I was diagnosed with the autoimmune disease Systemic Lupus Erythematosus (SLE) in 2002 at the age of 21 and had minimal rheumatoid flareups. In 2015 I was diagnosed with another autoimmune disease, Systemic Scleroderma. The two autoimmune diseases are collectively known as Mixed Connective Tissue Disease (MCTD) which in turn, caused Pulmonary Arterial Hypertension (PAH).

In the months leading up to diagnosis, I was increasingly becoming breathless and had feelings of discomfort on daily dog walks at ever decreasing distances. I was admitted to my local hospital and within two weeks, I deteriorated and admitted to the Intensive Care Unit (ICU) with heart failure. After researching all that she could, my wife suggested to doctors that I could additionally have Scleroderma causing PAH and at this point, I was diagnosed! I was transferred to a PH Specialist Centre a few hours away from home. I stayed for three months, supported by my wife for the whole duration who visited me daily and stayed in the patient’s accommodation, with family visiting at weekends.

I had the WHO functional class of Four (This is the most severe class of PH. It describes how the patient may suffer from symptoms even at rest) and spent the first month going from bed to chair only. Within the first two months I was admitted to ICU on three occasions. After three months, I was discharged with a Hickman Line which was inserted into my heart and connected to a pump containing the medication to help relax my blood vessels. After two nights at home, unfortunately, the line became infected with MRSA and I was admitted back into ICU at my local hospital and transferred back to the PH Specialist Centre. I stayed here for another month and the decision was made to remove my Hickman Line and instead I was discharged with a Nebuliser containing the same medication.

My life changed drastically - I went from being a Training and Recruitment Manager, to being unable to work and claiming sickness benefit and Personal Independence Payment (PIP). Over the next two years, I became self-employed before going back into full-time, permanent employment. Nearly ten years on, I have been working at Shaw Trust for the last three and a half years and I am now a Learning and Development Trainer and Apprenticeship Lead. 

Today, my PAH is stable and have a WHO functional class of Two with shortness of breath doing normal activities, taking daily medications to relax blood vessels and to delay disease progression. At the beginning, acceptance was difficult but now, progressing into my tenth year, it is how PAH affects me mentally with the feeling of burden that it has on my wife and family.

Throughout my time with PAH, I have been supported immensely with the invaluable expertise from the team at Pulmonary Hypertension Association UK (PHA UK) who are the only charity in the UK supporting those with PH (PHA UK homepage).

My advice for people who have been diagnosed PH is not to ‘Dr Google’ and to seek accurate and reliable information. Accepting and adjusting to PH can be challenging. At the start of my journey, I accessed Talking Therapies on several occasions and Cognitive Behavioural Therapy. It is important to talk to those in your circle, if they don’t know, they don’t know; but it was also important for me to speak with professionals to help ‘offload’ the things in my head and to manage my thoughts and feelings.

Personally, my sporting days are behind me regardless, and I exercise now by going on walks. I may not be able to go on long walks, but I can manage shorter distances, have a rest and go again. I have found new hobbies and interests to keep me active with my allotment which is a five-minute walk from my home. I often visit just to sit for a bit of ‘head space’ and mindfulness. A quote from a favourite film, Ferris Buller’s Day Off, “Life moves pretty fast. If you don't stop and look around once in a while, you could miss it.”