be admitted to the hospital several times (4 admissions, and 2 at-home-only IV courses, and 3 sinus surgeries).  This was challenging because we were only allowed to miss a certain number of days each semester or we wouldn't get credit for the class.  Really, this just meant I couldn't let myself play hooky very often because I knew I might need those absences for a real reason later. :)  And, on one or two occasions, I actually left my hospital room to "go for a walk", which included a driver waiting downstairs to help me make a quick getaway to attend my class right down the road for an hour or so. 😆  I didn't tell all my professors about my CF, even when I had to be admitted during the school year, but twice I had to:  once when I was admitted right before final exams, and again when I needed an extension on a paper due to being in the hospital.  Everyone was very polite and accommodating both times I needed a break.

Learning to manage school and CF as a young child is an important part of learning to grow socially while also learning how to deal with CF's requirements and complications.  College is an important time to learn autonomy, both as a person and as your own caregiver.  This is the time you have to learn to take of yourself FOR YOURSELF, not for your parents or whoever has been driving you to do treatments up until that point.  And further education and CF is good practice for learning how to balance CF needs with the demands of the workforce you will someday enter. 

CF Awareness Month Day 6 - Clinic

My clinic visits are usually pretty simple.  Thankfully, the clinic I've attended most of my life is now only a mile and half from my house, so I don't have to worry about travel.  In college, I didn't have a certified CF center nearby, so since I'd have to travel to get to a center anyway, I actually would take a long flight a couple times a year to attend clinic at the Stanford CF Center because they are one of the best.  Looking back, that seems very random, but they were a VERY good clinic.  Since I didn't have a history of needing to be admitted, this actually worked just fine at the time.  Once I graduated college and moved back to my hometown, I went back to attending the same CF clinic I'd attended for the first several years of my life.

When I was younger, I used to get really stressed about clinic visits because I was always afraid I wouldn't "pass the test" with my health and they would tell me I would need to be admitted to the hospital or put me on another medication.  These days, though, I guess I have a more grown-up attitude toward it all.  I appreciate the doctor's hard work to keep me healthy; I want to know how I'm doing, even if the answer is not great; and I've learned how to speak up for myself a when I feel like doctors or other clinic workers aren't listening to me.  My CF center isn't perfect, but I feel like the doctors and nurse practitioners really do work hard and care about the patients.

I get the impression this is a little "behind the times" in CF infection precaution, but our clinic still has a big waiting room where all the patients wait together before being taken back.  I think they try to bring us back to a room as quickly as possible, but there's always still a little bit of waiting in the waiting room.  We're required to wear masks, though, and we all keep a respectful distance from anyone else wearing a mask.  Since CF patients don't get to meet in person very often, I secretly like to look around and sneak glances at the other patients sitting in there to figure out how we might be alike or different. :)

Once in a room, its usually about 2 hours of a parade of doctors, nurses, respiratory therapists (RTs), nutritionists, and social workers.  

I'm not sure what P.A.T.S. is.  If you know, please enlighten me in a comment below! 😆

CF Awareness Month Day 5 - Diet

Just like everyone's lung health is different with CF, so are everyone's dietary needs.  Some people struggle with both.  Others can have fantastic lung health but struggle keeping a healthy weight.  Others cans have not great lungs but never have to give calories or weight gain a second thought.  And still others may have had both healthy lungs and a healthy weight, but now struggle with keeping the weight on as their lung function declines and their body has to work harder.

I happen to fall in the next-to-last category.  My lung function is not stellar, but I've never really struggled to keep a healthy weight.  There was a brief period of time around 2011 when I first got very sick and refused to get help (see my last post for more details on that) that my weight dropped significantly, but it popped right back up again once I fought off the infection and my appetite came back.  Otherwise, I've always been a very average-sized person who loves food and happens to get to  eat anything she wants. :)  

Fun fact:  getting older has meant a slowing metabolism and a little extra pudge around the middle for this gal.  It's been an internal battle between my inner-CF patient which cheers and considers it a victory, and my womanly pride, which cringes and balks at buying bigger clothes, haha.  I just find it so interesting when I have moments of realization that my body is changing in a way completely normal and unrelated to having cystic fibrosis.  

I do have to take pancreatic enzymes (Zenpep, not Creon) every time I eat or drink something with fat in it, or else I don't absorb any of the fat or fat-soluble nutrients.  Plus my stomach gets upset. :(  But you know what's a little crazy?  I was diagnosed with CF when I was 2.  I'm about to turn 31 at the end of this month.  That's roughly 29 years of needing to take enzymes with every single meal and snack I've ever eaten.  AND I STILL SOMETIMES FORGET TO TAKE THEM.  How does that happen??  I really just don't know.

