This week it’s Pulmonary Hypertension Awareness Week. Pulmonary Hypertension (PH) is the disease I had that resulted in me having to have my heart and double lung transplant. A transplant was the only route left after having had all the end stage specialist medications available for PH.
Having my transplant has always felt like an aternative treatment for my PH – yes a drastic one and not a cure. It’s a treatment that comes with huge risks and swaps one set of medical problems for another, but it’s a treatment that’s enabled a much better quality of life for me and has given me five extra years with my family so far – years I just didn’t have when I was terminally ill and suffering with end stage disease.
PH is high blood pressures in the lungs, which eventually causes damage to both the heart and lungs. It is an incurable, life limiting and terminal disease, which impacts enormously on the quality of life of PH sufferers. It is also a very rare and complicated disease, as there are different types of PH, different causes and differing treatments according to type. Treatment is very specialised and the specialist medication can only be prescribed from one of eight specialist centres in the UK, which includes Great Ormand St childrens’ hospital, as PH affects babies, children and people of all ages.
It’s also one of those ‘invisible diseases’ in many cases – well no-one can actually see your heart and lungs like they can a broken leg can they? As it’s rare and invisible, it can be very isolating for a PH sufferer; it’s often misunderstood, often mistaken for just ‘high blood pressure’ and even most medics don’t understand it or its complex treatments. Hence there’s a great need to raise awareness.
PH can be very difficult to diagnose too, it’s often mistaken for other conditions such as asthma, it often takes a few years for a patient to be diagnosed properly. In my own case it took nearly fifteen years! I’d never even heard of PH, let alone its signs and symptoms. The signs and symptoms are listed on the poster below:
Why would anyone be bothered about understanding more about PH when it’s so rare and only 7000 people on the UK are diagnosed with it? Why would anybody even care?
Well, I wish I’d known all about it and heard of it. If only. It may have prevented me being diagnosed as being in ‘end stage’ disease and being given only a few years to live. I could have perhaps received the specialised treatments earlier. You never know what’s round the next corner and it can happen to anyone.
Also, as it’s an invisible disease, PH can be very isolating. People kept telling me how well I looked, they didn’t quite understand the real impact it was having on my heart and lungs and how severely it was affecting my daily life. Every time I ended up in a general hospital, it was terrifying too, as most medics had never heard of it or if they had, they had no proper understanding of the various types of PH and the specialised medications. Raising awareness, therefore, is so important.
PH will always be a part of my journey in life; a part of my story; a part of where and who I am today. Despite how awful and scary this disease has been, there’s been some positive things to come out of my journey with PH too. I think I’m stronger and richer for it in many ways. It’s given me a real appreciation to be mindful and live in the moment and not dwell on the past or the future, but just to live for today.
Most of all it’s brought me many new and long lasting friendships. It still does. It never stops surprising me, how many people touch my life because of PH. Then there is the kindness and goodwill of so many people that have helped and supported me to overcome so much. They still do. The medical teams that have supported me, both my PH and transplant teams have also become like second families and Royal Papworth, my hospital, is like a second home.
I always say that if raising awareness of PH helps just one person, then all the campaigning and every minute of raising awareness is worth it.