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Thread: Just diagnosed from Queensland Australia

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    Default Just diagnosed from Queensland Australia

    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.

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    Default Re: Just diagnosed from Queensland Australia

    Welcome Rob.

    Your story very similar to most on this site with classical initial symptoms of Wegs. So glad you put the pigheadedness aside and got that diagnosis early. Glad you found this site. Some people do come off the drugs after a few years but many like myself, have been told that we will be on the drugs for life. Even on the drugs I have had about 4 major flares since diagnosis (2008) and a few minor ones but with close monitoring by the doctors, my own knowledge of the disease, educating myself on the effects and side effects of the drugs used to keep me in remission and also listening to my body, I am still here though I am forced to live a quiet life since diagnosis. I am unable to work or travel but still able most days to look after my house, cooking and on good days get out to the shops. Others have a worse quality of life than me, others much better and are able to continue work and travel. We are all different.

    Wish you all the best on YOUR journey with this disease.

    Rose
    Last edited by Rose; 03-15-2019 at 05:05 AM.

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    Default Re: Just diagnosed from Queensland Australia

    Welcome, Rob!!

    Glad you found us, but sad you had to.

    Iím 8+ years in with our dumb disease and have done pretty well managing it. Some of the key lessons for me have been:
    > Become the manager of your treatment team. All my docs know that my rheumatologist (one of the worldís best at treating vasculitis) treats my GPA. They treat anything else. I keep everyone informed about what others are doing to treat me. Both hospitals I use have electronic record keeping and messaging. All my doctors can see my rest results and after visit summaries.
    > Eat healthy. I eat very little processed/convenience food. I eat more fresh fruit and vegetables, natural fats (whole milk, butter, extra virgin olive oil), whole grains, fish (salmon and tuna), as well as beef, lamb, pork, and poultry.
    > Get some exercise. I was in pretty good shape before GPA hit. It took a bit more than a year to get my physical fitness back. I walk 2-4 miles 3-4 times a week and participate in a Silver Sneakers exercise class twice a week. (Iím 72 years old.) I think being fit helps me keep the disease at bay and provides a sense of well-being.
    > Donít be afraid to ask your doctors why they are prescribing a medication or ordering a new treatment. Ask especially about drug interactions, side effects, and how you should feel during and after treatment. The only stupid questions are the ones you donít ask.

    I hope you continue to improve. Keep us posted about your progress...
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: Just diagnosed from Queensland Australia

    i am very impressed that your doctors were able to figure out the right diagnosis so quickly. Many of us went for years seeing various doctors who gave us no help.

    Did your hearing come back? Mine never did but the BAHA does help a lot.
    Last edited by drz; 03-16-2019 at 10:55 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Just diagnosed from Queensland Australia

    Hi Drz,

    Yes my hearing did come back but, since I've been put on the cocktail
    of drugs I'm intermittently losing it then it comes back. The Docs have
    intimated it's a likely side effect from the Chemo drug they've put me on.

    Regards

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    Default Re: Just diagnosed from Queensland Australia

    Thanks Pete for your words,

    I'm still a bit shocked and getting my head around it.

    What you say makes huge sense and it's how I've lived lived my life already, ate well, kept in shape ... and, it's certainly how I intend to carry on, I just need to educate myself in areas I've never come across i.e. diabetes, side effects of chemo ...

    I'm very much a read and learn person and whilst in hospital when the drugs started coming, I asked for any information sheets of what I was putting down my throat. All I can say is that the nurses / doctors went out of their way to supply me with fantastic information sheets (although I still struggle to pronounce some names).

    As I said in my intro post I was a pigheaded bloke as far as health checks were concerned but that changed 2 weeks ago. I FULLY trust the medical team (even though it is a smallish regional hospital in country Queensland) who are looking after me and I fully intend to comply with their recommendations.

    Regards

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    Default Re: Just diagnosed from Queensland Australia

    Hey Rob, its a bit of a shock, when you have worked hard all your life, and out of the blue, a spanner gets thrown at you. You are very lucky that you were diagnosed so quick, most people get miss diagnosed, and by the time someone has worked it out, a lot of damage has occurred, it took my doctors 3 months, my story is a little similar to yours, and Im a lucky one (I live in northern NSW), cyclophosphamide is used to suppress your immune system, (as its our immune system that is trying to take us all out) and try and control it quick, it was described to me when I was first diagnosed as using a sledge hammer to smash the disease down, to lessen the damage it can cause, you should be able to get retuxamab( this drug also has many other names) as it has been listed on the PBS ask your Doctor about it, It is not as harsh as cyclophosphamide, but they may use this to get some control over it and then put you on something else.
    Read as much as you can here, as there is a lot of info here, and the members here can tell you almost anything you want to know about this disease, they have helped me immensely, all the best in your journey, If I can help in any way, let me know.

    Regards Woz...

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    Default Re: Just diagnosed from Queensland Australia

    Hi Rob, welcome!

    Your experience was very similar to mine. I was 49 and had been very healthy up to that point.

    I agree your doctors did an outstanding job of diagnosing. It gives me hope the disease is getting more recognition.

    Cheers!



    Sent from my iPhone using Tapatalk

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    Default Re: Just diagnosed from Queensland Australia

    Hi Woz,

    Thanks for your words and offer of help, I certainly intend to read as much as I can. Still a bit in shock, off to see the kidney team on Monday to discuss the most recent blood /urine so hopefully even at this early stage they'll have positive news for me. I can't thank the GP/medical teams for what they did so swiftly for me.

    Regards

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    Default Re: Just diagnosed from Queensland Australia

    Hi Keith,

    The medical team who diagnosed / looked after me truly did an amazing job. I think the GP who I mention was really on the ball, she picked up and pursued the crazy blood test results she was seeing. I will be eternally grateful to them all.

    Take care

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