Archives: Support

First fact of the weekend – Durham is far.  Not far like as in quite a long way from MK, I mean far as in get-up-early, leave-before-lunch, drive-for-ages, double-stop and still only just get there before nightfall.

So get up early(ish) we do, drag our butts out of bed and K breakfasts while I repack all my useless packing from the night before into a better case which, I hope, will be easier to handle.  We set off by 10, making a quick stop off at Parental Lewingtons to say Hi and drop off the Mother’s Day gift and card for the day we’ll sadly be missing out on tomorrow.  Part of me feels terrible for not being around to share it with my wonderful mother, but I know that actually, what will make her happier than anything is knowing that I’m able to be off gallivanting and enjoying myself at the other end of the country.  And a nice pair of earrings doesn’t hurt, either.

We’re off and away onto the M1 by 11 and start the trek to the North.  And then a bit further.  One of the dispiriting things about heading that far North, as I have previously to Newcastle, a mere pebble-chuck from Durham, is that you travel for ages on the M1 and eventually get passed Sheffield to Leeds and you realise that you’ve still got as far to go again to get to where you want to be.  Still, it could be worse – we could have paid £360 for the both of us to do the 5-hour train journey instead.

Along the way we rock the iPod, whiling away the miles listening to a track-listing of the machine’s choice, occasionally edited by the passenger-seat DJ.  We finally roll into Durham off the A1(M) at somewhere around 4 o’clock and amazingly find our accommodation within 10 minutes after only a single phone-call to our Castle-based “fixer” the ever-attentive Pops, doyen of the My Friend Oli campaign.

The room is a spacious twin guest room in the college of St Hilde and St Bede.  I’ve no idea who they are, but as Saints go, they have a good line in comfy sleeping-quarters and nice, deep baths.  No sooner are we in than I hit the sack to crash out for an hour, before we venture up into town to meet Pops and her little (although really rather tall) bro.

The walk from the college into town gives us our first visual impression of the city of Durham and as first impressions go, it’s hard to imagine a better one.  With light shimmering off the river as we wander along the towpath, we pass the hardy-yet-incredibly-foolish rowers packing up into the rowing club, then round the corner to get our first sight of the Cathedral and Castle atop the hill in the centre of town.  With the Elvet Bridge mirroring itself in the inky blackness of the river, the scene is as close to mesmerizingly seductive as it’s possible for the still life of a city to be.

After climbing the biggest set of stairs we were to encounter all week (and encounter them fairly darn often, too), we manage to bump into Pops and bro on the bridge itself.  It’s the first time since the campaign kicked off that I’ve actually met Pops, despite numerous conversations by phone, email and good ol’ reliable Facebook.  Not surprisingly, what with this being a student town and Pops being a resident hard-core studenty-type, the first thing we do is settle in the nearest  bar.  This is where I fell in love with Durham head-over-heels – where else but a student town could you pick up a round of drinks consisting of a pint of Guiness, a half of Kroenenburg, a double-Gin and lemonade and a coke for under a tenner?  Certainly not in any of the bars in MK.

After an interval of one-and-a-half rounds (don’t worry, I was on Coke), we are joined by Pops’ just-arrived, former-native other half.  No sooner had the longed-for-loved-one turned up than Pops abandons us to make her final prep for tonights’s closing night of Assassins, the Sondheim musical she’s MD’ing, in amongst all her work on My Friend Oli, plus uni work, plus Oli-sitting duties for the weekend.

After the most rushed meal I’ve eaten in a long time (which came back to haunt me later, but that’s another story all together), the four reprobates she left in the pub stumble/run/lurch our way up the Bailey just in time to slide apologetically into our seats having delayed the start of the show with our tardiness.  Well, I like to think we were important enough to delay the start of the show, but then again it was probably more likely to be problems tying John Wilkes Booth’s cravat than anything to do with up.

I’ve not seen Assassins before and I was pleasantly surprised – I often struggle with the first viewings of Sondheim shows, even if they do grow on me with time.  Although there were a fair share of technical problems with radio mics and odd-lighting (largely due to the awkward nature of the venue, it must be added, rather than any ineptitude on the part of the production team), it was an impressive show, especially considering the speed with which it was put together and the work-load the cast have to carry outside of the Theatrical realm.

The show also marked the first time in 2 years I’ve seen the ever-marvellous and always Gentlemanly Bill Bryson, Chancellor of Durham Uni, world-renowned author and – let’s not forget – instigator of the whole My Friend Oli campaign, following our first meeting and subsequent phone chats since.  It’s great to see him again and spend a bit of time catching up on our news.  Well, I say “our” but in reality, the first evening is spent almost entirely and exclusively talking about me and my op, many of the details of which Bill had yet to be appraised of.

