Super quick note but this made me giggle, I wasn’t there but this is what I imagined happened – the gist is true.
Doc: Good morning Oli, look, if you can eat more today we’ll take out more drains from you.
Oli: (having already eaten 2 weetabix for breakfast) Ok doc, in that case can I have 2 more weetabix and some toast? Thanks.
I wish I could bottle some of Oli’s inner strength, it would sell for millions!
Following the update below that I wrote at half 11 last night, there have been more amazing developments. As of 2.30pm Oli will be out of intensive care and on to the ward, this boy clearly doesn’t hang about!
He looks amazing, in fact the only way to describe it really, would be to say that he looks alive. Fully, properly, healthy and alive. This has even surpassed our wildest dreams.
He’s awake and talking quite happily, taking deep breaths which amaze him as he is still breathing out after he’s stopped talking, he’s had lunch (a ham salad, but he’s not written up for creon so he couldn’t eat the ham! I don’t think the docs even considered putting creon on the drugs chart this early), and he even cut up the bit of tomato himself. This may seem like a little thing but it’s a HUGE deal when you’ve had a life changing operation.
That’s about all for now as I’m off back home to catch up with my family and have a bit of a rest myself. I’ll be back tomorrow though so look for another update then.
Thanks for your patience x
I have to apologise and sayI have completely copied this from Emily’s post on the My Friend Oli site, huge thanks to you Em – you’re a super star.
IF you want to congratulate Oli yourself;
Hurrah!!
Right. Cards are fine and can be sent to:
Harefield Hospital
Hill End Road
Harefield
Middlesex UB9 6JH
UK
Instead of presents a small contribution to Oli’s post transplant fund (made out to Oliver Lewington) can be posted to:
For the Attention of Rose Donnelly
Cystic Fibrosis Trust
11 London Road
Bromley
Kent
BR1 1BY
Where it will be kept safe and sent to Oli on his discharge.
I read some cards to Oli yesterday (he has been reading them himself today!) and he was hugely chuffed, thank you for sending them x
Well, it’s about 11:15pm and we’re exhausted.
Oli has been an absolute hero today. After leaving theatre and being in the Intensive Therapy Unit by 7am we expected to see a very sound asleep chap for most of today and for the next few days. We were pretty wrong, as always, Oli likes to make an impact and boy did he make a great start. After lunch Oli’s big bro and I came back from a dash back to Milton Keynes to pick up a few mislaid essentials to find that he was already off the ventilator and breathing on his own with his new lungs, words can’t describe how wonderful and amazing it was to hear those words. He then followed suit by talking more throughout the day, taking sips of water and transferring from an oxygen mask to nasal specs.
I’m sure this guy is super-human.
However, it is important to recognise that we are still very much in the early days and anything can happen. He has achieved so much today, all down to his own strength and determination (maybe the doctors and nurses and other medical type people can take a little credit!), we need to acknowledge the achievement today but see each new day as another step, hopefully in a forwards direction.
If you would like to send a card, details will follow very shortly. The same for info about any gifts you may wish to send. Watch this space…
Apologies for the slowness of updates, I’m managing to write them each night but internet access is very limited, please trust that I am updating as soon as I can log on.
This is only a brief update, more will come later, I promise.
Oli’s operation went really well. He went down to theatre as planned at 00:15 and was in ITU by 7am.
We’ve seen him a couple of times but he is really,really busy at the mo with lots of wires and gadgets attached to him to monitor every aspect of his recovery. He looks really good, when we first saw him we noticed how his breathing had changed already – it was amazing and unfortunately for you guys pretty indescribable. By the time we saw him again later the nurse was really busy and so we left her to sort Oli out. His breathing had become quite shallow and he was trying to get rid of the ventilator (this is a good sign). The bat plan for now seems to be stabilising his breathing so that they can take him off the ventilator and slowly bring him round. They mentioned that if all goes to plan he could be back on the ward by Thursday, however, it’s really important to remember that it’s early days and it’s perfectly natural and ok if he takes longer to adjust. We all running to Oli time at the minute and that can happen as quick or slow as he needs.
