Archives: Hospital

This is going to be a short summary of how we got to where we are, but suffice it to say that the end result is WE’RE GOING TO HAWAII TOMORROW!!!

It’s been a crazy last 8 days, starting with feeling slightly odd leading right up to Saturday’s blog detailing my admission. My lovely new iPhone then decided to stop working as an internet-receptacle so I couldn’t update the blog any further.

The docs essentially said on Saturday that they a) had no idea what was wrong with me but b) that it looked pretty bad. Although the X-ray techs refused to CT me, the docs between them had come upon the summation that it was some kind of chest infection which meant that whatever happened, Hawaii was off.

When they came around Sunday they told me I was well enough to go home – they still didn’t know what it was but the 24 hours of oral antibiotics they’d had me on were seeing my infection markers dropping and things looked OK. I thanked them and they left.

Them then team leader reg for the weekend came back in and asked about Hawaii. Essentially, he said, they needed to ask themselves 3 questions as my doctors:

1) Was I well enough to go?
2) Was I a danger to other passengers on a plane (ie, through Swine ‘Flu etc)
3) Was I fully insured in case anything worsened or happened beyond what they’d observed.

The answers, as he gave them, were:

1) Yes, as far as they were concerned.
2) No, as they didn’t believe I’d had Swine ‘Flu in the first place
3) They would need me to see.

Cue a frantic rush around last night to try to find out what our insurance policy covered. What we came up with was that because the admission happened before I flew, the chest infection then counts as a pre-existing medical condition which they must be made aware of or no treatment related to it in any way will be covered while we’re away. Being a Bank Holiday weekend, this meant that we were now unable to inform them of the change until we flew, which essentially voided the policy.

Cue frantic scramble to find a company that would cover me for CF, lung transplant and a resolving chest infection – all three of which would need to be covered if I needed any treatment for an exacerbation of my current condition. After a pleasantly home-bound night’s sleep we spoke to a company this morning and – in brief – we shelled out a very large amount of money to ensure we didn’t have to claim back a slightly very larger amount of money for canceling the holiday and we were set to go.

Cue frantic running around the Bank Holiday shops today to fill my uni shopping list, my holiday shopping list and still get back in time to pack it all into boxes, bags and suitcases in time to head over to the ‘rents this evening for dinner and sleeps so they can run us to the airport at silly o’clock tomorrow morning.

It’s been a total whirlwind and both K and I are pretty overwhelmed by it all, but the bottom line is that we’re on our way to Hawaii. And when I get back I’ll have less than 12 hours in Liverpool before the start of my first ever term of uni. At the end of it all, things couldn’t really be more exciting. I just wish I’d done it all in a slightly more boring and less melodramatic way.

I really should learn to keep my mouth shut. Less than 24 hours after confidently blogging that I was on the mend I find myself on the ward at Harefield stuck in my own private episode of House.

I woke on Friday with a much chestier cough and weakness in my legs and – after chatting to my GP and after he chatted to the registrar at Harefield they decided that the best bet was for me to go to Harefield and get properly examined and worked up by the pros.

The biggest down point appeared to be that it was looking less and less like something that is fixable by the time we’re due to leave for Hawaii. We’re fully insured for it, but to be honest the money was the last of our worries.

Arriving at Harefield I was popped in a room and prodded and poked about a bit before sitting down with AP the reg to go over the options.

K and I, being big fans of Hugh Laurie in House, almost burst put laughing when AP actually said, “differential diagnosis”.

There seem to be 3 viable options did everything this week and the condition I’m in now: 1) Swine ‘flu, plain and simple, for which they can send me home with Tamiflu and let us go to Hawaii. 2) A recurrance of the CMV I was admitted with last year, for which they can send me home with a course of Valganciclovir and let us go to Hawaii. 3) A chest infection, either as a result of, independent of or additional too some kind of ‘flu or virus, which would be game over for Hawaii

So I’ve now been bled dry and X-rayed, but the blood results won’t be back until later this morning/afternoon and I’m down for a CT scan at some point today after the X-ray was inconclusive.

It’s a pretty horrible feeling sitting around waiting for test results that will dictate whether I can go on my guest holiday in 6 years or if, like May 2008, my body has conspired to stop me having ant foreign fun at all.

Keep your fingers crossed – I’ll update the blog & Twitter once I know the score. Suddenly “Smile Through It” seems ever so appropriate again.

All this rushing around doesn’t seem to suit me. No sooner had I blogged about all the necessaries for holiday and uni prep than I started feeling a little pesky with a bit of a sore throat. Monday night I woke at 4am with a roaring fever and raging headache splitting my very delicate and uni-bound cranium in two.

After fighting for more sleep, I eventually hauled my butt out of bed at 8am to spend an hour tossing my cookies in the bathroom. When I managed to stop hurling for five minutes I dragged myself to the phone to call the ‘rents and tell them I suspected ‘flu.

