Shelley Higham was diagnosed with PH at the end of 2019 and she is still trying to get her head around such a complex disease.
Here, the mother-of-two from Lancashire reflects on her diagnosis and explains how it has altered her outlook on life.

“I was working as a retail assistant when I started noticing something wasn’t right. I was getting breathless, but I tried to ignore it, and I put off going to the doctors.  But then I started getting chest pains and would be gasping for air when I went to bed at night.

At first, I was told it was pneumonia, but my legs started swelling and when the chest pains got bad at work, my employers called an ambulance. Tests showed my legs were full of fluid, which was rising to my chest.

CT scans then revealed pulmonary hypertension and heart failure. It was December 2019, close to Christmas, and by this time I had been experiencing symptoms for a year.

It was heart-breaking to be told I had an incurable disease, and one that I had never heard of. The more I read about it, the more shocking it was, and I started to wonder how much time I had left. Would it be weeks, months, or years?  It was scary, and it still is now.

I take two types of oral medication and have to use oxygen for 16 hours a day. I’m also on a BiPAP (ventilator) machine overnight.

I had to leave my job, which was a hard thing to do, but I just couldn’t be walking up and down stairs or operating the tills.

PH does affect me quite a lot because I feel like I am restricted when I go out. I have two children, Callum (21) and Jack (12), and when they go out with my husband Gareth I often have to stay at home because the oxygen makes it so difficult. I can’t walk far, because I know I will get out of breath.

It does make me feel quite down and I get upset because I feel like I can’t do anything. I’m only 41 and I feel like I should be out doing stuff, but I can’t.

I’m lucky to have a lot of support from my family. My parents only live around the corner and my husband is fantastic. He does everything around the house, and I couldn’t be without him.

I do find it hard to explain to people what my illness is. No-one has heard of it and even I find it hard to get my head around sometimes.

I don’t know why I got PH. You hear about lung conditions and associate them with people who smoke, and I have never smoked in my life.

When I was born, one of my pulmonary arteries was closing to the point of a pinhead and I had an operation to open that up, but as the years went on, I had no problems. I was fine with my both of my pregnancies too, but it is possible my PH could be linked to the issues I had as a baby.

The hardest thing about having PH is not being able to live a ‘normal’ life. I have to plan everything around the oxygen, and I do feel restricted. I miss the simple things like days out with my friends, going for walks, or going shopping.

It can be quite isolating because you feel like you are different from everyone else.

I do worry that people are going to stare when I go out with my oxygen. I’m 41 years old and I have never seen a person my age walking around a supermarket, or in town, with an oxygen cannula round their nose.

I worry about the future too. I’m really worried that I won’t be here when my children get married, or when they have children of their own. I worry I won’t grow old with my husband.

Having PH has changed my outlook on life, and I never take anything for granted now. I appreciate what I have got, and although I don’t know if I will ever work again, money is nothing. As long as I have got love and my family and friends, that is all I need.”

Shelley is sharing her story to mark PH Awareness Week 2021:

“It’s important that more people understand what it’s like to have PH. It isn’t just a condition for old people, or people who smoke; it is a condition that can affect anyone at any age, and it should be spoken about more.”