After the show, K and I decide to judiciously step aside and let the cast and crew make the most of their last night party without forcing Pops and the rest of the My Friend Oli gang (the ever-organised events-queen Alice) to feel the need to nanny us through the night and thus not really take part in all the usual shenanigans that one should at the close of a production.

Being the impossibly nice person he is (seriously, you have to see it to believe it), Bill insists on walking us the 20 minutes back to our lodgings along the riverside before heading back to exactly where he’d just been to catch his own cab back to his residence.

Bushed from the day’s driving and the night’s exertions (not least the hills of Durham), we are both in bed by 10.30 and I’m fairly sure I’m asleep by 10.31.  But I’m already dreaming of living in Durham.

Great day today – not only did I get through a second gym session in 2 days with no ill effects (read all about it…), but also found out that I’ve hit the Plymouth Sound website.

Because the Marines are based in Plymouth (and possibly because my bro happens to be dating one of the presenters), the local radio station (I say local, they’re pretty awesome, not like some “locals”  I could speak of….) have picked up on the marathon story and are running pieces not only on air but on their website too.  They’ve even included links to the ODR and my Just Giving page so people can either show their support financially or just by signalling their intention of saving someone’s life after they’re gone.

It’s getting quite exciting this marathon lark.  What with the gym sessions and all, I’m starting to think that being able to run a mile in 6 weeks’ time isn’t necessarily totally beyond my reach.  Not sure how fast I’m going to do it, but then the Marines are going to have done 25 miles and be weighed down with 30lbs of kit, so at least I’m not going to be the only one looking shattered by the whole thing.  Although I think I might feel a little inferior jogging across the line just little ol’ me – I might have to fill a rucksack with polystyrene to make myself blend in more.

I also impressed myself today by being remarkably sensible and going against my all-go post-Tx mood and having a sleep this afternoon.  We’ve had a bit of a busy few days since heading to friends in Kettering on Sunday and having two early-morning hossie appointments for K two days in a row, which has added up to not much sleep and lots of go-ings during the days.  Getting back in from the hossie run to Northampton this morning, I spent a bit of time trying to keep sleep at bay checking my emails and doing some work-y bits and pieces, but in the end decided that if my body says “tired” then to bed I must take it – not point playing games with a body still in recovery.

Pretty smart, huh?

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.

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.

Oli has done so well again today.  He really blew me away when I went with him on another physio session on the stairs.  I was walking behind him and the physio as we went all the way up in one go and all the way down in one go, I was trying very hard not to get in the way and just observe so it wasn’t until the end that I asked him if he realised what he’s just done.  Not only had he gone up and down the stairs a lot more easily than he had yesterday, he’d also been chatting the entire time – he hadn’t even noticed!  It’s things like this that make me stop and realise just how much his life has changed already.  I would never have dared to speak to him while he was slowly going up or down stairs, one step at a time, as I knew he wouldn’t have had the breath to talk back.  Today he was chatting away and didn’t seem out of breath at all.  Wow.

This has led me on to a strange pattern of thinking today as we are entering the realms of activities that Oli either hasn’t done for a long time or has never done.  When we got there this morning Oli was a bit down.  He said he didn’t know why but he felt ‘off’ and was a little worried about it, even though all of his levels had been checked and had come back perfectly fine.  It was then that I had to remind him of all the activity he did yesterday, activity he hasn’t done for at least months, if not more.  His body, apart from recovering from a huge operation, simply isn’t used to this level of activity.

I don’t know but I don’t think Oli has ever had a stitch from running, or had achy legs or sore feet.  It has crossed my mind that when Oli experiences these for the first time, particularly the running stitch, he could possible think something major is wrong and start to panic.

We have all spent so much time thinking about the great things Oli can do with his life now, we had overlooked the little, more unpleasant things he will inevitably discover.  I’ve also been thinking that Oli hasn’t had a 35/40 hour week, ever.  He’s going to find out that it’s tiring and not always that much fun.

This post is not meant to sound negative in any way, it’s just that for the first time tonight I’ve realised how little experience Oli has of the regular world.  He’s going to go on and do great things and experience things he never thought he would.  Along the way however, he’s going to go through some very hard times.  He will come out the other side and the triumphs will be that much sweeter because of it.

