It’s taken a mixture of life experience and tough lessons to realise that some people have it worse. I am 25, from Northern Ireland and currently spending time in the USA with my other half.
My story starts just before my 18th birthday. This stage of life involves big exams, lots of 18th birthday parties and lack of sleep. I had been a healthy teen, played hockey and tennis, and did a lot of extra-curricular activities. Therefore, feeling tired and grumpy wasn’t uncommon among me and my friends. However, I soon also developed strange neurological problems, like pins and needles in my arms and having auras. I was having a ridiculous amount of nose bleeds and fainting from cramps in my legs! I went to the doctor a few times, but they couldn’t find anything wrong with me. They thought it might be glandular fever.
Things escalated a few weeks later. I looked in the mirror and thought my skin and eyes had a yellow hue, but I thought I was imagining things. My tummy felt like it was being stretched and I constantly felt bloated. Then, the dreaded vomiting/diarrhoea started. I had never felt so sick in my life, but figured it must be a bad case of food poisoning. However, after a few days, it got to the point where I couldn’t even stand up any more and I looked the same colour as Lisa Simpson. Despite doctors saying this was normal, my parents decided enough was enough and took me to our local A&E.
Fast forward on the hospital details, the next day I was quickly put on an air ambulance and being flown to London to the Liver Intensive Therapy Unit. They had no idea what had caused it, but I was in end stage liver failure. The consultants told my parents that I had only a few days to live and that the only thing that would save me would be liver transplantation. In hindsight, I am very glad they didn’t tell me that!
I was super-urgently listed for transplant, which meant I got the next available liver in the U.K. Amazingly, one became available a day and a half later. At the time, normal waiting times for liver was 58 days+. The day it became available was the worst snow in London in 18 years. I learnt after surgery the anaesthetist had walked 3 miles in the snow to get in on time, as public transit was down.
9.5 hours later, I was through my liver transplant. Little did I know at the time that this day would change my life forever.
Social Media and Netflix
They biopsied my deceased liver and discovered I had Wilson’s Disease. This is a rare genetic disease that both my parents carried but had no way of knowing. Usually it presents in childhood with neurological problems, but I had not. Only 5% of Wilson’s patients present like this, and require emergency liver transplantation. Through the powers of social media, I recently met and become friends with a man (now 30) in Scotland who has a very similar story.
After 2 months in hospital with complications such as pneumonia, infection, rejection and a pulmonary embolism, I was allowed home! We should be grateful we now have Netflix etc., back then it was only day-time TV (AWFUL) and DVDs. It took at least 6 months to physically recover due to complications. With the help of some wonderful teachers, I was able to finish school at home, the same year as my friends.
Organ Donation Saves Lives
This brings me to my donor. I was 18, and had never even considered organ donation or thought about transplants. To be told that your new liver was from a 13-year-old boy from Scotland, again, overwhelming! However, I decided a few months after my transplant that I wanted to write a letter to his family to tell them how grateful I was. I can’t remember how many times I crumpled up page after page, trying to think of the most appropriate way to say thank you and sorry at the same time.
I remember the day my mum came into my room to say one of the transplant co-ordinators was on the phone.
“Hi Cara, we just wanted to let you know, we’ve received a letter from your donor’s mother. We’ll be monitoring the correspondence between you both, and you’ll get the letter in a few days.”
I remember saying thank you, then crying. I couldn’t believe it. I’d been told to not expect a reply, so hadn’t. My donor was called Daryl, and his mum Lily had written back. We sent a few letters back and forth and then decided we wanted to meet. We met in 2010 in her hometown in Scotland. The donor co-ordinator who looked after Daryl was there, as well as the BBC as it was the first meeting of a donor family and recipient in Scotland. We are still friends today, and I’m so grateful to have had the chance to get to know who Daryl was and show his family how he saved lives.
Organ Donation Influences Lives
Between then and now, I have become a registered nurse, travelled around the world, walked a marathon for charity, competed in the transplant games and most importantly spent time with family and friends that I never could have if it hadn’t been for Daryl, his family and the NHS. I see my transplant team in Northern Ireland every 4 months and take my medication every day. This keeps me right.
Sending Strength and Hope
For those of you on the other side of transplant, don’t shy away in fear, enjoy your second chance of life. Remember, not everything said online is the truth. A lot of people saying you can’t do this or shouldn’t do that. Ask your transplant team, they will know the answer and it may surprise you.
If you’ve made it this far, thank you for reading. I hope it’s been interesting and hopefully helpful. Best of health to everyone and please feel free to get in contact if you have any questions or need support. You can find Cara on Facebook in the Transplant Chat group.
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