That's all for today.  Stay tuned for tomorrow's post!

CF Awareness Month Day 4 - Illness & Admissions

I was extremely lucky in that, other than the two short admissions when I was first diagnosed, I didn't need any more admissions for CF exacerbations until I was 25.  I did break my arm twice, which required ER visits (I was a fearless climber), and the summer I turned 18 the doctors convinced me my sinuses were looking prettttty awful and I should have sinus surgery to clear them out and make new "windows" for drainage.  I agreed (this was the "big" sinus surgery I sometimes refer to in my blog) and ended up holed up in the hospital for about a week recovering.  During that time, they also placed a PICC line right before I went home so I could do an IV antibiotic to make sure any lingering germs in my sinuses were wiped out.

I was NOT HAPPY.  From about the time I turned 15 or so, I developed this fear of and antagonistic attitude toward my doctors because I was so terrified one day they would say I had to go into the hospital.  Even though I was a healthy kid, they started mentioning it more and more as an option someday, probably to get me used to the idea that one day I'd need it.  I despised their cavalier attitudes toward the idea that CF patients often just needed a "little tune up."  The way they tried to convince me it was no big deal.  Therefore, after my sinus surgery, I was SO ANGRY that I had to get a PICC line.  I felt like I'd been duped somehow.  Those doctors...they finally figured out a way to force me to do IV antibiotics in the end.  They're probably having some kind of victory party back at the office...  I pouted.  I cried.  When at last I conceded that this was going to happen no matter what, I begged to be completely put under so I wouldn't know when they put it in.  Of course, they said no to that.  In the end, I got the PICC line, of course, and was sent home on 10 days of IV antibiotics (oooooh, the good old days of short-lived PICC lines!).  The home nurse was waiting for us when we got home.  To my eternal shame, I know I must have been snotty to her, because I resented everything about what she stood for, haha.  (Poor lady - she held her own though, because I remember her being  "rude" to me - probably just in response to how I was acting toward her!).  I was so upset the entire 10 days.  I couldn't look at the PICC line - seeing a tube coming out of my arm was so medical, I just couldn't handle it.  I didn't want to touch it, or feel it, or look at it.  I didn't want to leave the house until finally a group of my friends forced me to go to Starbucks with them.  Their support and nonchalance toward the whole thing was one of the best things that could have happened to me.

I share this somewhat-depressing (but also hopefully somewhat-humorous - teenagers really can be childish and completely unreasonable!!) story just to give perspective on what it's like for kids and teenagers learning to deal with not-fun health issues.  The good news is:  I survived.  I went on to college and didn't need any more PICC lines for over 7 years.  If you're going through your first admission or first round of IV antibiotics, I know it sucks, and I know it's scary, and I know you might be depressed - but you'll be alright.  Really.  Truly.

After the sinus surgery and subsequent IVs, I went on to college and stayed relatively healthy for the most part.  My lung function did start to drop toward the end, and I will forever blame myself for letting that happen because I was not at all compliant with my therapies like I should have been.  Back then, though, a round of oral antibiotics perked me up almost instantly and made me feel like I could leap over mountains.

In my early twenties, right after college, I fell into a vicious cycle of needing oral antibiotics.  Back then I only cultured MRSA and no pseudomonas, which wasn't ideal, but luckily that MRSA was super sensitive to all the typical treatments.  Therefore, I would start to feel really bad, then take a round of bactrim or doxycycline, and feel better within 24 hours of starting.  When you get to a point in life when you feel bad a large percentage of the time, and a little antibiotic pill can make you feel almost instantly better, you get addicted to the "feeling better."  I knew the dangers of developing resistance, but I decided I didn't care.

Oftentimes at first, I would put off calling the doctor when I felt bad because of that ridiculous view I had that they were somehow my "enemies" (yes, this impression continued into adulthood) who wanted nothing more than for me to be sick enough to be admitted to the hospital.  Anytime I went to clinic, it felt like it was a game of either tricking them into thinking I didn't really feel that bad, or bargaining to do my Vest more and take my vitamins if they would just give me another round of oral antibiotics.  It was stupid, but the thought of being admitted to the hospital for a CF exacerbation was more than my small, silly mind could handle.  Admission was brought up a few times, but I responded so well to the oral antibiotics and I was so deadset on avoiding the hospital, I always just ended up on orals again. Eventually, I was on a cycle of one month on antibiotics, one or two months off, then one month on, over and over again.  Also eventually, pseudomonas strains showed up and slowly fought off the MRSA so that now all I ever culture is pseudomonas.  Unfortunately, my sensitivities to oral antibiotics to fight the pseudomonas were not as strong.

