Archives: Hospital

So I’ve managed to get myself into trouble with… well… everyone this week, although I personally blame K for it, since it was her status update on Facebook which drove the minor frenzy on Wednesday.

Following my extremely positive annual review at Harefield a couple of weeks ago, Doc C lined me up to have my port-a-cath removed – that’s the small venous access device that sat under the skin on my shoulder and was used to pump my regular IVs into me when I was on them every few weeks, less painful and much less hassle than having longlines and cannulae.

Anyway, Doc C is really happy that I’ve progressed enough now that it can come out, basically saying that I’m not going to need IVs again, that to all intents and purposes, I’m “better”.

To my surprise, having thought it would take at least a month or two to sort out a port date, they phoned me last Thursday and arranged for me to come in on Wednesday and have it taken out by one of their surgeons – and who says the NHS isn’t fast?

So off I toddled, with Dad driving as I wasn’t too keen on ferrying myself back home after having my shoulder sliced open, own to Harefield on Wednesday morning, fully expecting a quick and painless procedure under a local anaethetic and then to be shipped off home.

Upon arrival and talking to the surgeon, however, i became clear that there was a large possibilty of the line causing problems with bleeding etc during the op, so he wanted to knock me out under general anaesthetic so I wouldn’t have to put up with the rather over-dramatic process of fixing things up once he’d cut me open.

Of course, the time before last that I ad a general, I ended up on intensive care – nothing to do with the anaesthetic, mind you – but this set alarm bells ringing for K, who posted an update on Facebook saying she was worried about me and my op.

Having thought it was only a minor, local thing, I hadn’t actually told anyone about going in to have it done, other than my ‘rents and K’s and the people I was supposed to be meeting with that lunchtime.  So, naturally, everyone who read the update panicked and starting sending all sorts of (lovely) concerned messages to K to find out what was going on.

I thought I’d help matters once I was straight-headed again yesterday by posting my own update apologising for not telling people.  Only then it got read by all the people who’d missed K’s status update and so still didn’t know, who then got the same level of worriedness about something that had been and gone and I got plied with even more (lovely) concerned emails and was once again berated for keeping it to myself.

So, for the record – apologies to everyone that I didn’t tell you it was going to happen and apologies to those people who we worried by not explaining ourselves properly.

Also for the record, everything went fine, there was no extra bleeding and my mini-lifeline that’s been in situ for over 13 years slid out nicely under the surgeon’s deft hands and now, presumably, lies in a pile of ash at the bottom of an incinerator.  Weird thought.

My shoulder is still pretty sore – hadn’t really thought that one through ahead of time, but it’s a bit obvious really – but I’ve got good painkillers to deal with it and I’m now able to walk about and generally use the arm, which is a good deal better than yesterday.

I solemnly swear from now on that any and all procedures that I know about in advance will be adequately diarised on here BEFORE they happen so that we don’t freak anyone else out.

Sorry.

One year ago, precise to the nearest hour (rounded up), I sat as I do now sitting up in the middle of the night while all about me are sleeping.  That night, 366 days ago (leap year, before you correct me), I wrote:

“I can only hope that [this new low] marks the nadir of my fortunes and that things are all-the-way upwards from here.”

as part of this post.  Little could I know that within 24 hours everything would have changed and that what I was writing then would prove to be so eminently prophetic.

I don’t know quite why I am unable to sleep this time – I know, thankfully, that it’s nothing to do with the intense physical struggle I was fighting a year ago, nor is it a concern about how imminent my death may prove to be – but I suspect that it’s the knowledge that a year ago today marked the point at which one person’s life ended and gave me the second chance I had craved.

I’ve never really struggled with the idea that for organ donation to be viable, the donor must be deceased – certainly in my case.  But something about an approaching anniversary makes you re-assess things you take for granted.  I suppose it’s why New Year brings so many resolutions.

More than that, though, I suspect it is the knowledge that over the last 12 months I’ve seen two friends lose their lives in the way I always imagined I’d lose mine and – just this week – a very close friend lost his 14-year-old son.  Standing on their doorstep to offer our support and help in any way we could, their grief was over-whelming.

