30 years ago, I had never heard of GPA Vasculitis. I had also never considered the cataclysmic effect a debilitating disease can have on your life. I was 36 and doing OK. I had a good job (as an IT Consultant) that included plenty of travel and a decent salary package; all that was soon to become far less relevant.
I was on holiday in the USA – a fly drive. I remember the moment my life changed. I had jumped in a pool in a motel in Mariposa, California. I thought nothing of getting water in my ears. A few days later I arrived in L.A and noticed a popping sensation in my left ear as I went up in the lift at the hotel. I thought little of it and got some OTC ear drops and flew home from LAX the following day.
I was finally diagnosed with GPA Vasculitis in December 1992 – 4 months after my ear problems started. I had been bounced around by medics until finally being admitted to the Infectious Diseases Unit at Churchill Hospital in Oxford. I had seen ENT consultants all over Europe (I was still somehow working!) They thought I’d picked up an obscure bug on my travels. My joints had stiffened up and I felt very ill and incredibly tired. Both my ears were now affected. My kidney function was going through the floor. I was scared. I also suffered from Scleritis in both eyes and a most unpleasant ‘extra’ – a condition called Orchitis*.
*Editor’s note: Orchitis is the medical term for inflammation & swelling of the testicles.
Eventually, a Radiologist and a team of Immunologists diagnosed me with Wegener’s Granulomatosis. The assumption was that it had been ‘triggered’ by the ear infection, though nobody could be certain. I spent the next month in The John Radcliffe being administered Cyclophosphamide (I had double the normal dose and my hair fell out) and high doses of Prednisolone along with various other drugs to control the side effects. I was incredibly well looked after by a Medical Professor and his team. I was still absolutely terrified.
I was eventually discharged after about a month. For many of the following months, I was reviewed weekly in Outpatients. I felt ‘safe’. I had managed to return to work although I was battling both depression and anxiety. The monitoring and regular blood tests continued for years.
Eventually, about 14 years ago, I was told by my Consultant (a Medical Professor) that it was conceivable that this dreadful disease had ‘burned itself out’. It was time to get on with life. My health slowly started to improve and, having lost a bit of weight I felt so much better and more capable. I had met my wife, Ann 9 years ago and our future was looking bright. Vasculitis was in the past.
Then in 2019 things changed. I was diagnosed with Double Pneumonia and several quite unpleasant infections (including cysts). I was being prescribed antibiotics almost bi-weekly. I was struggling. I was suffering with fatigue and my breathing was dreadful. At this point, I was under the care of the Respiratory Medicine Dept. In August 2019 I was admitted to hospital for IV antibiotics which still didn’t resolve matters. In January 2020 I was admitted again and diagnosed as having relapsed with my GPA Vasculitis – this time seriously affecting my lungs and also my shoulder joints. I spent a month in hospital and was given my first Rituximab infusions.
I was devastated. I really had believed Vasculitis was behind me. Sadly, it doesn’t look like it ever is.
Since then, my hearing has taken a further big hit and, due to COVID-19, we’ve barely left the house. My Respiratory Consultant had made it very clear that COVID-19 would probably kill me. We’ve barely had any support from family although a few local people helped us at the start of the pandemic. Ann has been truly amazing throughout but it’s exhausting caring and doing pretty much everything. Friends and family, with just a few exceptions, have disappeared. The loneliness of chronic illness is very real. Thankfully, Vasculitis UK has always been impressive and very supportive. Although our future looks a bit different now, we’re not giving up.
On the flip side, UK healthcare is now less impressive. Everything has been cut back and the medics no longer have time to talk. It’s a battle getting vital blood tests scheduled as my GP is less ‘involved’ than my first time round in the 1990s. Budgets are squeezed and we’re all suffering. I honestly don’t believe my GP fully understands my situation – he doesn’t have time. My Vasculitis-related blood results show that the disease is ‘under control’ but I still feel pretty dreadful, struggle with my breathing and suffer widespread joint pain. This is clearly exacerbated by being immobile. I can barely walk. My consultant also believes I also have fibromyalgia.
Vasculitis at 66 is considerably harder to deal with than it was 30 years ago!
The one glimmer of hope for me, after 2 and a half years of being removed from society, is the emergence of Evusheld – a ground-breaking prophylactic antibody treatment. Unfortunately, it’s quite expensive and the UK government appear to be dragging their feet. Our MP has been involved but she’s not fighting for us either – she’s just toeing the government line.
But, somehow we’ll get there… although I could do with a new pair of lungs!