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"!
2 comments:
Sorry you didn't exactly have the best appointment. I hate not knowing what's going on or what the cause is of certain things...drives me crazy and gets extremely frustrating. I'm praying things turn around soon for you and those lab values return to normal, as well as your PFT's.
I think "chronic rejection" means different things for different people. I was diagnosed with it in August of 2006 (or around that time). I did 2 sessions (15 months per session) of photopheresis, as well as adding a 3rd immunosuppresent and a daily maintenance antibiotic. I have to say that the last 3 years things have been stable and I really can't tell much of a difference being "in chronic rejction." If you don't feel that bad, you will be fine. Sometimes the #'s show more than what you actually feel. And it doesn't have to mean an eventually fatal result....it can turn around with treatment. Each person reacts differently....and each center treats it differently. So I don't want you to worry too much until you know for sure what is going on...and even if it does seem to be chronic rejection... have an open mind...explore treatment options elsewhere if your center doesn't offer them. It WILL BE OK...promise!
ok..sorry for the long comment...just felt bad for you and wanted to try and encourage you a little bit.
Thanks Katey for your comment. It was scary hearing that coming from the docs ... given that I still feel great. I think it was more of a shock to me that thinking it was "the end".
It's nice to know that others post-transplant have had similar situations and have come through them. I have no intensions in letting this stop me ... if it does turn out to be chronic rejection, I'll be fighting!
Thanks again for your comment ... it did ease a lot of fears! xoxo
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