Saturday, 6 April 2013

All our pesky lungs.

I got released from Addenbrookes last Friday, the 29th March. My last immuno-absoption treatment was on the wednesday, and from the time that last bit of heparin was flushed down my line, I was pestering every nurse and every doctor to get the annoyingly crazy alien probe out of my poor battered neck. I was blissfully distracted by a visit from some friends on thursday, who came bringing KFC, chocolate cake, pressies, and an afternoon of laughs. After they left the nurses obviously had felt left out and came like hawks eyeing up my cake - eyeing, not eating. Only fav nurse Megan got some that evening. The docs then came brandishing the news that my liver was, well, perfect!! No more rejection, levels were just as a normal persons' should be! Line was whipped out and I celebrated all this fantastic news by doing some gentle head rolls. They later informed me that they wanted to keep an eye on me for a few more days, and as my chest was still playing up by producing a shed load of green gunky shit, they were wanting to transfer me to the Brompton. Knowing the Brompton and it's crazy annoying bed situation ("You want a bed do you? Wait 3 weeks."), I knew that to set a date would be an elusive impossible task. The long Easter weekend meant that everything was made a million times harder, not so much for Addenbrookes who seems never to sleep, but for that chest hospital that seems to doze heavily on the weekend, and hibernate on any sort of holiday. Friday morning came, and just near the end of the Hitchcock film I was watching on BBC2 (right near the end, thanks), Dr Allison came in and said I can go. Like, today. Like, now. The Brompt only wanted me to call on tuesday and arrange an outclinic appointment!


Of course an 11am 'now' ended up being a half 6 gettaway, but I was escaping! (The fact that I had to return on thursday for clinic was insignificant, I could go home!) 2 and a bit months later I was finally leaving to go home! I left in a glorious sunset that cast a warm orange glow all over the hospital, and as I looked back over the undulating fields at the strong higgledy piggledy giant, it looked like some epic Hollywood hero. Cheerio my Life Improver. Oh but home...! Fluffy cats, proper tea, a duvet, a sofa, lie ins, oh it was heaven. Previously I had been a bit ambiguous about whether I needed creon or not, but as soon as I was home everything in THAT department was perfect. Maybe it was the IVs messing my tum up a bit, maybe it was a slightly pathetic need to be at home. But this was a heavenly discovery. "Then felt I like some watcher of the skies when a new planet swims into his ken..." Yeah Keats again, but he never fails me and I have this shit in my head. "...Or like stout Cortez when with eagle eyes he stared at the Pacific - and all his men looked at each other with a wild surmise - silent, upon a peak in Darien."A revelation - my pancreas works! It does it does it actually does! The Brompton had been doubtful I wouldn't need enzymes, so I had until then been tentative. I was a little shocked - this I think was the first time I thought wow, my life has actually changed. That's 50 tablets off my daily tally! The amount of time I would be in agony, bent double, or sat on the loo regretting forgetting my enzymes or despairing at how on earth I could be getting this wrong, still. Sorry if this is TMI, but CFers know what i'm chatting about.

So as that department was sailing into heavenly waters, the chest department was being tossed into a maelstrom. I couldn't walk up the stairs without having to sit and try and catch my breathe for ages after, and I was producing ever more sticky green gunky crap. I was only on doxycycline and my podhaler - azithromycin to my great despair had been ruled out as it upsets my immunosupressents, so I was only on a minimal amount of antibiotics. As monday (my birthday!) approached, it was just getting silly.

Monday, my birthday, was a day spent at home, watching Ace Ventura, eating cake, and playing with my goodies, and a lovely diner out with the fam. Not very action packed, but I loved it in it's simplicity, chilled-ness, and un-hospital-ness. Un-hospital-ness mostly. I left a message for the CF nurses that night saying how shit I was, and by Tuesday afternoon, I was sat in clinic. By Wednesday afternoon, I had a bed on Foulis ward.

This is where I am now: picc line in, overnight feeds, a concoction of new antibiotics, and the big revelation - a diaphragm that refuses to go down. My left lung had collapsed during my transplant, and had then been blocked up with solidified gunk. Now that gunk has been moving up, the diaphragm is left in this locked position meaning my lung doesn't inflate properly. Bummer. I don't know whats going to happen, I hope it'll start to move. Docs tentatively say yes, mixed with some "it'll take time"s and "we'll see"s. It's the first time i've actually felt like I have a poorly chest - I have a chest condition that's permanent. It's un-nerving. I don't like it. They might try this new Mannitol thing, and I like sugar in any form (icing, caramel, granulated, cubed, inhaled). I also have this saline shisha pipe that I puff on like the caterpillar from Alice in Wonderland. "Wwwwhoo. Aaarrrreee. Yoooooooouuu".