I have been much blessed in my life, not least in that I have never lost anyone of my immediate family at an age where I was aware of the pain it caused all those close to me.  I’ve never fully appreciated the wrench, the true sickness inside, of losing a member of your family.  Of course I remember my Nana – just barely – and my Granddad, but I have no concept of their deaths when I was 3- and 5-years-old.  I remember more clearly the death of my Grandmother two years later, but only in as much as that Daddy was sad and I wasn’t allowed to go to the funeral.

Never before have I touched – or been touched – by such heavy, all-enveloping grief that weighs on the family like a leaden cloud, which rains down tears of desperation and confusion without any seeming hope of the oft-fated silver lining.  A grief which swallows people up and prevents them from seeing anything around them, or even in front of them.

It occurred to me, sometime after that doorstep encounter, that while my family and I were rushing to hospital a year ago this evening, another family were in the very first stages of just such an overwhelming feeling of loss and despair.  And now, one year on, they must be thinking back to that fateful day and wondering if anything more could have been done.

As I’ve documented on here previously, I know nothing of my donor, nor their family.  I can only imagine the circumstances under which they came to be in a position to save my life and mere conjecture is all I can muster towards how they dealt with it at the time.

As I prepare to celebrate the first of my second birthdays with a party on Thursday night, I am overcome with the thought of the loss someone has had to suffer for me to be here.  All I want is to know that whoever my donor may have been, they are smiling down on me now and are proud of what I have achieved since they gave me a second chance.

I want to know that they believe I am worthy of the gift they have given me, that I have done my best to make the very most of the lungs they bequeathed to me and that if they could, they would be telling the ones they left behind that I am fit to carry on in their stead.

19 November will live forever in my mind as the day my donor died, quite separate from 20th November – the day my new life began.  And I’m grateful to have the two separate days to honour – the one to mourn the passing of the person who saved my life and the second to give thanks for the life I’ve been given and to surround myself with my family and friends who make it all worthwhile and make me feel worthy.

I heard a quote from Nietsche on the radio today,

‘He that has a “why” to live can deal with almost any “how”‘

With the knowledge of the sacrifice that was made in my name and a determination to be the best I can be, “how” I live will never be an unconquerable hurdle, merely a method of honouring the “why”.

Today has been a pretty impressively brilliant day.

It was another Harefield appointment, my first in six weeks after MC told me that it was a bit pointless coming back until they had clear data on whether my CMV had retreated for good or not.  So he had sent me away with instructions to send in bloods every 2 weeks to keep a check on things and that if I hit the 3 month mark with no adverse effects or without showing anything above a zero on my CMV then he’d take me off the Valganciclovir I’ve been on since May and see if my body will cope without it without submitting to CMV again.

Seeing him today with a month-and-a-half of clear results, he was suitable pleased and happy for me to drop my Valgan and continue with everything else, albeit being very much more aware and careful about the first signs of CMV infection, necessitated by the fact that CMV can very rapidly kick-start rejection of the not-very-good kind, which could do my serious damage.

That said, though, he came out with something I wasn’t expecting to hear at all.  Although I may feel like I’ve had a fair number of blips, he thinks I’m doing incredibly well and – going by his experience of CF patients post-transplant – thinks I now stand a better-than-average chance of 5-year survival.

At the time of my transplant, I was quoted statistics saying that 73% of people make it through the first year, and within that 27% that don’t are included people who may die on the table or suffer serious post-operative complications.  Once you stretch the survival period to 5-years, the odds stand at 50/50, but MC now believes that for me the benchmark can be shifted from 50/50 at 5 years to 50/50 to make 10 years.

Another decade of life is better than I think many of us dared to hope.  I said before my transplant if I’m given just six months of a new life I’d be happy.  Time enough to play with my Godsons, experience the things I’d not been able to do for breathlessness and lack of energy, learn to do things on a whim again.  Having slipped past that stage back in May, albeit in the middle of a CMV/EBV attack, I’ve felt contented with my lot, whatever is thrown at me next.  To know now that there’s a very real possibility of a future worth planning for is too incomparable for words.

I’m aware every day that someone, somewhere has lost someone they loved very dearly.  I just hope I can make enough use of the extra time I’ve been given to show them what a truly wonderful gift they have given not just me, but my family, too.

Under pressure from outside sources (no names, Lisa), I have forced myself to my desk to write an update.  I had – honestly – been intending an update for a while, including some back-dated film reviews (it’s been a busy week on the film front) but just haven’t seemed to find the time to do it.