Funnily enough, at the time I was more concerned with not passing it on to K as having it 8 days before we’re dye at the airport for Hawaii is bad enough but if it were to gestate a little longer and hit her 5 days before we flew, our holiday could be in very real danger.

Mum and Dad thus rode to my rescue and I’ve been holed up in quarantine at Chez Parental for the last 3 days, with regular GP visits and Harefield consultations. Tuesday was the most concerning day as I kept being sick, a very bad thing when my new lungs are dependent on oral immunosuppressants to keep working properly.

One very sore injection in my left butt cheek later (still hurts, by the way) and the vomiting, though not the nausea, stopped and from there on in I’ve been improving all week.

Now all but mended, I’ll be heading home tomorrow to finish off my uni and holiday packing which I’ve so far abandoned K to. My lung function is looking good, so despite the slight cough I’ve got I’m confident there’s nothing serious going on.

It’s been a pretty rubbish week, bur with so much coming up in the next few weeks I’m kind of glad it happened now and hasn’t – touch wood – spoiled either the holiday or my first weeks at uni.

Lots to do and little time, but still enough to reflect on the marvel that it post-transplant recovery. Had I fallen I’ll a week before flying abroad pre-transplant there’s no way I’d have been fit to leave the country. Thank heavens for the gift of life – a phrase that gains more meaning and resonance each and every day.

There was I hotly anticipating my return to work this week and getting really rolling on Remembrance when I was flattened again. This time not by small children, but by some kind of a stomach bug. It’s left me totally wiped out and exhausted for the last 3 days and I’m only just getting back up to speed. Sucks quite a bit.

I have to confess I’ve been a little worried about things. If you’ll remember, last year’s CMV infection started out with weird pains in my chest and stomach, so a recurrence of similar and apparently inexplicable symptoms has rattled my nerve a little bit. I’m sure it’ll be fine, but I think after so long of being well my mind is maybe a little pre-programmed into expecting something bad to be due me. A stupid thought process, to be sure, but one that’s hard to avoid after spending 25 of my 27 years as a seriously ill person.

Anyway, the upshot of all this is that I’ve achieved nothing at all this week, which is obviously sub-optimal. Added to which, since I’ve been doing nothing but lay in bed all day, I’ve got into a horrible sleeping pattern and am up until past 3 in the mornings at the moment – never a great thing for aiding recovery.

I’m due in to my GP surgery tomorrow morning for some blood tests and I have a scheduled appointment at Harefield on Monday so hopefully this will all either have cleared up by then or we’ll be able to tell exactly what it is.

In the meantime, the one thing I have managed to do is to draw up a shortlist of DP candidates, who I’ll be meeting next week to have a chat with and go from there. It’s exciting stuff, I just wish I had more energy for it right now.

Since my transplant life has taken on a whole new slant. For the most part this is absolutely, 100% undeniably awesome – being able to do the things I want to do, not having to worry about all the rubbish that went with the battle against CF. But every now and again something hits you with a bump, or a thud, or a massive hammer-blow to the head.

I got a phone call from a friend’s husband this morning saying he’d just been off the phone with the mother of a friend of mine from years back. She had CF and we used to chat a lot about all sorts of things – frequently how rubbish CF was – and make each other laugh and work through things when we needed some support. Sadly, she passed away this morning.

There’s such a complex mix of emotions post-transplant. On the one hand, I’m so deeply saddened that another young life has been lost to a disease which needn’t take people away from us. On the other hand, I’m so deeply grateful to my donor and their family for giving me the chance to retake control of my life and battle on to achieve what I want to achieve. It’s both deeply upsetting and hugely motivating when you hear of someone losing their fight.

Just last week I was in Oxford for my annual review with the CF team. It’s really a bit of a formality, as the CF no longer affects my lungs, but it’s still important for them to keep an eye on the other parts of my body CF can affect. It was such a great day though, epitomised by one little moment.

As the physio was doing my general assessment, including posture and other things, she had to listen to my chest. I’ve known my physio for a long time – over 10 years I’ve been going to the same clinic with the same physio now – and as time passes and you go through phases of ill-health, better health, dreadful health and have the kind of scares I went through, physios are the people you naturally seem to turn to. Most PWCF will tell you that their physio is the person they confide in the most, more often than not because they are the member of your medical team you spend the most time with due to the frequent rounds of physiotherapy needed to keep the chest at some vague approximation of a functioning level.

So my physio is doing her assessment and I lift my shirt for her to listen to my chest. I used to know I was ill when the physio or doc would listen to my chest and pause the stethoscope in any one place for longer than a single breath. As she listened to my chest, she paused in one particular area and a dread went up me, until I glanced down and saw a smile creeping over her face as she listened to my now-soundless chest.

