FOLLOWNG ON FROM – A MEDICAL MYSTERY
It was always an early start to the day at The San, because the cardiologist made his daily ward rounds at 6.00am. My spirits never failed to lift when he appeared. Due to medication I hardly slept and the kindly presence of Dr Flood signalled morning, and a cup of tea before breakfast. His colourful shirts and ties cheered me too.
After about a week of testing he told me that my medical team were now pretty sure I had some form of vasculitis, but were working towards a more specific diagnosis before starting full-on treatment. The term vasculitis didn’t mean much to me, but at least it wasn’t leukaemia, which I knew the bone marrow biopsy had been all about. A problem with my blood vessels sounded, well relatively OK.
Apart from the constant tests, I didn’t actually mind being in hospital. I had a private room and felt fine except for general weakness. Rob stayed in Sydney and spent every day with me. Do you know how wonderful it was to see him walk through the door each morning? It was Dr Flood multiplied by 50!
He would bring in our laptops so that we could work on organizing photo rights for the book. As the majority involved UK and French institutions it was a complicated business. Looking back, I think this saved our sanity by distracting us from the seriousness of the situation.
But in the recesses of my still foggy brain I was a bit panic stricken. I hated telling friends and family where I was, because their concern increased my own. Thankfully, we even managed to keep my mother-in-law in the dark. For thirty years she had spent all her waking hours worrying about our wellbeing and this would have confirmed her darkest fears.
One night at the end of January I lay awake watching the Australian Open tennis final between my hero Rafael Nadal and Novac Djokovic. I made an illogical little bargain with myself. ‘If Raffa wins I’ll be alright.’ Well of course after an epic six hour battle ending at 1.30am the wretched boy lost! It was a bit of a blow, but I had forgotten about the ‘bargain’ by morning. In fact, my mind was still as misty as the Blue Mountains in mid winter. Specialists would appear and chat to me, but apart from Dr Flood I could barely remember who they were…… or comprehend what they were saying.
Not surprisingly, I was wheeled off for an MRI scan on my brain. How awful this procedure must be for patients suffering from claustrophobia. For me, the warning to remain perfectly still triggers an overwhelming fear that my muscles will suddenly spasm, and that the whole thing will have to be repeated. Half way through the scan I was removed from the chamber. ‘I’m just going to inject some dye’ the technician told me. Even I recognised this as a sign he had found something nasty. After a while the jack-hammer noise of the MRI began to ‘speak’. It reminded me of a story I often heard on the radio during my childhood called Sparky and the Talking Train. The rhythmic train noise warned young Sparky about a loose wheel on a passenger car; ‘Right front wheel! Right front wheel! I swear this noise was telling me, ‘Holes in brain, holes in brain!’ Sure enough, the MRI showed a shower of tiny white spots where vasculitis had been attacking my blood vessels. Presumably this accounted for my cognitive deficits; information was slipping away before it could register.
In retrospect, the damage to my brain may explain another strange symptom I had experienced intermittently over a period of perhaps ten years. I would have brief episodes in which I feared I might fall over. I would feel….not exactly dizzy, but as if I had actually lost the ability to remain upright. If Rob was with me I would discreetly take his arm. If alone, I would hang onto anything available. Failing that, it was a fraught business of mind over matter. I never did fall; nor did I ever mention these episodes to a soul. I assumed it was just some odd, but insignificant post-menopausal issue. If there is any excuse for such a stupid, head-in-the-sand attitude I cannot dredge one up.
I had now been in the San for about a week. Medication was keeping me stable and free of chest pain, but an ultra-sound had revealed the pericardial effusion I mentioned earlier; a build-up of fluid in the sac surrounding the heart. It creates dangerous pressure and explained the extreme chest pain I had experienced, plus my still abnormal heart rhythm. What on earth had caused all this? Well, I was about to find out.
YOU HAVE CHURG STRAUSS..….I HAVE WHAT??
Dr Flood arrived one morning and told me that a final diagnosis had been reached. I was suffering from an extremely rare condition called Churg Strauss Syndrome. He explained that it is notoriously difficult to diagnose, but that my seemingly unremarkable medical history had provided three vital clues; adult onset asthma, allergies and nasal polyps. My more recent problems, were also classic symptoms; muscle wastage, inflammation in my brain, fluid around my heart, and even the tingling and numbness in my toes, which was the onset of neuropathy. I was told that the condition is incurable, but that remission could be achieved. A treatment regime was to begin immediately, before any more damage occurred.
Sweet nurse Holly had never heard of Churg Strauss. Next day she brought in a couple of sheets of paper downloaded from the computer, but hadn’t had time to read properly herself. Bless her heart, I’m not sure this was professional….or sensible. When I read the information my own battered heart nearly stopped beating with the shock. Holly later read it herself and was mortified that she had given it to me. The condition and the prognosis all sounded so ghastly.
I’m not a religious person, but when Rob bought me a little crystal angel from the hospital shop I fervently hoped she would watch over me.
TO BE CONTINUED……A BUMPY JOURNEY WITH CHURG STRAUSS SYNDROME