Then November 2011 happened.  I was 25, and still super resistant to the idea of being admitted to the hospital.  But toward the end of my first semester of law school, I fell into a nasty pit of health.  The oral antibiotics weren't pulling me up like they used to, and I felt really, REALLY awful.  At long last, I tearfully called my CF clinic right before my final exams and told them I thought I needed to be admitted to the hospital.

And so, that was my first true CF admission since I was 2 - not a bad run, but it still killed me a little that I needed to be there.  It felt like the "beginning of the end."  I know that's very dramatic sounding, but if you or your child starts to feel that way when a hospital admission becomes necessary, know that it's a normal feeling of grief that you just have to work through.  After two weeks in the hospital on IVs, I felt amazing.  I was ready to take the world by storm.  I remember thinking Is this what "normal" people feel like ALL THE TIME??  This is amazing!  Unfortunately, that peak was short-lived and about a month later I started feeling bad again - this time the infection came on with a vengeance, and I ended up back in the hospital just two short months after being discharged and feeling "healed."  That was a difficult admission, too, because I felt like I was going to have to start accepting that this was my life now - hospital admissions every few months, like so many other adult CF patients.  I struggled.  But, after 10 days and another sinus surgery, I was feeling on the up-and-up again.  I went home feeling strong, and stayed strong for over a year - I didn't even need any oral antibiotics!  It turned out to be a great year, and also the year I dated and got engaged to my husband.

Since that time, I've had a number of PICC lines and hospital admissions.  Thankfully I've also learned to view my CF doctors as being for me and not against me - they listen to me, and want to help me feel better, and together we work together to come up with a game plan to get me as healthy as can be.

Unfortunately, my bacteria is now resistant to almost all antibiotics, including all the oral ones, so anytime I have a serious flare-up I have to do IV antibiotics.  It can be scary to think about at times, but honestly, you just have to take life as it comes, love the life you've been given, and keep fighting.  If the thought of reaching this point of your disease scares you, let me assure you there is still lots of joy to be found and life to be lived - you just have to work a little harder on your health and accept it as it comes.  Since that admission in 2011, sometimes I've gone over a year without needing IVs, and sometimes I've gone 2+ years between hospital visits.  Other times I've been in the hospital or on IVs 3-4 times a year.  But I've also lived a lot of life in those years.  You really just never know what curveballs this disease will throw you, but don't forget there is also joy.  And hope.  Lots and lots of hope.

CF Awareness Month Day 3 - Medications $$$

Did you know that having a life-threatening chronic illness can be expensive?  Like, blow-your-mind expensive?  It can, and for me, it is.

My current medication schedule each and every day, day-in and day-out is as follows:

Morning: (Approximately 1.5 hours if I don't get lazy between treatments)

Levalbuterol Treatment

Hypertonic Saline 3.5%

Pulmozyme

Inhaled Antibiotic (rotate between TOBI and colistin)

Vest treatment

2 puffs Dulera Inhaler

1 puff Flovent Inhaler

Sinus Rinse packet

Flonase

Multivitamin

Vitamin D

Vitamin E (gamma)

Vitamin K2

Krill Oil

Zyrtec

Probiotic

Emergen-C packet

Mid-day: (Approx. 15-20 minutes)

Levalbuterol Treatment

2 puffs Flovent inhaler

Evening: (Approx. 1-1.5 hours)

Levalbuterol Treatment

Hypertonic Saline 3.5%

Inhaled Antibiotic

Vest Treatment

2 puffs Dulera Inhaler

1 puff Flovent Inhaler

Sinus Rinse packet

Flonase

Multivitamin

Vitamin A

Vitamin D

Vitamin E (alpha)

Vitamin K Complete

Singulair

Zithromax (3 days a week)

Also:

1-4 Zenpep enzyme capsules every time I eat or drink something with fat

Occasional oral antibiotics or prednisone, as needed
Monthly Xolair injections for allergy-induced asthma

That's a lot of pills, inhaled medications, and equipment needed to keep me alive and functioning each day!  If you take away even one of these items, I start to feel the difference - sometimes it is an immediate effect (e.g., the levalbuterol or the enzymes), and sometimes it's a more gradual decline (e.g., the vitamins or sinus rinses), but each and every one of those items is essential for keeping me healthy and feeling the best I can.

And medicines cost money.  Some of them cost A LOT of money.  I don't know the exact number, but I know all those basic medicines cost a couple thousand dollars a month.  Not to mention the price of routine doctor visits, tests, hospital admissions, and occasional IV antibiotics throughout the year.  Thankfully, most of the costs are kept at a reasonable level for me due to insurance coverage.  However, this tether to my medications and treatments has resulted in me being a person whose entire life has been largely dictated by the availability of health insurance.  

