Richard Kitchener will always remember when he was diagnosed with Chronic Thromoboembolic Pulmonary Hypertension (CTEPH) and had life-changing surgery to give him his future. Here, the 52-year-old from Shepshed near Loughborough looks back on his journey.

“I’m a gardener, and it was when work began picking up again after the winter season that I began to feel lethargic and breathless.

I was always physically fit – I would regularly go out on my bike for 50 miles – and I just knew something wasn’t right.

My doctor told me I had hay fever, even though I’d never had it in my life. I was coughing too, and I ended up having my lungs x-rayed, but they came back clear.

I struggled on through the summer and when autumn came, hay fever season went – but the symptoms were getting worse. Another trip to the doctors resulted in an asthma diagnosis and an inhaler.

I went back again and my GP said he didn’t know what to do with me, as I was a fit person, and all the tests were coming back clear.  He asked me what I felt like, and I said I felt like I was dying.

He decided the next step should be a heart scan, and I was told it would be a wait of six to seven weeks. However, the day after, I had a call telling me there was a cancellation and the very next day, just 48 hours after the referral, I went to the hospital for what I thought was a routine appointment.

My GP said he didn’t know what to do with me, as I was a fit person, and all the tests were coming back clear

The scan revealed the right side of my heart was twice the size it should be, and I was admitted straight away. A CT scan showed multiple blood clots and I was told by the consultant that it was so serious that I shouldn’t have walked into the hospital – in fact, I shouldn’t still be alive.

I stayed in my local hospital on blood thinners and a few weeks later I was seen at Papworth. After various tests, I was told there was good news – the type of pulmonary hypertension I had was called CTEPH, and it could be treated.

When the operation was mentioned, I knew straight away it was what I wanted to do. I didn’t feel like there was any other option. I underwent a pulmonary endarterectomy which removed all of the clots and I am making a full recovery.

I do often wonder how different things may have been had I not got the cancellation appointment for the heart scan. But it’s onwards and upwards now, and as a family we’re all looking to the future.”

Sue’s view

Sue Kitchener, Richard’s wife, said: “It was a relief to finally get a diagnosis as we knew it wasn’t hay fever or asthma, but you can’t force the doctors to tell you what it is if they don’t know.

It was a rollercoaster after the heart scan, but we just had to get on with it. And once we were under the care of Papworth we knew we were in the best hands. Now Richard’s had the operation and it all went well, we feel like we can look forward, after putting our lives on hold.”

Richard with his wife Sue