Monthly Archives: May 2008

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