Archives: Exercise

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.

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!

Sorry, have had that song in my head all day and it has had to come out somewhere! 

Oli has been on the exercise bike today!!! 

He managed 4 whole minutes and, much to his surprise, conducted a conversation whilst cycling.  Anyone who knows Oli, knows anyone with CF, has CF, is just plain rubbish at exercise (that’s my category), will understand that is pretty amazing and is definitely ‘up there’ in Oli’s list of All Time Greatest Achievements Ever.

His mood has remained buoyant and although I got there too late to witness it, I have it on good authority that he has been excited about all the things he will be able to do.

A slight bump in the road to recovery means that tomorrow morning Oli will be going back to theatre for a very brief operation to tie up something that is leaking very useful fluid (isn’t my medical knowledge astounding?!).  I have been told several times what the actual reason and procedure is but my brain is also leaking very useful knowledge.

This may sound like a step back and it will put him back on epidural and catheter again but it is in fact a really simple op (fingers crossed there are no complications).  Once Oli is over the sleepiness of the anaesthetic, he should be able to be tube free in a week or so.

I will of course let you all know how tomorrow goes but please be reassured that I’m not concerned about the op and so you guys needn’t be either.  I’ll let you know when to worry and when to cheer (and when to boo and hiss, just as it’s nearly panto season).

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! 

Oli’s progressing steadily now.  Physically it seems like everyday another tube/drain/wire is removed (I strangely now have an image of ker-plunk! – forgive me, I am very tired).  Even his catheter has been removed today, which although meant a big ouch, also means that the team are happy with his fluid outout and also means that he will have to physically exert himself a little everytime he needs to pee (sorry, too much information).

Mentally, he is taking things hard.  A lot of it due to the remaining tubes still pumping in various drug cocktails.  Anxiety is a big issue right now but the nurses are fantastic with him and have clearly seen all of this behaviour many times before.  Alongside the anxiety are confusion and disorientation, both of these add to the anxiety.

It is still very important to remember that it is early days, as I am writing this, Oli was just about to head into theatre this time last week.  Oli is progressing very well and hitting all targets that the team look for and is certainly not taking any steps back.  Physically, Oli is nigh on exactly where he ‘should be’ (a term used very loosely as recovery is a very individual thing and can’t really be generalised).  However, he is still very scared that something might go wrong. 

The support you have all given Oli so far has been phenomenal.  Please don’t stop your prayers and good wishes for Oli as he needs them just as much now as he did a week ago. 

Please also remember the donor’s family as I can imagine they are still very much mourning the loss of a loved one in the time when a lot of people are in high spirits for the approaching Christmas. I’m sure they’re not feeling too Christmassy right now and could do with lots of love heading their way.

Lots of love from me x

Well, someone was listening to me last night, because today has, indeed, been a better day so far. That’s not to say things are all fine and dandy, or that the picture is yet all rosy, but side-by-side with yesterday, today has been a Good Day.

I managed to get almost straight to sleep last night, sometime after 11pm, which is rare forr me these days. Not only that, but I managed to sleep quite solidly, too – no constant waking to switch position or readjust myself. It may have been thanks to having fiddled with Neve and pushed the pressures up ever-so-slightly, or a slightly improvement on the chest front, or simply thanks to complete exhaustion and my body not having any other choice but sleeping it off. My guess would be it was a healthy mix of the three.

Bizarrely, and somewhat annoyingly, I woke up bright-as-a-button(ish) around 5am and couldn’t get back to sleep, no matter how hard I tried. I had planned to lay in a bit today and do my morning dose a little later than usual, but given that I was awake anyway, I decided to switch the plans and get up early and get them out of the way, which would have the knock-on effect of allowing me an earlier night tonight.

I got up, got my dose running and sat myself a the computer to surf around and catch up on the over-night writers’ strike news, during which time my chest was doing all kinds of weird things, making me breathless one minute and fine the next, and I developed a bit of a killer headache.

By the time my drugs had finished, I decided it’d be a good idea to try to get some physio out of the way before I got myself back to bed, so I did another very uncomfortable session – very hard work again. Having said which, I definitely felt the benefit afterwards, even through it didn’t feel like I’d cleared a lot. I did my anti-biotic nebs and then took myself to bed around 9am.

Interestingly, for those who keep tabs on this sort of thing, 9am is also the time that the construction workers begin work on resurfacing the road outside the front of where we live. With the sun beating a nice, hot set of rays down on the bedroom window, keeping them shut was out of the question, so keeping the noise out was also not a part of the plan.

As it happened, noisy as they were, I needed sleep more, and I managed to doze on-and-off for another few hours till the early afternoon.

