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Agnes’ Story

“We understand each other and what we’re all going through”

Agnes, 65 from Inverness, has been living with the chest condition bronchiectasis for over 40 years.

She has learned how to manage her condition well at home, but still struggles sometimes and found lockdown particularly difficult.

Lifechanging diagnosis

I was diagnosed with bronchiectasis when I was 22 years old, right before the birth of my daughter.

I kept getting chest infections and I would cough non-stop so I knew that something was wrong.

It was even more worrying really because I was pregnant and that also meant they had to hold off on diagnosis until the baby arrived.

It was a very daunting time and I had never heard of bronchiectasis before in my life.

So after I had my daughter, I went down to Aberdeen and they did some test to find out what was wrong and how bad my lungs really were.

And once they did some tests, they told me that most of the bottom half of my left lung was damaged beyond repair.

I was back in the hospital a few months later to get the damaged part of my lung removed and that was a scary experience.

I was in hospital for three weeks in Aberdeen and then recovered back in Inverness and slowly I started to feel a bit better.

I still get infections but not nearly as bad as before and I felt better about my life again.

Learning to manage the condition

When I was younger, I used to get chest infections all the time. I tried to manage it with antibiotics but as I’ve got older the infection got more of a problem.

I still have bronchiectasis in my lungs and that’s something I will have for the rest of my life. I always cough a lot.

But mostly I’ve managed to live normally and I am lucky.

I have to clear the phlegm from my lungs every day. If it builds up, it gets infected and I have to contact the doctor straight away and get to hospital.

It can sometimes feel frustrating and it’s like having a rattling feeling in my chest. I can feel out of breath or breathless sometimes when it gets bad and that’s hard.

But I have my husband to help clear my lungs and I’ve learnt to do it myself too.

If I’m doing it by myself, I use a pipe and blow into a valve which vibrates your lungs to bring up the phlegm.

And sometimes patting on the back works too and my husband was taught how to do this by a physio. I also take a nebuliser with antibiotics to prevent infections.

If it’s playing up, it can be stressful but I have been managing it for 40 years now. I know myself when I don’t feel 100 per cent and I know what to do.

Support group got me through lockdown

Lockdown changed my life completely. I was living inside my house for over a year because I was shielding.

I just can’t take any chances ending up in hospital. I can’t risk getting the infection or I would get seriously ill or worse.

I really missed the Chest Heart & Stroke Scotland Cheerful Chesters group. I’ve been going to it for almost six years now.

We do exercises and then always have a good chat afterwards and a cup of tea. The others are like me and have a chest condition, so we understand each other and what we’re all going through.

But that all stopped of course because of lockdown. I really missed my social life and seeing friends at the group.

I’ve sometimes felt a bit fed up and down in lockdown like everyone else. But I found out about the Chest Heart & Stroke Scotland exercise and social group on Zoom and I’ve really enjoyed going to those each week.

When I’ve felt a bit fed up, stuck in the house every day, the Zoom groups have cheered me up and keep me active too.

It’s definitely helped with my condition and it’s just generally what keeps me going just now.

We all have a good laugh at the quiz too and the variety of chair exercises means that everyone can get involved.

Everyone is in the same boat and no one is looking at you thinking you can’t do this or feels worried about what others think. We’re all there for each other and we go at our own pace.

Lung conditions can make you feel self-conscious and you can only do exercises for so long but none of that matters in our Zoom groups.

It’s brilliant and I feel more motivated every week I go.

People are leaving hospital feeling scared and alone. You can change that.

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