Yearly Archives: 2008

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.

Under pressure from outside sources (no names, Lisa), I have forced myself to my desk to write an update.  I had – honestly – been intending an update for a while, including some back-dated film reviews (it’s been a busy week on the film front) but just haven’t seemed to find the time to do it.

My energy is still coming in fits and starts.  After a busy and productive week last week, this week has been a little more relaxed and less work-focused.  The new issue of CF Talk is taking shape, but is now at a stage where I’m waiting for our writers to draft their articles and send them in, leaving me without a great deal to do other than sit and wait.

Live Life Then Give Life is going from strength to strength since our charity registration came through and there are a number of projects being mooted between us as I speak, sadly none of which I’m at liberty to disclose just now.  If you live in the Manchester area, though, what this space over the next couple of weeks because we may have something exciting to announce.

I have also got myself back on the writing wagon, having taken my Headliners screenplay up to 40 pages and still going, which had really excited me as I whenever a hospital is around and about I seem to lose a great chunk of my creativity and imagination.

In fairness, I suppose it’s not the hospital so much as the condition I’m in.  After all, if a hospital stay is called for it means I’m not doing well and if I’m not feeling well then, as has always been the case, my creativity and artistic expression is the first thing to go.

Next week I’m due to give a speech at the Ipswich Press Ball about CF, which I’m really looking forward to – black tie events always excite me, mostly because the old performer in me loves getting dressed up and being the centre of attention.  Unusually for me, I have actually written my speech this time.  It’s not long, only a couple of minutes, which I would normally busk my way through relying on my natural charm, wisdom and eloquence, but clearly my faith in myself has deserted me.

Actually, quite apart from this being a posher and more official deal to the kind of speech I’ve made in the past, I also had some strong ideas for the speech that I didn’t want to lose in the weeks building up to the speech.  In the process of getting my ideas down on paper I got carried away and ended up writing the whole thing.  After the ball, I’ll pop the text up on here for you all to peruse and tell me where I went wrong.

Other than that, not much has been happening, really.  Although looking back over what I’ve just written I realise I started by saying I’ve not been doing much but have now clearly proved I’ve actually been quite busy.

Next week is hopefully dedicated to CF Talk and preparing articles for submission to the designers, with a short break away in Ipswich at my Godfather’s place for a couple of days of proper chillage before the Ball.

Promise I’ll have more updates on the boring things soon, and won’t leave it so long.  Mind you, how often have I said that…?

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.

Sorry for the delay in postage, but I’ve been rather enjoying my timely escape from the inner sanctum of Harefield for a fab 3-day birthday.

Saturday was spent mostly with K’s parents, who took us out for the day around a couple of nice local spots, including a great little farm shop near where they live, which has all kinds of great home-made farm-type stuff, plus a load of great, fresh produce of the sort I’m not allowed to eat any more, which made me very jealous of all the people picking up fresh black pudding and some tasty looking soft/blue cheeses.  That said, I did have a very tasty bowl of soup with crusty French bread for lunch, which went down well.

A light lunch was all important as the evening was spent with my parents, my brother and my bro’s best mate and his girlfriend (who I’ve not seen for ages) at The Birch, a really nice restaurant just outside of MK.  It does the most amazing selection of fresh, seasonal vegetables and prime cuts of meat, alongside a full menu of great seasonal dishes.  I’m not a big fish eater, but I had the most delicious fillet of sea bass, one of my faves, which was cooked to perfection.

Sunday, my actual birthday, started slowly after the late night the night before, but I was soon up and about, opening the myriad cards K had laid out for me all nicely, then chilling out a little with S&S who came over to say hey and show off their engagement ring, which had been presented whilst they were away on holiday in the lakes (the less said about which the better, seeing as everyone had a great time while I was locked away).  It’s very cool for both of them, though, as they are clearly deliriously happy, despite having come to the dawning realisation that weddings actually cost money.

Around lunchtime we headed over to the ‘rents again to grab a BBQ with my Aunt and a selection of her troupe – some of whom had better things to do and others of whom tried using the excuse of being in Africa at the time, which I felt a little lame.  Of course, being post-op, BBQ is now off the menu for me, but I still had the same grub in the same delicious flavours, only it meant a little more work for Mum, having to bake mine instead of passing them off to Dad for the barbie, as is the usual Lewington bat-plan for weekends.

You truly find out who your friends are when you’re forced out into the rain to cook people a nice barbie (and my dad is an awesome BBQ chef).  Not a pleasant thought for Dad, who spent the entire time outside on his lonesome cooking up a storm, which everyone else seemed only too happy to eat.

Still, he didn’t seem to object too much and we had a great get-together.  For me, celebrations like these are all about the family – getting together, catching up, laughing, enjoying each others’ company.  I’m very blessed in having such a close-knit family who actually enjoy spending time with each other.  All too often I hear people moaning or complaining about having to spend time with people in their family “because they ought to”, but in our family we spend time together because we want to.

