Wayne's perspective

I had always planned to work until state pension age. Up until four years ago, there were no problems, but since being diagnosed with PH, every year it got harder.

I was diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) in December 2018 after not feeling right for a long time. I’m on oral medication, and there’s a possibility of surgery as a last resort. I’m always tired and out of breath, and I’m always cold.

Since the age of 20, I’ve worked in a factory that makes paints and varnishes, doing a lot of lifting and carrying. It was a very physical job; I would have to lift between two and three tonnes of powder a day. There’s a glass roof, so it was like a greenhouse, making it especially tough in the summer months.

When I was first diagnosed with CTEPH, I had 13 weeks off sick, luckily on full pay. I then went back on a phased return, increasing my hours gradually over a period of eight weeks until I was back to full time.

It felt alright at first, but it then started getting harder and harder. My bosses made allowances at the beginning, for example limiting how much I had to lift, but because I looked ok - the illness can’t be ‘seen’ - they forgot about it all and it was soon back to the same routine.

They tried to move me onto night shifts and that made me really poorly. I was in a routine with my medication, and it turned my body upside down.

My colleagues, who are also friends because I’ve worked with them for so long, could see that I was struggling. They helped me a lot, but there was only so much they could do.

One really hot day last summer, I had a medical assessment at work which showed my blood pressure was sky high. I told the assessor I’d been struggling to breathe because of the heat, and he said I needed a lung function test, but I’d have to see my doctor. I did, and was signed off sick.

Kathy and I had to sit down and have a discussion about what to do from there.

After I’d been off for three months, and my full pay went down to Statutory Sick Pay, my employers asked me to decide between coming back to work, or leaving on ill health grounds. Going part-time wasn’t an option financially.

In December 2022, after being on sick leave for six months, I officially left work on ill health retirement. I had come to the decision that I just couldn’t do that job anymore. They couldn’t offer me anything other than heavy lifting, so there was no other choice.

It’s taking me a while to process everything that’s happened, but I have definitely felt better physically since finishing work. I take the dog for a walk every day, I’ve got a season ticket for my football team, and Kathy encourages me to get out to see my dad or go to the shops.

I need the encouragement, the pushing sometimes, to do something and keep my body going. I’m lacking a bit in motivation, but I think I’ll want to go out more in the summer, as I struggle with the cold.

I do feel a sense of relief after finishing work. I’m not getting up at 5am, with my body still aching from the day before, feeling unable to even get my socks on.

My advice to anyone in a similar situation to me is to talk about it. Talk to people at work, talk to your managers, and let them know how you feel and what’s going on. You can’t ‘see’ PH, so they won’t know otherwise.

And talk to your PH team for advice on it all too; they’ve been brilliant with me. I didn’t like talking to people about it, so I kept it to myself, but I wish I hadn’t.”