Liz Gibbs, 50, lives in Gloucestershire with her partner and two of her eight children. Following the shock of her PAH diagnosis at the end of 2023, she is now learning to adapt to life with the disease – and she wanted to share her story to help others coming to terms with it too.

Story shared April 2024

“I started getting out of breath in early 2021 and I couldn’t understand what was going on. It took me a year to get an appointment with a cardiologist.

At first, my local hospital thought it was gallbladder problems. But doctors discovered I had a large hole in my heart, which I was born with, and apparently it should have closed over – but it clearly didn’t.

I was referred for a procedure to close it, and at the same time I had lots of tests, which showed my heart was enlarged. This led to an urgent right heart catheter, and I was diagnosed with pulmonary arterial hypertension in November 2023.

I had never heard of it, and I didn’t know what it was. I thought I was going to hospital to have a hole closure and that would solve the problems I was having. I never expected to be told I had PAH, and I thought my life was over.

I was a healthy lady running around after eight children and 13 grandchildren, and then this seemed to come from nowhere.

The care I’ve had has been amazing, from both my PH nurse and my cardiologist, and speaking to a psychologist about things is helping. I’m feeling a lot better knowing I’ve always got people to call, and I have a lot of trust in my medical team.

The medication has helped; for example, I no longer feel faint or have swollen ankles and legs, and I’ve started to do a little more.

Things are still unpredictable though. I can have a good day and then a bad day, or I can have two good days and then a bad day. I never really know how I’m going to feel when I wake up in the morning, but at least I am able to sleep now. At one stage, I wasn’t sleeping because I was so scared I was going to die, but now I sleep for eight hours a night.

My family have all been amazing, but I’m not the woman I used to be. I was the one who did everything for everybody else and now they have to do it for me. The diagnosis of PAH has been life-changing; not just for me, but for the family too.

Ian, my partner, had to give up his job to become a full-time carer for me, and he does so much to help. He does a lot of the housework and things I can’t do so much now, and I’ve taught him how to cook.

We’ve got a Cocker Spaniel, Lola, and even she helps me by bringing me the post when it comes through the door!

My family get it, but sometimes people don’t understand why I can’t do things because I look so well. I’ve even been asked if I really am ill because it’s something you can’t see.

I’m finding ways of adapting to life with PAH so I can still do some of the things I enjoy. I do little walks, and we take the dog out. I do a little bit of shopping, holding on to the trolley, and I can still do things with the grandchildren if we’re in the house. But Ian does have a habit of telling me off because I overdo it. He will say, ‘Sit down, you can’t do what you used to do’. I do forget sometimes.

My social life has definitely been affected, and I haven’t tried going to a party yet, because I think I’d be too tired. I stay in the house most of the time, and the family come to me instead.

We are due to go on holiday this year – only in the UK, because I don’t want to push myself by going on an aeroplane yet –  but it’s something to look forward to.

My family, my hospital, my cardiologist, my PH nurse, my partner, my children, and my dog, all help me to keep positive. It’s important not to give up, because there is so much help out there.”