Archives: Difficulties

By now you’ll have read the other two posts and, possibly, seen my Tweets on the subject, too, but I’m home safe and sound after the craziness of the preceding weeks. Here’s what happened on the final day of investigations at the John Radcliffe in Oxford.

At 8.30am I was informed I’d be going to the angio theatre at around 11am to get everything sorted. 10 minutes later I was told it would be 9am instead. A rapid shower and gowning later, and I was riding my bed down the corridors to the radiology department, where I was met by an assortment of nurses, doctors and, I think, and anaesthetist (although she could have been just about anything).

The nurse checked out my groin and deemed that I’d not shaved well enough, so gave me a rapid going over with a dry razor, following which I was immediately sterilised with surgical alcohol. Yes, yes it did hurt. A lot.

Next came the ironically-painful local anaesthetic injections around the artery in my groin, followed by a frankly disconcertingly painful and uncomfortable pull, pushing, pressing and scratching as the doc inserted a fairly large tube into my artery and begin sliding the angio tube all the way in and up to the base of my neck.

Angiograms are very weird things, where you’re lying flat on your back with an X-Ray machine immediately above your face and one immediately to the side. As they inject the contract dye into you head to highlight the blood flow – and thus show any clots or aneurysms – you feel a hot rush that’s unlike anything you can describe beyond the feeling you get when you tense really hard to make yourself go red in the face.

What’s even weirder with a full angio, as opposed to the CT Angio I spoke about last time, is that they pinpoint very specific areas of your head, meaning you get the flushing sensation in extremely localised areas in your head. It’s incredibly bizarre and although not unpleasant, it’s not something I’d like to repeat to often. Or at all.

Back on the ward, I felt the familiar headache forming, but this time it was accompanied by a significant nausea as well and before long I was beside myself with pain and the urgent desire to throw up, coupled with being forced to lie flat on my back for 6 hours after the procedure to prevent the artery opening up again once it had clotted.

It turns out, although I was unaware of it at the time, mostly through sedative doses of Codeine and Tramadol for the pain, that I’d reacted to the dye they had used. Whereas the CTA had only cuased a headache, the far more significant doses of dye used in the full angio had resulted in a not-insignificant reaction on my part. The only good thing to come from it is that I don’t really remember a lot of it too clearly.

In the end, I improved quite rapidly once I was put on IV fluids and began to eat and drink again and I was discharged the following day with two conflicted reports on what had happened.

The registrar was of the belief that the whole thing had been caused by acute sinusitis and that the LP result had been a false-positive. This is a diagnosis I struggle with having seen my mum suffer through horrendous sinusitis in the past and not recognising a single symptom she described in myself. However, because it was the only thing that showed up on the CT1, I think the Reg decided to put it down to the visible.

The consultant, on the other hand, strongly believes that it had, indeed, been a sub-arachnoid haemorrhage, caused not by a ruptured aneurysm as is most common, but by a burst blood vessel that was so small it obliterated itself in the process, leaving no evidence whatsoever for the scans to pick up – something that happens in around 15% of SAH cases, she told me.  Her main evidence for this was based on the Xanthochromia found in the LP – a type of cell formed when red blood cells expire – which she doesn’t believe would have formed in the CSF through a badly-performed LP as it takes too long for the RBCs to break down to that stage.

So, essentially, I left the hospital with a clean bill of health, but feeling worse than when I did when I was transferred.  I’m now on an anti-convulsant drug to stop the blood vessels in my head spasming and causing more problems. I’m assured this is purely a precaution and the course only lasts 3 weeks, so I should be back to normal soon.

More on the changes that have been forced on my by this latest hospitalisation later in the week.

1. ie, that my sinuses were full of muck [↩]

Following my post from last Thursday about my admission to hospital, at the end of which, you will remember, I was waiting for a transfer to a neuro unit somewhere in the UK, the epic story of a simple headache continued for the next 6 days before finally reaching an inconclusive conclusion on my 29th birthday this last Wednesday.

I was (eventually) moved to the John Radcliffe Hospital in Oxford, where their neuro unit is considered to be one of the best in the country. On top of which, it was significantly easier for my family to come across and visit than a stay in central London would have been.

The Saturday after I arrived I was prepped and sent for a CT Angiogram, which is a regular CT scan1 plus a big bolus push of iodine-based contrast-dye to highlight all of the blood vessels. The idea was to look for aneurysms or weakenings in the walls of the blood vessels that usually show as small bubbles of blood. The concern with any aneurysm is that it could rupture and cause major bleeding on the brain, which in turn can cause strokes or even death.

