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This is my first post although I have 'lurked' for a long time on behalf of my husband - Bob - who was diagnosed with WG in 1993. The first symptoms (which followed a stomach virus) were frequent nosebleeds followed by protracted ear infections which didn't respond to antibiotics. The doctor diagnosed sinusitis; but after months of deteriorating health, he became too ill to go to work. This was a man who hadn't visited a doctor in nine years and who enjoyed his career in IT!! The doctor's reaction was that people weren't usually ill enough with sinusitis to miss work. Precisely. After frequent contact with the doctor's surgery and various run ins with receptionists we were getting desperate. By this point Bob was so deaf that he had to use text in order to watch tv. Matters came to a head one evening when my husband started giving away his possessions - he felt he was dying. I made another call to the surgery and a doctor who was new to the practice came out to the house. She was wonderful! I credit Dr Warren with saving Bob's life. He was hospitalised and given grommets to restore his hearing. He was diagnosed with WG shortly afterwards.
At this point his kidneys failed but he avoided dialysis because his specialist had begun to use plasmapheresis (sp!). He was left with Stage 3/4 kidney disease and a 40% hearing loss. The twist to Bob's story is that his father was at the same time lying in hospital about 200 miles away and had also been diagnosed with WG! So although WG is not inherited - there is obviously in some cases a genetic predisposition which doctors and patients should be aware of.
Wegener's has had a major impact on both our lives. Bob's case was judged to be very severe and he has only very briefly been free of meds. He has had his lifetime dose of cyclophosphamide, has been on various other meds - currently azathioprine and prednisolone. Over the years he has had Menieres (vertigo), eye problems, gout, high blood pressure. The worst problem which is on going is the awful fatigue which seems to be part of WG plus kidney damage. He also reacts VERY badly to surgery - I almost lost him twice during the 7 weeks he was in hospital having his gallbladder removed! He was also very ill after surgery to remove half of his colon. Surgeons are not too keen to treat him.... I have no proof but feel the surgeries were brought about because of WG and that doctors are not sufficiently educated in treating patients with WG. Rituxin was suggested by his renal team but he was turned down - which has made me very cross. It was hinted that it was down to money.
Still, we muddle on and try to enjoy life and Bob retains his sense of humour (most of the time!). We have been on a few cruises and are going to America in September. I live in hope that there will be a fantastic medical breakthrough and that WG can be kicked into the long grass!
Wendy
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however, if you are from Australia, I didn't think RTX would be turned down due to money.
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