50 Ways to Leave your Liver

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...