I’ve decided I’m going to blog the journey this time. Last time I was told I needed a new liver (not a sentence I thought I’d ever say), I was already seriously ill, completely out of it on ketamine and morphine, so didn’t have the capacity to document any if it.
Here is what’s going on:
In 2011, I had biliary stones twice (basically the same as gallstones but made of bile) because my bile duct wasn’t draining properly, meaning a build up of bile which turned into stones. The doctors decided that to stop this from happening again, they would do a roux-en-y operation, meaning they’d make me a new bile duct from some bowel and then everything would drain and work nicely. That was done in February 2012.
This year, particularly in the past couple of months, I’ve had a lot of hospital admissions, most recently on September 8th. I was spiking temperatures and throwing up, and on the Monday, Charlie Craddock (haematology consultant) decided that all these infections were probably related to something dodgy going on in my liver, and got that team involved. I carried on getting temperatures for about a week while the microbiologists grew bugs from me and determined the correct antibiotics to treat them.
By the 18th, I was ready to physically hurt someone. I was feeling fine, but people were constantly waking me up to stab me in the hand incompetently and give me enormous bruises, and my veins were a total mess. I’d had a terrible night, so I spent the day convincing doctors and nurses that it was imperative that I go home, and they agreed that I could, provided I go back three times a day for antibiotics, and on Friday morning we’d have a meeting with James Ferguson, my liver consultant, about what the grand plan would be.
So on Friday morning, my parents and I went to the QE for my last dose on vancomycin and to find out what was going to happen. And here it is: the tube that the surgeons reconstructed last year is now malfunctioning in a different place. The tube they did is fine, but it branches off in two different directions and only one side is functioning properly and letting the bile drain freely. However, on the other side, the tubes are blocking and causing “stagnant pools” of bile to form, so bugs start to grow. And they’re weird bugs that are resistant to usual antibiotics so I have to keep having the antibiotics until they eventually die. Then they think I’ll grow more. This is going to keep happening and continue to get worse, until the tubes block completely which is when I’ll be in real trouble again. And the only way to fix me is to do another liver transplant. So this week the doctors will do a bunch of tests and have lots of chats, and they’ll put me on the list.
At the moment we’re driving back and forth to the QE three times a day for meropenem to treat my current bug, and I’m trying really hard to eat more because I’ve already dropped down to 7 1/2 stone and I really can’t afford to lose any more. I’m going to get back to the gym to try and build up my muscles again too, as I need to be as strong as possible when the transplant happens. Last time my recovery was incredibly slow because I was so weak, and I don’t want to go through that again.
So I will write each day as it happens, and hopefully I’ll have a decent record when this is over. I’m not going to let this destroy me.
If you want to help, sign up to be an organ donor, and tell your friends to. Don’t offer me your liver; I need a whole one so a living donor isn’t an option. I do like presents though.
I’m not going to be the one in three that dies still waiting.