Tomorrow is the big day, the day where my entire health team (Physiotherapists, Doctors, Social Worker, etc.) gather with the transplant team at Toronto General and present my case Dr. House-styles. Initially, I looked at this day with a sense of dread: it meant this was it, I was giving up on these lungs once and for all and officially taking a giant leap of faith into a world unknown. But as things have progressed and my state of health has continued to decline, that dread has turned into excitement with a hint of desperation--I'm running out of options and I need this, I've lost the luxury of time to mull over this decision.

Perhaps I should provide you with more background: last week the Chest Fellow came into my room for an afternoon chat, she told me that I wasn't stable enough to leave the hospital (even for homecare) and that we probably wouldn't even discuss the possibility for another 3-4 weeks (at this point I'd already been in the hospital for a month). I suppose I didn't truly realize the gravity of my situation until she said that it was possible I would have to stay here until transplant and that they (the medical team) would be suggesting I get listed at Status 2 (the highest status on the transplant list). I was just warming up to getting my feet wet, now they wanted me to dive into open waters...

It's hard to tell now if I'm in the eye of the storm or if it has passed by me completely. Those last two posts were written during some rough days; my infection was raging and by WBC was hovering at 17. By Tuesday (March 22nd) we decided that it was pretty clear the IV antibiotics weren't working and we would add a third (Cipro IV) to see if that would help move things in the right direction. IV Cipro is apparently not used very often because studies indicate that the oral form tends to work just as well, it is also quite expensive and reserved for very ill patients for this reason. Since I didn't really have any time to play around with oral Cipro and later ponder if the IV form would have produced better results, I fit the bill. Since then, I've been staying steady and slowly improving, my WBC has dropped to 13 and my oxygen dependency has decreased--the load has lightened a bit.

Backtracking: The following was written March 18th. WBC was 20.

These past three days have been hard. During the day I need my mom here all the time because the act of just sitting here leaves me breathless, my chest is constantly heaving with effort and things that I took advantage of a week ago (like reaching for my pills an arms-length away or walking to the washoom) have all become such effort. .82 L days, I miss you... these days are humbling and scary--how does one crash so fast? Cursed with a wicked imagination, a reel of possibilities play through my mind, and none of the scenarios are rosey. Suddenly I find myself constantly talking about transplant--not wanting to "miss the boat", since that possibility is very real.

Yesterday I went for my first walk in two days, it was nice to finally get out of the confines of this room, however it wasn't nice to nurse my hypoxic headache after. I now need to use 3 L of oxygen for walking (or anytime I get out of bed basically), 6 L for exercise, and .5 for sleeping and when I'm sitting and feeling in distress--this is a drastic change from last week when my sats were 96-97 and  I required no oxygen. It's baffling and disturbing how quickly CF can rear it's ugly head and knock you down for the count.

Backtracking: The following was written on March 15th. WBC up to 16. PFTs dropped from .82 to .70 in 48 hrs (Between March 8th and March 10th).

These past two days have been rough. Ever since last Wednesday my lungs have taken a sharp decline; the shortness of breath has been growing and the lethargy caused by every little movement is intense and troubling. I must admit, it is quite scary and humbling to go from the top of the world to the pits in seven short days, it kicks you down and cripples your sense of confidence. Yesterday (Monday the 14th), we decided to change my drugs since it was evident that due to my increasing shortness of breath, increased mucus production, and coughing up blood yet again, that my current combo was not working. To give you an idea, last Tuesday I was bookin' it to Dundas Square, taking quick strides in my heels and weaving between the masses to quicken my course to my final destination, on Saturday night the ease turned to effort as I struggled to walk against the current, wheezing, huffing, puffing, crackling.

Backtracking: March 9th

If March 8th was encapsulated bliss, March 9th was a flood of nightmares.

It started off with the ever-so-tasty fructose syrup from diabetic hell in my cup--this was the OGTT test I was required to do to prove once and for all that I was not diabetic. The good news? I wasn't diabetic. The bad news? The OGTT appeared to set off a tantrum for my recovering, temperamental, lungs.

Besides being hungry and grumpy enough to punch walls (which I couldn't due to lack of energy anyway) I started feeling extremely short of breath and felt my heart pounding in my chest like a wild beast trying to escape my rib cage. After attempting to get dressed, I sat down on my bed and tried to catch my breath, I popped on my SAT monitor and yup, my resting heart rate was 125--not ideal.

