Patient Voices #BreathlessNotVoiceless

Julie Royle

“I felt isolated and deserted because I had PH and no-one knew what it was”

 
Julie Royle is 58 and lives in Blakely, Manchester. She was diagnosed with pulmonary hypertension in May 2012.

“After three years of seeing my usual doctor with symptoms of breathlessness, he wasn’t available on one occasion so I happened to see another, who looked through my notes and could see that something was wrong. That’s when things started to move, but it still took five months from being referred for tests to be told I had pulmonary hypertension.

The day they told me was my birthday, and that was the day my life changed. I just thought ‘my life’s over’. I thought I could have six months, one year, two years, maybe more… but my life was over, what the hell was I going to do?

At first, PH stopped me doing everything and I made a decision to retire from my job as a teacher, even though I didn’t feel ready psychologically.

At my worst, I couldn’t move from my chair to the toilet without nearly passing out.

When I was diagnosed I thought ‘why do I deserve this?’ Why do I look ok, but inside, I’m dying? And I didn’t know about it for so long.

I felt isolated and deserted by the world because I had PH, and no-one knew what it was. Nobody looked at me like I was ill. It was very hard to explain to people.

I’ve gone through a lot of treatment, from a nebuliser that helped me to inhale medication to a line that delivered drugs straight to my heart. I’m now on oral tablets, which makes things easier.

The fact that I’m still here to see things going on, that makes me happy. And the fact I can breathe makes me happy. But I’m not happy, fully in myself, because I have this shadow with me all the time. I know none of us know when we’re going to die, but it’s like I’ve been given a life sentence because it’s never going to go away. I think about it every day.”