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Angela

Angela

Angela has shared her story with us: The first meal of my honeymoon, when I was 24, gave me dysentery. This triggered the genetic flaw that can lead to Ankylosing Spondylitis, an inflammatory arthritis which affects my joints, eyes, and bowel. But it was 20 years before I had this diagnosis. In that time, I was misdiagnosed which meant I received many unsuitable medications. When I did not respond to treatment I was labelled as a ‘non-compliant’ patient and sent for psychiatric treatment. The...

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Laurence

Laurence

Laurence (32), a primary school teacher from Cardiff, shares his experience in living with hydrocephalus and cerebral palsy. Laurence has been living with both these conditions since birth. Hydrocephalus is a condition where fluid is gathered in the brain rather than being absorbed by the body. Treatments for hydrocephalus normally involve a surgical procedure to implant a thin tube into the brain that helps drain away the liquid. Cerebral palsy, a life-long condition, affects movement and...

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Amy

Amy

Amy (33) lives in the Swansea Valley with her husband and two children. She was a totally carefree young girl, but Amy now lives with the incurable condition of endometriosis. Endometriosis is a chronic condition that impacts around 1.5 million women. Endometriosis can affect women of any age, including teenagers. It’s a long-term condition that can have a significant impact on an individual’s life, such as painful periods, nausea, painful intercourse, and fertility challenges. These symptoms...

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Jules

Jules

Jules Godden is master trainer & Co-ordinator for Gwent of the Education Programmes for Patients (EPP). She is passionate about patients taking ownership of their conditions and health professionals truly listening and trusting their patient. Jules’ patient journey:My story started back in 1998, when I had major knee surgery to reconnect my ligaments and cartilage using a donor. This was my sixth leg operation; it would not be my last. The surgery was brutal; I was very unwell indeed....

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James

James

I’m James Barnett Despite kidney problems from birth, I count myself as becoming a kidney patient at age 24 when I went for a routine health screening with my GP. Despite having no symptoms, I was diagnosed with End Stage Renal Failure and referred to UHW Cardiff where I was soon put on Peritoneal Dialysis (CAPD) in 2008. In 2009 I received the amazing gift of a kidney transplant which, after a bumpy road, including several bouts of rejection and a diagnosis and successful treatment for...

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Barbara

Barbara

  Barbara Chidgey is the founder, chair, and driver of the Wales-based charity, Daring to Dream which supports the emotional health and wellbeing of adult patients, living with physical illness, in Wales. As part of her work with the charity, she also leads the charity’s annual online music festival, Lleswyl. She’s currently working on her professional doctoral degree within Cardiff Met Uni and is a patient advocate for the Bevan Commission. Having lived with 2 chronic conditions for...

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Helen

Helen

I’m Helen Presdee-Jones and I’ve been a renal patient since I was 16. After almost a year on peritoneal dialysis I received my first kidney transplant, which fortunately lasted almost 20 years. I waited 5 years for my second kidney transplant, and for 4 of those years I was on a mix of peritoneal and haemodialysis. Thankfully, my second kidney transplant is still going strong after 2.5 years. Unfortunately, I’ve experienced a few significant (and rare) side effects of taking...

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Lowri

Lowri

I am Lowri Smith. I was diagnosed with a congenital heart condition at eight months old and went on to have open-heart surgery three times before I was sixteen. One of those surgeries - when I was two years old - was to fit an artificial mitral valve. Since then, I have been taking warfarin.  At the beginning of the pandemic, I was given a self-test machine to check my own warfarin levels – this gives me a lot more freedom because I don’t need to visit my GP for blood tests as often as before....

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Amy

Amy

Last year we shared with you Amy’s story. A vivacious, courageous, and enthusiastic young cardiac patient. Amy was a joy and privilege to get to know. Tragically Amy passed away in June 2021. She and her family remain very much in our thoughts and prayers. Amy was determined to raise awareness of the need for supporting the emotional health and wellbeing of young cardiac patients, understanding through her own experiences, the difference in their needs to those of other generations. She...

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Neil

Neil

Swansea-born Neil Hopper is 44 years old, and a Vascular Surgeon. He lives with his wife and two children in Cornwall, UK. Neil graduated with degrees in Anatomical Science and Medicine from the University of Wales College of Medicine, completing his postgraduate surgical training on the Welsh Higher Surgical training scheme. Following his MD in surgery he undertook a fellowship in Vascular Surgery in Sydney, Australia, gaining extensive additional experience of open vascular surgery and in...

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Cardiology nurses discuss the emotional impact for patients living with chronic conditions

Cardiology nurses discuss the emotional impact for patients living with chronic conditions

Adult Congenital Heart Disease (ACHD) is a lifelong chronic heart condition. Many of the adult survivors have undergone multiple surgeries, interventions, treatments, and investigations throughout their lives, spending long periods of time in hospital. The impact of this is huge and lasting for both patients and their families. Being an inpatient or having to make multiple trips to a hospital, either as a patient or a visitor can have a considerable bearing on an individual’s emotional and...

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Lesley

Lesley

Speaking to Lesley Meek is a humbling experience. Throughout her life she has spent more time in hospital than anyone should have to. Yet she has learnt to face adversity and remains positive and is a great supporter of Daring to Dream which makes a positive contribution to the emotional health and wellbeing of patients and their families. Lesley’s struggle began in 1966, born prematurely with a heart condition. Her parents were told she would not survive. She spent the first two years of her...

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Harmoni Cymru on B1

Harmoni Cymru on B1

Music is such a powerful way to provoke memories, emotions, and lift our spirits. We had been able to arrange weekly musical interludes with Harmoni Cymru for patients on Ward B1 in the Cardiothoracic Directorate. Patients just loved them! Amidst patient feedback comments were: “It just brightened the day, cheered us up and put a smile on our faces” Another patient said “Absolutely made my day. Both young ladies were brilliant and the lady with violin could make it talk.” “They brought a ray...

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