One consolation is that i'm still in the same borough as my humble abode, can see Trellick tower that is the other end of my street, and I know me and my lungs are in safe hands. The Brompton is fab that way. One way it's not fab is that you're surrounded by the occasional moment that you fear the most, those dark heart dropping moments, a death on the ward.

Thursday was one of these days. I had been hoping to pop along to a friend's room that afternoon to say hi - Sam and I had been chatting and messaging on twitter for a long time, and even though I had never met her, you share so many lovely moments and conversations that you feel as if you have made a proper friend. My parents arrived so my plan was regrettably delayed, though reflecting on it, I would never have been allowed. Sadly, I never got to meet Sam. It was a horrible, horrible evening.

Sam had been waiting for a transplant since 2010 but sadly wasn't as lucky as I. It's not fair that by the flippant roll of Fate's dice some are flung into a world of optimism and happiness, and some are left hanging, waiting. I didn't think "why me?" because I know we are all equally entitled to this chance at a new beginning, and it IS just down to sheer luck of that dice. It's just so utterly devastating that her numbers didn't show. So much has been done to raise awareness of organ donation and to get those numbers of donors up, and it has been working - the figures show it, but there'll always be casualties in this tough game and i'm just heartbroken that Sam was one of them. Reading her blog you catch a glimpse of how hard her life had become, and I was in awe at the strength of her character to remain so positive and down-to-earth in the face of such crushing blows. I just hope that if ever i'm in a similar position to her health-wise, that I share that strength. Hell that can't be easy. She is the first i've known to die, and is a stark and shocking reminder of what we're all fighting against. I'll be thinking about her, and husband Luke, for a long long time.

And HELLO if you're reading this and haven't signed up, can there BE a better reason to sign up? I'll even post the link like the pimp I am to make your life easier there. Just click it won't you?

Here on the same page you have what fantastic things organ donation can do and what despair seeps from the lack of it. I'm such a lucky gal.  

Update 1/9/13:
I was speaking to Sam's husband Luke yesterday, who told me Sam was a huge fan of Keats and had some of his poetry read at her funeral, including this following section. I would just love to add it here, as it truly is beautiful - one of my favourites, and I can't think of a better way to remember such a gorgeous girly who definitely will never pass into nothingness. This is the first section of Endymion, a fitting goodbye.

THING of beauty is a joy for ever:
Its loveliness increases; it will never
Pass into nothingness; but still will keep
A bower quiet for us, and a sleep
Full of sweet dreams, and health, and quiet breathing.        5
Therefore, on every morrow, are we wreathing
A flowery band to bind us to the earth,
Spite of despondence, of the inhuman dearth
Of noble natures, of the gloomy days,
Of all the unhealthy and o’er-darkened ways        10
Made for our searching: yes, in spite of all,
Some shape of beauty moves away the pall
From our dark spirits. Such the sun, the moon,
Trees old and young, sprouting a shady boon
For simple sheep; and such are daffodils        15
With the green world they live in; and clear rills
That for themselves a cooling covert make
’Gainst the hot season; the mid forest brake,
Rich with a sprinkling of fair musk-rose blooms:
And such too is the grandeur of the dooms        20
We have imagined for the mighty dead;
All lovely tales that we have heard or read:
An endless fountain of immortal drink,
Pouring unto us from the heaven’s brink.


  1. I hope they manage to sort your lungs out! Massively rude of them to be playing up whilst you're finally getting your liver and tings sorted. Hope you manage to get back home as soon as.

    I was massively sad to read about Sam, I haven't stopped thinking about her. She was always so lovely and positive. xxxx

  2. Just catching up! I am so sorry that you are having so many ups and downs. I was hoping it would be all smooth sailing for you. But I guess it's pretty common to have some complications, just hope they don't last much longer. I was so happy to read that you were out...but then back in again =(. That happened a couple times with me. I hope they are making you all better this time so you can stay out for good! Also happy belated birthday!!!
    PS I was very sorry to hear about the passing of your friend.
    PPS Yay for scars! I've grown pretty fond of mine. I like to think of it as the ultimate tattoo. You've definitely earned some street cred! hah