Last week I turned the corner, finally: my WBC inched below 11, meaning my infection was under control for the first time in months, wheezing nearly vanished, and shortness of breath decreased--all good things. I embraced this positive news with a practiced sense of caution, and sure enough hours later was served up another challenge: I had to change rooms... to a semi-private.

No one likes a semi-private, but I'm not fully opposed, since I've endured it several times before and I'm no princess (officially). But something about this move set off a mental quake; when your health deteriorates before you, when your body crumbles and chisels away at the life you once knew, you cling to the familiar (whatever that might be). This might be a stretch, but it reminds me of 'normalcy' in disaster zones that is maintained by keeping to routine, be it going to church, attending school, or playing a game of chess (as I assume chess is the post disaster game of choice). My 'normal' was creating my own space in an otherwise very abnormal home and the second my security blanket was ripped away, I felt far more vulnerable than I have in a long time. My illusion of control was suddenly very clear; I haven't really had that much control. 

I was rather surprised when I noticed I had a missed call from 'unknown' yesterday morning, although it  should surprise no one that I didn't pick up since a) I rarely pick up my phone, and half the time my cell refuses to work anyway and b) Unknown, really? Do I want to speak to you? Not talking to strangers is a golden rule in life. However, these days 'unknown' usually means a phone call from TGH or Sick Kids (trying to rope me into another study [I've already done 5 billion]... I played the transplant card and I don't think they'll be calling... ever again).

After checking my messages, I confirmed that the call was from my transplant coordinator and she wanted to discuss the results of Thursday night's meeting. Following a brief sweaty-palmed game of phone tag, we finally got in touch and she delivered the verdict:

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: 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.

I was settled in for a quiet night, ready to go to bed early, when I decided it was time to flush my picc line (you have to push saline through it once a day to avoid getting a blood clot). I still have my picc because I decided to leave it in for two weeks to make sure I'm infection-free.

First, let's flash back to yesterday... I was discharged in a rush and forgot my heparin (which thins your blood slightly and prevents clots). I thought "no big deal" since I have a power picc and even brushed off my cystic cysta, H's, warning. Well, come 9:30 tonight, when I attempt to flush my line... nothing happens. I figure it is a fluke, wait a few minutes and try again... nothing. I attempt to draw back blood (which is what you are supposed to do)... nothing. I move my arm around and try coughing...nothing. By five flush attempts in and 30 mins later, I call the ward...

So folks, 12 hours after leaving clinic and just over 24 hours after being discharged I take a quick cab ride back to the ward, say hello to my cleaning staff buddy and pop into the ward. The nurses flushes it with no problems within 5 mins. I feel like a complete idiot and leave.

What happened? Well, either my arm needed to somehow be completely straight... or she just pushed harder... In the wise words of my friend E, we can cancel the wake. I'm alive.

And that, my friends, is how you cap off a fabulous day.

Goodnight.

It's hard to distinguish what counts as "home" lately. When you are in the hospital and out on a day pass /get out of jail free card, going "home" means going back to your hospital room. Downtown this summer my "home" is my apartment, but for now--in my limbo days between IV and no IV--"home" is back at our family home.

Today, quite quickly, I was discharged from the hospital. Last night, when I got back to my hospital home after spending the day at our family home (see how confusing this gets?) for a nice bbq, I was informed that Dr. S was looking for me and there was word of being discharged. So, around 11 pm I phoned Dr. S to see what was up and she said she had a really sick patient that needed a bed and that I was closest to discharge. Of course, I didn't really have a problem relocating to another version of home, since I've been on the other side--so sick, waiting for a bed--and it's just not fun at all. Plus, quite frankly, since I have improved immensely over the past week, I didn't want to stick around in a place where I could pick up something and start the cycle all over again.

You'll have to excuse my lack of updates over the past week, but I've been keeping quite busy. On Monday I had my PICC line insertion, which went the same as usual, as in it took two attempts. So far 1 out of 4 have gone in on the first try... my odds are going down. For this reason, I'm leaving this baby in for another two weeks to ensure I do not require IVs any longer!

A little side note: Unlike the PICC in the link above, mine is actually closer to my armpit... maybe a little too close this time. I also learned during this procedure that apparently veins just collapse and disappear... they tried going through the same vein that I had used last year, but it just didn't continue... it was permenantly gone? duh duh duh

The rest of the week kind of went by like a blur, I started the exercise bike and physio every afternoon and I was hooked up (what seemed like) most of the day. When I was free at night I went out for dinner and a walk. Walking and cycling got easier halfway through the week, which is great progress. The first day on the bike I was dyinggg, pouring with sweat, panting like a dog and my heartrate was climbing quickly. By the third day I was able to cycle comfortably and even turn up the resistance and my heartrate behaved normally for once. I don't mean to bore you with the details, but this all means very quick improvement. When I was admitted I needed 02 for just getting up a walking a few steps, and now I don't need it at all (except exercise still).

