Once again I have abandoned you, dear blog, for better and brighter things (well, if you consider school and skiing as better and brighter). But I know you will always take me back and maybe I shouldn't take advantage of you. Maybe it's unkind and rude and slightly selfish, but I will try to be better and give you the attention you deserve. All I can do is try.

So, where were we?
January went by quick. And I'm amazed by the power of time--what a difference a year makes. Last January-February I had been in the hospital for three weeks, having chronic fevers, no appetite and nasal prongs strapped onto me 24/7. I distinctly remember Dr. C coming into my small, semi-private room to tell me that I needed to consider going for a transplant assessment. After that, I went home for a week to try home care again. But I became unstable and went back in for another three weeks. I watched winter turn to spring from my hospital room window, which overlooked a small park and St. Michael's Cathedral. 

Today things are quite the opposite. I have experienced winter turning to spring. I have walked through the park and I have enjoyed hours of downhill skiing (made it to 10 runs in one day) and I even tried out cross-country skiing! I have not required oxygen for moderate exercise (I just throw it on when I really want to push myself) and my love for food continues to grow (I'm not ashamed to admit it!). The best part: I've been infection-free for 11 months and counting. That's right folks, I have not even required one course of oral antibiotics--I used to be on those things at least every six months. Now that I have admitted that, I will knock on every piece of wood I can find in my vicinity.

What else?
 I turned 23 on January 25th--and no, I do not feel old. Rather, I feel much younger than last year!

Last year I woke up on my 22nd birthday to my IV drip and a sat monitor (measures the oxygen level in your blood). The first thing I did was pop two Tylenol in my mouth to ease my fever (I got used to doing this every four hours) and tried to force down some lovely St. Mikes cuisine. I'm not quite sure what treat I had in store that morning but I'm certain I only tried the cereal--that's usually the only decent thing on a hospital food tray. I was probably also treated to luke-warm tea, served in a plastic cup--which should actually be a crime. I shouldn't complain too much though, as the cuisine did improve as the day wore on.

My Mom, Sister and Dad arrived at the hospital with foil "Happy Birthday" balloons in tow (I actually still have one that's perfectly inflated). My favourite nurse convinced the doctors to give me a day pass to go home since it was a "special day". I was wheeled out to our car, so I didn't have to waste all my limited energy on walking. Upon arriving home, I think my favourite gift was a nice warm bath, since we couldn't shower on the ward due to infection control concerns. Yes, it is gross.

I had a nice steak dinner/lunch, but unfortunately I couldn't eat much because I had no appetite. However, it looked delicious. The day was capped off with an ice cream cake and in order to blow out the candles I removed my oxygen tank from the room because (a)- I was new at this and didn't know the risks and (b)- I was paranoid.

That was last year. This year I celebrated with my sister and friends with a night of boardgames and rock band. Sounds simple, but the simple things are always the best! Just like a warm bubble bath after a week without a shower...yes...just like that.

This year I also missed the simple things, like a birthday gift from my dog, Julie. She was with us for 16 years before she passed away in June. She was always a great shopper, but this year there was no card signed with a paw print.

And that is how time changes you: it ages you, takes spirits aways and introduces new ones, reshapes your appreciation, molds your perspective, builds or demolishes relationships and it heals you. And it definitely goes by way too quick.

The drop in mercury and colouring leaves signal that fall has arrived. And my favourite thing about the fall is eating all the yummy fall foods... including the best feast of all: Thanksgiving dinner.

Part of my family has rounded up at our chalet in Collingwood and as I type this our 19 lb Turkey is being prepared for a day of baking--and temptation. I will soon go pick our carrots out of our garden--the last harvest. I hope they turned out alright!

Before I do though, I thought I should mentioned what I am thankful for, since this--besides stuffing your face--is part of the whole point of this extended weekend.

No particular order:

• Fam + Friends
• Delicious food
• MSN, blogger, FB and other forms of internet communication
• Sunny crisp fall days
• Holidays to sunny, warmer places when one cannot handle 'crisp' days anymore
• Bonfires
  
• A warm cup of tea
• A warm cup of tea with chocolate
• Roller coasters that make you scream like a terrified infant being torn from their mother's grasp (specifically)
  
• People that help you out when you least expect it
  
• Humor
• Pajama days 
• Good movies you want to watch over and over again
  
• Being off of oxygen for 7 months! woo! (Still use for exercise but that's no biggie)
• Good-looking celebs to gush over
• Dr. Horrible
• Crantinis
• Good books you can't put down
  
• Wii
• Nearly being done my time at GH
• Purell 

Happy Thanksgiving Everyone!

