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Monday, June 27, 2022

Khadijah’s search for a new liver as her quality of life deteriorates

A 34-year-old woman with a rare liver condition is searching for a new liver as her quality-of-life wanes due to the disease.

A woman living with a rare liver condition is searching for a live liver donor as her quality of life deteriorates due to the disease.

Khadijah Afza, 34, was born with biliary atresia, a condition that causes regular infections in her bile duct and liver, which is thought to only affect one in 15,000 births in the UK.

At only nine weeks old, Ms Afza received life-saving treatment but spent her childhood regularly in the hospital due to her liver condition and other complex medical needs.

She often suffers from cholangitis, an inflammation of the bile duct system, which has a number of symptoms including fever, nausea and vomiting, low blood pressure and lethargy, which sometimes results in stays at the hospital.

Now in her mid-30s, Ms Afza is searching for a new live liver donor to improve her quality of life as she waits to receive one on the NHS waiting list.

Ms Afza is searching for a live liver transplant as hers is not working well anymore.

Her mum and full-time carer, Nudrat Mirza, describes her as a “remarkable young woman,” who is an artist that enjoys painting, listening to music, going to museums and galleries and is a caring, sensitive person with lots of friends.

She said: “Khadijah was born with a very serious life-threatening condition called biliary atresia. She had a major surgery when she was nine weeks old, which was a new surgery at the time, founded by a Japanese surgeon and researcher.

“We knew when she was born that she would need a liver transplant. Often babies and young people born with biliary atresia need a transplant sooner in life, so it’s a credit to her at 34 years old.

“Khadijah has been in and out of hospital all of her life with the condition cholangitis. Unfortunately, she was born with a liver that was diseased which means it cannot regenerate itself. She is frequently ill now, and her quality of life is poor. Every time she falls ill with the condition, her liver gets more damaged.”

A live liver donor is a person who gives part of their liver to someone with liver failure who needs a transplant. This could be a friend or family member, or someone they do not already know.

“Khadijah is a remarkable young woman, she is an artist who enjoys painting, listening to music, going to mueseums and art galleries” – Nudrat Mirza.

According to the NHS, approximately 900 people in the UK undergo liver transplantation every year.

Ms Afza enjoys painting and listening to music in her free time.

At the end of each year, around 600 people with liver disease on the UK transplant list are not transplanted and are still waiting for a liver – and the numbers are growing.

Fifteen to twenty percent of patients on the transplant list die or are removed each year whilst waiting for an organ. Unfortunately, there are simply not enough livers donated by people who have died for these patients.

The average waiting time for a liver transplant from someone who has died is approximately 137 days (4.5 months). For some people with common blood groups such as O, the wait can be 244 days (8 months) as more blood group O recipients are waiting for a transplant. For patients with end-stage liver disease, this is a long time. According to the NHS, Currently, three in 100 liver transplants performed in the UK are from living donors and the majority of these are for children.

Ms Afza’s mum says her daughter has been on the waiting list for over two years. She added: “We’re requesting a live liver donor because Khadijah has been on the list at St James’s Hospital for two years. The list used to be regional but now it is national. Patients who have little time to live are the highest priority.

“When Khadijah goes into the hospital, she gets higher on the list, but she responds well to medicine, recovers and her priority drops. Live donor transplants have a high rate of success which is why we are requesting one so she can live a better life.”

To be considered as a live donor, one must complete a donor health questionnaire, which can be found on Leeds Teaching Hospital’s website, here.

Criteria include being younger than 50, having a BMI below 30, being a non-smoker and fit and well. One must also be a compatible blood type to Khadijah, who is blood type O.

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