My second call for transplant

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 rings.

We wake the kids up. All 3 of them are excited that I've had the call to go for the transplant. While they understand that there will be a lot of recovery after the operation, this is the big step for them. This is where daddy starts getting better, where the uncertainty and waiting ends, where life might get back to whatever normal used to look like. We pray together and then the hospital transport arrives to take me back to London.

Bex and I message each other. We think that this time it's going to happen. We start to dream about life after the transplant.

3:30am I arrive on the ward. I know the drill this time. Blood tests, ECG, chest x-ray and then lots of waiting to hear whether the liver is definitely good to proceed with.

1pm I have a call with one of the transplant coordinators. The operation to remove the organs from the donor has been paused at the request of the team who will be transplanting the heart for someone else. The waiting is tough but this reminds us that a number of people's futures are dependent on what happens today and we are connected via the incredible generosity of the donor and their grieving family. The transplant coordinator also braces me for the operation not proceeding. It seems there is some question as to whether the liver really will be a good fit for me. To be honest it all seems a bit vague.

3pm Everything changes. The transplant coordinator comes round and fills me in on all that has been going on. Apparently 1 hour after the liver was offered to me, another patient at the Royal Free was added to the "Super Urgent Liver Transplant List". This list is for those who need a transplant in the next couple of days or else they won't make it. The liver that I had been offered is actually a good fit for me (despite what had been implied earlier) but is also a very good fit for this other patient who needs an urgent transplant. They want to give the liver to the other patient and, while it doesn't depend on my agreement, I do wholeheartedly agree that they should have the liver ahead of me. Apparently this is such a rare event the coordinator has had to get agreement from all the other UK transplant centres to reallocate the liver. He tells me it is only the second time he has come across this happening. They still keep me prepped to go as I will be plan B in case the transplant doesn't go ahead for the other patient for whatever reason.

As I say, everything changes, I am now praying that the transplant goes ahead for this other patient and that their life is saved and transformed. The enormity of everything really hits home. If the timing had been a few hours different and I had received this liver then someone else may have died. We know that overall there are not enough donor organs for everyone who needs a transplant and so, whenever it might be, if I get a transplant then someone else won't. An algorithm is picking which of us get a future and which of us don't. It is horrible to think about. 

As seems to be the case a lot of the time, I am still in a place of uncertainty. There's a slight paradox to being dressed in a hospital gown for a life changing and needed operation that you now desperately hope doesn't go ahead today. 

At 6:30pm we hear that the operation has gone ahead for the other patient. Bex has come down to London with a good friend who gives us a lift back home. So I'm 0 from 2. Two trips to London, two days filled with different emotions and uncertainty, two journeys home still yellow, still fatigued, still reliant on another family's generosity in the midst of their tragedy if I am going to come through this. These days are so incredibly tough and yet in the midst of them I know that, while I have to wait a bit longer for mine, some people had their new start today and that is amazing.

The next day we go to our church. I sit and sob. I know that the right decisions were made the day before but I tell Bex that for the first time "I thought it was my liver". I'm realising more and more how unwell I am and the waiting and the not knowing if I will be one of the lucky ones is getting harder and harder. Please, God, would I get a new start too.