First symptoms: May 1991

Diagnosed: October 1991

It all seems so long ago - it began so innocently in May '91. I was playing netball and a ball hit me on the nose and my nose started bleeding. Even though it was only a tap, I thought my nose might be broken, so I stopped off on the way home at a locum. Without even looking at my nose he diagnosed sinus. This was to be the first of many incorrect diagnoses and so heralded my downward spiral over the next six months.

Over the next week my nose swelled and spread across my face, the slightest movement would start an endless flow of blood that took longer each time to stop. I then went to the emergency section and saw an ENT registrar who said I had a deviated septum and they couldn't touch it for two months. So I saw a private ENT specialist, Dr Bob Jackson and he whipped me into hospital to remove the cartilage in my nose. But what was supposed to be a relatively simple procedure turned into a marathon as they discovered an enormous amount of scar tissue and adhesions. After the operation, he berated me for not having told him that I had had previous surgery to the inside of my nose. I hadn't !! I had my pretty nose for about two weeks before it collapsed and left me with a saddle nose and my doctor with a lot of unanswered questions. Every week I would go into his office and he would have a dig around and copious amount of novocaine later - still no answers.

Around June '91, the soles of my feet became tender and I saw my doctor about this. At the time I described it as walking on the raw ends of my bones. He referred me to a specialist who after more blood tests, diagnosed Ross River fever and I was told to rest - which I didn't as I had two jobs at the time. One night I felt my leg begin to tighten and when I went to drive home, I discovered I couldn't bend my leg. So the next day I was back at my specialist and he informed me that Ross River fever affects the joints. I soon developed a blister-like rash all over my arms and legs, mainly near the joints so back I went to the specialist. He then informed me that it was nothing to worry about, it was simply a bad case of Ross River fever and may take awhile to get over.

The rash didn't go away so I contacted a dermatologist, Dr Lee. He took a biopsy and which showed a possibility of Sweet's syndrome and he prescribed prednisone. The rash started to clear, but as the weeks went on, the harder I found it to walk. By
September '91 I couldn't walk more than 20 metres without having to rest my legs for the rest of the day. In late September I went camping and decided to try a nature walk. I got down the hill but couldn't get back up. Eventually after two hours I made it up the hill. The same trip took my husband ten minutes. At this time I was beginning to tire very easily and spent most of the day sleeping but I still insisted on working part time.

At the start of October '91, my legs were permanently swollen, I couldn't bend them at all - my nose was almost constantly bleeding all the time - taking up to two hours to stop each nose bleed by packing my nose with tissues. I was seeing four doctors a week about different problems and my weight dropped ten kgs. By mid October '91 I had developed a hacking cough - a trip to my doctor and a subsequent Xray indicated pneumonia. I started to cough up red frothy blood - I knew this was a bad sign but decided to wait it out. However,this particular weekend was horrific. My temperature soared - I spent most of time in the bath either trying to cool down or to warm up my muscles. If my nose wasn't bleeding, I was coughing up blood.

So off to the Mater Hospital emergency section in Brisbane with Xrays in hand. They probed and scrapped every part of my body and took what seemed like litres of blood plus numerous Xrays of my chest. The verdict - massive pulmonary hemorrhage and renal failure.

I spent the night in a ward, sitting up with oxygen equipment on my face. I was attached to a string of machines to record heart, pulse and oxygen levels. They took blood gases every two hours and had two blood transfusions, a nose biopsy and a kidney biopsy which revealed granular material. My parents moved into a special room in the hospital which was very comforting for me. I was started on 1000mg of cortisone for which special clearance was required being such a large dose, plus 150mg cyclophosphamide, iron tablets and vitamin C. My ANCA was 2600. My mum had some Lourdes water and also a holy broach that had been blessed. Before I was wheeled to the intensive care area, a priest came and blessed me. The whole time I kept willing my body to get better and I tried to visualise this happening. And I remember thinking how unbelievable it was that my brain was fully functioning, but my body was giving up. But I did get better and I felt so relieved that my illness was finally correctly diagnosed - it was WG.

It took almost a year to get back on my feet. I had whacked on a massive 30kgs which was quite depressing - and developed high blood pressure. We were warned about the prospect of infertility in January '92. In the same month had our first attempt at IVF. Only three eggs were available so we were advised not to go ahead with removal. In March '92 we had a second attempt, however this time I had produced no eggs and that it was too late to use my own eggs.

January '93, entered menopause at the ripe old age of 25 and began HRT. I changed specialist and stopped prednisone at my
insistence.

March'96 - I developed problems with mental comprehension, mood swings and confusion. I was admitted to hospital for another kidney biopsy and tests. These tests revealed a high cholesterol (11.7) and triglycerides (17.4) related specifically to the HRT treament. The kidney biopsy showed one third severely damaged tissue, one third partially damaged and the rest healthy - but the good thing was that my WG was not active. It was decided to gradually take me off the cyclo but it didn't happen soon enough as in May '96 I had virus after virus and finally developed shingles. My doctor stopped the cyclo that week.

I officially went into remission that month (May '96) and so far so good . My ANCA levels still register but are now at 80.

January '97, experienced period of bleeding for 3 weeks in a row. Was investigated in February and a level 3 CIN or precancerous change was discovered. Underwent a cone biopsy and D&C. The oncologist gynaecologist told me that there are three risk factors to contracting this -

1) If you had an autoimmune disease

2) If you take immunosuppressants

3) If you smoke

I understand I am not the only one who has this problem.

Today (Sept'97) I have started a new career in Early Childhood Teaching - I play competitive and social tennis twice a week and walk three times a week with a walking group. I love travelling, bushwalking and camping and live a full life.

I still get tired, my joints continue to ache- but in perspective, it is a very small price to pay - and I feel that I have become a much better person