50 Ways to Leave your Liver

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.