So now that I have spent a good hour on blog aesthetics, I should probably actually BLOG. Admittedly, I have had a blog before, but not with purpose and it was usually reserved for emo-tastic, teenaged rants. Now, I proudly present to you my blog with a purpose, a rather big one at that: to document my journey with Cystic Fibrosis.

For those of you who are new to my world …

Scientifically speaking, Cystic Fibrosis (CF) is a genetic disease (you can’t catch it, no matter how badly you want to!) that affects the lungs and digestive system. A thick build-up of mucus in the lungs causes chronic infections and inflammation, which in turn causes severe breathing problems. In the digestive system, the pancreas is unable to release enzymes to the intestines to digest food because of the thick mucus blocking its way. This makes it difficult to both digest food and absorb nutrients.

Personally speaking, CF is a job that requires hard work, dedication and few benefits. On average, I commit 6 hrs a day to treatments. CF is also a character builder, a binding element for friends and family and so much more.

What does this translate to?

Well, in order to prevent these lovely infections and keep my lungs as clear as possible I must do physiotherapy three times a day (20-40 mins each) and inhaled antibiotics twice a day. I also take pills (artificial enzymes) to help me digest my food and lots of other pills to control things like GERD, inflammation and infection. If you shook me, I would probably rattle—not that I am suggesting this!

So that’s my real deal…

And for those of you that have been following me closely this past year, you know that it has been quite an interesting year health-wise for me. I spent 10 weeks on IV antibiotics and endured countless antibiotic changes due to allergic reactions and certain combos simply not working. It was a year of not-so-brag-worthy firsts including: my first time spending six weeks in the hospital (usually it is one week, two weeks max), first time spending 10 weeks on IVs, first time spending my birthday in the hospital and first time needing to use oxygen.

It was around the time of my 6-week stint at St. Mikes Hospital in Toronto (which I lovingly refer to as a 2 star hotel) that the decision was made to begin the assessment process at Toronto General Hospital (TGH) for a double lung transplant. To be clear, this does not mean I will be going onto the 'active' list and actually physically preparing for a transplant. Rather, it means that I will be going through all the tests to see if either:

1. It is too early for me to go on the transplant list and they will follow me closely in the future
2. I should go on the list now (unlikely) OR
3. I am not a suitable candidate for transplant (I am told this is very rare for people with Cystic Fibrosis because we are so young)

**FYI I have my fingers crossed for option 1**

Why am I doing this now?

Well for starters, the assessment process is a very long process (one week) that involves long days, lots of tests and meetings and lots of traveling. All of this requires energy that is simply not available when you are sick and all you desire to do it watch trashy television or What Not to Wear and lie in bed.

Secondly, CF is unpredictable and I am unpredictable. I have not had a ‘steady decline’ rather, I was once on IVs yearly (or more) when I was a patient at Sick Kids and I had significantly low lung function (so low that they suggested I be placed on the transplant list). However, my health improved and I have been able to go longer without IV treatments—for reasons unknown. My standing record is 3 years, but the time I am spending on IVs is becoming longer and infections are becoming more aggressive.

Thirdly, I am playing the number game. When CFers talk about their lung health they tend to use a lot of numbers: PFT (Pulmonary Function Tests—which is a machine you blow into that calculates how much air you can blow out) numbers, such as FEV1 are important indicators of lung health. FEV1 is important because it shows how much air you can blow out of your lungs in a second—this is an indicator of how much obstruction you have. For instance, someone my age and height should have an FEV1 of 2.25 L and my FEV1 is 0.87 L, so I essentially have a little more than half a working lung. That sounds much more dramatic than it is though...

So there is your CF 101 for now. Staying tuned for Day 1 of my transplant assessment (also referred to as tx)!