This is by far the hardest blog I have written to date, because it’s not about the woes of being a small business owner who happens to have a transplant. It’s about a transplanted patient who just happens to own a business.
Tomorrow is the start of National Transplant Week and people who have been transplanted are being encouraged to share their story and to get people talking about organ donation. If you are in either shop or anywhere on social media the coming week, you’ll notice the #have the conversation posters.
And that’s the favour I’m asking. Just, have the conversation. Let your family and friends know your views on organ donation. I’m writing this because 2 families I will never meet had that conversation.
So here goes...
I was 21 living in the States, working in Irish bars, playing football, partying hard and totally self absorbed.
At 21 and half, I was back living in Belfast, playing football, not partying quite so much, but still self absorbed when a breeze block landed on my head. Well, a breeze block in the form of a brown envelope from the City Hospital informing me that after years as a routinely monitored renal patient, dialysis was looming and a kidney transplant on the cards.
I cried a lot. I thought my world was over and in a way the world that I knew was.
At 24 I got a call one Friday morning which led to my first kidney transplant. I lost the transplanted organ a short time later, through no fault of my own, something which took me quite a while to digest. For the second time in a couple of years I cried a lot. I was angry. I was scared and I felt immensely guilty. Dialysis wasn’t just imminent any more, it was an emergency.
I hated being sick. I spent about six months being really sick and what I hated the most was being completely dependent on the hospital, family, my husband and friends. It is hard for me to think about this time as I spent a lot of it pretending to the world that all was ok. But it wasn’t. It wasn’t so much the sickness, the pain, spending a lot of time in Level 11 of the City Hospital; it was the fear of the unknown. When the last visitor left, the night meds were handed out and it was just me in a small room on my own for the next 9 hours, the fear was all consuming.
It's funny so many people say how brave I am giving up law and opening Kaffe O- “you felt the fear and did it anyway Orla” and I politely smile, whilst inside feeling like a complete fraud. What I want to say is actually there was a time in my life that I was so afraid that I know I will never be that afraid again.
I spent the ages of 25-28 on dialysis and whilst I made sure it wouldn’t dictate my life, I continued to work, get married and travel, I hated being on dialysis too. I hated being dependent.
Dependent on a machine which kept me alive and which I was connected to for 8 hours every night. Dependent on the plastic tube implanted in my stomach and the 2 litres of fluid I carried in there every day. Dependent on people who carried boxes up stairs for me, took my dog out when I was too tired and those who helped me financially when I wasn’t able to work.
I felt like a burden to those closest to me- even though I knew this was the furthest thing from their mind.
I think it’s pretty fair to say, I like being an independent woman.
And then one Friday morning when I was 28, another call came to tell me a kidney was coming in for me and now at 37, this kidney has been a part of me for nearly nine years. It is my most precious possession.
I feel truly grateful and blessed to be part of the transplanted community. I have been given a whole new world and a whole new mindset. I don’t feel dependent any more. I’m not afraid anymore.
I love that I can run, climb mountains, swim in the sea, go to the gym, travel, eat what I want, go where I want, even just have a bath without the fear of infection!
It’s hard to explain but when I had the transplant there was a definite shift in how I viewed the world and the people in it.
I’m not embarrassed to tell my friends and family that I love them all the time, because I can and I do. I’m not embarrassed to admit that I love my husband more than I ever thought possible. I’m not embarrassed to admit that there are times when I’m walking down the street and a wave of gratitude comes over me, which makes me grin from ear to ear.
I feel such freedom. I don’t worry about the future any more. I know that whatever happens I will have the strength to deal with it when it happens.
I feel blessed that I was able to change my career path and do something for a living I love. I feel humbled by the amazing people who have helped me get there and those who share my vision for the future of the business and who go above and beyond the call of duty to help us get there.
I feel lucky to have realised that life really is too short to not spend it doing the things you love the most with the people you love the most.
I have become part of a whole new family of transplanted people through my sport and work with Transplant Sport Northern Ireland. These people really are my second family.
Don’t get me wrong it isn’t all dancing in the street. I hate that at 37 I have had to go to the funerals of two of my great friends and my heart still feels like a piece is missing. But I feel so lucky that I got to be a part of their lives for a short while.
I get impatient when people moan about the mundane, spread negativity, dramatise unnecessarily and it takes all my will power to not shake them and scream at them to “get some perspective”.
I will never meet the family who gave me their loved ones kidney. When I celebrate my second birthday every year, I know they are having a completely different experience. All I can hope for is that somehow the universe lets them know that I am trying my best to make the most of life and be a better person. I’m far far from perfect but I promise I will spend the rest of my time, trying to be the best I can be. That’s the only way I can think of to thank them, thank them for the gift of time.