Archives: Transplant

Not much more news again tonight.  Oli is good, his brain and the lungs have definitely begun talking more as his CO2 levels are brilliant and if he continues to breathe deeply then he may only need two more nights on neve, hooray!

The central line in his neck which takes the antibiotics into his system packed up this eve, just as he was calming down for the day.  After one numpty doctor and three numpty failed attempts to re-site the line in his arm, a clever nurse remembered his portacath (after some gentle prompting from Oli’s Mum) and the line was sited in one attempt.

We left Oli trying to get over the stress by chilling with his Dad.  Now he has no annoying lines in his neck, I hope he sleeps better, we’ll see.

***Now we’ve reached a kind of plateau where progress is good and steady, I might not update each evening unless there is something I think you’d like to know.  So from now on no news is good news and written news is super news x***

Hi guys, gonna be a short one today as am really tired this eve and my brain is just about to close down for the day.

Oli is good.  All his levels are good, CO2 is a bit high but neve is doing good stuff at keeping levels in check.

It seems like it’s going to take a couple of weeks for brain to make friends with the new lungs, a few messages are getting through from brain to lungs and vice versa but they’re not really best buddies yet.  We’ve been reliably informed that a couple of weeks will make them firm friends.

Oli’s very tired, drugs and lack of sleep are making an already tough job even tougher – however, as we’ve already seen, he is a super trooper and is toughing it out.  I think he may see the steady progress as a bit of a backwards step which it most certainly isn’t.  I know that not being ‘with it’ is frustrating Oli but we are happy in that these are the early days when Oli is so full of these drugs which make him woozy and play with his mind that actually, when he is up and running, Oli probably won’t remember anyway.

Night night everyone, sleep tight x

We had a lie in today to catch up on some much needed sleep and so went to see Oli this afternoon.

I wasn’t there when they moved Oli to the ward yesterday so was really pleasantly surprised when I walked in to see that he has a tv/dvd player and a fridge that I’m sure is meant for important things like drugs but that we have taken over to store chocolate milk and other vital get-well-soon yummy things.

Oli’s had a very tough day today.  Don’t get me wrong, he’s still doing fantastically well, but I think today might have scared him a little and made him see a mountain that he wants to be at the peak of before he’s really set off.  It appears as though his brain is finding it difficult to trust that his lungs do actually work fine and are capable of working harder than he’s pushing them to.  The amazing team around him have been encouraging him to take deep, slow breaths in order to open up all of the airways and make sure the alveoli at the base of the lungs are being used.

In order to give Oli a bit of help with this, they’ve given him another Neve (our name for NIV – Non Invasive Ventilator), like he’d been using pre-transplant.  The idea behind it being that it takes an awful lot of effort to breathe deeply when you’re not used to it so neve can aid Oli at times thorughout the day and night, especially when he is tired or when his CO2 levels go up.

Oli hasn’t taken to this new Neve much, she’s very much the same as the one he’s used but he now finds the mask a bit claustrophobic (pls forgive spelling mistakes) and has been getting panicky after short periods of use.  The marvellous nurse Jason who was looking after him today managed to finally tweak the settings and adjust the mask and eventually this evening, Oli has been more comfortable on it.  We hope he might use it tonight to help him sleep well, I really hope it works for him.

The other, slightly scarier thing Oli has found difficult today has been the hallucinagenic side effects of the very strong drugs he is on.  Apparently it isn’t unusual (we had actually been forewarned about this by Emily who told us she liked to imagine conversations with her doctors!) but it is never-the-less not pleasant, and this evening after starting with seeing shapes and squiggles led to thinking the bed was trying to swallow him. 

We left him tonight calmer but exhausted and with permission from the docs for his big bro to stay with him in his room tonight.  I really hope he gets some good sleep.  Sleep is so important for the body to heal and he has a hard enough journey ahead already without suffering from lack of sleep.

See you tomorrow x 

Hi everyone, this is K.  I have had permission from Oli to keep you all updated and help provide him with a blog which will cover his progress as he recovers.  In case you hadn’t caught on yet, Oli has had a transplant!

The call came this evening around 7pm, just as Oli had got in the bath, a bath which he had been wanting all day but his lungs were being particularly difficult and he had to wait for them to give him a break.

We all hopped in the car and drove to Harefield, driving in torrential rain that made the journey very interesting as I’m sure the puddles were nearly swimming pool size in places.

Things happened very routinely once we got to Harefield. We know the drill by now, settle into the room, watch Oli have copious amounts of blood taken by the vampire docs, swabs from almost every part of the body, shower and shave with special pink liquid, and then the wait.  And more waiting.  And more waiting.

