Former counsellor Nerys Jones was told she had pulmonary hypertension in April 2021, a decade after her symptoms began. Here, the 68-year-old describes her difficult journey to diagnosis and how she is adjusting to the impact on her life.

“Over ten years ago, I started coughing and having difficulty breathing when climbing stairs and inclines or hills. I was diagnosed with asthma, and two chest x-rays showed lung scarring and a slightly enlarged heart, but I was told there was nothing to worry about. I was too frightened to ask further questions.

I was given inhalers which made no difference and my cough, and my breathing difficulties, became worse. Eventually, with a swollen foot, I was checked for deep vein thrombosis – but even after several blood tests I was told that everything was fine.

In early 2020, I pleaded with my GP for an endoscopy (a procedure that uses a camera to look inside the body via the throat) because I thought my cough was to do with reflux, and I had lost weight.

The endoscopy, which was looking for cancer, was clear – but a CT scan showed pulmonary fibrosis. The planned referral to a respiratory consultant never happened because of covid.

At great expense, I saw a private functional doctor who treated me for small intestinal bacterial overgrowth and reflux, but my breathing became much worse over the months.

In desperation, after my legs, ankles and feet became swollen with water retention, I spoke to a new GP in March 2021. This is when things finally started moving.

I was admitted to the acute ward at my local hospital and after lots of tests, I was officially diagnosed with scleroderma, pulmonary fibrosis and pulmonary hypertension.

Finally, the seriousness of my symptoms had been recognised, and I was eventually transferred to a specialist PH centre in Sheffield.

I was frightened by the diagnosis and what I read via Google, but I joined the PHA UK and various Facebook groups and read many positive stories. The staff at Sheffield were all amazing and so helpful, and it was a turning point in my PH.

Although my medication is starting to make breathing easier, I still panic when I cough or get out of breath from walking too far, and it takes me a while to get my breathing back on track.

I’m supported totally by my lovely husband Phil, who does so much for me every day. He takes on all on the tasks I’d have done, such as washing and ironing, and I could not survive without him. 

Our lives are much more restricted, with Phil having to do so much over the last few years.

Being on oxygen 24/7 affects everything, although we are working out how to manage it at home and when we go out.

I’m determined to keep doing some of the activities we enjoy such as gardening, looking around other gardens that have limited inclines, and going out for coffee and cake – although we do have to check disabled toilet facilities first because of my water tablets.   

Phil and I have two lovely daughters and five grandsons, but it’s difficult to visit them as it’s a four-hour journey and I’d need to organise oxygen supply.

I’ve now got a blue badge for my car which is useful, although I haven’t driven for months. I’m hoping to soon though, as I do feel I’ve lost my independence.

Other people can’t really understand my PH and the effect it has on both my psychological and physical well-being. I’ve always been the one to help others and now I feel I’m a burden, especially to my husband. Some days I’m positive, but on others I’m weepy and down. We both are.

We’re having to get used to people looking at me with my oxygen. If I have the opportunity, I tell them why I’m on it as I really want to raise the profile of PH so that others get a diagnosis much quicker than I did.”