CF Awareness Month- In Memorium

This has to be the hardest topic of them all. I have lost some cysters over the years and it so heartbreaking to lose someone to your same disease and at such a young age. I realized recently that at 33 I have outlived most of my closest cysters. At 33!! I am going to speak for all 33 year olds and say we are way too young to be outliving our friends!

When I started blogging I met a friend through my blog comments. She was about my age, worked in a school, and was married and had lung function just a little higher than mine. She found my blog because she wanted to start a family. We hit it off and became Facebook friends and stayed in touch via e-mail.

What happened over the next few years is something I will never understand and I will never live without feeling some guilt as to how life treated us so differently. I had a baby, she was having trouble conceiving. After a few years of trying she decided to try for surrogacy for multiple reasons. I was ecstatic for her because she would finally fulfill her dreams of motherhood.

Then by some weird twist of fate we both started to decline. We both started losing lung function and having problems getting a grip on CF. We slipped down together, and found comfort in clinging to hope with one another. We found comfort in having a friend that could understand how this horrendous disease can pull the carpet out from under you and you can fall at such a dizzying speed that nothing seems to ever make sense.

And then we watched our numbers fall to the 40s, 30s, 20s, both desperately trying anything to get our numbers back, both of us working our asses off to do anything and everything our doctors asked and then more. We made a bet at who would get back to 50% again and we teased one another about who would win. We talked about the upcoming medications in the pipeline and how close Orkambi was. We told one another to hang on until Orkambi become available. And then we both were going to the hospital again, but my room wasn't ready and I kept getting delayed, for days. Finally the phone rang to say a room was ready and she was the first person I told. But she didn't respond.

She would never respond again.

I still don't know why I was given a baby and she was not. She deserved one just as much as I did.

I still don't know why either of us had to decline so rapidly.

I still don't why I was given a second chance and she did not. She deserved it just as much as I did.

I still don't know why I was able to try Orkambi and she was gone before ever getting a chance.

I still cry when I think about her and how things ended up.

I still call on her for strength when my CF gets too hard because I know wherever she is, she understands.

CF Awareness Month - Videos and CFF

---AND---

 

One of my all time favorite CF videos can be found here

CF Awareness Month - What Is CF

I don't want to re-invent the wheel here so if you don't already know check it out..

https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/

CF Awareness Blog- Free Day

 

 

For free topic day I am going to give an update on my health lately. This winter has been so rough on my poor body! It started at Christmas when I got a bladder infection and soon after contracted noro-virus. Prior to that I was doing really well and staying very healthy. It seems that when I get hit by something really bad (oh you know throwing up non-stop) my immune system takes a huge hit and seems to disappear. I also lost weight because I couldn't keep food down for so many days and I think the weight loss really hit my immune system as well.

 

 

So the past several months have consisted of one cold after another, bleeding into one another so that I can hardly remember what it feels like to feel well! I was sick the whole first week of May and now I am sick again! That's less than two weeks! And we all know a CFer doesn't just get a cold and bounce back to 100% so I feel like I haven't been 100% in months now. Thankfully, my lung function has been holding steady and I don't even have words for how grateful I am for my lung stability. This winter could have been so much worse if my lungs weren't holding strong.

 

 

I am so very sick and tired of being sick and tired. I thought by May I would be over this horrific cycle of sickness, but it seems the viruses are still circulating in full force. I just want ONE month of no cold, no cough, and actually having a voice (I lose my voice every time I get a cold) and I just want to have energy again! Hurry up, summer!! With the end of the school year wrapping up (which means I will be at preschool most days now until the end of the year) and an upcoming wedding and a visit to a best friend I just can't afford to be sick anymore. I also wonder if all these activities will make me sick AGAIN! Ugh, despite taking all my vitamins and supplements and finally eating fresh fruit (boysenberries, blueberries and strawberries) from my garden I just can't get back in my healthy groove!

CF Awareness Month - Smoking

I am not sure what to say about this topic. I feel like you have a right to choose what you do with your life. We all make life choices that aren't always wise. In high school my two best friends and I would purchase a pint of Ben and Jerry's ice cream each and eat the entire thing in one sitting. Was that a smart healthy choice? Nope. Did it have long term consequences? Thankfully, no. Am I going to judge your lifestyle habits even if I personally don't agree with them? No.

What I do get mad about is when people's lifestyle choices directly harm others. Like don't smoke with children around. I also get pissed when people don't obey the "no smoking within 20 feet of a building" and smoke wherever they want. In that case, your lifestyle choice is harming other people's lives and I am not cool with that.

