Smile Through It II: The Next Chapter

Chasing dreams, because I can

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Archive for the ‘Hospital’ Category

11th Hour, 59th Minute

Posted by Oli on Tuesday 29th December, 2009

On Sunday night I went to bed with my phone on and next to my pillow. I was fully expecting a midnight text to tell me that our wonderful fighter Jess had finally lost her battle after dragging herself through one last Christmas.

In the middle of the night – just after midnight, in fact – the phone did indeed buzz. I fumbled around, picked it up and read the message.

“Jess is having her transplant NOW”

I came on here this morning to leave a message about everything that’s happened with Jess in the last few days, but in fact my friend Sarah has beaten me to it and written such a concise and accurate blog detailing the events, emotions and thanks that we have all felt over the last few days that instead of trying to rehash it badly, I’m just going to send you over there to read about it. It’s also worth taking a look at the previous post as well, detailing as it does a family’s first Christmas together thanks to the wonder of organ donation.

Spare a thought as you read this for the family who have suffered the worst of Christmases and keep Jess in your thoughts and prayers. Although she’s finally been given her gift, she’s got a long road ahead of her and there are no guarantees. But one thing we all know is that she wouldn’t be with us now were it not for her call finally coming after more than four years of waiting.

Posted in Day-to-day, Difficulties, Friends, Hospital, Transplant | Leave a Comment »

Christmas & all that it brings

Posted by Oli on Monday 21st December, 2009

I’ve been struck again by one of my intermittent bouts of insomnia and have – as usual on nights like this – found myself sitting and contemplating all around me.

In particular, I’ve been reading back over this blog entry from the summer and going back through the last few months on my Facebook. I wanted to break into the “real world” and do something that felt like a tribute to my donor. I know now that the decision to go to Liverpool was made in haste and a fog of ambition and clouded judgement.

I can’t regret that decision, though, as it’s left me in a place now that’s so much happier than I was before I left. Being away has made me realise what it is I want to do, but more than that it’s shown me that I have the knowledge, drive and courage to pursue it.

I’m immensely lucky to be surrounded my my wonderful family, my always-supportive friends and, of course, my wonderful K. Since getting back from Liverpool I’ve been happier in my life, my house and my skin that I can remember for a long time.

At the same time, thinking about the future has made me think about all those around the world less lucky than me. I lost my friend Jo just a few short weeks ago and said my final goodbyes last week and knowing that her family face Christmas without her is heart-wrenching. Added to which I’ve got one friend in hospital over Christmas, another friend’s baby brother in intensive care and two more friends facing the very real possibility that this will be their last Christmas if their transplant doesn’t come in time.

This time last year, my brother was fighting in Afghanistan in one of the longest and most protracted operations of our combat there. On Christmas Eve, in an experience I’ve never had before, I was overcome by emotion during the midnight service thinking about him and the dangers he was facing. Without realising, and something I can only attribute to the kind of sibling bond I’ve always derided, I woke on Christmas morning to a phone call from my parents to say that he’d lost one of his closest friends right by his side that night.

In truth, despite our hardships, my family is undoubtedly one of the luckiest and most blessed in the world. I’ve fought and won battles within my own body and been lucky enough to be given a second chance at life. My mum has battled her own illnesses and come through with flying colours and my bro has fought and survived one of what is turning out to be the bloodiest wars in decades for the British Armed Forces.

I’ve been blessed by so much happiness in my life and as Christmas approaches with people living in fear, in hope and in grief, I realise more than ever that now I know where I’m going, it’s time to put the pedal to the metal and get my arse there.

I can’t wait to get started. Here’s hoping that the New Year brings all of us the things we want most in life and, should it fail to and instead present us with more, deeper challenges, may we all have the strength to fight, battle and rail against them and emerge victorious this time next year.

As a wise man once prayed: “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

Merry Christmas to you all, and a Happy, Healthy, New Year.

Posted in Day-to-day, Difficulties, Family, Friends, Hospital, Improvement, Projects, Support, Transplant, Uni | 2 Comments »

Please help save Jess

Posted by Oli on Sunday 20th September, 2009

I don’t much like blogging from my phone – it’s a bit tiny to write lengthy missives on (given my propensity for verbosity), but right now I don’t want to wait another day until I can access a computer.

A very good friend of mine and amazing fundraiser and supporter of LLTGL is very, very seriously ill. Like I was, she is waiting for a double lung transplant and has held on despite terrible health for a remarkable 4 years on the waiting list. When you consider that you’re only supposed to be listed when you have a life expectancy of less than 2 years, that shows you how amazingly she’s doing.

Sadly, things aren’t looking great. She was rushed into hospital at the end of the week struggling to breathe and is now reliant on her non-invasive ventilator to keep breathing. Her lungs are quite literally unable to cope with the demands placed on them by constant infection and the ravages of CF that she fights daily.

All of her friends are trying to do everything we can to help, but there’s so little we can do.

One thing at our disposal is the power of words and friendship. As Jess’s friends we are all talking to all of our friends to encourage people to sign the organ donor register and to tell everyone they can to do the same.

If you’re on Twitter, post the above link along with #savejess or tweet about her @Jess_19 and tell people about her.

If you’re on Myspace, Bebo or Facebook, put Jess and the link in your status updates, even link to this page to show people what you’re shouting about.

So much of Jess’s fate now rests with the doctors and medical teams looking after her and her ability to keep fighting. But it also rests on the courageous decision of one single person to give her life after theirs has passed.

Please, please, please do whatever you can to help give Jess the same chance of a better life that I’ve had and am currently making so much of.

Thank you.

Posted in Charity, Day-to-day, Difficulties, Friends, Hospital, Support, Transplant | 1 Comment »

The Hawaiian Rollercoaster

Posted by Oli on Monday 31st August, 2009

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.

Posted in Chest, Day-to-day, Difficulties, Drugs, Family, Hospital, Improvement, Shopping, Transplant, Travel, Uni | 8 Comments »

House

Posted by Oli on Saturday 29th August, 2009

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.

Posted in Annoyances, Chest, Day-to-day, Difficulties, Drugs, Family, Hospital, Transplant, Travel | 8 Comments »