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

    Sorry to hear of your experience, I to had full blown Wengeners, my GP sent me to hospital and fortunatley they admitted me .That same night i was given blood infusion and antibiotics i spent a month in my local hospital then was sent to a renal specialist hospital for a short while ,after 16 months treatment things have improved a lot although I still have lung and kidney damage but with some improvement.

    You will find the kidneys do tend to improve with treatment.

    All the best with your recovery things do get better even if we dont get back to fully our old selves.

    Fiona

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  • Posted

    Thank you for the reply, Fiona. Sorry for your experiences too with this disease.

    Did you have renal failure?

    Had you had previous good health before WG? Do you now suffer the fatigue that WG is synonymous with?

    I try to drink as much water as possible to keep my kidney active.

    Ian

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  • Posted

    Dear Ian,

    I think you get the award for the amazing recover of all! You must have been to hell and back. Your family too. My kidneys got to 40% function and I have remained like that. I had 7 days of plasma exchange and 3 units of blood WG now for 2.5 years.

    I have no fatigue what so ever and the only thing I have is annoying nasal crusting on one side. I am as fit as a fiddle and I road bike alot. Im going to ride from Aviemore over the Lecht to Ballater to raise money for Vasculitus Research in Aberdeen! When I read your story you are such an inspiration and I think I know now just how lucky I was to be diagnosed when I was.

    My friend has had 2 transplants and she has had WG for 27 years Hearing her story and yours amaze me of your strength to keep going . Best wishes Debbie

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  • Posted

    As I was admitted so quickly I hadnt gone into full renal failure, my health before was not too bad, i had a lot of sinus problems and got out of breath quickly, rashes on legs and hand usual joint pains things that we all think as normal until they all come together.

    Good luck in your recovery.

    Fiona.

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  • Posted

    Hi Fiona.

    How are you now with WG have you any symptoms still or are you like you were before being ill? Debbie

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  • Posted

    Hi Debbie, Hope you are well.

    i am a lot better than I was but cant seem to get past the stage of exhaustion when doing simple things like putting washing on the line getting washed and dressed etc, im ok walking as long as I go at my own pace and dont go too far, still got my constant cough and breathless which im told nothing can be done about but I am very grateful I have come as far as this.

    You seem to be doing very well Im pleased for you.

    take care.

    Fiona

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  • Posted

    Hi Fiona and Debbie - Thank you both for your comments.

    Fiona - You still have a cough??? Is it constant?

    I had a dreadful cough just pre-diagnosis and then came the blood from the hemorrhaging lungs, but no cough since diagnosis and treatment. I now have a chronic problem of my damaged lungs continually producing sputum (sorry) which is frustrating, but no cough. And of course, breathlessness especially with the mildest of exertion.

    Debbie - I had a Raleigh racing bike in the early 1980s and although I never raced, I trained very hard. I used to do 50 to 60 miles a night after work. I loved it and I honestly believe that the workouts I gave my body away back then (especially my lungs and heart) stood by me during my illness. I'd love to be able to ride from Aviemore over the Lecht to Ballater too! Maybe 25 years ago - LOL! Good luck with your project to raise money for Vasculitus Research in Aberdeen!

    Thanks again to you both for your replies! Ian

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  • Posted

    Hi Ian,

    I do believe you are right about being fit before illness which made you strong. I live in a valley so hills are all around and before my kids I was a keen and fit Mountain biker and I had good muscle strength and lung fitness. My lungs were bleeding too and I was shocked of my hanging skin and no muscle and in a very short space of time. My doctors say they didnt think I would recover as well as i did . I lay in that bed thinking I will never ride a bike again. And it hurt that I once was so fit. After a year I gave my backside a kick to get fit again and the only way I knew was a bike. I tried out on my trusty moutain bike but it was so hard.

