I thought I would lose my love of exercise but pulmonary rehabilitation helped me rediscover the joy of keeping fit
Ron, 59, lives in Lincoln and has idiopathic pulmonary fibrosis (IPF). Pulmonary rehabilitation (PR), has been a life-changing treatment for his condition. Currently being considered to be put on the waiting list for a lung transplant, Ron shares the story of his diagnosis, and how staying active improves his mood, keeps him fit and is helping him prepare for his surgery.
Suddenly, I was told I had five years left to live
It took four years to get a diagnosis. I first went to the doctor in 2011, when I noticed I had developed a persistent cough. My partner, Maxine, was worried about me. She was adamant that I needed to go and get it checked out. The doctor sent me for a chest X-ray and it came back clear, he said that there is nothing wrong with me. Because I had been a smoker in the past, he was reluctant to take my cough seriously.
But the symptoms were not going away. Two years later, Maxine convinced me to go and see a doctor again. We had moved since my first appointment, so in 2013 I went to my new GP. He gave me an inhaler in case it was asthma, but that didn’t work so to my surprise, he gave me antidepressants! The cough was still not getting any better and I noticed when I was running that I wasn’t able to do as much as usual. Once again, I went back to see my GP. He sent me for an X-ray, again it was clear, but he knew something was wrong and referred me to a specialist consultant at the local hospital. This was all very frustrating, but we, me and Maxine, knew that something wasn’t right.
Finally, on 11th April 2014, I was eventually diagnosed with scarring of the lungs, or IPF. I was one of the first people in the country to go on pirfenidone, an anti-fibrotic drug that helps slow down deterioration of the lungs. I remember when I came out of the consultation, I had switched off, all I heard was that I had three to five years left to live. On the way home, I did a web search on IPF and thought ‘oh my goodness, that’s scary’.
I do remember the consultant saying to me, “I’m going to refer you to Papworth, because they’re interested in people with fibrotic lungs and because of your age they’d be interested in talking to you.” He asked me to do a six-minute walk test. I found this to be okay, but I did not know what I was doing the test for. I’ll never forget it, because on that day I found out that I only had seventy percent of my lung capacity. The nurse said to me, “You’re on one hell of a rollercoaster, have your ups and you’ll have your downs.”
But to show you how I took it, I did a triathlon the following day. I’ll always remember coming out of the swim and my mate saying, ‘that was a poor time, you should have been out 10 minutes ago!’ to which Maxine snapped his head off, saying ‘he was told yesterday he only had 70% lung capacity!’
Pulmonary rehabilitation has taught me how to exercise with a lung condition
Before my diagnosis, I enjoyed exercise a lot. I was used to exercising, I was used to getting out of breath and punishing my body. I used to train for triathlons; in one session I would do a 25-mile cycle ride, or a two kilometre swim, and/or a run. To suddenly not be able to walk up a flight of stairs is very demoralising. I did stop exercising about 3 years ago mainly due to depression and feeling too fatigued. But I knew I had to start again and that’s about the time I started Pulmonary Rehabilitation, which I suppose re-ignited my desire to exercise.
I felt totally distressed when I went to my first pulmonary rehabilitation session at Papworth. It annoyed me that my exercise routine was changing. I looked at the exercises that I would be doing and thought ‘Oh my, is this is what I’ve come to’, I was very annoyed at my body, as I wanted to be able to do the exercises I was used to and enjoyed doing, which were a lot more gruelling than pulmonary rehabilitation.
While it was difficult for me to get used to the idea of pulmonary rehabilitation at first, Papworth has taught me how to exercise safely and within my new parameters. I do exceed them sometimes. I’ve linked my oxygen levels to my heart rate and without even looking at my oximeter I know when my oxygen levels are going down. I can look at my heart rate on my watch and know when my stats are going to be low. It’s a case of having to recognise when you’re pushing yourself, stopping, letting your lungs recover and then starting again.
There’s lots of exercises where you’ll stand on a resistance band and pull it up and there are ones where you push out with your arms and ones where you punch across your chest. They all use your muscles from your chest to your arms – it’s a bit like having weights.
Every morning, I do lots of exercises on my treadmill. I do exercises where I try and beat my distance. It may be by ten metres, it may only be by fifteen metres, but I do try. I now can’t compete against other people because that is totally out the question. I’ve learnt to live with my limitations and accept them.
I know there will come a point where I won’t be able to do it.
You’ve got to treat pulmonary rehabilitation as a medication
When I attended my last physical PR group at Papworth last year, they did a six-minute walk test and they did the sit-to-stand test. They do it before your ten classes, and they do it after to check your progress. I had a 30 percent increase in the sit-to-stand and the six-minute walk test.
That’s the crux of why they do it, so the other thing I always say to people is, “You’ve got to treat pulmonary rehab as a medication”. It’s a treatment. When she showed me the figures, you could see the difference. When I started the treatment, I had been able to complete seven sit-to-start exercises in ten seconds. At the end of it, I was able to do 10 in the same amount of time. I was also able to walk much further, which makes a big difference.
Funny enough, since the pandemic I have been doing more exercise. I do more on the treadmill and the rower. I suppose I’m different because a lot of people with IPF, they may be in their seventies or older, and they sadly haven’t got that hope of being able to have a possible lung transplant. I’m exercising to try and keep myself on the lung transplant list for as long as possible. When I’m walking or exercising it is always in the back of my mind.
Pulmonary rehabilitation at home is just as hard as doing it in a gym
At the moment PR at Papworth is virtual. There’s about 20 of us and even if we’ve got to sit down and can’t exercise as much, it’s doing us a lot of good. Maybe that’s a thing for the future, the choice to have virtual pulmonary rehab. We can’t all get to Papworth, we can’t all get to hospitals. I find PR just as hard doing it at home as I do doing it in a gym.
During lockdown I set up a buddy system with John, a close friend who has been living with IPF for over five years and who also chairs a support group in London. We do turbo training two to three times a week. He’s on his bike and I’m on my turbo trainer. I’ve got all the various exercises on my tablet and we go through them at an appropriate pace. John sets up the connection through zoom so I can see him on my tablet and he can see me on his laptop. We can talk to one another and keep each other motivated while exercising together and we’re pushing and supporting each other throughout.
It’s so important to keep your muscles and your mindset active. When I exercise I’m happy. PR keeps my mind happy, it keeps me active.
Not everyone’s like me, I know, but to me pulmonary rehabilitation is very important, so important.
The Taskforce is calling for rapid implementation of diagnostic hubs across the country to ensure that everyone can get an early and accurate diagnosis of lung disease. The sooner people get diagnosed, the sooner they can start treatments like pulmonary rehabilitation, whether through face to face classes or remote options, which need to be made more widely available to patients.