First Symptoms: October 1990

Diagnosed: December 1991

I became ill in October '90, developing an irritating cough, whilst in Perth on an 18 month visit to a daughter. The local doctor treated me for sinus with Amoxil and nose drops.

Three months later on arriving back in Sydney, I was still being treated for sinus although I now had a very very painful nose. In the back of my head there was a crunching sound when I walked, also it was as if I had water sloshing around in my head, and my legs were beginning to feel weak.

The pain in my nose became so bad I couldn't bear to breathe and although the weather was hot, the air felt icy cold in my nose - so much so, I wore a scarf around my head and face. By this time, I was also deaf. I couldn't hear a thing for four months. Then my arms became very weak and eventually I couldn't do anything for myself. To sit in a chair was agony. I had to take to my bed.

We changed doctors for a second opinion and was sent to an ENT specialist who expressed fluid from my ears and gave me 'Keplex'.

My husband John and a neighbour had to carry me to the car when going to the surgery. Eventually John took me to casualty at the Blacktown Hospital and although many tests were taken, the only thing found was that there was no iron in my liver.

I was sent that evening to a specialist surgeon. My urine sample was thick and dark as mud. I was immediately admitted to hospital. This was 2 weeks prior to Christmas '91.

Again tests of all sorts then a blood transfusion. By this time my taste had gone haywire - food tasted like wet bread and all fluid except milk and water tasted like vinegar. At this stage my hands were shaped like claws.

But they still couldn't reason why - I was by this time, feeling perhaps it was me going off my head. All I wanted to do was cry. But a young medical student, Doctor Kowalski at the Blacktown was interested.

I was booked in for a lumbar puncture in February but Dr Kowalski was not happy with this and requested a hold till the last test was known. This test confirmed his suspicions that WG was present.

I was sent (by taxi) to Westmead hospital for an immediate kidney biopsy - at 8 oclock that evening (Xmas eve) I was told that I had WG and that my kidneys were damaged. Chemo started on Christmas Day.

Professor Stuart tried to explain WG to me - I was frightened at the prospect of taking chemo - but the good professor said I must have this treatment or die - 'your kidneys are damaged, another 24 hours and it will be too late even for dialysis' so chemo it was.

I had 15 chemos plus 3 years on Prednisone - 3 years on Bactrim.

I developed high blood pressure and take 25mg Renitic.

The weight went on - 65kg to 97kg in one month plus moon face, buffalo hump, hair thinning, warts, nausea and sweats.

I have to admit ( as at Dec96) I haven't felt much relief from remission as since all this, I still feel ill and tired with aching legs. I have been sent to hospital twice with suspected heart trouble, treated for angina and sent to a heart specialist who 12 months prior had diagnosed Graves (thyroid) disease.

I now also have osteoarthritis in my left foot and wrists and hands.

So now John, with his emphysema and his Raynards Syndrome, and I have picked ourselves up by the bootstraps - I have found a hobby knitting caricature dolls and John has his gardening.