Archives: Difficulties

Freedom at last – after a week spent couped up inside despite feeling just as well as I had the week previously, it isn’t half a relief to be back at home and within my own four walls.  Even if I don’t leave them for the next 7 days, it’s going to be a heck of a lot nicer than it has been on E ward this week.

That’s nothing against E Ward, you understand, it being the very best of the best places to be if the docs suspect you’ve something dodgy going on in the new blowers they implanted, but let’s be honest: hospital is hospital.

Interestingly, I didn’t find this 5 night/6 day stretch as hard going as my previous one (just a week prior) – I was fairly upbeat and resilient the whole way through.  I think it largely had to do with the fact that when I was admitted the team let me know straight away that I was going to be in until Saturday at the earliest, most likely, whereas the previous week every day had been a will-they-won’t-they let me go connundrum whic, upon the arrival of the nigh-on inevitable “won’t”, always served to deflate and depress me – getting one’s hopes up in a hospital is a bad plan at the best of times, but when you’re feeling physically fragile, too, it’s never good.

Still, three days of being pumped full of more steroids that the US sprint team and the Tour de France combined have served to set me back on the straight and narrow (we hope) and get me sent home for a glorious span of 5 days before my next clinic appointment.  Getting discharged on a Saturday is usually no mean feat, but luckily for me, my team were on duty this weekend, which meant full access to the key decision makers who could kick me out at will (mine or their’s, I’m not sure which yet).

All I have to show for my week’s stay in the Big House this time is a severe sleep-deprivation hang-over.  One of the side-effects of the Methal Prednisalone (the IV steroid they put me) is sleep disturbance and although I managed through the first night with just a bit of a late nod-off and minor leg-cramps, last night saw me lie awake until 6am before being unceremoniously awoken for my breakfast at 7.45.  Under 2 hour’s sleep does not for a chirpy Oli make.

Still, it’s hard to moan too much when I’m just happy to be out and back home.  Perhaps the total lack of sleep last night – and my managing to stay awake throughout the day so far today – will do me good in getting me off to sleep nice and swiftly tonight.  One can only hope.

Oh, the only other good thing to come from having far too much time on my hands in hosp for the week was a chance to get started on the treatment for my next writing project – a low-low-budget flick about a band on tour which I hope I’ll be able to knock out in quick-time and see about getting shot sooner rather than later.

Of course, like most of the projects that get mentioned on the blog in their formative stages, there is bound to be a mishap which gets in the way of this one at some point soon, but then perhaps this will be the exception that proves the rule.  Watch this space is about the best I can say, I guess.

I’m off to flop in front of the telly to try to stay awake till my last dose of daily immuno-suppressant is due at 10pm.

For those of you who read this in time over the weekend, pick up a copy of tomorrow’s Observer, where I *should* be featuring prominently in a health-article to back up the paper’s continued push behind the Opt-Out campaign.  For those who can’t get out to pick one up (and thus see a picture of my lovely mug) I shall endeavour to post a website link up here as soon as it’s up.

The inside four walls of Harefield hospital are starting to become depressingly familiar.

Don’t get me wrong, it’s a great place, with experienced medical teams who are – in my humble opinion – second to none. But every now and then – just occasionally, mind – I do find myself wishing I could spend more than 4 days in a row at home without getting myself admitted back onto E ward. Or F. Or any alphabetical character’d ward in the place.

Give me my due, though, at least I’m giving the docs a variety of ailments to deal with – Heaven forbid I should make their job dull and repetitive. First off we had high Tac levels, swiftly followed by good, strong infection, chased down with Norovirus with a sprinkling of chestiness and now we have my first official episode of rejection.

Now, I’m assured by people who know a lot more about these things than me that this is perfectly normal within the first year and particularly the first few months and is nothing to be worried about.

My lung function hasn’t picked up since the touch of infection last week, indeed it’s dropped back ever so slightly, and combined with a stubbornly low level of Tac in my blood, the doc’s are left to presume that, what with my infective markers all dropping and me feeling grand in myself, rejection is top of the list of possibilities.

