G'day from rural Central Queensland, Australia.

Whilst I would rather not be writing to this forum I'm glad I've found it and, it's somewhat
reassuring to know that there's such a resource for folks diagnosed with Wegener's ...
(I know we're not call it that but I can't pronounce - Granulomatosis with Polyangiitis )

On reading many of the intro posts it's like seeing a visual reflection of what is exactly has
just happened to me -

I'd turned 60, NEVER been in hospital or have any more serious than a cold or flu and
not taking ANY medications. I had a very active physically demanding job, we live on a
decent sized rural lifestyle block of land where we try to be as self sufficient as possible
which takes hard work, I kept myself in shape, ate well, didn't smoke and drank little then
hey -

A few months ago I just started feeling not quite right, I knew I was knocking on a bit
but this was odd. Like many of you it started with solid crustations from my nose
followed by bleeding. I starting to feel a bit fatigued and my legs hurt like hell when I
was carrying any heavy weight, so much so that when I squatted down it was bloody
painful to get up. A few weeks later my sinuses started to hurt and I totally lost hearing
in my left ear, I was also feeling more and more and more weak so I knew something
was really wrong.

In rural Australia there is a very rare sight and that is a bloke in a Doctors waiting room
and I'm ashamed to admit I was one of them but there was something wrong so I knew
I had to see a GP.

The Doctor diagnosed sinusitis, prescribed antibiotics and steroids for me she also
(very diplomatically) pointed out, my age the fact I wasn't on any sort of medications
and that I hadn't seen a Doc in years so maybe it would be wise to do a full check up
on me, bloods, urine ... fine ok - two days later I got a call from the Doc calling me in
as she had the blood and urine results back and was concerned at what she saw, this
truly was when the blur started, she told me a lot of information which really didn't
mean much but she also wanted to do more exhaustive blood urine testing ... fine ok
three days later I got a call from the Doc recommending that I attend a hospital
Emergency Room since the more exhaustive testing had shown very concerning
levels of heavens knows (as I said it was getting blurry now). I really couldn't see why
I should go to the ER so I declined. I honestly would have felt like a fraud as the
5 days of antibiotics and steroids was making feel better. Next day another call from
the Doc saying she had been talking to the Hospital Docs about my condition and
now she, along with the Hospital Docs insisted I attend the ER, clearly something
was very wrong. This scared me so my pigheadedness was put aside and my wife
drove me and my overnight bag 100 kms to hospital.

I was in ER for approx. 8 hours seeing lots of Docs, describing how I was feeling
and saying that I was feeling like a fraud being there, clearly they were concerned.
I was admitted as an inpatient and for the next 2 days gave enough blood to keep the
vampires of Transylvania fed for a year and endlessly peeing into small jars. On the
third day in hospital I was given the news that I had contracted ? Wegener's and that
it was targeting my Kidneys, the renal (Nephrology) team then took control of me.
The head honcho of the team told me he would need a Kidney biopsy but was going
to start treatment immediately. I was put on a steroid IV drip and started taking
Cyclophosphamide orally along with a number of other drugs to control what my
body was about to get hit by.


Well the rest as they say is history. 5 days later I was released from hospital with the
gratifying news that the medical team were happy they appeared to have arrested the
Kidneys destruction but it was only the start of at least, a short term life changing
experience.

Two weeks after being diagnosed I'm home and life has changed already. I'm now
taking 10 pills a day, one of them has caused me to become diabetic (although I'm
told this will revert when I stop taking the offending drug). I've given up my job
as it involved so much people contact (the chemo drugs I'm taking has/will blow
away my ability to fight infection and I'm not prepared to take that chance ) I'm
lucky, financially I'm set and don't need to work. We kept a lot of chickens on our
lifestyle block, they've all gone, I could not in all conscience watch my wife who's
63 do all the maintenance of the flock.

I'm told it's likely I'll be on this cocktail of drugs for at least a year or two and there
are no guarantees ... but I am a very positive person and I will be eternally grateful
to the medical teams that have brought me to where I am now. I am so pleased that
they found out what was wrong with me, just not pleased what they found out.

I look forward to periodically checking in, following folks progress and comparing
notes.