Archives: Day-to-day

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

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

This weekend has been manic and really, really tiring, but wonderful at the same time.

I woke up Saturday with the pains in my chest not abating in the slightest.  I’ve still got a stock of Tramadol which I often take for pain in my scar overnight but haven’t used during the daytime for a good few months now.  I’ve been forced back onto them by the pains in my chest again, which is a real drag as it means I can’t drive when I’m on them.

Still, I downed a couple of Tramadol in the morning when we woke up and then stayed in bed for most of the morning while K did kiddie-prep for the arrival of our two nieces in the afternoon.  A while ago we agreed to have them over for the night, Liv being 3, JJ 11, as their ‘rents had plans.  The plans fell through but we figured we’d have them over anyway as we love spending time with them and Liv especially was so excited about it.

I honestly thought we’d have to cancel when I woke in the morning, such was the pain in my chest I knew I wouldn’t be able to do much to occupy them, but K was adamant she could do it herself if the worst came to the worst.

So they rocked up with their mum and little bro around 3pm, then stayed solo later when they headed off home.  The first thing we did was make some little wooden spoon people, which was great fun, although I didn’t actually get a spoon of my own, since there were only 3.  I was relegated to being Liv’s glue-operator, at her beck and call for blobbing when she needed it.

After dinner, we (well, K and the kids) made some cakes, which they threw in the oven to cook while we got the littl’un ready for bed and read her a story.  Once K had rescued the ever-so-slightly over-cooked cakes from the oven, we sat down and played a board game with JJ, before discovering Liv sitting up in bed unable to sleep.

Eventually, after another story and a bit of a grizzle/cry for her mum, we managed to get her off to sleep and we settled into a game of Scrabble with big sis, which was great fun, even though I lost to the always competitive K by 2 points.

It’s funny when I play board games because I’m really not a competitive person – I’m happy enough to play the game, not really bothered if I win or lose.  But if someone else who’s playing is competitive, it somehow turns me into a competitive monster.  I’m happy enough when everyone is chilled and happy playing a game, but if someone is really competitive, I just really, really want to beat them.  I’ve no idea why or where it comes from, but there you go.

Once we were done with Scrabble, JJ headed off to bed only to find little sis had managed to roll herself into a position with her head on one pillow and her feet on the other side of the bed on her sister’s pillow.  Having gently moved her back to her side, the light of her sister coming to bed woke Liv up and we proceeded into a round of very, very tearful calls for mummy.

Eventually, after a call home and a promise that mummy would come get her if she got some sleep (I hate lying to children, but it was a parentally-sanctioned lie, so I felt slightly better about it), Liv settled down and no sooner had she stopped crying than she passed out into slumber again.  Bushed from the day, K and I weren’t long behind, although my night’s sleep was pretty poor since my brain was tuned in to picking up even the slightest peep coming from the bedroom in case the littl’un woke up again.

As it was, we didn’t hear another peep out of either of them until they came into our room at 7.30 the next morning, pretty respectable as mornings go.  We all settled on the sofa bed in our PJs and watched the Incredibles while K, JJ and I slowly brought ourselves to consciousness and Liv ran around jumping all over us like a mini-loony.

Once we’d breakfasted and got dressed, we iced the cakes for their little bro’s birthday party then played a couple of rounds of Tiddlywinks (what an awesome game!) and made a birthday card, at which point it was about time to head home with them.  We took them back and were greeted by an incredibly happy, smiley little brother, who was delighted to have his sisters home to celebrate his 2nd birthday.  I’m not sure he entirely grasped the concept of a birthday, but he was enjoying it all the same.

We hung around for a couple of hours, playing with some of the new toys, reading some books and saying hey to the other family and friends who turned up throughout the start of the afternoon.  Unfortunately we couldn’t stay day because Nana has a bit of a chest infection, which I obviously need to steer clear of, so we had to split the afternoon in half for us to visit early on and Nana to come along after.

Instead, we headed over to my ‘rents to have a great Sunday roast with my mum’s two brothers, one of whom was over from Luxembourg with his wife, and my cousins.  My mum and her siblings are absolutely priceless entertainment value when they all get together and today was no exception.  It was one of the nicest, most raucous, most fun family lunches I’ve had in a really long time.

By the time we got home around 7 in the evening, K and I were shattered.  We have no idea how parents cope with kids 24/7 since we were completely run into the ground after just 24 hours.  We have a new found respect for our brothers and sisters now, since we clearly showed how weak and rubbish we are.  I’m just glad that, unlike K, I don’t have to go to work tomorrow so I can chill out and not worry about anything.

Today’s been the weirdest day, and my first real experience of “illness” for three or four months.  I’ve had no energy at all, I’ve been in bed most of the day and hardly been able to keep my eyes open.  Added to which, I’ve had some really bad pains in my chest which I can’t figure out the source of – they could be muscular or bruising around my scar, but they don’t feel too drastic or lung-related so I’m not too worried.

It’s really odd being unwell again, though, because I’ve not laid in bed for an entire day since before my op.  I don’t like it at all.  Well, the staying in bed part I can handle, but not when it’s enforced because of not feeling well.  I’m sure it’ll all clear up soon, though.

Last night I sat at my computer, whiling away the time until K had finished in the bathroom before heading to bed and I started reading back through my old blogs. I had to moderate a spam message which had attached itself to a posting in mid-December, which lead me right back into the heart of the post-transplant ups-and-downs and I felt a sudden urge to go back to the start and read all through the Transplant from the day of the call.