I’m off back to hospital with Oli’s bro, we’re going to be tag-teaming visits with Oli’s ‘rents so that we can be with Oli as much as possible.
Thank you for all your kind messages, please be assured that Oli will see them as we are compiling a memory book for him. While we’re waiting for him to wake up we may even read some of them out to him.
We are so happy for Oli, this is truly the most wonderful gift a person can get and so in your prayers for Oli please take time to pray for the donor’s family as they are dealing with the pain of grief. I would also ask you to take 2 minutes of your time to sign the organ donor register, if you haven’t done so already, at www.uktransplant.org.uk* and follow the links.
Back soon…
*Emily if this is wrong would you mind correcting it for me in a comment? thank you x
It’s closing in on 4am and I find myself sat in the lounge at my parents’ house if not quite wide awake then certainly not sound asleep. Since I finally gave in to my night’s chronic lack of slumber just over an hour ago, I’ve been wondering to myself whether this point marks a new low in my struggle as it has been.
It’s extraordinarily tempting to call it that, but putting tiredness and busy-headedness to one side, if I try to clear up the picture a little bit I suppose it’s hard to suggest right now that I’m worse off than I was when I was admitted to Oxford back in June.
Certainly, chest-wise, I’m not doing as badly as I was then. Yes, I’m still finding every day a struggle and breathlessness is increasingly a problem throughout the day, rather than being something which tended to isolate itself to certain times or periods which could be identified and focused on. And yes, every night is seemingly harder than more recent times to gather myself and settle down to sleep – the effort of undressing, of washing both myself and my equipment, of simply sitting in bed reading is considerably more noticeable than it was a week or more ago.
On the other hand, I’m not spiking the temperatures I was spiking in June, nor am I confined as I was then to my bed, fighting for breath even at rest and needing the highest flows of oxygen I could muster with my various concentrators to see me to the bathroom and back. I am, on the whole, physically better off than I was back in June, although it is tempting to be blinded to it by the storm of exhaustion that has settled in to my quiet little dwelling.
I can only surmise, then, that if I am physically better off than I was in June then in order to be feeling quite as badly as I do about things at the moment, then my head is very far from in the right place. There is a line of which people often speak between living and existing – an invisible, intangible and yet undeniable line over which the simple matter of getting through the day becomes the be-all and end-all of one’s ambitions. I am not entirely sure I have reached such a line yet, but for the first time in a long while it has become more to me than a mark on a road map which I may be approaching. Rather, it is now a hazy, not-so-distant shimmer which presents itself as being not as far away as one would like or hope it to be.
At the end of last week, K and I made the executive decision to take ourselves back to Chez Parental in order to afford K more time to study for her college finals in a 2 weeks’ time and prepare for her uni interview without having to look after me and without me having to worry about whether she was spending too much time on me and not enough on herself (something at which I am incredibly bad at – I spend most of my life worrying that she’s worrying too much, which is a vicious circle in itself).
My mood, however, has not taken to the holiday particularly well. I have no idea if it is purely coincidental, or if coming home carries an air of admitting defeat or some other such nonsense, but since settling back in here I have been distinctly more negatively-focused and have noticed the difficulties over-and-above the advantages.
Interestingly, I don’t think it’s particularly anything about being home, but more a reflection of the general difficulties I’m struggling with physically at the moment. The biggest problem I’m facing is one of discomfort – I find it almost impossible now to be comfortable in any position at all.
Lying down is fine enough, but only if I am truly horizontal, which makes doing anything at all nigh-on impossible. From there, there is lying propped up, which stresses my lower back and neck, there is sitting up, as on a sofa, which stresses my neck to the point of causing headaches and my upper back and shoulders causing breathlessness. Sitting bolt-upright in a well-supported armchair is about right, but if the back of the chair is not vertical – like the study chair at home – my neck once again takes the strain if it is not supported or rested back.