For years all anyone had been able to hear on my chest was the crackly static of blocked and infected lungs, now there’s nothing. And as she listened, my physio couldn’t hide her big, beaming smile at the fact that there’s nothing for her to do on my chest any more.

I’m enjoying a life I never thought I would or could, thanks to the generosity of one family, but the price I have to pay for the extension I’ve been given is seeing people who could so easily be like me losing their fight.

This is why I work with these guys and this is why I’m making Remembrance – if they’re not here to reach their dreams, I damn sure better make an effort to fulfill mine. If you want to buy in to my dream, go here to find out more.

Today I finally finished my run of 4 talks in 3 weeks with an address to the CF Trust’s regional conference in Oxford.

Rosie, the Chief Exec of the Trust, originally asked my consultant to come along and talk about the adult service, but she couldn’t make it so the baton was passed to me. I love doing talks and things in general, but especially for the Trust. And even more extra-specially when it’s to talk up the amazing team at Oxford who helped keep me alive long enough to reach transplant.

I would pop the text up on here, but it was a 30 minute speech and the text is close-on 3000 words, which is quite a good deal mroe than anyone really wants to read on a blog, but if you really, totally desperately want to read a copy of it, let me know and I can mail it to you.

It went really well – by all accounts so did the entire day – and it seemed to strike the right notes I was trying to hit. It’s always hard to pitch a speech to parents of people with CF, particularly some very young children. You need to make sure you’re not belittling the task that lies ahead, the enormity of dealing with all the crap that life with CF throws at you, but at the same time it’s important to let them know that CF doesn’t strip your life away of all meaning or ability to have fun and it certainly doens’t mean you’re going not going to be able to make something of your life.

I think – I hope – that I managed to pitch it right this time. Certainly all the feedback I received from the day was positive, but then it’s got to be a pretty awful and borderline insulting speech that will make anyone come up to you afterwards and tell you it was rubbish, so it’s good not to get too carried away.

It was nice, though, to have a chance to catch up with the team who came along. Clinic time is so precious I’m always reluctant to stay and chat too long, but today I got there at lunch time with a chance to sit down with them (and my parents, who decided to come along for the day) and have a really good catch up and chat about things – medical and non.

On the way home I developed a killer headache and was running much later than I’d planned, so I had to pull out of a rehearsal visit in Northampton for the project I’m working on with the Royal and instead couldn’t do much more than veg on the sofa and eat a bowl of soup. Really bizarre, hard-core headache, it was, but it doesn’t seem to have recurred as badly since, so it must have been a one off and probably thanks to dyhdration more than anything else. Was a sucky end to the day, but it had been a good one for most of it, so no real complaints.

The alarm arouses us both at 7am and we roll somewhat lazily out of bed, showering, dressing and packing an over-night bag to take with us.

I run K down to the hospital for an acupuncture appointment and head back to the flat to collect the bits and pieces we’d realised we’d forgotten on the way down there, most notably the iPod, which would have lead to some 5 hours of driving forcing Radio 1 on us.

I get back to the hosp just as K is coming out – impeccable timing – and we head straight off for Oxford. We get there surprisingly quickly after a near-miss with a mini-coach which decided to pull across my path while I was trundling along the country road at 60. We park up at St Giles and walk down the freezing cold street round the corner to Blackwells, the awesome pre-Borders Borders at the heart of the student world of the town. K’s never been there, so I delighted in showing her the wonderful underground cavern that disappears beneath the house-front of the shop on the main street.

We spend half-an-hour wandering aimlessly around and I grow slightly disappointed at the absence of a lot of the books that got me excited last time, although knowing how much I could have spent if they were all still there, it’s probably a good thing they weren’t. On our way out, we head up a staircase that I’ve never ventured up and we find ourselves in a whole new part of the shop with modern fiction (classed as anything from 1950-odd) and a brimming children’s section.

K finds a whole load of her new-favourite Jasper Fforde books – a necessary since I’d been nice and picked some up for her without realising they were an official series and so needed to come in a specific order. Order restored to her collection and a bizarre comedy book bought for our host this evening, we departed across the street so I could wander through their Art & Film shop, where I am torn between two books and end up getting one which will hopefully positively impact the production levels of the Live Life Then Give Life docs that we’re shooting through the year.

We wander back to the car through the positively freezing winter’s air and pick up a copy of the Big Issue from a poor guy who looks like he’s on the verge of frostbite but still has a cheery smile on his face and is genuinely grateful when we pick one up. We’d passed him on the way in to the town, but not had change and I think he recognised it as the classic excuse for not buying – he seemed really surprised that we’d actually gone back and got one.

We headed up to the Nuffield to get my bone-density scan done, just a precautionary scan to keep a check on how my calcium levels are doing and how brittle my bones may be as it’s pretty common with CF to develop osteoporosis and can be exacerbated by some of the transplant drugs I’m on.

