A Fallin man whose life has been transformed by organ donation has shared his story to mark Organ Donation Week (02 September – 09 September 2019).

Robert Ford, 24, received a liver transplant in October 2018, a year after his first transplant failed, giving him a future.  He has spoken of his gratitude to his donor, and their family, for saving his life after being diagnosed with autoimmune hemolytic anemia – a condition which caused his liver to fail and left his body unable to fight infection.

Robert managed on immunosuppressant drugs and steroids, until in 2015 he was diagnosed with autoimmune hepatitis, something he viewed at the time as meaning ‘just another tablet’. However by the new year, Robert noticed his health was getting progressively worse, with regular trips to Forth Valley Royal Hospital for intravenous antibiotics.

In September 2016, Robert was referred to the Royal Infirmary of Edinburgh for transplant assessment.  Robert, who was working as a sales assistant in Sainsbury’s, said: “I felt okay, but didn’t look okay. My eyes had gone yellow, the jaundice made me look like Homer Simpson and all my fat reserves had gone. When I was told a transplant was the only option, I knew it was a good thing, but was also pretty scared as it was the complete unknown.”

Robert was admitted to Forth Valley Royal Hospital the day after he was listed, with an infection that made him so ill that he was removed from the waiting list for over a month.  Robert said: “The antibiotics had stopped combating the infection, and panic set in as I was so ill. I was transferred to back to Edinburgh and was on the ward there when I got the call that a suitable liver had been found.”

In October 2016, Robert underwent was a split liver transplantation, with one section going to Robert and the other to a child – a procedure that carried more risk factors.  The surgery wasn’t straightforward, as Robert’s liver was so damaged it took a long time to remove, and a blood clot meant that Robert was woken up in ICU to see his parents and girlfriend Chloe, 21, before being taken back to theatre.

Following the second surgery, the decision was made to put Robert on the emergency list for another donor liver.

Robert said: “When I came round, the doctors were really honest with me. They said they didn’t know if the organ I’d been given was going to work. But the organ began to function and I started to feel better. My jaundice started to go, I was able to eat and start physio to get my strength back. Every check-up I was told things were going well.”

In September 2017 however, Robert was told that his liver was failing, and he was put back on the transplant waiting list.

Robert said: “At the time it felt like I was going back to square one. For the first six months, I’d started to feel better, I’d put on weight and muscle. And then everything just started to repeat itself, the constant visits to hospital, and not being able to work. They fitted a bile bag to me in a last ditch effort, and that worked for about three weeks but it was clear that the only way to make me better was another transplant.”

A year later, Robert got the call he’d been waiting for.

Robert said: “I was in complete shock. I phoned my mum and dad who took me to Edinburgh and Chloe came with me as I was taken to theatre. Things went so much better this time around, and other than an issue in January with the bile ducts attached to the organ, it’s been onwards and upwards.

“I feel really grateful for the gift I’ve been given. I don’t think you can thank a person enough for doing that for you. They made a decision during the worst time of their lives, and they’ll never know how many lives they’ve saved, but I’m one of them.

“I think moving to an opt-out system is a good thing, but equally I don’t think people should be demonised if donation isn’t something they want to do. I completely understand why some people can’t see through grief when asked about organ donation. It’s a personal choice at the end of the day.

“My health is fantastic compared to what I was putting up with. Work, holidays, making a home with Chloe, everything I should have been doing, I can now do. And I’ve my donor to thank for that.”

During Organ Donation Week, people are being encouraged to think about their organ and tissue donation decision and make it known.
From Autumn 2020, the law around organ and tissue donation is changing in Scotland, meaning that if people have not confirmed whether they want to be an organ donor, it may be assumed they’re willing to donate when they die.

People have a choice, and they can record their decision on the NHS Organ Donor Register at any time. Visit www.organdonationscotland.org