Tag: organ donation

Dad’s Gift of Life: Father Donates Kidney to Save His Son

A loving dad has given his son an amazing second chance by donating his kidney to save him from an incurable disease.

James MacDonald, 57, gave his son the gift of life after Craig, 28, developed chronic kidney failure.

The disease had reduced Craig’s kidney function by a staggering 92% and his mum, dad, older sister and several extended family members stepped forward to save him from a future on dialysis.

James emerged as the most compatible match and the pair, from Livingston, West Lothian, underwent the lifesaving transplant operation at the Royal Infirmary of Edinburgh in February last year.

Now in time to celebrate World Kidney Day, Craig has made a full recovery, returned to work with his dad and the golfing buddies are closer than ever before.

James, a Manufacturer at a packaging company, said: “Craig and I are really close. We have worked together for many years, and I just wanted to give Craig his life back.

“I didn’t think twice about it and I think any father would want to do that for their child.”

Craig added: “I’m so thankful to my family, to my dad and to the transplant team for saving my life. The transplant experience has brought me and my dad even closer together.”

Craig’s journey with kidney issues began in childhood, but it wasn’t until a family holiday in 2021 that his symptoms became clearer. His mum noticed his ankles were swollen and insisted he see a doctor.

After visiting his GP, Craig was swiftly admitted to St John’s Hospital in Livingston with extremely high blood pressure as he was at risk of having a stroke.

Craig went on to be diagnosed with IgA nephropathyin November 2021 and was put on dialysis in October 2022. He said: “It was really scary being admitted to hospital so quickly and then being told that my kidney function was declining rapidly. I didn’t feel unwell which made it even more disconcerting.

“I felt way too young for this to happen and there was so much more I wanted to achieve in my life.”

James was identified as the optimal donor and in 2023, Craig and his dad underwent the lifesaving kidney transplant.

Craig’s mother, Carol, said: “I felt so helpless having my husband and my son in surgery. I was pacing up and down the hospital corridors just waiting to hear whether they were both okay.”

The operation was a success and within days, the transplant began making a visible difference to Craig.

James said: “He looked significantly healthier after the surgery – his face just lit up. “Before the operation, his kidneys were functioning at 8% and after one day post-surgery, his kidneys were up at 21%, it was amazing.

“Seeing him healthy and happy was the greatest reward any father could ask for.”

Since the operation, Craig has returned to work with his dad at the packaging company the pair go golfing regularly.

Craig said: “I’m now able to do what I want and I can finally lead a normal life. I’m just back from a golfing holiday with my dad and the experience has ignited an excitement within me for exploring the world more.

“I’ve been given a second chance and I want to enjoy every minute.”

Nina Kunkel-Howden, Live Donor Transplant Coordinator, NHS Lothian, said: “Craig’s journey is a powerful testament to the transformative impact of living kidney donation. Living donors really do change lives.

“We wish him and his family the very best.”

For details about organ donation, visit (opens a new window):

www.livingdonationscotland.org

Heartbroken mum’s plea: Discuss organ donation with loved ones

A mother who made the brave decision to save the lives of three other people and give another the gift of sight has urged more people to discuss organ donation with their families.

Debbie Young, 53, from Edinburgh, made the courageous decision to donate her daughter’s organs when she died two years ago.

Her daughter, Raechel Waterston was just six days away from her 21st birthday when she suffered a fatal seizure.

Debbie’s decision in the moments that followed saved and transformed the lives of four other people.

Now, as part of Organ and Tissue Donation Week, Debbie is encouraging others to decide which organs they would donate and speak to their loved ones about their decision.

Debbie, a support worker and mum of four, said: “I wish Raechel was here beside me every single day, but it’s a comfort that I could honour her love of helping others even at the end of her life.

“Raechel had learning difficulties and autism and she was sunshine in human form and she thought everyone was her best friend. She loved bowling, films, wearing costumes and interpretative dance. If everyone was like my daughter, the world would be an amazing place.”

Raechel was rushed to the Royal Infirmary of Edinburgh Hospital after the seizure, but the medical teams confirmed that there was no brain activity.

Despite facing the overwhelming loss of her daughter, Debbie bravely asked doctors whether Raechel could become an organ donor.

The specialist nurses in organ donation supported Raechel and her family while transplant teams scanned patient waiting lists across the country to find matching recipients and located three patients who were in desperate need of a transplant.

Raechel’s heart and kidneys saved three people’s lives and her eyes were given to another to help restore their sight. Her lungs were also donated to medical research.

