On
Monday, 20th August, 2012, our world was turned upside down and
inside out – looking from the inside out, everything now seems topsy-turvy, and
completely messed up.
Since
April of this year I have been dragged through a multitude of tests as part of
the double lung transplant process. Although attending all of these tests was
time consuming, exhausting and frustrating, they were to lead to a positive
outcome and life, not just existence.
With
all my tests complete, I had begun to imagine what life would be like. After
the initial pain of such a huge procedure, I began to picture my life and what
I would be able to do when I could breathe normally…..
Spending
time with the loves of my life; Jay and I venturing out into the big wide
world, travelling, doing whatever we chose, without the thought which comes
second to that – am I going to be well enough to do it today, will my pain stop
me, how tired will I get? Spending time together, walking along the beach,
running with Jersey and living life without restrictions.
Trips
to America and interstate without needing oxygen…
With
anticipation, I headed into the doctor’s room thinking that they would check
off all the tests I had done and send me off to see the surgeons, who make the
final decision on whether you are listed for transplant or not.
In
a span of ten minutes, the rug was swept out from under both Jay and I, as we
were told that I was not a good candidate for a double lung transplant, this
would not be in my future, I had to return to my specialist hospital for
ongoing care to keep me alive; no new
lungs for me because I had too many serious risk factors; previous melanoma’s,
a teratoma, which is a benign type tumour, in one of my ovaries, CF related
cultured bugs in my lungs which could return in transplanted, shiny new lungs.
We
were both in a state of shock, my tears started almost immediately. Jay’s first
reaction was to fight, throwing facts at the doctor to try to overturn his
decision; anything to give me my hope back, to give us the light at the end of
this long, dark tunnel we had been working towards for so long. Nothing worked;
we left the doctor’s rooms, putting one foot in front of the other, but
seemingly walking on air.
What
do we do now, how do we handle this?
The
week since Monday has been treacherous and longer than any week should be. We
are trying to face reality but also exploring our options. Not only did the
doctor take away my hope on Monday but he also swept away my usually present
fight, my ability to face whatever tragedy is thrown in my direction, to sit
with it for a while, but throw it back with a smile and say, “this cannot beat
me.”
I
feel completely alone and beaten; I had come to a point in my life with CF that
all my fight seemed to be in vain as any treatment path I endeavoured upon made
little difference to my overall health, I was just losing the battle. In
flashing neon lights was this amazing chance, a medical miracle, so to speak,
which would give me a chance to beat this tireless foe and give me a better
quality of life.
This
neon light was extinguished on Monday – this statement sounds ominous and sad
and I hate that this negativity is even uttered by me.
I
know I have a battle ahead, the fight of my life; I cannot predict the path
this battle will take, I cannot imagine how difficult it will be, but even with
the lack of resources I have, I know I will fight my battle until I can no
longer.
My
heart is shattered, my soul destroyed; with a click of someone’s fingers our
lives have been completely changed, we are floundering in a sea of thoughts and
emotions; Jay and I only surviving by clinging to each other and the other
hands outstretched to us as we travel along the unknown.
We
cannot predict the future but we do know what a CF future holds without transplant;
I shake my head in disbelief and wonder how I knowingly face this imminent foe.
©
Leanne Demers, 24th August, 2012