My energy is still coming in fits and starts.  After a busy and productive week last week, this week has been a little more relaxed and less work-focused.  The new issue of CF Talk is taking shape, but is now at a stage where I’m waiting for our writers to draft their articles and send them in, leaving me without a great deal to do other than sit and wait.

Live Life Then Give Life is going from strength to strength since our charity registration came through and there are a number of projects being mooted between us as I speak, sadly none of which I’m at liberty to disclose just now.  If you live in the Manchester area, though, what this space over the next couple of weeks because we may have something exciting to announce.

I have also got myself back on the writing wagon, having taken my Headliners screenplay up to 40 pages and still going, which had really excited me as I whenever a hospital is around and about I seem to lose a great chunk of my creativity and imagination.

In fairness, I suppose it’s not the hospital so much as the condition I’m in.  After all, if a hospital stay is called for it means I’m not doing well and if I’m not feeling well then, as has always been the case, my creativity and artistic expression is the first thing to go.

Next week I’m due to give a speech at the Ipswich Press Ball about CF, which I’m really looking forward to – black tie events always excite me, mostly because the old performer in me loves getting dressed up and being the centre of attention.  Unusually for me, I have actually written my speech this time.  It’s not long, only a couple of minutes, which I would normally busk my way through relying on my natural charm, wisdom and eloquence, but clearly my faith in myself has deserted me.

Actually, quite apart from this being a posher and more official deal to the kind of speech I’ve made in the past, I also had some strong ideas for the speech that I didn’t want to lose in the weeks building up to the speech.  In the process of getting my ideas down on paper I got carried away and ended up writing the whole thing.  After the ball, I’ll pop the text up on here for you all to peruse and tell me where I went wrong.

Other than that, not much has been happening, really.  Although looking back over what I’ve just written I realise I started by saying I’ve not been doing much but have now clearly proved I’ve actually been quite busy.

Next week is hopefully dedicated to CF Talk and preparing articles for submission to the designers, with a short break away in Ipswich at my Godfather’s place for a couple of days of proper chillage before the Ball.

Promise I’ll have more updates on the boring things soon, and won’t leave it so long.  Mind you, how often have I said that…?

Another trip to Harefield yesterday, this time just for a clinic visit. Was all a bit silly, really, since by the time they saw me in clinic they hadn’t had my blood results back, so they didn’t know if they needed to change any of my meds or do anything else, which meant the whole visit was a bit pointless. Apart, I suppose, from the fact that they can at least look at the blood work today to see if anything troubling has come up.

The last couple of days have been pretty busy and I’m feeling it catch up with me today. It’s a very odd feeling, different to my rest-periods from before. I can have a couple of days of being very busy and working flat-out, but then need to take a day off, but it all seems a little unpredictable at the moment. Before my op I had got used to the fact that if I did something, the next day would have to be a rest day. Now, though, sometimes I can get away with doing lots and other times it seems like I need to rest more than usual.

I’m sure this is all part and parcel of the recovery process, coupled with the fact that my body is still working it’s way back to full strength after the virus double-whammy of last month. What still boggles my mind, though, is that even when I’m tired and need a bit of rest, I can still do things. Before the transplant, if I was tired it was an all-encompassing tiredness that wouldn’t let up until I’d slept it off, no matter what time of day or night it was. Now, it’s more of a general slow-down – everything just takes a little longer and I don’t feel as sharp as I was, but I’m by no means bed-ridden.

What’s funny is that I kind of assume that this is the general “normal people” kind of tiredness, but since I’ve never experienced it before, I’ve no idea if it’s a “normal” thing or not – whether I’ll get used to it and stay like this or whether it’s a transplant thing that will change in time.

There are so many things to learn about a new body post-transplant that go way beyond just getting used to having breath in your lungs. I’m getting there, slowly but surely, and learning new things everyday. Even six months on, it’s still a journey of discovery and it’s still as exciting now as it was when I took my first steps back to my room on the ward.

It’s taken me a while to get around to writing about my admission for two weeks almost a month ago, but that’s because I’ve still not really managed to wrap my head around the whole deal.

