When Emma Constantine discovered a rash on her legs she had no idea that just a few months later she would be diagnosed with end-stage renal failure. Emma shares with us her transplant story.

I was healthy throughout my entire childhood when unexpectedly in October 2002, at the age of 17, an unusual rash appeared on my lower legs. I became extremely sick, vomiting most days and I lost around three stones. Despite meeting with a dermatologist, gastroenterologist and even an eating disorder specialist, no one could discover what was wrong with me.

It wasn’t until January 2003 when the gastroenterologist did a check on my kidneys that they discovered my function was down to 15%. I had entered end-stage renal failure and I had to ask what ‘renal’ meant.

I saw the consultant at the satellite unit at Medway Hospital in Gillingham, who explained that I would need a biopsy to determine what had caused my failure. This was carried out at Kent and Canterbury Hospital in March 2003, just after my 18th birthday. I discovered that I had suffered vasculitis (inflammation of the blood vessels) in my kidneys. It had caused the unexplained rash, but because I was so young, kidney problems hadn’t been considered a possibility. They couldn’t tell me what had caused it (and still can’t), only that it had come and gone and taken my kidney function with it.

I was told I would need a transplant

My kidney function was enough that I could continue for a little while with medication and controlling my diet. I was not a fan of giving up all my favourite snacks – no potassium for me!

And then, in summer 2003 my kidneys started to need help and my options for dialysis were explained. After discussions with my parents, I decided to go for CAPD (Continuous Ambulatory Peritoneal Dialysis) as I was still at school and doing my A-Levels and this seemed like a good fit. I didn’t like the idea of having a fistula (call me squeamish!) so I was fitted for my CAPD tube at Kent and Canterbury Hospital and taught how to do my bag change-overs. I was given a machine so I could do them overnight whilst I slept, and I only had to do one bag during the day, which was great. I was aware of the risks of my CAPD tube and during this time I, unfortunately, caught Peritonitis –it was very painful.

We had also decided I was going to receive a living related kidney donation from my mum. Both my parents were a match, but my dad would need to take time off work so we felt it made more sense for my mum to be the donor. The date was set for Guys Hospital on 20 February 2004, the same day as my Grandad’s birthday.

Just a few weeks before we had a little scare. My blood was showing signs of an infection and my wisdom teeth were suspected. I was sent to the orthodontist who, God bless him, told me, “You’re going through enough, I’m not taking your wisdom teeth out too.” Phew.

It was decided that the transplant would still go ahead. My parents and I travelled to London, arriving the day before for a pre-check-up and blood tests and I was given cyclosporin to take before the operation. It made me very sick, but I soon got used to it.

Mum went down for her op first whilst I sat with Dad. We were all very nervous. I went down about two hours later. The surgery took around six hours and the first thing I remember after waking up is saying, “I need a wee!” I spent the next seven days in hospital before returning home – my mum left hospital the day before.

I was very lucky, no rejection at all and I have continued to be lucky ever since with just one stay in hospital for sepsis (caused by a UTI), it was caught early and I have stayed pretty stable.

Life goes on

My transplant has enabled my life to move on. I started at Winchester University 18 months after my surgery and studied dance for three years, arranging my appointments whilst I was at home in Kent.

I got married in 2018 and my husband and I are thinking about trying for a baby, but we are in no rush. I no longer take MMF in anticipation and have been fine on azathioprine. I am focused on my weight, which is a constant battle for me, but my blood sugar is creeping up to within pre-diabetic levels and I am working hard to get back down to normal levels - I do not want to go through this again anytime soon!

The kidney donated to me by my mum is still pumping away and stable. It is now 17 years and I am so, so grateful that I have been lucky enough to have found such a good match - people always say me and mum are alike!

I remain thankful to my parents, to the NHS and the renal unit at Kent and Canterbury Hospital.