When sleeping is a problem, it can at least be countered with good periods of solid rest during the day. But when solid rest is completely unachievable – when it is impossible simply to crash out on the sofa and watch mind-numbing TV or brain-absorbing DVDs – lack of sleep becomes just as debilitating as a lack of breath.
When all of these factors are totted up and combined with headaches, odd, unidentifiable but frequently worrying chest pains, cramps and stomach aches on top of it, life becomes a roller-coaster of moment-to-moment misery through which you ache to enjoy that odd glimpse of sunlight glinting through the clouds.
That’s not to say I haven’t enjoyed glimpses of golden rays in the last week, nor that the world is entirely shrouded in blackness, but compared to the fights and struggles I’ve had before, this one certainly feels like it’s ramping things up a notch.
I’m not entirely sure what the point of all the above is/will prove to be, other than a manner of half-an-hour’s distraction in the early hours of the morning and an outlet for all the mixed up frustrations which are mixing themselves up in the pressure-cooking wash-bowl of my head. The dregs of an active, lively mind are swilling around up there somewhere, drained of colour and vibrancy by the hour of night and relentless, restless energy.
If nothing else, I suspect this will go to show in the weeks to come the extent of any improvement on my part. I can only hope that it marks the nadir of my fortunes and that things are all-the-way upwards from here. If not, this is going to be a pretty hard place to visit.
Well, someone was listening to me last night, because today has, indeed, been a better day so far. That’s not to say things are all fine and dandy, or that the picture is yet all rosy, but side-by-side with yesterday, today has been a Good Day.
I managed to get almost straight to sleep last night, sometime after 11pm, which is rare forr me these days. Not only that, but I managed to sleep quite solidly, too – no constant waking to switch position or readjust myself. It may have been thanks to having fiddled with Neve and pushed the pressures up ever-so-slightly, or a slightly improvement on the chest front, or simply thanks to complete exhaustion and my body not having any other choice but sleeping it off. My guess would be it was a healthy mix of the three.
Bizarrely, and somewhat annoyingly, I woke up bright-as-a-button(ish) around 5am and couldn’t get back to sleep, no matter how hard I tried. I had planned to lay in a bit today and do my morning dose a little later than usual, but given that I was awake anyway, I decided to switch the plans and get up early and get them out of the way, which would have the knock-on effect of allowing me an earlier night tonight.
I got up, got my dose running and sat myself a the computer to surf around and catch up on the over-night writers’ strike news, during which time my chest was doing all kinds of weird things, making me breathless one minute and fine the next, and I developed a bit of a killer headache.
By the time my drugs had finished, I decided it’d be a good idea to try to get some physio out of the way before I got myself back to bed, so I did another very uncomfortable session – very hard work again. Having said which, I definitely felt the benefit afterwards, even through it didn’t feel like I’d cleared a lot. I did my anti-biotic nebs and then took myself to bed around 9am.
Interestingly, for those who keep tabs on this sort of thing, 9am is also the time that the construction workers begin work on resurfacing the road outside the front of where we live. With the sun beating a nice, hot set of rays down on the bedroom window, keeping them shut was out of the question, so keeping the noise out was also not a part of the plan.
As it happened, noisy as they were, I needed sleep more, and I managed to doze on-and-off for another few hours till the early afternoon.
I rolled out of bed feeling much better for the physio and sleep, grabbed a cuppa with K and chatted for a bit, talked to my ‘rents to catch them up on over-night progress and then headed back for more physio. It was a much better session than this mornings, and much easier, too, making things look brighter already.
After physio, I got some calories down me and then headed back to bed to chill out with K and watch the first ep of the first season of 24 – a season I’ve seen but K hasn’t and is next on our TV-DVD marathon. I’m amazed at how much I don’t remember from the first time it aired, and also at how much of what I do remember they’ve crammed into the first ep – there must be a whole heap more that I don’t remember to come, which is promising.
After chilling in bed for a while, K gets up to do some more revision and I sit and read GQ for a while, before K heads off to college and I do my 3rd physio session of the day. I’m determined to crack the back of this while I can.
