Archives: Chest

I must apologise for the lack of updates. If I’m honest, it’s been a rough time lately and with all kinds of work pressures and the added physical trial of training full-bore for the first time in my life, I’ve honestly been questioning whether or not this was going to happen at all.

I’m delighted to announce, however, that a major pharmaceutical company have agreed to fully-fund the 3 Peaks trip and that we’ll definitely be headed north to Scotland on Friday 3rd June to begin 24 hours of mountain-climbing, mountain descents and driving in between.

I was recently featured in another article online to promote not just the trip but the amazing support the guys at Topnotch Health Clubs have given me, including invaluable training advice and nutrition tips.

Really, though, there’s only one thing that stands out today, with 7 weeks to go. Today in the gym I ran, comfortably, for the first time in my life.

After a 15 minute session walking at speed on an incline on the treadmill, I spent the final two minutes jogging on the flat and for the first time ever – absolutely literally – I didn’t have to stop from feeling out of breath, sore in the legs or with chest pains1.

If nothing else, I’ve proved to myself and my donor that these new lungs are being used for the very best they can. I’ve never been fitter, never felt better and never been able to take so much on my plate as I have at the moment.

I cannot describe how amazing and brilliant this feels. And I cannot express my gratitude to my donor and their family for giving me the chance to feel like this. If you haven’t already, show your support for me, for the trek and for organ donation by signing-up and/or reTweeting/sharing the dedicated sign-up link from NHSBT, http://bit.ly/oli3peaks

1. not heart-attack chest pains, but I used to get a lot of pain across my scar when I tried to run [↩]

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.

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.

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.

So I’ve managed to get myself into trouble with… well… everyone this week, although I personally blame K for it, since it was her status update on Facebook which drove the minor frenzy on Wednesday.

Following my extremely positive annual review at Harefield a couple of weeks ago, Doc C lined me up to have my port-a-cath removed – that’s the small venous access device that sat under the skin on my shoulder and was used to pump my regular IVs into me when I was on them every few weeks, less painful and much less hassle than having longlines and cannulae.

Anyway, Doc C is really happy that I’ve progressed enough now that it can come out, basically saying that I’m not going to need IVs again, that to all intents and purposes, I’m “better”.

To my surprise, having thought it would take at least a month or two to sort out a port date, they phoned me last Thursday and arranged for me to come in on Wednesday and have it taken out by one of their surgeons – and who says the NHS isn’t fast?

So off I toddled, with Dad driving as I wasn’t too keen on ferrying myself back home after having my shoulder sliced open, own to Harefield on Wednesday morning, fully expecting a quick and painless procedure under a local anaethetic and then to be shipped off home.

Upon arrival and talking to the surgeon, however, i became clear that there was a large possibilty of the line causing problems with bleeding etc during the op, so he wanted to knock me out under general anaesthetic so I wouldn’t have to put up with the rather over-dramatic process of fixing things up once he’d cut me open.

Of course, the time before last that I ad a general, I ended up on intensive care – nothing to do with the anaesthetic, mind you – but this set alarm bells ringing for K, who posted an update on Facebook saying she was worried about me and my op.

Having thought it was only a minor, local thing, I hadn’t actually told anyone about going in to have it done, other than my ‘rents and K’s and the people I was supposed to be meeting with that lunchtime.  So, naturally, everyone who read the update panicked and starting sending all sorts of (lovely) concerned messages to K to find out what was going on.

I thought I’d help matters once I was straight-headed again yesterday by posting my own update apologising for not telling people.  Only then it got read by all the people who’d missed K’s status update and so still didn’t know, who then got the same level of worriedness about something that had been and gone and I got plied with even more (lovely) concerned emails and was once again berated for keeping it to myself.

So, for the record – apologies to everyone that I didn’t tell you it was going to happen and apologies to those people who we worried by not explaining ourselves properly.

Also for the record, everything went fine, there was no extra bleeding and my mini-lifeline that’s been in situ for over 13 years slid out nicely under the surgeon’s deft hands and now, presumably, lies in a pile of ash at the bottom of an incinerator.  Weird thought.

My shoulder is still pretty sore – hadn’t really thought that one through ahead of time, but it’s a bit obvious really – but I’ve got good painkillers to deal with it and I’m now able to walk about and generally use the arm, which is a good deal better than yesterday.

I solemnly swear from now on that any and all procedures that I know about in advance will be adequately diarised on here BEFORE they happen so that we don’t freak anyone else out.

Sorry.

Today has been a pretty impressively brilliant day.

It was another Harefield appointment, my first in six weeks after MC told me that it was a bit pointless coming back until they had clear data on whether my CMV had retreated for good or not.  So he had sent me away with instructions to send in bloods every 2 weeks to keep a check on things and that if I hit the 3 month mark with no adverse effects or without showing anything above a zero on my CMV then he’d take me off the Valganciclovir I’ve been on since May and see if my body will cope without it without submitting to CMV again.

