Colin Clewes is an adult CHD patient and owns Pennine Signs in Mytholmroyd, West Yorkshire! Colin has had a coarctation repair, a partial anomalous pulmonary venous drainage repaired and he has a bicuspid aortic valve.
He has been a huge CHSF supporter over the years, including numerous free printing projects, and is now helping us forge our charity future as our newest Trustee!
We spoke to Colin who told us about his journey with CHD so far and how that inspires him on the CHSF Board of Trustees…
When did you find out you had congenital heart disease?
I don’t think there has ever been a moment in my life that I could say I found out I had congenital heart disease. There were conversations I can remember with consultants and my parents as I sat there as a child, and over time you just become aware.
My condition was diagnosed when I was just 11 days old when I suddenly became extremely ill and had to be rushed by my parents to hospital. Luckily for me, a nurse who had just undertaken a placement with the cardiac surgery team at the hospital in Louisville recognised my symptoms and before my parents could blink I was in theatre having the first of my aortic repairs.
Since that day, over 41 years ago, I have undergone two more open heart surgeries, both at Leeds back in the day when everything was at Killingbeck Hospital.
Colin at 1 month old, 20 days after his first open heart surgery
Did you think your CHD would ever limit you in what you wanted to achieve in life?
Maybe it’s a Yorkshire thing but getting on with it is so, so important. As such, limiting what I want to achieve has never even crossed my mind. After each operation my parents dusted me off and taught me to get on with life and that has stuck with me to this day.
Colin proudly shared his scar for the launch of CHSF’s Keeping The Beat campaign in 2016
Did you have any further treatment, or will you need any?
To date I have had three lots of surgery. I have a valve that is probably not going to last the course and may need swapping along with the need for a pacemaker, however all being well I hope to avoid any more surgery for a while.
What would you say to parents who have children with congenital heart disease, should they worry about what their children can achieve?
Simply don’t worry. Sounds strange but you can’t change the fact your child has a congenital heart disease. What you can do is teach them it doesn’t need to limit how they can enjoy life.
What is achievement? It’s different to all of us. What I see as an achievement is far different to the person stood next to me, its just a question of perspective.
41 years ago, the impossible in medical terms for congenital heart patients was far different to what it is today. So tomorrow’s impossible will be far different again so please, please don’t limit what you think your child can achieve – as you’re the one then who is then limiting them.
Give them strength, believe for them and they will surprise you without a doubt at just what they can achieve in a fulfilling life.
Is there anything you would like to say about Children’s Heart Surgery Fund?
Yes, the team achieve far more than you realise and have always been there for the LCHU when needed. Yorkshire and its CHD patients are lucky to have a charity like CHSF attached to the Leeds Congenital Heart Unit.
Colin 6 weeks after open heart surgery, 1987
Can you tell us about your experiences of using a Kardia mobile device, funded by CHSF supporters?
I had been suffering with AFib (Atrial Fibrillation) attacks for a while and one of the consultants suggested they arrange a Kardia mobile device to record my episodes during my daily life so they could help consider a better treatment plan. I didn’t think too much of it and a week later it arrived in the post.
What surprised me is when the device came and the note said it had been funded by Children’s Heart Surgery Fund.
Even though I know of the great work CHSF does I didn’t know they helped adult patients as well. It came as a complete surprise at just how much the charity goes to help everyone in their journey with congenital heart defects.
The use of the Kardia device is simple. Hold your fingers to the points on the small device that fits to the back of your smart phone and a medically approved electrocardiogram (ECG) is taken. My use of this device allowed my consultant to suggest a cardioversion and long-term treatment plan. It provided peace of mind and helped with a better understanding of my episodes of AFib.
A Kardia device allows a patient to do an ECG using their smart phone
How does it feel to be a CHSF Trustee?
This is a hard question and in thinking about this has made me think of many experiences over the last 41 years of living with a congenital heart defect. Becoming a trustee feels oddly like coming full circle for me. I can’t really explain it.
The charity was formed when I was just a child and I remember doing a sponsored run back then to help raise money to provide sleeping quarters for parents staying with children in hospital at Killingbeck.
I think becoming a Trustee allows me now to try to ensure the Board has a patient voice who has “time served” in their experiences in passing through the hospital over the years.
Colin now, in 2022
Why did you take up the role?
That’s not a difficult question. Children’s Heart Surgery Fund helps people in so many ways it wasn’t really something I could pass up. As I said before it feels like coming full circle and now the correct time to hopefully be able to give back a little more.
Are you an adult CHD patient, and want to tell your story?
Head over to http://chsf.org.uk/warriorwednesday-share-your-story
We’d love to hear from you. Your story is someone else’s inspiration. Thank you.
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