Physio out of the way, I jump online for a while and do a bit of Chrimbo shopping (have to bow to the inevitable eventually, I suppose) and look into a couple of other random bits and pieces while the Shepherd’s Pie Mum made me yesterday cooks. I sit and eat it while watching the last episode of Extras from the DVD that I’d never got round to seeing, then wash up and get back to the study, going over a couple of old scripts till K gets home.
We watch some programmes from Sky+ and I do some more physio (a really good late-night session, actually), and before I know it my evening drugs are all done and it’s time to hit the sack. Things are still very up-and-down, and I suspect they will be for a good few days yet, but today’s been a massive improvement on yesterday, and that’s a big step forward. Well, at least a little one.
Today has been, hands down, one of the hardest days I’ve had in a very long while – harking back really as far as my admission in June, where every day was a challenge.
Luckily, the benefit of hindsight and such tells me that it’s not quite that bad – one horrible day in a week can’t possibly be as bad as one passable day in a week – but it’s only thanks to a little bit of let-up in the relentless onslaught of tiredness, breathlessness and exhaustion that allows me an ounce of philosophy in my outlook.
It started, oddly, not too badly – I woke this morning having had very little sleep but not feeling too bad about it. I clearly had a lot on my chest, but was also managing to get quite a bit off just by being up and about. Early mornings are usually the time when you find out what kind of crap is on your chest, since the very process of getting up and moving around tends to make you cough and splutter, which in turn lets you see a) how productive you are b) how easily it’s moving and c) how out-of-breath it makes you when you do.
I was moving stuff pretty easily, although it was exhausting to cough and my throat was still causing problems with getting the big lumps up. (Nice, I know, but this is a full-disclosure blog, so if you don’t like it it’s not for you, I guess!). Having got my morning dose of drugs out of the way, I crawled back to bed feeling breathless but not too bad.
I woke again around 12.30, later than I’d planned and wanted to. With a 2.30 appointment in Oxford, I’d have to be out of the house in under an hour, so would need to pick and choose the most important elements out of bathing, dressing, eating, doing physio and doing nebs, as well as getting my things together for the Oxford trip (it always involves taking a book things as well as my physio-helping device, which all need to be collected into a bag – it may not sound like much but believe me, it was a task-and-a-half today).
I settled on food and nebs being the two most important things, so threw on some clothes in a very slow and deliberate manner and made a sandwich, which I sat and munched before doing a neb and collecting my things, all of which filled the next 45 minutes and made me incredibly, uncomfortably breathless.
At Oxford things didn’t improve a whole lot. My nurse changed my port needle, which was fine with the exception of the bioclusive (clear plastic) dressing pulling off a good chunk of surface skin by my under-arm area, which was then healthily swabbed with alcohol prior to the insertion of the new needle. Yes, it smarts.
My physio session was really, really hard work – harder than I’ve had for a long time. I was breathless, tired and my airways were irritable and not playing ball, the gunk on my chest refusing to be moved around and brought up, so it felt like we weren’t really achieving much.
Seeing as I’m now sliding into my 4th week on IVs, the team wanted me to check in with the Doc to see if they wanted to do anything different. I’m loathe to change anything at the moment for several reasons, partially because I believe that once I’ve kicked the cold the drugs will do their job, but mostly because any change in IVs is likely to mean switching to one that I don’t get on with quite so well, which in turn would mean that they’d have to have me in and on the ward for a few days so they could keep an eye on me. I’m not keen on the ward at the best of times, but when I’m not getting a whole lot of sleep at home, it’s even less appealing because I know that I won’t get any on the ward.
While I was waiting to be fitted into the doc’s queue, I had another fantastic session of physio with the wonderful back/neck specialist, who worked me over really well. She did what she calls “mobilizing the joints” followed by “mobilizing the soft tissue”. One of the nurses said that the soft-tissue stuff looked like a massage to her, but the physio helpfully pointed out that the big difference was that massages are pleasurable.