The news came at 11pm as Oli was in the shower, he really wasn’t having much luck with getting clean today, however this news was the news we have been waiting for for 2 ½ years, the transplant was going ahead and he was due in theatre at 00:15.

The mood in the room was strange, Oli was totally calm, instantly got onto his phone and started letting everyone know.  I was absolutely excited, amazed, nervous, scared, every emotion you could possibly imagine, I had it all at once.  Whereas I couldn’t stop shaking, Oli was so chilled and relaxed – I am still amazed by the strength of character this guy has, he really is one in a million.

The only time he got nervous was when we got to the theatre doors and weren’t allowed any further.  The goodbyes at the doors were very difficult, it’s so hard to reassure someone who is about to have their life changed that everything will be ok.  It isn’t anything we have experienced before and so words weren’t enough.  Watching Oli being wheeled down to theatre was the most amazing feeling in the world, good luck Oli – we’re here every step of the way…

I am very much asleep when the alarm goes off this morning and I prize myself out of bed in a slow and careful manner. Drugs duely flowing, I try my hardest to stay awake while they run through, watching some Making of Toy Story DVD as I do.

Once the drugs are done I’m about focused enough to run K into work, but when I get home I take myself straight back to bed for another hour’s kip, which is rudely interrupted 45 mins in (just when it’s about perfect snoozing) by the postman, who can’t let himself in again (to the building, that is – he doesn’t try to break into our flat of a morning).

I decide it’s pointless trying to re-claim my 15 minutes and so head for a bath instead, then check my email quickly before Mum arrives to whisk me over to Oxford for my physio appointment.

My CF team in Oxford have recently reached a deal with the physio department whereby they can cross-pollinate departments – whereas I used to only be able to see chest-specialist physios (who are paid for under the CF-care banner) if I wanted to see any other type of physio, it would have to be a paid-for referral either from my GP (who’s in the wrong PCT) or the chest team (who can’t afford the extra fees). Charging issues ironed out, however, I am free to go and see a muscular-skeletal physio who is part of the Churchill team up the corridor from my usual clinic.

What a difference a specialist makes. My two regular physios sat in on the session too, eager to learn the basics of what they could do to help me (and others) out with my neck/back problems, all of which stem from the extra work my respiratory muscles are having to do to make up for the cruddy condition of my lungs. After half and hour’s poking, prodding and manipulation, I can already feel a difference, and the physio promises if I can get up there every week she’ll find 10 minutes to have another go and keep the main parts mobilized, with the eventual aim that I’ll be able to strengthen the muscles back up to pull more weight without so much strain.

After my neck session, I head down to the treatment centre with my regular physio for a regular chest physio session, at which we also do my L-F, which stands back up at a healthy (relatively) 0.8/1.5, which is good to see. Even more astonishingly, my weight has now hit 56kg on the clinic scales, and that’s without a thick jumper on. I’ve NEVER been this heavy before, and it feels like a real achievement.

Back home I feel terrible because K’s had a bad day at work and only been home half an hour but all I can do when I walk in the door is fold myself into bed and fall asleep. Rested an recovered after an hour or so, I try to make it up with Tea (which is usually a good place to start) and she appears not to harbour any of the kind of grudge I think I would given reversed circumstances. It’s times like these that my “frailties” really bug me – it seems such a small thing to ask to be able just to chill and have a cuddle after a bad day, but when I’m tired, especially from travel, I’m really not in a state to do anything. What makes K so wonderful is the fact that no matter what the situation, she never complains at all.

In the evening, an old school friend who’s recently moved back over from France pops round and we have a giggle-some night of pizza and board games. We discover, much to our disppointment, that Operation really isn’t that difficult if you’re any older than about 10. None of us had played it for years, but he’d had it at home and thought it was in marvelously bad taste to bring it round (which we both readily agreed). Naturally, they let me win, since otherwise it would just have been rude.

Another couple of games of Scene It (of which I won neither, let the record show – for those of you who think I must just walk it every time), and B headed off home. My drugs were due later than normal because of bad planning on my part so K headed to bed while I did my last dose, watching some Sky+’d Simpsons and the start of The American President, which I’d recorded a while ago before surfing the ‘net for a while during my evening nebs.

I eventually make it to bed about 1.30am, where I read Kevin Smith just long enough to make my eyelids heavy then settle down for the night.

That’s the sound made by me hitting yet another low after a nice 48 hours of high.

I’ve been um-ing and ah-ing over whether or not to drag down the recent positivity of my posts by indulging in my slight rearward step, but on reflection of the last two days I realised that what this blog started out as was a way for me to keep track of the course of my progress up to and hopefully beyond the point I receive my new lungs.  It seems entirely counter-productive to gloss-over the bad bits in order to spare what few regular readers I do “entertain” on here from being exposed to more difficulties.

