Leslie Ward’s IPF story

Leslie Ward, 82yrs, Fife

 

In my 60’s, I was enjoying life and felt very fit. Everyone remarked on how young I looked. I had never been ill. My wife and I owned a hotel in the Highlands of Scotland which involved extremely busy summer months but we were able to travel extensively in the winter.

Then in 2004 I started feeling breathless, especially when walking uphill. I had a chest infection and was sent for an x-ray and then a CT scan. A diagnosis of Bronchiectasis came shortly after. In 2006 we decided to retire and moved to Fife to be nearer family. Another CT scan followed in 2009 and the diagnosis was still Bronchiectasis. In 2012 I felt increasingly ill and asked my GP if he would send me for further tests on my lungs but he refused saying it was just the Bronchiectasis. I knew it was more serious so I insisted on a referral to a consultant using the private health insurance I had.

It can’t be serious, the follow-up appointment isn’t for three weeks

The consultant sent me for another CT scan and I was then sent a follow up appointment for three weeks later. We were relieved as we thought “so it can’t be lung cancer or we would have been referred earlier.” I was told I had a condition called Idiopathic Pulmonary Fibrosis (IPF) which was progressive and that there was no treatment available. We had never heard of IPF nor had anyone else we spoke to and we were not given any indication as to life expectancy (initially we thought it might mean a slow decline like ageing) and so like everyone else we looked it up on the internet. It was a complete shock to read that life expectancy is roughly 2–3 years.

Isolation

Visits to Ninewells hospital commenced and although I found the clinical care very good no psychological care or advice was available. My wife and I felt isolated. Seeing patients in the clinic waiting room on oxygen therapy was frightening. We had so many questions the hospital staff or internet couldn’t answer.

After much research in October 2012 we heard about a new drug called Pirfenidone. A professor at the Mater Hospital in Dublin offered to treat me on his monitoring programme for the drug if I was prepared to travel there for tests every three months. I still attended Ninewells and was able to have my diagnostic breathing tests there. In 2013 the Scottish Medical Council approved Pirfenidone and I have been prescribed from Ninewells hospital since.

Six years since diagnosis I am still here and still taking Pirfenidone with no side effects from the drug. After an acute exacerbation which put me in hospital at Christmas 2014 I had to start using oxygen therapy. It has been a slow decline since but we still manage to travel and enjoyed a month’s cruise to the Caribbean last December.

I have smoked but gave up over 40 years ago. When people see me with my oxygen tubes they tend to think “It’s his own fault he shouldn’t have smoked” but not everyone who has IPF has been a smoker in the past. I used to be a carpenter in my younger days and a respiratory nurse once told me they see a lot of carpenters.

Support groups

My wife Maureen campaigned for a support group without success. Then the Pharmacist at Ninewells hospital arranged a meeting for IPF’ers with the charity Action for Pulmonary Fibrosis, which gave us the advice, support and funding to get started. Everyone at the Fife and Tayside support group feels that this plays a vital role in their treatment.