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‘I’ve tried to live my life for my donor as well as myself’

The partnership marked Organ Donation Week by speaking to patients about how organ donation has changed their life, and to the amazing staff who help along the journey.

Hosted by NHS Blood and Transplant, the week ran from 26 September to 2 October. It was a chance to encourage people to register their organ donation decision and discuss the issue with families. Almost 10,000 people in the UK are currently in need of a lifesaving transplant.

Our partners shared an array of heart-warming stories throughout the week – below are a selection.

Guy’s and St Thomas NHS Foundation Trust

Archie (pictured - on the left) was born with kidney issues, and from when he was just six months old received dialysis at home six days a week while transplant options were considered.ODW Archie

Dad Malcolm [pictured - on the right], 48, was found to be the best match. After a lot of preparations – including working out how to fit Malcolm’s large adult kidney into a small child – the donation and transplant took place at Guy’s Hospital.

Archie, 20, said:

I was too young to remember the transplant. Dad’s kidney is all I’ve known. I’ve grown up with it and it’s still working well.
It feels amazing to think dad did this for me. There’s not a lot I can do to thank him for this, apart from make sure to look after the kidney, which I do.

ODW Sarah JonesSarah Jones [pictured] had a kidney transplant 16 years ago and is now an active organ donation campaigner to honour the family and person whose kidney she received.

She set up the campaign group Share Your Wishes to encourage people to talk to friends and family about organ donation. Sarah says:

If you were to need an organ, would you take it? Then you should be prepared to give one too.
We have to make the conversation around organ donation the norm. Donation is life-changing for the recipient, their friends and their family.

She adds:

At the forefront of everything I do is the family of the person whose kidney I have. I don’t know and will never know them but they said yes that day. Without them I potentially wouldn’t be here now.
Since then, I’ve tried to live my life for my donor as well as myself.

Royal Brompton and Harefield hospitalsODW Louis

Louis [pictured], a 44-year-old father, received a double-lung transplant at Harefield Hospital at the start of the year. Although he developed a major infection after the surgery that put him in a two-week coma, Louis improved and is now back doing the things he loved before his health deteriorated. He is full of praise for the care he received.

I got to know everyone in the hospital, from the porters and cleaners to the doctors and nurses. It felt like a supportive family for me when I couldn’t be with my own and I will never forget any of them. They saved my life and have guided me back to where I am today.

Hilary Sharpe [pictured], a Senior Sister, Transplant Outpatients, was asked which part of her job is the most challenging. She says:ODW Hiliary Sharpe

COVID-19 was a significant challenge for the team. Besides managing the expectations of vulnerable patients during a difficult time, we had to mobilise our efforts to ensure patient care wasn’t compromised – for example, we set up virtual clinics to maintain adequate follow-up, maintained essential in-person appointments in a safe way, implemented the use of remote capillary blood testing, and hosted webinars to keep patients informed about developments and vaccinations.ODW Aisling McIntyre

Aisling McIntyre [pictured], a specialist nurse in organ donation, spoke about what motivates her to wake up and go to work. She says:

I’m constantly in awe of our donor families. I have so much admiration for their strength and generosity; their willingness to help save the lives of other people at the most tragic time in their lives is truly amazing.
Many donor families have fed back that donation provides comfort in an otherwise devastating situation. Each family is given the option to receive recipient outcome letters through donation services, which also provides comfort during the grieving process.

Evelina London Children’s Hospital

ODW Cruz BrownCruz Brown, eight, received a kidney transplant last December - this summer he competed at his first British Transplant Games, wining silver and bronze medals.

His mum Debbie says she is “incredibly grateful” to Evelina London.

The kidney transplant has completely transformed Cruz’s life. The games were our first ever holiday together. Before his transplant going on holiday or even taking short breaks was difficult because Cruz needed dialysis four times a week.
He is much more active now and can take part in sports without any issues. Seeing him enjoying himself, taking part in the events and winning medals was a really emotional moment for me. A year ago he was still on dialysis. It’s amazing seeing how far he has come.

OWD SimonKing’s College Hospital NHS Foundation Trust

Simon O’Donaghue, Head of Equality, Diversity and Inclusion (patients and communities), highlighted that it’s important people can donate their organs in line with their fundamental beliefs. He adds:

However, we know that family members can overturn people’s decisions if they are not sure what they want. Therefore, I think that communication with family members is key.
The NHS Organ Donation website has a helpful toolkit, which can help get the conversation started with loved ones.ODW Chris Gonde

Chris Gonde [pictured], a Senior Liver Transplant Scientist, says that the message is simple:

Make a difference, think about organ donation and save a life.

Visit the NHS Organ Donation website here to register to become an organ donor.