It’s also great to know that the other family I’m being assimilated into feel the same way – their just as close as us, even if the age-range is slightly more strung-out, but they enjoy seeing each other and spending time together.

I love the fact that my family relationships are more like friendships, things you actively keep going and people you want to keep in touch with, rather than a familial devotion to keeping abreast of what’s going on and meeting up only for the enforced holidays of Christmas and such.  It’s nice to be part of something where we get so much joy from each other in such simple things.

Sunday night, K and I got back home and just chilled on the sofa with a movie, before Dazz turned up completely unannounced from Leeds to surprise me.  It’s an unbelievably awesome gesture for someone to travel this far to see me just for my b’day when petrol costs what it does and he’s still to find a job up there (well, still to look for a job up their…).  It was great to see him and, although it rather spoiled my plans for an early night, we had a great evening sitting chatting and playing Buzz.

In the morning, after rolling out of bed a little later than planned, K and I hit Borders to find a way of spending the vouchers I’d been given.  I picked up an awesome Indiana Jones book, but struck out on DVDs as all the ones I usually want to pick up when I’ve got some cash weren’t around and all the cheap ones in the sale were either already in my collection or just plain rubbish (or both).

After we’d mooched about for a while in the heavenly B, we headed off to the pub we affectionately know as Old Spoons and settled in for a drink or two, being joined at stages by S&S, Cliff, Dazz and his fam.  It passed a couple of pleasant hours before we had to excuse ourselves to the awesomely exciting task of hitting Tesco, which we did at speed, before returning to the flat, collapsing on the sofa, grabbing some dinner and catching a movie.

Three day birthdays rock so much more than regular, plain old boring single days.  It’s the advantage of being born at the end of May when you nearly always wind up celebrating on a Bank Holiday weekend. Hooray for May birthdays.

I’ll be back later in the week with a summary of my incarceration and let you know how I’m getting on.

It’s Oli, back again after my enforced 2 week absence.

This is only going to be a quick one, though, to shout out loud to everyone that I FINALLY ESCAPED.  I don’t know why, but the last two weeks have been two of the hardest I’ve experienced in quite a while.  I know the immediate post-op period was harder, but other than that, this has been the toughest hospital stay I’ve had in a long while.

I’ll try to write a fuller update and coverage of the last couple of weeks sometime tomorrow, but for now I just wanted to thank you all for your lovely comments, emails and text messages and to let you know that I’m very thankfully out in time to enjoy this weekend properly, feeling much better if a little tired from the lack of sleep in the Big House.

Hope everyone’s well, more updates soon.  And thanks to K for her updates again!

Sorry for the lack of updates, the past few days have been a blur of busy activity for me.  Before Oli decided to go and catch himself a few bugs we hit upon an idea of throwing a baby shower for a good friend of ours who is due to give birth while we are on holiday.  That baby shower was on Sunday and so prep had to be fitted around any time I wasn’t at hospital (generally late at night), and, as there was no major change I took the decision that the blog could wait a couple of days.  Big apologies to anyone who was getting worried.

Today I spent the whole day with Oli.  The morning lifted our spirits a little when the doc mentioned that CMV levels had dropped right down and CRP levels were also lower.  The afternoon sunk our spirits again when the doc said that as well as CMV, Oli has tested positive for EBV (Epstein-Barr Virus) and could potentially be in for longer than we had thought.  Good news is that EBV and CMV have the same treatment so the result that has just come back from last weeks bloods testing positive could easily have changed already as he has now been on the toxic IVs for almost a week.  Bad news is that testing blood for EBV is a lot more complicated than routine blood testing and takes a few days before the results come in – it would be this delay that could hold Oli up in hospital.  The length of Oli’s stay is entirely dependent on how the EBV numbers go and that’s not such an easy thing to predict, if he needs more IVs then he’ll have to stay on longer.  If the figures are coming down then maybe he can go onto oral antibiotics and come home.

As far as holiday goes, for Oli, he won’t be able to come on this one – needless to say we are pretty hugely gutted.  I, on the other hand, will still go but may come back early depending on the blood results and the following treatment course.

The main thing we’re hoping for now is that Oli can be out of hospital for his birthday on 25th May, fingers are very much crossed at this point.

Thanks again for your wonderful messages, Oli receives every one and really appreciates them, keep ’em coming!

After being admitted on Wednesday afternoon the docs have done a lot of tests as they had few ideas as to what was making Oli iffy.  Thursday night the results came in (I wish my area of the NHS had such a prompt service) and he has CMV or Cytomegalovirus infection.

