The other day, I picked up a book, a memoir (b/c I can't stand reading fictional books) entitled ‘Breathing for a living’. It’s in diary format of one gal’s wait for a lung transplant (Tx) due to Cystic Fibrosis (CF)) and the struggles which follows after she got her new pair of breathers.This is the first book I’ve picked up re; CF or Tx. I think there’s a hesitancy (albeit also an intrigue) on my part, in reading other's struggles, which mirror my own so closely. She shares with the readers all these negative emotions & anger she felt while waitng for her life saving surgery. That is something I couldn’t relate with.
I remember when I was approached to get listed for a tx, my initial response was ‘no way, my sister didn’t get one, I shouldn’t either’, fortunately, though, the wisdom of others, I was put on the tx list and simply forgot about it until that is, I needed it. (I waited 3 yrs) Since the circumstances leading up to my actual tx were so unique, I had no doubt that actually having one, was the road I was selected to walk. (there are many CF people who have declin
ed having one, even though its sure to mean the end of their life) Whatever fear lay before me (fear of not living to see it, fear of a negative outcome, fear of being intubated) I never dwelt on it. It was simply a waiting game I bore with little emotion, outside of one day saying to myself ‘ok, I’m tired of waiting, lets get on with it, so I can resume my life!".The one viewpt I can definitely relate with is when she reflects on having lost so many friends to CF in yrs past. She writes’ “I’m doing this alone now. Friends behind me, but no one guiding me in front”. I felt as if I wrote those words myself. Ever since I lost my sister to CF, I have felt alone in this battle. I don’t say it from the perspective that there is no one that cares about my particular situation, because that's untrue. It’s just the fact that there are few that actually know, through experience, what I go through, the gene
ral hardships that used to assail me (before my Tx) and how comforting it was to share those crappy days with someone, w/o feeling like your out for pity. It was consoling to have Margie to keep my health secrets - b/c we knew better than tell our parents, (as they take worrying to whole new level).I rarely try to attempt to give voice to my ‘aches and pains’ simply, because I’ve never felt a relief after doing so. Plus, what can others say in response? Pity is the last thing I want from people. I remember dreading the big ‘conversation’ I would have with friends and boyfriends....the truth 'talk' - explaining my disease.
Well the one thing I’m fully grounded in, is that I’m a realist – the most pragmatic kind you’ll ever meet. The thought of my actual death, is nothing that strikes panic in me, as I've been preparing for it all of my life.
Fortunately, my transplant has changed my very existence.
It’s the first time I felt ‘normal and like everyone else’. I mean, I can actually ‘hide’ my disease (For those who knew me b/f my tx, my tradmark was my chronic cough - which is not easily hid). No more wondering when the next vacation to the hospital will be and no more having to answer 'yes', when asked ‘are you ok’, simply because my coughing was interrupting them.Outside of a few minor surgeries and health concerns, its been the smoothest years of my life - post transplant. I oftentimes forget I have CF - how cool is that! I thank God daily for His mercy in allowing such a transformation to happen - as well as my donor family.
Photos: 1st = Renee, Rick & I in N.C. 2nd = post transplant walking the hospital halls. 3rd = the intern who 'held my heart'. 4th = one of my biggest supporters Rick, sleeping in the hospital room, post transplant
