50 Ways to Leave your Liver

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....

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...

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 misunderstand...

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...

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...

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...

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...

So much has happened since 7th June when I had my first call to go to the Royal Free for a transplant. I'm going to write a few posts covering some of the key events of the last couple of months. And we start with my second call to go for the transplant.... Having been unable to have the transplant operation on the 7th June due to testing positive for covid, I was essentially paused on the transplant list until such time as I had had 2 negative PCR tests spaced 48 hours apart. I got home in the evening on 8th June. I spiked a temperature that night, said a quick "hello" and "goodbye" to the kids in the morning and was back to the John Radcliffe hospital. More blood tests and we added "C diff" to the "covid" in my list of current issues. Two more nights in hospital and then a week of positive PCR test results. After an "Indeterminate" PCR test, I am reactivated on the transplant waiting list on 23rd June. 25th June, 1am the phone rin...

I don't pretend to have many answers about the best or right ways to raise kids and share what you believe with them. How do you teach them those things that you believe without it becoming indoctrination? What I do know is that I don't want them to believe that God is just about handing out blessings and miraculously making everything perfect for us. I want to model to them trusting in God even when everything feels too much and God doesn't seem to be stepping in to sort it out. I absolutely wish that my kids didn't have to go through all they are dealing with on this transplant journey. I wish I could tell them that everything will be OK. But as we walk this path as a family there are some beautiful moments. Yesterday our church gave us some time to share what was going on and then a number of people gathered around us to pray. Our 10 year old joined us at the front and stood and hugged me while people prayed. She knows this is her story. It's her pain and sadness...

On Tue the 7th June I got the call to go to have a transplant. I was in the John Radcliffe hospital in Oxford at the time and, unsurprisingly, it proved to be a big day with lots to process. I decided to try and record an account of the day and here it is. I inevitably will have missed some details and not explained things well but it should give a reasonable picture of my day...   

Today I want to live and see tomorrow, And then I want to eat pizza,  I want to play 5-a-side, I want to watch the sunset in my new bedroom,  I want to curl up with Bex on the sofa,  I want an ice cold coke,  I want to go to the beach,  I want to do the school run,  I want to sing loudly when everyone's out,  I want to go to the cinema,  I want to walk in the Transplant Games opening parade,  I want to make jokes about willies,  I want to be less yellow,  I want to go to a gig,  I want to play board games,  I want to climb a tree,  I want a massage at a spa,  Yet not my will but yours..... Today I want to trust God with whatever tomorrow He has planned. 

Last Wed I got some blood tests done. At 10pm I then got a phone call from the liver consultant.... "Hello, James. We've got your blood results and your bilirubin is currently 400....." 400? Wowser! Normal range is 0-21. Three years ago I peaked at 390 but, blimey, this means I've just broken my record. I don't know what to say... I'd like to thank my wife for her love and support, my parents for teaching me to strive for excellence, my liver for always giving up on me and for... Oh wait the Dr's still talking....something about an MRI scan.....wants me to come in to hospital....liaising with the transplant centre to keep them updated....  Of course. While my love of numbers means I feel a sense of achievement at breaking the 400 barrier, it does mean I'm really not very well. Rats! So I've been in the hospital for the last 4 days, waiting for the Queen and everyone else to stop scoffing scones so that the hospital can kick back into gear. They wan...

 I read Adam Kay's book "This is Going to Hurt" a year or so ago. I thoroughly enjoyed it and laughed along with the various hilarious tales of stupid things people had done and stupid places people had put stupid things. By contrast the recently released BBC series of the book survived about 15 minutes before I had to turn it off. I'm sure it's excellent but there was a foot and I didn't like it and it turns out that I can read about icky medical things but I really don't want to see them. Along with the comedic tales, the book also has some more poignant moments. It was one such moment that made me pause and take a breath. A patient that he is reviewing in hospital begins coughing up large amounts of blood, his registrar diagnoses oesophageal varices but by the time they have managed to get a tube into the patient's throat, the patient has died.  The reason this story got to me (other than just because it was generally horrific) is that I have oesoph...

I am a Christian. Pretty much always have been. I hesitate to say this as everyone will have a different take on what that means and says about me. I often think about my faith like a jigsaw where there is ultimately a picture of God or a spiritual dimension that is so vast and complicated we will never understand it or finish the puzzle. And yet we can still put together groups of pieces and see a part of the picture, find something to marvel at, to learn from and be changed. I believe Jesus and his words and actions are a key part of the jigsaw. But I regularly look at pieces I once put together and question if they really fit or line up like I thought. I'm sure it's possible to go through the transplant journey without dwelling on this but the fact is that, in most cases, your life saving operation was only possible because of the tragedy of someone else's death and that the celebration of your family and friends can't be separated from the grief and tears of another...

Bags are boring. Plastic bags are boring and frustrating because you can't open them without licking them and, for a good amount of the last couple of years, you couldn't lick them unless you fed the bag inside your face mask and then you end up looking like an idiot*. Designer handbags are boring and also annoying because they pretend not to be boring by costing the same as a small car but they are still just a bag. Suitcases are boring unless they have wheels and you are under 8 and can ride them carefree around the airport. Bin bags sit in a pile and silently mock you for forgetting bin day yet again. Sleeping bags are literally the worst kind of bedding. Teabags make tea which is the epitome of a boring drink. Bagpuss is mind numbingly dull. Bagpipes are a kind of musical GBH etc etc.  And quite possibly the absolute worst thing about being on the transplant waiting list is having to pack a bag to take to the hospital when it's time to go and pick up your new liver. Pac...

In a parallel universe to ours, I wake one morning and take a couple of swigs from the tequila bottle on my bedside table.  Stumbling to the kitchen, I make myself my first few cups of coffee of the day. A little whiskey gives the coffee a bit of a kick and I light up a cigarette and contemplate how lucky I was to grow up without exposure to farm animals. In the universe from which I blog now, I am teetotal having previously been a very light and occasional drinker. I have never smoked and never been a coffee drinker. As a child I dabbled in the occasional visit to a farm. I am also on the liver transplant waiting list after a condition called Primary Sclerosing Cholangitis (PSC) has properly made a mess of my liver.  Fun fact: parallel universe me is less likely to need a new liver due to PSC (NB. it is possible parallel universe me would need a liver transplant from his heavy drinking but not from PSC). Yep, that's right, alcohol consumption has no bearing on your probabilit...