Patient Voices #BreathlessNotVoiceless

Claire Jones

“The thing I worry about most is my finances”

Claire Jones, 43, lives in Tonypandy, South Wales. She was diagnosed with pulmonary hypertension in 2013.

“Looking back, I think I was showing symptoms of pulmonary hypertension for about 15 years before I was diagnosed, mostly breathlessness. But I just put it down to being overweight, unfit, and smoking.

In the summer of 2012 I went to see my GP because of fluid retention and suspecting heart issues, he sent me for a chest x-ray. I was then referred to a cardiologist and it was that point that pulmonary hypertension (PH) was mentioned as a possibility, but it meant nothing to me as I’d never heard of it.

I know they say you shouldn’t use ‘Dr Google’ but I did, and I’m glad I did my research, because when the diagnosis was confirmed it meant I was prepared. I was told my prognosis wasn’t good and went straight onto an intravenous line that delivers drugs straight to my heart.

I’m treated at a specialist centre in London and travel to an outreach clinic in Bristol too. As the condition progresses they keep adding drugs to keep me stable. I know it will come to a point where they can’t keep giving me drugs though.

The thing I struggle with the most is walking. If there’s any kind of distance involved I’d really struggle which is why my car is so important to me. I live in a hilly area and wouldn’t be able to walk to a bus stop, so without it, I’d be housebound.

I try not to let PH affect the quality of my life, but obviously it does have some impact on certain things such as walking long distances and strenuous activities. I still try to do most things, they just take me a little longer to complete.

I still work as a piano tuner and appeared on a Channel Five programme called ‘On Benefits’ earlier this year talking about why I choose to keep working even though I’ve got such a serious illness. It’s because I feel better when I work. If you sit at home doing nothing you can overthink things, which is when depression can set in.

But the thing I worry about most is finances. Because I am self-employed, I’m not entitled to sick pay. So, when I need to have time off work because I’m not well, I worry about where the money will come from.”