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Late Diagnosis

Hello my name is Amanda and last year two major events in my life took place: I got married and then found out I had congenital heart disease.

For the 18 months before my wedding, I thought I had been going through early menopause, living a life of good and bad days with heart palpitations and constant nausea. Luckily my wedding day was a good day. I had an amazing time and we ventured off to our 10 day honeymoon in Turkey a few days after. We had a wonderful time, however there were days when I felt truly awful but I put that down to over-indulgence. On the day after we flew back to the UK my health deteriorated rapidly, I had no energy and I really struggled to breathe.
I went to hospital only to be diagnosed with a collapsed lung; the doctors were amazed that I’d flown! I guess I had become used to my aches and pains and had been treating it as just another bad period. After numerous scans, x-rays and tests the doctors were explaining to me the seriousness of my condition when they said mid-sentence the words “you obviously know about your heart condition.”

I paused them there and simply asked “What heart condition?”, shocked as they then delivered the news to me that I had a large hole in between the chambers, a leaky valve and the right side of the heart had become enlarged, all of which I’d had since birth.

I knew nothing about congenital heart disease! I thought back through my life and wondered why I’d never picked this up. At two years old my mother was told I had a heart murmur, but that I’d grow out of it and then whilst doing exercise at school I used to go the brightest red, however this was something that my friends and I laughed about. 

To find out more about the disease I went online and googled it. I had found the British Heart Foundation website very informative, but I wanted something more specific; I wanted to talk to people like me. That’s when I found The Somerville Foundation website.

The forums were my saviour. I found people, like me, who’d had a very late diagnosis after being hospitalised for another problem, many of whom were the same age and some who had suffered strokes due to their undiagnosed heart conditions. I felt so lucky that it had not been like that for me. 

These people, along with my family, became my rocks; they were a constant source of advice and support, giving me reassurance, explaining confusing terms to me and most importantly telling me what would happen at each test, which made me feel so much better because they’d already been through it. 

In March this year, I underwent open heart surgery to mend the 5cm hole, repair the valve and amputate some of the dead tissue around my heart. The surgery went well and I was home after a week, ready to start cardiac rehab.

During rehab I spoke a lot to the people in the forum on The Somerville Foundation website, as I’d been feeling very alone. They told me what I was feeling was totally normal and we discussed not only the physical but mental impact of having a heart condition from birth.

I want to say a MASSIVE thank you to The Somerville Foundation for facilitating the forum and providing the information and support that I needed. For those of you who are putting up with good and bad days don’t stop until you get the diagnosis and treatment that makes every day a good day. 

Written by Amanda Jolly and Tamsyn Protheroe.

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