This story follows Janet’s diagnosis and transplant journey from 1995 until she passed away in 2024
When Janet was placed on the liver transplant list in 1996, she held on to the fact that the longest post-transplant survival at that time was 15 years. In fact, her donor’s generous gift gave her 27 more years with her family. Now Janet’s daughter, Rachael, shares her mum’s experience of living with a long-term liver condition. Thank you, Rachael
Mum was the heart of our family and lived her whole life for us and her faith. Her death in September 2024 has left such a huge gap, and we’re not just grieving for Mum, but also for the donor liver she received in 1997. The generosity of her donor and their family gave us 27 more years with her that we otherwise wouldn’t have had.
Mum first started feeling a bit unwell in early 1995 and went backwards and forwards to the doctor who put it down to the menopause. Then in the summer of 1995 she developed a distended stomach and became jaundiced. Blood tests confirmed cirrhosis and the GP asked if she drank, but Mum had never been a drinker. She was now quickly referred to the Queen Elizabeth Hospital in Birmingham for more tests and her doctors thought it was either primary biliary cholangitis (PBC) or primary sclerosing cholangitis (PSC). Mum was placed on the transplant list in 1996.
Liver transplant
At this point PBC had only just been recognised by the medical profession as a disease, so Mum wasn’t on a lot of medication. She was in and out of hospital with oesophageal bleeds, had lost a lot of weight, was jaundiced and itching was a big issue, but she battled on. Her faith meant a great deal to her, so she prayed a lot and threw herself into cooking, baking, gardening, and fundraising. Because she had to have a low-salt diet she created lots of no-salt recipes that impressed the doctors and she teamed up with the dietitian to produce a recipe book for liver disease patients.
Just three months after being put on the transplant list Mum got the call. They didn’t say they had a liver but asked what her health was like and told her to make her way over to Birmingham. She was taken to theatre the following morning and the transplant took eight hours to complete. Mum came out at around teatime and was put on a ventilator in intensive care. After spending the night there, they woke Mum, got her out of bed and she walked to the high dependency unit.
The morning after the transplant the first thing we noticed was that Mum was a lovely pink colour, it was wonderful to see because she’d been so yellow. She was in hospital for just ten nights in total and had some rejection issues about six months later which led to her steroid dose being adjusted. Otherwise, she had a really good recovery. Mum had been terrified of the transplant but was also overjoyed to get it because she’d been given a new chance. At that point the longest transplant survivor was 15 years and she was holding onto that.
Mum knew there was a chance that the primary biliary cholangitis could return
It was only after Mum’s transplant that PBC was officially diagnosed and around 10-15 years later it came back in the new liver. Mum knew this could be a possibility and she also developed other autoimmune conditions such as coeliac disease and Sjögren’s syndrome. Doctors prescribed ursodeoxycholic acid to slow down the progress of the PBC – she took it for quite a few years and was more or less all right, but gradually things started getting worse. In 2021 she developed fluid retention, her kidneys started failing and oesophageal varices were discovered during routine screening. She was given more medication, but another transplant was out of the question because she was now 80 years old.
Again, Mum refused to let her illness stop her and she continued gardening, cooking and baking until the start of 2024 when her health really started to deteriorate. We noticed she was getting more tired and had no energy – where she’d normally pushed herself, she was now sitting more.
Things now became very difficult for Mum. From May she was in and out of hospital with complications and suffered terribly with severe oedema in her legs and ascites which she had drained. She was fortunate not to have any bleeding from the varices but the hepatic encephalopathy was the worst. It started with slight memory problems, then progressed to tremors, slurred speech and unsteadiness on her feet which resulted in her falling and fracturing her hip. She had her hip fixed but never walked again. In spite of everything Mum was so brave and never complained.
Grateful to donor
Mum was admitted to a hospice on August 16th 2024 and we spent her final four weeks there with her before she passed away. She had said her biggest aim was to get to her 80th birthday and celebrate her and dad’s 60th wedding anniversary. Both she and my dad were 80 in 2023 and they had a big celebration for that, and spent their diamond wedding anniversary together in the hospice eleven days before she passed away. So she managed to achieve both. 
I’m so proud of my mum and love and miss her every single day. We’re so grateful for the extra time the donor gave her. After the transplant, Mum had written to the donor’s family to thank them and would also send a card every year on the transplant anniversary. She hoped they might reply, they never did, but we understood and respected that. At Mum’s funeral we mourned the donor liver as well as her.
I’m a healthcare professional and work in theatres so I’ve seen both sides of the transplant process. Around 10 years after Mum’s transplant I was involved in an organ retrieval. It’s obviously awful for the family, but being in the operating theatre and seeing the different teams arrive for the organs and the transplant coordinator saying the names of the people they will go to, makes you realise just how important organ donation is.
I know Mum would love me sharing this story because what her donor and their family gave us is priceless. They kept her alive for 27 more years and enabled her to meet my two children. Words cannot express the importance of that.
