Organ Donation: Emotional Video Diary Reveals The Tough Reality Of Waiting For A Transplant

'You have to live your life, every single day, as if nothing is wrong.'

A woman in need of a liver transplant has shared an emotional video diary of her time on the waiting list, in the hope it’ll encourage others to donate.

Michelle Russell, 36, was diagnosed with cirrhosis of the liver, portal vein thrombosis and a rare form of blood cancer in 2013, meaning her dream career in the Royal Navy was cut short.

“I find it really hard to talk about because I tried so hard to join the Navy and it was the best thing I ever did,” she revealed in an exclusive video diary for HuffPost UK. “I never wanted to leave. The day they medically discharged me was really hard.”

Russell, from Hampshire, experienced symptoms such as stomach ache, vomiting blood and passing black, tarry stools prior to her diagnosis.

She said her life turned upside down after doctors revealed what was wrong.

The 36-year-old spent two weeks trying to figure out how she’d make up for all the things she hadn’t done and how she was going to prepare herself, as well as her family, for the worst. Part of this process involved researching funerals and trying to figure out how she’d stump up £8,500 to pay for her own, should that day come.

As of August 2017, when she filmed her diary, Russell had been on the transplant waiting list for around 10 months. “I never expected to be on that list,” she said. “I was told that I had 18 months to two years before I would get my call.

“You have to live your life, every single day, as if nothing is wrong. But you have your phone there, just in case it rings.”

The conditions affect her in multiple ways. For starters, Russell finds it very difficult to sleep at night, meaning she has to nap throughout the day.

“Sometimes I might look yellow, sometimes my eyes turn yellow, sometimes I might bleed from my stomach - I can’t see that but I can feel it, it feels like a horrible stomach ache,” she explained.

Her appetite has suffered and she hasn’t touched alcohol since October 2013. She also has to swallow a cocktail of pills every day.

Russell’s liver is unable to remove toxins from her body, which can prove dangerous. “The toxins that my liver doesn’t get rid of can float around my body, get into my brain and cause confusion,” she explained.

“It can cause me to forget words, it could cause me to think something is happening when it’s not (hallucinations) - in severe cases you could be driving along the road, come to the traffic lights, they have a red light on for stop, but you see a green light, so you go.”

In very serious cases, patients can end up in a coma.

Michelle Russell has bravely opened up about her experiences for Organ Donation Week.
HuffPost UK
Michelle Russell has bravely opened up about her experiences for Organ Donation Week.

Russell says her diagnosis has had a huge impact on her, but it’s the impact on her family she really worries about.

“My boyfriend and step-daughter live in Belgium and I wish I could take it all away from them, I wish I could have them not deal with any of this,” she said.

“I would say that out of everything... that’s the toughest part.”

She credits her family for helping her through the tough times, especially her two sisters, her mum and her boyfriend Steve. But she also finds it hard to let them see that she’s not well.

Now, all Russell can do is wait until she receives the life-changing call to say an organ has become available.

“You feel as though it’ll never, ever come,” she explained. “I feel as though my name’s in a hat and I’ve just got to wait for it to be pulled out.”

Every day is a waiting game and every day, the same questions cross her mind.

“What if the liver that they get for me isn’t a match?” she said. “What if after two years I haven’t got a match? What if I deteriorate so badly that I end up on the emergency list? What if I end up on that emergency list and the liver doesn’t come through? What if I die waiting?”

There are currently around 6,500 people waiting on the transplant list and Russell is just one of them. To coincide with Organ Donation Week (4-10 September) she has urged people to sign up to the donor register.

“The best thing you could ever do in your life is give somebody the chance of living,” she said.

“I’ll never forget the person who donates that gift to me. Never.”