The phrases ‘time marches on’ and ‘doesn’t time fly’ get
thrown around fairly often in everyday conversation, but they are indeed very
true. Listening to Heart Radio’s ‘Time Tunnel’ (where listeners have to guess
which year a selected number of songs played were released in) on Thursday whilst
travelling to hospital certainly confirmed this. Several of the songs seemed to
me to have been released only recently, but the year in question transpired to
be 2002... Some 10 years ago! This got me thinking about my ‘time’ and journey
on the organ donation road.
It has been three years this month since I was first
assessed for transplant and two years and ten months of actively being on the
list. It has been almost one year since my last call for a potential
transplant. Since being listed, I really do feel that my life has been
‘chaptered’ by various passages of time. First and foremost was the ‘average’
waiting time for a lung transplant of 18 months (ha!) I suppose was the first
time punctuation mark in this new outlook. During my first 18 months on the
list I obviously had an incredibly restricted lung function (18-20%) but I was
still able to ‘do’ quite a lot and although my teaching career had wound down
substantially, I was still popping into school once a week or so to work with
some children one to one or to hear readers. However, over time that inevitably
had to stop; it became too much for me to do this. CF is a really complicated
disease as one day I would feel good (by my standards) but on the same day the
following week I could be completely exhausted unable to leave the sofa.
Therefore I did not think it was fair of me to try to commit to any form of
responsibility as I did not know until the day itself if I would be well enough
to go in and it would therefore be difficult to plan around me.
Since completely finishing working as teacher (for now...) I
tended to live my life by planning key things to keep me busy and by looking
forwards to upcoming events; i.e Laura coming over for a coffee; having a date
night with Luke, Beth’s wedding, Luke finishing his doctorate... However, since
coming out of hospital at the end of September this year, I’ve been going up to
the Brompton every two weeks. This has been my new focus and it’s not one I
particularly like. I feel like I’m desperately clawing at all of this extra
medical intervention (permanent intravenous antibiotics for example) to attempt
to remain stable. Now the FEV1 bit of my lung function (how much of the total
capacity in your lungs you can force out in the first second of your breath) fluctuates
between 12 -18% and the FVC ‘bit’ (volume of air that can forcibly be blown out
after full inspiration, measured in litres) fluctuates more dramatically,
between 25 and 45%. If you have a low FEV1 it means that the airways in your
lungs are quite narrow, caused by inflammation, infection... I had a ‘blip’ a
couple of weeks ago and thank God I got over it through changing intravenous
antibiotics and by intensifying my physiotherapy at home (Thanks Luke and
Mum!). My check up on Thursday was ok, lung function is a smidgen up (FEV1 is
back up to about 18% and FVC jumped back up to 45% from 26%) since my ‘blip’
and my oxygen saturation levels were acceptable. The only caveat now is that my
liver enzymes are slightly raised meaning that my liver is taking a bit of
beating... I don’t blame the poor thing for kicking up a fuss; I’m throwing
enough drugs at my body that it has to metabolise! Fortunately the levels aren’t
too scary, so I have to get another blood test next week and keep an eye on
it... Oh the joys!!
These days, I feel quite itchy within my own skin; I know
this must sound absurd but on my good days I just want to get on with as much
as possible, because I don’t know how long my feeling good will last! Then on
other occasions I’ll have something planned and will be too
tired/poorly/whatever to do it! Luke and I managed to make it out to the cinema
last Thursday to see the latest Bond which was well worth the effort! These
days we try and capitalise on the good days when simple things, like going to
the cinema, are manageable as we can’t predict how I will feel from one week to
the next.
Whilst all this is
going on in my own life I am also hearing heartbreaking stories of fellow
CF-ers who have either sadly lost their hard battle with this hideous disease,
or are becoming more seriously ill as they too await their life changing phone
call for new organs. This sharply focuses the notion of how much I need a
transplant, and just how quickly. I don’t care if I sound like a broken record,
but this really highlights the need for more people to sign up to the organ
donation register!
The arrow of time still marches on, we can’t fight against
it (as much as we would want to!) so I must go with it, keeping myself as well
as can be. One of my greatest fears is that I will become too ill for transplant
before my call comes. This is where my faith helps me. I know that life can be
cruel and unrelenting for people, but this verse helps me think of the bigger
picture.
2 Corinthians 4 v 16-18
16Therefore we do not lose heart. Though outwardly we
are wasting away, yet inwardly we are being renewed day by day.
17For our light and momentary troubles are achieving
for us an eternal glory that far outweighs them all. 18So we fix our
eyes not on what is seen, but on what is unseen. For what is seen is temporary,
but what is unseen is eternal.
