PANDORA’S BOX PART III – CREEPY ANSWERS!

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