Ahem...and now:  Health Insurance - A History

When I was a child, the burden was on my parents to make sure at least one of them held a job with good health insurance coverage so that I never had to go without medicines I needed.  When I became an adult, the burden shifted to me.  When I graduated college at the age of 22, I didn't have a job lined up and our U.S. healthcare system was a mess.  The minute I was no longer enrolled in school, I would be dropped from my dad's insurance coverage.  And because I had a pre-existing condition, I didn't even qualify for an individual plan; like, even if I was willing to pay some outrageous amount for monthly premiums, it wasn't an option.  I had no idea what I wanted to do with my life at that time (few 22 year olds do).  The only thing I really wanted to do was move to another country to teach English, but that was a no-go because it wouldn't provide health insurance coverage, and, as you can see, I have a slew of medicines needed to keep me alive each month.  I didn't have any job leads, and didn't want to go thousands of dollars into debt on a grad school program I wasn't really interested in; therefore, the option I was left with was to move back in with my parents, work part-time at a retail store, and use that money to attend classes at the local community college while I figured out my life.  I'd already earned my bachelor's degree and didn't need anymore classes, but I had to stay enrolled and earn good enough grades that it wouldn't negatively affect my overall GPA if/when I ever decided to pursue law school - all in the name of keeping access to my medicines.  It was a frustrating year and a half.

Thankfully, right as I was getting settled into my first full-time job as a paralegal at a small law firm in late 2009, the Obama administration changed the law so that children could stay on their parent's health insurance until their 26th birthday no matter what.  This provided a HUGE relief for the next two and a half years.  When my 26th birthday finally rolled around, I was then eligible for COBRA coverage under the same good health plan for 36 months.  This was good because by that time, I was knee-deep in law school and couldn't work full-time on my own anymore.  The COBRA coverage was a big chunk of change each month, but it was nothing compared to what the out-of-pocket cost of all my medications and other healthcare expenses would be WITHOUT insurance (the pre-existing condition issue still applied at this point), so that's the route I went.  During that time, I got married, but my husband's work didn't offer stellar insurance, so we stuck with the COBRA coverage.

My COBRA coverage would have expired in 2015 - right when I was finishing law school and taking the bar and not yet employed.  This also happened to be the second year the healthcare marketplace was up and operational, so thankfully most of the initial bugs had been worked out; the more I looked into the possibility, the more I realized I was basically exactly the kind of person the marketplace was made for - so I jumped on and had what felt like an out-of-body-health-insurance-purchasing-experience.  I literally answered two questions, and a very long list of healthcare plan options popped up - and I could choose ANY of them.  My pre-existing condition wasn't a factor in any way, shape, or form.  I crunched some numbers, picked a plan, pressed "submit", and voila.  Affordable health insurance coverage.  It was amazing.

Toward the end of 2015, I started working with a local nonprofit who provided great insurance for me and my husband, so that was awesome.   When I knew I'd be leaving that job earlier this year, I got back on the marketplace, hoping for the same experience and options I'd had in 2015.  Alas, a lot had changed in two years, and none of the plans offered on the marketplace were viable options because literally NONE of the CF providers in my state were in-network with any of the offered plans. 😔 Additionally, I couldn't find any health insurance company that offered individual plans any different than what was offered on the marketplace.  And so, it was back to COBRA coverage.  This time around, it is even more expensive than before - ridiculously so, in fact, but I'm grateful it's still an option.

Given the current regression of our healthcare system (which basically puts myself and others like me in the same helpless position we were in ten years ago), health insurance coverage has once again become an anxiety to add to my list of health concerns.  I'm not trying to get political, and I certainly don't personally know how to fix the mess that is our healthcare system, but I CAN tell you that allowing insurance companies to bring the term "pre-existing condition" back into their vocabulary is a mistake that marginalizes and punishes those in our society who need healthcare the most.  Right now I'm not sure what our next step will be once the COBRA coverage ends next year, but the Lord has provided an option every step of the way up to this point, and I've no doubt something will work out all in good time yet again. 😊

That was kind of a long rant.  But, bottom-line, medical care with CF is expensive, and healthcare insurance in essential.  People without adequate insurance coverage often have to pick and choose which medicines they can afford, and go without others that they desperately need.  Please keep us and others like us in mind next time you have a healthcare reform debate!

In case you haven't seen it yet, check out this Jimmy Kimmel video where he speaks about his recent experience with a sick child and the healthcare system.  I love what he says at the end about all Americans, no matter their politics, surely being able to agree that no parent should ever have to make the decision about whether they can afford to keep their child alive.  Give it a watch!

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!