Monthly Archives: December 2007

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.

Full post coming later, as per usual, but just a quickie to say you can see the all new fit and healthy me on Anglia News tonight at 6.30pm.  Failing which, for those of you too impatient to wait for the news or who live outside the Anglia region, you can click the link below and watch the piece on the good ol’ interweb.

Watch in amazement as I run up stairs, talk rubbishly about post-transplantyness and stand on a freezing cold lakeshore with K pretending to look like we’re there for fun!  And look out for Mummy L’s perfect post-tx soundbite….

http://www.itvlocal.com/anglia/news/?player=ANG_Home_26&void=134327

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.

First off, I should quickly clear something up: when I say I’m “home” what I actually mean is I’m back at Mum and Dad’s (the ‘rents).  While this is, in a very real way, “home”, it’s not – technically – “home” as in sleeping in my own bed on my own pillows and waking to my own view.  Luckily for me, I am still managing to wake with the wonderful view of my darling K beside me, something which I’ve had to struggle without for the last 4-and-half-weeks.

Today has been the most wonderful day – surprisingly mundane, but it’s surprising how mundane takes on a whole new meaning when you’re kicking around at home with new lungs.

I was completely thrown this morning when I had to get up to go in to Harefield.  I’m so used to working out what time I’m leaving then working backwards through nebulisers, physio, breakfast, meds and extra time to get dressed, washed etc.  Last night I sat with my alarm before me and realised I had no idea how long it would take me to get up and out in the morning.  Wash… Dress… Breakfast… Tablets… Leave.  That’s, what, 45 mins max?  I’ve NEVER been up and out of the house in 45 minutes.  It’s usually at least an hour-and-a-half.  Mark that down as one more surreal post-transplant experience.

We rocked up on E Ward for 9.30, saying a cheery good morning to a couple of my favourite nurses, and promptly had my bloods done.  It was a bit of a wait to see the docs, who were on their rounds when I turned up and we had to wait for them to get to us, but when they did they were happy enough that I not only looked, but still felt well.  They sent me toddling off home again, to return tomorrow, and we were back home again by 12.30pm after a torrid journey back up the M1 (bad choice Dad…).

No sooner had we got back than my Bro rocked up to start his Christmas break from Plymouth and it was bacon sarnies all round to celebrate.  It was so unbelievably normal it was almost weird.  Get your head around that one!

As bro popped off to collect his sporting buddies for their weekend’s festivities (of which I plan to be a part next year), I decided it was about time I tried my new lungs and strengthening legs out and took myself off for a walk around the block.  The ‘rents couldn’t help but join me as I positively marched myself round the block, doing a circuit round behind the house in about 5 minutes, something which took me at least 10-15 last time I did it, and that was nearly a year ago, since when I’d not even have contemplated it.

By the time we got back, including having a quick welcome home chat with the neighbours, K had arrived back with Cliff and Dazz, our very good friends, who stayed for a chat and a cuppa.  Eventually, we managed to pack them both off, Dazz needing not only to pack for his holiday, but also to finish his shopping for skiing gear, visit relatives and catch some serious Zzz’s before his long drive North – all in the space of 3-4 hours.  Not the most organised of our friends is our Dazz.

When they’d gone, I heeded my doc’s advice not to do too much and took myself off to bed for a while, waking after an hour or so feeling slightly cloudy headed, which told me, like it always does, that I’d slept well and – honestly – would feel a whole lot better once I’d woken up.

Sat and chatted to Mum in the kitchen while we prepared a fruit basket for the ward staff to take in tomorrow – fruit being the antidote to all the cake and chocolate they get given at Christmas time: I don’t want to be responsible for staff going off sick with massively high cholesterol.

Plonking myself in the lounge with Mum’s flashy new lap-top, I then settled in to spend an afternoon going through my Hotmail account and cleaning it up and reading through the 3 pages of messages left for me on my Facebook page.  Crazy.  I can’t believe the amount of love and support I’ve had over the last month – it’s left me as close to speechless as I ever get.  You know, like, 50 words a minute rather than 100.

After dinner S&S came over for a game of Hollywood Buzz (thanks Suze and Gary!), which I cruised, naturally.  We were going to be joined by another friend from Luton, but sadly as I directed him to the house we established he had a cough and I had to turn him away, which felt horrible, but it’s really, really important for me to quarantine myself at the moment.

So instead K and I settled on the sofa to watch the final of Strictly Come Dancing, which entertains me more than it should do and I find myself ooh’ing and aah’ing at the lifts, holds and twirls like someone who actually knows what they’re watching.

It’s been the most wonderfully straight-forward, mundane day and I hope there’s many more to come in the next week or so.  Thanks again for all your support and love you’ve sent, through the blog, Facebook, email and cards.  It means the world to me, and it is still helping me through the tough parts of everyday.  And don’t get me wrong – there are still the tough parts to get through.  But each day I get stronger and each day the tough parts get a little easier.  Sooner or later, the tough parts will be so brief I’ll hardly notice them, and the good times will start to roll with a vengeance.

Crikey – that was all a bit of a roller-coaster, wasn’t it?  I’m starting to feel like I slightly over-use that metaphor, but it I’ve now discovered it’s very definition.

Still, finding myself sat back in the bathroom where I was relaxing when my mother burst into the room, towel in hand to pluck me from the bath and whisk me off to Harefield not a month and a day ago brings a certain surreality to the whole thing.  Not so much closure as openage: the start of a new life from the page I left the old one.

As Kati said in her last entry, I’ll be finding myself running to and fro to Harefield every morning for the next week or so for bloods and a doctor’s consultation, but it’s a small price to pay for being out of hospital and home for Christmas – not to mention, as Anna pointed out in the previous comments section, sleeping in a bed with a duvet!

It’s been a crazy last 4-and-a-half weeks, and I’m not out of the woods yet, or fully recovered by any means, but I’m home, I’m happy and I’ve got my family and loved ones around me and that’s all a guy can ask for.

I can’t begin to thank each and every one of you for the support you’ve given me through this whole wonderful, trying, exceptional, terrifying, beautiful ordeal.  Words cannot express the strength and resolve you have all given me with your prayers, thoughts and words of wisdom and cheer.  You have all played just as big a role in my recovery as any medical science has.

I fully intend to make the very most of my new life.  I want to be able to say that if my donor’s family knew who I was and what I had done with my new life, they would be proud of me and comforted to know that the death of their loved one wasn’t wasted, but helped to save and transform a life which meant something.

To my donor: I can never thank you face-to-face, but if you’re there and you’re watching, be confident that you have given the greatest gift anyone can give and that I will not waste a second of the second life you’ve given me.  God bless you and keep you in eternal life.

Yaaaaaaaaaaaaaaay!

Oli’s docs have just seen his blood test results from today and told him that he’s alllowed home this evening!  He has agreed to come back every day for further blood tests and needs to take a bag every day in case he gets re-admitted but I think he’d agree to almost anything in order to spend one night away from hospital.

I’m so hugely happy for him!