PANDORA’S BOX – PART II…… A MEDICAL MYSTERY

Following on from PART ONE of course.

By now I had become  a  medical mystery. What happened next probably saved my life.   My  worried cardiologist at Katoomba  had a discussion with the hospital’s emergency doctor, who had assessed me when I was first admitted.  This lovely lady also worked part-time at one of Sydney’s top private medical centres, the Seventh Day Adventist Hospital,  on the city’s upper north shore at Waroongah.  As she explained to her colleagues; ‘They have far better diagnostic equipment down there,  and I think it would be best  for Pauline  to be transferred to them.’    So off I went on an even longer and more expensive ambulance trip to the San, as it is  affectionately known. My medical fund initially refused to cover the cost, but dear Dr England interceded on my behalf and all was well.

I was admitted to  the close monitoring section of the cardiac unit, where  I underwent every test imaginable; scans, x-rays, exhaustive blood tests, a lumbar puncture and a bone marrow biopsy. The biopsy was a worry, because I knew they were thinking I might have leukaemia.

Scarier still was an echocardiograph, which involved swallowing a probe with a device attached to further test my heart function. It had been discovered that I had fluid in the pericardial sac. This was compressing my heart, causing  the  pain  I’d experienced, plus  the abnormal rhythm still showing up on ECG’s.

I can honestly say that none of the procedures  I underwent turned out to be as bad as I feared. The only time I was ‘undone’ was during a pelvic ultrasound, ordered because my darling mother had died of ovarian cancer.  It was one invasion too many, and I wept  as I was wheeled back to my room.  Holly, the sweet nurse who was my main carer,  shed a few tears  herself in sympathy.

By this time  half a dozen specialists had been called in, and my medical file was growing at an alarming rate. I was asked if I had been to any exotic locations recently? NO.  Had I been handling wild birds?  NO .  These questions were  asked because eosenophils  fight against  parasites and I had lots (eosenophils not parasites)! I should have been very worried at this point and no doubt poor Rob was, but I didn’t  seem able to  absorb it all. I couldn’t even remember the names of my doctors.

As the days passed my entire medical history was documented;  not that it was very extensive.  I grew up on a Tasmanian dairy farm with plenty of fresh air and exercise and a  healthy diet.  My siblings and I spent a great deal of time in the bush, or up the backyard lucerne tree. That’s me on the left.

We suffered only  the usual childhood  complaints and rarely missed a day at school. It was not until  my early thirties  that things went slightly awry.

HOW IT ALL BEGAN…. ALLERGY AND ASTHMA

I was under considerable stress at the time; working full time in a  Sydney public library and studying for a formal qualification.  In addition, Rob and I were  working part-time at a sports centre we’d purchased.  And oh dear,  I have to admit that I  had been smoking twenty cigarettes a day since my teenage years.

The trouble started with a severe  bout of bronchitis, which  appeared to have left me with asthma, and a  sensitivity to  various foods and chemicals. Suddenly I could not tolerate the fumes from oven cleaners,  insect repellents, paints and varnishes, or even  newspaper print. A copy of the Sydney Morning Herald in the car was enough to cause me terrible problems.

My maternal grandmother had been a severe asthmatic. I concluded that I had overburdened my immune system. allowing those asthma genes to surface.

As someone who adores food, the most horrible aspect all this was having to go on a six week ‘exclusion’ diet, while my specialist tried to identify specific allergens. No more going out to dinner. On visits to friends and relatives I had to take   along a little plastic box of my bland  ‘rations’.

Here is a sweet, funny note my partner Rob left for me one day after I’d suffered a nasty reaction to something (despite the diet)  and was feeling fed up with it all;

My Dearest Honeypot

Please don’t become discouraged with your diet. I know it must be very hard to have to sit there eating lettuce, parsley, eggs, chicken, pears and rice cakes, while watching Bob eat what he likes. But if you give up now you will have wasted all that time and we will never know whether  it  would  have worked or not. I get very disappointed when you have a relapse like you did this morning. I feel like wringing the doctor’s neck, but if this doesn’t work we’ll either have to try someone or something else.

