Sarah Harwood was 18 when she crash landed into kidney failure, was diagnosed with Goodpastures Syndrome and her life was turned upside down on haemodialysis. Then in early 2007 she received the call that would change her life again; a donor kidney was available for her.
In 2018, she celebrated the tenth anniversary of her successful transplant.
Sarah is pursuing her career at Kidney Research UK - here's more about her transplant journey.
Q. You say you crash landed into kidney failure and dialysis, what happened to you?
I was ill throughout most of the time I was taking my A-levels. I just couldn’t stop being tired. At first I thought it was stress. I mean, I was trying to revise, go to school and hold down two jobs. I was having headaches and feeling and being sick pretty much all the time. I kept seeing the doctor and was told I had anaemia, prescribed medication. Fan-bloody-tastic, the meds were only going to kick in in a few weeks. I’d be with finished my exams by then!
I managed to make my way through them and then it was off to the sun and sea; a holiday with my friends to Zakynthos. But my health only got worse, not better. My ankles were like two great watermelons on the end of my legs. I felt a right numpty being in a holiday resort with bandaged legs! On top of that I found myself sleeping up to 18 hours a day. Then I woke up drained and exhausted.
Once I was back home, I continued to get worse. Mum and Dad took me back to the doctors insisting that I be properly tested. Next thing I know I’m being taken to a renal ward. My kidneys aren’t working, a neckline is been put in, I’m having a plasma exchange and then dialysis.
Q. How did you deal with being on dialysis?
Being on dialysis definitely affects people in different ways. I mean I was only 18 and suddenly got a diagnosis of kidney failure and then was started dialysis the very same day! It wasn’t like any experience I had had before. I had haemodialysis in hospital three times a week for up to four hours a time. I hated it; it was a horrible time for me. How do you describe having your blood pumped out of your body, put through a machine and pumped back in again? I felt lightheaded, I vomited, I had migraines. And the process always made my heart flutter ‘cos my neckline went all the way to my heart. I’d finish the session, go home but be back in hospital a few hours later as I was so unwell. The cocktail of medications I was put on to help manage my symptoms didn’t help either.
But it wasn’t just being stuck to a machine for hours at a time that affected me. The environment was so alien too. The next youngest person in my unit was in their early 80s and once I actually saw someone pass away in front of me while medical staff tried emergency resuscitation.
Saying that, the healthcare staff and nurses were fantastic. I spent so much time at the unit that I really got to know them. And not only them. You spend so much time at the hospital that you get to meet and to know reception staff, tea ladies, even the cleaners! Some of my best memories of what was mostly a horrendous time was of the people who brought me a drink and a biscuit.
Kidney patients are lifetime patients. And now I’ve been going to the same unit for over ten years and you get to know people and they get to know you.
Q. What were the hardest elements of your illness to live with?
Everything about my illness was and still is hard to deal with. My condition – Goodpastures Syndrome – is an aggressive immune disease. It meant my own body’s immune system was producing antibodies that were attacking my own kidneys.
It’s like living with any chronic condition, there were struggles and I had to make adjustments – both physically and mentally. Dealing with the meds on top of the dialysis meant a major lifestyle change for me. I had to defer my place at university simply because I wasn’t well enough.
If my disease had been picked up earlier I wouldn’t have had to have the dialysis or even the transplant. But even though I’ve had a successful transplant, it is a treatment and not a cure. Since my surgery, I’ve been hospitalised with flu twice, developed viral meningitis, had endless incidents of conjunctivitis, had severe tonsillitis, was hospitalised with glandular fever three times, had kidney rejection and even had to have a biopsy on my new kidney.
My family were and still are amazing at dealing with me and my illnesses. They rallied round, made endless trips to the hospital, always ensured I was looked after. In the worst, darkest moments they helped pull me through and keep me going. Like when my big brother kicked the bathroom door in to get me to go to dialysis. The most positive thing to come out of my illness was Willow, my chocolate Labrador. To keep me company and help me cope my family got me the one thing I had always wanted: a puppy. She is a bit of an old girl now and we are both going grey, but still going strong!
Q. How did you feel when you heard a donor had been found?
Even after all these years, I still remember how I felt at the exact moment we got the call that a donor had been found. It was precisely 5.15pm on Sunday 25 February 2007, and it was my dad who answered the phone. I honestly wasn’t expecting it, so it was a total shock. I burst into tears and had to sit down. Mum was in a panic.
We were all such a mix of emotions. All of us. Relief, panic, fear and hope all rolled up in a jumbled mess. It was crossing our fingers and hoping that the transplant would work, that this gift from a stranger we knew nothing about would be the very thing that would save my life!
Q. And how is life for you now?
Apart from a few blips, some more dramatic than others, the transplant worked and I was able to go on and study history at the University of St Andrews, and then got myself a job at Wimbledon Football Club.
Today I am Patient Involvement Coordinator at Kidney Research UK. I work with kidney patients, renal units and more. I raise awareness of the importance of patients being involved in medical research and have the privilege of being able to support those who choose to get involved. I get to be out and about sharing my story with patients and their families, and I also get to learn what others have been through too.
Working for Kidney Research UK has also enabled me to do things I would never have dreamed of trying before. I got the chance to represent the charity at the British Transplant Games in 2016 and won two bronze medals! How great was that?
It has been over 10 years since my transplant and I can’t quite believe it. I am excited to celebrate with my friends and family, but this time of year is always a double-edged sword. For me it is also about remembering that somewhere a family is remembering the loved one that they lost. I have never been able to find the words to describe how grateful I am for their decision to be an organ donor, how can you say thank you for saving my life? I hope that if they could see me, they see someone who tries to appreciate the gift they received. So it has been an eventful 10 years and I have done many things I never thought I would get to do. Now I am looking to the future and thinking about what else I can achieve. For starters I have two medal titles to defend at the British Transplant Games! Here's to another 10 years and more!
Sarah’s story features in our Kidney Health Inequalities in the UK report.
Last reviewed March 2019
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