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.