So don’t give up, it’s worth giving anything a try and I worry too much about you to let you give up without seeing it through. But you must remember  to buy your kickboards down at the  Quay so you will have something to eat between meals.

This is all for now, your everlovin’ Bobbie. xxxx

‘Kickboards’ was a joking reference to the tasteless rice cakes I had to eat instead of bread. I was travelling to work via ferry from Sydney’s North Shore, hence the reference to Circular Quay.

My worst reactions were to metabisulphite,  an  antioxidant used in a wide range of  commercially prepared  foods and drinks, including wine.  The idea of the diet was that after a while I would be ‘challenged’ by various substances. It seems hard to believe, but I was given what turned out to be a sulphur  based pill as a challenge to be carried out at home. I collapsed in the shower with a horrendous response.  And do you know what? I don’t think that damn diet achieved anything.

Fortunately,  strict labelling of preservatives  had recently  come  into force, but  nevertheless  I suffered  some terrifying anaphylactic episodes of asthma, hives and swelling of glands (thankfully never in my throat).   Several times I was rushed to hospital to be given oxygen and placed on a drip.  One time, funny in retrospect, Rob suddenly keeled over  beside my bed.  Naturally all the attention  transferred to him. We never did discover why he fainted. He insists it was the response of a shocked, devoted partner.  Hmm, more likely weariness, a warm room  and his naturally  low blood pressure I say.

It is sobering  to think how close I must have been to death on  these occasions, because the crisis point would usually occur before I received treatment.  At one point it was decided that I should carry a epi-pen, containing adrenaline, but unfortunately the preservative used in the pen was  metabisulphite.  I was assured that the adrenaline would override the sulphur, but  I could never quite bring  myself  to find out.

For a long period I was unable to eat beef. Metabisulphite is sometimes used, illegally, to keep old meat looking red and fresh and the Health Department sent someone out to run some tests on a sample of steak. Nothing showed up….it was just another frustrating mystery.

I  subsequently  developed chronic  nasal problems, and underwent surgery to remove polyps. When they began to regrow twelve months later I was given a huge steroid injection in my bottom. The jab was  most unpleasant, but at least it  worked, and allowed me to avoid more surgery.  Thankfully the polyps did not return,  but for  many years I was unable to smell or taste except for brief periods when  I took the harsh, anti-inflammatory drug Prednisone.  The only positive regarding  my health issues was that they motivated me to give up smoking. I couldn’t drink alcohol either, due to the sulphites used  (even for sterilising the bottles). I envisaged  living to a rather joyless  old age.

In  my late thirties I made a career change and began working as a  vocational trainer. I had  also begun  working  part-time as a freelance writer, particularly  for gardening and travel publications. Understandably, my impaired sense of smell was a hindrance.  There were times when I lied through my teeth and  told proud gardeners that  yes,  their fragrant shrubs and flowers smelled heavenly. It annoyed me intensely that medics  dismissed my lack of taste and smell as  being unimportant in the grand scheme of things.  To me it was worst issue of all.

We were travelling widely and I tried very  hard  to be careful especially on planes. I did have  an ambulance ride to hospital while we were in London covering the Chelsea Flower Show. The strange thing was that I could eat something with impunity for ages and then  suddenly react to it, even to a plain slice of toast. So weird.

In 2002 we moved from Sydney to the  clear air of the  Blue Mountains, two hours west of Sydney.

I still had asthma,  but  it was well controlled by medication unless I had a reaction to something. There is a saying that the air in the Mountains is so pure that bread will rise without the addition of yeast! I hoped I might rise from my quagmire of health issues.

Naturally, none of my allergy issues seemed remotely connected to the collapse which had landed me in hospital.  I was surprised when  my  medical team, especially the immunologist,  began to  show so much interest.

PART III FOLLOWS……CLICK HERE!