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.