Just Diagnosed

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Hi all

just been diagnosed with Wegener's Granulomatosis and to be honest it was all just a bit of a shock for me and a nightmare for my wife and family.

It all started with a trip to the local GP to be told I had pneumonia take these antibiotics and it will clear up retured 7 days later same diagnosis change of antibiotics four days later still feeling S**t wife took me to A&E against my better judgement to be taken into ICU and placed into an induced coma during the early days my wife was told that on a scale of 0 to 10 I had a 9.5 chance of not comming out alive....

However after just under a month in the Hospital I'm out feel around the 70% good area thinking what the f**k happend still trying to get my head round everything!

So I'm here for knowledge and support that I feel I'm sure to get here thank you!

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4 Replies

  • Posted

    You poor thing :-( you will get support here everyone seems really lovely as I only joined a couple of weeks ago. I hear you when you say what the hell just happened to me I been living with it since 2013 and I'm still not coping with it.

    But I try to keep pushing on as I have 3 daughters

    Who love and depend on me. Chat any time :-)

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  • Posted

    Hi there, I feel for you (Dona43005 and 1wife2dogs). My lovely daughter was 14 when she was diagnosed last year and I HATE this illness, it makes me hurt inside that it feels like she has had the best years of her life stolen from her. On the other hand I thank my lucky stars that she got this illness now and not in the 1980s when she wouldn't have survived. It's a worry daily, which I'm sure you both face, as well as the physical exhaustion, the hair falling out due to the medication etc etc.....all we can do is hope. My daughter wrote the following and posted it, I hope it gives you strength...."Most people live in constant fear of some terrible event changing their life. For the chronically ill, this terrible event has already happened, and we have been let in on an amazing secret: You fight and you survive. There is no other way. You adapt, and your life changes, but in the end you go with whatever compromises you have been forced to make, whatever losses you have been forced to endure. You learn to balance your fears with the simple truth that you must go on living"

     

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    • Posted

      Oh wow that's so true hun I am glad they have meds for it we are very lucky that way.

      I hear you about the hair loss and it is so true we do just have to adjust and find a better way of doing things that suits us

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  • Posted

    So glad to hear you are now at 70%.  Omg I know this is a bad disease.

    My story is so long when I got ill etc but I wasn't admitted to hospital until I had pneumonia right lung and I came very close to dying myself, medication kept me alive and I have alot of faith, naturally very good doctors also.  10 doctors were taking care of me at 1 point, I was hospitalized for 2 weeks.  Was off work 2 weeks shy of 1 year.  Considering how some are doing with this disease I'm not doing too bad except meds wear me out and working full time.  I've talked to several doctors, no known cause for this disease, they have no idea why our immune systems go totally out of wack, I know it's crazy.  I hear you what the f*** happened?  I tell people I feel like I've been on a roller coaster ride and I don't like roller coasters.  Take 1 day at a time that's all we can do.  If you don't mind me asking how old are you, I'm 49 I got this disease when I was 48.  I was in good health, doing regular cardio weights etc.  This is all a complete shock to me also

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