MUGA, GERD, and PFTs
All are written with such ease
But if their meaning you want to know
Then to GOOGLE you must go.

Love Gramps

If you know someone with CF you are guaranteed to experience the potentially awkward situation of being rudely interrupted by a coughing spasm. AKA a string of coughing that does not seem to come to an end, effectively turning one’s face a shade of colours ranging from red to purple, robbing them of air and the ability to speak. Sometimes they last a few seconds, usually they are a few minutes, sometimes they happen rarely and other times they are a common reoccurrence. In any case, they are sometimes scary to an outsider, but usually the person having a coughing spasm is simply annoyed—especially when they occur mid-conversation (don’t they always seem to come on right when you are dying to say something?) or after laughing at something extremely amusing. So to our spasm-less friends, here is some advice on how to react to a coughing spasm:

Do Not:

Ask if I am ok while I am having a coughing spasm…
Although you mean well, quite frankly you will most likely (a- not even get a response because I am too busy coughing or (b- get a nod of ‘yes’ anyway because that is the only thing I am able to do. In fact, it is best to avoid any sort of questioning during this time period.
Side note:If you feel compelled, ask me how I am after. My answer will be “fine” 99.9% of the time though, so you might get bored with my cut and paste answers.

Pat me on the back
Contrary to popular belief, patting me on the back will—if anything—irritate things more. Not only that but it makes me feel infantile—the only thing missing is the burp blanket. Keep in mind I am not choking on a chicken bone or anything (beside my own phlegm… TMI?) and the coughing is already helping me out enough. Save the extra physio for later!

Shove and/or offer me water
One of the first questions I seem to be asked when I have a coughing spasm is “Do you want a glass of water?” to which I croak out “No.” It is kind of difficult to drink a glass of water while you are busy gasping for air. If I were to attempt such a task, it would probably make things much, much worse. However, sometimes a glass of water following a coughing spasm can be nice.

Say Robitussin
You are a tool. Enough said.

Make a joke along the lines of “you should really give up smoking”
I’ve heard it before; fresh material is appreciated.

Do:

Keep Talking
If we were having a conversation, by all means keep it going, even if it means creatively continuing a one-way convo for a short amount of time. Feel free to talk louder and OVER my incessant coughing. Nothing is more irritating than having a coughing spasm hijack a conversation.

Stop Walking
If I start having a coughing spasm while we are walking, stop with me. If people continue to walk, I find myself trying to keep up while I am coughing—this just exhausts me and fuels an even longer spasm.

Offer a Kleenex
For those who carry around kleenex, you are convenient. When you are coughing and need a kleenex (even if it is just to hide your face) it is so hard to search through your purse or pockets for one. Sometimes you really just need it shoved into your hands for you.

So there you have it! Of course not everyone is the same, but I think if we compare notes a lot of us CFers would have a similar list.

To top off this post, here is a pic (not for kiddies):

I have referred to this site a number of times and it is usually successful in answering most questions you have thought of (and never thought of!): Cystic-L

It is actually a free e-mail service/support group for patients, families, friends and health-support workers of PWCF (people with Cystic Fibrosis) that started up in 1994. I used to subscribe to it, but then my inbox got increasingly crowded, so I opted to visit the 'handbook' section of the site instead. I recently found a new appreciation for this website when I clicked on the PFTs Explained For You! link. Amazing how after 22 years, I can still be confused by all the numbers on this test. The Handbook is a little outdated in some sections, but still very useful.

What is a PFT Test?
Here is a great video that shows what it is: PFT Test

The only difference with this one is that I am usually sitting down and my face turns a nice shade of lobster red. I also often see floaters/stars by the time I am done blowing, then I spend a lot of time talking to the respirologist so I can avoid doing it again. By the way, this shows one attempt--depending on how you fair, you will usually do multiple attempts until you have done the absolute best you can do (the average is 3-4 attempts).

I will try to explain more in-depth what a PFT test is later this week, but here is the gist of it:

• A PFT test measures the volume of air in your lungs and how much air you can blow out in one second (there are also many, many other things it tests **See Handbook above:" PFTS Explained for You!"** )
• This is important because it compares the functioning of your lungs to other people your age and size
• It helps determine what state your lungs are in, e.g. if you are stable, sick, need to be referred for a lung-transplant, etc.

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)!