Full-blown Wegener's Granulomatosis

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Hi All...

I've read a lot of stories here but wonder did anyone have experiences such as mine. I was hit by an express train called WG.

I'm 53 and retired on ill health. I was suddenly very ill in 2005 having been FINALLY diagnosed WG. I had been healthy all my life.

I spent seven-and-a-half months in hospital. I was in Intensive Care for three-and-a-half of those months - in a coma for about a month. I became paralysed from the neck down with gross myopathy (lost 4 stone) and had a long rehab with horrendous physio. I'd had kidney failure requiring dialysis (I was born with only one kidney), heart failure, end-stage lung disease, liver damage, collapsed lung (twice), pneumonia, pleuresy, C-diff and other things I forget now. I was on my back for 6 months paralysed with a feed tube, catheter etc. Horrendous! I had numerous blood transfusions.

The most upsetting thing is that my GP (after 4 months of varying unresponsive symptoms) sent me to be admitted to hospital 2 weeks before I actually was admitted. I was turned away by the hospital - if I hadn't been, I would have got my treatment in time to stop the damage the disease did to me.

I was called \"The Miracle Man\" by ICU. My wife was told three times that I was dying. I was told once. I made a will. Scarey stuff!

I now live with my damaged lungs, kidney and muscles but am grateful to be alive against all the odds!

Ian

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  • Posted

    Hi Jill,

    Glad you are getting on ok inspite of the coughing, I have similar experiences with the , feeling as if my face is on fire and hot flushes, Ive improved a lot in the last 6 months just wish we could get a break from the constant cough it takes your breath away and is exhausting but like you am grateful to be alive with a reasonable quality.

    Take care.

    Fiona

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  • Posted

    Hi Fiona,

    You mentioned sinus problems prior to diagnosis. Do this still affect you?

    Ian

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  • Posted

    Hi Ian

    Yes unfortunatley I still have sinus problems but not so severe as before the treatment and I dont get sinus infections as much. Coughing is my biggest problem that never seems to improve even after 18 months of treatment. Everything else is a lot better.

    Hope you are continuing to improve the first few months are not very good then everything starts picking up.

    Fiona

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  • Posted

    Hi Fiona - Is your cough (to use the medical speak) \"productive\" ie producing phlegm? That's been my major chest problem. I just wondered also do you attribute your breathlessness to the lung damage or to just the general Wegener's condition? Are you still seeing any specialists, once-a-year or such?

    Best wishes - Ian

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  • Posted

    Hi Ian,

    Have just had my prenisolone increased to 40mg and more anitbiotics as I have a chest infection, yes my cough is productive, I havnt seen a chest consultant for about a year as they said most of the problem is damage related but my GP will refer me back if Im no better when I go back to him in a weeks time I seem to get about 2-3 infections through the year but never actually get rid of the cough.

    Hope you are keeping reasonably well, all other problems seem to be stable now.

    Regards Fiona.

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  • Posted

    Hi Fiona,

    Yes, I'm guaranteed a couple of chest infections per year too. Usually though I just get an antibiotic. My prednisolone has been 2mg daily for about 3 years now and no other meds. Sorry you've had the steroids upped again. What's been your lowest prednisolone level?

    Considering my lungs haemorraged and I had pneumonia, I think it strange that I too don't have a chest physician. I actually saw a chest consultant in June (privately) for another reason who arranged a CT scan of the chest as he was surprised I hadn't had one done since in hospital 6 years ago. They see the damage (scarring) which is causing the continual sputum. No need really to do anything more because as you say \"the problem is damage related \". Regards - Ian

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  • Posted

    Hi Ian,

    Its great to know that you are not on many meds.. I have been reduced to 4mg as a trial.. Had a chest infection which rapidy disappeared.. I to have perhaps 3 per year but I think that was the norm for me anyway.

    My consultant says I will probably never be off Azathioprine as my kidneys are damaged.. you give me hope to be off them.

    However I am doing the Lecht this Sunday and looking forward to it. I was out today and my Lung fitness has taken a battering with that infection. Hope you are still thinking of getting on that bike.. HAHA

    Debbie

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  • Posted

    Hi Ian,

    My lowest prednisolone has ben 7.50 cant seem to get below that, I see a Renal consultant & Reuhmatology regularly and respiratory now and again when i have chest problems that the other clinics think i need breathing tests or scans for. Unfortunatley like you the lung problems restrict your life a bit more as they cause so much breathlessness.