The two weeks I spent on the ward in Harefield in the middle of May were the hardest two weeks of “inmate” time I’ve spent for a long time and I’m not entirely sure why. Perhaps it was something to do with being on an open ward, something I’ve only experienced once or twice in my life, despite numerous, often lengthy, hospital admissions. Perhaps it was because I was missing out on the holiday with a big group of friends that K and I had been planning for close on 3 months.

Above everything, though, I think I struggled more than I have for a while because something in my brain told me I was passed all this. My new lungs have had an amazing start. A minor hiccup after 2 weeks not withstanding, they’ve gone from strength to strength and my lung function has been steadily rising, my exercise tolerance going with it. I even completed the famed last mile of Tresco with my brother and started entertaining thoughts of doing the whole thing next year.

So I suppose I had kind of taken my eyes off the post-transplant complications ball and started to enjoy life without a second thought for whatever else was going on, assuming everything was tickety-boo. Which is, I suppose, a lesson in itself. While new lungs mean great new things, you can never take their health for granted and even though I’d been booming for the last three months, it doesn’t take much to send the body reeling.

The chest pains I’d been worried about were initially diagnosed as Gastritis, but when I saw the team at Harefield I had managed to spike a good-looking temperature to go with the pain and nausea, leaving them little choice but to admit me. For the first 24-48 hours the cause of my ailments seemed a mystery to the docs, until they got my CMV count back, at which point they were more contented, knowing that they knew how to deal with it now that it had been properly identified.

There’s something disconcerting about being given drugs intravenously which are so toxic the nurses have to wear gloves and the pregnant women aren’t even allowed to touch the packaging. Knowing they can’t go near while you watch it being pumped into your veins is pretty bizarre and something I’ve never got used to, despite a history of high-caliber potions in my time.

When I was moved to the open ward, which happened to coincide with K’s departure on the holiday with our friends (at my insistence, I must add, and under considerable duress) and I dropped into a pretty deep funk. It’s the lowest I’ve been since the darkest days of the early post-transplant period and there didn’t seem to be a whole lot going for me at the time.

I’m slightly ashamed of myself now for letting it all get on top of me so much, since at the end of the day I was still a good deal healthier than I had been not 6 months ago, but for some reason (or, I suppose, a myriad of reasons) I couldn’t raise my spirits at all.

Luckily, at Dad’s suggestion, I managed to secure a weekend release while the guys were all away. The ‘rents agreed to drive me in for my doses of anti-biotics twice a day, but I was free to go home for food, rest and over-night sleep, something I’d been getting very little of on the ward, what with the world’s loudest talker on one side and the telly addict on the other.

Eventually, thank goodness, my consultant, the amazing Doc C returned from his paternity leave in the middle of the next week and on his first round of the day told me I was free to head home as they expected my viral load to be low enough to no longer necessitate the use of the IV drugs, enabling a switch to the more home-friendly orals.

I hadn’t been happier than that afternoon when I got back to the flat just after K returned from the holiday and we could just chill out on the sofa and enjoy each other’s company again after nearly a week apart – pretty much the longest we’ve spent away from each other since we got together.

Getting used to the ups and downs of transplant is clearly taking me longer than I thought it would. My mind appears convinced that things can only go well, so any minor hiccup is a bigger deal than it ought to be because it carries with it something of a heavy shock value. I need to keep reminding myself that it was only 6 months ago that I had new lungs fitted and that I still have a way to go to fully recover, however good I may feel right now.

So I’m trying to take things a little more slowly, although how long that will last we’ll have to wait and see. The main thing for me at the moment is doing what I can to avoid what Doc C affectionately calls the “Superman complex”, whereby people (mostly men) post-transplant start to see themselves as indestructible and slacken off their meds and treatments. It’s hardly the way to say thank you for the greatest gift of all, so I’m determined to stay away from it and keep myself at my best.

It’s Oli, back again after my enforced 2 week absence.

This is only going to be a quick one, though, to shout out loud to everyone that I FINALLY ESCAPED.  I don’t know why, but the last two weeks have been two of the hardest I’ve experienced in quite a while.  I know the immediate post-op period was harder, but other than that, this has been the toughest hospital stay I’ve had in a long while.

I’ll try to write a fuller update and coverage of the last couple of weeks sometime tomorrow, but for now I just wanted to thank you all for your lovely comments, emails and text messages and to let you know that I’m very thankfully out in time to enjoy this weekend properly, feeling much better if a little tired from the lack of sleep in the Big House.