What this means is a wee holiday on the ward so they can perform a bronchoscopy tomorrow (Tuesday) morning to take a biopsy of the lung tissue to have a good look-see.
For those of you who prefer non-medical, they’re gonna chuck a camera down me gob and snip out some bits of me blowers to see what’s causing the hissy fits.

To say I’m scared would be to over-state it – I have a team I trust 100% here and if they say it’s cool I believe it’s cool – but I still can’t escape the niggling reminders that they last time I was knocked out for a “routine procedure” I woke up a day later in ITU on a ventilator and dialysis. Not fun.

Doubtless this is all going to go a lot smoother, but I will certainly be glad to see the ward staff at lunchtime tomorrow and know it for sure.

For the time being, I’m now enjoying my stay in my 4th room on E ward, my 5th room between E and F in the last 2 months and that’s not counting the two spells on ITU.

One day I swear I’ll get to spend a whole week at home with my new lungs. Now that’s gonna be a novelty.

 Update…Oli is fine, just a bit of a sleepy head because of the general anaesthetic.  Unfortunately we haven’t seen the doctors so don’t know how it went but we are working on the assumption that if there was anything serious they’d have been in to see him before now.  Will post news tomorrow once we’ve got biopsy results.   K  x

I’m back.  24 hours back, in fact.  Stupid viruses.

After hurling myself inside out for 24 hours, I managed to stop only to discover it had either caused or masked a lovely little infection, for which the docs started plying me with IV anti-biotics and wouldn’t let me home.  Wouldn’t let me home for 4 days.  Grrr.

Still, I’m back now and basking in the warm glow of a doting girlfriend and freedom to do what I want (as long as it involves sitting spending quality time with K).

Also feeling very excited about the Organ Donor Taskforce report published yesterday (which I would link to, but let’s face it, how many of you are going to wade through 66 pages of Government-commissioned report if you don’t have to?).  Essentially, it recommends a number of not-particularly expensive solutions to current problems within the current donor/transplant network in the UK which they are confident will – if implemented as the Government say they will – result in a 50% increase in the number of transplants in 5 years.

Amongst other things they talk of making assessment for donation the norm, rather than the exception, in end-of-life care, as well as dramatically increasing the number of Donor Transplant Coordinators and retrieval teams, all under the coordination of a central organ donation organisation.

This really is a massive step forward for organ donation in this country and is actually far more important than the possibility of switching to a system of presumed consent, as has been discussed in the news this week.  The so-called “Opt-Out” system may well increase the number of available organs, but without the infrastructure changes behind it, is likely to do very little to actually increase the number of transplants that are carried out in this country.

That said, the presumed consent debate is a fantastic one because it’s getting everyone to talk about organ donation.  If the 70% of the population who say they are happy for their organs to be used after their death all signed up to the organ donor register, there would be no need for an opt-out system anyway.

Other than that, I’ve got very little going on at the moment – keep trying to plan things but having stupid lung-related hiccups getting in the way all the time.  Anyone would think that 8-weeks post-transplant isn’t very long to be trying to get up and about and leading an active, multi-disciplinary lifestyle.  Honestly….

Today was not such a good day.  I’m not 100% sure just yet what it was, but something didn’t agree with me today and I’ve spent the day feeling extremely tired and sick – not a whole load of fun.

Having said that, I did still manage to walk to the local shops and back to get a paper (have to keep up with it because I’m collecting the Guardian’s Army Fitness Regime, which is running all week), which I was really proud of – not least because it was really hard work walking back up the hill but I still did it without stopping.

I did discover a minor downfall/hiccup in my walking plans, though – my body only seems to know how to walk at one pace.  Every time I set off walking, I set off at a march.  Great stuff for when I’m trudging my way downhill to the shops to grab the paper, but not so good when the hill slopes the other way.  I set off out the front door of the shop this afternoon and headed up towards home and within 30 metres I was shattered.  It took me a second recovering my breath at a road crossing to realise that it’s actually OK not to walk flat-out all the time.

Still, even walking at no-100% effort, I still worked up a good sweat and got myself out of breath, which is the main idea of the walk anyway.