    Regards Fiona

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  • Posted

    Hi Fiona

    Just been reading your latest postings. We had visitors some months ago and one of them had a cold starting. They shouldn't have come really because they knew my immune system had been severely depressed due to wg medication. Anyway, my wife and I cought it, she got rid of it in a couple of weeks, but mine took about two months before it cleared, but it left me with a nasty cough, which has been very productive.

    I went to see the wg consultant last Wednesday 21st Sept at St Helier Hospital, Carshalton, but she did not make any reduction to my medication, which was rather disappointing. I told her about the cold and the resulting cough, wherein she gave me a chest examination and heard some crackling in my left lung. She sent me for an x-ray and a sputum test staightaway and I am now awaiting the results. I sincerely hope this is not wg starting up again!

    Hope you a making good progress Fiona.

    Sincerely - Mo x

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  • Posted

    Hi Fiona & Mo & Debbie : Hope you get sorted Mo. We with Wegener's really do have to watch for colds getting onto the chest. It's difficult avoiding people all the time unless we become a hermit. I run a mile (not literally after Wegener's) in the flu season when someone coughs or sneezes near me. Best wishes to you all! Ian
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  • Posted

    Hi Ian. Thanks for your comment on my recent posting. Like you, I try to avoid people with colds and run (I should say, walk) away when I am close to a person who sneezes, especially when in shops!! I am now waiting for the results of the chest x-ray and the other test and am hopeful it is nothing serious.

    I sincerely hope you continue to make good progress in you battle with Wegener's.

    Sincerely - Mo Grant

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  • Posted

    Hi everyone,

    I work in a care home with elderly people and have 2 kids so Im right in the danger zone.. My 3 year old had gastro flu this summer but I escaped that.

    Its usually chest issues that get me too. Don't seem to get head colds anymore since I have had WG. The steroid information says beware of Chickenpox.. my kids have never had it . Does anyone know why that is so risky?

    Ian, that article about me in the Aberdeen University mag is almost ready and I will forward it on..

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  • Posted

    Hi Debbie

    Glad to see you are still going strong. I don't get head colds since I went down with wg - this latest cold was on my chest for weeks and weeks, but it has reduced to a hacking cough. Like I said to Ian, I'm now awaiting the results of tests.

    I didn't realise that you were a university girl! I attended the City University in London and obtained an MSc! This was way back in the early 70's.

    Hope you keep on with cycling. I did time trials when in my twenties, so I know how hard competitive riding can be. In my day, we weren't allowed to use gears, only fixed wheels were allowed. It was very hard, I did 25, 30 50 and 100 mile time trials with fair results! Some French riders came over in the late 40's and rode in our time trials. They were given special dispensation by the NUC to use their gears and they did better times than the run-of-the-mill riders (like me!). When the mass-start racing started, which were originally opposed by the NUC, gears were then allowed.

    Regarding your query about chicken pox, I can only offer the comment that people taking immunosuppressant drugs are more susceptible to a severe form of the disease and a rare complication is encephalitis (inflamation of the brain). Corticosteroid drugs are also used to suppress the immune system, so the same risks apply to these. I hope this is helpful to you.

    Best wishes - Mo x

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  • Posted

    Hi all,

    Seems we are all in the same boat regarding chest problems Ive been told autoimmune diseases such as WG cause bronciectasis which is my problem the lungs lose there elastisity and produce a lot of mucous which causes the constant coughing I used to cough just in the day time but unfortunatley its now day and night which is very waring I dont seem to get colds but I do use first defence if I come in contact with anyone with a cold it seems to work well. Hope you all manage through the winter without any extra problems.

    Fioa

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  • Posted

    Hi Fiona (& all) : That's very coincidental that you mention bronchiectasis Fiona. I had a chest scan last month that confirmed scarring in my lung and a subsequent area of bronchiectasis at the site of the scarring. This is also then what's causing my very annoying sputum production and cough! I've had blood in my sputum now for 6 months and it appears it's coming from the site of the scarring. I was told that I have a chronic low-grade infection there and something has \"set it off\"!

    Look forward to the article Debbie!!!

    Ian

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