Archives: Chest

I’m back.  24 hours back, in fact.  Stupid viruses.

After hurling myself inside out for 24 hours, I managed to stop only to discover it had either caused or masked a lovely little infection, for which the docs started plying me with IV anti-biotics and wouldn’t let me home.  Wouldn’t let me home for 4 days.  Grrr.

Still, I’m back now and basking in the warm glow of a doting girlfriend and freedom to do what I want (as long as it involves sitting spending quality time with K).

Also feeling very excited about the Organ Donor Taskforce report published yesterday (which I would link to, but let’s face it, how many of you are going to wade through 66 pages of Government-commissioned report if you don’t have to?).  Essentially, it recommends a number of not-particularly expensive solutions to current problems within the current donor/transplant network in the UK which they are confident will – if implemented as the Government say they will – result in a 50% increase in the number of transplants in 5 years.

Amongst other things they talk of making assessment for donation the norm, rather than the exception, in end-of-life care, as well as dramatically increasing the number of Donor Transplant Coordinators and retrieval teams, all under the coordination of a central organ donation organisation.

This really is a massive step forward for organ donation in this country and is actually far more important than the possibility of switching to a system of presumed consent, as has been discussed in the news this week.  The so-called “Opt-Out” system may well increase the number of available organs, but without the infrastructure changes behind it, is likely to do very little to actually increase the number of transplants that are carried out in this country.

That said, the presumed consent debate is a fantastic one because it’s getting everyone to talk about organ donation.  If the 70% of the population who say they are happy for their organs to be used after their death all signed up to the organ donor register, there would be no need for an opt-out system anyway.

Other than that, I’ve got very little going on at the moment – keep trying to plan things but having stupid lung-related hiccups getting in the way all the time.  Anyone would think that 8-weeks post-transplant isn’t very long to be trying to get up and about and leading an active, multi-disciplinary lifestyle.  Honestly….

So here I am with my butt parked in the very same room I was sat in almost precisely 8 weeks ago waiting to be told my life was about to change forever.

Thanks to the wonders of the now famous (or is that infamous) Norovirus, F-East ward of HAREFIELD beckons again. I don’t remember my last visit here being quite so deeply involved with vomit and isolation, but there’s a weird sense of calm and good omens that comes with being back where my journey began two months ago.

As it happens I don’t think I’ll be here much longer – I was admitted yesterday mainly so that they could give me IV fluids through a drip to replace all the stuff my stomach was resolutely rejecting and sending back out from whence it came, and also to give me my immunosuppression IV as well since there was no chance of me absorbing the oral pills.

I’ve a bit of an infection rearing its head in my chest, but that’s much to be expected when I get knocked back at the mo, and should be easily sorted by a short course of antibiotics which shouldn’t keep me in here.

K has written a nice pleading note to the docs in Scrabble tiles (we couldn’t find any paper) so I’m sure doc C is going to be convince by her superior medical knowledge and eject me straight from his rounds in the morning.

Watch this space, I guess…

I had a true yo-yo day today.

Clinic visits at Harefield run something like this:

Morning (around 9.30) – Arrive, register, sit and wait for 5-30 mins (depending on busyness), go in and have bloods done, get weighed and have obs checks (blood pressure, pulse, oxygen sats etc).

Get given cards to take to lung function (or RFTs as it’s known in-house) and X-ray and/or any other tests they may require up to and including ultrasound, ECG, CT scan etc.

Finish off those tests and report back to reception, where you are given a rough time to return in the afternoon, sometime after 2pm.

This morning, I had completed all required checks and balances (to great satisfaction – RTF going up, X-ray looking good) by 10.15am, and returned to be told that Doc C would get round to seeing me around 3.30pm, but to be back by 3 in case he ran early.

For those of you not too quick at maths, that’s well over 4 hours.  I looked at Dad and he looked at me.  Jokingly, I offered up, “Go home for lunch?”

On more serious consideration, however, we realised that if Doc C were running late when we came back, we’d not be back in MK in time to get to the GP surgery to pick up my prescription I needed and collect it from the pharmacy near my ‘rents house (the great little place that sorts all my druggy needs).  On further thought, it occured to us that the 45min-1hour drive it would take to get back home, plus hour-and-a-bit to do what we needed to do, including lunch, plus the drive back still left us with a good half hour to spare.  So home it was.

