Archives: Transplant

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….

So here I am with my butt parked in the very same room I was sat in almost precisely 8 weeks ago waiting to be told my life was about to change forever.

Thanks to the wonders of the now famous (or is that infamous) Norovirus, F-East ward of HAREFIELD beckons again. I don’t remember my last visit here being quite so deeply involved with vomit and isolation, but there’s a weird sense of calm and good omens that comes with being back where my journey began two months ago.

As it happens I don’t think I’ll be here much longer – I was admitted yesterday mainly so that they could give me IV fluids through a drip to replace all the stuff my stomach was resolutely rejecting and sending back out from whence it came, and also to give me my immunosuppression IV as well since there was no chance of me absorbing the oral pills.

I’ve a bit of an infection rearing its head in my chest, but that’s much to be expected when I get knocked back at the mo, and should be easily sorted by a short course of antibiotics which shouldn’t keep me in here.

K has written a nice pleading note to the docs in Scrabble tiles (we couldn’t find any paper) so I’m sure doc C is going to be convince by her superior medical knowledge and eject me straight from his rounds in the morning.

Watch this space, I guess…

…is the way you accelerate away from them afterwards.

And that’s exactly what I’ve done today. Yesterday was rubbish, no doubt about it – I still can’t find anything worse in the whole recovery process than feeling sick. Tired I can deal with, pain I can put up with, but nausea is something I just can’t cope with – it totally bums me out and ruins any day it pokes its rubbish little head into.

Yesterday, however, was yesterday and today is very much today – a vast improvement and significant acceleration from my little speed bump.

Today I did two things I’ve not done for ages, never mind since my op. First of all, just after 12, the legendary (and I use that word with the most careful consideration) Dazz came over and collected K and I to take us out to the cinema. For those of you who don’t know, this is the most momentous of momentous occasions for me.

Before I was ill, I would go to the cinema maybe 4-5 times a week, frequently taking in up to 8 films in any given 7 day period, some weeks watching films multiple times, other weeks just ploughing through everything that was showing in the building. As I got worse, my trips became less and less frequent and once I moved on to oxygen, I was hardly going at all and certainly would never have dared going alone without backup. My last visit to the cinema was back in the summer to see The Simpsons Movie, along with K and my brother pushing me in a wheelchair. The humiliation I felt being somewhere so familiar in such a vulnerable position all but ruined the experience for me and until my op I never set foot nor wheel inside the building again.

So today I felt a wave of the most amazing relief wash over me as I strode up to the counter to purchase my ticket for I Am Legend (which is very good, by the way, although a little scary, so if that’s not your thing then steer clear). It felt a little like returning home after a long absence – everything familiar, if the tiniest bit different in the details.

I lapped it up – the adverts, the over-priced food which I’d normally never touch, the grand, sweeping trailers on the big screen, the sheer size of the wide-screen viewing space as the feature began to roll – the sense of excitement and anticipation that I feel sitting in front of the silver screen hasn’t gone away and my passion for movies in their natural environment was instantly rekindled.

After a mesmerizing 2 hours (come to think of it, maybe the film wasn’t as good as I thought it was, maybe it’s the experience I’m savouring…) we departed the flicks for the second first of the day: Borders.

Anyone who was with me way back in the early days of 2006 will remember this entry, so knowing that one of my first “independent” trips out would be to Borders. That and the fact that I had a goodly amount of dough to spend from Christmas on books and DVDs.

As is my usual policy with vouchers I get given, I always spend them on things that I would love to have but usually wouldn’t buy for myself because they’re a little pricey. So I came away with a Making of Sin City book which I’ve been lusting after for over 2 years now and a filmmaking book I should really have on my shelves. Added to which, rather dangerously, there was a DVD sale on, so I picked up Rocky Balboa, Y Tu Mama Tambien, Sunshine, The Good German, The Science of Sleep and War of the Worlds (mostly for the extras). Perfect.

On top of all this brilliant greatness of the day, I’ve also finally started putting into place the plans for the Tresco marathon mile I’ll be running with my bro and his section of marines in April, the first step of which is my Justgiving page, which can be found at www.justgiving.com/trescomile. I’m not looking for heaps of sponsorship (just 10p a yard, in fact), but I figured that if I put myself out there raising money for charity then it wouuld keep me honest and make sure I don’t duck out at the last minute. Not that I would anyway, but, you know…

If you’d feel like passing the address on to anyone, obviously feel free. Otherwise, keep an eye here for my progress towards my biggest post-op goal so far. I’m sure they’re going to get bigger with time, but a mile seems a really long way right now. Fingers crossed.

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.

I had a true yo-yo day today.

Clinic visits at Harefield run something like this:

Morning (around 9.30) – Arrive, register, sit and wait for 5-30 mins (depending on busyness), go in and have bloods done, get weighed and have obs checks (blood pressure, pulse, oxygen sats etc).

Get given cards to take to lung function (or RFTs as it’s known in-house) and X-ray and/or any other tests they may require up to and including ultrasound, ECG, CT scan etc.

Finish off those tests and report back to reception, where you are given a rough time to return in the afternoon, sometime after 2pm.

This morning, I had completed all required checks and balances (to great satisfaction – RTF going up, X-ray looking good) by 10.15am, and returned to be told that Doc C would get round to seeing me around 3.30pm, but to be back by 3 in case he ran early.

For those of you not too quick at maths, that’s well over 4 hours.  I looked at Dad and he looked at me.  Jokingly, I offered up, “Go home for lunch?”

