Losing her mum was devastating for Jessica Jones – but she drew comfort from knowing it helped save a child who had been given hours to live.
Maria Luke was aged just 51 when she had a brain haemorrhage at her Port Talbot home.
The family had already discussed the importance of organ donation. They agreed they would want their organs to be used to help other.
And that is exactly what happened after Maria’s death in 2011.
“The transplant coordinator came to our house about a month later to give us an update,” said Jessica.
“She confirmed my mum’s lungs had gone to a child, in Great Ormond Street Hospital in London, who was on the emergency transplant list. Apparently, you’re only on the list if you’ve got 72 hours or less to live.
“And her kidneys and liver went on to three other recipients.
“We weren’t told who they went to, as they can’t give out personal information, but four people have benefitted from my mum’s decision.
“We found that very comforting.”
Despite the passing of time, the memory will never fade for Jessica, who has told her story in support of NHS Blood and Transplant’s Organ Donation Week.
This starts today after being delayed because of the Queen’s passing.
Maria was preparing to host a Boxing Day party. Feeling unwell, she went to lie down, and, unfortunately, never woke up.
“She passed away in Princess of Wales Hospital in Bridgend – she had been diagnosed as braindead and had been kept on life-support,” said Jessica, who was aged 22 at the time.
“We met with the transplant coordinator, and she was brilliant. She went through the whole process, explaining what would happen next. It was obviously very difficult at the time, but she made it a lot easier.
“We had always talked about the importance of organ donation as a family. We all agreed that if any of us were placed in such a situation, we would like to have our organs go to help others.”
Having previously had that conversation made the process a lot easier.
Jessica said: “It was possibly the easiest decision we made when we were going through the most difficult time in our lives.”
In the UK someone dies every day in need of an organ, and there are almost 7,000 people currently on the active transplant waiting list.
There are currently more than 30 million people in the UK who have registered their organ donation decision on the NHS organ donor register, but this still only represents around 44% of the population.
Even though the law around organ donation has now changed to an ‘opt out’ system across England, Scotland and Wales, family members will still always be involved before organ donation goes ahead.
This means it is just as important as ever to register your decision to ensure your family knows what you want and support your decision.
Morriston Hospital and Swansea’s Guildhall and museum will both be lit up in pink this week to draw attention to this most important of subjects.
Anita Jonas (pictured above with colleague Kathryn Gooding), Swansea Bay’s clinical lead for organ donation, said: “The main message is to encourage people to have a conversation about organ donation because it’s something that can happen to us all.
“Also, you never know when you could be in a situation where you, or someone close to you, requires a transplant.
“There is nothing worse than having a loved one who is critically unwell and being told that there’s nothing more we can do for that person.
“Then the conversation about organ donation comes up – it’s quite a lot to think about at that time. If these conversations were held before hand, it makes it that little bit easier for the family.”
David Fellowes (pictured right), a retired golf course manager from Swansea, appreciates more than most how important it is to have a conversation around organ donation being the recipient of a new kidney 10 years ago.
The 75-year-old said: “From 2006 I did four years on dialysis in Morriston Hospital, followed by another two years at home.
“I’d work all day, then get to Morriston by 5pm, have four hours hooked up to a machine, then get home by 10pm and go to bed feeling quite drained. That was three times a week.
“For my last year, before the transplant, I had nocturnal dialysis, which saw me hook myself up before going to sleep, and while I was sleeping, I had dialysis.”
David was keen to be placed on the organ donation list but suffered a setback.
He said: “I wanted to get on the transplant list as soon as possible, for obvious reasons, but they found out by pure coincidence that I had prostate cancer as well. That had to be treated first before they put me on the list.”
Thankfully, he went on to get the all-clear and was added to the list.
He said: “I was on the list for around four years. It was frustrating. You obviously wanted to get the call but then when I had two false alarms – one of which reached me as I was driving to Cardiff, the other I had arrived there only to be told ‘sorry’ – it made it more frustrating.
“Thankfully, in July 2012, I had another call to say there was a kidney waiting for me in Cardiff and this time it was a case of third time lucky.
“My kidney was donated from Greater London, but I don’t know from whom.
“Initially the kidney didn’t wake up and, ironically, I had to have a couple of sessions of dialysis. Then, thankfully, the kidney kicked in.
“I was obviously elated. I wanted to get home and get on with my life.”
David, who is a trustee and volunteer with Popham Kidney Support, a charity based in Swansea helping kidney patients across Wales, reached a milestone this summer.
He said: “It was 10 years this July since I had my kidney, which is a landmark, but when you think of it, I was celebrating while, somewhere, other people weren’t celebrating. They were thinking of someone who had passed away. I just hope that they find comfort knowing that it helped other people to live.”
David, a former member of the Organ Donation Committee for Swansea Bay, had been made aware of families overruling their loved one’s decision.
He said: “It’s clearly a very emotional conversation but sometimes you would get the family saying, ‘he didn’t really mean it’, and turning it all around – that’s really heartbreaking. All those organs, which could have saved lives, were lost.
“My message would be, talk about it to make sure. Say to your family, ‘I’m ok with this’. Make that clear to the family. Hopefully, it could turn out to be a family decision and they would all become future donors.
“There was no presumed consent when I received my kidney. I’m so thankful that that family had clearly sat down before the donor passed away and that they said, ‘I want my organs and tissues to be donated.’ Because of that decision, here I am, 10 years later.’”
Jessica echoed those sentiments.
“My mum had made it very clear, if anything were to happen, what to do. She had heard stories about how valuable organ donation is, and my mother always said, ‘you won’t need them when you’re gone, so why would you want to keep them?’.”
“I feel that my mum would be proud and find comfort in knowing that her donations have gone on to help others in their time of need. She was all for helping other people.
“I also find comfort in knowing that her donations have given people a new lease of life.”
Encouraging others to make their wishes known, she said: “I would say that if you are no longer here then they could be a gift for someone else and help them go on to lead a much better life.
“There’s no reason for you not to do it.”
For more information on organ donation in Wales and to register your support visit https://gov.wales/organ-donation-guide
Lead image: Jessica and her mum, Maria (Image: Swansea Bay NHS)
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