You know the week is starting out right when your oxygen -- your lifeline for the past few years and especially the past few months -- is carted away. And there you stand, breathing on your own, without aid, without hesitation and without struggle.

Bon voyage 02 tanks!

I have now graduated to clinic every two weeks, since I seem to be pretty stable. I still go to the hospital three times a week for exercise, weekly bloodwork and pfts -- but hey, having a clinic day off is still a bonus!

Last week I had my second Bronchoscopy to check for rejection or infection. So far everything looks good and if the rest of the results come back just as stellar, I will have my PICC line removed by next week. I have not been PICC-free since September, so I welcome the break.

Otherwise, not much to report. Exercise has been going well, I've even started jogging for short 1-minute spurts (pretty sure my body forgets what 'running' is)... and in between I've been supplementing cardio sessions with "Just Dance".

Before I sign off this post, I will share the most important thing of all (besides feeling great!): My pfts are now 66%! Never seen that number and it will only get better. Very exciting.

Starting back to rehab tomorrow morning... duh duh duh!

I really hope it goes well, as I seem to be an expert in suffocating myself. Like I mentioned earlier, my brain still thinks it working with diseased lungs and that, couple with the tightness of the incision, make the act of breathing hard. My friend M described it well earlier when she said it's like jumping right on the bike without any training wheels first--so there's bound to be some tumbles! I guess I can forgive myself for not adjusting to my lovely new partnership so very quickly.

Meanwhile, I went for two walks today, had plenty of naps, and did some light weight lifting.

In a way I can't wait to show off my new 'look' tomorrow...
My lips are pink.
My skin has COLOUR.
My hands seem softer and light.
And my voice is so clear!

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?

Tuesday April 19

After weeks of flirting and flip-flopping, transplant and I are hand-in-hand: It's official. Today I signed the dotted line and, following a few inappropriate jokes about diseased lungs and death, was listed. Let the wait begin!

It was quite the day of build-up, we arrived at Toronto General around 11:30 and didn't see my Coordinator until around 12:30. We briefly chatted about where to go once I receive the call, travel restrictions (I cannot travel more than 2.5 hours away) and activated my pager. I then briefly saw a man about drawing my blood (they always seem to get you!) and hurried along to meet the surgeon, then we waited... and waited... and waited... and apparently set a new record for longest wait time to meet with the surgeon (2 hours, yay us?). I ended up reading through my entire chart by the time my name was called. P.S. Mildly fatty liver? Fatty pancreas? Pfffft! I'm deeply offended.

Since I'm on a roll here, I thought I would provide additional tidbits.

I went for my follow-up appointment at TGH last week and it went quite well. I really do like the fact that I arrived at 8:30 and I was home by 11:30. PFTs and a visit with the doctor all done before noon!

My PFTs are exactly the same (holding steady at .80). My weight is pretty stable also, which is always good to hear since I struggle with it quite a bit!

I was actually surprised to learn that I had not lost as many pounds as I had predicted. I have had a lot of digestive problems since last summer, which leaves me in pain, feeling ill, weak and unable to eat or do nightly feeds. Because of this problem, Dr. C (who I saw at TGH) has recommended I see the GI specialist. Apparently I should deal with this ongoing problem now because it can get even worse after transplant (I shudder at that thought).

In any case, I am hopeful that my situation can be helped. Maybe I'll just have to take additional medication or adjust my enzymes. It will be a relief not to suffer as often as I do now--I even had digestive problems at New Years and could barely finish one champagne flute. That's just wrong.

Everything else is just as it should be, time for the gut to follow suit.