The clinic appointment itself went swimmingly.  Doc C is really pleased with my progress – all my infective markers are right down, my liver function is almost back to normal, the other bits and pieces in my blood which were low are coming back up.  My lung function is steadily increasing, as should be expected as I start to get out and about and to exercise more and he’s now seen fit to take me off two of my anti-biotic tablets, which brings me down to a total of 10 Tx-related drugs, plus 2 CF-related drugs.  Cracking.

This evening I’m feeling pretty tired, but not too bad.  I’m looking forward to two days at home tomorrow and Wednesday, then another clinic visit Thursday.

Keep well.

It’s funny, you know.  I was just coming on here to quickly bash out a blog and thinking over what I’ve been up to and I thought, “it’s been a nice, lazy Sunday.”  The thing is, though, it really hasn’t.

All right, I did sleep through *almost* all of the morning (I did see some of it…), and I did watch about an hour of football/rugby during the day, too.  But my major achievement of the day has been in being active almost all the time I’ve been up.

For those of you keeping track (like me) of all the firsts I’m experiencing at the moment, there’s another to add to the blotter, that being the first walk down to the corner Tesco to get a paper – and a fitness magazine, get me.  Lovingly measured by our trusty friend Dazz, I can reliably inform you I walk all of half a mile and a bit, albeit downhill, and felt strong enough to walk back up again, too, had we not already arranged for Dazz to meet us there in his car, lest the return journey prove to be too much to handle.

I was so happy to have done it – it was a lovely walk and it showed me just how fit these new puffers of mine are.  More than that, it showed me that my leg muscles are also starting to catch up.

Not only did I manage to walk the half-mile to the shop, but I also did a 15 min session on the exercise bike this afternoon, too.  It was hard work and my legs really felt that one, but I felt great getting off it and feeling like I’d really been working myself.

On top of all my exercising, I also made a start on clearing up the study, otherwise known as the bomb-site.  Also took on cooking duties for the night and helped out with the washing up, too.

What’s really hit me about all of that, though, is not so much how tired it made me – because by the time I’d finished drying up and then wiping the kitchen down, believe mme I was cream crackered – but how quickly I recovered.

When I flopped on to the sofa with everything done for the night around 9pm, I had the familiar pain in my lower back which would come on whenever I’d done too much before.  The difference is, back then it would last the rest of the night and I’d be totally out of commission, whereas tonight, it’s barely an hour later and the pain’s gone off and I’m feeling fit enough to do anything that needs doing before bed.

It’s such a bizarre sensation to be able to recover from things quickly – to not have one simple task wipe you out for the entire day.  I LOVE IT!

Not much more I can say to that, really.

It feels like it’s been an age, when in fact it’s only a little shy of 6 weeks since I was last sat here at my desk, my Mac, in my study writing up a summary of my day on the waiting list.  What a lot has changed in those six weeks – what a remarkable six weeks it’s been.

I keep having to catch myself from protesting at how long it’s taken me to get back here, or to stop myself from trying to do things that I’m not supposed to do yet because to me it feels like months that I’ve been away and out of the loop.  It’s been fantastic to receive all of your messages, cards and comments, but they are about the only things I’ve been collecting from my “life”.  I now have 6 weeks of unopened mail to go through (except Christmas cards, which K opened – funny how she avoided the bills…) and an inbox which has just downloaded the 420 mails I’ve received since my transplant and that’s after K had a bit of a clearout not too long ago.

It’s so funny to see myself moving freely, doing things around the house (I’ve been cleaning this evening!) and generally getting on with things in a totally normal and nonchalant manner.  Already things are becoming second nature to me and I don’t think twice about them until I’ve done them and I sit with time to reflect,  or until someone points out just what I’ve done.

I’ve definitely tired myself out today, with a trip to Harefield this morning for bloods, a good, brisk 10 minute walk along the lakeshore this afternoon and then an hour’s manic unpacking/cleaning when I got home tonight, but it feels wonderful to have heavy eyelids and not heavy lungs.

I must add, for those of you thinking anything was amiss – the cleaning I was doing was only because we swapped our bins over and I had to clean off the old one to be used as our recycling bin as the new one is more hygienic for kitchen waste.  K has actually, with the help of our great friend Dazz, completely overhauled the flat and scrubbed it top-to-bottom without missing a single nook or cranny anywhere at all.  All traces of my former life have been whisked out – no Neve, no concentrator, no oxygen cylinders – and the place is positively sparkling.  I can’t explain properly just how hard they’ve worked to make sure it’s ready and bug-free for me to come back to.

