Emma's story Cardiff Mum looks back on seven years that changed her life.
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Cardiff mum's life has changed dramatically since she first started suffering from symptoms of pulmonary hypertension seven years ago. Emma Llewellyn-Bishop, 35, of Cardiff, tells us that what she's learned through her experience of coping with the condition is to always “listen to your heart”. It took two years for Emma to be given a definite diagnosis of PH and since then, as well as being a single mum to Rhiannon, she has had to deal with adjusting from being extremely fit and active to needing to use a mobility scooter to get out and about. Then her mum Sheila, who had moved in to support her, sadly died a year ago. Emma says she has had lot of wellintentioned, but conflicting, advice from others but feels the best way forward is to trust yourself. She said: "It's really hard and, especially when I was first diagnosed, I felt at times that I couldn't cope. People tell you to do things this way, or that way, but at the end of the day you're living with your decisions and you know what's right for you. You need to listen to your heart.”
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As a young woman, Emma was a dance student and an au pair and then worked as a head groom at a busy stables, looking after show jumping horses. She also was a regular user of her local gym. In fact, she rarely visited her GP. All of that changed in 2008 when Emma began suffering from breathlessness and felt "like her insides were being crushed". Her condition worsened and she knew there was something seriously wrong when even her duvet felt “heavy”. Another problem with the rhythm of her heart meant that she was eventually admitted to the University Hospital of Wales' cardiology unit, but it took months before she got any answers as to what was causing her loss of breath and blackouts. It wasn't until she was referred to the specialist PH centre at London's Hammersmith Hospital that a provisional diagnosis of PH was confirmed. The news came as a relief in the sense that she felt, "it wasn't just me," but understanding the potential effects of the condition was a lot to deal with. Eventually unable to get upstairs at home, Emma needed to move in
to adapted accommodation with a stair lift. Emma's current treatment regime consists of taking Sildenafil and Macitentan, plus medication for water retention, and she uses oxygen daily. She relies on her mobility scooter to take Rhiannon to and from school, an hour away, and taxis if she needs to go further afield. She would love to learn to drive but can’t afford to. Of her daughter, who turned seven in January, she said: "Rhiannon is brilliant and helps me a lot around the house, with things like getting the laundry out of the washing machine. She keeps me going. I want to see her grow up.” Also a support to Emma are PHA UK and the friends she’s made, and is regularly in touch with, through the online forum. The charity Marie Curie has also helped her access reflexology treatment and assisted in other ways. Emma says, because she “looks well” she has sometimes had unkind reactions from people while on her scooter but has learned to shrug the negativity off. “I don’t worry about what other people think,” she said.
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