An Eden woman who has waited more than 600 days for a liver transplant is urging people to sign up as organ donors.
Jayne Pilkington, aged 43, found out she had a problem with her liver after continually feeling tired and itchy.
Since then, five organs have come up as potentially suitable, but none have progressed to transplant.
As recently as June, Jayne, of Newton Reigny, was about to go into theatre in a Newcastle hospital after an organ was found.
With a gown on and a cannula in, it was discovered at the 11th hour that the organ was unsuitable for her.
The average wait for a liver transplant is 65 days for adults and 77 for children — but Jayne has had to wait nearly 10 times as long.
Her situation is complicated by her blood type being B-negative; found in less than two per cent of the population.
She also contracted COVID last year when her late father was sent home from hospital having contracted it there.
Jayne said no-one had made him or the family aware, which also stretched her time on the waiting list.
Jayne once had a high-flying career in publishing, which regularly took her to London.
She said: “It’s one of the hardest things you ever have to get your head round. I would urge people to register as a donor as people think it’s never going to happen to them. You can’t go and buy an organ from a shop and there is only ever a limited number donated and not all of them are suitable.”
Algorithms are also used to match organs to patients, but this process considers Jayne as relatively “young”.
Older people, whose condition may be more serious or whose quality of life has been affected longer, are favoured instead.
And because the number of organs is so low, priority is given to those who urgently need them.
Jayne said: “The longer you wait, the more you are likely to deteriorate which can bring complications.”
Her message to Herald readers is to sign-up as an organ donor as this then goes on a patient’s NHS medical record and can prevent avoidable delays in future, with every hour crucial for those who need organs.
People can sign up to donate an organ at www.organdonation.nhs.uk/
A recent law change — in which people are now deemed to have automatically opted in to the organ donor register — does not mean that organs are readily available, she added.
Often, the delay can be because the decision to donate an organ then falls on relatives or next of kin, who may be too upset to confront it.
Jayne explained: “We are said to have an opt-in system now. If there isn’t an (organ) decision recorded on the patient’s record, the family or next of kin have to make what is an onerous decision at a very difficult time.”
Around 7,000 people need an organ at any one time. Jayne was just 35-years-old when she started feeling unwell.
Suffering from tiredness all time and itching, she went to her doctor and says she was not diagnosed at that stage.
However, she decided to do her own online research and found that her symptoms matched those of liver disease.
She says it was through her persistence in seeking a blood test and liver function test that it was revealed she had the auto-immune disease Primary biliary cholangitis, or PBC, which affects the liver.
Primary biliary cholangitis, sees the immune system, the body’s natural defence against infection and illness, mistakenly attack the bile ducts, affecting the liver.
It can be found in families with other auto-immune complaints, such as thyroid conditions. The condition gets worse over time and has left Jayne needing 21 tablets a day.
Being on the transplant list, she always has to stay within a three-hour drive time of the Newcastle Freeman Hospital.
Her eventual operation could last between six to 12 hours, and would then see her in Intensive Care for anything from a few hours to days to recover.
Jayne said: “The recovery time is also significant, but will be worth it. Post transplant I will still have PBC, and it can even come back and attack my new liver, so the organ they choose to give to me has to be as healthy as possible to mitigate this risk.
Jayne, who lives with her partner, Mark Lamond, has even lost a friend who was waiting for an organ transplant.
But she has also found support from regular Zoom meetings which involve patients and those working at the hospital, linking up with transplant co-ordinators and a charity, the British Liver Trust.
Pamela Healy, its chief executive, said: “Transplantation wouldn’t be possible without the generosity of organ donors and their families, but sadly, every year, hundreds of people die whilst waiting for a transplant because there aren’t enough livers available.
“Over 600 people are currently waiting for a liver transplant in the UK, which highlights the desperate need for more organ donors. We urge everyone who is registered as an organ donor to have a conversation with their loved ones to make them aware of their wishes.”
Organ Donation Week, taking place from Monday, 18th September until Sunday, 24th September, aims to raise awareness about the ongoing need for organ donations.