The other part that gets a bit murky is when we talk about transplant. I don't think anyone deserves to be sick enough to know what needing a transplant feels like. And for people who do get that sick, I feel they all deserve a set of healthy lungs to run and jump and be human again. It does get a bit weird when people who were born sick (whether CF, pulmonary hypertension, or any other lung disease) has to complete with people that are sick due to past poor life style choices for new lungs. The biased part of me feels like those of us that are simply "unlucky" should have priority, but that isn't the way life works.

CF Awareness Blog- Hygiene

I definitely don't fall into the OCD category. I am not really a germaphobe and I do lots of things other people with CF avoid due to concerns about bacteria: swim in rivers, lakes, sit in hot tubs, garden (I do wear a mask though), and volunteer at my daughter's preschool. I can't spend my life wrapped in a bubble because we all end up the same way... dead. I want to enjoy my time here.

I do keep a bottle of hand sanitizer in my purse and use it pretty regularly during cold/flu season so that might be my CF-OCD showing. I also tell people not to hang out with me when they are sick and move away from people who are clearly sick and coughing at the grocery store or library. I guess those might be weird behaviors for average people, but for the most part I don't think I am overly obsessed with avoiding germs.

CF Awareness Month Blog - Savior

I am interpreting this as a person who has been life saving rather than in a religious view (not sure what the original person meant by this so I am opening it up to my own interpretation).

Most of my entire life I kept CF a huge secret from everyone I knew. I kept it such a huge secret that I didn't even tell a few roommates. How crazy is that? I would do my treatments when they were in class or before they woke up. I seriously look back and can't figure out how I managed to pull that off! When I did have to tell roommates or coworkers, usually because I needed a PICC, I gave as few details as possible. CF was always my dirty little secret.

When I met my now husband I wanted him to know what he was getting into so I was extremely open about my CF. He was really the first person I let know all of me and my disease. As we grew closer he became the first person that took some of the burden I had from CF and helped me carry that burden. He not only was supportive in my health, was willing to do jobs very few people would (like clean my PICC site daily when I had such a nasty reaction I had hard even looking at it), he was also a huge emotional support.

The emotional and physical toll CF has on a person, especially as they decline, can be enormous and without the support of my husband I am not sure how I would get through. I am so grateful for his love and support!

CF Awareness Month - Mess Ups

The mess up that makes me the most annoyed got it's own blog post here. I found it infuriating because it was something that wouldn't have happened at all if the resident (ugh, don't get me starts on how much I dislike residents!) didn't take two seconds to double check what he was doing. Luckily, outside of some (a ton) of unnecessary stress there was no real harm done.

 

 

The other most horrifying mess up happened at one of my most recent hospital stays. Before I share this story I understand my port can be complicated. I also know I should learn to access my own because of this, but for some reason I can't get myself to that point right now. I am allergic to chloreprep so I need nurses to use betadine. The problem with betadine is that once the needle has been accessed the leftover betadine needs to be removes with alcohol or I will react to the betadine. If that wasn't bad enough I also need a very specific set up for my port coverage that I will not get into because it is complicated and boring. Anyway, the nurse in the hospital seemed a little nervous about accessing my port, but I assumed it was because I had so many port "rules."

 

 

Unfortunately, that assumption was very wrong. First, the nurse set everything up on a non-sterile surface, my dinner tray! I had to tell him to throw everything away and do it again on a sterile surface. I should have told him to get someone else, but I dumbly didn't. I then had to tell him at another point to change his gloves because he touched a non sterile item during the sterile part of the port change. Unfortunately, this is not the only time I had to ask a nurse to change gloves due to not keeping with sterile protocol. I also had a PICC nurse that I had to politely ask to change gloves for similar reasons!

 

 

The part of this that scares me the most is that most of the time I am feeling well enough in the hospital to watch my nurses. I ask a lot of questions and confirm things are done the way they are supposed to be done. My fear is if I am in the hospital and I am not in a position that I can advocate for myself I am at the mercy of the nurses. Now, 99% of nurses are amazing at their job, but one slip up with a not so great nurse can have fatal consequences.

 

CF Awareness Month - Oops moments and Fatigue

May is CF awareness month and many of the bloggers I regularly follow are doing posts dedicated to bringing more awareness. A fellow blogger, Breath. Love. Justice, has been doing the 31 Day of May blog challenge. I had participated in this a few years ago and after reading her posts I went back to check out mine. Apparently, I made it through the first ten days and then randomly did day 14 before falling off. It was interesting for me to see how much my perspective and life has changed in the past 4 years. I also felt like I wanted to join in and finish out my 31 days. I can't guarantee that I will do the last 17 days, but here is my attempt!

