Howard was diagnosed with IPF four years ago early in 2014, and since then, has been having ‘breathing’ exercises with a singing tutor.
Howard was in a band in the 60s, and still has his guitar at home. He’s still working in the computer software development industry. He lived in Germany and Austria for 20 years, and has two children and four grandchildren. He looked after his own mother, who had dementia for 10 years but she passed away in 2013. Howard describes himself as very quiet under normal circumstances, but will intervene when people are talking rubbish. He can be single-minded about certain things that he really cares about.
What were the signs that you might have IPF? What has your journey been so far?
Signs that all was not well began with a visit to my GP with a persistent cough, bad heartburn and indigestion. He gave me tablets for the heartburn saying it was acid reflux, probably caused by the removal of my gall bladder a couple of years previously, and told me to come back in a couple of weeks if the cough was persisting. The heartburn stopped but the cough continued, and on my next appointment, listening to my chest again he said he was referring me to a lung specialist at Torbay Hospital. At Torbay I had an X-ray and then a CT scan, and then got the news that I probably had IPF, but this would need to be confirmed with a lung biopsy which would need to be carried out in Plymouth’s Derriford hospital.
Through a chance meeting with the director of a choir in February 2015 I started with breathing exercises, which improved my lung capacity quite rapidly. Unfortunately due to holidays and other circumstances I had to have a break from them in the summer, and my lung capacity dropped back.
Torbay hospital is not a specialist centre and could not prescribe either of the two NICE approved drugs so I was referred to Exeter’s RD and E hospital. After further tests in Exeter I was prescribed Pirfenidone, and warned about all the side effects. Luckily I haven’t had any side effects as yet, but do use factor 50 sun cream every morning without fail.
Exeter is also a Research Hospital and actively encourages participation in clinical trials, so in February of this year (2016) I was asked if I’d like to go on a double blind trial for a new drug – the Estair trial. I’m one of 300 patients worldwide, with just 6 in Exeter, and a few more in another UK centre. This involves a weekly injection of the drug, or a placebo – I don’t know which.
I still take the Pirfenidone and of course my breathing exercises.
My lung function tests have continued to improve, and in fact I feel a lot better now than I did two years ago. I don’t get so tired as I used to and have a lot more energy.
How has your family reacted?
I have two children and four grandchildren. I still work full-time and am also a councillor on the local town council as well as being a trustee of a couple of charities in the health sector. I can’t physically do as much as I would like so my son comes and cuts the grass in the garden, and I have a cleaner who comes in to keep the house clean. The children are very concerned and are very supportive, but I’m very independent minded. They keep a watchful eye on things, but who knows what the future will bring.
How does it affect you day to day?
I have to avoid walking up hills or doing strenuous exercise, so I have to plan where I’m going, where I’m going to park, especially if I have to do a lot of talking in meetings etc.
What would your advice be to anyone with IPF?
My advice to anyone else with IPF is to talk to the medical team and join the support groups. Make sure you get referred to a specialist centre, or a specialist nurse if possible. Talk to others, it can be very re-assuring and put away quite a few fears – most people are in a state of shock when they are told that they have IPF. l know I was. Finally, do not believe everything you read on the internet, use it as a rough guide. Also always check with your consultant before trying anything new.
How do you feel about the choir?
The choir session in London was a great idea, as it reaffirmed for me that my decision to have regular breathing exercises was absolutely right – the exercises and techniques we were taught that weekend were identical to the ones I had been doing. The singing helps with controlling your breath, and making best use of your lungs, allowing you to recover very quickly if you get breathless.
Why it’s so important to raise awareness?
I feel that we all need to raise awareness about IPF and its effects on us all as it can hit family’s damn hard especially when it affects family finances and the ability to earn a living. Since the publicity around the awareness campaign I have been approached by several people saying they had the same sort of problems but their doctors had not been able to offer any advice or treatment, and I was able to point them to the right people to find out more. It’s also important to try and get governments and pharmaceutical companies to try and find a cure, if it’s possible.