Urging everyone to speak about organ donation with loved ones

Click to jump to:

• Lynn cared for others in life and beyond (Simon’s wife is an organ donor)
• A heart-to-heart can save a life (John received a life-saving heart transplant)
• Shane’s life-saving domino transplant (Shane recieved a heart from someone else who recieved a heart and lungs)

NCIC is marking Organ Donation week by encouraging everyone to have a conversation with your family about whether you want to be an organ donor or not. That way if the worst could happen you have left them certain.

Organ, eye and tissue donation saves and improves lives. It is hard to imagine how it would feel to be waiting on a ward for a heart donation for nine months but for some, this is their reality. We could save more lives if only we had the conversations.

The difference you could make to not one but many lives is incredible.

Sharon Uhrig became NCIC’s and UK’s first Donation Liaison Nurse for geographical outlying hospitals in October last year. Since appointed, Sharon has been working with teams across NCIC to educate on and embed the organ and tissue donation.

Sharon explains:

“One person donating after their death can provide life-saving transplants for up to 9 recipients; restore eyesight for up to 4 people; and prevent another 6 people from going blind. They can also transform lives of a further 40 people through transplanting heart valves, tendon, ligaments, bone or blood vessels and in many cases lives are saved after severe burns by having donated skin grafts. Donation after death is an incredible gift.”

From April 2021 to April 2022, North Cumbria Integrated Care NHS Foundation Trust have supported 4 organ donations, who combined donated 11 organs:

• 1 lung
• 4 kidneys
• 2 pancreas’
• 4 livers

Despite a law change in 20220 regarding consent for donation, the fact is that a family or a next of kin will always be consulted about organ donation.

Most families who don’t know the wishes of their loved ones will refuse donation whereas 9 in 10 families support organ donation going ahead if they knew what their loved one wanted.

You can record your decision on the NHS Organ Donor Register.

Sharon added: “It’s so important to raise awareness as we want everyone to make their own decisions about donation. The law changed in 2020, and people are considered to want donation if they have not registered an objection. That said, we would always discuss this with families to find out exactly what the last decision of the person was. If people have not discussed this with their loved ones, it makes things less certain at a difficult time. I would urge everyone to have a donation discussion with their nearest and dearest, so if the worst does happen you know what they would want you to do.”

Although it can be difficult, it is important that if the time comes, you leave them certain.

Please have the donation discussion, visit organdonation.nhs.uk for more information around donation and transplants.

Keep an eye out for buildings lit up pink this week to mark Organ Donation week.

Lynn cared for others in life and beyond

Discussing organ donation can seem like a difficult conversation to have but for one man from Carlisle it made all the difference when his wife died.

Lynn Smith was a mental health nurse in the NHS for 35 years. In 2017 she sadly died following a catastrophic stroke. When her husband Simon was asked about organ donation, he already knew the answer. They had spoken about donation some years previously, which meant Simon was certain of Lynn’s decision.

Simon kindly spoke to us to share his and Lynn’s story. Simon said:

“We both agreed that if the circumstances arose, organ donation would be the next step. I remember Lynn told me that she thought the one of us who survived would find it of help. At the time I hadn’t appreciated what that meant but I now realise that organ donation provides a structure which allows a more time to be with your partner at the end. There’s also a sense of purpose. Lynn sadly no longer had need of her organs but she was able to donate her organs to help others in real need. And I was not having to agree that life support should be turned off.

“During that time, 36 hours or more, you are with your partner and you see what is going on. The Intensive Care Unit (ICU) and specialist organ donation nurses provided the most compassionate care imaginable, looking after Lynn and me. I had time to be with Lynn and say my goodbyes and the whole process helped me come to terms with the fact that Lynn had died, including observing the brain stem tests, conducted with such care and dignity by the consultant anaesthetist, with the medical team in attendance.

“One of the specialist nurses who was working really long shift was clearly very busy organising potential recipients. But she found time to find out about Lynn and me, where we met and when we got married. She took our hand prints, adding our wedding date and the current date. And she plaited a lock of Lynn’s hair, giving it me for a keepsake.

“A couple of weeks later I received a letter from the organ donation team to say that Lynn had supported 4 people – 2 kidneys, a liver and lungs. After a year I received letters from 2 of the recipients.

“A woman in her 40s received a kidney and was able to be the mother to her daughter who was 11 at the time and wife to her husband and was back to full health, riding her horse and competing in eventing again.

“The second was a young woman who received Lynn’s liver. She was only 17 at the time and suffered acute liver failure. She too is now back to enjoying all the things she used to enjoy.”

Jacqueline Newby Specialist Organ Donation Nurse, NCIC said: “Lynn worked as a nurse for 35 years so it’s such a fitting legacy that she is also caring for others even after her death. She’s putting in a double shift.

”One of the biggest reasons that families say no to organ donation is because they say it takes too long but I’ve found in my experience with families who have gone through organ donation that they have really appreciated the extra time with their loved ones. We certainly know that Simon did.”

Simon added: “It was very helpful to go through organ donation and to have all the extra time after Lynn’s death to say my goodbyes and be with her. I was extremely touched with the care that was given to both of us. Having had the conversation about organ donation with Lynn some years before, it made it a very easy decision and I was certain of Lynn’s wishes.”

This week – organ donation week we urge everyone to please have the conversation, you can make huge difference if you leave them certain.

Register your decision on the Organ Donation Register.

A heart-to-heart can save a life

Three years ago, 63-year-old John Braidwood received a live-saving heart transplant. He has agreed to share his story with NCIC NHS FT to help raise awareness of the importance of having the conversation about whether or not you want to donate organs after you have died.

