Monthly Archives: May 2011

After the travails of the last three weeks1, it’s time to get back to the business of blogging and creating top-quality content for all my readers again.

To that end, a very useful little initiative popped up in my Google Reader RSS feed this morning – The Domino Project‘s #Trust30 initiative, based around their new release Self Reliance by Ralph Waldo Emerson.

#Trust30 is a month-long commitment to create something new every day for 30 days, whether it’s blogging, writing, painting, filmmaking or anything in between. The aim is simple to create.

I’m committed, are you? If you’ll be taking part, leave us a link to your site in the comments so we can all help to hold each other accountable.

1. detailed in 3 posts on my Journal Blog here, here and http://www.olilewington.co.uk/smilethroughit/2011/05/31/the-sage-concluded/ [↩]

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 [↩]

Thanks to an unscheduled 10-day stay at the pleasure of various hospitals and doctors1, it’s been far too quiet on here.

Rest assured, normal service will resume after the weekend. Thanks for sticking with  me.

1. more on my journal site [↩]

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 [↩]

Sometimes knowing when to stop trying to be the market leader is good for you.

Everyone wants to be Top Dog and we all want to be known as the go-to place for people to find our products or services. But there are times at which accepting that you’re not the biggest can be a distinct advantage.

Take MySpace, for example. Yesterday, I tweeted that they have release a new app to help musicians maintain their MySpace page and update their Facebook Fan Page at the same time. While I’m sure that MySpace is still smarting from being the go-to social networking site for a good couple of years way-back-when, they have now accepted that the vast majority of people use Facebook as their primary social networking tool.

The problem that MySpace faces is that while it’s ingeniously designed for musicians in particular, it’s fairly useless to those individuals and bands if the only people using the site are the musicians and bands themselves. The artists want to connect with their fans and the easiest way to do that is through Facebook.

By effectively helping their members to advertise themselves on Facebook, MySpace are helping to ensure that those who prefer the interface and usability of their site over Facebook can still use it to reach millions of fans who may never have discovered them if they had stuck solely to Facebook.

Biggest isn’t always best, especially if you know how to piggy-back on the success of a larger player to give your core customer base exactly what they want from your product.

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 [↩]

As a freelancer making films, working with social media clients and running a successful indie film website, things can sometimes get on top of you, hence the lack of blog posts here in the last couple of weeks.

Far from being an excuse, it’s a point worth noting that sometimes it’s OK to take some time away. I’ve talked before about how focusing on something new can be refreshing, and also about the good points and bad points of taking a break from your blogging – and work – routine.

If you’re working as a freelancer there will be times when your workload swamps what you do and writing a blog seems like the last thing you want to do. Companies have a huge advantage over individuals in having people to delegate blogging duties to when the primary blogger is away1.

What I failed to do (and will rectify over the next few days) is to build up a catalogue of pre-written posts to put up when I don’t have time to dedicate to writing a new post every day. By marking out a posting calendar and making sure there are always posts in the bank, freelancers and individual bloggers can make sure they’re never away from their post for too long.

Because we all need a break from time to time and it’s good to get away (as evidenced by my three days in Durham for a charity event this week), don’t let yourself fall into the trap of feeling you must always be “in the office”.

1. Indeed, if you’re an organisation with more than a couple of employees or partners you should make sure everyone understands the needs of your blog so you can step in [↩]

I’ve just got back from 3 days in Durham where I was asked to talk at an event for the CF Trust for CF Week this week.

It’s an event I first spoke at 3 years ago when I was just 6 months post transplant and it was great to go back to the lovely ladies lunch and share my story so far as well as my hopes and dreams for the future.

The biggest part of my speech was concerned with helping raise funds for the CF Trust, who work tirelessly year-in, year-out to fund clinical research to improve drug therapies, hospital care and overall outcomes for people with CF across the UK.  My hope – as I expressed to the women at the lunch – was that by helping fund the CF Trust’s research into gene therapy and developing a therapy that prevents the eventually-fatal lung damage from CF we can prevent anyone having to go through what I’ve been through.

Not only have I, obviously, been through the hellish wait on the transplant list not knowing whether my call would come in time or if I would die while I wait, but I’ve also had to watch far too many of my friends die while they waited. And now I’m having to watch Tor (who I wrote about most recently in my previous post) endure over twice the wait I went through and see the life and the hope slip in and out of her eyes each and every day.

By donating to the CF Trust this week (or any week), you can make a huge difference to the lives of children being born with this disease today and prevent them ever having to experience the truly devastating side-effects of a life lived in the shadow of an early death.

This time in 4 weeks I should hopefully be nestled in my bed starting two days of recovery from the 3 Peaks Challenge and right now I’m hopeful, a little fearful and very, very tired.

Training has stepped up a notch, there’s all kinds of logistics to organise, a team-meeting with 5 of apparently the busiest people on the planet and I’ve still got to fit in work, quality time with K and a trip to Durham for a fundraiser for this years’ CF Week in aid of the CF Trust, a cause you’ll all know is close to my heart.

Today, though, that all blurred into fairly frank insignificance following Tor’s latest post on her blog following her seventh false alarm call for transplant.  I’ve written before on here about my false alarms, but also about how Tor inspires me to want to do better, to push myself harder and to achieve everything I can while I’m able.

One quote from her post today stood out for me, when she talks about her fears for the future, post-transplant:

I [am] worried that I … could never live a life that was enough to honour my donor.

This is a fear that lives with me every day. It’s not a fear that overwhelms me, but rather motivates me and gives me my ultimate drive to succeed, whether personally, in business or my personal life.

If my donor is looking down on me now, I want them to be proud of me. I want them to feel that they made the right decision in letting me live after they died. I want them to know just how much I value the gift I’ve been given and how I live each and every day in their honour, under their guidance and with their presence always around me.

That’s why I’ve started chasing the dream of the 3 Peaks and it’s why I want to keep pushing myself to do more.