I was diagnosed with Wegener’s Disease (GPA) in 2014 at the age of 62. It started off with a cough which I had for 18 months, with nothing visible on chest X-rays. Not long before I was diagnosed, I remember saying to my GP “In the last 3 months I have been in every month with something different wrong with me. In the last month I’ve been in every week with something else wrong. What is going on?”
By the end, I had irregular heart rhythms, a continuous cough, night sweats, hoarseness, blocked Eustachian tubes, pains down the back of my legs.
Eventually, a chest CT scan showed areas of ‘consolidation’ in my lungs, so I was immediately admitted to hospital. My diagnosis was finally confirmed a week later by kidney biopsy.
I was hugely relieved when the CT showed an identifiable problem – I didn’t care how bad it was. As the chest consultant said: “Now we have something to get our teeth into”.
In retrospect, there was a major psychological impact. I went from a fit, healthy 62-year-old orienteer who could trot happily for an hour over mountains or through forests, to a 63-year-old who had lost 10 kg and couldn’t walk 200m. This was not helped when, after diagnosis, I Googled the disease and the first phrase which leapt off my phone was “normally fatal within 3 months”. Fortunately, I mentioned this to a nurse and my consultant appeared within 20 minutes with some printouts covered with yellow highlighter giving an approved reading list!
I discovered our local support group in 2015. Suddenly I was with all these other people who had Vasculitis, who had had many of the same experiences and who understood what was happening to me.
I had a relapse in 2019, but I didn’t have any of the original symptoms – this time all the symptoms were rheumatic. However, a couple of doses of Rituximab managed this relapse.
The COVID pandemic was an anxious time for anybody who was immunosuppressed, as well as their partners and family. It was a huge relief when my consultant was able to tell me that none of his patients who caught COVID needed hospital admission.
I have a very reasonable quality of life – I’m still orienteering albeit I’m a lot slower over the ground, though that may be as much due to advancing years as Vasculitis.
The Nephrology department that looks after me regularly refers and consults with the National Centre of Excellence for Vasculitis, so I feel reasonably confident that if problems arise I’ll get good treatment.
A final illustration of how we can worry too much about things: after I went back to work part-time, I got into bed one night and put on my glasses to read before going to sleep. To my horror I couldn’t read properly, and my immediate reaction was ‘Oh no, the Vasculitis is going for my eyes’. The next morning there was a work email ‘Did anybody find a pair of glasses in Meeting Room 1?’