Debbie said: “Raechel would usually sit on my bed while I was getting ready for work. She hadn’t come in which was unusual, so I went into her room and she was lying on the ground unresponsive and her lips and fingers had a blue tinge to them.

“Her favourite film character was Wednesday Addams, so my family and I chose to say goodbye to her on Wednesday at 10pm which was her bedtime. We wished her goodnight and told her we loved her like we usually did. I was the last one to leave the room and it was the hardest thing I ever had to do – to walk away while she was still breathing.”

Two years on, Debbie is still struggling to come to terms with the death of her daughter, but recently wrote a letter to all of Raechel’s organ recipients.

Debbie said: “I wrote a letter to tell them a little about my daughter and I warned them that they might start liking High School Musical because she was obsessed with it! I’ve heard from one recipient, and it’s been such a relief knowing that Raechel saved someone’s life.”

Debbie is urging others to consider what organs they would be happy to donate and to ensure that this decision is recorded on the organ donor register and shared with their family.

“I would really encourage everyone to register their organ donor selections online and to speak to their loved ones about this decision. If your death can help someone else to live, why wouldn’t you want to do that?

“My daughter’s life wasn’t a waste because she saved so many others and I think that’s an incredible feat.”

An NHS Lothian spokesperson said:“It is hugely important that people make the decision to sign up to the organ donor register and then discuss it with their families. Debbie knew right away that her daughter would want to make a difference in her death, just as she had throughout her whole life.

“Although Scotland now has an opt-out policy, it’s still really important to outline what organs you would be happy to donate on the organ donor register. You could help up to nine people if you decide to donate all your organs but having those conversations with your family is crucial.”

For details about organ donation, visit organdonationscotland.org

Edinburgh man encourages fellow Muslims to register as organ donors

An Edinburgh man who was inspired to become an organ donor is urging people of faith to consider giving others the ultimate gift.

Muhammad Munir, 55, is of the Muslim faith and, despite the difference of opinion on organ donation in the Islamic community, he feels very passionately about the topic.

Mr Munir said: “My religion teaches me that looking after yourself and other people is our number one priority, and my heart says that there is no religion on earth where you wouldn’t want to save someone’s life.”

Organ donation has been debated extensively in pre-modern and contemporary times and some still believe that organ donation is impermissible in the Muslim faith.

Mr Munir continued: “I am of the Islamic faith and there are still some Muslims who believe that you should not become an organ donor after death due to the lack of knowledge and awareness on permissibility of organ donation – we need to raise more awareness!

“In Islam, we pray five times a day. However, our faith states you should look after your health and your body first.”

Mr Munir added: “I’ve had many discussions within my community with people who disagree with my decision to become an organ donor. I try to provide them with logical, scientific information and signpost them to the updated information by the Muslim scholars, but I don’t push them too much as you can only debate with someone who’s open to changing their mind.”

Mr Munir is a Peer Educator volunteer with Kidney Research UK and has been volunteering with the Organ Donation project for the past 5 years. The project focuses on raising awareness and educating the South Asian (Sikh, Hindu and Muslim) ethnic minority communities on organ donation.

Mr Munir, who is partially sighted and works for the Royal National Institute of Blind People (RNIB), also felt that it was very important to make his family aware of his decision to become an organ donor.

NHS Lothian supports all initiatives to raise awareness of organ donation and Caroline Gallier, Specialist Nurse in Organ Donation, NHS Blood and Transplant, said: “Families play a key role in organ and tissue donation and if you die in circumstances where you could be an organ donor, a specialist nurse would check the NHS Organ Donor Register to see if you had signed up.

“They would also speak to your family to ask them about whether you had expressed any more recent views and whether your faith would place any restrictions on donation.

“So, whatever your decision, it’s important your family know what you want.”

If you want to donate after your death, the best way to ensure your family know what you want and honour your decision is to have a conversation with them about it and register as a donor.

You can also record on the register whether your faith/belief is important and should be considered as part of the donation discussion, and you can consult your faith leader for further information.

You can find out more about organ and tissue donation and register your decision online at www.organdonation.scot or by calling 0300 123 23 23.

If you would like to learn more about an Islamic perspective on Organ Donation, please visit the following website here.

Three brothers’ lives saved by kidney donors

Three brothers with a rare genetic kidney disorder have all now received life-saving kidney transplants within three years of each other, thanks to organ donors across the UK.

John, Bill and Robert Whiteford all suffer from autosomal dominant polycystic kidney disease (ADKPKD) – a genetic degenerative illness which sees kidney function gradually decrease to the point of failure, meaning all would have required ongoing dialysis.