I rolled out of bed feeling much better for the physio and sleep, grabbed a cuppa with K and chatted for a bit, talked to my ‘rents to catch them up on over-night progress and then headed back for more physio. It was a much better session than this mornings, and much easier, too, making things look brighter already.

After physio, I got some calories down me and then headed back to bed to chill out with K and watch the first ep of the first season of 24 – a season I’ve seen but K hasn’t and is next on our TV-DVD marathon. I’m amazed at how much I don’t remember from the first time it aired, and also at how much of what I do remember they’ve crammed into the first ep – there must be a whole heap more that I don’t remember to come, which is promising.

After chilling in bed for a while, K gets up to do some more revision and I sit and read GQ for a while, before K heads off to college and I do my 3rd physio session of the day. I’m determined to crack the back of this while I can.

Physio out of the way, I jump online for a while and do a bit of Chrimbo shopping (have to bow to the inevitable eventually, I suppose) and look into a couple of other random bits and pieces while the Shepherd’s Pie Mum made me yesterday cooks.  I sit and eat it while watching the last episode of Extras from the DVD that I’d never got round to seeing, then wash up and get back to the study, going over a couple of old scripts till K gets home.

We watch some programmes from Sky+ and I do some more physio (a really good late-night session, actually), and before I know it my evening drugs are all done and it’s time to hit the sack.  Things are still very up-and-down, and I suspect they will be for a good few days yet, but today’s been a massive improvement on yesterday, and that’s a big step forward.  Well, at least a little one.

So Saturday night was a bit of a bump, but Sunday and Monday have been a much more even keel – I’ve stayed resolutely on the positivity band-wagon, although I may have slid sideways a couple of times.

Yesterday morning vanished into nothing – a brief wake-up call at 7am to do my morning drugs dose, but the rest disappearing under the covers after another late night.

Shortly after the turn of noon, having stumbled out of bed, K’s Dad swung by with the visiting boyfriend of her Hungarian cousin.  Actually, technically, I don’t think they’re cousins, but once you get into the Hungarian side of the family I’m afraid I rather lose track of her clan.  I can only just keep track of the English side, but that’s because they’re inconsiderate enough to have 2 Uncle Peter’s, which is just foolish if you ask me.  I don’t see why they couldn’t have drawn straws for a name change to help me out just a little.

I digress.  T’s English was immaculate (handy, considering the state of my Hungarian) and it was really nice to meet him and chat.  K was revelling in getting first-hand details of all the goings on with her Hungarian cousins, one of whom is due to have her first child any day now.  K was keen for T to let his other half know that being an Aunty is “the best thing in the world”.  I ventured to point out that I daresay being a Mum might be considered to top it, but I always get shouted down.

They didn’t stay long, since K’s Dad was taking T off for a round-the-houses meet-and-greet of the rest of Team H over lunch.  I should think he got back to his apartment in London absolutely shattered after getting through the whole gang.

In the evening, we headed over to my ‘rents to catch up with them and have a gorgeous roast.  I know everyone always says it, but my Mum does the BEST roast dinners in the whole wide world and last night she even managed to out-do her usual high standards.  It was but a whisker short of perfection. (The whisker being Tio’s, their lovely little cat, who brought us a wee mouse as a pre-dinner snack).

After dinner we played chilled out and played games for a while before K and I headed home as everyone but me had to be up for work in the morning.  Not that it means I get a lie in as I had to be up for my drugs anyway.  Sometimes you just can’t win.

Today has been a generally un-taxing day.  I’ve not felt 100%, but it’s most just tiredness, largely caused by a busy weekend and the usual end-of-IV-run lack of decent sleep.  Having to be up every 8 hours to do drugs doesn’t sound like a bind, but when you figure it means you only ever get around 6 hours of sleep at a given time, it starts to wear you down a fair bit.

I did manage to catch a movie I’ve been trying to peep for a while now, which actually ended up disappointing me greatly, so I’ll not even go into detail here.  Suffice it to say I’ll not be awaiting the next QT flick as eagerly as I did this one.

Tonight, once K got in from work, apart from nebs and physio, plus another 20 minute bike sesh, we’ve basically just been in front of the telly finishing off the third season of Lost, which just totally blew us away – it’s amazing.  If you’ve never seen it, you absolutely have to go out and get all three seasons in their box sets now and check them out – they’re completely compulsive viewing.

Now there’s just time for another dose of drugs and a catch-up on some of last night’s telly while they go through and it’ll be off to bed and start again in the morning.  I’m determined to be productive tomorrow.  Watch this space.