Ahhh, fatigue and CF! I am not sure many people can understand the exhaustion that comes with a bad respiratory infection. Bodies of CF patients are already working harder which means we already have lower energy levels. Now add a really bad infection and it is a recipe for disaster!

The absolute worse oops moment due to CF fatigue happened when Kaylee was a toddler. I was home alone with her and I was so unbelievably sick. I was on IVs, but I was so fatigued that within two hours of waking I would be so exhausted that I wondered how I would survive being awake until nap time. It felt like torture trying got keep my eyes open, let alone function as a mother. Looking back I am almost positive I was so sick I needed oxygen at night, but since I was doing home care nobody knew. I was waking up with extreme headaches and felt as if I didn't sleep at all. I assumed it was just part of being sick, but now that I know the symptoms of low O2 at night, I am sure that was a huge part of my feeling like the walking dead.

Anyway, Kaylee was playing with a puzzle (or something quiet like that) on the living room floor. All I could manage to do at the moment was lay on the couch and watch her play. The next thing I knew I as laying on the couch opening my eyes from a spontaneous nap!! I had no idea I had fallen asleep! I also didn't know how long I was asleep!! I am sure it wasn't long because Kaylee was still sitting in the same spot. I felt like I had failed at the most important job in the world, keeping an eye on my own child!

Full disclosure: There were times when I would be really sick that I would put Kaylee in her crib (that was next to our bed) with toys so I could get a quick nap and I knew she would be safe. This however was the one and only time I just fell asleep without even realizing it!

CF Awareness Month Blog- CF & Kids

Kaylee is only starting to talk and has a limited vocabulary, BUT she makes it clear that CF is already a big part of her life. I have 3 cute stories to share about CF and Kaylee.

1. Whenever she sees my Albuterol puffer she holds it up to my mouth and then blows. I don't think she knows that I actually breath IN rather than blow out. It really is beyond cute, but kinda sad that she already knows what a puffer is.
2. She thinks my nebs are the coolest thing around. Whenever I do treatments she wants to pull the neb from my mouth and suck on it too. I gave her a neb that only she can use and whenever she wants my neb I tell her to go get hers. She keeps it with all her toys and will walk over grab it and chew, suck, or make noises into her neb while I do my treatments. It is pretty darn cute. After having a past that CF was something we didn't talk about I am trying to normalize it and make sure I am open and available to Kaylee if she ever has questions about my treatments or CF.
3. She performed CPT on me which I talk about here!

CF Awareness Month Blog - Pros and Cons

The pros and cons of CF. Well, the list of cons is so long I could write a book. Also, I think the cons of having a progressive fatal disease that requires hours upon hours of breathing treatments and medications to stay well are kinda obvious. The pros on the other hard are a little harder to find.

I think the biggest pro for me personally is that CF has opened my eyes to living a healthy lifestyle. Because so much of my life is ruled by meds, treatments, and pills I have looked closely at my day to day life and how I can keep it as pure and natural as possible. This includes the food I eat, the products I use to clean my house, the products I put on my skin, what I put on my daughter's skin, and how I wash my clothes. I want to expose my body to as few toxins as possible and have tried my best (and continually trying to improve) to make our living environment as clean (not in the bleached to death sense of the word) and as healthy as possible. Despite having CF I feel I have a very healthy lifestyle that is full of fresh, healthy food from the earth, a home environment free from harsh chemicals and toxins (or as free as possible considering the society we live in), and full of fresh air and exercise. I am not sure I would care as much about these things if I did not have CF because I am not sure how much I would even think about my health. I also love knowing that my daughter is growing up in this environment and in this life style as I know it will benefit her.

CF Awareness Month Blog - Milestones & Challenges

**Of course my healthy pregnancy/delivery are my biggest accomplishments, but considering my whole blog is about pregnancy/motherhood I thought I would write about a different CF accomplishment.**

When my husband and I moved in together (before we were married) I knew we would want children in the near future. I was 25 and knew that I wanted to start my family around 30 or before. I also knew I needed my health to be in the best place possible. My lung function was sitting around 48% and my doctor wanted my lung function to be at least 50% before getting pregnant. I bought a huge table calendar and put it on my desk in my room. I charted everything. I charted the color and viscosity of my sputum, how I felt, if I was having an asthmatic day, allergies, hunger level, and when I thought I was ovulating. I also recorded everything I was doing for CF: Vest, Albuterol, Pulmozyme, Cayston, Flutter, swimming, yoga, walking, etc. I wanted to be held accountable for my health and I also wanted to know exactly when my allergies hit (rather than "in the spring") and I wanted to see patterns in my health so I could plan my pregnancy accordingly. I also wanted to know when I ovulated so I could start keeping track of my cycles.