Hope everyone’s well, more updates soon.  And thanks to K for her updates again!

Hi, this is K, Oli’s parents have gone away to Luxembourg for a week so to coincide nicely with that Oli has landed himself back in hospital.  He did the same thing in January when they went to Rome.  If I were them, I’d be a little concerned about booking any more holidays!

Oli has gone in today because his stomach/chest pains haven’t really gone away, they kept him there because he decided to spike a temperature as well, I think I’ve said before that if Oli is going to do something he’ll do it well.  It shouldn’t be a long stay for him, the main aim is to get him re-hydrated (he hasn’t eaten or drunk anything for a few days due to pain), get his temperature down and they’re giving him some anti-biotics as a purely precautionary measure.  Blood cultures should come back in the next day or two and they’ll tell if he’s growing anything but the general opinion is that sleep and fluids should make Oli a happy boy again.

In other littler news, a few of you might like to know that I got accepted to City University yesterday to start a Speech Therapy degree in September, I am ridiculously ecstatic and thought you might like some happy news to temper the hospital news.

I’ll fill in with updates once results have come back from blood tests, etc.

This morning I was rudely awoken by one of my old CF nurses (not that she’s an old nurse, but old as in don’t-really-see-them-any-more – sorry Cass) arriving to flush my port – a quick and simple injection-type thing to keep the permanent IV line in my shoulder patent should it need to be used again, which – touch wood – it won’t.

It’s been over a month since I last saw any of my CF team, which is a bizarre thought and feeling given how much of my life was taken up by visiting, calling and staying in touch with them over the last few years, increasingly so in the year leading up to my op.  Since I last bumped into them (which, actually, was the first time since the Tx) three of the team have run the Reading half-marathon to raise money for my old unit, which they managed to do to the tune of nearly £3,500 – impressive, to say the least.

Cass is now fully addicted to running and is well up for Reading again next year.  After my trip to Durham and Stephen’s rampant encouragement to join them in a half-marathon and then the full distance, I can already hear my brain ticking over the possibility of joining the team to run it with them next year.  It’d be an amazing story, I reckon: ex-patient (well, technically not “ex”, but not really massively dependent on them any longer) joins former clinical team to run half a really long way (which is still a really long way, interestingly) to raise money for the unit and the patients still being treated by them.  Not that I’m always looking for the PR angle, of course…

Anyway, it was great to see Cass and catch up on the goss from the unit and what everyone’s up to – particularly all those who’d had the audacity to shoot off and drop sprogs before my op.  I’m happy to say that they’re all doing really well, even the ones who aren’t sleeping due to badly trained offspring.

Following my port flush (and I must apologise to Cass again, as she didn’t really wake me up and she did bring breakfast with her…) I pottered around the house, flicked through the new copy of GQ which had dropped through the letter box this morning, then woke K for a quick trio to the hospital to return a pain machine which she’d had on trial.  It did absolutely nothing for her, so it was quite a quick appointment, following which we headed straight home.

Mama K was in the area with a friend, so they swung by for a cuppa and, in the spirit of the day, brought cake with them, too.  We sat and chatted and caught up (it’s been too long since we saw her) and K used the opportunity to show off her new smoothie-making toy.  It’s become a bit of an obsession this smoothie-making lark, ever since we picked up the Braun blender-on-a-stick thingy at the raffle in Durham.  They’re not really my cup of tea, but it’s a quick and easy 2 or 3 of K’s 5-a-day, so who’s complaining?

After they left, I sat down to the computer for the first time in anger in over a week and started to plough through my emails and catch up on a whole host of stuff I’d fallen way behind on, followed by having a blitz of the various piles of post that were laying around the study and clearing the backlog in a not-unimpressive way.

When she finished work it was my mum’s turn to swing by for a cuppa and a catch up as we’ve not seen her for ages either.  I saw my Dad on Monday when I popped home for the washing, which has left my dear mother feeling somewhat left out.

When she left, after a decent catch up and news-swapping, I jumped back in the study to carry on clearing until another friend turned up to pay up his holiday money for May, which K and I have organised.  We chilled and had another cuppa (starting to sound like Right Said Fred, this), then K cooked and I ate dinner, followed by washing up and a little more chillage on the sofa.

