Archives: Family

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.

Oli’s coming home on Thursday!!!!!  small print – as long as nothing bad happens in between now and then.

Yaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaay!  I’m so excited, it’s going to be so wonderful to have him home and be able to chill out on our sofa and watch movies and drink tea!

Yesterday we had another great day together, my parents took me over to see him and the four of us went for a cup of tea in the League of Friends pavillion.  It was lovely and so normal just to be sitting and chatting together.  My parents then left and I stayed behind with Oli for the rest of the day.  Oli’s parents visited and then two of our bestest buddies came to see him and to take me home in the evening.  Throughout the day I just kept looking at Oli and seeing how happy he looked and how healthy.  We went to the canteen with the guys in the evening and it was almost normal to be sitting, having a giggle and a cuppa (only almost normal because a hospital canteen is never quite venue of choice to go with friends).

For the past few days Oli has had to put up with hearing nurses and doctors commenting on how he should be ready to go home soon, today they’ve finally agreed that Thursday is the day, hooray!

I can’t wait to have him home, it’ll be great to have him here as our nieces and nephews get excited as Christmas draws nearer.  We can share in the excitement for the first time in ages and Oli doesn’t have to worry so much about measuring his energy reserves or being scared that it might be his last.

I got a letter from UCL today, unfortunately I didn’t get in.  I’m a bit gutted but in the grand scheme of things we already have so much to be thankful for, I’m not going to waste time or energy feeling sorry for myself.  Nothing can ruin how happy I am that Oli is coming home x

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

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!