Posted on 15/11/2018

Living with lung disease: when breathing isn’t easy

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Living with lung disease: when breathing isn’t easy

Chronic obstructive pulmonary disease (COPD) is a lung condition that results in breathing problems. It’s increasingly common in the UK, and primarily caused by smoking.

Richard Hubbard is a 67-year-old widower who was diagnosed with COPD a couple of years ago. We spoke to Richard about what it’s like to live with lung disease, which causes breathing problems, and how his COPD symptoms are affecting his quality of life and wellbeing.

The low down on lung disease: cause and effects

Richard has had a tough and stressful few years. He lost his beloved wife to a devastating illness, and was then, himself, diagnosed with a long-term health condition: chronic obstructive pulmonary disease (COPD), specifically emphysema.

Chronic obstructive pulmonary disease (COPD) occurs when the lungs are irreparably damaged. There are two types of COPD: chronic bronchitis and emphysema. The latter occurs when the tiny air sacs within the lungs, called alveoli, are damaged. These air sacs are essential to our breathing, as it is here that oxygen moves into the blood and carbon dioxide diffuses out of the blood. When alveoli are damaged, they break and cause holes to develop in the lungs. Carbon dioxide gets trapped in the damaged sections of lung and these areas over-inflate as you breathe, which causes discomfort and means the healthy part of the lung is compacted.

"I’ve had to give up working now."

Richard is a lover of bowls, music and being in the garden. A family man, with a large and supportive network of family and close friends, Richard feels lucky despite the fact his condition has affected his independence.

“I was married to Elizabeth for 40 years. Sadly, our future together was cut short. She passed away 2 years ago from a very short battle with motor neurone disease. Together we have twin daughters, Rebecca and Rachael, aged 39. The girls have given us 3 grandchildren, Kiera Alex and Oliver. Last year, I became a great grandad to Eliza. I have a brother and a sister. My mum is also still alive and at the age of 93 is fitter than us all! I need a lot of support now that I’m on my own. My family and good friends are amazing. I feel I see them more now than I did before my illness.

"My family and friends now understand emphysema and they see how much it affects my life, but most people don’t understand just how debilitating it is.”

The primary cause of COPD is smoking. Smoking releases poisonous chemicals into the body. As well as putting the smoker at higher risks of stroke and heart disease, these chemicals irritate the lungs, causing inflammation and reducing the capacity of the lungs over time. There are other possible causes of COPD though, including exposure to chemicals or other irritants, such as dust. Men are more likely to develop COPD, which may be linked to them being more likely to work in industries where they are exposed to lung irritants. Richard believes his working life definitely played a part in him developing lung disease.

“I used to smoke but stopped a long time ago. I was a chef in the army when I started my working life, and then I worked at the ‘pit’ (the coal mine). We definitely breathed in lots of dust and fumes down there - even asbestos! Following this, I was a plant fitter, repairing machinery such as diggers and bulldozers, and then decided to set up my own business as a mechanic. So, I’ve constantly been surrounded by fumes – spraying cars, exhaust fumes… I have had to give up working now and retire early. My last job before my COPD diagnosis was as a courier.”

"I’m constantly short of breath."

Symptoms of lung disease vary from person to person, but most people will experience some level of breathlessness. This can range from feeling out of breath, to finding it difficult or uncomfortable to breathe. Some people find they have excessive mucus, regular chest infections and lasting coughs. Many people also experience severe fatigue because they do not have enough oxygen in the blood. The early symptoms of lung disease may be difficult to spot, and because of this, many people are not diagnosed with COPD until they are in later stages of the condition.

“I was diagnosed with COPD in 2015 following an admission to hospital. This presented as severe breathlessness and an acute chest infection which turned into pneumonia. I was told that I have advanced emphysema, yet this was the first time I was aware I had anything wrong with me! Looking back, and now knowing what the early symptoms are, there were probably signs that I was living with lung disease but I just didn’t realise it.”

Treatment for COPD will vary depending upon the stage of the condition. There are medications to help reduce the amount of mucus or calm inflammation in the airways, and inhalers are often used to widen the airways and make breathing easier. Smokers with COPD are strongly advised to stop smoking to halt any further damage to the lungs. Quitting will also reduce the inflammation in the lungs and help relieve symptoms.

People in the early stages of COPD may also find that by embarking on an exercise regime and being as active as possible, will help their lungs to function better, reducing the symptoms of lung disease. Pulmonary rehabilitation courses are often run in local areas, and aim to get people with lung or heart problems moving, increasing their fitness and activity levels.

For some people in the advanced stages of lung disease though, like Richard, this type of exercise is pretty impossible, and it is too late to undo the damage. In these cases, a patient may be recommended surgery to improve their quality of life and help them to live longer. Richard agreed to have lung volume reduction surgery - a life-threatening operation used to treat emphysema, with many potential risks. It involves removing some of the badly affected parts of a person’s lungs so that the healthier sections of lung can function better.

“Since my diagnosis I have had multiple admissions to hospital. In May 2017, I underwent a lung volume reduction surgery to try to improve my daily living. This was successful, however, I still continue to suffer on a daily basis. Even walking from one room to the next is difficult. I’m constantly short of breath and have no energy. I have numerous inhalers to use daily but I am not on daily oxygen as it doesn’t seem to improve my blood oxygen levels.”

"There’s so much I want to do, but can’t."

Everyone has a unique experience of COPD. If it is diagnosed early on, there is a lot a person can do to help themselves, improve their condition and reduce the impact that lung disease has on their life and future. Many people are able to manage their symptoms and stop their condition getting worse. However, Richard’s condition is quite severe, so it affects his daily life in multiple ways and has led to a loss of his independence. He relies on professional and family carers, and has had to give up work and playing bowls. He uses multiple daily living aids, which are pieces of equipment designed to help him stay mobile or do daily tasks that his emphysema and breathlessness make difficult.

“My family help with every aspect of daily life, including shopping, cleaning, washing etc. I am able to cook small meals for myself. I have had some packages of care and I still have carers in to help with showering. This task is extremely difficult for me because the water takes my breath away! I have to use grab rails and a perching stool in the bathroom. I use a walking stick around the house and I have a mobility scooter for when I go out.

“COPD has changed my life in so many ways. I would have probably still been working if it wasn’t so bad. I was able to use an adapted chair in the bowls green until my lung disease got really bad, now I can’t bowl at all any more. On a typical day, I take my medication before I get out of bed, then I have my breakfast. I then slowly get dressed (this is really tiring for me!) and usually listen to the PopMaster show on Radio 2. If there’s a bowls match on I go to watch. I have my dinner and watch a quiz or Bargain Hunt. Daily life can be boring but someone comes every day to visit – be it family or friends.

“Emotionally, I do struggle. It’s very frustrating as there is so much I want to do but can’t. Having to rely on others gets me down. When I think about the future now all I can say is it’s not looking good, although I know I am very lucky to have the support I do.”

Lung disease affects everybody in different ways. Richard’s emphysema only came to light late in his life, and he is living with a number of challenges as a result of his advanced condition. Not everyone will have the same experience as Richard, but we hope this article helps raise awareness of lung disease and the conditions associated with it. Look after your lungs as best you can and if you have any symptoms you are concerned about, such as a persistent cough, slight breathlessness or mucus – go to your GP for a check-up.

The British Lung Foundation offers online information resources and a support helpline for anyone affected by a lung condition. Thank you so much to Richard for giving us an insight into life with lung disease and we wish him all the best.

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