Luckily, thanks to donors, the brothers all have a brand new lease of life, and a new kidney, with John Whiteford successfully receiving his transplant last week at the Queen Elizabeth University Hospital, following seven months of dialysis.  

Each brother received their kidney through separate routes – each with their own unique story – but all being reliant on donors.

Mr Marc Clancy, lead consultant for transplant surgery at NHSGGC, who also performed John’s transplant, said: “The three brothers highlight the different routes people can receive transplants and we’re delighted to have been part of the process for John and Bill, as well as John’s daughter Sonia’s kidney donation. Furthermore, it’s fantastic to see them all recovering, albeit at different stages, and we wish them well for the future.

“Across NHSGGC we’ve been fortunate in being able to maintain a full kidney transplant service across the West of Scotland Renal Transplant Centre. This means a total of 224 transplants have taken place since April 2020.

“Thanks to the new opt-in rules which came into effect earlier this year we expect the numbers of transplants to take place across the UK to increase upwards of 30% over the next 5 years. This is fantastic news for our patients, and despite the pandemic, we are in a strong position within NHSGGC and anticipate similar growth in figures within our own service.” 

Meet the brothers

John Whiteford – received a kidney through the Living Kidney Sharing Scheme

John, who was discharged earlier this week, received his transplant at the Queen Elizabeth University Hospital, thanks to his daughter Sonia who was not a match, but was happy to donate her kidney as part of the UK Living Kidney Sharing Scheme. The scheme means if a donor is unable to donate directly, as was the case here, they are registered in a national scheme which matches them up with other pairs throughout the UK. This means Sonia’s kidney helped save a life elsewhere, while another donor’s kidney was given to John.

The retired minister, who is married with four children, is looking forward to getting his life back on track, and especially to spending time back in Sweden where his wife is from. 

John said:  “I am massively thankful to everyone working in dialysis and in the transplant arena. The team at the QEUH was excellent throughout and the care has been second to none. 

“I couldn’t believe it when I was matched, it really is life changing news. The dialysis keeps me alive but I’m tethered to a machine three days per week and you’re energy levels are low. Transplant is the long-term solution and I’m incredibly thankful to my daughter Sonia, and to the UK Living Kidney Scheme.” 

Daughter and 38 year old mum of two, Sonia, said: “The Living Kidney Sharing scheme has allowed me to help my dad and that is a huge privilege and an amazing thing to be part of.

“I can already see him getting better and his kidney function is improving every day. There’s a real feeling of joy and relief at the same time, and while I was only discharged this week, I’m already feeling my energy levels returning. As a mum of two getting that back fully is essential! 

“The genetic condition which runs in our family means 50% of us will have kidney issues so we really are all in this together, and it’s inspiring to see how well programmes like the Living Kidney Sharing scheme work in practice.”

Bill Whiteford – received a kidney from a friend 

Retired BBC journalist Bill Whiteford is well on his way to recovery having received his kidney two weeks ago at the Queen Elizabeth University Hospital (07/08/21). Bill was lucky enough to have a friend who turned out to be a match.

Bill, who worked for the BBC for years, presenting the likes of Good Morning Scotland and BBC Drivetime, commented: “First and foremost I am grateful to my friend. It’s a massive decision to give up a kidney and I am humbled for his support, without which, I would inevitably still be on the waiting list and fast approaching the need for regular dialysis.

“I’d urge everyone to consider donating an organ – whether that’s through the living donor programmes or by having that important conversation with family to let them know your organ donation wishes in the event you pass away.”

Robert Whiteford – received his kidney from an altruistic donor through the Living Kidney Sharing Scheme

Robert, 67, was the first of the brothers to receive a kidney transplant. The retired vet who stays in Scone also received his kidney through the Living Kidney Sharing Scheme, with ex-wife Linda donating her kidney as part of the process. Luckily Robert was matched up in the first round of checks which meant he was able to avoid going on to dialysis.  Three years on and he remains extremely grateful to Linda and the altruistic donor he was matched with through the programme.

Robert said: “I started developing symptoms around 10 years ago, and following a scan it was confirmed that I had the condition. Following that, my kidney function gradually fell to 8% but luckily through the programme I was matched very quickly.

“I’m extremely thankful to Linda and the altruistic donor, who joined the Kidney Sharing programme and helped facilitated my transplant, and others.

“I would tell anyone who is considering donating to a friend or loved one, to seriously consider the programme – even if you’re not a match, by donating your kidney you can ensure your loved one is matched with someone else.”

Organ donation law change comes into effect today

Scottish organ donation law changes to an opt out system today (26 March 2021). This means that if you die in circumstances where you can donate, you will be considered to be a donor when you die, unless you have chosen to opt out or are in an excluded group.  

