TL;DR version: After spending most of this year jaundiced, I'm now on the liver transplant list.
This post has taken a fair bit of mental and emotional energy to write, both of which are in short supply at the moment, so please forgive me if it isn't up to my normal (sub-)standards.
To say that this year has been challenging in terms of my health would be the grossest of all understatements. It's been a while since I last mentioned my liver disease on this blog, because for the most part, it has been pretty uneventful. It's just been the expected slow progression with semi-regular flare-ups and bouts of feeling really garbage.
In February things changed. I became really jaundiced (turning as yellow as a Simpsons character), and started losing a fair bit of weight. Unlike past episodes, the jaundice didn't go away, and my liver function indicators remained worryingly high.
After seeing the hepatologist, I was told my liver looks like it's on its way out, and it was time to go on the list for transplant. I was inducted to the Queensland liver transplant clinic, and started the process of being assessed for going on the waiting list.
This involved a barrage of tests and procedures over a 6-8 week period. If you can name a test, I probably had it done: many blood tests (the first round took 31(!) viles of blood), ECG, echocardiogram, cardiopulmonary exercise, bone densitometry, endoscopy, CT, torso ultrasound, lung function, etc.
I also had an ERCP where they managed to insert a stent, but it meant that I had to stay in hospital for about 5 days for monitoring.
Finally, after all the tests and appointments with dieticians, anaesthetists, surgeons, and others, last week it was confirmed that I had been placed on the waiting list for a liver transplant.
I'm hoping the wait won't be too long, and there's no indication on how long it might be. Available organs are assigned based on size, need, and blood type (mine is, appropriately, B positive!). I could get the call in 5 minutes, or two years.
After almost 9 years, it's been a long journey to make it here. I am both terrified and excited at the possibility of getting a new liver. I am really looking forward to the prospect of being able to feel 'normal' again, and to especially have the energy to do regular 'dad' stuff with Des and the kids.
A lot of awesome people have helped me get to this point: doctors, friends, family, work colleagues and managers. Most of all, Des has been an absolute superwoman looking after the house, kids, and also myself. I would be lost without her.
As always, your thoughts and prayers for me and the family are very much appreciated. See you on the other side!