Tuesday 17 September 2019

'I love you and I feel absolutely connected to you'- Saoirse Perry on the organ donor who saved her life

When Saoirse Perry learned that she needed a transplant, she was shocked. But, she tells our reporter, she has come through the ordeal with flying colours, and is already hard at work completing her degree

Saoirse Perry has come through her organ transplant ordeal with flying colours. Photo: Marc Condren
Saoirse Perry has come through her organ transplant ordeal with flying colours. Photo: Marc Condren

Joy Orpen

When asked what message she would convey to the family who donated the organ that saved her life, Saoirse Perry (23) says, "I would tell them that I consider them to be modern- day superheroes".

Thanks to her transplant, this funky, upbeat and charismatic young woman can now look forward to a happy and productive future. And if she hadn't got that transplant? Well, she doesn't want to go down that dismal road.

Saoirse, who comes from Cabra in Dublin, explains that soon after her birth, she was diagnosed with cystic fibrosis (CF). Luckily, this disease of the lungs and the digestive system hardly affected her at all when she was a child. Nonetheless, parents Cieran Perry and Maria Ball (sister of The Commitments star, Angeline Ball) made absolutely sure that Saoirse led a healthy life. "I swam, went horse riding, did ballet and played the violin," she says.

When she left school, Saoirse began an arts degree at Maynooth University, with geography and ancient classics as her majors. She steamed along until her final year, when she became extremely ill. The first indication was considerable weight loss in the latter part of 2013. Serious chest infections soon followed, which were compounded by other problems, so Saoirse ended up in St Vincent's University Hospital. There, they discovered that her liver was not functioning properly and recommended the insertion of stents into her bile ducts to help them drain. Once that had been done, Saoirse went on holiday to Croatia. But, within days, she was home again and being whisked to hospital by her frantic parents. "Basically, my whole body had stopped working," she explains. And even though she remained in hospital being fed through a nasal gastric tube, Saoirse continued to deteriorate.

Nonetheless, on New Year's Eve, her family, with the consent of doctors, took her out for dinner. However, by the time they got her back to the hospital, Saoirse was in a coma and remained so, for two days. "The build-up of toxins caused by liver failure had affected my brain," she says, while adding that she and her boyfriend, Cillian Byrne, still managed to fulfil a vow to spend New Year's Eve together. "Even though I was in a coma, he stayed by my side, so we were together," she laughs.

It was now abundantly clear Saoirse was in the final stages of liver disease. So a specialist team at St Vincent's did an assessment and found her to be a suitable candidate for a transplant. "I was absolutely terrified when they told me," she remembers. "But then I thought about all the awful things I had gone through the previous year, and realised that this was the only way out of all that."

By now, Saoirse weighed just six stone, and was constantly ill with chest infections. She was advised to put on weight and to get as healthy as possible, in readiness for a transplant. So she went home and began in earnest to do all that she could to make herself fit for the complicated and demanding procedure. She consumed as many calories as possible; she took supplements, exercised as much as she could, given her low energy levels, and tried to stay positive. Over the next few months, Saoirse managed to put on a stone and a half in weight.

Then, one Saturday morning, four months later, she got that crucial call. "It was 9am and I was lying in bed when they phoned," she recalls. "I don't remember this, but my mother says I ran into the bathroom and slammed the door. I guess it was a shock to realise the transplant was finally becoming a reality. We all went to St Vincent's, where I was seen by the transplant team and given tests to make sure I was a good match for the organ. It took about three hours to get the go-ahead."

Having been given the all-clear, Saoirse was prepped for surgery and accompanied to the theatre by her family and Cillian. "I gave everyone a hug," she volunteers, "because you never know what is going to happen once you head through those doors."

Maria, Saoirse's mother, says they were advised to go home and wait for updates about their daughter. They got two calls; one to say the damaged liver had been removed, and a second one to say the donor organ had been successfully implanted. Finally, they could breathe again. By mid-morning the next day, Saoirse was already awake. "All I can remember is having a huge tube in my neck," she says. And though she recovered quickly from the surgery, the next few months became a veritable roller coaster. "I had many complications," she explains. "I was taken back to ICU several times."

Saoirse says she became so immersed in, and concerned about, her erratic recovery, that she was constantly asking medical staff about her status. "I knew all my blood levels," she volunteers. She says Kaiser, her husky dog, was crucial in helping her stay calm and in getting well. "My mum brought him to the hospital after my transplant, and when I saw him, I just bawled," she says. "When you go through an experience as difficult as this, you need something like a dog to help you cope."

And even though her health was up and down, a day did come, three months after the transplant, when Saoirse was allowed to go home. Her dedicated and fashionable mum then came up with the idea of starting a pop-up vintage shop online, and at local markets. Her aim was to take her daughter's mind off the trauma she had been through. It worked brilliantly; Saoirse was soon busy sourcing and selling the clothes.

Just eight months after the transplant, Saoirse was able to return to college. Currently, she is hard at work completing her degree and is also raising awareness about organ donation.

"This transplant saved my life. But it doesn't just affect me - it affects my whole family and all my friends," she says with deep conviction.

When asked what she might say to the family who donated their loved one's organs, including the liver she received, Saoirse puts it this way: "I would say I love you and I feel absolutely connected to you. I believe you, and anyone else who carries an organ donor card, are the superheroes of this world. If someone loses a life, it's a very, very dark place. But organ donation paints that dark place with a very bright light."

Organ Donor Awareness Week, organised by the Irish Kidney Association (IKA), is taking place until April 9. For organ donor cards, freetext DONOR to 50050, lo-call (1890) 543-639, or see ika.ie

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