Archives: Difficulties

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.

Oli has now stayed in 4 rooms within the transplant ward.  He has been in a high dependancy room, a not-so-quite- high dependancy room, a goodbye-you’re-going-home room, and as of half past 8 this evening an unlucky-you-might-be-here-until-Christmas room.

The past two days haven’t been quite so bad for him.  Yesterday I went to see him along with two really good friends of ours and we merrily chatted for hours and helped Oli almost forget that the day sucked because he wasn’t well.

Today he was definitely starting to struggle with the idea that the goal of going home is getting harder to reach.  One of the highlights of his day was being interviewed by a lovely lady from the Daily Mirror – the article will be in tomorrows (Friday 21st Dec.) paper.  I repeat in case you weren’t paying attention – BUY THE DAILY MIRROR TOMORROW BECAUSE OLI WILL BE IN IT.  I think that’s clear now, don’t you?

This afternoon became a bit of a battle against nausea and tiredness.  He’s had a rough couple of days, along with the physical presence of the latest infection, he has also had to use a lot of mental and emotional energy in trying to keep positive and not get too upset about staying in hospital. 

Unfortunately, no matter how many members of staff say that Christmas on the ward is fun, being part of Christmas on the ward is a big reminder that you’re not remotely well enough to go home.  Fingers crossed however, the decision to keep him in hasn’t been made yet and we still have a few days to get the infection under control and get Oli home.  It’s difficult to get into the Christmas spirit though.

As we left this evening Oli’s mood had changed again to being resigned to his fate, come what may.  Hopefully he’ll get visited by three ghosts this evening who will each help him find the fight to carry on.  I know it’s tough, I’ve been there, different situation but I’ve been in hospital over Christmas.  The big difference for Oli is that he still has a glimmer of light at the end of the tunnel which will lead him home for Christmas dinner.

Plus he’s already received the greatest gift possible so Christmas is already better than it was going to be.

Don’t forget to buy the Mirror tomorrow – you’ll get your first glimpse of Oli post-transplant!

Oli won’t be home this week, or in time for Christmas quite probably.

He woke up today feeling rubbish and with a temperature, gutted doesn’t even come close to how he’s feeling right now.  His doc saw him and was also gutted for Oli, especially as the doc said he had plans to send Oli home today – Oli didn’t really want to hear that.

Right now we’re waiting for blood tests and x-rays to come back before they decide on a plan of Oli.  In the meantime we have a very sad and poorly Oli.

I can’t think of a single thing to say or do to make him feel better at the moment, I’m just going to go to hospital and give him a big hug.

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.

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!

*Before you begin to read please make sure you are comfortable, this may turn into a long rambling post, apologies!*

Oli is doing so well.  I was really excited today because I haven’t seen him since Thursday and even then he was asleep.  I have to admit, I was a little nervous about seeing him because I didn’t know what to expect, in my head was a picture of a very poorly Oli attached to everything and not very communicative.  I was sooooo wrong!  Oli was sat in a chair, next to his bed, when his Mum and I walked in at 10.30 this morning. 

I don’t know how much you guys know but ITU has very strict visiting times, necessarily so, it’s a busy place.  In the morning visiting time begins at 10am and finishes at 1pm, there is a break for a couple of hours and the second visiting slot starts at 3pm and finishes for the day at 7.45pm.  I would have thought that the majority of people in ITU are heavily sedated and so the time could potentially pass by without them taking too much notice.  Unfortunately for anyone who is completely aware of goings on (if maybe a little confused and overwhelmed every now and then), the tiny visiting slots are very precious times that need to be filled with constant, loving company.

These tiny visiting slots are often made even smaller due to the current system of intercom admittance to the unit.  I really want to point out before I go any further that this is definitely not a criticism of the staff who work in the unit.  Every member of staff I have seen there has been working so unbelievably hard and doing their job of taking care of very poorly people. 

HOWEVER, the intercom system does not work as efficiently as the staff of the unit.  It works like this… Visitor presses intercom buzzer, buzzer is answered and visitor announces who they are and who they want to see, ITU person goes to check that the patient is ok to accept visitors and then returns to buzzer to let visitor in.  Sounds simple?  It should do, but it can take a long time for the buzzer to be answered, the ITU person can fail to come back to let you know if you can visit or not, the ITU person doesn’t press the admittance button to open the door so you have to go back and press the buzzer, blah, blah, blah. 

So today, Oli’s Mum and I arrived at 10am but didn’t get an answer to the buzzer until 10.30am and when we got to Oli we found him quite distressed as he’d been told that no visitors were waiting to see him.  It may sound small but it’s a BIG thing.  Try to imagine being hooked up to all kinds of things, alone in a bed for 14 hours without any form of entertainment, feeling scared and clock watching, hanging on to the hope that at 10am your Mum will come in and give you a hug.  I really felt for him when we found out that he’d been told that no-one was there for him, he had suddenly turned into a tiny, scared little boy whose Mummy hadn’t turned up to collect him from playgroup.  I’d love to help them find a way of making the intercom system run more smoothly, it makes so much of a difference to patients.

