No cure,
always hope
I
t was January 2008 and after a fantastic family Christmas it was time for me to return to college. I was very excited to see my friends and get back to studying for my A-Levels, as I wanted to go to university to study music. We decided to go bowling one lunch break and on the walk back to class, I suddenly felt really ill. My chest was pounding, I had severe breathlessness and I fainted. I was rushed to my local hospital and then transferred to one in London. I had already been a respiratory patient there for ten years and at every consultation I complained of suffering with severe breathlessness, but each time I was told my asthma was getting worse and a new inhaler was prescribed. On this particular day, I was put into the intensive care unit and once
SPRING 2018 emphasis 22
stabilised, was moved to the respiratory ward. I had a right heart catheter, ECG, MRI scans, multiple blood tests and x-rays. We were told the hole in the heart I was born with hadn’t closed up and it had led to pulmonary hypertension with Eisenmenger’s syndrome. It was incurable. We were shocked, and not ready for this devastating news, as we had previously been told my hole had closed up. I was given a short prognosis and told they couldn’t close up the hole, as it would kill me instantly. The thought I might die, before I was even 18, was too much to bear. I felt like my world had come crashing down. I cried and cried and felt my dreams were all shattered. My consultant then said my only cure was a double lung and heart transplant, but that I had many tablets to try before
I needed to start worrying about that. I immediately started Sildenafil and soon noticed an improvement. My parents stayed in hotels near to the hospital throughout and family and friends visited over the months. I remember speaking to a lovely lady who was in the bed opposite me, and to cheer ourselves up we would score each male doctor or nurse out of ten!
Coming to terms with my diagnosis
None of my family and friends had heard of pulmonary hypertension, so we were given leaflets to explain it. We went on Google, which sent fear into us, but I became a member of the PHA UK who introduced me to the online support group where other people had PH too. It was a relief to speak to others