Yesterday was actually a really good day – spent largely in bed/on the sofa doing very little indeed recovering from Friday’s grand night in, then sharing a lovely meal with K’s ‘rents which saw us pass over her Dad’s 60th birthday pressie (which is only 6 (and a bit…) months late).  Was worth the wait, though – we got a photograph he had taken in Central Park blown up and printed on to canvas for him and it looks amazing.

It wasn’t until after they had left that the day slid away from me.  Every night I sit at my computer in the study and do my nebs and casually surf around the ‘net for the 15-20 minutes it takes, most often taking in other people’s blogs and catching up on friends’ news.

On Saturday night, I made the mistake (it would appear) of clicking through into Facebook while I was browsing.  It was there that I found a new batch of photos a friend had put up of the festivities at another friend’s wedding.  The happy couple (God bless them, in the most sincere way possible) are friends I used to work with at MK Theatre and have enjoyed many a night out with over the years, both at work and outside.

Clicking through the newly-created photo album (put up by someone who clearly left the party too early if they were awake and/or sober enough to be able to connect their camera to a computer and upload the pics), I was met by face after face of happy, smiling people with whom I’ve enjoyed countless brilliant nights out over the years I worked at the Theatre and, indeed, since I left.

It struck me suddenly – in that sort of round-house punch/kick in the crotch kind of way these things tend to occur to you – that it’s been a very, very long time since I was out with all of them.  In fact, it’s been a very, very long time since any of them would even have thought to bother to ask me to go out with them.  Not through any fault or malice on their part, but simply because they know I wouldn’t be able to join them.

Sitting looking at happy face after happy face, smiling friend after smiling friend, it slowly dawned on me just how long it’s been since I’ve done anything remotely “normal” for a 25 year-old who claims to work in the Theatre industry.  I’ve not been to the Theatre, I’ve not been to the cinema, I’ve not been out for a drink, I’ve not even been out for a latte or “done lunch” – it’s not just “normal” that I’ve missed, I’ve even managed to lose “pretentious” too.

I suppose it’s a positive reflection on my state of body/state of mind at the moment that I can sit here after the fact and see inject some humour into it, but it really did hit me quite hard as I flicked through the album.  Some kind of intense sense-memory came washing over me and I could hear the voices, the laughter, the banter, the music; I could see the suits, the dresses, the dancing, the staggering, the pretty, the happiness and everything else.  I wanted so badly to be back there, to be laughing, singing, drinking, dancing – just being.

When I first started this weblog almost exactly 12 months ago, I truly never would have believed that without my transplant I would still be writing it today, so it is with no little understatement that I suggest it’s not a bad thing to be here – sitting comfortably in my desk chair, living with my wonderful girlfriend, having spent an amazing weekend enjoying the company of my friends and both sides of my family – complaining about not “getting out” enough.   If there was ever a “meaning” to this blog – a reason, plan or intent behind it – it was to remind myself of the good things in the face of the bad things.

So it is with a deep breath in and a sigh of appreciation that I thank Last Year’s Me once again for providing me with a place to come to remind myself that no matter what’s going on in my life, my body or my head, things are never as bad as they seem, that there’s always a light at the end of the tunnel and that the most important thing in life is to keep on keeping on – Smile Through It.

I don’t like the change in the weather and I don’t like the on-set of autumn/winter. The change in seasons brings with it, every year, an abundance of new colds, flu’s, viruses and other horribleness and it makes life that much more worrying when you’re desperately trying to keep yourself well enough for a life-saving operation.

Yesterday I developed that odd feeling in the back of your throat, the little tickle-come-small obstruction you feel when you swallow which often prefaces the on-set of a cold or sinus infection.

If I’m honest, it’s petrifying. The last time I was unwell with any sort of cold/virus-type thing, it lead to the worst chest infection I’ve had for years and my body very nearly gave up the ghost. If it were to come around again, if the tickle becomes a cough, if the cough becomes a cold, if the cold becomes something else, it doesn’t really bear thinking about right now.

Try as I might, though, I can’t escape the thought of it. If someone tells you not to think about elephants you can guarantee that they’ll be singing, dancing and tooting their way ear-to-ear for the rest of the evening. An impending cold is very much the elephant in the room.

I’m suddenly hyper-aware of every creak and tweek my body makes, each breath that feels shorter becomes a worry, each cough that feels irregular concerns me. I’m doing whatever I can to get food, drink or any kind of calories down my neck in the hope of giving my body the energy it needs to nip this in the bud before it takes hold.

