A lengthy diagnosis
“I was first diagnosed with asthma just after my 20th birthday, when I’d been ill for about a month with a chest infection. I spent three weeks in hospital being treated and thought the asthma would go away once my chest infection cleared up.
"When I was discharged I wasn’t given any detailed advice by the consultants. No-one explained how serious my asthma diagnosis was or that I needed to get help whenever my symptoms got out of control. They just prescribed me a combination inhaler and sent me on my way.
“I went to a follow-up appointment with my GP two weeks later, and I knew I wasn’t well. Everything I did, like climbing the stairs, felt like hard work and left me feeling breathless. I assumed I still had a chest infection because I was taking all my asthma medicines as prescribed and my asthma nurse had checked my inhaler technique and said it was perfect. At the appointment my GP told me my peak flow was very low, and after assessing my symptoms he admitted me to hospital for a second time.
“A few days later I was discharged, but at my next fortnightly check-up the same thing happened. This time in hospital I was diagnosed with severe asthma, prescribed a separate reliever and preventer inhaler, and was started on Xolair injections (often prescribed to people with severe allergic asthma).”
“Even though I was glad to have a diagnosis, I didn’t feel like I was getting the answers I needed, and the pattern of being in and out of hospital continued for four years. I would be home for three to four weeks after being discharged, but then I’d need to be admitted again for another two weeks because my symptoms had got worse. I had to stop doing sport – I had played hockey and rugby to a high level – and had to leave my job as a nursery teacher, which I loved. I also moved back in with my parents and my social life suffered."
Getting a specialist referral
“In 2007 a new GP referred me to the severe asthma service at Wythenshawe Hospital. At my first visit my consultant told me that if my asthma continued to be so difficult to manage, I wouldn’t survive another year. This was shocking and a real eye-opener. Despite being in hospital and high dependency on so many occasions, nobody had actually sat me down and explained that asthma is a life-threatening condition.
“I had a series of tests including a blood test, CT scan and a chest X-ray. On my second visit I was diagnosed with severe eosinophilic asthma (a type of asthma where there’s a high level of white blood cells called eosinophils in the airways) and started on a different combination of treatment.
“I’m now on an effective combination of medicines, including a range of inhalers, steroid tablets and nebulisers. I also continue to have a Xolair injection every two weeks. This has been life-changing as my asthma is so much better controlled and I’ve been able to get back into employment. But it took around two years to get here, and my consultant is always looking into ways my treatment can be improved.”
Dealing with side effects
“Unfortunately I have experienced side effects as a result of taking steroids for so long. The most obvious has been the weight gain - just short of seven stone – which I found really difficult to deal with at first because I used to be really fit. My appearance changed so much that people who hadn't seen me for a while used to comment, which affected my confidence even more. Now it doesn't bother me at all. I’ve come to realise that even though I’m getting side effects from taking steroids, my asthma medicines are keeping me out of hospital so it’s worth it. The side effects don’t outweigh the benefits quite yet and there are ways to get them under control.”
Preparing for my asthma reviews
“I visit Wythenshawe Hospital every two weeks for an asthma review. Although it’s a 150-mile round trip it’s worth it, as since I started treatment I’ve had very few asthma attacks and hospital stays have been shorter.
“I always prepare for my asthma reviews by writing up a list of questions, because I as soon as I come out of the appointment I always think: ‘I wish I asked this or that’. It’s a really useful prompt and I ask my family if they think there’s anything I should ask. I also find it useful to have someone come along to the review with me. Hospitals can be daunting and sometimes I just want to get my review over and done with, which means I can rush things without properly thinking. If someone is with me, they can prompt me or ask questions on my behalf.”
Falling in love with sports and activities again
“Asthma does have a huge impact on daily life, and I still find everyday tasks a struggle, but I’ve learned that you don’t have to give up on the things you love completely. I’ve adjusted my life. For example, after I left my job, I started a combined honours degree in disabilities studies and early years at night school. I’m now just starting an Open University masters in childhood and youth studies from home. This fits in with my hospital appointments and keeps me busy.
“I’ve also gradually got back into fitness and have started coaching netball teams. What I’ve realised is that you can still participate in sports when you have severe asthma, but you just have to tailor them to suit you. Planning is key – I always make sure I’m feeling well with my asthma and keep my reliever inhaler with me.
“I wouldn’t have been able to do any of this without specialist support and my asthma medicines, which is why it’s essential that Asthma UK keeps researching into new treatments. They are a lifeline for people like me who have severe asthma.”
- Find out more about specialist asthma care and getting a referral from your GP
Last updated October 2016
Next review due October 2019