The didn’t find anything.

It was at this point that the suspected diagnosis was made clearer to me through the far more knowledgeable nursing and medical staff at the JR; they suspected what’s called a sub-arachnoid haemorrhage. Here’s a couple of quick definitions to save me boring you to death if you couldn’t care less about the rest of the medical jargon and info.

I then spent the rest of the weekend locked up on the ward on 4-hourly obs and not allowed to stray for more than 30 minutes and then only if accompanied by a family member. Strict isn’t the word, but then I suppose the kind of issues they deal with are much more serious than most of the hospital wards I have frequented in the past, where a minor hiccup is unlikely to lead to instant chronic brain failure or death.

On Sunday afternoon, I was told by the weekend doctor that he suspected the LP from Harefield had been a false positive from the two failed attempts before the successful one2 and that further tests were unlikely to be ordered.

To my surprise, then, I was consented for a cerebral angiogram first thing on Monday morning, with no real explanation of the reasons beyond the fact that it’s the best test to check or aneurysms. Clearly, the weekend doc wasn’t the one in charge of my case and made a slightly sweeping statement in leading me to believe all was well and I’d be on my way home as soon as the docs on my case could process the discharge paperwork.

Waiting around, nil-by-mouth, all day for a procedure you don’t know a huge amount about is slightly frustrating, but not nearly so much as being told ten minutes after lunch has been round that they won’t be performing it that day.

I would go on to have the full angio the following morning, but that’s a whole story in itself.

The epic adventure continues tomorrow….

1. of the kind I’d had to Harefield the day I was first admitted [↩]
2. meaning the sample was contaminated by blood from outside the CSF [↩]

If you’re reading this, you probably already know that I’m currently residing in Harefield Hospital following a ruptured cerebral aneurism on Sunday. Here’s the lowdown:

Sunday night, around 8pm, just as I was returning from my dinner break to put the final touches to the project that was due in on Monday, I developed a sudden, severe headache at the top of my neck where the spine meets my skull. Within minutes, it had spread right around my head, which alternated between feeling like someone was drilling into it and my brain trying to explode out of it.

By 8.30 I couldn’t function and was laid on the bed in pain, feeling sick. By 9.30 I’d started vomiting and wouldn’t stop for the next 24 hours.

After failing to keep down one dose of immunosuppression and knowing the morning dose wouldn’t stay down, either, I headed in to Harefield where they rapidly took a CT of my head and found nothing.  To be on the safe side, they then opted for a lumbar puncture (or spinal tap) to see if I had signs of blood in my cerebro-spinal fluid1.

Although clear to the naked eye, tests that returned on Tuesday confirmed the presence of blood and, hence, a probably bleed on the brain.

Since Tuesday, I have been improving progressively and now feel right as rain and ready for action. The doctors, however, disagree.

It’s extremely unusual to have any kind of bleed like this at my age2 and the obvious concern is that a small aneurism (pocket of blood) had a small bleed that caused the initial headache, but could fully rupture at any time and cause more life-threatening consequences.

Personally, I’m not worried about that at all. Harefield have been trying for the last 3 days to get me transferred to a specialist neuro unit with little success, which indicates to me that none of the neurosurgeons who have looked at my file are overly concerned.

That said, it’s obviously far too big a gamble to ignore it all together, so my current state of limbo is being sat in Harefield whiling away the hours and days until a bed becomes available for me at either Charing Cross or, more likely, the John Radcliffe Hospital in Oxford3.

Without going into more medical and boring detail, that’s pretty much the skinny for now. No idea if/when I’ll have access to my laptop again when I’m moved, so there may not be updates as regularly as you may like, but the latest news will be posted on my Twitter feed as it comes in.

Finally, many thanks for all the love and support you’ve all shown over the last couple of days since we first made the news public, it means a lot to me and to K as well, who’s obviously had quite the time of it over the last week and is coping with her typical strength and humour.

1. NB – blood in the CSF is NOT a good thing [↩]
2. a tender 28 until next Wednesday [↩]
3. also my preferred choice [↩]

In precisely 3 weeks’ time the 3 Peaks team will be aboard out transport and heading north to Scotland where we will begin our odyssey in the early hours of Saturday morning, aiming to reach our conclusion at the foot of Snowdon1 24 hours later.

At times I’ve really struggled with this challenge. Sometimes physically, sometimes mentally, all based on my perception of the views and abilities of others: is it really that tough if thousands of people do it each year?

