Caroline’s transplant story: “Never give up – even when you want to.”

Caroline has had two liver transplants and has shared her story for Organ Donation Week. Thank you very much, Caroline!

Never give up - even when you want to.

"I've had two liver transplants and both were totally different experiences.

"My first transplant was 18th September 2007. I was a 28 year old single mother of three. I'd had sickness and diarrhoea for three days. Fortunately my mum was off work so she could help look after the kids. On the third day she came round I was in bed and couldn't move so she called an ambulance. I was drifting in and out of consciousness.

"I vaguely remember the paramedics coming into my bedroom and taking me down the stairs. I woke up a few weeks later in Kings Hospital and was told I had been seriously ill with multi-organ failure and had had a liver transplant. They don't know what caused it and might never know. I spent a while in hospital because I had to learn to walk again and learn how to do all the simple stuff we take for granted.

Recovery

"My recovery was very up and down. After I was discharged I ended up with fluid on my lungs and spent a week in hospital, then at Christmas I ended up with an infection and spent another week in hospital. I ended up with rejection and spent another month in hospital. After that life was good. I had to deal with side effects from the tablets but I was alive and able to bring my kids up.

"In 2015, I bumped into an ex of mine from when I was 16. We got talking and have been together ever since. We were due to get married in 2018 but unfortunately we had to postpone the wedding. In December 2017 I had food poisoning. I went to the doctor and was given antibiotics. That week I'd feel okay one minute and the next I'd be really ill. I developed a pain in my shoulder so I went back to the doctor and got given some cream.

"By this time I had lost about a stone in weight so I went back to the doctors who ordered a blood test. They phoned me later that day to tell me my liver numbers were over a thousand and that I was being admitted to Kings again. I found out there was a problem with my bile ducts and suspected Primary Biliary Cholangitis (PBC). I then spent the next year in and out of hospital with infection after infection.

"At the end of March 2018 I went for an assessment and several tests to see if I was eligible for a transplant. In April I was put on the list. Every couple of months I was having stents put in my liver to help with the flow of the bile. I was permanently on antibiotics to try and stop infections.

Second transplant

"In early September 2018 I went yellow and had awful itching - I was constantly scratching and nothing was helping. I had insomnia for days at a time then I would be constantly sleeping. In January 2019 I found out I had a year at best without a transplant. They were having difficulty because my blood group is B+ and I'm quite small.

"We went through a few different options about what kind of liver I could receive and was told I could have a live donor. My partner, my son and my daughter's boyfriend all went and gave blood in order to find out if they were a match to me. My partner was a perfect match so he had to go through several tests and was approved to be my donor.

"By this point it was beginning of February 2020. We were out shopping one Sunday when I got the call. The next 24 hours were a whirlwind but unfortunately, after further tests, the liver was deemed unsuitable. I was finding it harder and harder to stay positive as I was feeling weaker and sicker every day.

"Then lockdown happened in March and we didn't know what to think as we knew hospitals might stop doing transplants. April 6th 2020 I had a phone call to say they had a liver for me and that an ambulance was on its way to pick me up. I got to Kings and I received my transplant on 7th April (my 41st birthday). I am now dealing with some health issues due to being so sick for so long but at least I'm still here!

"I have recently been able to get married - a day all of my family and his didn't think we'd see. The hardest part of the whole thing was seeing my family worry so much about me, especially my parents and children. I'll never be able to thank my donors' families enough. My life has been saved twice and I got to have my special day because of them. Never give up - even when you want to. Find something to cling on to, some hope or dream, and keep going."

Please do not reproduce or republish the patient stories on this website without our express written permission. If you would like to use this content please email at us media@britishlivertrust.org.uk to discuss. You can view our full websites terms and conditions here.