This is part of a herpes virus, like cold sores, which for many of us can lay dormant and not produce any symptoms or problems.  Oli, however, has very little immune system.  Coupled with this it is actually a case when the ‘potential’ virus came with the lungs (you can read the technical bit here, http://www.touchbriefings.com/pdf/2006/Czebe.pdf,  if you so wish).

In cases where a donor is CMV+ and the recipient is CMV- doctors place the recipient on a large dose of antibiotics for 100 days and that generally prevents CMV ever being a problem.  As per usual, for Oli, this 100 days of big antibiotic hasn’t been enough to suppress the virus and it has reared it’s head to let us know.  Oli presented with almost all the symptoms (tiredness, high temperature, loss of appetite, nausea and vomiting, night sweats, muscle aches,joint pain and stiffness, and weakness).  If CMV goes untreated or mistreated it can have pretty severe consequences.

Fortunately for Oli the team at Harefield are unbelievably amazing and are onto it and seem to be nipping it in the bud already, once again for technical people out there – yesterday Oli had a CRP of 160 and today it has dropped to below 100, it’s going in the right direction.

Unfortunately for Oli because of the potential seriousness of the virus he is having some superhuman antibiotics which will mean he will be in hospital for somewhere in between 1-2 weeks.  We are supposed to be going on our first proper holiday next Friday with lots of friends and at the moment this is in jeopardy for at least Oli and maybe me.  Wee bit gutted but at the same time we realise the importance of these drugs and know that it is in his own interests that he does whatever the docs tell him he must do.

In spite of all this Oli is actually in pretty good spirits, I think it’s fairly comforting to have a rough time span in mind.  Time spent in hospital is much better handled when there is a clear light at the end of the tunnel.

Thank you from both of us for all your wonderful messages, we both really appreciate them and has made us feel very loved so thank you hugely.

Enjoy your weekend, hope the sun shines for you x

Hi, this is K, Oli’s parents have gone away to Luxembourg for a week so to coincide nicely with that Oli has landed himself back in hospital.  He did the same thing in January when they went to Rome.  If I were them, I’d be a little concerned about booking any more holidays!

Oli has gone in today because his stomach/chest pains haven’t really gone away, they kept him there because he decided to spike a temperature as well, I think I’ve said before that if Oli is going to do something he’ll do it well.  It shouldn’t be a long stay for him, the main aim is to get him re-hydrated (he hasn’t eaten or drunk anything for a few days due to pain), get his temperature down and they’re giving him some anti-biotics as a purely precautionary measure.  Blood cultures should come back in the next day or two and they’ll tell if he’s growing anything but the general opinion is that sleep and fluids should make Oli a happy boy again.

In other littler news, a few of you might like to know that I got accepted to City University yesterday to start a Speech Therapy degree in September, I am ridiculously ecstatic and thought you might like some happy news to temper the hospital news.

I’ll fill in with updates once results have come back from blood tests, etc.

I’ve been pretty lax at blogging this week, mostly because I’ve not been feeling too great.  The chest pains aren’t going away and the doc’s can’t put their fingers on what it is, other than to say it’s nothing too much to worry about, which is a encouraging.

I was going to blog about how tough the week’s been and how I’m now pretty rubbish at being ill, so out of practice have I become.  But yesterday something changed all that and put my week into perspective.

A month or so back I delivered to a friend of mine a portable oxygen concentrator which I’d kindly had donated to me by Emily after she had her transplant.  It’s something of a lucky concentrator (called Travelair Claire, christened by Em), which has seen 3 previous owners receiving new lungs and passing it on to a friend who needs it more than them post-op.

Luck, though, runs out, with no more brutal demonstration than last night, when I learned that my friend, Sam, known to most of the CF community as Princess Sam, had died yesterday afternoon.

Sam, like me before and like many still, was waiting for a lung transplant that never came.  When I found out I felt completely numb.  How does the world decided who gets what?  Why have I been lucky enough to be given a second chance at life when someone just as deserving doesn’t.  What makes me so special that I get to try again, whilst Sam had just 22 years on this earth to fit in all she could?

Every year nearly 500 people just like Sam die whilst waiting for a transplant that would save and transform their lives.  I’m at a total loss to understand why I managed to avoid being part of those statistics and why I’m now living a life and doing all the things I’ve wanted to do and why Sam’s family now have to face the loss of another daughter.

Life is so unbelievably unfair sometimes and I wish I knew why things like this happen, but I don’t and I know that I never will.  For now all that matters is that we continue to do all that we can to increase awareness of organ donation, get people to sign up and help to prevent these wonderful people being lost.  And, what’s more, to live my life in a way that befits someone being given a second chance – to make the most of every opportunity, to give thanks every day and to hope that somewhere those we’ve lost are smiling down on us and wishing us well.

Breath easy now, Sam, you’re one in a million. x