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Damien Edgar

Lisburn woman with kidney transplant goes from "death's door" to helping others like her

A Lisburn woman has opened up about her lifelong journey with chronic kidney disease, her transplant and how she's determined to help those coming behind her.

Megan Cairns was diagnosed with complete renal failure at just five-years-old and in her own words was "at death's door" when her kidney diagnosis was picked up.

The 26-year-old is now working to raise awareness of chronic kidney disease and the importance of organ donation.

Read more: Daithi's Law: Stormont Assembly recalled over stalled organ donation legislation

"I was diagnosed with complete renal failure when I was five, unfortunately it wasn't picked up until my kidneys had completely failed," she said.

"I was pretty much at death's door unfortunately when it was picked up, to the extent when I went to the Royal Victoria Hospital for Sick Children in Belfast, the anaesthetist wouldn't take me to theatre because I was so ill.

"They were scared of me basically dying on the table.

"Actually when the consultant that night heard my blood levels when I was admitted, she said 'that can't be right, a child can't be alive and have those results'.

"She was shocked, she actually remembers standing in B&Q being on-call and hearing those results, it's just something that's always stuck with her even from all those years ago."

What followed for Megan was seven years of dialysis, mostly through the peritoneal method, which involves a catheter being inserted into the stomach.

It meant her parents having to learn how to dialyse her, with that process generally taking 12 hours overnight.

Her diet was also strictly limited and she could only take on 500-750ml of fluid in total each day, which meant her childhood was fraught with a lot more complications than most of the other children she knew.

Her family and extended family were all tested to see if they would be a match, but despite one match, her consultant advised waiting would be the best option to avoid further complications in later life.

Finally, after seven long years, Megan got the news on a day that seemed very apt for it.

"I actually got the call for my transplant on my 12th birthday," she revealed.

"It was 1.30am and I was on dialysis so I didn't know and my parents got the call.

"My cousin was staying with us and he was nearly like a brother to me and that morning when I woke up, they were all sat round my bed and my mum said, 'If you could have anything for your birthday, what would it be?'.

"Obviously the first thing I thought of was a kidney but by this stage I'd seen other kids getting their transplants and I didn't want to say that and have it not be the case, but I couldn't think of anything else, so the words 'a kidney' came out.

"And bless, my mum started to cry and goes 'well you're getting your kidney'."

Megan faced three months in isolation due to the high level of immuno-suppressants she was on after her transplant in May 2008, but it meant she was able to start school in September having completed her 11+.

However, even that was not straightforward and she had to show a great deal of resilience to get through her school years, powered in part by her love for learning.

"I was on a high dose of steroids as part of my medication regime, you know I had the round face and was bullied for that," she said.

"Part of the way you can tell something is really wrong with children is they don't grow so I am quite short, I'm not even 4ft 10ins and I struggled with friendships because of it all because kids don't understand what's going on."

Megan has not let that love of education fade away despite having to take time away from university when she developed unknown sepsis.

"My fiancé Andrew, we had only been dating for six months and he had started a job in England, but he flew over every two weeks from when he was allowed to see me, as for a while they thought it was meningitis," she said.

"Even just little things like that for a partner, they have to take on this nearly carer role at times, but he is amazing and I can't ask for much more that way and I'm very blessed to have found someone like that."

Megan is in the middle of further education at Queen's University Belfast and says her passion is to try and use what she has experienced to help others like her.

"I started a PhD in October (QUB School of Nursing) with regards to sexual disfunction in chronic kidney disease and even that is a big thing for me because I've always wanted to help people behind me that are diagnosed with the disease, no matter their age or gender," she said.

"Sexual function can be impaired because the kidney is responsible for a lot of different hormones, so there's a lot of aspects of care that people might not be aware of."

She also wanted to highlight that although her transplant has allowed her to live a less inhibited life, it is not a total solution to her difficulties.

"I think that's something people don't understand, a transplant is a form of treatment, it's not a cure," she added.

"I am able to live a generally similar life to everybody else, so I'm really into weightlifting and I go to the gym - I couldn't have done that before my transplant.

"The same with travelling and seeing the world and stuff like that.

"But a side-effect can be reoccurring gout that I've had, where my foot has actually started to bruise because there's so much swelling and you're stuck in bed with pain all day, so there's ups and downs with it that people maybe don't understand."

Megan has organised an awareness-raising event for March 9, which is World Kidney Day in a bid to improve the understanding around chronic kidney disease.

"The Students Union had an award for funding for events that helped reflect volunteering in the local community," she said.

"I came up with the idea of an event on World Kidney Day (March 9), called 'Are you kidney-ing me?', so a bit of a pun on it.

"That's to help raise awareness of chronic kidney disease, even just making people aware that it affects people of all ages.

"And trying to teach people how they can keep their kidneys healthy and to raise awareness of organ donation and encourage students to sign up if they can."

The topic of organ donation is one that Megan warms to, saying it can make such a difference if people outline their organ donation preferences.

"They are needed and I think it's something that's really important to touch upon with that legislation, being the only part of the UK that doesn't have that in place is really disappointing to be honest," she said.

"The likes of myself, my donation came from a 21-year-old, which just shows that you never know when your last day is.

"So I always encourage people to sign up and not think 'I have X number of years left'.

"One person can save up to nine lives, it's not just about kidney transplants."

Megan's event will be aided by help from Northern Ireland Kidney Research Fund, from which members will be there on the day, in addition to Kidney Research UK, Kidney Care UK, and Organ Donation NI.

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