    I thought getting a new one may give me motivation so as i always rode Cannondale I bought a CAAD 8. I have gone from strength to strength and the base fitness was still there. I felt free and so alive and thankful that I was still here to enjoy my surroundings whilst out riding. I have boosted my muscles and eat to strengthen my bones to counteract the Pred sideaffects and if WG dares appear again Im fit for a fight. My lung fitness is great and I now think that exercise has boosted my energy. I am now a single mum with 2 small kids and i work nights so I need everything I can get. Haha. I took the kids to Aviemore last year and was inspired by riders on the Lecht and vowed I would do it this year. Whats better than raising money doing something you love. Just hope it is a clear day to get the best of the scenery. Ian if you are fit enough to get your leg over the top tube and sit on the saddle give it a go. I have alot of nasal crusting which is a pain but 3 miles into a ride it clears. you never know it may clear your lungs and make them stronger.

    Debbie x

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  • Posted

    Hi Debbie...

    Yes, that's a good term you use \"base fitness\"! It's the same I suppose with any serious illness but with WG being such a vicious disease, you need all the help you can to fight it and being healthy otherwise is a necessity.

    How far will you be cycling? I live in Northern Ireland and I'm ashamed to admit that I had to look up Aviemore etc. Now I did know it was Scotland and my geography in general is good but I see now it is west of Aberdeen.

    My wife and I were actually recently talking about maybe getting bikes to get me more exercise! So you never know! Maybe I'll cycle at Aviemore sometime in the future. Sounds like wonderful scenery!

    Best wishes - Ian

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  • Posted

    Fantastic Ian,

    If you were a real enthusiast years ago imagine the thrill of getting back on your bike and it will mean so much more now as you will appreciate it more. When I started on my road bike it was hard but I found an 11 mile route and at the start it was awful. I stuck at it for 2 weeks and I rode hard through the pain then it became easier and I got faster. I slowly built up and I was riding 25 miles with ease and hammering the climbs as you would have done years ago. My lung fitness has improved and my stamina too. Nose clearer.

    This is the best time to get a bike as its so light at night. You never know it might be the start of a whole new you.

    Look on the Cairngorm cycle challenge in Aviemore. Its only 50 miles but its very steep as it peaks at the Lecht Ski Centre. With every climb there is a downhill and thats what I keep telling myself anyway. Good luck and I will wait with anticipation to hear about your cycle comeback!!

    Get a Lance Armstrong biography and read of his amazing recovery from Cancer I did and he inspired me I'm sure finishing the Lecht will be like winning the tour de france. Good Luck Debbie

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  • Posted

    Hi Debbie...

    Another great term from you after \"base fitness\". Now \"hammering the climbs\"! I remember my nemesis. A twisting never-ending climb just like you get in \"The Tour\"! When I eventually began to hammer it regularly I felt great!!

    My cycling buddy of all those years ago came to visit me in hospital when he heard of my illness. I was finally recovering and he bought me a book to read. Guess what he bought...Lance Armstrong's biography. It's in the cupboard. I have never read it but I will have to now! LOL! Ian

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  • Posted

    Hi Ian

    Enjoy the read! The determination of that man and his will to carry on regardless is inspirational. He is very bloody minded but if thats what it takes then all power to him.

    If you read that you will be on your bike in no time. I was out yesterday and did 25 miles in that wind. It was tough and I had to dig deep . I feel if I can cycle these miles then I remain well. When Im out I always think of how ill I was and it reminds me of how far I have come and I take comfort in that. Let me know how you get on.

    Debbie.

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  • Posted

    \"25 miles in [b:1207f6d766]that [/b:1207f6d766]wind\"!\" That must have been tough!!

    Your determination is admirable. Keep it up!

    Ian

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  • Posted

    Hi Ian,

    Hope you are feeling better and that your kidneys and lungs are improving, you asked if I am still coughing unfortunatley I am still coughing a great deal and nobody seems to come up with an answer the only time I stopped was when i was on 60mg prednisolone as soon as it was reduced the cough came back, thankfully my kidneys are recovering well.

    Hope you continue to make progress.

    Fiona

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  • Posted

    hi all ,

    fiona i am the same and it is anoying the cough that wont go away a feeling in my chest that i have got a fur ball stuck there for want of a better way of putting it. and that horrid feeling of doing anything with out feeling you have run a marathon. i also when i go over doing things have a hot sweat where my head will just sweat so much its unreal on the posative side i have had wg for 3 and a half years now and i am alive and loving life take care all jill

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