I’m going to be trite for a moment, and you’re going to let me. You know all that “you’ve only got this moment, live for it as you never know when it will change” kinda stuff? Well, it’s true. Over a week and a half ago I was admitted to the Countess of Chester hospital. The excruciating pain in my hands and feet wasn’t easing and I had lost the use of my right hand overnight (wrist drop / radial nerve palsy). They ran a number of tests and found out that I don’t have rheumatoid arthritis, I have a much rarer and more aggressive autoimmune disease called vasculitis. Not only that, but I have an incredibly rare variant called Granulomatosis with polyangiitis (Wegener’s granulomatosis) or GPA, for short.
The day after, I lost the use of my right hand, my right foot also ‘dropped’ and my left hand is developing medial and ulna nerve palsies. The night before last, the bridge of my nose collapsed with a condition called saddle nose deformity. It may be possible to correct it in the future with bone grafts from my chest, but it’s not always viable or successful.
Currently we are racing to switch off my immune system as it is attacking my nerves, blood vessels, joints and sinuses. The danger is that it will start attacking my internal organs, kidneys are a particular target with GPA. At the moment we don’t know if the disabilities I’ve got are permanent or if I may recover some movement at some point in the future. There may also be further disability caused before we can stop the disease.
I started chemo last week and am being monitored very closely as the disease is very aggressive and constantly changing what it’s attacking. The advantage of having such a rare condition is that all the consultants are taking an interest so I’m getting a lot of medical attention!
There’s a treatment plan in place now for the chemo and drug therapy. Should it go to plan, and something more serious doesn’t happen over the next few weeks while we’re shutting off my immune system, I could go into remission in about 3 years, although it is common to relapse and I’ll need to be monitored for the rest of my life. I may also have some permanent disability, and, of course, the nose issue.
They’re now looking to find me a bed in a rehab centre for long term care and to help me adapt to my current and any further disability and to help with chronic pain management. There’s nothing as excruciating as the immune system attacking nerves and inflamed blood vessels!
So, now more than ever, live in the moment. It can all change so freaking quickly.
Love to you all.