Post-scan we head across the road (and round the corner a bit) to the Churchill to catch up with my CF team, who now I don’t have my port in anymore, I have little reason to see apart from the odd check-up or annual review. It’s great to see them all and catch up with the gossip including flicking through the slideshow of one of the physio’s weddings which was being planned when I was last incarcerated in the Churchill – it seems like such a long time ago now, it really is like another life.

Catch-up out of the way, we leave them to treat the patients who need them more than me and get on the road up to Bradford. The motorways are pretty clear, barring a little bit of late-afternoon traffic around Sheffield and we hit the M62/606 around 5ish, then whack the Sat-Nav on and hunt out Dazz’s place of work, where we drive straight past him in the street. The man collected, we head over to Shipley to his new flat and commence the warming of said homestead both literally (given the chill-factor) and metaphorically (it being a new pad).

We chill and chat and eat and watch DVDs and generally have a giggle, while I spend half-an-hour sorting some Live Life stuff for tomorrow in the middle of it. Dazz has also brought all his retro gaming North with him, which includes an ancient Game Gear with Lemmings on it, which keeps us all entertained for a large part of the evening as the conversations are punctuated with outbursts of swearing at misbehaving creatures hurling themselves to their deaths.

Around midnight, we all decide to call it a night and then spend an hour trying desperately to inflate Dazz’s new air-bed, which has to stand in for the sofa-bed which is due to arrive next week.

Eventually we flop into bed around 1am and near-enough pass out.

I often laugh at the BBC local news when they run Transplant-related stories – they’re so hackneyed and cliché now that you can pretty much use the same voice-over and just change the pictures.

But I had to eat my words this evening when I got this link through to my friend Sally’s report that went out this lunchtime.  It’s hard to think that a little over a year ago I was in exactly the same position – here’s hoping that this time next year Sally’s in exactly my position.

Today was both an emminently enjoyable day and a massively frsutrating one.

A while back, as you’ll no doubt have noticed from the banner on the right of the page here (unless you’re reading this through in the archives in the middle of 2011), I signed myself up to take on this years doitforcharity.com Santa Run through Greenwich park.

At the time – about 7 weeks before the run – I thought that a small, fun 5k could be just the right way to ease myself into the physical challenges I’ve set myself for the next couple of years.  I’ve developed a bit of a master plan that I’m not going to la out on here because I’ll only fall foul of it at some point and feel lousy, but suffice to say that a 5k before Christmas seemed to be a good way of easing myself in.

Then came my port op at the end of last month and truly knocked me back.  Not physically – or at least not in my chest – but the pain in my shoulder and the general disablement it brought caused me to have to stop running.  I figured that even having missed a week’s training I’d still be good for the run, but it appears that my shoulder protests too much.

Any kind of movement of the shoulder, particularly harsh, juddering, running-style movement, has been really painful and – mindful of the fact that I’d have to operate a car all the way home after the event – I had to take the disappointing decision to “drop out” of the run.  I say drop out, but that’s really not true, I just ended up walking it instead of running it.

I was, frankly, really bummed about it the week leading up to it – the whole point of the exercise had been to give myself a physical challenge to round of what’s been an amazing twelve months – but as people kept pointing out to me, it’s a big step forward.  I just wasn’t so sure it was, after all, I’ve done a lot of walking since my op, not least back in October when I not only walked 5k, but did it with a video camera on my shoulder to shoot Nelly’s World’s Biggest Walk.

It was only once I was actually walking around the park, breathing in the freezing cold but deliciously crisp winter morning’s air that I realised what a difference the last year has made.  At this point 12 months ago, I was just learning to wobble around the ward on two very over-sized legs in between bouts of dialysis to keep everything under control and on course for a Christmas release, a date which seemed to be looming without signs of improvement.  To be wandering freely through the park today, holding conversations and pushing Nelly up a really steep hill (until her family came to a perfectly-timed rescue) is a miracle beyond words.

I feel like I spend every post on here at the moment in a moment of thanks to my donor and their family, but if it wasn’t for them I’d never have had the chance to do all of that.  And I’d never have seen my Great Cousin born last night, either – so thank you all, whoever you are.

Haven’t been up to a whole heap today, but got incredibly excited this evening when I got a reply to an enquiry on my cousin’s health introducing Sebastian George Phillips to the world.

(That’s not to say I didn’t know he was due, which is kind of how the above sentence reads back, actually.  In fact, the text was checking on Baby Mama’s state of annoyance/concern/frustration/happiness at being nearly 2 weeks overdue).

7lbs 14oz at just before 9pm this evening I became another Great Cousin.  Obviously I’m already great, but now I’m Great again!

Congrats, guys – many happy years of fun and frolics with the littl’un.