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Blog posted by: Alex Taylor, 28 September 2022 – Categories: A great place to work, A Modern Civil Service, An Ambitious Civil Service.

To mark NHS Organ Donation Week (26 September to 2 October), civil servant Alex Taylor shares his journey and the challenges as he awaits a kidney transplant.

Living through a global pandemic has brought home how fragile and important our health can be. Organ disease and organ failure are some of the leading causes of long-term illness and death in the UK, directly affecting the lives of millions of people and their loved ones.

During NHS Organ Donation Week, the NHS and charities encourage people to register their wishes and talk with their loved ones about their organ donation decision.

My story

I didn’t know much about organ donation until it affected me personally. Two years ago, I was a healthy 27-year-old, when I began to feel queasy and increasingly ill over a period of weeks, until I was hospitalised. I was informed that my kidneys were irreversibly damaged as a result of a rare auto-immune condition named Goodpasture’s, and I later found out that my heart was also weakened.

Author, Alex Taylor

Living with organ failure is restrictive in numerous ways. I am dependent on dialysis, a machine to clean my blood, five days a week for five hours a session in order to live.

Constantly tired

Thankfully, I can do this at home, which has been a huge advantage, but it’s still exhausting. It is difficult to remember what it is like not to feel constantly tired. I follow a low potassium and low phosphate diet: no tomatoes, cheese, chocolate, coffee (hard for an addict like me!), and I can drink very little fluid. I can’t travel or walk far without feeling breathless.

Fortunately, there are things I can do to keep happy: I can walk short distances to the park and enjoy the fresh air, spend time with loved ones, and I work part-time in DLUHC with the Civil Service being an enormously supportive employer.

Click here for the full press release