Celebrating my 2 year post-transplant birthday should be a very joyous occasion (and don't get me wrong, I am so grateful to have this wonderful new life) - but it seems that this beautiful bubble that I've been living in just sprung a leak!
I returned to Toronto General Hospital on February 1 2010 to begin the assessment phase of being 2 years post-TX. I've always enjoyed going back and meeting all the doctors, friends, TX family and getting back into the groove of the transplant life that we left behind in May 2008. I would never have thought that I would have missed the hospital and the 'rat-race' of pre and post-TX so much ... but, sadly I do! I think a lot of this 'grief' comes from loosing the personal contact and comfort of being surrounded by others going through similar situations. Yes, I'm still in contact via email, Facebook, etc. with my new TX family ... but it's just not the same. I actually feel quite alone here at home ...
... back to my assessment ...
I learned on Feb 1 that my FEV1 had dropped slightly during that day's PFTs. My range had been between 2.8 and 3.0, but on Feb 1 it dropped to 2.7. Now, that might not seem like a big drop, and no more is it, but the docs were very concerned that day - the dreaded CRONIC REJECTION was uttered. On top of that my cyclosporine levels were at 316 (supposed to be 100-150), potassium was through the roof, and my kidney function levels were all off .... WHAT IS GOING ON!?!?
So, I left TGH that day with very little explanation as to what was going on ... and to be fair to the doc, she did ask me if I had questions ... but I just couldn't think straight at the time, nor did I have any idea as to what I wanted/needed to ask. I hadn't felt so alone and scared since TX!
The next day I was due for my bronchoscopy. I arrived at the Endoscopy Unit in utter panic. Not because I was concerned that they were going to find something (as Chronic Rejection is not found via biopsy, rather through a process of elimination) - just to whole fact that I DIDN'T KNOW WHAT WAS GOING ON! Luckily I had the same TX specialist as the day before ... and we had a nice chat.
She explained CHRONIC REJECTION to me and advised that she was not extremely worried at this point ... rather she wanted to be overly cautious. She placed me on some new antibiotics/anti-inflammatory meds to see if there's something going on in there, and we will watch my PFTs very closely for the next 3-6 months. I did feel a little better with a more thorough explanation ... but, still, what does this mean for me??
I've entered a very scary place with post-TX ... and just as pre-TX, I'm back into the waiting game again now. I knew there would be ups and downs and that this is NOT A CURE ... but things have been going so well; I guess I've gotten a little too comfortable with my new "buddies" and back to my old way of thinking ... the invincible CF Warrior.
Right now I just have a slow leak in this beautiful bubble ... I'm hoping that it patches itself and doesn't "POP"!