So ramble over and back to Oli.  He is good, he looks good and I couldn’t believe that he was sitting up, out of bed.  After the initial drama he was chatty, until he got tired, and seems to be completely ‘with it’.  His is no longer on kidney dialysis as his body has corrected the imbalance of sodium, potassium, etc.  He is on a little bit of oxygen, via nasal specs, but is largely as we left him on Thursday.  The drain for the important leaky fluid is at a good level and all things being well he will be drain free in a week or so.

Luckily for us the doctors came to see Oli while we were with him so we got to listen in to what they were saying.  The overall message from them is very positive.  They are happy with the way things are going and although they would like Oli to stay in ITU for another 24hrs, they are very happy for him to go back to the ward at the beginning of the week, once the ward has a bed available.

I have to say that at this point I am just so happy that Oli is doing well after the scare on Friday.  Friday hit us pretty hard as we’d maybe forgotten that it was still early days and been swept up in how well he was doing.  However, all credit to Oli and the doctors, they responded quickly and did what they hoped was the right thing and Oli has been so strong, physically and mentally throughout this.  To me he doesn’t appear discouraged that he is back in ITU after being on the ward so quickly after the transplant, if anything, it has made him more determined to do what he needs to do to get back to the ward.

We must remember that we’re still only just setting out on this journey.  We’re going to have lots of wobbles, hopefully not too many lows and more than a few highs.  I think my outlook is to enjoy the highs and take care of the lows when they happen. I want Oli to feel proud of himself for fighting so hard and to add these battles to his armour and use them to attack the next lows but it really helps him and us to know that we’re not alone on this journey and that you’re all with us every step of the way.  Thank you so very much for sticking with us, it means a great deal x

Hi everyone,

While in theatre the surgeons discovered a hefty infection that they weren’t expecting to see.  They’ve managed to do what they can for now and had sorted out the leak so Oli can now be pumped full of nutrients and drugs to help his body win the massive fight that’s reared its head.

Oli has been taken back to ITU and has been put back on the ventilator and back to heavy sedation.  The good thing is that he won’t know any of this is happening.

This is a pretty scary time right now and things can change very quickly.  Not much is known about what is happening and so as soon as there are updates I will let you know.

Positives to take from this: The team have found it and got rid of a load of goo already, they are fighting it, Oli is being cared for by some of the top medics in this field, infections after transplant are not uncommon and so the team know what to do.

Nevertheless, prayers, good vibes anything is welcome.  As I said, let’s be thankful that Oli doesn’t know what’s happening now.

Much love x

Update 16.30 – Oli has been put on kidney dialysis, this should help him fight the infection.  The head doc is hoping Oli will be able to pull through.

1/12/07 10am – Heard from his parents, no change overnight, still stable.  Hoping to go and see him later.  Thanks for all of your kind messages, it’s really appreciated and it’s great to know so many people love him as much as we do.

7.30pm – Oli seems to be doing well, absolutely desperate to come off the ventilator, think they may take it off this evening if an x-ray shows good things.  The head doc dude came in on his day off today to do a broncoscopy (looking into the lungs with a little camera) with a view to suctioning up a load of goo that may still have been lurking in the lungs.  From what I can gather there was little to no goo there at all so he didn’t need to do much at all.  I think all of his infection markers might be heading in the right direction and they might have caught the infection at just the right time.  Hopefully this isn’t too much of a set back and I’m sure Oli will be back up to speed before too long.  Am off to see him tomorrow morning, more info then.

Today didn’t get off to a great start but has ended on such a high, even as I write I can’t get a stupidly happy smile off my face.

As far as I can gather this morning was pretty rubbish.  Lots of things happened all at once and although none of them were particularly drastic, they didn’t help improve Oli’s already negative frame of mind.  Big bro was there thoroughout the morning and after a while deemed it necessary to give younger brother Oliver (because you always get called by your full name when you’re about to get told off) a bit of a talking to about taking a fresh perspective on things and seeing that things may not be as bad as all that.  Big bro is a muchly big legend and after leaving Oli to think things through, Oli had the biggest turnaround I think I’ve ever seen.

I have to admit I haven’t seen Oli now for two days as I have a very important Uni’ interview next week that needs a lot of prepping for.  It hasn’t been much fun not seeing him,  especially when I know he has been having a difficult time, however now I know that this afternoon he has been chatting, laughing, exercising, and more  I couldn’t be happier.

I have proof of happiness, too.  At some point this afternoon my phone rang with Oli’s number showing.  My immediate thought was along the lines of “who could be ringing me from Oli’s phone?”, who else but the man himself!!!  Yay!  I couldn’t believe he felt well enough to even look at his phone, let alone call.  What’s more, we had a good few minutes chat, mostly from his end as I couldn’t stop repeating “I can’t believe you”re calling!”.  This evening more happy surprises came through as Oli sent me some text messages, and because he managed to link a few together to make another conversation put me back on cloud nine!

This really represents a massive breakthrough for Oli’s mental state, he’s had such a bad time over the past few days, being stuck under a big black cloud and taking the big black dog for a walk.  It’s so great to hear from him and know that he really feels happier and is able to look positively at his achievements and see what’s ahead in a positive light.

We’re on such a journey together, all of us, and we’re going to come across many ups and downs.  It’s so important to treasure the good as it’s often what can help you get through the bad.  It’s also really important to have a big brother to give you a kick up the pants every now and then!