As for the sickness, my guess is that it’s down to the charming new drug they’ve put me on, the once-a-week Fosomax (Alendronic Acid), which is designed to counter-act the effect of the steroids I’m on in weakening my bones.  Specifically, according to the leaflet, it’s for “post-menopausal osteoporosis” – my docs clearly neglected to mention that a side-effect of transplant is the menopause.  I’m gutted.

Anyway, if it does prove to be the pills, then at least I know that by the time it’s worked its way out of my system tomorrow morning, I’ll be feeling much better.  It’s only once a week, so I’m sure I’ll learn to tolerate it in the long run, however horrible it might seem right now.

Tomorrow, if I feel better, promises to be a better day, with the potential of a trip to the cinema and/or Borders on the cards it should be a great way to cheer myself up after a dip in form.

It feels like it’s been an age, when in fact it’s only a little shy of 6 weeks since I was last sat here at my desk, my Mac, in my study writing up a summary of my day on the waiting list.  What a lot has changed in those six weeks – what a remarkable six weeks it’s been.

I keep having to catch myself from protesting at how long it’s taken me to get back here, or to stop myself from trying to do things that I’m not supposed to do yet because to me it feels like months that I’ve been away and out of the loop.  It’s been fantastic to receive all of your messages, cards and comments, but they are about the only things I’ve been collecting from my “life”.  I now have 6 weeks of unopened mail to go through (except Christmas cards, which K opened – funny how she avoided the bills…) and an inbox which has just downloaded the 420 mails I’ve received since my transplant and that’s after K had a bit of a clearout not too long ago.

It’s so funny to see myself moving freely, doing things around the house (I’ve been cleaning this evening!) and generally getting on with things in a totally normal and nonchalant manner.  Already things are becoming second nature to me and I don’t think twice about them until I’ve done them and I sit with time to reflect,  or until someone points out just what I’ve done.

I’ve definitely tired myself out today, with a trip to Harefield this morning for bloods, a good, brisk 10 minute walk along the lakeshore this afternoon and then an hour’s manic unpacking/cleaning when I got home tonight, but it feels wonderful to have heavy eyelids and not heavy lungs.

I must add, for those of you thinking anything was amiss – the cleaning I was doing was only because we swapped our bins over and I had to clean off the old one to be used as our recycling bin as the new one is more hygienic for kitchen waste.  K has actually, with the help of our great friend Dazz, completely overhauled the flat and scrubbed it top-to-bottom without missing a single nook or cranny anywhere at all.  All traces of my former life have been whisked out – no Neve, no concentrator, no oxygen cylinders – and the place is positively sparkling.  I can’t explain properly just how hard they’ve worked to make sure it’s ready and bug-free for me to come back to.

The slight downer on the day today (and it is only very slight) is that my Tac level has gone up to 20 again (they’re aiming for 10, remember), and that’s only after taking 3mg, so goodness knows what my body’s up to.  I’ll be off for more bloods in the morning and should get chance to chat to my Tx team about what’s going on and also about the scar pain.  The trouble with going to hospital on a Sunday is that it’s only the weekend cover who are on and you can’t guarantee that they’ll be the Tx team (which they weren’t today) so it’s hard to get things sorted.  Tomorrow should be a different pot of pike, though, and I’m sure we’ll get somewhere with it all.

My walk this afternoon was great – again an amazing experience to get myself out of breath and feel it was my legs that were going to give up before my chest.  In fact, after doing the physio’s exercises yesterday, I couldn’t half feel it in my calves today during my walk.  Note to self: don’t forget to stretch!

New Year’s eve tomorrow and I’m looking forward to seeing in 2008 with a sense of optimism and possibility rather than worrying about what’s just around the corner for me.  Hope you and yours all have a great one and if I don’t blog tomorrow, catch you next year!

So I’ve managed, it appears, to spend a couple of days without sending my Tac levels sky-high and spending all dy hurling, which is nice.  I have, however, managed to do something to my left-hand side, which is causing me a great deal of pain right now.

