ANCA C vasculitis

Hi. In 2009 my husband was diagnosed with anca positive vasculitis. It attacked and destroyed his kidneys. He has peritoneal dialysis using a machine overnight. For 2 years he had a cough on which antibiotics had no effects. He started passing blood in the small amount if urine he could pass. He coughed up blood. He was referred to Urology and also Thorasic depts. Meanwhile vasculitus markers were 500 plus and were ignored. In May he was seriously ill and admitted to hospital with pulmonary haemorrhage. Vasculitis caused. Now on steroids and chemo every 3 weeks until November. I was shocked to find out (after all this) the markers were so high and ignored in favour of other investigations. Is this what vasculitis does? We were told this type attacked kidneys and would not return as he has no kidneys. What is the prognosis with vasculitis like this? Thank you for taking time to read this. Sorry its long and drawn out.

Susan.

5 Replies

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  • Hi Susan,

    Your post about your husbands experience made very sad reading. If I understand you correctly because the Vasculitis had effectively destroyed your husbands kidneys the hospital didn't feel he needed active treatment and didn't monitor him for ongoing disease, despite symptoms and increased blood markers?

    I am not surprised you are concerned about his prognosis. Unfortunately much depends on the damage done whilst his Vasculitis was active and untreated. I hope at the very least the Hospital has apologised and launched a Significant Event Analysis ( SEA ).

    Hopefully the chemo and prednisolone will bring about remission. It's difficult to be more specific without more information. Is your husband still being treated at the same hospital and have they sought advice from a multi disciplinary Vasculitis Clinic such as Addenbrookes or the Hammersmith in London?

    If you would like to discuss things in more detail then the VUK helpline is staffed with volunteers knowledgable about Vasculitis and its treatment. The phone no. Is 0300 365 0075 or e mail john.mills@vasculitis.org.uk.

    Hopefully you will get some more replies from people with personal experience of lung and kidney symptoms.

    Best wishes

    Keyes

  • Hi Keyes.

    Thank you so much for your reply. The information will be very helpful. The renal consultant said "We made a wrong decision, sorry." We now attend vasculitis clinic at the same hospital as from beginning of July. I have only now felt able to talk about this and will use the info you have given to me. Thank you.

    Best Wishes Susan.

  • Susan, I have sent you a message.

  • Dear Susan,

    I have to say that I'm glad that 'The consultant said 'sorry'' and that makes it all alright, does it? At least 'they' seem to have found out, the problem, now-small graces, and all that.

    I read the rest of your post, with some interest, as my experiences were/are similar. I collapsed, in London, nearly twenty years ago (May 1997) and was taken to University College London Hospital-very close to death. Thankfully I was then taken Upstairs, rather than down stairs (the Mortuary), where I was diagnosed. I was released, into my mother's care, in the August and given only a few moths to live-'definitely dead' by Christmas.

    I had a kidney transplant, two years ago-after four years on haemo-dialysis (I believe that is the right spelling-my 'checker' doesn't know it). So basically, unless ghosts are much better, at typing, than we all think.....I AM still alive!!!!! Admittedly, and I am extremely grateful for this, my doctors/consultants/surgeons-not to mention all the drugs that I take-are keeping me alive (If you even wondered where all the NHS money is spent, well ME probably!).

    Do contact John & Susan Mills-Susan 'posts' here as 'susym2u'-or something very similar-or via Vasculitis UK- jandsmills@btinternet.com-. Have you looked at the Vasculitis UK website? If not please do-which is, a lot, politer than 'If Not Why Not'!

    Please don't worry that your 'post', was, as you put it, 'Drawn Out'. It was rather like when someone, who I won't name, said that she (and it was a girl) apologised for 'ranting'-we all said that she could 'rant' as much as she needed to. The important thing is that you express your views/experiences, to us all.

    Anyway, talking of rambling, I have 'rambled on' long enough now.

    Sending all our best wishes AndrewT

  • Hi AndrewT. :D You certainly have a sense of humour and I am sure that has strengthened your

    will- power . It is brilliant that you had a transplant. Robert isn't on the waiting list as they say two years have to pass vasculitis free. It did but then he was told he is is overweight at 112kg and must get down to 100kg b4 he is considered. Then this flare-up hit him.

    Thanks for the help you have given, this will help on Tuesday when we see the consultant. Will keep you informed Thank you. Susan.

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