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Call to discuss organ donation in National Transplant Week

Published 07/09/2015
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IT is three years since Antony Chan had a kidney transplant, and he still feels grateful for his health every day.

The 34-year-old was born with kidney problems, which meant he had to live with diminished function for most of his life. During the last few years before his transplant, he was put on dialysis, so that a machine could do the job which his kidneys would normally have done.

But in 2012, he received a life-changing phone call – a donor had been found, and he could have a new kidney.

Now 34, he is married and he and his wife Liana are expecting their first child.

He said: “It’s changed my life. Three years ago, I was on death’s door. Now I’m married and we’re starting a family. These are things I never thought I would be able to do. It would never have happened for me if it wasn’t for this generous donor. They have enabled me to live my life now. I know I have been given an opportunity.”

Antony, who is from Duffield, is one of thousands of people who undergo transplant surgery each year, thanks to the generous decision made by people who sign the donor register.

But with 7,000 people on the transplant list, more potential donors are needed, in the hope they could save someone’s life when the time comes.

Next week (Monday, 7 September, until Sunday, 13 September) is National Transplant Week, and NHS Blood and Transplant is using it to call for everyone to sign up to the register and discuss their wishes with their families.

For someone like Antony, who receives treatment from Dr Richard Fluck at the Royal Derby Hospital, that discussion could be the difference between life and death.

Derby Teaching Hospitals NHS Foundation Trust, which runs the Royal Derby Hospital, does not perform transplants, but staff here deal with families making that vital decision when a loved one is dying.

Dr Marco Giovannelli, clinical lead on organ donation for the Trust, said: “Every day, three of these patients will die, as they have not been able to access the organ which they so desperately need, but it doesn’t have to be that way.

“Roughly a third of people in the UK are signed up to the organ donor register, but as only around one per cent of those will be in a position to donate to others, it means many more people are needed.

“We’re asking people to think seriously about signing up, and to have a conversation with their families to let them know your wishes.

“It’s never nice to think about the future in this way, but if your family is ever faced with making the decision over whether your organs should be donated, it will be a lot easier if they know what you would have wanted them to do.

“I would ask everyone to have that conversation and sign up if they are able to. Your decision could save lives.”

In 2014/15, more than 4,400 people underwent transplant surgery, thanks to 1,282 deceased donors and 1,092 living donors - a slight drop on the year before. NHS Blood and Transplant have attributed the drop to the low numbers of people who are signed up to the register, which remains at below 60 per cent of the population.

As only a small proportion of people signed up will be in a position to be a donor, it means the pool of potential donors is relatively small.

Sally Jonson, director of organ donation and transplantation for NHS Blood and Transplant, said: “We are truly grateful to the 1,282 deceased donors and to each of the 1,092 living donors who made transplants possible last year. Their donations allowed over 4,400 people to get the organ transplant they’ve been waiting for to save or vastly improve their lives.

“We have always known that because the opportunities to donate are so small, it is essential to increase the number of people who say yes to organ donation. If the pool of potential donors is reduced, then this is even more important. We understand families are expected to consider donation in their darkest hour, so we would remind everyone to tell those closest to you know if you want to donate your organs – and then record the decision on the NHS Organ Donor Register. Should the time come, your family will know you want to donate your organs to help save others.”

Although the call has been made for people from all backgrounds to sign up, there is a particular need for people from BAME communities.

Here in Derby, Kirit Mistry, organ donor community link worker for the BAME Community for Derby Teaching Hospitals NHS Foundation Trust, works with people from different backgrounds to encourage them to consider organ donation.

He is now seeking support from more people who would like to become community link workers.

He said: “We are trying to recruit more members to get the message out to people from different communities. Their role is to raise awareness of organ donation and to encourage people to sign up to the national organ donor register. The more people we have in this role, the more people we can support to consider organ donation.”

To find out more about the NHS Organ Donor Register visit www.organdonation.nhs.uk or call 0300 123 2323.

 

 

Case studies

 

Antony Chan, 34, from Duffield but now lives in London. He remains a patient at the Royal Derby Hospital.

 

Antony was born with a birth defect, which meant that the tubes which lead to his kidneys were blocked. As a child, he had stents fitted to widen the tubes, and although it did not provide him with full kidney function, it worked until he was 30. When his kidney function dropped to just 30 per cent of the norm, it became clear he would need a transplant.

 

He was put on peritoneal dialysis, which involves pumping fluid into the space inside your abdomen (tummy) to draw out waste products from the blood, while he awaited a transplant. He was able to work, but four times a day he had to change bags of fluid. He could not travel far, in case he had to dialyse.

 

He and his family underwent testing, and his mum Linda was found to be a match as a donor. The operation was all planned for March 15, 2012, but with three days to go, he had a call from the transplant committee to say a donor had been found.