I’ve read bits and pieces of K’s postings from while I was on the ward and, of course, all of the messages that were left for me while I was going through it. It’s still weird, though, reading back through such thorough descriptions of all the various events which went on, particularly in the first couple of weeks, which are still pretty much a blur to me, although reading the blogs I realise I actually haven’t forgotten as much as I thought I had.

That first month seems a world away from where I sit here, but Sunday marked the 5 month point since I had my op – it’s amazing how quickly the world moves.

Today has been K’s day – she finally finished her college course, which I rather unhelpfully got in the way of before Christmas – handing in her dissertation and doing a presentation to her main tutor. He has told her that she’s already passed with the highest grade possible (Level 3) without even having handed her dissertation in and that her presentation was the best and most professional he’s ever received for a student.

Now, we all know that K is wonderful, amazing, intelligent and a whole load of other incredibly positive adjectives as well, but it often passes her by completely. Having someone who actually matters (as opposed to… you know… me) tell it to her, and to have a piece of paper telling her it’s true, seems to have made the world of difference as for at least a few hours today, she actually believed it herself.

After picking her up from her presentation, all bouncing, bubbly and beautiful, we headed to the flicks to catch Flashbacks of a Fool, the new Daniel Craig film. No one can say that since being passed the mantel of Bond that Craig’s left himself open to type-casting. He’s working incredibly hard to make sure that all the time he’s contracted as Bond, he’s not letting his career slide, turning in some great performances in smaller, more independent fair like this. And he is excellent in it, let me assure you. There’s a scene towards the end of the film where he confronts/approaches/meets Claire Forlani’s character (something of a blast from his past) in a graveyard and his eyes are simply mesmerizing.

The film itself is a cleverly-structured deconstruction of the life of a Hollywood mega-star for whom bad news forces him to remember a time he’s spent a lifetime trying to escape from. What could be scene as a somewhat hokey narrative device become an interesting and plausible plot device by being plastered across the film’s title. Knowing you’re going to be dealing with flashbacks restrains you from dismissing them as is so common in modern movie-making. What’s more, they’re actually accomplished in a much more deft and sensible manner than many films who aren’t so up-front about their usage.

The cast is uniformly excellent, with a couple of exceptions who don’t really need mentioning as the don’t really spoil the film. The flashback sequence is perhaps a little on the slow side, perhaps a touch too long, but it’s impact is undeniable and the Daniel Craig bookends so riveting and absorbing you forgive the sluggishness of the middle portion.

It’s undoubtedly one to check out, although it’s not the most happy, uplifting film in the world. Precise and carefully, considerately put together, but heart-warming it is not. Check it out, if you don’t mind taking a tissue or two.

Today K and I popped along to a friend of ours’ renaming ceremony (like a wedding but not, it’s a long story).  I walked in the door to be greeted by a phalanx of lovely ladies with whom I used to enjoy nights out after work at the Theatre and, for that matter, enjoyed messing around with (not like that!) at work in the Theatre.  The troubling thing about all these ladies I knew so well but haven’t seen for ages is that every single one of them were holding babies.  And not just littl’uns they’d borrowed for the say: actual, honest-to-God offspring of the person holding them.

I know I’m not the oldest man on the planet (although I’m a lively age if you combine me and my donor’s ages), but it didn’t half feel weird to see so many friends with kids.  Not content with missing out on new boyfriends, weddings, promotions at work and all that gubbins over the last couple of years since I left work after becoming too ill, it seems I’ve also managed to miss the birth of a whole new generation of bairns who will no doubt one day rule the Theatre and the City.

If most of the guest weren’t running around changing, feeding and chasing sprogs, they were doing their best to look after those whose arrivals were imminent.  I’ve never seen such a collection of virility in one place at one time.  The invitation said “bring a bottle” but I didn’t think it meant it that way.

Still, baby scares aside, it was an awesome afternoon.  I’ve missed out on so many of Lea’s major events in her life over the last couple of years – her engagement, the birth of her daughter, her daughter’s Christening – all because I was too ill to contemplate an afternoon out of the house or I was couped up in hospital, so it was amazing to be part of this one.  It was another solid reminder of the way my life has changed in the last five months.

It was funny seeing all my old workmates again, too, as most of them haven’t seen me post-transplant, so it was great to see so many people’s reactions.  Many of them had followed K’s blogs through the ups and downs and were chuffed to finally see me, which is always a nice feeling.

In the evening we shot over to the ‘rents to catch up with my Gramps over dinner.  He’s been a bit down after he had to cancel a holiday to Devon because he had another DVT, but he seems to have rallied pretty well, which was good to see.  He’s still an amazing man for a 92-year-old and is still capable of things that a lot of 70-year-olds would struggle with, but after a few DVTs he’s been warned off plane travel, which means no more of his over-seas holidays exploring jungles and safari-ing.  It’s really sad for him and I know exactly how he feels after 3 years of not being able to leave the country.  I’m the lucky one in that I can now enjoy my freedom, whilst his is being curtailed, but he seems happy enough for now, which is encouraging.  Either that or he’s being all stiff-upper-lip about it, which is perfectly possible, too.

In an effort to keep up as much rest as I can this week after Tresco, we didn’t hang about too late and got back home and in bed by 10.30, which I have to admit was pretty nice.