Updated: Jul 19
Angela McEvoy, is 41 years old and lives in a small village near Blackpool in Lancashire with her husband and dog. She is a patient of Dr Robert Niven’s at the North West Lung Centre, Wythenshawe Hospital in Manchester.
My TBM Story
I had always struggled on and off with my health particularly my chest. As a child I was always chesty, barking coughs and exercise induced asthma. Then aged 23 I contracted a virus which de-stabilised my asthma. I would have sudden exacerbations, without warning, varying in degrees of seriousness. No one could get to the bottom of what was going on. I suffered with repeated chest infections, sinus problems, and reoccurring bronchitis.
In 2014 I was referred to my now consultant’s clinic for my difficult asthma. It wasn’t too local to where I live but I knew the regular journey to clinic would be worth it. Following a battery of tests, I was diagnosed with severe eosinophilic asthma, plus other underlying contributary conditions. Over the following years things began to deteriorate. The infections got worse, I contracted pneumonia and some days I felt so sick with tiredness I could barely lift my head.
Of course, what we know now is it wasn’t ‘just asthma’. July 2017, I had the bronchoscopy procedure that would change my life. TBM was mentioned because of the extent and frequencies of chest infections, previous test results and the sound of my cough! It was explained to me that it was quite rare, or perhaps more likely, underdiagnosed, and whilst it brought answers to things that had been difficult for many years, it also changed everything.
I was diagnosed with a severe collapse in my Trachea and bronchi (over 90%) and that the treatment for this would make it impossible to work and that I was would be in for a rough ride. They weren’t wrong! My current treatment is a daily and nightly routine of CPAP, plus a range of inhalers, hypertonic saline via a nebuliser and painkillers to help the associated pain of the collapse. I have been on this for two years and this combination of treatments have helped a lot.
Although I still have exacerbations of chest infections, bronchitis and pneumonias, I have less reliance on steroids, an improved rate of infection and reduced incidents of hospitalisations. These are the milestones that are used to track my condition, the more stable I stay at this stage the better.
For me the information available on the condition, apart from via my consultant, was extremely limited in the early days post diagnosis. I stumbled upon the Cure TBM Facebook group and found a community of people who understood, could relate to what I was going through and helped educate me on the condition through advice and experiences.
To help come to terms with my condition, I started a blog documenting my TBM journey and its associated challenges. Through this process I have re-discovered my love of writing and have hope that in some way my blog can help others going through similar experiences.