A young woman who became increasingly tired as a teenager was diagnosed with a rare disease before later finding out she had liver failure – and is now facing an anxious wait for a vital transplant.
With transplant waiting lists hitting record highs, Katie Howard, 29, said she has been forced to put her life on hold as she constantly checks her phone for the lifesaving and life-changing news.
The 29-year-old said she is now living back with her family in Sturmer, Essex, and is currently too unwell to work, with only enough energy for occasional trips out.
She said she was previously living in Oval, London, and working as a civil engineer when she was diagnosed with liver failure aged 28. At the time, she was enjoying travelling to different countries, a busy social life, and playing for a local and national dodgeball team.
She described receiving her diagnosis in August 2024 as “a shock” after her initial symptoms were just that she “was more tired than normal and my eyes went a bit yellow”. Speaking to The Independent from hospital after a recent infection, she said of that moment: “I just cried a lot and held onto my partner.”
She said she was then told it could be several years before she receives a call for a transplant – or it could come that day. “I’ve been waiting for a year – constantly having my phone on me, waiting, [thinking] ‘am I going to get a call right here and now, meaning am I going to have to go to hospital?’” she said. “For me, a transplant would give me my life back.”
Earlier this year, NHS Blood and Transplant (NHSBT) revealed the transplant waiting list had reached its highest level ever recorded, with 8,000 people actively waiting for a lifesaving transplant, while there were 100 fewer deceased organ donors last year, resulting in a 2 per cent drop in life-saving transplants.
In efforts to highlight the urgent need to increase organ donation registrations, figures released by NHSBT to mark Organ Donation Week this week show that 4,900 people died while actively waiting for a lifesaving transplant over the past 10 years, and a further 7,700 were removed from the active list after being deemed too sick to receive one, with many dying soon after.
Ms Howard said she was first diagnosed with a rare liver disease called Primary Sclerosing Cholangitis, which is a disorder of the bile ducts, alongside Crohn’s disease in 2020.
The diagnosis came after several years of worsening fatigue, before nausea, pain in the area she now knows is her liver, and bowel symptoms all developed. But she managed to lead a mostly normal life, with medical checks every three months and lifestyle changes.
However, four years later, she said she began to lose a bit of weight and was struggling with fatigue before she noticed a slight yellowing in her eyes. In August 2024, she said, “I went to the shops with my partner but couldn’t carry the basket and had to go home as I couldn’t stand up.”
It was after this that she said she went to A&E, where she was admitted to hospital with an infection, then told her bile ducts had become so narrow that she had liver failure and her only option was a transplant.
“After a week and a half, I was told I needed to be added to the transplant list, that there was nothing to do to sort my liver out, it was in active failure,” she said. “That was quite a lot.”
Ms Howard said she spent several more months in and out of hospital, losing 10kg and even being diagnosed with sepsis. Her health has improved since then, but she is still struggling, often getting minor infections and is incredibly fatigued.
If she managed to get a transplant, she said: “I could go back to working, potentially go back into sport, get back into my social life and go travelling. I have so many plans for life, but I can’t do anything about them. I also want to become a mentor for other liver transplant patients.”
She added: “You don’t know if something will go wrong until it goes wrong. It could happen to anyone. It just pops up that you have a problem, and then you are in organ failure.”
Anthony Clarkson, Director of Organ Donation and Transplantation at NHSBT, said: “It’s really concerning to see the number of people waiting for a transplant slowly rising, and people are dying needlessly every day because of the shortage of organs for transplant.
“I would urge everyone who supports organ donation to register their decision and make it clear that it’s what you want should the worst happen.”
You can find out more about organ donation at www.organdonation.nhs.uk
