Dad’s Delayed Diagnosis –There are only Idiopathic Reasons

Stephen Morgan-Hyland shares his story about his Dad and how delayed and misdiagnosis can cut short the life of our loved ones.

Action for Pulmonary Fibrosis > Living with Pulmonary Fibrosis > Personal stories > Dad’s Delayed Diagnosis –There are only Idiopathic Reasons

Remembering Tony Hyland – 1 May 1949 to 22 May 2017 – by Stephen Morgan-Hyland

With me, walking in the Peak District – 2015

I didn’t expect a Saturday text message; Dad wasn’t due back from Italy until the following week. ‘Came home early as weather not too great and I was feeling unwell’, it read. That was 13 May, this year. The following morning an ambulance took Dad to a local hospital, with him suffering severe breathing difficulties. Five days later and a week after that Saturday text message, the last one he sent to me, he transferred hospitals to an Intensive Care unit; by now in an induced coma. Dad died on Monday 22 May of multiple organ failure and severe pulmonary fibrosis.

Text messages are typically two-a-penny. Receive, read, discard. Repeat. That final text message from Dad I will hold on to and treasure, as much as the final words we shared minutes before him being placed on a ventilator. For the record, I told him to ‘… keep carrying the flame’; he smiled and replied ‘…see you on the other side’. I think he knew that only I would be on the other side.

That final text message carries meaning beyond sentimentality. Dad went on to say ‘…also had a letter from respiratory doctor who feels my condition probably is fibrosis – need to get in to see GP to discuss’.

Dad was suffering with Idiopathic Pulmonary Fibrosis (IPF), and he received his diagnosis nine days before he died. Interrogation by a consultant and registrars, during his short stay in hospital, of x-rays dating back five years revealed evidence of advancing IPF. By the time Dad received a positive IPF diagnosis his condition was so advanced that no treatment could prolong his life. It was the end. The cause of his IPF? Unknown, of course. Dad was an amateur carpenter and spent decades planing, sanding, routering. He was smoker too, for a long time. He worked in some damp office spaces.

How was it that x-rays, over at least a period of five years, showed evidence of IPF advancing yet it was not picked up? The answer is not straightforward, but has its roots in Dad’s medical history and this leading to misdiagnosis year-on-year. My Dad died aged 68, but suffered a serious heart attack when only 47. He survived due to quick thinking first-responders and unquestionably excellent intensive care treatment. A few years later he underwent a triple heart by-pass, and survived. His long history of cardiovascular disease and susceptibility to infection led GPs year-on-year to conclude his wintertime shortness of breath and acute coughing were caused by chest infections.

Dad did get chest infections without question, but the IPF was there all along; hidden, missed and worsening.

I am not angry about this, not at all, and I am not looking to point a finger of blame. My Dad died of an incurable disease, and probably survived for as long as could be expected. What is more, he could have died 21 years ago. I don’t feel cheated out of any time with Dad. We were very close, had an excellent relationship and saw lots of each other including in that period when he was suffering with IPF. Dad never wanted his cardiovascular illness to beat him, and it didn’t. I find it ironic that he received excellent care over two decades to keep his cardiovascular illness under control and in the end, he died of a disease that had escaped diagnosis; at least until the very end.

Whilst I am not an expert on the advancement of IPF treatments, I know two things. There remains no cure, but treatments now offer prospects for a longer more fulfilling life. For that reason alone, early diagnosis is essential. As important is that 20, 30 and 40 somethings, of which I am one (the latter cohort), lead incredibly busy lives, with increasingly wide-spread wings. Many of my friends might not look back on a preceding five years and be as confident in saying that they hadn’t missed out. Whilst living with a terminal illness brings a whole new chapter of upheaval and difficulty, early diagnosis allows for treatment and the most to be made of time remaining.

Jude with his Grandad – 2017

Dads final text message concluded ‘…will definitely be there for Jude’s christening’. My son Jude was christened a month after Dad died. I read out his final text message that day to our family and friends, to illustrate the fragility of life. Whilst Dad wasn’t there in person, his spirit was and I’m carrying the flame for him. I delight in his living long enough to meet his grandson. I know my way around a camera, and I could take 10,000 images and not get a better shot than Jude with his Grandad; both looking into the lens held by the most important man in their lives.