We have a long way to go and this year will be very hard but also very rewarding.  I think that the relationships he has with close friends and family will need to be very strong to come out the other side but if they survive, they will be that much stronger for having come through it.

That’s all got a bit deeper than I meant it too, oops!

Oli has also been moved to a different room now, he is no longer highly dependant and so is one step closer to home (hopefully!).  Oli’s Mum, Dad, Oli and I are all looking forward to a wonderful celebratory lunch tomorrow, I have to admit I am so excited, I might burst!  If you have a drink tomorrow, or even a cup of tea, celebrate with us and raise your glass to Oli as it is his first trip out since the transplant.  He is one awesome guy.

Oli’s walked up and down a flight of stairs!!!!  I’m not with him today and have no-one around to jump up and down with and scream in a happy girly way!  I am so proud of him!

He’s just called me and he walked to the foot of the stairs with the physio which is plenty far enough.  He did the first five steps and went to try the next eight.  He did the eight and figured he’d got that far and so should go for the final 5.  After a little break he walked all the way down, then back to his room AND then back to the bathrooms for a shower.  This is just fab, he has done so well today.  He said it was a lot harder than he thought it would be but is really proud of himself for achieving it.  I’m a just a big bubble of happiness right now and I’m so glad I can share it with you all! 

There is absolutely no way he could have done all of that three weeks ago, he is already leaps and bounds ahead of the poorly guy who was half looking forward to/half dreading the approaching Christmas.  No matter what happens or where we are, Christmas is going to be such a celebration of new life.

Have a great day x

Speechless is completely how I feel at the moment.  You are all the most amazing bunch of people and the messages you’ve sent Oli have been so wonderful and heart-warming.  These messages are so important for encouraging him and letting him know just how many people are sending love and prayers his way.

Today has been another fantastic day.  Oli has been introduced to the Little Blue Book (he’s assured me the little black book was thrown away a long time ago).  The LBB holds all the dosage detail of his medications which allows him to be in charge of what he is due and when.  This is a very important step for him as it is part of a checklist of things that he needs to be able to do before he is allowed home.  As a CF patient, Oli has been used to self-medicating for years, however, this is a whole new area for him.  Oli has to learn about the drugs he takes and needs to remember to take them at the right times and in the right dosages.  It won’t take him long as he is used to taking regular medication but the list of drugs is HUGE so he’ll need to be a memory man for a while until it becomes second nature.

Another awesome step forward came within the Doctor’s orders, Oli has been told to go out for a pub lunch on Saturday! Even as I write I am grinning stupidly from ear to ear!  It’s so odd to think how quick these things are moving.  It has been three weeks since the transplant and in so many ways it feels like longer as we’ve been through massive highs and despairing lows.  It’s so amazing to think that this gift has changed our lives so quickly and so wonderfully.  Oli is doing so well and is making great progress, almost hourly it seems!  If you haven’t already done so, please consider signing on to the organ donor register at www.uktransplant.org.uk.  If you have signed up, please talk to at least one person tomorrow about Oli’s miracle, Emily’s miracle (www.pinkandsmiley.blogspot.com), Peter’s miracle (http://waitingforthecall.blogspot.com) , James’ miracle (www.ox28.com) and the other miracles that are waiting to happen.  Encourage them to think about signing up, too.

You are amazing, hope you’re enjoying the ride as much as we are x

This post has been a bit slow in coming, am really sorry. Thankfully though, it’s not for bad reasons as Oli is doing really well.

 Oli is now completely wireless, the vas-cath and catheter have now been removed.  This has caused much excitement as today Oli was able to put clothes on and feel more ‘normal’ (there are so many jokes about Oli + normal, you’ll have to think them for yourselves as there isn’t space for me to put them in).

Oli has also had almost all of his pills and potions stopped by his consultantas he wants to see how Oli manages without them.  This makes a big difference to his system as he did have a pharmacy’s worth of various medicines rolling around his insides, much to his kidneys dissatisfaction.

The days have been going brilliantly for Oli but the nights are still difficult.  He is getting increasingly homesick and from 6pm starts to get himself wound up about us leaving him and not wanting to be alone.  It’s completely understandable but it’s also something we really need to try and find a solution to as we don’t know how long it will be before he is home and we don’t want it to remain a problem.  It has crossed my mind that you guys could really help at this point.  Every comment that gets written and posted gets sent through to his phone so that even though he doesn’t read my posts, he sees your comments.  If you think of Oli at some point in the evening after 8pm, please leave a comment telling him just that and then he may not feel so alone.  I don’t know if it will work but it’s worth a try if it will help him feel less lonely.

