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Having a long-term lung condition doesn’t change who you are, but you have to learn to adapt

Tricia was diagnosed with hypersensitivity pneumonitis 7 ½ years ago. She shares what it’s like living with a long-term lung condition and how she’s had to make adjustments to her life.

My symptoms started when I had bronchitis. I had several bouts throughout 2012. I had an appointment with a respiratory consultant, and he carried out a number of tests including an X-ray and CT scan. I was told I had pulmonary fibrosis.

I went home to digest this information and decided to take a second opinion. I went to The Royal Brompton Hospital and underwent a series of tests including a bronchoscopy. This time I was told I had hypersensitivity pneumonitis, a condition that falls under the umbrella term of pulmonary fibrosis. That was 7 ½ years ago.

At this point, my condition was manageable. I had a bit of a cough but thought I was OK; I didn’t really notice much of a change.

I didn’t realise I was slowly deteriorating. It creeps up on you

But in the last four years my condition has accelerated. My breathing has worsened, and I was told I needed oxygen at night as my oxygen saturation levels were dropping at night-time. It was a huge shock when the oxygen contractor machine arrived – it all became real.

I then started to have breathing difficulties when doing everyday things like walking and shopping and simple housework. It was suggested I should have ambulatory oxygen from a portable machine. Now I am on it a lot of the time.

I didn’t realise I was slowly deteriorating. It creeps up on you. It affects my day to day life, and I have had to adjust to what is now normal. Things I would have normally said yes to I have to think about, like being out all day. I need to think about my oxygen and if I will have sufficient battery life.

I want to learn to live with my condition. I’m still the same person. I just need to make adjustments. Your condition shouldn’t define who you are.

Some days are easier than others. You have to learn to look after yourself – take your drugs and take advantage of pulmonary rehabilitation when it is offered. Keep active and look after yourself by eating well.

It sometimes feels like people with respiratory conditions are forgotten

I haven’t had a hospital appointment for my condition since November 2019 because of COVID-19. I had a remote consultation in May and am due for another in November.  That means it will be 12 months without tests. So much can change in that time.

I am still shielding as my consultants have told me I need to. I don’t want to take any chances and am being strict with the guidance – after all, my health is the most important thing. I do things to keep busy like writing, reading and knitting and watching TV of course.

During lockdown I wrote a booklet called Living with Lung Disease. I wanted to write something to explain to people what it is like because unless you live with it you have no idea.

Talking to someone who’s going through the same things you do is like going abroad and finding someone who speaks the same language as you. They understand how you feel and the things you go through on a daily, weekly and monthly basis. Of course, doctors and hospital clinicians are essential for your treatment, but they can’t understand what it’s actually like to live with the condition. But other people with lung disease do.

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26 October 2020