 

He said: “After I had the surgery, life was completely different. Because I’ve always had less than one kidney, in terms of function, I have always been quite ill and quite weak. After I had the transplant, I felt completely different. When you’re on dialysis, it just keeps you going.  You’re surviving, but you don’t feel very well. It keeps you at about 50 per cent kidney function. After the transplant, I woke up and I felt well. I couldn’t remember what normal health felt like, and it was very strange for me. I used to be tired all the time. I didn’t realise how tired I had been. Now, instead of sleeping 12 hours a day,  I only needed six hours. I had all of this spare time.

 

“I felt 100 per cent better after the first day. It’s changed my life. Three years ago, I was on death’s door. Now I’m married and we’re starting a family. These are things I never thought I would be able to do. It would never have happened for me if it wasn’t for this generous donor. They have enabled me to live my life now. I know I have been given an opportunity.

 

“I think it’s nice to think that even though that person is gone, they can carry on. I feel like I live my life for myself and my donor.

 

“I think if people are able to donate their organs, they should, as one person can save many lives. If it was someone in your family who needed a transplant, you would want an organ to be available for them. If you’d be willing to accept one in that situation, I think you should be willing to donate.”

 

 

Liz Docker

 

For Liz and Steve Docker, the decision to donate their little boy’s organs was an easy one.

Simon was just nine when he died following a car crash in Ashbourne, but he had already spoken with his parents about the idea of organ donation.

“He thought it was great – the ultimate form of recycling,” Liz said.

Knowing that Simon would have wanted to donate his organs made it an easy decision for the grieving parents when the time came.

Liz, who works as a nurse, said: “I knew it was something he would have consented to, if he’d had the opportunity, so it was very straightforward to us.”

The family voiced their desires to doctors as Simon lay poorly at the Royal Derby Hospital. They knew staff would do everything they could to save their son, but if the worst happened, they did not want staff to be afraid to speak to them.

Sadly, treatment did not work, and Simon died from his injuries.

His lungs, kidneys, liver, corneas and a heart valve were donated to other people.

Seven people had their lives transformed because of Simon’s gift.

Several of the donor recipients were children, who were able to have normal lives for the first time because of their new organ.

Liz said: “I look at it as something positive coming out of the negative. However desperate the situation was for us, we felt we could make someone else’s situation better.

“We had almost 10 years of a happy and healthy child. A lot of people on the list have never been healthy. Your decision can transform that. That is something really powerful. At the time, even in the first couple of days, hearing that the transplant operations had gone well was a little bit of good news, when there was no good news. That sustained us for some time.”

It is almost 20 years since Simon died, and all of the people who received his organs have now sadly experienced problems – but in the time they worked, they gave life.

A little girl who received one of his kidneys was able to grow up and have a baby before the kidney stopped working – something she would never have been able to do without Simon’s help.

For Liz, Steve and their children, Ruth, Michael and Jenny, it is as if a little bit of Simon lives on.

“I kind of feel a bit like a granny,” Liz said.

The family has used their experience to encourage others to make their family aware of their wishes in relation to organ donation, so they know if the time comes when they have to make a decision.

 

Afzal Moghal

 

Every week, Afzal Moghal spends 16 hours hooked up to a dialysis machine at the Royal Derby Hospital.

The machine replicates the function of his kidneys, which have not worked since 1991, when he was diagnosed with renal failure.

At the time, he went onto the transplant list to await a kidney donation which would give him back his health. In December 1993, the call came to say a donor had been found.

For 16 years he enjoyed the gift of good health, but in 2009, his kidney failed, meaning he had to go back on dialysis.

His name has been returned to the transplant list, but he has been told there is very little chance that a donor will be found.

Afzal, 61, said: “I was called in twice last year in the space of a week, as they thought there might be a donor, but both times it could not go ahead. They’ve said I only have a ten per cent chance of getting a new kidney because of all the problems I have.”

Despite the news, he remains positive about his situation.

His wife Muna and family are supportive, but the dialysis impacts on every aspect of his daily life.

He said: “My life is very restricted because of dialysis, but when you’ve got a problem like this you just have to accept it and learn to live with it. You have to have a positive frame of mind. I don’t say I go for dialysis; I say I’m going to get my batteries charged.”

As a member of a minority ethnic community, Afzal’s chances of obtaining a new kidney are more remote, as there is a shortage of people from these backgrounds who donate in the UK.

People of South Asian origin are three times more likely to need an organ transplant, yet only one per cent of people on the organ donor register.

Many people are concerned that their religion prohibits them from donating organs.

However, Afzal, who is a Muslim, said he would encourage people not to be put off from signing the donor register.

He added: “There are two different thoughts in my religion. One says you can donate organs, and the other says you can’t. We’ve had a very good response from imams, who have said there is nothing stopping people from donating. It’s down to personal choice. I think it’s important to get that message across.

“After my transplant I asked our imam and they said there was nothing wrong with accepting the kidney. It saved my life. If you can accept an organ when you need one, why can’t you donate one after you die?”

Last Modified 07/09/2015