Here are a few lessons I’ve learned about myself along the way:

1. I have more will-power than I’ve ever thought – apart from anything else, it’s the first time in my life I’ve managed to push myself to go to the gym even on the mornings I’ve really wanted to stay curled up.
2. I have a far higher pain threshold than I thought – each session in the gym I push harder and harder and when it hurts… I keep going. That’s not a phrase I’d have associated with myself before.
3. It wouldn’t work without inspiration – beasting myself on a bike or treadmill (or worse now, the Stairmaster) is only possible by holding the image in my head of all those people I’ve lost and all those I’m afraid of losing. Keeping their plight in mind helps me go harder than ever.
4. Transplant is a truly remarkable thing.
5. I am truly blessed to be able to enjoy all that I do and can do.
6. I will never let this new life go to waste.

Am I confident we’ll get round the 3 Peaks? Sure. Do I know that I’m fit enough to make it? Not really. I’m fitter than I’ve ever been, but I don’t know how that compares to the level of fitness that’s needed to scale Britain’s 3 highest mountains in 24 hours.

All I really know is that I’m going to push myself harder than I’ve ever pushed, drive myself further than I’ve ever been and, most likely, sink myself to new depths of exercise-related pain that ever before.  But you know what? I’m the luckiest guy in the world to be able to do this now and however hard it is, I’ve been through worse.

1. having been up and down it, obviously [↩]

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 [↩]

The most common question I get when talking about the 3 Peaks is “Why?”.

I have two answers, both of which are exemplified in things I saw on Twitter today.  Number one (courtesy of the marvellous Sheri Candler):

Number two is this series of Tweets from a very close friend:

Just had call number 5 but no good for me. Gutted.

@Tor87

Feeling awful but thank you for keeping my spirits up, so many lovely friends. Please remember the amazing donor and their family today. x

@Tor87

God this has hit me hard. In lots of pain, breathing awful, body wont work. You cannot imagine.

@Tor87

Not only has Tor had to suffer yet another false alarm, but even while she’s hurting, struggling to breathe and exhausted from over 5 hours of travelling, she’s thinking of others.

And when she says, “You cannot imagine,” she absolutely means it. If you haven’t been there, you cannot possibly understand the rollercoaster of emotions that is involved with a false-alarm; being prepared to have your life changed forever before being told it’s not going to happen. And knowing that if it doesn’t happen today, it may never happen at all.

You want to know why I’m subjecting myself to 24 hours of mountain climbing following 3 months of hard training?

Tor is why.

Sadly, despite being up ’til past 2am two nights in a row, my body1 just isn’t in the mood for sleeping.

I’m an impatient slumberer and if I’m not asleep within about 30 minutes of turning the light out, it just makes me more restless. So, around 3am I get myself up again and head downstairs.

I move the laptop through to the dining room (I feel like working at a desk/table), brew myself a cup of green tea and get down to doing some work on a website I’m prepping at the moment for a new project that’s hopefully launching in the next few weeks. I realise there’s a lot more to be done than I thought and I hit up some WordPress forums for a bit of help with some coding.

After an hour-and-a-bit of that, my brain is a little too numb to focus on any one tsk any more, so I set about backing up all of the various blogs and websites I run2, whilst reading some wisdom of Seth Godin, my new guru of choice, and catching up on some news websites I like to stay abreast of, like Mashable and Hollywood Wiretap, the latter of which is a little devoid of news due to the NY break, being trade-based.

I sort out a calendar-syncing issue K and my computers are having and eventually, around 6am, I’m finally too tired to think and I take myself to bed. I get upstairs to discover that K is also still awake, although she has a higher tolerance for just lying in bed when failing to sleep.

We both turn out lights out and try for some sleep, which eventually comes our way.

I wake around 11.30 and drag myself out of bed to eat something and knock back my a.m. dose of meds that are now a little late. I wolf down a bowl of cereal and the tabs, shoot-up a good dose of insulin3 and take myself back to bed for more rest.

I snooze lightly but happily for a couple of hours and eventually drag myself out of bed around 2pm, brewing myself a cuppa and hitting the sofa to chill out with some TV in the background while I surf the ‘net and investigate Squidoo, a rather neat-looking idea that is currently intriguing me.

K gets up and I make more tea and we sit and chat with the Strictly edition of Question of Sport on in the background. Tea down, I decide to get off my butt and go for a walk around the village, the old parental mantra of “a little fresh air does you good” ringing in my ears.

