

Sarah’s Story
Living with pulmonary atresia with intact ventricular septum
OHS at two days old (1980) and three years old (1983)
So here I go – finally putting pen to paper after all these years. I have recently been inspired by so many people who I have…

CHD - Isolating During a Global Pandemic: A personal approach
James Cobb shares with us his perspectives on and experiences of isolating during the global pandemic...
The Covid-19 pandemic has undoubtedly been a tragedy for society; families have lost loved ones and friends have lost great friends. I…

My Heart Story Natalie Jones
My name is Natalie Jones and I am 38. I have a congenital heart condition known as transposition of the great arteries. This was discovered when I was 2 weeks old. At 18 months old I had open heart surgery to correct it. As I was so young, I…

Emily's Story
Name: Emily Sterling
Age: 24
Age when diagnosed: 6 weeks old
Condition: Bicuspid aortic valve, mixed aortic valve disease (aortic stenosis and regurgitation)
In February 2015 (just after my 20th birthday) I had open heart surgery…

Liza's Story
Name: Liza Morton
Age: 41
Age Diagnosed: At birth
Condition: Congenital heart block and a surgically fixed atrial septal defect (ASD)
Growing up, I tried to focus on the positives but we are our stories and mine emerged from difficulty.…

David's Story
Name: David Makinson
Age: 54, born May 1964
Age Diagnosed: Soon after birth at The Middlesex Hospital, London – the child of a single mother who wished to put me up for adoption.
How has CHD affected your mental health?
In a nutshell,…

Adam's Story
Name: Adam Stevens
Age: 39
Age when diagnosed: 2 weeks (originally suspected ToF)
Condition: Transposition of the great arteries.
How has having a heart condition impacted on your mental health?
It’s given a schema of life that…

Susan's Story
Name: Susan Manley nee Millard
Age: 66
Age when diagnosed: Before 1 year old
Condition: Three holes in the heart and faulty Tricuspid valve
How has having a heart condition impacted on your mental health?
We were the experimental…

Roderick's Story
Name: Roderick Skinner
Age: 77
Age when diagnosed: 44
Condition: Triple bypass and replacement of defective (congenital) aortic valve with a mechanical
heart valve.
How has having a heart condition impacted on your mental health?
The…

Izzy's Story
Read an Extract from Izzy's original post... My Open Heart.
I started to walk faster, legs shaking, and sheer panic overtook my entire body. As fast as my shaking legs could take me, I stumbled down the escalator of Oxford Circus station, attempting…

Counselling Support for Children and Young People
Here are some options you can explore to find counselling and psychological support near you.
Youth Counselling Services: Based in your local area, sometimes run by the local authority or by a charity. These vary across the country and…

My life on Warfarin
I have been taking the drug warfarin since I was just six months old. I'm now 23, and when I tell people I take warfarin, they are sometimes confused and shocked. Why would a seemingly healthy 23 year old woman be on a drug commonly associated…

Getting older with CHD - Part 2
"acquiring" other conditions
This is the second of two articles Written by Dr Leisa Freeman, Consultant GUCH Cardiologist, and Toni Hardiman, Specialist GUCH Nurse GUCH Clinic Norfolk & Norwich University NHS Hospital. These articles…

You need an MRI scan of your heart
Written collaboratively by Jonathan Upton, adult congenital heart patient and Helena Francis, Adult Congenital Heart Clinical Nurse Specialist at University Hospital Southampton NHS Foundation Trust
Perhaps these words are familiar to you.…

Lets chill out
Taking time to relax is an important part of dealing with the stresses that life can throw at us. Learning how to relax is particularly helpful for those times when we get anxious or panicky. Practicing relaxation techniques as preparation for…

Patients' Experiences of Waking up in Intensive Care
Patients' Experiences of Waking up in Intensive Care
Intensive Care can be perceived as somewhere you will only find yourself if you are very sick. I invited GUCH patients and their relatives to share their memories of the intensive care units…

Ebstein's and me
Ebstein's and me
by Margaret Smith
I was born in 1952 and diagnosed with Ebstein's Anomaly at birth. The prognosis was that I would not survive with this condition. I spent my first few years in and out of Sully Hospital in South Wales.…

Getting older with CHD. Part One
This is the first of two articles Written by Dr Leisa Freeman, Consultant GUCH Cardiologist, and Toni Hardiman, Specialist GUCH Nurse GUCH Clinic Norfolk & Norwich University NHS Hospital. These articles originally appeared in issue 68…

World Cup rehabilitation
My twin sister and I were born on 4th September 1981, I was born with Tetralogy of Fallot (TOF) and had open heart surgery at the age of three to repair a hole in my heart. I am afraid I don't remember too much about this particular operation…

Inspiring others
My name is Ashley. I Love taking part in social events with the Somerville Foundation and especially enjoyed the Bloomsbury Bowling Day and the Michael Jackson thriller Day. I met lots of new people and had a great time.
I have also attended…

Overcoming the odds - My Olympic Dream
Kelly Staddon is a truly remarkable young lady.
Born in 1995, she was diagnosed with Transposition of the Great Arteries (TGA), a congenital heart condition which means that the pulmonary artery and the aorta are the wrong way round. This…

My Open Heart
I started to walk faster, legs shaking, and sheer panic overtook my entire body. As fast as my shaking legs could take me, I stumbled down the escalator of Oxford Circus station, attempting to get home. I carried the ‘panic attack’ label…

My Transition Story
For everyone, growing up is incredibly difficult. From the moment you turn 18, you are catapulted into adult life. This often starts with little changes such as paying tax and national insurance, being able to buy alcohol and being able to vote.…

Irreplaceable Differences
I’m Donna. I’m 49, married, with 2 children; nothing out of the ordinary there - but everyone has a story to tell and this is mine…
When I was born in 1967 ante-natal scans were uncommon, so when I was turning blue when feeding at 3…

A Part of Me
At 1:05 am on the 3rd October 2016, it all suddenly hit me. “Not again”, I thought, as my heart thudded erratically in my chest, “Why me?”, “What are the chances?” – all the clichés ran through my head.
It was 4 days after…

Why I think happiness is a choice
Do you choose happiness?
In recent months, I have been amazed by how many people have commented on and expressed how inspired they have been by my optimism and positivity when facing my medical challenges. My usual retort is that I just don’t…

The Power of Breath
Inspiration is all around us. If I look around me there are plenty of people I admire like the young girl who does the paper round every morning to help her mother, Pradyumna Kumar, a gentleman who was so defiant to be self-sufficient and cycled…

Lucy's experience of Surgery
My reaction from the moment I discovered the date of my operation was to cry, panic and worry – right up until the day arrived! I knew I had to get through surgery to survive and look forward to my future. This was a chance of a new beginning.…

My battle with Cancer and TOF
25th May 2016 - I was sat in outpatients waiting to see my specialist cardiologist Dr D. Wilson, even though this was a routine appointment, I felt awful. I’d been to my GP numerous times struggling with my monthlies. I’d been told I was…