Monthly Archives: December 2007

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.

2 sleeps to go!

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

Or lunch to be more precise.

It was awesome, so, so cool to get Oli out of the hospital grounds and back to normality.  It was unfortunate that it was a bitterly cold day but even that didn’t bother us today!  We went to a lovely pub, had lovely food, good conversation and generally a lovely time was had by all.  Oli is still frail but that is to be expected, even Superman needs time to build up strength from a life saving operation.

The last time we went out for a meal was my Dad’s 60th, almost a year ago.  Thinking back, that meal seemed harder for Oli to cope with than todays jaunt.  There are constantly so many things that are already improving his quality of 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!