Posts

PSC Support Information Day Talk

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Last week I was asked to share some of my story of liver transplant at the PSC Support Information Day in Manchester. It was great to meet others who have PSC and a number who have had transplants too. I'm always encouraged to see or hear about those who had transplants many years ago. Anyway this was what I had to say....

Life is Short

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I started writing this post about 6 weeks ago to reflect on the deaths of 5 friends last year. Since then it's become 6 friends- some I've known for many years, some I met this year. I don't know what to write. I want to find the beauty in the ashes but I can't. The beauty in each of their lives is easy to see- I've sat through the funerals filled with tales of love and humour and joy- but their deaths are all just tragic. I still hang on to hope and I believe that good and beautiful things may well start to grow from what is now just ashes. And they will be great stories of resilience and triumph. But they will be despite the ashes not because of them. We often hear talk of people going to a better place and the hope of heaven. And that provides some comfort but if heaven is eternal then it can jolly well wait a little longer as far as I'm concerned. I take nothing for granted any more but I am blessed with the very real possibility that I could see my kids gro

Life is good

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At the start of June, while I sat in a room at the Royal Free, oblivious to the covid that was about to scupper my plans to pop downstairs for a new liver, I wrote a list of things I wanted to do after I had had the transplant.  This is an update on how I'm getting on with the list:- I want to eat pizza. The hospital catering chose not to fulfil this desire and the doctors sent me home on a no fat diet for a week (I checked and pizza does have some fat). However, I believe I achieved this goal within the first few days after the no fat diet ended. Tick.  I want to play 5-a-side. Sport has been a source of contention between me and the Drs. I am incredibly keen to get out and play all the sports. They are incredibly keen that I don't give myself a hernia. But from 6 months post op they say I can go for it, so I expect to tick this off the list in the coming weeks.  I want to watch the sunset in my new bedroom. I   realise the wording here could lead to a misunderstanding so, for

Trust

One of the best things to do on December 1st is to log out of all social media. Failure to do so can lead to hours of frustration trying to find anything of any interest among the 30 trillion identical posts in two distinct categories. Firstly, Christmas trees. Oh look, everyone got a Christmas tree! And did they put lights on it? Yup. Baubles? Uh-huh. Draped it in tinsel? How did you know?! Isn't it fun to see the way everyone decorates them slightly differently from each other? No. No it isn't.  Secondly, Spotify Wrapped. Once a year, at the start of December, Spotify decides it's vitally important to tell us what music we've been listening to the most this year. And it's obviously a hugely anticipated moment because, for some reason, none of us already know what we've been listening to. And in our excitement we rush to tell the rest of the world. And then it turns out they've also gorged all year on a feast of Ed Sheeran and Kate Bush. Hooray! While never

Ward Grand Slam

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Most floors at the Royal Free have 4 wards arranged in a square and named based on the direction they face e.g. 8 North, 8 East, 8 South and 8 West. When I arrived for my transplant I was given a room on ward 10 East. After surgery I was in ICU on ward 4 South. From ICU I travelled back up the building to a room in 9 West. 9 North is the normal ward for liver transplant patients and I was moved there a few days before they let me go home.  Having stayed on wards facing all 4 compass directions and done so in the correct order going round the compass, I have achieved what is known as the "Ward Grand Slam". As far as I know, I am the first and only person ever to claim this accolade. I am also the creator of this title and, until someone reads this post, the only person that even knows about it. I suspect the Royal Free will want to put a plaque up to commemorate my brilliance but my humility will cause me to turn down the request. All jokes aside, I cannot tell you how much pl

Opioids, Isolation and Tears- Life in ICU

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The 6 days I spent in ICU after the transplant operation were unsurprisingly the toughest. I batted away my body's cries of "What the hell has just happened?" with regular dispatches from the fentanyl opioid trigger in my right hand. Even at my most awake I was still drowsy and my speech was weak and slurred. Gradually I become aware of all the new "wires" going in and out of me- 3 cannulas in my arm, a drain on each side of my stomach, a catheter, oxygen into the nose (not really very intrusive) and at least 2 lines going into my neck. I don't remember it happening but the breathing tube I had in during the surgery was removed quickly once I was awake. A post-op PCR test returned a positive result (probably still related to when I had covid a month before the operation) and meant that, after my first day or so in ICU, the team decided Bex couldn't visit me anymore.  So much happened during this time- some of which I was aware of and some I only began to

My third call for transplant

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I received my first transplant call within 5 days of my blood tests suddenly deteriorating. I received my second call within 3 days of being reactivated on the list having got over covid. While there was no way of knowing when the super whizzy liver transplant algorithm would next summon me to London,  our expectation was for something similarly speedy. We ended up waiting 10 days- not long in the grand scheme of things but a seeming eternity when you are grappling with not knowing how long you can survive without the operation and you're praying/pleading with God each night that the call would come. For every 10 of us who get to have a transplant, there is 1 who doesn't survive long enough to hear their phone ring with that call from the transplant coordinators (based on the latest figures I could find). The wait for the 3rd call was really agonising. While there are many other variables that determine who gets offered each organ that is donated, the urgency of need of transpl