Seeing him today with a month-and-a-half of clear results, he was suitable pleased and happy for me to drop my Valgan and continue with everything else, albeit being very much more aware and careful about the first signs of CMV infection, necessitated by the fact that CMV can very rapidly kick-start rejection of the not-very-good kind, which could do my serious damage.

That said, though, he came out with something I wasn’t expecting to hear at all.  Although I may feel like I’ve had a fair number of blips, he thinks I’m doing incredibly well and – going by his experience of CF patients post-transplant – thinks I now stand a better-than-average chance of 5-year survival.

At the time of my transplant, I was quoted statistics saying that 73% of people make it through the first year, and within that 27% that don’t are included people who may die on the table or suffer serious post-operative complications.  Once you stretch the survival period to 5-years, the odds stand at 50/50, but MC now believes that for me the benchmark can be shifted from 50/50 at 5 years to 50/50 to make 10 years.

Another decade of life is better than I think many of us dared to hope.  I said before my transplant if I’m given just six months of a new life I’d be happy.  Time enough to play with my Godsons, experience the things I’d not been able to do for breathlessness and lack of energy, learn to do things on a whim again.  Having slipped past that stage back in May, albeit in the middle of a CMV/EBV attack, I’ve felt contented with my lot, whatever is thrown at me next.  To know now that there’s a very real possibility of a future worth planning for is too incomparable for words.

I’m aware every day that someone, somewhere has lost someone they loved very dearly.  I just hope I can make enough use of the extra time I’ve been given to show them what a truly wonderful gift they have given not just me, but my family, too.

What an awesome day today has been – one of the best since my transplant.

Today I achieved something I’d never have thought I could achieve and done something I never thought I’d see myself doing even before my transplant.

We had my Godson up for the day with his mum and dad at my ‘rents and another family of really close friends with two kids as well and we all traipsed across Willen lake to the high-rope course on the far side of the sports lake.

This thing is pretty epic – a collection of fairly challenging obstacles suspended around 20 feet above the ground on the first level, with an upper level twice that height.  All harnessed and hard-hatted up, we set off around the first level.

The interesting thing about the course is that it’s not really possible to get down once you’ve started, so by way of a tester they put the most intimidating obstacles first, so if you really, really don’t like it, you can turn back.  I must confess, halfway through traversing the 10′ wide section of climbing wall with the world’s tiniest footholds, I seriously considered it.

I’m glad I didn’t though, as the rest of the course was pure joy.  I only struggled at one point, which was a section which required excellent balance (not something I’m renowned for) and good upper-body strength (something which has yet to grace my new body).  With that out of the way, the rest of the course was *relatively* easy.

I was disappointed that the lower level required so much physical exertion that I didn’t have anything left in the tank to attempt the higher, more challenging level this time around, but it gives me a great incentive to build my strength and stamina back up and conquer it next time.

The final step of the course is a 50’ rope drop from a tower in the centre of the courses.  Hooked onto a decelerating wire, you step off a platform for a few moments of free-fall before the rope goes taught and the drum begins to slow you down, depositing you on your feet/butt at the bottom a couple of seconds later at a manageable speed.

Before my op, healthy or not, I wouldn’t not have dreamed of doing something like that in a million years.  To be honest, I’m still not entirely sure what possessed me to to it today, but I did.  I stood at the top, harnessed up and clipped on and wondered out loud what I was doing there before serenely stepping off the platform and dropping to the floor in a matter of seconds.  On the way down it was the most horrible thing I’ve ever done, but as soon as I hit the floor I wanted to go again.

Doing a course like that really rammed home once again the astonishing difference these new lungs have made to my life.  Even after completing it, I still had enough energy to go back to Mum and Dad’s and play in the garden with everyone, as we got through games of Butthead, Scatch and footie.  It’s an amazing feeling to finally be able to run around and play in the garden with people again.

I always said before my op that Transplant is a bit of a gamble – there’s no way of knowing how long it’s going to last for and what your quality of life is going to be like, but I said I’d be happy if all I got was an extra six months and the opportunity to play football with my Godsons again.  This weekend, as I ran and missed yet another perfectly weighted cross just wide of the far post, it occurred to me that I’ve now hit both of those milestones.  Everything I wanted before my transplant, I’ve got – I couldn’t be more blessed and feel more happy and content with my life than I do right now.

Transplant is amazing. Full stop.

Another trip to Harefield yesterday, this time just for a clinic visit. Was all a bit silly, really, since by the time they saw me in clinic they hadn’t had my blood results back, so they didn’t know if they needed to change any of my meds or do anything else, which meant the whole visit was a bit pointless. Apart, I suppose, from the fact that they can at least look at the blood work today to see if anything troubling has come up.

The last couple of days have been pretty busy and I’m feeling it catch up with me today. It’s a very odd feeling, different to my rest-periods from before. I can have a couple of days of being very busy and working flat-out, but then need to take a day off, but it all seems a little unpredictable at the moment. Before my op I had got used to the fact that if I did something, the next day would have to be a rest day. Now, though, sometimes I can get away with doing lots and other times it seems like I need to rest more than usual.

