Patient Voices #BreathlessNotVoiceless

Pauline Harrison

“I had real problems when it came to accessing financial support”

Pauline Harrison, 42, lives in Milton of Leys, Inverness.

“I was diagnosed with pulmonary hypertension in 2010, when I was seven months pregnant with my little boy Ciaran.

I knew there was something wrong right from the beginning but no-one would believe me. I saw four different doctors and it felt like I was banging my head against a wall.

The fifth doctor I saw thought I must have been in labour because I was so breathless, and this finally led to me having tests and being referred to the Scottish Pulmonary Vascular Disease Unit at the Golden Jubilee Hospital in Glasgow.

The next day, at seven months pregnant, I was given the news that I had pulmonary hypertension. I cried 24/7. I felt angry. I had always looked after myself, so why this?

A week after I was diagnosed, my son was delivered early by caesarean section.

I had to give up my job as a nurse auxiliary and I had real problems when it came to accessing financial support through Personal Independence Payments (PIP). I’ve had to go through the courts to get the benefits I’m entitled to.

I have been diagnosed with clinical depression, which I take medication for. I’ve been to counselling a few times too. The PH is always there in the back of my mind. It feels like I’m sitting on death row, that’s the only way I can describe it.

Fatigue is the hardest thing. It does sometimes get the better of me, and it does affect my quality of life. I try not to let the condition control me, but it does sometimes.

I can’t even walk my boy to school because there’s a steep hill in the way. It’s everyday things like that, which most people take for granted.

Because it’s a rare disease, people can be quite ignorant. I’m not taking anything away from well-known conditions like cancer, but pulmonary hypertension is a serious illness too – and more people need to know about it.”