Shelly Rouney had her pulmonary endarterectomy filmed by the BBC for ‘Surgeons: At The Edge of Life’ and it was shown on primetime television in October 2020. Here, she reflects on the unusual experience and the health challenges she has faced with her husband.

“My operation was in December 2019 so it was almost a year until it was shown on TV, and it was only then that my family realised how serious it was.

When I first got the call to ask if I would be happy with the filming, I said yes straight away, but I then started to wonder what I had done! It was daunting at first, but the film crew were absolutely brilliant, I couldn’t have asked for a better bunch. They were lovely.

They filmed in our home a few times before the operation and they were so understanding if I got upset or anything.

They followed my journey all the way through, filming me in hospital two or three times in the run-up to the surgery. They did want to film me again afterwards, to show my recovery, but COVID-19 put a stop to it. We had a video chat instead and I sent them photos.

I was happy with how it all turned out when I watched it on TV, but my husband Phil and I still cried all the way through. It was overwhelming, and to this day, I don’t think my mum has watched it.

Phil was interviewed for the programme too, and we had people recognise us out shopping, asking ‘was it you two on the telly?’

My operation was brought forward because I was diagnosed with breast cancer a few months after I was diagnosed with CTEPH. I was told I wouldn’t survive the mastectomy operation unless I had the pulmonary endarterectomy first, which is why I ended up having the surgery over Christmas. Two months later, I had my right breast removed.

I was in hospital for about two weeks for the endarterectomy and left on New Year’s Eve. Being in hospital on Christmas Day was odd, but the staff were so good. They even got us all presents.

Phil stayed with his nephew while I was in hospital as it was closer, but it was still 100 miles each way, so he only saw me in hospital a couple of times. It was hard being away from him so much.

Unbelievably, he was taken poorly himself whilst I was in hospital and the symptoms turned out to be cancer of the oesophagus. I don’t think a lot of people can believe what can happen in the space of a few months. But we have got each other through it all.

My recovery from the PTE went well. All the clots were cleared, but I do have right side heart failure. And I’m having a lot of problems as a result of the breast cancer.

But me and Phil stay positive together, knowing that I am going to live longer, whereas before it was very different. And Phil’s cancer is now in remission, so we know there are better times ahead.”

Shelly’s pulmonary endarterectomy was carried out by Dr David Jenkins, Clinical Director of Surgery at Royal Papworth Hospital. He said:

“The filming did not interfere with the operation. We are used to visitors in theatre and I have been filmed before. In addition, the documentary makers were very skilled and many of the cameras were remotely operated so the clinical team were not interrupted.

I think the programme has helped [to raise awareness of pulmonary hypertension and the pulmonary endarterectomy surgery]. Many of our patients have seen it, and others have contacted us about the surgery subsequent to the programme being aired. The more awareness the better with a rare disease. It may also help raise awareness with other health professionals too.”