I put every ounce of energy I had into getting as healthy as possible. I wanted to be mentally, emotionally, and physically ready for a child. I felt like my life consisted of working, treatments, and exercise. By the time I was ready to conceive my lung function was at an all time high of 58%!! This was higher than I had ever anticipated my lung function to be. I still remember blowing my 58% and was floored. I never thought I would ever see those numbers again. I would say gaining back 10% lung function was my biggest CF accomplishment to date. Just about 11 months after giving birth I am working on getting back to 58%, but living for treatments and exercise is no longer possible. I am still trying to get exercise 5 days a week and never miss a treatment, but caring for CF is drastically different after becoming a mommy. I am hoping in this next year I can see those numbers again.

CF Awareness Month Blog - Non Compliance

Unfortunately, like many cysters and fibros I went through a period on noncompliance. After I was diagnosed I was required to do the Flutter once a day. I also had to take enzymes. I often fought with my parents about the Flutter because I never felt sick (heck I lived 14 years without ANY treatment so what was one missed treatment going to do?) By high school I was really good about doing my Flutter because I hated coughing in front of my peers, but during this time my doctor decided to add more to my daily routine. I got the Vest around this time and was supposed to start Tobi and Pulmozyme. I fought my nebs a lot. I hated the thought of this disease taking over my free time. 

My first year of college was the worst. I was living in the dorms and there was always something going on. No matter what time of day or night there were always things to do, people to see, places to go.  I would often find myself rolling into bed in the early morning hours when it was much too late to do treatments. I was tired and I would tell myself I would double up Vest time the next day, but somehow that extra Vest time never seemed to happen. Over the next few years I learned how to do enough of my treatments to keep myself from getting too sick and having to go to the doctor, but not enough to actually be a good compliant cyster. I think the fact I was so active (I was on the water polo team, took dance classes, and went to the gym) was the reason I got through those years without doing much as far as treatments.

Around the time I met my husband I realized that I did want a family, a future, kids. I decided I needed to step up my treatment regiment. I started doing all my treatments (although it was discovered in college I was allergic to Tobi so I only had to do Albuterol, Pulmozyme, Vest and my Flutter). I wish I had started being compliant so much earlier. I wish in junior high I could have realized 30 minutes twice a day was worth my health and well being. I wish I would have taken the time on college to shut my dorm door and taken care of myself. I can't change the past, but I can choose how to live now and in the future. My health is on the top of my priority list and it will be there for the rest of my life.

CF Awareness Month Blog - Home Life

I am not in school anymore and since I had a late diagnosis I never had to deal with CF and elementary school. During junior high and high school I was really healthy and CF did not play a role in school at all for me. We never told any of my schools that I needed enzymes and I just carried them in my pocket (naughty naughty!) so CF really wasn't part of my school life at all. I decided to alter this topic (Can I do that?!?) and do a day in the life of a CF mom since CF plays a big role in my life as a mommy.
The schedule of a CF mommy to an almost 11 month old:

6:00am

• Wake up to a squeezable little face inches from mine cheerfully chanting, "hi!" until I open my eyes. 
• I often lay around in bed for 20 minutes while Kaylee crawls all over me (I hate waking up).
• Get Kaylee and myself dressed and ready for the day. 
• I do Albuterol because I just feel so much better when my lungs are open. Kaylee plays on the floor in the living room with me while I neb.

7:00am

• Make breakfast for both of us and we sit together to eat. Kaylee takes forever to eat (we do Baby Led Weaning) so I often sit and chit chat with her while she finishes.
• Clean up breakfast
• We go back to the living room where I do the rest of my treatments (Vest, HTS, Cayston) while she plays.

8:30am

• Sterilize nebs
• Play time with Kaylee- usually we listen to music (she knows how to turn on the cd player and she is pretty obsessed with dancing), puzzles, blocks, or she practices walking.