I’m off now to catch Episode 2 of the Apprentice, which always manages to hook me, not matter how dense and useless the candidates appear to be.  Or perhaps precisely because they’re so dense and useless.  Either way, my body is screaming for an early night and for once, I’m not going to argue.

Around September/October last year we – as a family – decided that we’d grace my Godfather and his family in Ipswich with our presence at Christmas. They did invite us, it must be pointed out, we didn’t just decide we were going to descend on them and then inform them of their newly arranged festive plans. We were all looking forward to it – Mum because it meant she didn’t have to cook, me because getting away anywhere was a bit of a treat at the time, epic as it was to shift all my kit from place to place, K was positively brimming at the prospect of swimming on Christmas day.

We all know how that turned out, of course (or if you’re that much in the dark, check out the blog entry for Tuesday 20 November to get abreast of my detour), much to everyone’s consternation, not least Mum’s as it meant she not only had to cook, but subsequently take me to hospital while hurling my insides up on Boxing Day, lucky lady.

I jest, of course, being as we were all delighted to have the world’s greatest Christmas present thanks to the generosity of one family and their amazing loved one who took the time to sign the ODR. That being said, my lovely “Auntie” Norma has not stopped chiding me since my op for abandoning them over Christmas.

As wonderful a Godson as I am and as much as they berated me, it’s taken me until the end of March to find the time to take out and go to see them all. Mostly, that’s down to the hospital visits being way too regular to get over to Ipswich and back across to Harefield and enjoy anything of a stay there. In the end, once the docs decided they were sick of the sight of me and told me to go away, I managed to phone Norma and let her know we would be imposing ourselves for the week this week.

Best laid plans and all that, the week turned into 3 days after I planned a CBT on the Monday, which was (as you may have read) snowed off and switched to Friday, meaning we’d need to return from the East on Thursday night for me to make the 8.30am start.

Still, 3 days is better than nothing at all and it was a wonderful opportunity not only to see them all for the first time post-op, but also to get some good gym work done in their fantastically appointed gym and swimming pool, which has recently been complimented with a gob-smacking spa complex to boot.

So after a mad morning of rushing around trying to get a prescription done last-minute (because I’m a womble and I forgot), we set off and headed down/across/up/whichever way Ipswich is and found our way there after only going wrong once (quite an achievement considering the tiny, twisty, back-country lane they live down) – and that was on the main road, too.

After chilling out a little, it wasn’t long before my Godfather, ex-Army man that he is, had me bashing the treadmill to show him what my new lungs could do. They held up admirably to the strain, I have to say, Graeme working me harder than I’ve ever worked on these lungs and although I felt like I was just about to be flung full-force backwards across the gym by a treadmill turning way too fast for my ever-weakening legs, there was actually an amazing sense of accomplishment afterwards.

It wouldn’t have been a visit to G&N’s without a quick dip and K had me in the pool no sooner had we finished in the gym, K proudly sporting her new swimming leggings and imploring me to teach her how to swim, completely over-looking the fact that the last time I’d been in a pool was quite possible over half a decade ago and the last time I’d had anything approaching a lesson I’d still been shy of single digits.

We swam all the same, and took advantage of the gorgeously relaxing rainfall shower in the spa before drying off and heading in for dinner.

Best part of the day, though: hands down the after-dinner retirement to the top floor cinema room, with drop down screen and Blu-Ray projector with U-shaped super-comfy sofa on which we settled with tea, cake and biscuits to watch Atonement, an amazing flick which is one of the few adaptations I’ve seen in recent time to do their literary counterpart justice. James McAvoy is remarkable and Keira Knightley very good, but it’s director Joe Wright’s grasp of the subtlety of emotion and deft handling of the varied viewpoints and tricky time-lapses which give he film its weight. Some of the choices on dialogue delivery weren’t my cup of tea, but I could acknowledge them as a strong stylistic choice and as such not something to do the man down for, nor was it anything which would spoil the film as a whole.

Suitably buoyed up by the happy-go-lucky flick* we all stumbled off the sofa in the direction of our beds, with another day of activity – not least another gym session – ahead of us.

*not an accurate reflection of the film. It’s more down-beat that something incredibly down-beat with strong undertones of “somber” and a slight edge of “depressing”. But still very good. And surprisingly warm.