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'Every morning you get up praying that today will be the day the phone call comes'
ANN Hogg hasn't known really good health for 20 years. The former retail manageress and window dresser started to experience pains in her bones and particularly her legs when she was about 40.
Over the following decade, her deteriorating condition meant the removal of womb, tonsils, appendix and gall bladder.
Doctors arrived at one diagnosis, but then something else would happen.
A definite explanation of her more recent symptoms came five years ago when tests revealed that Ann had a condition of the liver called primary biliary cirrhosis.
"The consultant said 'you're either drinking a couple of bottles of whisky a day or you're very unlucky'," says Ann, who's now 59 and lives in Deepcar, Sheffield.
Primary biliary cirrhosis (PBC) is a condition (thought to be an auto-immune disease) that slowly damages the bile ducts in the liver. It is rare – affecting one in 1,000 of the population and nine out of 10 sufferers are women.
The cause is unknown, but the illness restricts the flow of bile, which builds up and damages the organ's cells. Common early symptoms are itching, tiredness and discomfort above the liver area. Medicines to ease symptoms and slow the progression of PBC may be used, but a liver transplant may be needed if the liver becomes severely damaged.
As her illness progressed, Ann became too tired and and weak to work. She is often unable to walk more than a few yards at once, and needs to sleep much of the day. The condition has progressively affected the rest of her body.
"Your body shuts down – there's fluid retention and bloating, osteoporosis (brittle bones) and fluid on my lungs. I can't seem to keep weight on because my digestive system doesn't work properly now, so I live on supplements. My memory and concentration are terrible too," says Ann.
"I went quite quickly from stage one to stage four of the disease and a year ago was put on the transplant list. There is no cure for the state of my liver, so the only hope is a new one.
"You hope against hope that the phone call will come, even though you know that in order to get what you need someone else has had to die. "
The physical and emotional toll of a long illness and the limbo of waiting for a transplant are enormous for both patient and family. "I was married for nearly 40 years but my husband left two-and-a-half years ago because he couldn't cope with my illness. It is difficult to live with, as I could barely go out or do any of the things he wanted to do."
Ann has a new partner now, a son nearby and a daughter in Australia whose three children she is not sure she will ever see again. "At the moment I either sleep or fill my time with knitting, in between going to the hospital between one and three times a week.
"Every day you get up praying that today will be the day, and as time goes on I could get into a state where I will not be well enough to have the operation. I know you can't have everything in this life, but
to have just 10 more years would be lovely. I feel helpless but can't just lie back and accept this." One of Ann's sisters has recently been diagnosed with PBC.
Elizabeth Walden, who's 37 and a mother of two girls of 11 and 12, is going through the wear and tear of being on the transplant list for a second time.
The part-time doctor's receptionist started suffering from type one diabetes 10 years old. Before and during her second pregnancy her health began to fail slowly. Eventually she experienced diabetes-related kidney failure, and opted for four-times-daily dialysis treatment at home given via a tube straight into her abdomen, while waiting for a kidney and pancreas transplant.
"I was so lucky that I was only on dialysis for about seven months when donor organs became available, although sadly it was on the same day that my mother died," says Elizabeth, who lives in Leeds.
"The operation was successful, but a clot in the pancreas meant it stopped working after a couple of days. At the moment I have an insulin pump keeping me alive, but there have been a lot of problems – my eyesight is going, I can't feel my feet, and the instability of my diabetes means the lovely new kidney is under threat.
"The only real course of action is to wait for another pancreas, and in the meantime I'm asleep more than I'm awake."
Elizabeth knows she was very fortunate to get the gift of donor organs once and experience the immediate resurgence of energy and hope they brought. Being back on the list is tough. She feels very strongly that if you know you would accept a donor organ – and research shows that most people would – you should also be willing to give your organs.
"I'm going to find out what I am eligible to give, even in spite of my illness. Many families discuss organ transplant, what it means and whether they would do it, but so many don't go that step further and actually register.
"If someone actually goes ahead and gives their details to the register then, should the situation ever arise that their organs could be used, the decision to give consent is made easier for their family.
"I know it is a difficult time for a family, if they've been told their loved one is dead or beyond saving, but they should be proud that organ donation was what that person wanted."
Although 96 per cent of British people support organ donation, the gap between that overwhelming majority and the 27 per cent minority actually on the Organ Donor Register (ODR) is perhaps explained by many people feeling that they themselves will never be in the situation of actually needing an organ transplant, says transplant co-ordinator Rachel Wiseman, who's based in Wakefield.
This disconnect between willingness to give and the possibility of needing to receive means there's still a sizeable education job to be done, which is why UK Blood and Transplant recently launched its first multimedia campaign. Research shows that 45 per cent of people, though willing, simply haven't got around to signing up.
"Lack of understanding of what donation involves may also be a factor," says Ms Wiseman. "To be eligible for their organs to be used they must either be in intensive care and declared dead via brain stem tests or at the point where no further treatment can be given and they are likely to die very soon.
"However, anyone who dies in hospital or in the community can still donate within 48 hours. While there's a huge need for solid organs, other possible donations include skin,
corneas, bone and cartilage. Three people a day die while they're on the list, and that list of more than 10,000 people is growing every week.
"I'd say to anyone who's ever talked about being a donor: please don't just talk about it, join the register. And to those who haven't thought about it or discussed it with their family, please do."
HOW YOU CAN JOIN DONOR LIST
Anyone can register on the Organ Donor Register (ODR). Age is not a barrier to being an organ or tissue donor and neither are most medical conditions.
People in their 70s and 80s have become donors and saved many lives.
The NHS ODR records the details of people who have registered their wish to donate organs and/or tissue after their death for transplantation.
Information is used only by authorised medical staff to establish whether a person wanted to donate, and families are still consulted about their loved one's wishes.
Last year, 3,515 organ transplants were carried out in the UK thanks to the generosity of 1,853 donors.
To join the ODR go to www.organdonation.nhs.co.
uk, call 0300 123 2323 or text SAVE to 84118.
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Saturday 26 May 2012
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