Your loved ones will still be consulted about your views to ensure that donation does not proceed if you would not have wanted it to. Organ and tissue donation remains a personal decision and you have a choice.

Read more.

Reality of kidney disease highlighted by transplant recipients for World Kidney Day

Two kidney transplant recipients have spoken about the reality of living with kidney disease ahead of World Kidney Day (Thursday 11 March 2021).

Fiona Davies, 39, from Airdrie, and Ross Young, 48, from East Calder, both diagnosed with Polycystic Kidney Disease (PKD), have shared their gratitude for the transplants that have given them their lives back, and the chance to see their children grow up.

Fiona and Ross have backed the campaign to raise awareness of the forthcoming organ and tissue opt out law, in the hope that it will get people thinking about their donation decision.

There are currently around 420 people in Scotland waiting on a kidney transplant, many of whom are on dialysis to keep their kidneys working. 

Ross was diagnosed with PKD in 2003, and has since found that his two sons, now 13 and 16, have the same hereditary condition.  His kidney function deteriorated to the point that he was listed for transplant in March 2010, and received his transplant in November 2010 after only ten weeks on dialysis.

Fiona was diagnosed with PKD as a teenager, which she successfully managed until the birth of her son James in 2012 impacted on her kidney function.  She reached end stage kidney failure in October 2016, and was listed for transplant in March 2017. Her transplant went ahead just three weeks after she was put on the waiting list.

Scotland’s opt out law, which will be introduced on 26 March, means that if people aged 16 and over haven’t recorded a decision about donation, they will be considered a possible donor if they die in circumstances in which they could donate.

People have a choice – to be a donor, or to opt out of donation – and the campaign is encouraging people to record their decision on the NHS Organ Donor Register, and share it with family.

Informing family is important, as under the new law, they will still be consulted to check what their loved ones latest views on donation were.  This is to ensure donation doesn’t proceed where the individual didn’t want it to.

Speaking about the impact kidney disease and her subsequent transplant had on her life, Fiona said: “Looking back, I had no idea how ill I actually was towards the end.  I was getting through life, but was constantly tired and had no concentration.  Motivating myself to do things became harder and harder. 

“I wanted to hold off dialysis until my son started school, but could start to feel things dipping.  I had restless legs and couldn’t sit for any length of time, I felt sick when I ate and was in bed for 7.30pm every night.

“I got the call just minutes after my son’s fifth birthday party and the transplant surgery all went to plan.  I was home six days later and things just got better and better.  It’s quite unbelievable the change it’s made to my life and I have my donor to thank for that.

“I am very pleased that Scotland is moving to an opt out system. You don’t truly understand the impact of organ donations until your life is touched by it and I hope that the move will help increase the number of viable organs available and help those waiting.  Because of organ donation, my son has his mum back, and I have a future.”

Talking about the law change to an opt out system from 26 March, Ross said: “I wouldn’t say life on dialysis was easy, but I knew it was keeping me well, and then the transplant changed everything.

“I have always felt strongly about the law changing to an opt out system, and I even approached the Scottish Parliament, which is when I learnt the wheels were already in motion for the Bill. 

“I am really pleased to see the law finally coming into action. It’s the simplest way to make a difference while making sure everyone knows they’ve got a choice. If you don’t want to be a donor you just have to opt out.

“Knowing that both my sons have the same condition as me, I’m grateful for developments like the law changing before either of them finds themselves in the position I did.”

For more about the law change, and to record your donation decision, visit organdonationscotland.org or call 0300 303 2094.

Kidney Care UK is hosting a webinar tomorrow (Thursday), which will involve a range of speakers and experts answering questions around living well with kidney disease, kidney health, and the forthcoming organ and tissue donation law change in Scotland.

The event is open to anyone affected by kidney disease, and you can book your place here: www.kidneycareuk.org/scotland-webinar

Organ Donation: It’s good to talk!

Telling family is the top way Scots make organ decision known

Ahead of Scotland’s move to an opt out system of organ and tissue donation, new research has revealed telling family is the top way people have made their donation decision known. 

Almost three quarters (72 per cent) of people who have made their decision have told family what they’d like to happen, followed by over half (54 per cent) recording it on the NHS Organ Donor Register, and 27 per cent sharing it with friends.

The research also reveals one in ten (11 per cent) haven’t yet made their decision known to others – and today (17 December 2020) Public Health Minister Joe FitzPatrick outlined the importance of people recording their decision on the NHS Organ Donor Register and making family aware of their latest views on donation. 

The law changes to an opt out system from 26 March 2021, which means that if people aged 16 and over have not recorded a decision about donation, they will be considered as a possible donor when they die.