We think – in our infinite wisdom (read: mildly-educated guesswork between one trained nurse and one former-CF patient, newly transplanted) – that I may have strained the stitches on my internal wound.  Back visiting the flat on Christmas Eve, our little nephew came running into the study to see what we were all gauping at on the computer and without thinking I automatically hoisted him up on to my lap.  We reckon the effort of lifting him may have pulled on the stiches (which won’t have fully healed and dissolved for another few weeks yet) and that’s what’s causing the pain.

The biggest problem is that it’s right on my Lat muscle (the sort of angular one that comes down under your armpit), which means just about any body movement twinges the stiches and gives me a nice, healthy, bracing shot of pain.  I’m dosing myself up with Paracetamol and Tramadol at regular intervals, but it doesn’t seem to be doing a whole lot.

Still, the plus side of all of this is that the pain in my side is literally the only thing I’ve got to moan about.  Everything else is absolutely brilliant – I’m walking around freely, my appetite is fantastic, I’m enjoying my days and sleeping pretty well through the nights.  I’m full of hope and excitement for the New Year and just wondering which of my many possible projects I want to tackle first once I’m up and running.

Today I’ve had a day off from going to Harefield, which was nice as it meant I got a bit of a lie in.  I had a wonderfully lazy Saturday morning lying in bed with K reading the paper and chilling out before I got up and had a nice soak in the bath (which did wonders for the pain in my side). 

The rest of the day has been spent in similarly chilled fashion, watching TV, sleeping a little and doing the mini-exercise regieme that the Harefield physios set me before I left.

Tomorrow, K and I hope to get back to the flat to try spending a few nights there over New Year to see how we get on.  At the moment I’m lucky in that I’m here being pampered by Mum and Dad but I really need to get back on my own two feet.  While I know that K’s going to be there to do things for me if I need them doing (which, doubtless, I will to start with), it still feels like a pretty major and slightly scary step.  But at the same time, it’s wonderfully exciting and I can’t wait – it’s one more step on the road back to “normality”.

We’re just a couple of days away now from the end of the most amazing year of my life – one that’s seen more ups and downs than  an entire day riding Nemesis at Alton Towers, but one which will no doubt stick in my mind forever, for all the right reasons.

Despite everything that’s gone on in the last six weeks and despite all the hardships of the year before that, I’ve done some things this year that I’ve always dreamed of doing and can’t wait to have the opportunity to do again. 

K and I sat watching a film last night which summed up my attitude to life perfectly.  Funnily enough, I don’t normally credit Adam Sandler movies with being all that profound, but watching Click reminded me that life is about every experience you go through, good or bad, and that every single thing you go through helps to shape you as a person.  I would not swap a single day of the last 12 months because the great ones were the greatest because of how hard I had to fight to get through them and the bad ones were the worst but taught be more about myself, my strength and my resolve than a million sessions with a phsycologist or life coach ever could.

Here’s to meeting with triumph and disaster and treating those imposters just the same.  And here’s to 2007: year of wonders yet to cease.

24 hours later and I’m all tucked up home again.  My tac levels are all over the place and the docs can’t really work out why, but on the basis that pre-Christmas they let me go if I came back every day for bloods to keep an eye on them, they couldn’t see any more reason to keep me in if they were only going to be doing the same thing there and have me taking up precious bedspace and resources for the rest of the time.

I’m not about to start arguing with their logic.

I guess, after the last two blog-hijackers entries, I can hardly say I’ve had a rubbish Christmas or that I spolied it for everyone, since that’s already been disproved.  What I can say is that it’s no fun spending Christmas day feeling like you’re about to hurl, nor is it a bundle of laughs spending Boxing Day actually hurling and in hospital.

That said, it was wonderful to be at home and have the chance to celebrate, as much as I could, with my nearest and dearest, even if it did feel somewhat tainted by sickness.  I was incredibly lucky with the tremendous gifts I recieved from family and friends and I shall enjoy getting out and spending the bundle of vouchers I received as soon as my docs let me out in puclic places.