Neck attacked, I popped across to the clinic to catch up with the doc, who reluctantly agreed to give the drugs a few days to see if they can kick in after the cold. We agreed that if things are no better by the weekend, then I’ll be straight in. If I’m picking up they’ll leave me out and check my progress after the weekend and we’ll see where we stand.
By this time it was well after 4.30, which meant a slow journey home in the evening traffic. We made an executive decision to take the scenic route which, although dark and not at all scenic, would at least guarantee that we’d be back inside an hour and a half, which is impossible to be sure of if you take the A34.
Back home just after 6 I was completely exhausted, to the level of a childish sense of having no idea what to do with myself. Every single part of me wanted to go to sleep, but I knew if I did I would have no chance at all of getting to sleep. Instead, I sat myself in the study chair to be as comfy as possible and surfed the ‘net for a while, before hopping into a bath to try and freshen up a bit.
It worked – to a limited extent – and we then managed to get through our usual Wednesday night where our bestest bud Dazz pops in to catch up on a Sky+’d ep of Entourage (our guilty pleasure) followed by this week’s Heroes.
With those out of the way, I didn’t have much else to do with myself than dump my exhuasted, knackered, b*ggered old body in the sack and pray for a good night’s sleep. And while I was there, I put in a small request to have a better day tomorrow, please, too.
I’m feeling awful at the moment – my cold has hit with a vengeance and is dragging me down big-style. Most irritatingly, it’s gone to my throat, which makes clearing all the usual gunk off my chest incredibly hard as a tickly cough makes doing good-quality physio almost impossible. Coupled with that, obviously, the gunk that is there anyway (which isn’t getting cleared) is now getting thicker and heavier and nastier with all the cold bugs in it, too, which is making breathing and life in general incredibly hard. It’s basically one great big heap of can’t-breathe-very-well, feel-like-cr@p, need-to-sleep-for-weeks poo.
Of course, me being me, the easiest and most obvious course of action is also the one that my body objects to the most, namely sleeping. Because of all the rubbish on my chest which I’m not clearing, I’m loaded up with stuff which is making breathing hard anyway, but as soon as I try to go anywhere near horizontal (or even just slightly leaned-over) it all starts rumbling around even more and giving me even more problems.
So last night I managed a grand total of about 2 hours sleep and that was taken pretty much because my body literally couldn’t keep my eyes open and my brain turned on any more. No matter what position I was in I would be in some form of discomfort, which was either back pain, shoulder pain, chest pain or all three combined with inability to breathe. I tell you something, struggling to breathe on a machine that’s suppose to help you breathe is not a pleasant sensation.
So last night wasn’t good and this morning wasn’t much brighter – what with the distinct lack of rest and still rumbling chest.
I have, however, made it through to the afternoon now and things are brightening up ever so slightly. My biggest problem has been getting comfortable, as whenever my breathing becomes a problem now it causes all sorts of chain-reactions through the rest of my body, specifically back and neck pain which makes sitting in most positions either painful or hard to breathe.
Most annoyingly, it’s the positions you would imagine to be the most comfortable that I struggle with the most – sitting on the sofa causes huge neck pain, sitting in bed causes lower-back pain and breathlessness and sitting in the comfy chair in the living room causes one of the two, depending on how I sit.
Ironically, sitting bolt upright in the desk chair at the computer is currently my most chest-friendly position. I’ve been in front of the screen for a little over 3 hours now and I’m feeling the best I have all day. I suppose there’s no excuse for me not being productive, is there? Although my brain isn’t entirely switched on at the moment.
Anyway, I thought I’d take the opportunity to catch up on some online diarizing and catching up on the US Writer’s Strike, which has got me bizarrely hooked.
I’m hoping a better day, a better throat and some better physio means that I’ll be able to get better sleep tonight and things will duly improve tomorrow. The resurgence of the cold has coincided once again with the scheduled end-of-IVs, so I’ll be back at Oxford tomorrow but look set to continue into a 4th week of the mega-drugs. Better than ending up feeling even worse and going back on them in a week or two anyway.
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.