9:00am

• I use my juicer around this time and Kaylee "helps" me get the veggies out of the fridge. (In other words I open the fridge and she pulls all the condiments out of the door and scatters them all over the floor. It's actually easier to clean and prep while she plays with the bottle of mustard so I don't mind).
• I let Kaylee take some sips of juice (her favorite is kale, spinach, carrot, apple juice) and then I drink the rest and clean up.

9:30am

• Kaylee and I play in the garden. I weed, water, and tend to my plants while she stomps around in the mud, pinching dry clumps of soil with her fingers (she LOVES this), pulling leaves off my precious veggie plants (eek!), and running her fingers through the soil. We both love spending time in the garden and I think she would spend all day out there is she could.

10:30am

• Around this time Kaylee goes down for a nap. Depending on how I am feeling I nap too or I do housework (laundry, hanging clothes on the line, washing floors, the usual). I also do my next set of treatments- Albuterol, Pulmozyme, Cayston. If I am lucky I have 30 minutes or so of down time which is usually when I blog.

1:00pm

• Lunch time for both of us.

1:40pm

• After lunch is a little less structured. We either have go to a playgroup get together, go to music time at the library, play in the blow up pool, take a walk, run errands, etc

4:30pm 

• I start making dinner.
• We all eat together (unless my hubby is at work)
• Clean up dinner

6:00pm

• I start treatments- Albuterol and HTS (if my hubby is home he hangs out with K while I do treatments, once a week my dad comes to hang out with her or she plays on the floor near me.
• Quiet play in Kaylee's room.

7:00pm

• Start bedtime routine for Kaylee
• Put Kaylee to bed

7:45pm

• Finish treatments 
• Relax and go to bed!

*Of course this is approximate cause anyone who has ever been around a baby knows they aren't that great at time management!

**I also swim several times a week so those days look slightly different too.

CF Awareness Month Blog- Diet

Diet. This is an interesting and often confusing part of CF. We need calories and lots and lots of them. What is the easiest way to get lots of calories? Junk food- ice cream, candy, chips. The problem is that as a CF we desperately need a diet that is rich in nutrients, vitamins, antioxidants- none of which can be found in junk food. So the dilemma is finding healthy food that will provide enough calories to sustain our bodies that need so very much.

As someone who struggles with weight gain and the idea of eating foods that are highly processed I am constantly working on finding a balance. I got my degree in nutrition in 2006 (eek, that ages me!) and have been careful to eat from the earth rather than a package since then (although we ate really healthy growing up too). Luckily, my husband and daughter are both great eaters and so we all eat a lot of fruits, vegetables, whole grains, nuts, and seeds. I try to incorporate healthy high fat foods as often as possible such as avocado and nuts, but I don't obsess about getting enough fat/calories since I think the secret to a good healthy diet is enjoying food. If I feel like a salad, I eat a salad. If I feel like eating an apple void of peanut butter or cheese (my dietitian always says to slather with cheese, peanut butter, or butter) I do it.

I currently (and have during different times in the past) am having trouble maintaining weight with my diet alone so I drink Ensure Plus to provide the extra calories I need. I think being sick for a few months and nursing an 11 month old both contributed to my need of an obscene amount of calories. I just can't possibly eat enough calories in the day and enjoy healthy foods without a supplement at this point in my life.

Okay, before you role your eyes at my ultra healthy diet I will be the first to admit that I am not perfect. Of course I eat crap out of a package sometimes. But my day to day life I try to eat as healthy as possible since I really believe that although highly processed foods may give us the fat content we need, it will ultimately negatively effect our bodies in a way that will not be conducive to health which is the whole point we try to gain weight anyway..

I also just started juicing which I have fallen in love with!

CF Awareness Month Blog- Illness and Admissions

I can't really remember my first PICC line too well. I think I got my first PICC a few years after I was diagnosed. I remember being completely terrified of the whole process. The nurses were getting everything set up and suddenly I started crying because I was so afraid of what was about to happen. One of the PICC nurses looked up really surprised. She asked me how many PICCs I had in the past and when I told her that this was my first she was really shocked. She assumed that having CF that I was used to the process. She was really sweet to me, but unfortunately she had a lot of trouble getting a PICC in. I started crying again by the third attempt. She felt so bad she made a nurse pop me some popcorn so I could have a treat when it was all done. I remember being afraid, but mostly I remember how kind the nurses were and how well they took care of me despite my uncooperative veins.

