In mid 2007 I started feeling unwell. I was playing football three times a week, and just started to think being 34 – I was getting old. Visits to the doctor in June and July and a diagnosis of stress and anxiety. By August I had pains in my joints and a constant blocked nose, and I started having bad night sweats. By September I felt like I was dying.
Finally I took myself to A&E, and a junior doctor announced I had something wrong with my lung. A bronchoscopy was scheduled next day, and a week later I was admitted with ‘pneumonia’, which in October was re-diagnosed as TB. A quick transfer to the infectious disease unit followed and solitary confinement. No, it wasn’t TB, so back to a diagnosis of pneumonia. This all took over a month.
Admitted again in November. Then the bombshell. They couldn’t find out what was wrong with me, and if they couldn’t find a cause “you will be dead within a month” – now that’s scary. I was, however, diagnosed in mid November 2007, and introduced to rheumatologist Dr Mclaren that day. It all happened quickly then. I was transferred to another hospital into the renal unit, next day it was the fertility clinic to discuss my future, and by day three started cyclophosphamide and high dose steroids 80mg per day. By May 2008 I’d had 10 pulses of cyclophosphamide and things seemed to be working. Unfortunately I’d gained weight – 3 stones – and I was gutted, but hey, I was still alive.
Things progressed and by 2009 my medication had been reduced greatly, and by the end of 2009 they were discussing taking me off steroids completely.”Woohoo”. Further checks with the rheumatologist and with the renal team “If your bloods are OK we will start to wean you off completely”. Famous last words! Two days later the results – my creatinine had shot up, “maybe a blip”. Retested but they had gone up further. In January 2011 I was scheduled for a transjugular biopsy. Next day I got the call “big relapse happening”! Oh no! I was back in the renal clinic that day. I had a dialysis line stuck into my jugular vein, and plasmapheresis began, 8 times in the next 10 days – six hours each time (along with Rituximab, and 60mg steroids).
From February 2011 I worked hard, managed to get back to full-time work, and by May 2011 started to play football again, and by October I’d climbed a few mountains too. That started my plan to undertake the 79 mile Sutherland trail walk in Scotland. I decided I could raise money for Vasculitis UK as I wanted to give something to others. I trained for 6 months, and finally accomplished the walk in May 2012.
My medication is now down to 5mg steroids, and only 8 pills a day now – boohoo. There are plans to reduce them further. Probably I will have tough times again at some point in the future but for now I love and enjoy my life. As for my health, well my kidney function is less than 50% but I’m happy and I’m alive and living my life to the full.
Update 2017
It’s 10 years now since I was first diagnosed – and, despite ongoing Kidney worries – everything else has settled down for the mean time. I am working full-time, traveling with the work, climbing mountains, and living life to the maximum.
You may also like to see the Individual Disease page on Wegener’s Granulomatosis (GPA)