There’s not a great deal for me to add – being in hospital, particularly for one night when you’re mostly concentrating on not throwing up – doesn’t give you a great deal of war stories to relate.  The team of docs and nurses were fab as usual – the nurses particularly making me feel right at home again.  The one advantage of spending a month on the same ward is that you do get to know the staff particularly well, and it feels like something of a bittersweet homecoming when you’re entrusted to their care again.

So, Merry Christmas again, and apologies to all those of you I didn’t reply to on the day with emails and text messages, but I was rather preoccupied with either celebrating as best I could or sleeping the sickness off.

Here’s to a better and more stable New Year’s celebration and to an ever strong me off into 2008.

Hi guys, Kati again – I also wanted to write tonight, just to give my side of the journey, too.  As Oli’s Dad has already said, Oli is back on E ward tonight and looking pretty rough. 

So far since his hospital discharge, Oli and alternating family members have been taking him back to Harefield each morning in order for bloods to be taken to let the docs know what his Tac (the immunosuppressant) levels are.  On Christmas Eve the doc phoned and and said that Oli’s level was 5.something and gave the instruction to effectively double the dose.  As I understand it, the Tac level they are aiming for is around 10, so doubling it makes some kind of sense, I guess.

It didn’t make sense to Oli’s system, from late Christmas Eve Oli began to feel particularly tired and nauseous.  We weren’t too worried, he’d been doing a lot more activity in the previous few days and we were all thinking he’d maybe overdone things. 

Christmas morning started slowly for us which is particularly unusual for me, I am an eternal child and still wake up around 5 eagerly looking to see if Father Christmas has been.  This year, however, I had it on good authority that Father Christmas was not going to visit me but would make up for it next.  Oli woke me on Christmas morning with a cup of tea and a cuddle, that’s worth any Christmas stocking to me – although I did get a stocking as a matter of fact.  It contained a loofah, Father Christmas had apparently had short notice and all the best stocking fillers had gone so he only had a loofah and a few bits ‘n’ pieces left over.  Like I said, he’ll make it up to me next year!

As Christmas Day wore on it became pretty obvious that Oli was struggling.  He felt so tired and so sick and so sad that he couldn’t enjoy the Christmas he’d wished for.  Of course to us, it was just amazing that he was with us, nothing could spoil our day.  By this point I was convinced his body was struggling with the Tac levels, his temperature was fine, his spirometry (lung function) was fine, there were no numbers that were ‘out’.

This morning Oli woke up and was sick before he left for hospital, he was sick on the way to hospital and he was sick at hospital – it was fairly obvious they were going to keep him in.  Later this afternoon his blood results came in.  His Tac level was 39!  No wonder he felt so awful. 

The doc who saw him is fantastic.  She said exactly what I was thinking – other than the effects of the increased Tac, his body was fine.  Of course he was tired and feeling rough – anyone who’s had a morning being ill knows that you’re not at your sparkling best the following afternoon.  They put him on a saline drip to rehydrate him and IVd an anti-sickness drug straight into him as he couldn’t take anything orally.

I’m fairly convinced this won’t be a long stay, it may extend to over the weekend but we are happy that as soon as the Tac is under control Oli will be bouncing back out of those hospital doors and home in a jiffy.

Unfortunately, Oli is also a complete dingbat.  His phone is out of battery at the minute and he’s left the charger at the flat, this would be easily resolved except that his keys are with him in hospital and my keys are in Dazz’s pocket while he hurls himself down the Alps. D’oh.  This means that temporarily he can’t read your comments but I promise that will be rectified by tomorrow, honest injun.

This is 3 dodgy Christmases in a row now, although at least this is now the first of many Christmases that we can spend together, yay!

Hope you’ve all had a wonderful few days x

Hello – yet another new author.  I’m the dad bit of Oli’s “‘rents”.

Oli will shortly be posting another bolg to say how rubbish Christmas was and how he spoiled it for everyone.  I just wanted to get in first.

By way of news, Oli is not writing because he’s back in Harefield for tonight/a little while.  Nothing drastic, just problems getting the dosage of immunosuppressants right.  At the moment they’re way too high, which is leaving Oli desperately nauseous.