On more serious consideration, however, we realised that if Doc C were running late when we came back, we’d not be back in MK in time to get to the GP surgery to pick up my prescription I needed and collect it from the pharmacy near my ‘rents house (the great little place that sorts all my druggy needs).  On further thought, it occured to us that the 45min-1hour drive it would take to get back home, plus hour-and-a-bit to do what we needed to do, including lunch, plus the drive back still left us with a good half hour to spare.  So home it was.

The clinic appointment itself went swimmingly.  Doc C is really pleased with my progress – all my infective markers are right down, my liver function is almost back to normal, the other bits and pieces in my blood which were low are coming back up.  My lung function is steadily increasing, as should be expected as I start to get out and about and to exercise more and he’s now seen fit to take me off two of my anti-biotic tablets, which brings me down to a total of 10 Tx-related drugs, plus 2 CF-related drugs.  Cracking.

This evening I’m feeling pretty tired, but not too bad.  I’m looking forward to two days at home tomorrow and Wednesday, then another clinic visit Thursday.

Keep well.

It’s funny, you know.  I was just coming on here to quickly bash out a blog and thinking over what I’ve been up to and I thought, “it’s been a nice, lazy Sunday.”  The thing is, though, it really hasn’t.

All right, I did sleep through *almost* all of the morning (I did see some of it…), and I did watch about an hour of football/rugby during the day, too.  But my major achievement of the day has been in being active almost all the time I’ve been up.

For those of you keeping track (like me) of all the firsts I’m experiencing at the moment, there’s another to add to the blotter, that being the first walk down to the corner Tesco to get a paper – and a fitness magazine, get me.  Lovingly measured by our trusty friend Dazz, I can reliably inform you I walk all of half a mile and a bit, albeit downhill, and felt strong enough to walk back up again, too, had we not already arranged for Dazz to meet us there in his car, lest the return journey prove to be too much to handle.

I was so happy to have done it – it was a lovely walk and it showed me just how fit these new puffers of mine are.  More than that, it showed me that my leg muscles are also starting to catch up.

Not only did I manage to walk the half-mile to the shop, but I also did a 15 min session on the exercise bike this afternoon, too.  It was hard work and my legs really felt that one, but I felt great getting off it and feeling like I’d really been working myself.

On top of all my exercising, I also made a start on clearing up the study, otherwise known as the bomb-site.  Also took on cooking duties for the night and helped out with the washing up, too.

What’s really hit me about all of that, though, is not so much how tired it made me – because by the time I’d finished drying up and then wiping the kitchen down, believe mme I was cream crackered – but how quickly I recovered.

When I flopped on to the sofa with everything done for the night around 9pm, I had the familiar pain in my lower back which would come on whenever I’d done too much before.  The difference is, back then it would last the rest of the night and I’d be totally out of commission, whereas tonight, it’s barely an hour later and the pain’s gone off and I’m feeling fit enough to do anything that needs doing before bed.

It’s such a bizarre sensation to be able to recover from things quickly – to not have one simple task wipe you out for the entire day.  I LOVE IT!

Not much more I can say to that, really.

This week has without doubt been the busiest week of my life in which I’ve achieved precisely nothing.  Today I have a “day off” and I’ve spent the whole thing in my PJs desperately trying to catch up on the sleep and rest that I’m told (and feel) my body desperately needs right now.

The essence of the problem?  Because the docs were nice enough to let me out before Christmas – and before my Tac levels had sorted themselves out properly – I’ve been having to go to Harefield for blood tests to check the levels every day.  Which means from New Year’s Eve to yesterday I’ve been getting up at 7.15am every morning, traipsing the hour to Harefield for bloods and an indeterminate wait of between 15 minutes and 4-and-a-half hours before they let me home again.

In the process, I’ve had a white cell count creeping northwards, which has since settled, plus some other slightly raised (ie: dodgy) results back, which have put the docs on their guard.

I’m not really complaining, as it’s better to be commuting every day than still being resident on the ward, which I’m sure my ‘rents will agree with, even if they are the ones having to ferry me to and fro every day.  I am also well aware that plenty of people have much earlier starts and longer days than me and suffer it without moaning, but right now I just miss my sleep.  I can categorically state for the record that 7 hours sleep is not enough for a body still recovering from the rigors of having half it’s engine ripped out and hastily replaced with a new, improved model.

So I’ve been delighted to bask in the chilled relaxedness (it’s a word, I just decided) of a day with no Harefield visit.

Yesterday was my first post-Tx clinic appointment, which went really well, despite being deathly dull and involving a 4 hour wait to see Doc C.  He’s mightily impressed with my progress and all the infection markers which had been creeping up have come back down again, which is ace. The upshot is that I have a day off today, then hopefully my last day-time visit for bloods on Saturday morning, after which I should settle in to a pattern of twice weekly clinic visits, which will gradually become less over time.

What all of this to-ing and fro-ing from Harefield has meant, however, is that my time at home is taken up pretty much entirely with eating and sleeping, with barely a couple of spare hours left over to spend time with K, which has been a real drag.  We both naïvely assumed that being back at the flat would mean we’d get more time together, but it turns out that’s not so.  We are both anxious anticipating my switch to clinic rather than ward visits so that we at least get Tuesday and Wednesday to ourselves.

Still, it’s not all doom and gloom.  In fact, it’s not doom and gloom at all, really – I can’t moan when I still spend all my day thinking about the myriad things I want to and will soon be able to do with my new life.  I’m just itching to get back to work, soon as my body and my doctors (who work, naturally, in unison) allow me to.

Think of me, being poked and prodded, when you wake lazily in bed tomorrow morning.  But don’t feel sorry for me, because shortly afterwards I’ll be tearing down the corridor to escape at a speed I never imagined I’d achieve again….

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.