Backtracking: February 25th-March 8th

I finally got a bed on Friday (the 25th) and was started on my dream-team med combo (Meropenum and Chloramphenicol), the very combo that saved my lungs from being permantly fired in 2009. Within 24 hours I felt great, my voice had returned in full-strength and my shortness of breath had lessened... I hopped on the exercise bike daily and didn't require oxygen--my levels, oddly, were fine. However, we later did decide that 1 L of oxygen would be helpful, since my heart rate shot up to 160, and it was very possible my heart was overcompensating for my weak lungs (thank you overachieving heart, remind me to reward you later by avoiding all trans fats). My main problem, upon this admission, was the inability to clear mucus (which, let's face it, is a lingering issue), all the physio in the world cannot get the stuff moving, which makes it difficult to clear infection despite strong antibiotics, if you can't cough it out... then you have a problem.

Backtracking: February 16th-24th

I write out the word 'calm' with slight amusement tonight, as I realize my definition of calm is and was anything but. Needless to say, home IVs were not the cakewalk I'd hoped for; I woke up with my usual start-of-IV-fever, and coughed up streaky blood two days in. After one week of IVs not much had changed, if anything I felt worse on my insane schedule coupled with the pressure to gain weight and monitor my blood sugars (which is difficult to do when all you want to do is sleep, plus the blood sugar monitoring required 2-hr fasting). I spent the week in a complete zombified state, hanging my Tazocin every 6 hrs and Meropenum every 8, whilst doing my regular treatments in between (three nebulizers a day and three physios a day for those taking note). At the beginning of the week, I was ambitious enough to continue walking around the block so I wouldn't evolve into some sort of useless lump on the couch, but by the weekend I was completely drained and couldn't get off the couch--I had no problems with accepting my role as couch mole.

Backtracking: February 15th
Procrastinators take note: it is never a good idea to fall behind on documenting your own health record.

First, you may notice I've changed my blog around a tad (ok more than a tad) in order to avoid the actual 'work' that needed to be done. I realize Grandparents will be sending me evil e-mails regarding this change so let me try to make this transition easier: 1. To leave a comment you have to click on the post you are reading to see the 'comment' box, and 2. All my tags and blogs I follow, etc. links are grouped at the bottom of the page... I'll try to fix this if I'm feeling ambitious again.

Now onto the fascinating storytelling...

The next clinic on Feb 15, started out semi-promising (so it seemed); my PFTs were back up to 25% and I was feeling ok. But when the new fellow (who I've grown to love) entered the room, all of my inflated sense of health quickly deflated and I was hit with a tsunami of information. First, we agreed that just 'ok' was not good enough and that obviously I had reached my plateau with Cipro and oral antibiotics in general--this point was emphasized by the fact that my WBC (which hadn't been checked the week before) was 17. Yikes. FYI: anything below 10 is normal.

Then and there we quickly decided that I needed IV antibiotics and before you could blink I was down in radiology getting a PICC line inserted. In fact, this happened SO fast that I had to send my mom out to buy me a t-shirt, while my arm was being sliced open, since my long-sleeved shirt was no longer a practical option and hospital gowns are never an option in my opinion.  I opted to subject my right arm to the PICC line fun this time around, since my left arm is a big spaz (veins spasm, that play on words sounded more entertaining in my head) which is not hospitable for the wire rode that wants nothing more but smooth entry into your superior vena cava. As a result of my decision, they got the PICC line in first try, no problems!

Backtracking: January 30th-February 14th

Remember that time I promised to 'continue tomorrow' only to bail like a bad, deceiving date? Yeah, I apologize. Please take me back and grasp onto my good qualities after reaching past my less desirable (unreliable?) qualities. Where was I? Oh yes, once upon a clinic day...

First off, I barely made it to clinic day. After arriving home Sunday night I replayed the morning in my head: the blood, the struggle to breath, the unbelievable feeling of helplessness coupled with  not being able to talk (again--keeping in mind that my voice is my most prized possession) all led me to an internal panic. Internal panic could only stay that way for so long before it was externalized and I wanted to phone the on call doc... BUT I knew they would only tell me to come to (germy) emerg and I opted to wait it out for two more days--48 hrs until I'd have my answers.

Backtracking: January

After a long four-month pause,  I think I'm ready to type: fingers are stretched, brain is as alert as it will ever be, and the cloud of denial has lifted enough that I may peek out from under it. Since my last update my DIOS issues subsided and my lungs decided that it was their turn to creep back into the spotlight. I use the word creep with intention, as things have so gradually diminished that I was unable to take notice until quite recently. As my lungs were plotting their takeover, I was busy plugging merrily along: I graduated from the University of Guelph-Humber in December (after 4.5  years--woo!), and then embarked on a post-celebratory trip to Barbados with the fam jam (since my sister also recently graduated from her massage therapy program). It was good to FINISH something, since CF has a way of turning you into an unintentional drop out or failed hobbiest.