We need more joined up thinking between heart and lung disease specialists
Phill, 66, a retired salesperson, lives in Bedworth with his wife, who acts as his carer. He has asthma, chronic obstructive pulmonary disease (COPD), atrial fibrillation (AF), and idiopathic pulmonary arterial hypertension (IPAH). Phill shares his experiences of a complex diagnosis journey for his cardiac and respiratory conditions.
The doctors thought that I was breathless because of my heart condition
From a young age I always had chest complaints and bronchitis. I was more or less off school every term with some chest infection or other. I left school at fifteen and went into the family business, working in DIY sales. But it wasn’t until the eighties, when I was 24, that I was actually diagnosed with asthma. I started to have more infections and I was getting more and more breathless. A doctor at my GP surgery that specialised in asthma saw me and told me that I was asthmatic. I was prescribed inhalers and, once I started taking them, had fewer bronchial attacks and fewer chest infections, but I was always ill with chest infections in the winter.
Around 1992, I had two or three years of being really poorly. I had pleurisy and pneumonia and ended up in hospital at one point. Whilst in hospital with pneumonia I was diagnosed with atrial fibrillation, which means that my heartbeat is irregular and often beats too fast. A particularly scary time for me was in 2008, when I had severe empyema and fluid on the lungs, which led to respiratory failure. I was seriously ill in an intensive care unit (ICU) for a while. After my time in the ICU, when I went back to work, I still wasn’t feeling fully better. I had lost a lot of weight and wasn’t able to breathe as well as I could before. The interesting thing was that my doctors knew that I’d been very poorly – my wife had been told that I wasn’t going to survive the night twice – but when I went back to see them, they thought my breathlessness symptoms were actually being caused by my heart condition.
I was referred back to a lung specialist
A few years later, in 2012, it became impossible for me to work because I was continually having trouble getting around, because of the shortness of breath I was experiencing. I went back to my doctor and told him. It was at this point that I was immediately referred to a lung specialist.
This was the second time I’d been referred to a respiratory clinic. I saw a consultant in 2008, after the hospital admission and time in ICU, but I was discharged from the clinic after three years. I remember my consultant saying something along the lines of, “Your lungs are never going to be better, and we will be seeing you again, and you will be in hospital again because of the state of your lungs”. I was not totally surprised by this because of the amount of time I was in ICU – 32 days. I was very ill and it took me a long time to recover.
The lung specialist blamed my lungs and the heart specialist blamed my heart
In 2012, the lung consultant couldn’t understand why, when I was moving round or doing anything physical, my oxygen levels would decline would seriously decline. They did further tests, and these showed that I had restrictive lung disease as well as COPD-related emphysema. But some of my breathlessness still couldn’t be explained so even more tests were done, which is when they diagnosed me with pulmonary hypertension.
At the time, the pulmonary hypertension was mild. Six months later, ultrasound tests showed it was now high. I was then referred to a cardiac specialist, who diagnosed me with a heart condition after a series of tests, including X-rays and CT scans. I monitor my oxygen and heart rate with a finger oximeter, which helps me manage my breathlessness and my heart and lung conditions better.
For years I have had an issue where my lung doctor blamed my breathlessness symptoms on my lung conditions and the heart specialist blamed my heart. One of the biggest issues in my opinion is that the specialists now are too specialist. One concentrates entirely on the lung and blanks out any outside source, but both areas are interlinked. More joined up thinking between specialists would be good.
I used to be a martial arts instructor, so it’s frustrating that I now get out of breath so easily
At the moment I am quite stable, but I still get out of breath quite easily, especially in the winter months - I have seventy six percent lung capacity. I’ve got slight fibrosis because the emphysema has actually scarred the outside of my lungs. When the temperature goes down below three degrees I can barely walk to the car. Going up and down the stairs still makes me feel out of breath. And mowing the lawn is an undertaking that my wife does now because I can’t, and it’s only a small lawn - it’s a pokey little thing. The frustrating part for me is that I used to be a martial arts instructor, used to train six days a week and was very, very fit and then I went to not being able to do anything. But you have to learn to live with it, as they say.
Luckily while being in lockdown, I’ve not had that many infections, that’s because I’ve not gone anywhere and not picked anything up from anybody. I’ve literally been in the car and that’s as far as I’ve ever been or been down the park with the dog. When we go to the supermarket, my wife drives us there and I sit in the back of the car and talk to the dog whilst she goes in shopping, and I people watch. I love people watching.
The Taskforce is calling for the introduction of a clear patient pathway for timely, accurate and complete diagnosis for everyone with breathlessness and other respiratory symptoms. Early and accurate diagnosis is critical to improve the health and wellbeing of people with lung disease. Identifying the disease at the earliest stages offers the best chance to take measures to slow its progression, which could add years to people’s lives and improve their quality of life significantly.