I wrote this post 5 years ago and it just sat here as my blog wasn't live, but I wrote it to process my feelings around hitting such a huge milestone, it's obviously now out of date but I decided to just post it as is!
The blog is back. It might be a one off, I might stay consistent, who knows. As I often say 'life has a plan but we'll never know what it is'.
I'm not quite 5 years post transplant, my anniversary is 27th Feb 2023 but the countdown to this anniversary has been going on for months now. Every year feels like a big deal but this anniversary feels like a huge deal and I'm not fully sure why.
A lot has happened since I was 21 and put on that transplant waiting list, in fact, looking back is like watching a film about a girl I kind of know but not very well. I have a scar down the centre of my chest to remind me of what I've been through, but even that has faded to a point where I don't even notice it.
So my emotions have been quite mixed recently as I reflect over the last 5 years. I've gained 4 nieces and nephews. Lost a bunny, adopted a bunny. Gained a husband, relocated. Started a career that I love. I've met hundreds of new people, shared my story, listened to other people's. And recently, I lost my good friend Nicole, which has hit me really hard.
I read an old blog entry when I opened up Blogger ready to write this. My write up of my transplant assessment which took place this time 5 years ago. I wrote about a girl I met on the ward who couldn't have a transplant as she had an infection and was being kept alive by a mechanical heart. That girl was Nicole, the very first person I connected with in this weird and wonderful world of transplantees, and someone who really changed the way I see the world.
Nicole was like a big ball of light who made you smile the second she spoke. She was given a cruel hand in life but she never complained. She taught me to speak up if something wasn't right and to advocate for myself in the medical world, not an easy thing to do when you're really sick. She also encouraged my love for pjamas, she had more pairs than anyone on this earth. She would disappear for a bit and come back with freshly braided hair and of course a Costa. She managed to connect with everyone she came into contact with and Wythenshawe Hospital won't be as bright without her.
Her passing really makes me wonder why I'm still here. It's a feeling and thought I don't think I can explain unless you've experienced it. It's a feeling that first started on the ward about a week after my transplant when Ciaran and I first spoke about my donor. Although I was so grateful I'd had my operation and was on the road to recovery, I found myself wishing that my donor had survived. I know that it's pointless wondering why things happen the way they do, but it will never feel fair to me that some people live and some people die and there's no rhyme or reason to it. This feeling of (I think survivors guilt) pops up from time to time, especially when someone I know passes away too soon.
Despite the guilt, I am beyond grateful to still be here. I never feel like I'm doing enough, which means I'm always tired and always pushing myself to the limit as I still try to figure out what my body/brain is capable of. I'm on a full time graduate scheme which is pretty full on, I have my day job but I also have so much learning and self development on top. This uses up most of my energy but I could never not get involved with other things, the things that bring me true joy.
I volunteer whenever I can, I take on way too much because I don't like to say no. I'm currently working on creating a national support group for young people living with heart and lung transplants, I'd be so proud to be able to accomplish this. This involves working with psychologists and doctors and about once a week I debate going back to university and doing my masters & PhD in Psychology so that I could do this work full time. Never say never.
I am also a peer mentor with Cardiomyopathy UK, where I connect with people living with Cardiomyopathy, mainly people with Restrictive Cardiomyopathy like I had or people needing transplants. I learn more everyday, as do doctors, about Cardiomyopathy and I have such admiration for people who live long term with the condition. I'm really interested in genetics at the moment and there is more and more research being done in this area. This really interests me as I would one day like to have a child and I carry a faulty TII3N gene which is linked mainly with hypertrophic Cardiomyopathy.
I am also a wife now and recently retired from part time wedding planning! We had the most incredible wedding in Florence, Italy in September, something that felt completely surreal the whole time it was happening. Ciaran has been by my side since my very first GP appointment where I told the doctor I felt more tired than usual so to be able to celebrate our love and just have so much fun with our family and friends was a dream come true.
The past 5 years have been a whirlwind (I didn't even mention the global pandemic in here), but I wouldn't trade my life for anyone's. I am so beyond blessed to be living it.
This blog is very much a form of therapy for me and I feel better just for writing down my many thoughts and feelings. But if you did actually make it all the way to the end, please share your wishes for organ donation with your family and friends. My donors family knew its what she would have wanted and I am certain that it brings them a small bit of comfort knowing that their daughters heart lives on ❤️
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