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@ThurrockCCG: Mother gives gift of life in daughter’s memory

08 Sep @ThurrockCCG: Mother gives gift of life in daughter’s memory

A mother whose daughter died while waiting for a double organ transplant is preparing to give the gift of life to a young man who has kidney failure.

Natalie Carroll died at the age of 38 on New Year’s Day in 2014. She had complex health problems due to type 1 diabetes, and needed a kidney and pancreas transplant. She had regularly attended the renal unit in Basildon University Hospital for dialysis, where she and her mother Pat became close to many other patients and staff.

Since Natalie passed away, Pat, 63, has devoted herself to raising awareness of the importance of organ donation, and has spoken to MPs in the Houses of Parliament in her campaign for a change in the law to make donation an opt-out choice.

Now the bereaved mother, from South Ockendon, is donating a kidney to 22-year-old Joe Carmona, who she met two years ago on an outing for Basildon Hospital renal patients and relatives.

Pat said: “Naturally I wanted to give Natalie my kidney but it was not possible because she also needed a pancreas at the same time.

“All the time she was ill she never complained; she was always upbeat, asking other renal patients how they were and singing with them. She was an organ donor and I am too, and I also tried to donate a kidney to a friend of hers on the renal unit. I was not a suitable match but happily the young woman has now received a transplant.”

After the patients’ day trip, Pat met Joe and his mother Linda again when she was doing a 60 mile sponsored walk to raise money for the Organ Donation campaign. Linda joined her for part of the walk, and Joe met them at the top of the hill.

Pat said: “I knew I wanted to try and help Joe, and asked one of the renal nurses at Basildon Hospital to ask Linda how she would feel about it.”

Linda takes up the story: “When Fiona told me about Pat’s offer I was very taken aback; I thought at first I should take it with a pinch of salt and not get my hopes up. But when we realised she was serious it was amazing. She came from nowhere when we were not expecting a donor.”

It was discovered that Joe had kidney failure in 2012. Linda tried to be a donor for him, but tests showed she has a kidney impairment. Her husband Jean donated a kidney to his son that year, but sadly the transplant was not successful. The couple are both on the organ donor register.

Early this year, Pat and Joe were tested and found to be a very good match. Pat has since had extensive health tests, including renal function and lung capacity, and it is hoped that the transplant will take place next month (October).

Joe, who has a learning disability, has to dialyse three to four times a week, sometimes at home and sometimes in Basildon Hospital. Like Natalie, he has a very positive outlook on life, and talks enthusiastically about his many interests, including sport, music, jet planes, woodwork, fishing and his two cats, Felix and Cocoa. He played five-a-side football for his college team before his illness made him too tired.

Joe and Pat have pledged to take part together in the British Transplant Games when he is better. He said: “I am very happy that she chose me.”

Karen Harford and Naomi Rumbold specialist organ donation nurses

Karen Harford and Naomi Rumbold, specialist organ donation nurses

Every day across the UK around three people die, who could have benefited from a transplant, because there aren’t enough organ donors. A further 6,500 are currently on the waiting list. And although research shows that 80% of us believe organ donation is important, four out of 10 people who are willing to be organ donors haven’t got round to joining the NHS Organ Donor register.

Organ Donation Week runs from 5 to 11 September 2016. This year’s theme is ‘Turn an end into a beginning’ which will highlight how people can give someone the chance of a new beginning by becoming an organ donor.

Many families faced with the possibility of donating a relative’s organs, do not know what their loved one wanted and have to make a decision on their behalf.

The campaign, run by NHS Blood and Transport (NHSBT), aims to encourage people to start a conversation about organ donation – with their families, friends or colleagues – and to ensure their relatives know their decision.

Naomi Rumbold and Karen Harford are specialist organ donation nurses who work within the Eastern region of NHSBT. They are part of a team that provides 24/7 cover for families and hospitals, giving information and support on organ donation from deceased patients. Most organ donors are patients who die as a result of brain injury or multi-organ failure and who are being cared for in the intensive care units in the hospital.

Naomi and Karen work closely with the intensive care units, and any patient who fulfils criteria for being a potential donor will be referred to them.

Naomi said: “We believe every family should be given the option to consider whether their loved one would have wanted to help others through the gift of organ donation. We explain everything about organ donation, answer their questions, support them, and give them time to talk about their loved ones. It is very humbling and always amazes us to see how families can think of others at a time where they are amidst such sadness.

“It can be a difficult conversation to have, but for the families who decide it is what their loved one would want, the feedback we get is that they find it a comfort to know they did not die in vain.”

The families of donors continue to be supported through their grief by the specialist nurses and by organisations and charities. The families are told when someone has received the gift of donation, but the recipients are not identified unless both parties agree, usually after a few years.

Karen added: “Although we see great sadness, our work is very rewarding. The families of donors often tell us what a comfort it is to know their relative has saved or improved the lives of others.”

Kidneys are the most common organ to be donated by a living person – about half of all kidney transplants take place thanks to living donors – because a healthy person can lead a normal life with only one kidney.

Living organ donation usually involves one family member donating to another, but some people donate kidneys as an act of personal generosity, as in the case of Pat Carroll.

A specialist organ donation nurse and Pat Carroll will be at an information stand in main reception, Basildon University Hospital, on Tuesday 6 September, to answer questions and give information about organ donation.

To register as a donor, or find out more, visit: www.organdonation.nhs.uk/odw