"I have never been looked after, listened to, or helped so well before in all my life"

I’m in my mid-30s, and suffered from autoimmune hepatitis and PSC for 18 years. I was diagnosed at the age of 17 and spent the rest of my life attending hospital check ups, scans, and being admitted to hospital on numerous occasions. There was a gradual decline in my health over the years, without me realising too much at the time because I had never really been used to feeling normal.

It was when 2023 hit that it really seemed to take a dive. I felt exhausted to the point every day that it felt like I was suffering from jet lag a lot, I was losing weight, and I noticed how much the cold really got to me, I was always cold no matter the weather. 

Early 2024 things got to breaking point and I was admitted to hospital. This was the start of my journey towards liver transplant, although I didn’t know it at the time. Things got worse and worse until I was recommended for my assessment week to see if I was able to be accepted onto the liver transplant waiting list, at the Royal Infirmary of Edinburgh. This was a scary week, but I couldn’t have been made to feel more relaxed about things than I was. Donna and the rest of the co-ordinators were so reassuring, and Hannah & the rest of the nurses on the ward were excellent and made the whole week an enjoyable experience.

I was put on the liver transplant waiting list and had to wait a year until I finally got offered a new liver. The year itself was quite difficult. Gradually getting more ill and not knowing when I’d get the call, it was mixed emotions throughout the full wait. But again, the doctors and co-ordinators at my hospital check ups were really good to speak to if ever I had any questions and they are who helped me get through the waiting period. There was a couple of times throughout the process where I had to be suspended from the liver transplant waiting list due to infection, but once these cleared up I was straight back on it. 

Eventually, I got the call from Donna telling me there was a liver available for me. It caught me by surprise because at the time I didn’t know what to think. A lot of mixed emotions. I’d been ill so many years and now things were going to be different. I got to the hospital and again, like the assessment week, you’re made to feel as relaxed as possible. As if that day is just another day. And the staff are incredible at this.

Once taken for my operation, the next thing I woke up with a new liver. I feel strange even saying that right now. The next 2 weeks in hospital I can honestly say I have never been looked after, listened to, or helped so well before in all my life. Hannah, Heather, and the rest of the nurses throughout my time in the hospital are the best people you’ll ever come across. I can’t thank them enough for how they helped me over the next couple of weeks after my operation. And the doctors and the co-ordinators, I have no words to describe how grateful I am to all of them for their help and support over the last year and a half, and their continued support and help post transplant.

It’s only now looking back I realise how ill I actually was so many years. The way I feel now to how I felt then is night and day. I’m only 11 weeks post operation, and I have never felt this way before. There’s a long road of recovery still ahead of me, but I’ve had the chance of a second life with a healthy liver and I can now be confident in doing anything I want to in the future without the worry of my health negatively impacting my life.

And it’s all thanks to my consultant and nurses that seen me in the years leading up to transplant, and the doctors, surgeons, co-ordinators, nurses, and the rest of the staff at the Royal Infirmary of Edinburgh. Thank you to all of them.