They wanted to stop my IVs today (day 10) before I did pfts and then follow up in a month...but of course I refused that--I had a knot in my stomach and I didn't really think that was OK. For starters, I haven't done a mere 10 days of IVs since I was... um 9 years old? 7? I can't even think that far back! Additionally, I don't feel comfortable ending IVs without knowing my pfts. Apparently a 6% drop is not a big deal... which I odd because I was under the impression dropping from 28% (.80 L) to 22% (.65 L) was a big deal... so I guess we'll see what tomorrow brings! But I will fight for that 6%, because it means the world to someone with low lung function even if I'm doing amazing clinically.

Sometimes CF is just confusing!

To be continued...

The past few days have gone by really quick!

It's Sunday afternoon and I'm just finishing up lunch from my room in 6 Bond. I am happy that I have a private room, washroom, HUGE fridge and possibly a flatscreen tv being installed today... hello jackpot, nice to meet you.

The doctors decided it was best I do IVs in hospital, and I disagreed at first. Even sitting here when I was admitted on Friday I started questioning if I really needed IVs or not and my mom was quick to point out that I was suffering from denial. I denied that. But come Saturday morning and I had reclaimed my throne as the fever queen. Chills, sweats, headache, throwing up, low sats (measures the oxygen in your blood)--you name it, I had it. So I GUESS I was in denial...

The resident came in this morning and confirmed that yes, I do have a chest infection and I came in at the right time. My CRP, which is used to measure inflammation, is 30 and the normal range is around 5, while my WBC (white blood cell count, which can indicate infection) is actually only 11, and 'normal' is around 10 and under (mind you mine usually hovers around 7).

Today I am still battling the fevers. They seem to come on in waves, but so far I have not needed to take Tylenol to lower it--a good sign. Another plus, my shortness of breath is a world better compared to yesterday. Yesterday morning I felt like I ran a marathon just from rolling over... today I am going to walk back to my apartment at Church and Gerrard (about a 10-15 minute walk). May as well take advantage of feeling good, because there is no such thing as an uneventful admission, things seem to change from hour-to-hour!

I'm grateful I listened to my gut and came in when I did... I'm even more grateful that my apartment is close by and I won't have to go long without a shower like last time!

Today was my first day back to University in half a year. Back in December I started IV’s literally a couple days after my last exam of the first semester. I was pretty confident I would be off them and able to return by the start of our second semester in January. However, that was not the case and what started as “holiday IVs” turned into “I’ll be back soon IVs” and finally “extended leave IVs”. Even when I was in the hospital with daily fevers, hooked up to 24/7 oxygen and unable to eat, I was still pretty confident I could go back... that really sounds delusional now, doesn’t it?

As the weeks wore on in club med, I got the message my body was clearly trying to tell me: Time to take a break Lindsay!

I dropped the majority of my courses, but was still able to complete half of one via e-mail (the instructor is allowing me to continue the other half of the course this semester... it was pretty impossible to report on Guelph-Humber news from my bedside) and I was able to complete Statistics for Media.

GH Comeback
Now I am officially “back” with some minor adjustments. I decided to drop to part-time studies since I now have to wait an extra year to graduate anyway. This will allow me more time to do things I should be doing like working out. I will say though, this has been difficult for me as I feel quite capable of taking on a full load. But as is usually the case, what you want and what you need are different things.

Although it hasn’t even been a full year since I took my partial leave from school, it felt a little surreal to return. I received the mighty reality pinch when I was reminded that even though your world comes to a stop when you are cuffed to an IV machine, the rest of the world doesn’t lose its forward momentum. Unfortunately I have been mulling over this fact for a while now, usually things don’t bother me too much and I am able to take things in stride. But the fact that I was able to keep up in school all these years and suddenly not be able to is a little crushing. There is a buzz among the fourth year students who are excited to be finishing up and starting their lives (or moving on to the next phase of continuing education) and I have fallen behind the pack. I am used to being a front runner and I don’t really enjoy the rear view--okay, unless we're talking about James Franco.

I’m also a little worried that the finish line is getting pushed further and further back--so I hope it doesn’t fall out of site. I’m not trying to win a race, I just want to finish it! So let’s cross our fingers and hope that a silly little cold or chest exacerbation doesn’t trip me over the next year and a half. The final stretch is where all the sweat, tears and glory emerge.

Finding your Pace
Furthermore, I am contemplating--and seriously considering--applying for our professor’s (Mark Lipton) internship. I’m not sure if this is completely defeating the purpose of dropping down to part-time studies, but it is an opportunity and I rarely walk away from opportunities.

Admittedly, I have a tendency to dive into things, especially after sitting on the sidelines for such a long period of time. When you’ve been sick and made to feel useless, the second you feel better you want to break into a sprint before the pseudomonas (a bacteria I grow in my lungs) police can catch up. I guess the problem here is I need to learn to pace myself, but it is just so hard!

Especially when you are young with so many opportunities and more awareness than the average person (or so I assume) that time is not limitless.

So should I go for it all or be conservative and hold back? The jury is still out (the jury being the voices in my head). My mind is saying yes, but who knows what my lungs will think about this!

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)!