Me and my hard-working bones

By:  Jackie  Sunday, 15. August 2004

I have always been a busy person.  I was working as a pub landlady when my Addison’s was diagnosed in 1981, not to mention bringing up my three children, then aged 6, 10 and 11.   The first sign that something was seriously wrong was my very slow recovery from a hysterectomy in March that year.

But I worked right through my pre-diagnosis illness while my husband bought the lease on a public house and restaurant.  Despite my low blood pressure, dizziness and nausea, I was driving myself to hospital and back for the various tests for Addison’s while we packed up and moved to the new premises. 

Customers were asking if I had cancer, I had lost so much weight.  Or what country I was from, with my deep tan.  At first my GP explained it away, saying it was an effect of the hysterectomy or an allergy to the anaesthetic, or running a busy pub, or having three young children.  However, he did refer me to the hospital, who started to run some tests.  My weight was now down to 34 or 35 kilos.

A month later I got my diagnosis. I started on 10mg hydrocortisone in the morning, 5mg in the evening, and 100 mcg fludrocortisone. It was August 1981, now twenty-three years ago.

The change in my appearance was quite dramatic.  Before long my jet black hair had turned white.  By Christmas I had gained around 20 kilos in weight, which was heavier than I had ever been before, although still an average weight for my height.  A customer from my previous pub literally didn’t recognise me.   He asked me if I was there, not realising he was talking to me.  I was still working 19 hour days, only now in the restaurant kitchen serving many, many meals.

Two years later my bloods showed that I had elevated calcium levels - hypercalcaemia - the result of overactive parathyroid glands.  I ended up having surgery to remove my parathyroid glands in 1984.

By 1988 my marriage was in shreds. I had continued to work all of this time, only having time off to go to the hospital.  I was now taking 40mg hydrocortisone a day to keep up with the demands of my lifestyle.  For a petite woman (barely 5 foot 1 inch tall) this was way too high.  Unknown to me, the excess cortisol was further weakening my bones, already vulnerable because of my parathyroid condition and early menopause.

When my marriage ended, I spent a short time as a cardiographer.  Then I started my nursing training in August 1989, living in the nurses home. But in 1991 my spine went and I was retired on health grounds. Once again I was out of a home and job with no income.

I moved into the first available bungalow on early retirement.  At first the renovation and furnishing kept me busy.  The place hadn’t been touched since the sixties and needed a lot of refurbishment, which I couldn’t do.  I also had no furniture and not much money.  But with the help of friends (one of whom would later become my husband), family, car boot sales and second-hand shops, I once again put my home together.  This time I was determined it would be for keeps.

In 1993, only twelve years after my diagnosis, my upper spine gave up completely and I had to have neurosurgery on two vertebrae at the base of my neck (the c7, t1 vertebrae).   This was a bad experience and I nearly died as a result of the anaesthetist ordering insufficient hydrocortisone cover for me post-operatively.  This was also the first time the endocrine consultant had not taken personal charge of my steroid dose during my hospital stay, whereas on previous occasions he had monitored my care daily.

Because of the type of surgery I was to stay lying flat for a couple of days and would not be allowed to sit up even for food or the toilet. I came round sometime later to find Patrick, THE friend, sitting at the side of my bed. He had not driven the sixty or so miles to the hospital, but had got a taxi because he was so worried about me. He stayed at the hospital for a couple of days helping to feed me and I knew then that I had a friend for life, even if he did pour the cornflakes into my ear.

As steroid cover for the spinal surgery, I was given 100 mg hydrocortisone intravenously pre-op. I believe that I was given a further dose during the surgery, but have no idea what happened after that. Some time during the night I was aware of a lot of people but not what was happening, although in my mind I was trying to tell them that I needed more hydrocortisone.   I drifted back to sleep. It would appear that I had not been given my steroids because I was asleep. The people in the night were the staff and the rescue crew. My blood pressure was virtually non-existent, and according to a lady in the bed next to me, they were all in quite a flap, until they heard me say "more cortisone".  Then I was monitored for the rest of the night, and the other lady didn't get any sleep. I was discharged some ten days later.

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