There's one word that fills an organ transplant recipient, or potential transplant recipient, with dread: 'rejection'.
TL;DR: I've just experienced an episode of rejection of my transplanted liver, but I seem to be coming out of it ok 🙂.
Before starting on the transplant process last year, I thought that organ rejection was an all-or-nothing thing. I thought that if rejection happens, it was like: 'well, good luck, go back on the list and hopefully you'll have a better time with another organ'.
That's not actually the case. Apparently, rejection is a common thing in the first year after transplant, and is treatable in most circumstances with some tweaking of the immune suppressing medications.
At the beginning of April, I had my own rejection episode. After doing some routine blood tests, I was called to come into hospital. My liver function tests (LFTs) were worryingly high. They had been a little high in the preceding blood tests, but they had worsened significantly.
I had a liver ultrasound done, which showed nothing physically obvious that could be causing issues, so I was admitted into a bed and scheduled for a liver biopsy the next day. The previous liver biopsy I had was when I was undergoing diagnosis for my original problem in 2010, and I still remember how sore I was after it.
This time, the biopsy didn't seem as bad. I'm not sure if it actually was better: in the years since 2010, I've endured a lot of hospital and radiology/procedure/surgery stuff, so it might just be my relative medical tolerance and inexperience at the time. Also, the doctor said the lack of connected nerve endings to the transplanted liver might be a factor 😁.
It was weird being in hospital this time. First, I felt totally fine. Rejection often doesn't have any early symptoms. For previous hospital stays, I've always felt the reason I needed to be in hospital: intense pain, infections, fevers, bleeding, etc.. This time, not at all. The other weirdness was how quiet the hospital was. All non-essential stuff in the hospital was cancelled at the time, because of the COVID-19 lock downs. The nurses and radiology people were commenting how quiet it was, saying it felt like the calm before the storm (thankfully, a month later in Australia, there has still not been any big spread of the virus).
The biopsy results mostly pointed to rejection, so I was put on a new medication regime to hopefully fight it off. This involved 3 doses of IV steroids, being discharged from hospital, and then temporarily ramping up my other oral medications with more frequent blood tests.
Over the past month, my LFTs have gradually improved, and this week they were all back to normal 🎉. I'm still being slowly weaned backed to pre-rejection levels of my medication, but things are looking good.
Because of the steroids and their effect on increasing appetite, I've put on some weight over the past month. But if that's the worst thing from this episode, I'm happy.