From dramas to drama…

Fifth day of Christmas, and a guest blog from a good friend with a story to tell, and a song for our playlist…

“Hi, my name is Connie Taylor.  I was kindly asked by Live Loudly Donate Proudly if I wanted to write a bit about myself as what I like to call a Transplant-ee, and of course my immediate response was yes.  I don’t see myself as a seventeen-year-old university professor about to impart wisdom worth 22 Carat Gold, but I do hope I can shed some insight into the life of someone who (like the incredibly and admirably brave Lucia Quinney Mee) has gone through the strange and wonderful experience of a transplant, in the hope of inspiring others to learn more about it for themselves.

I was born in 2007 with a condition called Megacystis-microcolon-intestinal-hypoperistalsis syndrome (also known as Berdon syndrome – much easier to say!).  It is a condition that meant when I was born, my digestive and urinary organs had no muscle function.  Because my digestive system (stomach and intestines) didn’t work it meant that the only way I could be fed was intra-venously.  The downside of this was that my liver didn’t like it, and I ended up with severe liver disease.  So not only did I need a new stomach and intestines (small and large bowel), after a few months I desperately needed a liver too.  After 13 months of waiting and wishing, my parents finally got the call to say they found a match suitable for me to have my liver, stomach, pancreas, and bowel transplanted.  Unfortunately, it is currently not possible to have a bladder transplant so the need for catheterisation will always be a constant for me.

Thanks to the bravery of a young mother, whose son had sadly passed away in an accident, this young boy saved the lives of me and at least two other people and is someone I am eternally grateful for.  The choice to donate his organs gave me an opportunity that cannot match any other gift, the gift of life, and a second chance that must never go unrecognised.

This 12-hour transplant surgery, which included the removal of my spleen to ‘make room’, and removal of my appendix in case it should ever give me problems, was the first of many and varied surgeries. Unfortunately, being so small at the time of my transplants, there wasn’t enough space in my abdomen to fit the donor large bowel in, so this meant living with just a small bowel and an ileostomy (stoma) bag.

From transplant until now I’ve had many other issues; my new small bowel had ‘plumbing problems’ in 2014 (many tubes were tied, so to speak), I had a little bit of my own large bowel left in during the transplant, but this caused me no end of problems and was, literally, being a pain in my backside to put it very lightly! I eventually said sayonara to this bit of my own bowel in 2021 – my decision.  This was a major operation and meant I ended up with Sepsis, but it was worth it in the long run as that diseased bowel was not doing me any favours!  I said cheerio to a gastrostomy device in 2023 which used to give me nutritional feeds and liquid medication.  I also said hello to the use of a self-catheterisation device in 2022 which meant I no longer had to pee from a leaky suprapubic catheter tube, and I said ‘good to have you’ in the same year when I finally made peace with the inevitable reality of having a permanent ileostomy/stoma bag.  All things considered, you could say I had more of a spring in my step this past year, and all for very good reason.

Of course, growing up with this condition presented itself with many challenges such as the trips to the operating theatre which became a very difficult task for a long time, making me accidentally develop PTSD for a while (oopsies).  Yet, through the help of the wonderful child psychologist Dr Susie Willis, from Royal Belfast Hospital for Sick Children, I overcame my fear of anaesthetics and became more of a ‘cool cucumber’ when it comes to surgery.

On top of this, we cannot ignore the absolute rollercoaster that is school and navigating it, alongside a condition named longer than the alphabet, while everyone else’s worries seemed to only stretch to who said what at break time in the PE toilets!  If I’m honest, I never fully understood my medical condition for the majority of my childhood primary school years and I was a very reserved and shy person when it came to anything medical, so for about 16 years until sixth form in secondary school, I never mentioned it to anyone aside from my close family. But recently, my hospital experiences have somewhat faded out into the background, and I find myself being more open to other people.  That’s not to say I can’t still improve, but who doesn’t when it comes to confidence?

In hindsight, my life experience so far is something I am truly grateful for in a bittersweet way.  It has helped me become a very grateful person and approach things rationally with a positive outlook, despite my teenage cynicism at times.  This unique perspective of life has taught me many lessons and is probably worth more credit than I give myself now that I’m actually sitting and reflecting/typing about it!

So, as I write this during a free study period in my last year of A-levels (English Literature, Moving Image Arts, Performing Arts) with a self-catheterisation tube in my blazer pocket and a spare stoma bag in my schoolbag, I’m pretty excited for a future where hospital is something to very rarely think about. I do hope to pursue a career in the film industry and want to spread awareness around organ donation on a bigger scale, inspiring others to learn how they can one day save a life too.

Also, my song suggestion would be Pencil Full of Lead by Paolo Nutini –  a song which reminds me that even if there may be a multitude of problems going on around me, I still have all I need to get me through it.”

Connie Taylor Scarecrow Ballyclare Grammar Christmas 2024Connie – star performance as the Scarecrow
(School production of Wizard of Oz, Christmas 2024)