There are only approximately 7000 known sufferers in the UK. It does not discriminate age, race or gender. However, studies prove one of the forms of PH (Idiopathic Pulmonary Arterial Hypertension) actually occurs four times more frequently in women, especially around 30's or 40's.

Due to PH being so relatively rare, patients need to be treated in a specialist NHS hospital, of which there are only 8 available covering all of UK. There are currently 12 approved therapies to prolong life expectancy, and patients are given different medications depending on the severity and/cause.

Usual symptoms of PH are: Breathlessness (especially climbing stairs or walking up inclines); Extreme tiredness (fatigue); Headaches; Weight gain; Swelling (particularly the tummy area, legs and ankles); Heart palpitations; Chest tightening/pain; Dizzyness; Fainting.

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2nd February 2015, the day seemed like any other week day really. I was asked to run a simple errand for my workplace for extra office supplies to complete a £multi-million business tender presentation. So off I went, however I never actually made it in Tesco supermarket as I collapsed and blacked out at the main entrance! I woke up in the recovery position, confused and groggy with security, store managers and staff wrapping me up with layers of blankets and telling me not to move the ambulance was on its way. 

At Bolton Hospital A&E I was asked so many questions and had lots of different people milling around me. I felt irritated by the medics badgering me; ashamed at the thought of complete strangers staring at me lying on the floor at Tesco (presumably thinking I was a drunken bat!); and panicked how was I going to explain to work why I hadn't returned to help on such a massively important tender. Lots of random tests were done on me and all sorts of weird results were coming back. I couldn't understand what all the fuss was about. I had a dreadful lingering chest infection from Christmas that I was still struggling to get over for the last 5 weeks, but they were not convinced this was simply bronchial problems. My husband, Dave, finally arrived at the hospital after racing up the M6 from Birmingham to get to me. His face dropped when he saw me with a grey face, strapped up to heart monitors and waiting on a corridor ready to go for a chest x-ray. Instantly the guilt hit me for worrying him. Hours later, a senior doctor told me I was a bit of a puzzler for him as my results were very odd and my heart was a funny shape (enlarged on the right hand side). I was discharged by evening but told to take it easy until a new hospital appointment came through to see a cardiologist to investigate the heart issue further.

During the next 7 weeks I was sent for loads more hospital tests by the cardiologist for x-rays, scans and the like. Meanwhile, each week I was feeling more fatigued, frighteningly breathless, and my stomach, legs and feet became swollen red and puffy... I was starting to get really worried now but the straw that broke the camels back was seeing the word 'URGENT' on my medical file, yet still there was no official diagnosis. By the end of March, I was having more black out type moments, migraines, heart palpitations, work was becoming impossible to concentrate at and be productive. I couldn't even manage walking up a slight incline to the take my two boys to school. This was getting really serious, I was so scared.

At my last appointment at Bolton for an MRI Scan I was told I couldn't leave and had to go straight to a different ward. For 3 hours I waited, with no one able to tell me anything. Finally, a cardiology consultant I'd never met before breezed in asked how my injections were going and that I would soon be getting transferred to the care of Royal Hallamshire hospital in Sheffield specialising in my condition. He promptly stood up and led me to his office door ... (Woah! back up a bit Doctor! What injections are you talking about? What condition was I supposed to have?). He mumbled something about Pulmonary Hypertension, wished me well, shook my hand, and somehow there I was in the hospital corridor confused but relieved to have a diagnosis finally - even though I didn't even know what it was yet I would look on the internet. Google did not give me good news. In fact reading up on PH was nothing short of horrific. There was no cure!!! I was dying!!! But I am only 34!!! I'm a mummy!!! I'm not a bad person, what did I do to deserve this???

Dave and I couldn't even bring ourselves to talk about it to each other. We were trying to cope in the only way we knew how. Dave was burying his head in the sand, he decided that Bolton hospital had made a mistake and Royal Hallamshire hospital will confirm that. Meanwhile, I was so embarrassed and terrified by how much my body was getting weaker and stubbornly refused to tell my nearest and dearest, I wanted to protect them from the awful developments, even protect myself from further heartache I suppose.

The following weeks went by in a complete, agonisingly long blur. My health continued to further deteriorate at a shocking rate, like I was going 10mph in a 40 zone. To the point I had to give up my 17 year career as a sales executive. Very shortly followed by my husband who had quit his job to become my full time carer. The Royal Hallamshire hospital appointment finally arrived in the May. After a long day of various heart and lung tests we were told the shattering developments that I had the rarest form of PH, called Idiopathic Pulmonary Arterial Hypertension and it was devastatingly life limiting. 

We eventually found the courage to seek help and share with our loved ones the sad news. It was hard but the best thing we could have done as this is not a journey we could continue alone. We desperately needed support - we were in a complete mess emotionally and financially. In just a few months since my famous Tesco fainting incident my normal, simple, happy life with my loving husband and beautiful boys (Lucas, aged 9 & Dominic, 6) came to a grinding stop. I was now grieving for all my future hopes and dreams I am going to miss out on. I even planned my own funeral arrangements and final wishes!

Thankfully in June-15, I started on a combination of very expensive therapies to slow down deterioration. I had a permanent hickman line inserted in my chest which delivers intravenous medication 24/7 direct to my heart via a battery operated syringe drive. I now take up to 15+ tablets too. My kitchen cupboards are bursting with more medicines and sterile equipment than food - it has become a pharmacy! But we do not care I need it, this treatment is keeping me alive for that bit longer. The realistic outlook is I am going to need a wheelchair and oxygen at some point soon. I am due an assessment at Wythenshawe Hospital, South Manchester (February 2016), they specialise in double lung transplants. Organ transplantation is my only hope without a cure. 

We still do not know why I have PH (we may never know). I could have it due auto-immune or hormonal reasons; more probable it could be a dormant familial gene has somehow been triggered causing an insidious genetic mutation. The diagnosis of this disease is still very raw and I am yet to accept the drastic and aggressive changes that seem to be happening to me. I admit I am so angry this was misdiagnosed by my GP for years! The frustration and humiliation at being ignored or "fobbed off" time and time again. Had I been diagnosed years earlier and started treatment sooner then my life expectancy would have increased by a few more years. 

Writing my story has been incredibly hard and emotional for me, I hope you understand. I do not tell you this to attention seek, I want to explain in my own words what this condition is and how it can affect PH sufferers (physically, emotionally and financially).  I am passionate about doing my best to make a difference for an extremely worthwhile cause and also put a little positivity and focus back into my life. I feel so strongly this terrible heart & lung condition deserves the recognition of other serious, life limiting health issues.

Please help me raise money for PULMONARY HYPERTENSION UK (PHA UK) to find that all important cure. They need any financial help, no matter how small or large. Dig deep! Lift those sofa cushions! Anything you can spare. In the meantime, I will try to keep smiling and stay positive for my little boys. Their mummy is a PHighter!