It’s impossible to know if any of it is likely to work – it’s impossible to know right now whether it is even the start of a cold or just a strange feeling in the throat. It’s impossible to know anything at all, really, which is, again, part of the problem I suppose.  I’m waiting through each passing moment to see what my body’s going to do, to see if I’ve done enough to see it off.  I’m on tenterhooks.

The one morsel of comfort I’m dragging from deep within my reserves of pluck and fight is the fact that as bleak as it seemed to get last time, I pulled through it – I fought my way out of it and afterwards I enjoyed some of the best fitness I’ve had for the last 12 months or so. Should I be facing the same fight again, I can only keep telling myself that I’ve been here and done that, and I should really look into getting a T-shirt.

It is inevitable that the ups and downs of life on a waiting list as fluid and unquantifiable as transplant are going to be increasingly hard to bear – each trough will reach deeper than the last and each peak will seem higher, whatever the physical stats may show.

Without fight, though, where would we be? Without the need to push ourselves forwards, to fend off the onslaught of the outside world against our frail bodies, how would the human race have come as far as it has?  How would we all make our way through our day-to-day lives?  My fight is no more than anyone else’s, merely against a different enemy, on different ground, with different markers of success and failure.

I suffer the slings and arrows of outrageous fortune, and I choose to take arms against a sea of troubles, but I know that without the help of the transplant team at Harefield, no amount of personal opposition will end them. All I can do is to my own self be true, and keep fighting the fight till the clarion call of a new life comes my way.*

*Apologies to W. Shakespeare

Nothing really changes in my life these days – it’s getting harder and harder to find something new to write about that’s not just droning on and on about how hard things can be, or what minute fluctuations my chest is taking at the moment. So I figured that if I’m not up to making sweeping changes in everyday life, the least I could do was to give the blog a bit of TLC.

So here we have it – the all-new SmileThroughIt, courtesy of the lovely people at WordPress (forr all your blogging needs!). Hopefully, it makes the whole thing a bit easier to read – I was surfing the other day and saw the page for the first time in ages and noticed just how SMALL the font size looked on the front (I only see the “back end” of the page, which is all fresh, clean and white, totally different to the published version). It also, I hope, makes it easier to navigate the old posts, or the most recent posts, as well as seeing when I’ve published.

Anyway, as far as the “me” update goes… well, nothing’s changed really.

I say that, of course, but there have been things going on. It amused me last week actually, when I was catching up via text with a friend of mine who’s got himself couped up in the Big House (read: hospital) and he was asking what I’m up to at the moment. I said I’m not doing anything these days, not really up to much. Apart from still doing CF Talk. And the work I’ve got going with Live Life Then Give Life. And talking to the campaigners behind My Friend Oli. And the odd bit of writing.

I suddenly found myself looking back over my text wondering what, indeed, the Roman’s had ever done for us. (Apologies to Monty Python). In fact, said friend said as much in his reply. Told me I clearly didn’t have time to work, even if I was up to it physically.

So yes, I think to myself, nothing ever changes around here, but I’m still finding myself pretty busy. Saturday was a blessed day of nothingness, somewhat of an oasis after a busy week, which had been draining not just physcially, but not helped my the mood swings and negativity flying about.

Sunday we popped over to K’s ‘rents to say hi and for K to raid their loft to try to find some old books of hers to help with her college course. K being K she’s decided not to do the simple, middle-of-the-road, easy-as-the-proverbial-pie kind of project that they expect their students to do, but rather to launch into a semi-professional study which, all things being well, she is hoping to then go on and get published if we can find the right journal for it. The only thing is, it means she needs to wrap her brain back around the statistics info she learned way back when. I am, naturally, completely useless for this as I can’t really count much higher than 10 and ask me to do division and I’m stuck beyond halving something.

While we were there we were, I think it’s fair to say, attacked by our tiniest niece and nephew. I think it’s also fair to say that they’re not going to be the tiniest for long. The little one is nearly as big as his sister now, despite being 13 months younger. In a reversed nod to Animal Farm, he’s just discovered Two Legs Good, Four Legs Bad – it’s so much easier to cause havoc when you have your hands free to grab, hold and throw things while you move. His sister, meanwhile, is mostly contented jumping on me and her Auntie K.

Today I even managed to venture across town to pick up my own prescription, something which I’ve been relying on Mum and Dad for for a while now, although when I told Mum I’d done it tonight she told me off for not asking her to do it (you can’t win sometimes).

