Callum's life is transformed following liver transplant.
Callum Brown, 34, was just 19 when he got the news that he would one day need a liver transplant. Following a 15-year struggle with his health that saw him hospitalised multiple times a year, he received a liver transplant in January 2022 which has completely transformed his life. He is eternally grateful to his donor and their family for their gift.
Callum first became unwell at 18, when he was diagnosed with ulcerative colitis, a form of inflammatory bowel disease (IBD). Despite trying to manage the condition through medication and diet, it continued to worsen, and he ended up in hospital where he required steroids and fluids through an IV drip to help him recover.
Tests revealed that he also had a form of liver disease called primary sclerosing cholangitis (PSC). A majority of people with PSC also suffer with IBD. PSC is a rare and complex condition, and with no cure, a liver transplant is the only option for someone whose condition has progressed.
Callum said: “It was obviously a shock to hear that I would need a liver transplant at some point in my life – nobody really expects to hear that news. But after my diagnosis I just put my head down and got on with things. I was at university at the time and was able to manage my conditions quite well, though I stopped drinking, which meant I didn’t go out much and didn’t see friends. Colitis flare ups would also prevent me going out, and led to me not eating, which was the wrong thing to do but I’d try anything to get things under control.
“When I started working I didn’t tell many people either. There is a lot of embarrassment around colitis and a lot of stigma around liver disease, so I usually kept it to myself. I managed to keep my conditions well controlled for a while, though I would try different medications and had various spells in hospital over the years for cholangitis attacks.”
By 2016, Callum’s PSC was progressing. He said:
“I was really noticeably jaundiced, I got a terrible itch all over my body that would keep me awake all night, I was losing a lot of weight and I was constantly exhausted. I really struggled at work, to get up in the morning and then to focus once I was there. I had a lot of brain fog in general and was just really struggling to get through the day. My episodes in hospital became more and more frequent, and my consultant could see how unhappy I was and how badly it was affecting my life.”
Callum was assessed for transplant in 2016, but it was decided that it was too soon and the risks of the transplant were too high. It wasn’t until 2020, when he was hospitalised due to a particularly serious colitis flare-up, that his consultant again raised the prospect of him being listed for transplant.
Callum explains: “My liver disease had progressed a lot and the gastrointestinal team thought that it had started exacerbating my colitis. It had always been a question of when, not if, and I was finally listed in October 2020. Once I’d been listed, I had a sudden realisation of how unwell I was. When you suffer with your health so much, it just becomes normal – being on the transplant list makes you realise how serious it is. It was a big and scary moment, but I knew it had to happen.”
Callum spent 15 months on the waiting list, and was called up on four occasions with an offer of a potential donor liver, all of which turned out to be unsuitable.
He said: “There are so many things that have to line up and so few livers, so I knew I might have to wait a while, but life on the waiting list was really hard. Every time my phone went I’d wonder if it was going to be about a donor liver, and people were always asking for updates. I was really devastated when the first liver I was offered turned out to be unsuitable and after that I was scared to get my hopes up whenever I got a call.”
In January 2022, Callum was offered a suitable liver and the transplant went ahead.
He said: “The surgery and my recovery went really well. I was out of hospital within 11 days, and it wasn’t much longer before I was up and about and able to take the dog for short walks. There was a downside in that my colitis went into another serious flare up, and I ended up having to get my colon removed in April which led to additional complications and recovery, however I’m through the worst of it now and have started work again part time.
“When I look back at photos from Christmas last year I just can’t believe the difference. Physically I can eat so much more, I just feel so much better all the time, I get better sleep, I can focus properly in work. Before my transplant I was getting really down due to the constant fear that the chance of a transplant may not come in time. I was resigned to living with my illness, and I would also get quite angry because I wasn’t dealing with it properly. The transplant has improved every aspect of my life and I’m so much happier. I just feel human again.
“I’ll be forever thankful to my donor and their family. They would have been going through such a difficult time but they still honoured their loved one’s decision to offer other people another chance at life. It’s an amazing thing. My donor has completely changed my life and I’m eternally grateful.
“That gratitude extends to the whole transplant team for their care throughout, and my girlfriend and family for their unending support during one of the most difficult times of my life.
“From my experience on the transplant waiting list, I know how much every organ counts. It’s so important to let your family know your decision so they can honour it if anything should ever happen. Having that chat is such an easy thing to do, and it could change up to nine lives.”