Pulmonary rehabilitation gave me hope for the future
Maggie, 63, a retired accounts manager, lives in Suffolk and has idiopathic pulmonary fibrosis (IPF). Here she describes how after waiting for over a year for a diagnosis, she was able to improve her wellbeing through pulmonary rehabilitation (PR).
I waited eighteen months for a diagnosis
For a long-time I had had a cough. I went to see my GP about it and they referred me to the hospital in 2017. The consultant I saw organised for me to have a CT scan and then a lung biopsy in March 2018. Because of the space between these tests, I wasn’t diagnosed with IPF until June 2018. That meant that I had eighteen months of no medication or treatment – during that time my condition was getting worse because I was coughing more and didn’t understand the importance of breathing properly and how to exercise safely. I understand it's important to diagnose it properly to make sure I get the best medicine for me personally, but I don't think it should have taken that long. I am now on the medication Nintedanib.
I didn’t realise that I needed to change the way I exercise to live well with IPF
After my diagnosis, I felt like I was a rabbit in headlights, I didn’t really know what was going on. I went out and bought a cross trainer because I thought that I just needed to get fit. Nobody had explained to me about how important it was to measure oxygen, and my heart rate, when exercising. I just thought I needed to keep my lungs going. And it wasn’t until a friend went to a meeting about IPF and mentioned my situation to a consultant who was speaking at the event that I realised I needed to learn more about how to exercise with IPF. The consultant said I shouldn’t be using a cross trainer because this type of exercise isn’t right for my condition.
This scared me, so I contacted one of the interstitial lung disease (ILD) nurses at the hospital who was part of the respiratory team looking after me and told her that I wanted to take part in pulmonary rehabilitation (PR). My friend had told me about PR and said I should ask to go on it because it would help me learn how to exercise safely. I was referred to PR in February 2019 and it has completely changed my life. I remember my first PR class, the teacher sat me down and said to me “I want to explain that I know you have a disease, but your lungs are huge and there's so much more there we can work with that will keep you fit.” I cried. I realised a new world had opened up for me.
PR taught me that living with a lung condition doesn’t mean that life has to stop
I did the PR programme for the six weeks. I hadn’t been on a bike for years, so it was reassuring in the PR class to be able to get back on a bike and have someone there say to me, “Right. I just want you to start off really slowly. Don’t push yourself.” They also taught me breathing exercises such as the pursed lips one, where you breathe in through your nose and then blow slowly out through pursed lips. This helps you control your breathing. I also did a lot of arm stretches, that I could do sitting down or on a machine with the weights that stretch your chest.
Fortunately, after the PR programme finished, I found a little local gym to go to and carry on what I had learnt. Before lockdown, I would go there twice a week and the trainer there – I'm fortunate that I could afford to pay for him – worked on a programme for my legs because I was told that legs are really important to keeping strong. He also helped me work on my chest - I did some boxing with him. I would never have done any of that had I not completed PR.
Because of lockdown, I’ve been working out at home. I’ve got a punch bag, some boxing gloves and some exercise bands. I have a bar up on the wall so I can do arm exercises with the bands.
Going to PR has taught me that you don’t have to go to the gym to exercise. What PR teaches you is that it doesn’t matter what you are doing or where you are doing it, as long as you are safely using the muscles in your arms, legs and around your lungs, and can control your breathing. That’s the biggest thing, knowing how to control my breathing because I used to get panicked when I got out of breath. Now, because of PR, I know how to stop and control it and how far I can push myself.
I'm on ambulatory oxygen and when I am out walking, I’ll just stop for a little minute, recharge my body and carry on. I now recognise that the feeling of not being able to breathe goes away when I stop and rest.
I now know that just because I've got a lung condition it doesn’t mean I have to stop. Hope is the one thing that PR gave me. Before completing PR, I wasn't sure what I should or shouldn’t do. It’s been a lifeline.
Making Pulmonary Rehabilitation (PR), more widely available than it is currently has significant benefits, including financial savings for the NHS and social care system. The Taskforce for Lung Health recommends that access to PR is improved so that every person with a Medical Research Council (MRC) breathlessness score of grade 2 and above is identified, referred to, and has the opportunity to complete a programme. Many face-to-face PR classes have been halted during the pandemic. The Taskforce advocates a menu-based approach, so that people are given options to access PR in the best way for them, including remote programmes.