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.

During my rough days, I also asked to move up my transplant assessment tests that would need to be repeated in the event that I needed to be listed. At first, the doctor (who works on both the transplant side and CF side) told me not to panic or be rash, but after reviewing my chart and noting my decline over the past few years (and especially months), she agreed that now was the time to get the ball rolling. At this time I still wasn't sure if I was ready to be listed or not, since this could very well be just another 'rough patch' and I could bounce back like 2009-- but something told me I needed to at least start preparing rather than waiting for my March 31st yearly follow-up at TGH (Toronto General Hospital).

Thus, last week (March 21st to 25th), I repeated all the necessary transplant tests (I was assessed 1.5 years ago, but most of the tests needed to be done again) including: abdominal ultrasound (which was a feat in itself... why no, Broken-English Technician, my new lungs are not waiting for me upstairs... and yes, I DO look healthy thank you, I don't wear diseased lungs on my face), blood gas, heart echo, ECG, CT scan, and chest X ray. All of this was done at St. Mikes, along with blood work that included 14 vials of my blood, which were personally delivered to Toronto General by the doctor (and then promptly disappeared forever...).

There were a few outstanding tests that needed to be done at TGH, so on Thursday morning I loaded up an 02 tank and cabbed it over with my parents. Unfortunately, TGH didn't seem as organized as it had been in the past, they didn't have 02 available for me to use (thankfully I was only on 3L and the large tank lasted me), and they had no record of my bloodwork (as alluded to above) and didn't even seem to know I was an inpatient at St. Mikes--all did not make for a warm welcome.

Worst of all, when I got to PFTs they quickly moved me from the machine I was about to use to another because a cepacia postive (a nasty super bug that can be deadly and certainly hinder my transplant outcome) patient had used the machine before me. The technician looked at her sheet and said "Oh, you are late, you were supposed to be here at 8:30 am..." at which point I responded: 1. I was never informed and 2. that would have been near impossible, I had to do an IV med at 8:45 on-the-dot, so that would never have been approved. So, she moved me to a 'clean' machine and we were able to complete all tests there. After this incident, paranoia loomed in my mind as I obsessed over sitting in a chair that was previously used by a 'positive'. Pathetic that my thoughts kept drifting back to an inanimate object--but also justified, it's my life we're talking about.  Later I would change all my clothes and purrell the hell out of my hands.

Anyway, panic event aside, everything was completed: My PFTs had dropped to .66 L from .70 the previous week. My 6 minute walk test (a test where you walk as fast as you can in 6 minutes) showed my first decline ever, 459 metres (almost 100 metres down from my average), on 6 L of oxygen, compared to 547 using little to no oxygen. Also, I usually report moderate fatigue after this test, and this time felt extremely tired, drenched in sweat and my head was pounding... not to mention my hardworking heart was pumping away at 154 beats per minute. People, this is why I don't walk fast for you, I'm not really aiming for the Biggest Loser workout of death look. 

When the day was over I couldn't wait to get back to St. Mikes (home sweet home?) and nap the evening away, in fact after dinner I promptly fell asleep shamelessly in front of my parents and did not wake until hours later. Week of testing complete!