John said: “I am living proof that those conversations are necessary and well worth it. Because of a discussion that gave me a heart, I was able to attend my son’s wedding just nine months later.”

John, originally from Hamilton but now lives in Carlisle, has a wife, two children and two dogs. Always been sporty and even played Rugby for Scotland. However, John was born with a hereditary heart condition that causes the walls of the heart to thicken over time; sometimes so much it can cause the heart to stop.

John told us about his journey:

“At the age of 45, my condition deteriorated and after being a dentist at the Cumberland Infirmary for 36 years, I had to retire early 4 years ago.”

“After trying all sorts of pacemakers and such, I ended up at the freeman hospital and my only option was a heart transplant”

“I was in the freeman hospital for nine months continually, one day I asked the consultant how I was doing, and they said ‘we need to get you transplanted in soon, time is running out’.”

John had three near transplants before his actual transplant due to logistics and compatibility.

Jacqueline Newby, Specialist Organ Donation Nurse, NCIC said:

“We prepare for a heart to match, but we can never tell if it will be suitable until we perform further tests as part of the retrieval surgery, so we often stand down from retrieving a heart as we only take a heart for transplant when we know it will be transplanted.

“Heart transplants are challenging for a number of reasons firstly is they need to be retrieved from the donor and in the recipient within a four hour window. Only 20% of people who donate can give their hearts due to complications seen in patients with brain injuries, which means people often wait for a significant length of time before they are able to receive a new heart.

“This is the reason that John couldn’t leave the hospital for nine months. We needed him to be there, in place ready to receive his heart.

“COVID has meant much less people have been able to donate, which means our waiting lists are increasing and more people will die while waiting for a transplant.

It’s never been more important to have a conversation with your family or friends and share your donation decision.”

Being on the urgent list, meant John needed a heart within six months and he waited nine. Fourth time lucky, John received his heart.

John’s donor was a young man who had a ‘what if’ conversation with his mother. Although that can be a difficult discussion to have, it is powerful as in it has saved John’s life and others.

Grateful to his donor family, John said:

“The young man and a discussion has given me and my family a second chance to live life to the max. I am living proof that those conversations really do make a difference.

“I now play golf three times a week and just recently climbed Hellvelyn. My friends call me “Count I’ll Be” because I always say yes to everything. Every morning, I get up, draw the curtains, and say quietly to myself “Thank you.”

John’s daughter, who is a physio in Bermuda, and his son who lives in New York, both have the hereditary condition and are monitored by the freeman hospital through implanted devices.

Jacqueline Newby, Specialist Organ Donation Nurse: “Only 20% of the hearts donated are received by patients, the more people that donate would great increase the chances of someone else like John. Please have the conversation and leave your loved ones certain.”

Have a conversation with your loved ones about your wishes.

Shane’s life-saving domino transplant

Donor heart recipient, Shane, is urging everyone to have a conversation about organ donation – both in relation to giving and receiving organs:

“My transplant has given me my life back and a future to look forward to. I try to live my life to the full and not take the gift of life for granted, each day is a blessing.”

Shane Smith (28) has shared his story as a reminder of how life-changing organ donation can be. At the age of 14, Shane was diagnosed with a mild heart condition and within a year, his life depended on a heart transplant.

Shane told us:

“At the start of 2009 aged 14 I was diagnosed with mild left side dilated cardiomyopathy. I was playing football every Saturday for the local team.

“Later on in the year while I was helping to coach the younger team, I suffered from loss of vision on the right side coupled with a loss of feeling down the right side of my body. It turns out, I’d had a mini stroke, due to a quickly failing heart. I attended a routine check-up appointment at the Freeman hospital in Newcastle in the November at which I was told that my heart had deteriorated at an alarming rate, which had not been seen before. It was even too dangerous for me to leave the hospital. I thought to myself ‘how could this be, I was playing a football match at the weekend just gone and felt fine’. Looking back, I was extremely lucky to walk off the pitch alive that day.

“I was then assessed and placed on the transplant list to wait for a life-saving heart transplant. I wasn’t aware at the time how serious my condition was which in hindsight was a blessing, as I never considered the reality of not leaving hospital.

“After two months in hospital I was given the call, there was a potential match for a heart for me. It was a feeling I had never felt before or since and one that’s difficult to explain. A mixture of emotions; excitement, relief, fear coupled with the thought and sympathy for the family on the other side.”

It can be several months, or possibly years, before a donor heart of the right size and blood group becomes available. Many people are well enough to stay at home until a heart becomes available, although some people will need to remain in hospital.

“Unfortunately, this heart was not suitable. I finally got another two offers on consecutive days in January 2010, and the third being suitable. Following the transplant, I was told that it was a live donor. This is a process called a domino transplant, where a deceased donor gave heart and lungs to a live recipient and that recipient gave their heart to me. The first of its kind for approximately 20 years I believe.

“To this day I still think about the donor, how are they getting on? What are they doing? Are they still well? It’s the most selfless act someone can do to give life to another person especially one they have never met.

“I am now 12 years post-transplant. 12 years, which I would not have had without the kindness of another person. I am back to playing football three times a week. I achieved a first in a degree in waste management and decommissioning and currently work for Sellafield Ltd. The transplant has given me my life back and a future to look forward to. I try to live my life to the full and not take the gift of life for granted each day is a blessing.

“I think the important message for people to understand is what a difference organ donation can make to a number of lives from the recipient, the family and the friends. Organ donation is something that both my close family and I had never really considered or discussed before but now we consider it normal to discuss. Another way of thinking about it is “would you take an organ if you needed one?” It’s given me the chance to live and I will be forever grateful for the donor for their decision.

“Please have a conversation with your family and friends about your organ donation wishes.”

You can record your decision on the NHS Organ Donor Register.