Not much new to report. . .

Went out for the first time in a long time last night to see Private Lives with a friend-- great show (I'm not one to provide detailed reviews of plays, sorry) though the ending was open to interpretation. What's more is I successfully climbed the 5000 billion stairs to our balcony seats (Royal Alexandra does not have an elevator)-- with my 02 of course, and sweating a couple of buckets after-- but we made it! Although today all my muscles are slowly starting to ache. . . maybe I'm not in as good of shape as I thought?

Today, nature sided with my mood -- we clouded over, let ourselves be dark and released our inner frustrations.

SO tired of the lack of sleep due to treatments.
Tired of IVs.
. . . of CF being my life and definition.
. . . of being asked a million and one questions.
. . . of being sick on special occasions or my birthday.
. . . of temporary wellness.
. . . of living in limbo.
. . . of having barely enough time to take a shower.
. . . of constantly ordering supplies and booking appointments.
. . . of ALWAYS doing physio, that doesn't even seem to work anymore.
. . . of feeling like a 24-year-old trapped in the body of an 90-year-old.
. . . of being infantilized.
. . . of people telling me I don't look or act sick (though it is flattering).
. . . of being bored. 
. . . of exercising three times a week with (mostly) ex-smokers three times my age.
. . . of feeling unplugged.
. . . of being dependent on others.

October 24, 2011

Tuesday's clinic (before my brief admission) brought me a warning of what was to come, one of the first sentences out of the resident's mouth was "What status are you?" to which I responded status one-- not really giving it much thought because "status" has been a flitting topic all summer long, with most agreeing that status 1 was still suitable for me.

Next thing I knew, the resident returned with my doctor and we were discussing my 'status' with a new sense of focus-- no longer flitting. The doctor came up with an interesting analogy to illustrate her point: she said to picture my declining lung function as a slow descent into a pool. As you first ease into a pool you can still breath and the drops don't matter so much. However, when you're chin deep in the water, each drop, each tiny drop in lung function matters, and it takes just a tiny step more to drown you-- you just never know when that tiny step is going to be. Hence, the moral of the story is when you're chin deep in the water, it's really not the time to play chicken. 

July 27

It's been just over three months since I've been listed-- that's the first trimester of listing, gone. Now the real fun begins, right? This is the part where I get (acceptably) fat and walk around with an energized glow about me, excited by the thought of my new arrival. Scratch that, this is the part where fantasy wilts under the shadow of real life. That 'glow' is really a sunburn from your Cipro induced photo-sensitivity, that fat behaviour is getting you nowhere because you can never replace the calories you're burning, and that new arrival is already causing you stress and sleepless nights because you don't know when it's coming or if you'll even know what to do with it when it does. Things like this make me write run-on sentences without a thread of guilt.

June 6, 2011

Limbo has become a little boring as of late, every week is devoted to what seems like treatment-filled days and physio. I've transferred to a physio/rehab place closer to home, so that has helped free up a little bit of time. I was feeling great for two weeks, so I developed the hopeful/cocky notion that I would be able to go on 'hold' on the transplant list (exactly what it sounds like, hitting the pause button), and enjoy the bliss that is an unleashed summer. It was a Utopian idea that is starting to get smaller and smaller in the rear view mirror as my lungs take over the wheel and I'm simply a passenger. Sound depressing? Well, it kind of is... but it's not forever.

May 30th, 2011

Most of you know the drill by now--lack of updates is good news (usually). I've still been keeping busy with exercise three times a week, and then clinic appointments at St. Mikes in between--it's absolutely riveting stuff.

Clinic on Tuesday was nothing overly remarkable, my PFTs stayed put at 25% (.72 L), weight dropped a tad (which isn't surprising since my appetite is nowhere to be found, yet again), and I decided to have my PICC line removed (doesn't really go with the summer attire). Since there hasn't been much change, I graduated to monthly clinic appointments and hurried on home after spending 11 hours in hospitals for the day (TGH exercise in the morning and St. Mikes in the afternoon). Speaking of TGH, I did my 6-minute walk on Tuesday morning (which I had successfully dodged for about two weeks) and my distance improved since my last test. I was able to cover 502 m in 6-minutes on 3 L of oxygen (though my oxygen did drop to 84% during the test, but no one seemed overly alarmed). Great news, except that I felt like puking the rest of the day (graphic) and required multiple pitstops as I walked from TGH to St. Mikes... but hey, if you don't feel like collapsing and grasping for the straws of life after a 6-minute walk, you probably didn't try hard enough. That's my motto anyway.

May 14, 2011

Next week will bring me to two milestones: I will have been out of the hospital for a month and officially listed for a month!

I haven't really had much energy to blog since I've started my pre-transplant exercise program at Toronto General. I'm required to go to the hospital three times a week to condition my body for such a huge, dramatic, surgery and it's no walk in the park: 40 minutes of cardio (20 minutes on the bicycle and 20 minutes on the treadmill), weightlifting, and stretching. I actually enjoy the challenge most days--it's nice to firm up after sitting in a hospital bed for 8 weeks--but this week has been a little tougher for whatever reason, my lungs are just not having it... did I mention I require 1-2 hr naps after?