Cystic fibrosis sufferer desperately needs a new liver

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NHS Blood and Transplant (NHSBT) says the average waiting time for a liver transplant is three to four months. But Sarah has been waiting for 17 months due to bad luck and algorithms that allocate organs. She even recently moved from Devon to Cambridge to be close to the city’s highly regarded transplant clinic at Addenbrooke’s Hospital in case a liver becomes available.

Last week, the strain of years of fighting for her daughter’s life led Catherine Meredith, 67, to suffer a heart attack. She is now recovering at home in Totnes, Devon.

Sarah says her ultimate Christmas present is a new liver.

And today we urge more Britons to join the Organ Donor Register, to help the dreams of desperate patients such as Sarah become a reality.

In 2020, a law change made all adults in England potential donors when they die unless they opt-out. This has boosted the organ pool. But a third of next-of-kin still block donations when their deceased loved one has not signed the register.

Some 93 percent give their blessing if their relative was signed up.

Sarah told the Express: “The wait is agonising for my whole family, the uncertain outcome constantly hanging over us. Getting my transplant would give me a second chance, time to live without the restrictions forced upon me by my illness. It really would be the best present ever.”

Mrs Meredith has never stopped fighting for her daughter. Even after last week’s heart attack, she was tweeting about organ donation from her hospital bed.

Yesterday, Mrs Meredith said: “The chance of losing my beautiful young daughter Sarah at the age of 30 due to lack of donor organs is very real. Sarah has cystic fibrosis, and due to the amazing drug supplied to the CF community after a Daily Express campaign, her life expectancy should be around 60.

“However, a rare complication of CF means she needs a liver transplant. There is no mechanism to support the liver, so at any time she could get an infection and die. The stress is unbearable and last week put me in hospital with a heart attack.

“Anyone can need a lifesaving organ. It could be you or a loved one, so please let us make sure there are enough organs for transplant by expressing our wishes to family and joining the Organ Donor Register.”

The Express began fighting for Sarah in 2019 when we launched a campaign to secure lifesaving drugs on the NHS for CF sufferers. CF is a genetic condition affecting 10,700 people. Their lungs and organs are slowly destroyed by sticky mucus. But 90 percent of sufferers can thrive if given the Kaftrio pill.

Sarah is also stricken with Alpha-1-antitrypsin deficiency, a rare inherited condition, which can cause lung and liver problems.

By August 2020 we had secured Kaftrio on the NHS and the wonder drug has helped give Sarah the strength to handle a liver transplant – but she is still waiting.

Now she has also developed portal hypertension – failure in her portal vein, which leads to the liver. This means the organ is slowly dying.

Catherine fears Transplant Benefit Score algorithms disadvantage her daughter twice by failing to take into account CF or portal hypertension.

She claims a reduction in available livers post-Covid and Sarah’s age are against her, with many patients getting new livers who are far older.

This is despite NHSBT stating: “Patients with CF-associated liver disease should be referred early for liver transplantation if there are signs of deterioration of liver function.”

Last night sister Jess Meredith, 35, said: “We will never give up fighting for that liver. I will never stop fighting for my courageous sister.”

To find out more and to register your decision, visit www.organdonation.nhs.uk or call 0300 123 23 23. Or use the NHS app to check, amend and update your decision.

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