A patient’s experience of IPF from UK

The internet is where I tend to get most of my information on IPF although there isn’t much information on the disease as it is quite rare.

My diagnosis took about two months from when I originally visited my doctor with breathing problems. The main wait was the delay to see the respiratory consultant. I was first diagnosed with IPF in 2004 by a consultant at the Royal Brompton hospital following an x-ray and endoscopy. My diagnosis took about two months from when I originally visited my doctor with breathing problems. The main wait was the delay to see the respiratory consultant. I had been experiencing breathlessness. I’ve always been quite fit and even gave up smoking as I was conscious of becoming more breathless, but this didn’t make a difference. I’m now in a position some eight years after diagnosis where I cannot walk a great distance, probably only about 30 meters or so.

Also, I’m not good at standing up, as I start falling onto people after a while. I’m sitting down and taking oxygen talking to you now. Even though I’ve been diagnosed with sleep apnoea I am still allowed to drive, but will probably have to make the decision soon that I shouldn’t really be driving. IPF has had a big effect on me. I’m in pain and I’m weary and exhausted all the time. Idle to the point that if I need something, I’m more likely to ask my wife to get it for me as it is so hard to do things for myself. This makes me a burden on her and she does get frustrated sometimes which is totally understandable.The truth is though that I do need help from people now due to my IPF. I can still climb the stairs, but I need oxygen. I have oxygen canisters in four places around the house and am basically on oxygen 24 hours a day. I have been for the past two years and it makes a major difference. I’m on eight litres a minute at the moment, which has been increased from four litres a minute over the past few months. This seems to be an indication that I’m deteriorating a bit. My life has seen a drastic change to be honest. I can’t fly anymore, we have a holiday home in France and we anticipated spending a lot of time out there since we retired four years ago, but this has been a non-starter really. We retired quite late, I was 67 when we sold the business and I’m 71 now. I have grandchildren and used to enjoy playing with them, but can’t anymore. I am basically a cabbage, I watch TV and sleep. My routine is to get up, have a shower and get dressed. I used to play golf and when I started to have problems I got a little electric buggy which allowed me to carry on for about another two years. I had to give it up though as I couldn’t walk from the buggy to the green any longer. The internet is where I tend to get most of my information on IPF although there isn’t much information on the disease as it is quite rare. What has helped me the most with my condition is oxygen – this has made a major difference to how I cope with the disease.