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The First Baby to Have a Heart Transplant – 31 Years On

By  18th November 2018

Having a transplant is a roller coaster. It has its ups, downs, straight and narrows and drives you absolutely round the bend… but in the long run it is worth it.

Kaylee Ann Olley seems like any other 31 year-year-old. She enjoys taking part in athletics, socialising with her friends and family and going out. But beneath the surface, Kaylee is no ordinary girl. 31 years ago, she was the first baby in the UK to receive a successful heart transplant, changing the game for transplantation in children across the UK.

Kaylee Ann Olley happens to be a friend of mine.

I met Kaylee in 2010, the year of my heart transplant, and have had the privilege of following her wonderful story ever since. It’s really nice to have a friend who understands the persistent struggles of being a transplant patient and we have bonded over the familiarity of our stories and feelings.

Kaylee as Baby

MIRACLE: Kaylee, at 5 months old, with her mother after her transplant.

This week I went for lunch with Kaylee, who is doing well. We chatted for hours about everything from boys, to travelling, to phobias, our experiences as transplant patients  and, of course, how she’s getting on 31 years down the line.

Something of a medical miracle, Kaylee holds a special place in the history of heart transplantation in babies. She explains: “without me as an experiment, as such, there are many transplantees that wouldn’t be here today and it’s an honour to be the first.” Kaylee’s surgery paved the way for hundreds more children and babies to receive life-saving heart transplants.

As documented on my blog before, living after a heart transplant isn’t easy. Agreeing on the fact that people don’t always understand the implications of such a major and life changing surgery, Kaylee spoke of how it’s often hard to get the public to understand what it’s really like. She said: “Transplantation is not a quick fix… you have to look after your organ, you have to take the drugs, you have to attend the hospital appointments, you have your angiograms, your CT scans, you know, its constant.”

Expanding on this, Kaylee explained how she often feels more pressure being the first baby in the UK to be transplanted saying how the constant focus on it  “can be mentally and physically exhausting” and that “one minute you can’t stop crying but the next minute you’re on a high.”

Of course though, having been given the gift of life, we discussed how special it feels to know that someone who’s no longer able to live their life, has enabled us to live ours. Kaylee said: “It’s rewarding at the same time, ‘cos you’re living a life with a part of someone else inside you that’s keeping you alive and you’re trying to make them proud.” This really resonated with me – often when I’m feeling down I remember that I’m not just living for myself,  I’m living for my donor too.

Kaylee with Chuf top

SAVED : Kaylee with her surgeon, Christopher McGregor, and her sister, Rebecca on her 31st Transplant Anniversary.

In the 31 years since the groundbreaking surgery that saved her life, it hasn’t always been plain – sailing for Kaylee: “In 2014, I collapsed with low heart and kidney function, pneumonia and pleurisy. I nearly died and as a result of that I’m still in recovery. That has been the hardest and toughest challenge of all.”

She told me that until her scare, she had always taken her heart for granted and it was only then that she realised how serious it all was. She said: “I survived but it really knocked me down psychologically…. I was so active for such a long time that I had to change my lifestyle to fit around my heart transplant and that just didn’t suit me. I was naive in the early days but having this scare has made me realise what it all means.”

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Despite her struggles, Kaylee keeps a positive attitude and encourages others to do the same. She has a message for others: “If you want to achieve something, believe in yourself” and always follows the motto of “Achieve, Believe, Succeed”.  Kaylee is a prime example of why transplantation, or any illness or difficulty for that matter, shouldn’t hold you back.

Having competed and won gold at the World Transplant Games in South Africa and the British Transplant Games,  Kaylee explains that in order to keep fit and healthy she goes to athletics. “It’s like home to me, it’s my comfort zone, without which I think I would fall apart. I’ve achieved more than I thought I ever could achieve.”

Kaylee at World Games

GOLD: Kaylee with her parents after winning her gold medal at the World Transplant Games.

It certainly isn’t all trials and tribulations though. We laughed about the ridiculous questions we get from people. Kaylee, between bursts of laughter, told me: “someone thought I just had an extra organ in my chest, not realising you have to take the first one out to replace it with another!.” Shocking.

Kaylee urges people to  register to donate their organs.  She said: “Having a transplant is a roller coaster. It has its ups, downs, straight and narrows and drives you absolutely round the bend… but in the long run it is worth it and is only possible if people sign up to the organ donor register.” She added that people shouldn’t forget to tell their family their wishes.

31 years since her innovational transplant, Kaylee looks forward to her future. “I’ve just had my 31 years post-transplant and it amazes me how far I have come and what I’ve achieved. For now, I’m just taking each day as it comes, appreciating everything I’ve got and  I’m hoping in the future to have my own little independent business and get back into work… to enjoy having fun with my friends and my family.”

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I cannot tell you how much I enjoyed learning more about Kaylee’s story – she is an incredibly driven and independent woman and a role model to transplantees (and non-transplantees) across the world. I wish her all the best for the future.

Me and Kaylee

CONNECTED: Kaylee and I have something very special in common.

Thank you so much, Kaylee for being my first interviewee and happy heart birthday!

Cecilia-Joy x

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