The slight downer on the day today (and it is only very slight) is that my Tac level has gone up to 20 again (they’re aiming for 10, remember), and that’s only after taking 3mg, so goodness knows what my body’s up to.  I’ll be off for more bloods in the morning and should get chance to chat to my Tx team about what’s going on and also about the scar pain.  The trouble with going to hospital on a Sunday is that it’s only the weekend cover who are on and you can’t guarantee that they’ll be the Tx team (which they weren’t today) so it’s hard to get things sorted.  Tomorrow should be a different pot of pike, though, and I’m sure we’ll get somewhere with it all.

My walk this afternoon was great – again an amazing experience to get myself out of breath and feel it was my legs that were going to give up before my chest.  In fact, after doing the physio’s exercises yesterday, I couldn’t half feel it in my calves today during my walk.  Note to self: don’t forget to stretch!

New Year’s eve tomorrow and I’m looking forward to seeing in 2008 with a sense of optimism and possibility rather than worrying about what’s just around the corner for me.  Hope you and yours all have a great one and if I don’t blog tomorrow, catch you next year!

So I’ve managed, it appears, to spend a couple of days without sending my Tac levels sky-high and spending all dy hurling, which is nice.  I have, however, managed to do something to my left-hand side, which is causing me a great deal of pain right now.

We think – in our infinite wisdom (read: mildly-educated guesswork between one trained nurse and one former-CF patient, newly transplanted) – that I may have strained the stitches on my internal wound.  Back visiting the flat on Christmas Eve, our little nephew came running into the study to see what we were all gauping at on the computer and without thinking I automatically hoisted him up on to my lap.  We reckon the effort of lifting him may have pulled on the stiches (which won’t have fully healed and dissolved for another few weeks yet) and that’s what’s causing the pain.

The biggest problem is that it’s right on my Lat muscle (the sort of angular one that comes down under your armpit), which means just about any body movement twinges the stiches and gives me a nice, healthy, bracing shot of pain.  I’m dosing myself up with Paracetamol and Tramadol at regular intervals, but it doesn’t seem to be doing a whole lot.

Still, the plus side of all of this is that the pain in my side is literally the only thing I’ve got to moan about.  Everything else is absolutely brilliant – I’m walking around freely, my appetite is fantastic, I’m enjoying my days and sleeping pretty well through the nights.  I’m full of hope and excitement for the New Year and just wondering which of my many possible projects I want to tackle first once I’m up and running.

Today I’ve had a day off from going to Harefield, which was nice as it meant I got a bit of a lie in.  I had a wonderfully lazy Saturday morning lying in bed with K reading the paper and chilling out before I got up and had a nice soak in the bath (which did wonders for the pain in my side). 

The rest of the day has been spent in similarly chilled fashion, watching TV, sleeping a little and doing the mini-exercise regieme that the Harefield physios set me before I left.

Tomorrow, K and I hope to get back to the flat to try spending a few nights there over New Year to see how we get on.  At the moment I’m lucky in that I’m here being pampered by Mum and Dad but I really need to get back on my own two feet.  While I know that K’s going to be there to do things for me if I need them doing (which, doubtless, I will to start with), it still feels like a pretty major and slightly scary step.  But at the same time, it’s wonderfully exciting and I can’t wait – it’s one more step on the road back to “normality”.

We’re just a couple of days away now from the end of the most amazing year of my life – one that’s seen more ups and downs than  an entire day riding Nemesis at Alton Towers, but one which will no doubt stick in my mind forever, for all the right reasons.

Despite everything that’s gone on in the last six weeks and despite all the hardships of the year before that, I’ve done some things this year that I’ve always dreamed of doing and can’t wait to have the opportunity to do again. 

K and I sat watching a film last night which summed up my attitude to life perfectly.  Funnily enough, I don’t normally credit Adam Sandler movies with being all that profound, but watching Click reminded me that life is about every experience you go through, good or bad, and that every single thing you go through helps to shape you as a person.  I would not swap a single day of the last 12 months because the great ones were the greatest because of how hard I had to fight to get through them and the bad ones were the worst but taught be more about myself, my strength and my resolve than a million sessions with a phsycologist or life coach ever could.

Here’s to meeting with triumph and disaster and treating those imposters just the same.  And here’s to 2007: year of wonders yet to cease.

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.

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!