Zoe Hill was diagnosed with Wegener’s Granulomatosis (Granulomatosis with Polyangiitis, or GPA) in 2006, and wrote her story to highlight the need for awareness and early diagnosis.
After a series of severe infections, emergency operations and hospital admissions over a three-month period, I was diagnosed with WG (Wegener’s Granulomatosis, now called Granulomatosis with Polyangiitis, or GPA) in 2006 (I was 34). When finally diagnosed, a doctor threw a piece of paper at me with the name of the condition on it and said ‘you’re having chemo tomorrow’ as he rushed off the ward. I was petrified. Did I have cancer? What is this Wegener’s thing?
So, I started a course of cyclophosphamide the next day and the only information I had on WG was what my husband found on the internet – worryingly, the doctors and nurses used to borrow this too!
Unfortunately the WG still ran amok, I feel the lack of knowledge and specialism on the part of the diagnosing doctors resulted in a lot of damage to my body here’s a list of the main points: total collapse of my nose (saddle nose), lung damage and permanent collapse of lobes, heart damage, narrowed windpipe leading to a permanent tracheostomy, deafness caused by destruction of the inner ear – I rely on a bone anchored hearing aid, osteoporotic fractures in my spine, ribs that break if I cough too hard…..the list seems endless. I have adaptations in the home like a stairlift and bathing aids and I have to be pushed in a wheelchair to get about outside. I rely on a huge regime of medication and hours spent nebulising each day just to keep things on an even keel.
The best thing I did was pushing to get referred to Dr David Jayne and the team at Addenbrookes in Cambridge. That, along with the ‘wonder’ drug Rituximab, was a real turning point in the management of my WG.
Before that the WG ran wild – nothing really helped, it was constantly flaring and ‘grumbling’ until I started having treatment at Addenbrookes in 2009.
Since then, my husband has been trained to give me IV drugs at home to supplement my tablet meds, including high dose antibiotics via a portacath and weekly immunoglobulin therapy via pump infusion subcutaneously.
Because of WG, I have been close to death on many occasions. One of the worst was when my lungs collapsed while undergoing an operation.
Thanks to the skill of the docs and two weeks spent on intensive care, I pulled through.
I like to always know the facts of my condition and I asked one of my consultants how he sees my prognosis and the way he put it was I could get tickets for the Olympics but don’t rush to get some for the World Cup. I know it sounds a bit sick but I’m fine with him telling me like that, and now I know what target I have to beat!
My husband became my full-time carer in 2006 and a major part of my survival of WG and all it has thrown at me is down to his and our son’s love and support. And of course, the excellent care from Addenbrookes is vital, too – hence why we decided to move over a hundred miles to Cambridge.
I would recommend that anybody diagnosed with WG or any Vasculitis condition gets as much knowledge as possible and empowers themselves.
If you are not totally satisfied with the care you are getting, push to see a specialist like Dr Jayne – care from a vasculitis specialist saves lives – I’m proof of that.
I don’t want to bang on but I want fellow sufferers to see that even if things do get really bad there is always light at the end of the tunnel. Life for me is difficult with WG but I won’t waste my tears on it any more I am so grateful for the life I still have, even if it is hard at times.
I would recommend that anybody diagnosed with WG or any vasculitis condition gets as much knowledge as possible and empowers themselves.
If you are not totally satisfied with the care you are getting, push to see a specialist like Dr Jayne – care from a vasculitis specialist saves lives – I’m proof of that.
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