On my way round I stop at the Co-op and pick up some grub for dinner and some bits and pieces for lunch tomorrow when K’s girly mates (plus manly men, plus bambinas) are coming over for a post-Christmas catch-up.

I get home and K is busy cleaning, tidying and taking the decorations off the long-dead Christmas tree. I take the tree out, along with a few bags of rubbish and recycling for he outdoor bins, then sort dinner out with our revived George Foreman.

We eat, clear up the hit the sofa to watch ERIC AND ERNIE on Sky+. BBC drama is usually good quality, but even by their standards, this was a doozy of a drama, both of us really liking it.

After the film I go for a bath to chill myself out before sleep4 then come back downstairs to grab my evening meds and update the blog while K switches places with me in the tub before we both sack out for sleep.

1. or brain, not sure which [↩]
2. mostly through the infinitely adaptable WordPress platform, which makes it incredibly easy to backup [↩]
3. it was a slightly naughty cereal [↩]
4. in the vain hope it might help tonight [↩]

It’s been a while. In truth, I didn’t want to blog until I could find something positive to put down on these pages. And after a month like January, that’s been very, very hard work.

In addition to the funeral of K’s aunt, who died in late December, this month has seen us lose Jess (as detailed in my previous post) and then, last week, a very close friend’s baby brother, too. It’s been an absolutely heart-wrenching start to the year, especially after 2010 began with such excitement and promise.

I’ve also been hinting and nodding towards a new project which was supposed to be up and running by the end of January, that still hasn’t taken off. However, the reasons for that delay are more exciting than they are dispiriting, but all the more frustrating that I can’t share any details of what’s happening just yet.

One element of the project I can talk about is the attempt – along with my band of merry men – to complete the 3 Peaks Challenge in May this year, the weekend before my 28th birthday. It’s a truly daunting task and the most common reaction I get when I tell people about it is, “Why?”.

So I’ll tell you all now to prevent the mass of comments and emails about it following this post: because I can. Because I’m now able to push myself physically; because I’m able to see what my mental strength can carry me through; because I survived when others didn’t and have been given the perfect opportunity to do the things I want to do; because I can help to show the world just what an amazing difference organ donation can make to someone’s life.

This time three years ago, I was still recovering from Christmas and wondering if I’d see my 25th birthday. From then to now I’ve been able to go the kinds of things I only ever dreamed of and pushing myself physically and mentally through the toughest of challenges is something I’ve always wanted to do. And now I can.

There will be more details on the Challenge itself as well as the wider project as things progress, but today felt like a good day to sit myself down, slap myself round the face, pull myself out of my funk and start moving forward with the gift that is another year of life. Today was my first session at the gym in preparation for the 3 Peaks and it hurt like hell – but the pain of physical endeavour pales in comparison to the pain that my friends and their families have been through in the last month.

This is for everyone who can’t, everyone who wants to and everyone who never will achieve their dreams.

The turn of 2010 was filled with so much promise. Despite the difficulties of 2009, the challenges, the ups and downs, I’ve been incredibly excited about the prospects for the new year. And I still am.

But not all great things can come to pass and, following my previous post, most of you will now be aware that Jess lost her fight late on Tuesday night. After four years on the waiting list (two years longer than anyone ought to survive after being listed), Jess was just too weak to stand up to the rigours of the massive transplant surgery she underwent at the end of December.

A fighter to the last, she was up and about late last week, starting to be moved around by the physio, but she was hit by insurmountable post-transplant complications that her body just couldn’t cope with. She died peacefully with her family by her side.

Tributes have been pouring in on Facebook, Twitter and all over the news pages and TV channels which followed her story so closely. Many, many people have been affected by Jess, some who never even met her. Everyone is now feeling the overwhelming sadness and sense of lost that is infinitely magnified for her family.

Jess death will not be in vain, that much is clear. Despite the grief throughout the community, campaigners who’ve worked with and alongside Jess have already got their heads down pushing forward into new plans, ideas and ways to ensure that no one in the future has to wait until their too ill to receive a transplant.

As for me, the pain of losing two friends in two months is strong, but not as strong as my determination to make the most of the new life I’ve been given. The new project I’ve been working on for the last couple of months is finally coming to fruition and I’m pulling together several strands of things I’ve always wanted to do.

Here’s to a 2010 that serves not only to bring health, joy and happiness to all of us, but also to honour the memory of all those we’ve lost. Take care of yourself and remember to try – hard as it my be – to smile through it.

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.