So he’s going to tell you that Christmas Day was ruined by him feeling sick all day, and Boxing Day wrecked by his going to Harefield in the morning, being very sick on the way and never coming home.

 Of course, Oli is right: (Oli is always right).  Christmas Day was completely disrupted by Oli constantlyjust popping upstairs for a rest or a nap.  Probably only Emily or the other transplant survivor readers will pick up on the significance of ‘just popping upstairs’.  It wasa shame he needed to, but it brings tears to the eyes to think that he can ‘just pop up’ the 10 steps which 6 weeks ago were an almost insurmountable mountain.

And yes, how rubbish was Christmas!?!  It would have been so much more fun to have been lugging oxygen cylinders round the house, to have waited an hour or more in the morning while Oli did his nebs, and his physio, and generally gathered sufficient strength to come and join us, to have an Oli who could only just make it from the living room to the table for lunch.  Without the transplant, we could have had hours of fun thinking about the fact that this would certainly have been our last ever family Christmas.

 We’ve just been given every Christmas, birthday, Easter and New Year gift we could ever wish for for a lifetime, and although we’re sad that Oli wasn’t quite well enough to enjoy it to the full, nothing, but nothing could have stopped it being the greatest Christmas we’ve ever had.

I’ll leave it to Oli to explain just how bad it was.

For someone who’s supposed to be taking things easy, it’s been hard work getting up at 7.30am every morning and commuting to Harefield for bloods and a quick how-do-you-do with the docs.  That said, it’s a good deal better than being stuck in there right now – no matter how much fun the nurses claim they all have on Christmas day.

The last couple of days have been great fun, mixed with a little bit of hardship here and there.  On Sunday I went for another walk, this time with the whole family in tow, but the freezing fog which had descended on the lake pushed my new blowers a little too hard and left me in quite a bit of pain, until I managed to warm my muscles back up in a nice hot bath later on – thanks to my wonderful bro for identifying the problem.

Although it was hard work and it hurt afterwards, it is still so rewarding to be able to wrap up warm and go out for a walk in the kind of conditions which would have had me refusing to open a window a month ago, let alone set foot outside.

I’m still requiring quite a bit of rest – sleep at night isn’t coming terribly easily as my chest is still pretty sore, which means that daytime naps are a must if I’m to be in any shape to do anything other than sit on a sofa trying desperately to not let myself fall asleep.

Today I was – I think – officially discharged from Harefield.  Although I’d been sent home and ordered back everyday for bloods, they were still holding a bed for me should my infection markers decide they wanted to play silly b***ers and start jumping all over the place again.  After seeing the fabulous Dr Carby and his wonderful team today (big shout out to Verhana and Ari) they are happy that they don’t need my bed any more and are going to give it to someone more in need – yippee!

I am still having a few issues with my immunosuppressant levels.  The drug I’m on – Tacrolimus (or Tac, as it’s known in our house) – seems to be working well for me, but since they put me on the oral antibiotic to fight the infection that was starting to brew the levels have been all over the place.  Apparently it’s not very common, but I do always like to stand out, as we all know perfectly well by now.  The upshot of that is that while they’re happy for me to have a day off for Christmas Day, I’ll need to go back Boxing Day morning for more bloods and probably at the same time in the morning for the rest of the week.  As has been said before, though, it’s a whole lot better than being in there!

As I sit and write this, preparing for bed on Christmas Eve there seems so much to reflect on: the past couple of Christmases which I’ve questioned as to whether they’d be my last; the joy being felt by not just my family but all my extended family and friends and loved ones at the gift I’ve been given; the pain that must be being felt by the family of my donor, for whom this Christmas will undoubtedly be one of their hardest ever.

Christmas, lest we forget, is all about the birth of Jesus and it seems fitting that I’m nestled in the warmth of my family to celebrate my emergeance into new life thanks to the generosity of one single person and their family.  Whatever you may believe, whoever you may pray to, this is the closest thing to a miracle I’ve ever witnessed.

May you all have a wonderful, happy, safe, warm and loving Christmas – and as you sit down to enjoy the best parts of the day, take a moment to spare a thought for those less fortunate than yourselves.

Merry Christmas, one and all.