Under the new law, people can choose to be a donor, or opt out of donation, however sharing that decision with family remains vital, as family members will still be consulted to check what a loved ones latest views on donation were.  This is to ensure donation doesn’t proceed where it is against a person’s wishes. 

Of those surveyed who hadn’t shared their decision with family – over a third (38 per cent) said it was because they hadn’t got round to it yet, and almost a quarter (22 per cent) said they didn’t feel the need to raise it as it was a personal matter.

The Scottish Government is set to launch a national advertising campaign early next year to highlight what the change of law means, and the options people have, ahead of the March law change date.

Public Health Minister Joe FitzPatrick said: “With the introduction of Scotland’s opt out legislation on the horizon, we’re encouraging people to make time to record their donation decision on the NHS Organ Donor Register, and share it with family. 

“Under the new law, family will always be asked about a loved one’s latest views on donation. We know organ donation isn’t something that comes up in everyday conversation but making a point of speaking about what you’d want to happen, means your family will be able to honour it.

“Everyone has a choice and regardless of whether you decide to be a donor, or opt out of donation, making that decision known is vital.”

For more about the law change, or to opt out, visit organdonationscotland.org or call 0300 123 123.

Organ Donation: it’s time to talk

A woman who gave her mother a second chance at life by donating her kidney has spoken of the importance of people within black, Asian and other minority ethnic communities discussing organ donation ahead of World Kidney Day (12 March 2020).

Syma Shahzad, 40, who donated to mum Anees Haq in 2008, shared how she was challenged about her decision due to conflicting beliefs and knowledge within her community, and encouraged people to think about what they would want to happen and discuss it with family.

Syma, who works as a pharmacist in Glasgow, added her support to the awareness drive ahead of World Kidney Day, as statistics show the proportion of patients from minority ethnic communities in Scotland on transplant waiting lists has gradually increased over the past two years.

In March 2020, 10.5 per cent of those on the active waiting lists for a transplant from a deceased donor were recorded as being from a minority ethnic group, compared to 9.2 per cent in March 2018.

Statistics show that in the last five years, around half as many families of minority ethnic eligible donors supported organ donation after their loved one’s death, compared with the families of white eligible donors.

People from black and Asian communities are more likely to develop conditions such as high blood pressure, diabetes and certain forms of hepatitis than white people, which increases the likelihood of them needing a transplant1.

A kidney transplant is more successful if the donor and recipient share the same ethnicity.

Worried about the impact of dialysis on her mother’s life after she was diagnosed with chronic kidney disease in 2007, Syma raised the possibility of her donating her kidney.

A healthy person can lead a completely normal life with one kidney, and a kidney from a living donor generally offers the best outcomes for patients living with kidney failure who need a transplant.

Syma said: “From the outset, our consultant at the Glasgow Royal Infirmary was fabulous. He helped us progress everything as quickly as possible so we could make sure the transplant went ahead before my mum had to start dialysis. I had the first tests in March 2008, and successfully donated my kidney to her in the October of that year.

“Being Muslim, there’s a lot of stigma attached to organ donation. I believe I wasn’t doing anything to put myself in danger, I was simply helping give my mother a better quality of life. For me that was the ultimate decider.

“My belief is that whatever your time is destined to be, your time will be; but whatever you can do to improve that quality of life is essential.

“Within our community, there are so many challenges around mindset and conflicting religious knowledge. I was very headstrong and wouldn’t let anyone dissuade me from doing this. With Asian people being at a higher risk of diabetes, and the associated kidney problems, I would love to see more people considering donation.

“I would encourage anyone who’s unsure about their stance on organ donation to sit down and consider what would happen if it was someone in your family who needed a transplant. Having been through it with my mother, if I could I’d do the same for anyone else in that situation.”

From Autumn 2020, the law around organ and tissue donation after death is set to change to an opt-out system.  This means that if people aged 16 and over have not recorded a decision about donation, they will be considered as a possible donor when they die, unless they are in one of the excluded groups.

Jen Lumsdaine, Lead Nurse for Living Donation Scotland said: “Patients from black and minority ethnic backgrounds who need a kidney transplant tend to wait longer due to a shortage of donors.

“As Syma’s story illustrates, living donation can ensure a better outcome for the patient, and dramatically reduce the time a loved one has to spend on dialysis.

“Choosing to donate a kidney remains an exceptional gift, and living donation will continue to be vital part of continuing to improve transplant numbers when opt-out legislation is introduced, so more lives can be saved and transformed.”

To find out more about living donation visit livingdonationscotland.org