A work event changes kidney patient Billie’s life
Billie had never met anyone with a kidney condition before she went along to a presentation given by Kidney Research UK to the Financial Ombudsman Service earlier this year.
Developing kidney failure after other medical complications
Billie, 35, an employee at the Ombudsman, developed kidney failure after complications from a stem cell transplant to combat leukaemia in 2016.
She was diagnosed three years ago, but because of the pandemic and her vulnerable medical situation, has always dialysed either in isolation or at home.
Billie says, “The charity presentation was a real turning point for me. It was one of those moments where life can change in an instant – it was a normal day, and I’d gone to work and just before the presentation started, someone on my team sent me a message telling me about it and asking me if I wanted to go along. And luckily I had the time available to watch it.”
The charity was at the Ombudsman to pitch to become the organisation’s charity of the year. There’s always a lot of competition, and kidney patient and Kidney Research UK supporter Aphria had volunteered to join the pitch to describe her experiences of dialysis and transplant.
Billie says, “A young girl in her early 20s stood up to speak, and it was the first time I’d ever heard someone with a kidney condition tell their story. It was incredibly emotional for me – to hear someone else who really understands, who really gets what you feel.
“I’ve been very open about my condition with my employer, and my colleagues recognise the impact it’s had on me. Now I’m really proud that my workplace is able to represent that and represent something so close to my heart.”
Importance of the partnership
The partnership has been particularly important to Billie because she had found it very difficult to come to terms with her kidney diagnosis, particularly after being diagnosed with leukaemia.
In 2019, Billie and the doctors treating her began to suspect that her kidneys had suffered damage after noticing a decline in her kidney function in her daily blood tests and a sudden weight gain from water retention, and within a short space of time tests confirmed she had kidney failure.
She says, “When I was diagnosed with leukaemia in September 2015 there was so much to read about it, so much input from doctors. But with my kidneys, the doctors came in while I was in hospital, on their normal ward round and told me I had kidney failure and would need dialysis to stay alive.
“That was that, there was very little build up or preparation. It was difficult to get my head around.”
Before she had leukaemia, Billie was a healthy and active young woman who did yoga and pilates, and enjoyed travelling to different countries with her husband Tony, 35. Now she has an ongoing medical condition called demyelinating polyneuropathy, as a consequence of the stem cell transplant in 2016, although her leukaemia is in remission.
She says, “My new stem cells attacked my nervous system. I couldn’t sit up, I couldn’t eat, I couldn’t do anything myself. I had to spend a long time in hospital relearning how to do everything. Then when I later found out I had kidney failure, it was devastating.”
“I do feel down about what’s happened to me. Dialysis is so physically and mentally draining, especially when it’s been so hot. People will just see you hooked up to a machine, but it’s the way it makes you feel, like everything is sucked out of you. Sleep is about recovery, I don’t feel rested the day afterwards.”
Now, Billie has to decide whether or not to do the pre-tests to see if she is eligible for a transplant. She says she’s put off making the decision as she is worried about the emotional impact of possibly finding out she won’t be able to have one.
She says, “It’s the fine balance between whether my quality of life will be better with a transplant, or will the side-effects of the immunosuppressants I’d have to take and the physical impact make things worse? With leukaemia, I’d had no choice, it was ‘Have these treatments or die’. But with this, the ball is in my court.
“I’m scared if I have the test they’ll say I can’t have the transplant, but I must. I can’t move on with my life until I do.”
Support from family and work
In the meantime, Billie says husband Tony has been a huge support, helping her with her home dialysis and liaising with her nursing team, while the team at the Financial Ombudsman have also been brilliant.
“Tony has been wonderful,” she says. “And work has been really accommodating. I work on a phased return basis, and there have been times when I’ve had to take time off to dialyse in hospital if for some reason I’ve been unable to do it at home.”
Billie can walk short distances but usually uses a wheelchair. She is proud that her colleagues joined the charity’s London Bridges Walk at the end of July.
At the moment, Billie volunteers for a number of charities and is hoping to start volunteering for Kidney Research UK.
“The work the charity does is all-important,” she says. “Kidney problems have such an impact. It affects so many lives, and people don’t view it as something terminal. They just think, ‘You can just do dialysis’.
“It can lose its significance. But when you live it every day, you realise it’s not a life that other people live. It’s very isolating.
“Kidney Research UK is helping to spread awareness that treatments can and should be improved.”