Patient Voices #BreathlessNotVoiceless

Jacky Hallesy

“It took 13 years for my husband to get his diagnosis”

Jacky Hallesy’s husband Barrie Smith was diagnosed with PH in 2012, 13 years after reporting his symptoms.

For years, GPs said that Barrie’s breathlessness was asthma, but none of the treatment was working and we become more and more concerned as his condition began to deteriorate.

The eventual diagnosis in 2012 came completely by chance. In 2010, we moved to Devon from our home in Oxford. There we saw a new GP who also treated Barrie for asthma but offered an alternative steroid medication.

Unfortunately, the steroid medication caused Barrie to have blurred vision and the GP referred him to the eye clinic at our local hospital but again, they drew a blank and referred him to haematology for further tests. Haematology came up with nothing. We felt helpless at times, but we were reassured that the nurses and doctors were doing everything they could to try to find out what was wrong.

It wasn’t until Barrie was referred to the cardiology unit and they did an echo that a student nurse had written down ‘pulmonary hypertension’ next to a question mark in her notes. We then attended Papworth Hospital for tests where it was confirmed Barrie had pulmonary hypertension.

Having seen the student’s notes before Barrie’s official diagnosis, and having googled the rare condition beforehand, I was fearful and upset that Barrie would soon die. However, it was apparent that Barrie was relieved. After 13 years spent worrying what was wrong with his body, he could finally put a name to the condition that had been troubling him all this time.

The specialist centres provide a crucial service for patients, but we should also do more to raise awareness of this serious condition among GPs and healthcare workers out in the community. I believe this will help reduce the time it takes to diagnose someone with pulmonary hypertension.