Welcome to Windsor Pulmonary Fibrosis Support Group
Joining a pulmonary fibrosis support group can make a real difference to your life.
Make new friends who know what you’re going through, and learn more about living with pulmonary fibrosis.
What happens at a support group?
We put on a programme of guest speakers and activities. There’s also time to chat to other people over a tea or coffee. That’s the best way to find out about how other people cope and mange their condition.
Newly diagnosed with Pulmonary Fibrosis?
Everyone experiences a diagnosis of pulmonary fibrosis differently. However you are feeling, you are not alone, we have information and support to help.
What is Pulmonary Fibrosis?
Pulmonary fibrosis (lung scarring) describes a group of interstitial lung diseases where the lungs become progressively stiffer and smaller, eventually leading to low oxygen levels in the blood. Pulmonary fibrosis (PF) affects around 70,000 people in the UK.
Symptoms of pulmonary fibrosis
Scar tissue or fibrosis in the lungs impairs how well the alveoli can transfer oxygen that is breathed in, eventually leading to low oxygen levels in the blood. As the amount of scar tissue increases, the lung capacity becomes smaller.
Symptoms of pulmonary fibrosis may include:
- shortness of breath, which may occur with exercise initially but it worsens over time
- a persistent cough
- rounded and swollen finger-tips (finger clubbing)
- crackles in your lungs that sound like Velcro being pulled – heard by your doctor using a stethoscope
Shortness of breath
Breathlessness can appear early or late in the development of PF. People often write off shortness of breath, putting it down to lack of fitness and ageing, but it should be checked out.
In the early stages of PF, you may be breathless when you do strenuous exercise or walking up hills or stairs. As the disease progresses, you may notice breathlessness with milder activities such as walking, washing, dressing, talking and eating.
Cough and crackles over the lungs
A persistent dry and tickly cough is a common symptom of pulmonary fibrosis. Sometimes the cough can produce sticky sputum. Often patients visit their GP with a cough. On listening to the lungs, the GP hears dry or Velcro-type crackles that are a strong indicator of PF.
Read advice on managing a cough.
Rounded and swollen finger tips
Finger clubbing – the widening and rounding of the fingernails or toenails – is a less common pulmonary fibrosis symptom. At the moment we don’t know why some patients develop this and others don’t.
Other pulmonary fibrosis symptoms may include tiredness (often referred to as fatigue) or unintentional weight loss.
Some people develop pulmonary hypertension, where there is increased blood pressure within the arteries of the lungs. You may have chest pains, a racing heartbeat and swelling of your ankles or legs. Your medical team is likely to carry out tests for pulmonary hypertension.
If the pulmonary fibrosis is related to an autoimmune disease, such as rheumatoid arthritis or scleroderma (systemic sclerosis), you may also experience symptoms of that condition – for example, problems with joints, skin, or muscles.
Causes of pulmonary fibrosis
Pulmonary fibrosis occurs when collagen (scar tissue, often known as ‘fibrosis’) accumulates within the delicate gas-exchanging air sacs (alveoli) of the lungs. As a result, the lungs become stiffer and smaller. This eventually results in low oxygen levels in the blood.
Pulmonary fibrosis conditions are classified by their causes.
Doctors understand the causes of hypersensitivity pneumonitis, asbestosis and pulmonary fibrosis caused by autoimmune diseases, such as rheumatoid arthritis and systemic sclerosis (scleroderma). Occasionally, some medications, can cause drug-induced pulmonary fibrosis. But it is not yet clear why some people develop these conditions, while others don’t.
There is currently no known cause of idiopathic pulmonary fibrosis.
There are 23 specialist Interstitial Lung Disease (ILD) centres in the UK, with doctors, nurses, and allied health professionals dedicated to the treatment of pulmonary fibrosis.
Treatment depends on the types and causes of pulmonary fibrosis. There are drug treatments for IPF and treatments for other types of PF. New treatments are being developed through clinical trials all the time.
There are a number of treatments to help with symptom control. These include:
- breathlessness managementand pulmonary rehabilitation
- oxygen therapy– if blood oxygen levels fall with exercise or when resting
- coughsuppressants and mucolytics to aid sputum clearance
- management of anxiety and panic attacks
Your doctor may suggest assessment by palliative and supportive care specialists for helping with symptom control and psychological support.
If you smoke, there is help to stop smoking.
For some people, referral for lung transplantation may be discussed.
There are a number of novel therapies being evaluated in clinical trials for IPF. Please discuss with your specialist if you are interested in finding out about clinical trials.
Pulmonary fibrosis conditions:
- COVID-19-related pulmonary fibrosis
- Drug-induced pulmonary fibrosis
- Hypersensitivity pneumonitis
- Idiopathic pulmonary fibrosis
- Rheumatoid arthritis-ILD
- Systemic sclerosis
Outlook and prognosis
In some people, scarring of the lungs develops quickly, while in others it happens over a longer period of time. We don’t yet know why. Currently it is not possible to predict at the time of diagnosis how an individual person’s PF will behave.
What to expect from your care
After your diagnosis, you’ll have regular follow-up appointments with your medical team. They will explore your symptoms and discuss with you whether your treatment needs to change.
Windsor Support Group Management
Chairman — Geoff Gardner
Secretary — Liz Robertson
Treasurer — Rob Dean (ILD Nurse Specialist for EastBerkshire AIR Team)