I was not told that I had been diagnosed with COPD for nearly two years

Eddie, 60, a retired chief technologist, is living with chronic obstructive pulmonary disease (COPD) and bronchiectasis. Here he shares his diagnosis journey, and how not being properly informed that he was diagnosed with COPD meant he went without any treatment or support for nearly two years.

Eddie at Snowdon
Eddie at Snowdon, in Wales

The consultant described my lungs as a tree with falling leaves

I remember the consultant talking to me about my lungs. When it came to my diagnosis of COPD, I didn’t put two and two together, because instead of saying what I had, he was describing my lungs as a tree. I had gone to hospital because I had heart problems, but after some tests I was referred to a respiratory team. They did a spirometry test, and in 2015 I was diagnosed with severe sleep apnoea.

He said to me, “Normally the leaves start falling off when you’re in your eighties. And once the leaves fall off, Eddie, they don’t come back.” He said, “Unfortunately you’re fifty-five, your leaves have already started falling off now, when they should have been falling off in your seventies and eighties.” I thought this was a good metaphor at the time, as it helped me visualise what was happening to me. I kind of knew that he meant my lungs were dying or not functioning, but I didn’t know why.

The problem was that the consultant focused on my diagnosis of severe sleep apnoea, but what wasn’t made clear to me is that I had also just been diagnosed with COPD and bronchiectasis. During that consultation he did ask me if I could leave work, retire early. I said I couldn’t. He told me that if I didn’t change my lifestyle I wouldn’t reach 60. I had no real idea that he was talking about COPD.

In the end, I found out that I had COPD by chance. I was waiting for some arm surgery in private care when my GP reviewed my records and told me that I had to inform my surgeon and anaesthetist that I had COPD, because this put me at risk. This was news to me. It turned out that the hospital had diagnosed me a year and three quarters beforehand. It upsets me to know that my GP and I could have known earlier. My GP is really good, as are the rest at my practice. It would be good if my GP had full access to all of the information from the hospitals I have attended.

I wasn’t given access to treatment after my diagnosis

After being told I had sleep apnoea, I was given a CPAP (continuous positive airway pressure therapy) machine, which is normally used to help people breathe when they sleep. I remember the consultant saying, “the CPAP machine will be good therapy for your lungs”. But I didn’t have access to any other treatments that worked for COPD.

I had some really bad experiences during that time. I wasn’t managing my condition well. I woke up one night and I ripped my CPAP mask off because I couldn’t breathe.  I was sat on the edge of the bed gasping for breath. I thought I was going to die. It feels like you’re drowning. It’s a terrible sensation because you’re trying to breathe more, but you can’t breathe. You’re gasping for air. It lasted for ages. 

Eddie, at his workplace before his retirement

Now I know I have COPD, I’m on triple therapy (three medications). I know how my body feels and if I am having a bad time, I use my reliever inhaler more – I always have it with me, next to the CPAP machine.

At the end of 2016, I was put on the waiting list for pulmonary rehabilitation (PR) by my GP, which I started in 2017, about two years after I had been diagnosed. The physio on the course had my hospital file so I asked her when my diagnosis had first been recorded. She told me that the records showed that they confirmed a COPD and bronchiectasis diagnosis on my files as far back as 2015. I just couldn’t believe no one had told me. 

Two years after my diagnosis, I started pulmonary rehabilitation (PR)

At my first PR session, I was really embarrassed.  When I turned up, I thought, ‘should I be here?’ I was only in my fifties and it was a small group where everyone looked a lot older than me. I was still working, and I still felt fit. I thought, ‘am I a fraud?  Why am I here?’ These people seemed really ill. I did the walking test and I thought, ‘I can do this quite okay, and there are people here who are really ill and I’m not ill’.  But now I know that I was ill.

The really big thing I learnt there was exercise, manageable exercise. They show you simple specific exercises to do sitting down, but some of the best advice I was given on the course was about how to manage my day-to-day life. For instance, the physiotherapist who ran the class suggested casually leaning against a wall if I was giving a presentation as the audience won’t know if I’m resting or leaning on the shopping trolley at the supermarket so there’s less pressure on my body when I’m shopping for food.

In the last couple of years, because of my respiratory problem and my lifestyle, I piled weight on so I was having trouble walking, breathing. So, as well as the PR, I started walking. I’ve lost nine kilos in the last two months and I have noticed a difference in my breathing.

I learnt so much from PR, to do with things that can help me get about and be active.  It was brilliant, I would recommend it, and walking, to anyone living with a lung condition.

You have to learn to spot your good days and bad days

How I feel varies from day to day. In February, I had my annual spirometry test at the GP. My lungs have deteriorated now, down from fifty-three to thirty-seven percent. I have to keep an eye on it, try and slow it down a bit, see if maintaining a healthy lifestyle will slow down the deterioration. 

But I look at myself and I don’t look ill. I do struggle to breathe, but I cope with it. You’ve got to learn to spot your good days and your bad days, and seek support when you need it.

You’ve got to manage the day-to-day of your condition yourself and know when to ask for help. There’s lots of support groups online, I’d encourage anyone diagnosed to find a network that helps them – you’re not alone.  

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.

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.

Comments

Looking at the NICE guidelines 2018 I should have been considered for COPD about 20 years before I was first drugged and another +/-10 years before I heard the term COPD. Referring to his deterioration he writes ". I have to keep an eye on it, try and slow it down a bit" but no advice is given in UK sources about the HOW. With an estimated 3.2 million sufferers the NHS is overwhelmed.
It really is terminal disease Copd and I have had so many flare ups and meds I still haven't had any support at all besides deteriating since last January and believe me this is severe Neglect to ppl who have raised kds and loved to work my life is on edge this past 12 months I am not coping and my doctors say I'm complex

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18 November 2020