There’s not really any more news as things are progressing steadily and with a definite upwards curve.  As a very marvellous man said to him yesterday “This isn’t the face of a worried consultant”. Yay!

In case you haven’t read it, please check out the ‘A message from your host’ post which is before this, it’s a very special post that I know you’ll want to read.  I wasn’t keen on writing over it but I’ve had my orders to keep everyone updated and now Oli can run faster than me I’d better not make him grumpy!

Today has been anothr great day, I really can’t think of a time when I’ve been as happy as this, it’s the best feeling in the world. 

When Oli’s Mum and I got in to see him this morning we found a sad and tired Oli who didn’t really want to play this game anymore, I think the night on dialysis hadn’t helped him get any sleep and the extra fluid around his body (all 8 litres of it, not nice) was making him so unformfortable that he didn’t know where to put himself.  Oli’s Mum got sent off pretty quickly to go on an apple juice hunt and I just sat myself near him, at the end of his bed.  After a couple of quiet minutes he looked at me and said “I need to pull myself out of this don’t I?” and we came to the decision that I was going to put some music on the cd player (thanks Kate!) and Oli was going to sit up and be more positive.  From that moment on Oli’s day just got better and better, and better!

The Big Head Dude Doc Man (who needs capital letters because he is that important) came in to see Oli and decided that the majority of his remaining wires, tubes and drain should be taken off.  We were so happy!  The central line, which has 3 or 4 lines in it and is in no way connected to the London Tube, in Oli’s neck has been removed and instead they have re-accessed Oli’s portacath which will be used for his IV drugs.  The arterial line (I don’t know what this was for, I think it may have been blood gases) from his groin has been removed, the final chest drain has been removed and he is no longer on the cardiac monitor. 

The reason for all of this, apart from being well enough to be taken off of everything, is because of all this nasty extra fluid.  The overnight filtering has really helped, last night 2 litres of extra fluid were removed by this dialysis machine, but the body will be able to shift the fluid much more easily if Oli is able to do more physio, which in turn is easier to do when wireless.  The lines in Oli now are the port when it’s in use, the vas-cath (in his groin where he connects up to the dialysis machine at night) and his catheter.  Hopefully the vas-cath will come out tomorrow and once the extra fluid comes down and they are needing to check his urine output so much, the catheter will also get removed.  I’m not sure how long they will give Oli the IV drugs but at some point they will stop using his port and give him oral antibiotics instead.

This evening Oli doubled his 40m record.  It’s so amazing!  I wasn’t there for it but Oli phoned me to tell me and the joy and emotion in his voice made me want to cry with happiness – this is someone who 3 weeks ago was really quite poorly and got out of breath getting out of bed, this really has been the gift of a lifetime for Oli, and for us.  Oli was telling me how he walked from his room to the end of the ward and back and said that the nurses were beaming at him and the kitchen porter guy (official title, I’m sure) was cheering him on and telling him how good he looked!  Oli also said how he met a nurse he hasn’t met yet, she asked him what he’d had done and that made him realise HE hasn’t told anyone yet – lots of people know but not from him, for the first time he said ‘I had a double lung transplant nearly 3 weeks ago’ and when he looked over and saw his nurse’s face, Oli could see exactly why this nurse did his job, Oli said it was such a picture.

This evening Oli was able to spend a lot of time with his Big Bro who has come up to see him for the weekend, this is the same legendary Big Bro who gave the butt kicking last week.  Wow, must this be a different Little Bro he is seeing!  Following his legendary form, Big Bro has set Oli a challenge that has been agreed to (witnessed by Oli’s Dad, so no getting out of it).  On April 10th 2008 Oli will run alongside his Bro and his Bro’s marines for the first mile of the CF Trust’s Tresco Marathon.  How unbelievable is that?!  I’m thinking that all those who promised to wield big sticks at the previous exercise programme might need to get those sticks out again!

Bring it on!

It’s Oli here. Hello! This won’t be long as it’s quite hard to type long things on my ‘berry and i’m still not up to much in the way of telephonic communication.

I really wanted to write to thank every single one of you for your wonderful prayers, thoughts, best wishes card, messasges and comments on the blog – all of which get emailed through to me on my phone.

I’m sorry i’m not replying or responding, but things are still pretty up and down and my hands are so shaky that texting is tricky. Kati’s update on the day will tell you much more, but things are improving greatly.

It means so much to get your messsages and read your words of support. I promise I’ll get round to a proper catch-up with everyone soon.

Take good care of yourselves cos i’m coming for hugs when I get out!