Back at home I waited for the home nurse. Again, I was terrified. I had no idea what to expect. When the home nurse arrived she first went to change my PICC dressing (this was before I became allergic to all things with adhesive). I refused to look at my insertion site and I remember feeling woozy after she removed the dressing. The whole idea of a tube coming out of my arm made me feel ill. At the time I would close my eyes when I got my blood drawn so a PICC was something I thought I would never be able to look at. (Now I like watching my blood draws and have absolutely no problem looking at my insertion site). When the nurse came in with my meds I saw lots and lots of large syringes with HUGE needles. I internally panicked because I assumed I would be giving myself injections with those larger than life needles. Turns out, the needles were used for mixing the antibiotics and did not need to pierce my skin.

The last thing I remember was feeling pretty depressed during those 3 weeks. I didn't understand how I went from being normal (I had a late diagnosis) to being hooked up to IV meds. I felt as if I went from being healthy to very very ill overnight (why else would you need IV antibiotics unless you were extremely ill? or so I thought at the time). I started to feel the weight of this still new disease and I had to come to terms with my new life.

CF Awareness Month Blog- Medications

Here is my daily CF schedule:

Morning:

• Albuterol (neb)
• Hypertonic Saline 7% (neb)
• Pulmozyme (neb)
• Cayston (neb every other month)
• Advair
• ADEK
• Singulair

Afternoon

• Albuterol (neb)
• Cayston (neb every other month)

Evening

• Albuterol (neb)
• Hypertonic Saline 7% (neb)
• Cayston (neb every other month)
• Advair

*Swim 4 days/week, Vest everyday, 5 Zenpep with meals

Luckily, I have insurance and it covers most of my medication costs. Without insurance I absolutely would not be able to survive as I would never be able to afford my medications. 

CF Awareness Month Blog- The First Year- The Worst Year

The first year after diagnosis was a confusing time in my life. I went from being a perfectly normal healthy person with a cough (or so I thought) to having a chronic, progressive illness. I went from being exactly like my peers and siblings to needing to do physio once a day and take enzymes (Oh, how I miss those days. I had no idea how easy my CF was to take care of at the time). I went from seeing the doctor once a year to going every 3 months for hours upon hours. I now had a dietitian, a respiratory therapist, a social worker all in addition my pediatrician and CF doctor. It was all a little overwhelming!

I had a lot of trouble doing my treatments. First, I could not stand the sight of my own mucus. I needed to use the Flutter every morning before school which was great in that I didn't cough all through first period anymore, but I hated looking at the thick mucus I coughed out of my lungs. In fact, I did my treatments in the bathroom with the lights off so I wouldn't have to look at the foul slime coming from my body. (It is funny to me now since I never think twice about my mucus and look at it closely to determine my current lung health).  I also had a hard time feeling like I really NEEDED to do them. My logic was that I lived 14 years without doing a single treatment I wouldn't die because I skipped one night. At the time I knew CF was progressive  but was blissfully unaware that it was fatal so I did not totally understand the importance of treatments.

The positives of that first year were that I coughed significantly less and I finally started growing. I had a nice growth spurt soon after starting enzymes. I was also happy to finally know why I coughed so much. I always knew something had to be wrong because nobody else I knew had a chronic cough so it was a relief to realize that we finally knew what exactly was causing my cough.

CF Awareness Month Blog- Diagnosis

I have an unusual diagnosis story in that I was diagnosed as a teenager. I always had a mysterious cough that often came at night. Nothing would stop this cough and despite seeing numerous doctors nobody could figure out exactly what was wrong. There were lots of "educated" guesses such as allergies or asthma, but nothing made my cough go away.

When I was in 7th grade my family moved across the country. When I started going to school in my new town I had to ride my bike because our small town didn't have a bus system. I had no problem biking, but once I got to first period I would start coughing. In fact, I would cough throughout the entire period to the point that I often couldn't pay attention. By second period my cough would disappear and I would be back to normal. I could not for the life of me figure out what was going on. I had physical education 4th period and was relatively athletic. I was a pretty good runner (at the time, I can barely run 5 feet now!) and made good times when running the mile, but once I finished running my cough would come back. I would continue to cough for the rest of the hour. I remember looking around me after finishing a particularly fast mile and wondering why everyone was huffing and puffing, but I was coughing like crazy!

I went to a new pediatrician who was familiar with CF. Looking at my lack of growth and hearing about this mysterious persistent cough the doctor ordered a sweat test. My mom objected at first since I was tested for CF at birth and came it came back negative. She agreed that we would do it again just to be safe. After a sweat test confirmed I had CF a blood test confirmed I had the most common CF mutation DF508. This is where my CF journey started.