I’m sure this is all part and parcel of the recovery process, coupled with the fact that my body is still working it’s way back to full strength after the virus double-whammy of last month. What still boggles my mind, though, is that even when I’m tired and need a bit of rest, I can still do things. Before the transplant, if I was tired it was an all-encompassing tiredness that wouldn’t let up until I’d slept it off, no matter what time of day or night it was. Now, it’s more of a general slow-down – everything just takes a little longer and I don’t feel as sharp as I was, but I’m by no means bed-ridden.

What’s funny is that I kind of assume that this is the general “normal people” kind of tiredness, but since I’ve never experienced it before, I’ve no idea if it’s a “normal” thing or not – whether I’ll get used to it and stay like this or whether it’s a transplant thing that will change in time.

There are so many things to learn about a new body post-transplant that go way beyond just getting used to having breath in your lungs. I’m getting there, slowly but surely, and learning new things everyday. Even six months on, it’s still a journey of discovery and it’s still as exciting now as it was when I took my first steps back to my room on the ward.

It’s taken me a while to get around to writing about my admission for two weeks almost a month ago, but that’s because I’ve still not really managed to wrap my head around the whole deal.

The two weeks I spent on the ward in Harefield in the middle of May were the hardest two weeks of “inmate” time I’ve spent for a long time and I’m not entirely sure why. Perhaps it was something to do with being on an open ward, something I’ve only experienced once or twice in my life, despite numerous, often lengthy, hospital admissions. Perhaps it was because I was missing out on the holiday with a big group of friends that K and I had been planning for close on 3 months.

Above everything, though, I think I struggled more than I have for a while because something in my brain told me I was passed all this. My new lungs have had an amazing start. A minor hiccup after 2 weeks not withstanding, they’ve gone from strength to strength and my lung function has been steadily rising, my exercise tolerance going with it. I even completed the famed last mile of Tresco with my brother and started entertaining thoughts of doing the whole thing next year.

So I suppose I had kind of taken my eyes off the post-transplant complications ball and started to enjoy life without a second thought for whatever else was going on, assuming everything was tickety-boo. Which is, I suppose, a lesson in itself. While new lungs mean great new things, you can never take their health for granted and even though I’d been booming for the last three months, it doesn’t take much to send the body reeling.

The chest pains I’d been worried about were initially diagnosed as Gastritis, but when I saw the team at Harefield I had managed to spike a good-looking temperature to go with the pain and nausea, leaving them little choice but to admit me. For the first 24-48 hours the cause of my ailments seemed a mystery to the docs, until they got my CMV count back, at which point they were more contented, knowing that they knew how to deal with it now that it had been properly identified.

There’s something disconcerting about being given drugs intravenously which are so toxic the nurses have to wear gloves and the pregnant women aren’t even allowed to touch the packaging. Knowing they can’t go near while you watch it being pumped into your veins is pretty bizarre and something I’ve never got used to, despite a history of high-caliber potions in my time.

When I was moved to the open ward, which happened to coincide with K’s departure on the holiday with our friends (at my insistence, I must add, and under considerable duress) and I dropped into a pretty deep funk. It’s the lowest I’ve been since the darkest days of the early post-transplant period and there didn’t seem to be a whole lot going for me at the time.

I’m slightly ashamed of myself now for letting it all get on top of me so much, since at the end of the day I was still a good deal healthier than I had been not 6 months ago, but for some reason (or, I suppose, a myriad of reasons) I couldn’t raise my spirits at all.

Luckily, at Dad’s suggestion, I managed to secure a weekend release while the guys were all away. The ‘rents agreed to drive me in for my doses of anti-biotics twice a day, but I was free to go home for food, rest and over-night sleep, something I’d been getting very little of on the ward, what with the world’s loudest talker on one side and the telly addict on the other.

Eventually, thank goodness, my consultant, the amazing Doc C returned from his paternity leave in the middle of the next week and on his first round of the day told me I was free to head home as they expected my viral load to be low enough to no longer necessitate the use of the IV drugs, enabling a switch to the more home-friendly orals.

I hadn’t been happier than that afternoon when I got back to the flat just after K returned from the holiday and we could just chill out on the sofa and enjoy each other’s company again after nearly a week apart – pretty much the longest we’ve spent away from each other since we got together.

Getting used to the ups and downs of transplant is clearly taking me longer than I thought it would. My mind appears convinced that things can only go well, so any minor hiccup is a bigger deal than it ought to be because it carries with it something of a heavy shock value. I need to keep reminding myself that it was only 6 months ago that I had new lungs fitted and that I still have a way to go to fully recover, however good I may feel right now.

So I’m trying to take things a little more slowly, although how long that will last we’ll have to wait and see. The main thing for me at the moment is doing what I can to avoid what Doc C affectionately calls the “Superman complex”, whereby people (mostly men) post-transplant start to see themselves as indestructible and slacken off their meds and treatments. It’s hardly the way to say thank you for the greatest gift of all, so I’m determined to stay away from it and keep myself at my best.