Organ Donation Week: Hayley's Story

This week is Organ Donation Week, a week-long campaign that takes place every year, with the aim of raising awareness about the ongoing need for organ donors. The more people that understand the need for and importance of organ donation, the more people who register their decision to become organ donors after they die, and the more lives that can be saved.

In recognition of this, we have a special two-part blog to share with you. Today is the second instalment and we will hear from Hayley Cole. Hayley is a Macmillan specialist palliative care practice educator /specialist nurse, in the end of life and specialist palliative care team at Northampton General Hospital.

In 2019, Hayley became a living donor. This is Hayley's story.

Becoming a living donor

By Hayley Cole

My sister Tasha had a heart and lung transplant in 2001. Her drugs, whilst stopping her rejecting those two major organs, over the years also damaged her kidneys. We knew that at some point a kidney transplant would be required, as we saw her kidney function deteriorate. She was becoming less mobile and needing more help on a day-to-day basis. Tasha eventually had peritoneal dialysis for five months which she managed amazingly at home, where she lives with mum and dad.

In the background, before dialysis had even started, mum and dad started having discussions with the medical team about kidney donation. However, mum had previously had breast cancer and so was told from the beginning that she couldn’t be a candidate. Dad started the tests but was told pretty much straight away that his own renal function wasn’t good enough to donate either. He was devastated but his own health had to also be a major consideration.

It felt only natural then to begin to think about offering my own kidney. Over the course of many, many, many months, I had kidney function tests, CT (computerised tomography) scans, x-rays, 24 hour blood pressure monitoring, what felt like a thousand blood tests... and eventually I was I was told I could donate to my sister.

Many people have said to me that this must have been an easy decision – to be able to do something so special to give my sister a better quality of life. However, I have two children. I have a partner and his two children to think about. I am a nurse in a full-time job that I absolutely love. I had never had an operation and to consider putting yourself, as a healthy mum, under the surgeon’s knife, did need some serious consideration. It certainly wasn’t an easy decision. I wanted to help Tasha, of course, but I needed to make sure that it was the right thing to do for all of us. But after discussion with my friends and loved ones, I decided that actually there was only one thing I could do – donate.

On July 25th 2019 my kidney was given to Tasha.

On the day after the operation, Tasha was healthier than me for the first time in our lives. She walked round to see me in our Leicester General Hospital ward where I was hooked up to drains and pain relief. She had gone from having hardly any kidney function at all to having a healthy kidney working well… and she looked fantastic. I knew then that I had made the right decision (not that I said that when I first came round after the operation because it really, really hurt!!)

After nearly a week I came home, and Tasha came home a couple of days after me. I had 12 weeks off work and returned on a phased return basis. It took quite a few months to feel 100% with tiredness being my main issue.

However, four years later I can honestly say that this is one of the best things I have ever done. Tasha continues to have regular blood tests and hospital appointments, and it certainly hasn’t been smooth sailing for her. The lifespan of this kidney is completely unknown, mainly because she still needs to take medication to stop her from rejecting her heart and lungs, which the kidney doesn’t particularly like. But she has a fantastic quality of life, enjoying walking with mum and dad, and spending time at The Salvation Army.

For me, apart form a few scars and a yearly hospital check up, my donation is pretty much a thing of the past. I have no lasting issues and can laugh about how much I swore immediately post-op. I blame the drugs!

To anyone thinking about donating organs, whether as a living donor or after death, I would say look at Tasha. She is an amazing example of the difference transplantation makes. We thought she was going to die 22 years ago, and she was saved by a family’s incredibly generous decision. We then thought that her life would be spent attached to a dialysis machine, feeling frail and worn out. Instead, she is now making the most of every single day, leading the best quality of life possible. What an inspiration!

Learn more about becoming a donor and to register your decision to be on the NHS Organ Donor Register