Just writing all this down, I’m starting to realise not only that my life is still pretty full and varied, albeit in a different manner to that which I was used to, but also why I started this blog in the first place. More than just a place to air my frustrations, or my minor triumphs, I began writing these posts nearly a year ago in the hope that putting it down in words might help remind me that life’s not as bad as all that and if I only take the time to look around, I’ll see all the wonderful things I have in my life: my family, K and her family (my second family, really), my friends: a network of people who never let me forget myself. More than anything, maybe I’ve reminded myself to Smile Through It.

So it’s been a rough week.  My mood over the last five or six days has been up and down more times than Billie Piper’s trousers in an episode of Diary of a Call Girl (which, by the way, is so atrocious I beg none of you to waste 30 minutes of your preciously short lives giving it your attention).

It’s a struggle to keep yourself moving forward when you don’t know how you’re going to feel, physically, mentally or emotionally, from one moment to the next.  Right now, for instance, I’m feel strong, confident and happy.  Had I written this earlier this afternoon, it would have been a completely different story.

Therein lies the problem, really – how do you deal with a physical and emotional state that’s ever-changing from hour-to-hour?

If I was feeling permanently down or upset, it would give me something to focus on, something to seek to improve or seek help with.  If I felt permanently tired and exhausted, or chesty and rubbish, I could get on the phone to my team in Oxford and get them on the case.  But I don’t feel permanently anything, other than permanently changeable.

The plus side is, of course, that with all the downs come all the ups.  I know that when I’m feeling miserable, I’m more than likely only a couple of hours away from feeling OK again and when I’m feeling chesty, I’m only a physio session and a nebuliser away from being comfortable enough to make a cup of tea.

It’s the endlessness of it that’s starting to wear thin, though – the relentless ride through peak and trough which starts to grind away at the inner reserves one builds up over time to deal with the regular lifts and dips of life.

I feel like I’m slowly losing a sense of “me” – like I’m losing touch with the essence of who I am because I’m being subsumed by a constant need to “cope”, to get by, moment-to-moment from each new challenge to the next.  I don’t have room to let myself breathe (no pun intended), to stop and just plateau.

I don’t know if maybe there’s a sense of a time-pressure that still hangs over me, like I need to make the most of things while I can in case the day never comes when I get carted off to theatre for my new lungs and new life.  Since, physically, I’m seeming to be able to support myself in doing a little bit more at the moment, is the frustration coming from not being able to do quite enough to satisfy myself that I’m making the most of things.

If I’m honest, I don’t think that’s true at all, but there’s so much going on at the moment that I’m not entirely sure what’s right, what’s wrong, what’s real and what’s imagined.  I can’t put my finger on anything that’s making things better or worse and I can’t identify what it is I need to do to stop these endless fluctuations of mood and manner.

I suppose, though, that no one does.  I’d be a rather remarkable person if I knew to solution to all of my problems.  Finding the way out of the mind’s maze is the journey that makes the end all the more valuable.  But when you’re staring at a hedge with no sense of direction, it’s not much comfort to know it’s a shrubbery for learning.

Hurrah!  I finished the first cut of the Live Life Then Give Life ad last night and I’m really pleased with it.

Ironically, after spending a couple of weeks picking and piecing things together (on and off), the actual picture edit didn’t take me that long, once I’d got to grips with the tools.  What actually took the time was the 15 seconds of titles at the end, which required 3 separate, fully-rendered images created in a separate program and imported into the editing software.

You always know you’re in trouble with a piece of software when you open it’s electronic user manual (it’s another one of those which doesn’t come with a hard-copy version as it would, presumably, take up a whole book shelf) and it says,

“Because LiveType is a creative tool, documentation can only go so far in describing its
potential…In the end, you are limited only by our own creative vision, and the way to push the limits of LiveType is to jump in and start creating”

Or, to paraphrase in more precise language: we’ll tell you what the buttons do, but then you’re on your own.

And in case no one reading this blog has noted it in the past – I’m not very good at being on my own…

Still, soldier on I did and churn out something fairly brilliantly acceptable I did, too, if I do say so myself.

Seriously, I’m actually really happy with this as a first cut and I’m keen to show it to the rest of the gang at Live Life Then Give Life to see what they make of it.  Once I’ve got their feedback, I’ll have to pull my socks up and launch myself into another cut of it, no doubt killing some of my creative babies on the way, but such is the world of film – it doesn’t pay to be precious.

I’ve taken a bit of a leap in second-guessing people’s level of understanding and how quickly they’ll marry the intentions and the images, so it’ll be interesting to see whether or not it works of if I, having been so close to the material for so long, have made some major assumptions which stretch things too far.

We’ll wait and see and I’ll report back, no doubt.  Watch this space.