I know my bronchiectasis and how I keep healthy
Lynn shares how she developed a very personal plan to live with bronchiectasis, including educating her employer how she can work and keep well.
I was diagnosed with bronchiectasis in 2008, following 18 months of chest infections. I was persistent with my GP to get referred as I felt something was not right.
After scans and other investigations, I was excited when my hospital consultant finally gave me a diagnosis because I wanted to know the treatment and how I would be cured.
When I realised there was no cure and it was a long-term condition that would progress, it felt like a bereavement. I had a young daughter and a full-time job and was very active - I grieved for the life I had imagined. I was depressed as I tried to get to terms with a different life.
It was scary for me. I didn’t want to talk to my family about it. It was scary for them too. But I did talk to the BLF Helpline, and they were great. After a while, I made it my project to learn all about bronchiectasis, how it’s treated and how I could help myself. I needed educate myself and understand as much as I could to help deal with the diagnosis.
I grieved for the life I had imagined. I was depressed as I tried to get to terms with a different life.
How I manage my bronchiectasis
Twice a day, I clear my chest. I’ve found it’s really important to do these every day, even if I’m feeling well. I do airway clearance exercises – mostly huffing - and use my nebuliser to take saline. It takes me around 20 minutes to cough mucus up, and perhaps 30 minutes if it’s very gunky. I also use inhalers to help with symptoms and take tablets to help thin my mucus.
After I read the research, I pushed my GP to get on a pulmonary rehabilitation course. After 4 years of asking, I finally got on one and I found the education really useful. I learned techniques to clear my chest and about devices that could help. It would have been so useful to have known this earlier and to have started to use a flutter device sooner.
Every year I have my flu jab. It also helps me to work from home when there’s flu and lots of colds going around the office. I’m very careful about hand hygiene all year round.
I also watch my weight and 6 months ago I became vegan.
This is my plan, and it’s all about me feeling in control of my condition. I know my bronchiectasis and how I keep healthy.
At the weekends, I walk a lot. If I’m feeling well, I can go into the hills, but I’ll walk on the flat if that’s what I can manage. I’ve also got an exercise bike at home. Over the years, I’ve come to understand when I can push myself and when I need to listen to my body and rest.
This is my plan, and it’s all about me feeling in control of my condition. I have a personal treatment plan – and I challenge my consultant if they look to change what I’ve learned works for me. I know my bronchiectasis and how I keep healthy. I understand that what works for me may not work for others.
About twice a year, my symptoms flare up
Every 6 months or so, I spot that the colour of my mucus turns a dark yellowy green, and sometimes there’s blood in it too. I’ve learned that’s the start of a flare-up and my breathing will generally get worse I’ll cough up a cup of sputum (rather than enough to fill 1-2 egg cups) when I try to clear my chest.
I have emergency antibiotics and steroids at home. As I also have Pseudomonas in my airways, and nebulise twice a day with inhaled antibiotics. It’s really important to take the right antibiotic and I keep sputum sample pots at home so I can always send a sample in straightaway to see if I will need to take another type of oral antibiotic.
My employer has been great, and over the years they’ve listened to my ideas about how I can continue to work and keep well.
I work flexibly
I still work full-time, flexibly. My employer has been great, and over the years they’ve listened to my ideas about how I can continue to work and keep well. They’ve arranged things like a quiet room where I can use my nebuliser and having an office with a door to try to avoid contact with colleagues with colds.
It took me 7 years to tell everyone at work. It’s an invisible illness, and my colleagues didn’t know. At first, I didn’t want them to look at me differently or feel sorry for me.
I walked Hadrian’s Wall
When I was ready, I told my colleagues about living with an invisible illness in an article for my company’s magazine. I asked them to sponsor my walk along Hadrian’s Wall to raise money for the BLF. I walked in September 2016, despite shocking weather!
It was important to me to take control of my condition, so I educated myself and the BLF Helpline and website helped me. I also found support on social media - I belong to an online bronchiectasis group that suits me - we support each other and exchange tips. This self-education helped me to come to terms with my diagnosis and live a good life.