Worried about my Dad

Hi everyone, my Dad was admitted to hospital last week because of high potassium levels in his regular blood tests for diabetes, his kidneys aren't filtering. He received the diagnosis yesterday after kidney biopsy of ANCA MPO Vasculitis and was started on steroids last night and starting intravenous chemotherapy today.

I live in India and my Dad is in the UK, firstly, I can't seem to find anything on ANCA MPO vasculitis and secondly, my Dad has rebuffed my offers to come over saying that the Doctor has told him he won't need anyone to look after him while he is receiving treatment.

I'm so worried and have a picture in my mind of him sitting sad and lonely and ill at home with no-one there.

I would greatly appreciate advice as to what effect the chemo & steroids will have (he's having 6 lots of chemo every 2 weeks) and also why my google search doesn't show anything under ANCA MPO Vasculitis?

Thank you so much in advance for any insights you can offer :)

Karen

16 Replies

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  • Hi Karen,

    Sorry to hear about your Father but glad to hear that he has a diagnosis and is starting treatment.

    The reason you can't find anything under ANCA MPO Vasculitis is that is only a description of the blood test that is positive, it's not the name of the variant of Vasculitis your father has ( there are 20 different variants ). ANCA is associated with 3 different types of Vasculitis ( Wegners Granulomatosis or GPA, Churg Strauss Syndrome or EGPA and Microscopic Polyangitis or MPA ). The variants that are associated with MPO are EGPA and MPA. EGPA is usually associated with late onset asthma and lung problems, it doesn't cause kidney problems as often as the other variants. MPA is more associated with problems with the kidneys. Has he been told what variant he has as this can be important in understanding what symptoms to look out for and can inform treatment decisions.

    Hopefully your father will respond quickly to treatment, much depends on how much damage was done before diagnosis and what can be reversed, also his underlying health and any other health problems he may have. Many people work whilst having treatment for Vasculitis.

    If you go to the VUK Website there is information about Vasculitis in general and the specific variants. I will find you some links. Meantime the most important thing is to make sure that your Father is being treated by a Consultant who has experience in diagnosing and treating Vasculitis as its a rare disease and experience counts for a lot.

    I hope this answers your question?

    Best wishes

    Lynn

  • Thank you :)

  • Thank you Lynn, that answers a lot. Dad is 74, he retired at 60 and spent the first year of his retirement nursing my Mum who had small cell lung cancer until she died. He is a brave and stoic man and even now won't admit that he's been feeling unwell. I just hope this won't hamper his treatment. Thank you again. Best wishes

  • I have never had cyclophosamide but I am sure that other people will be along with their experiences.

    Being too stoic isn't a good thing but to a certain extent the blood tests won't lie and he will be monitored very closely. I hope that his treatment is successful and he manages to get into remission. VUK have a helpline which you can phone or e mail for help or information. My e mail address is lynn@vasculitis.org.uk if I can be of any assistance.

  • Thank you so much for taking the time to reply to me and send the links Lynn, I feel much better informed.

  • Hi Karen

    I was diagnosed with wagers g last year was admitted to hospital and like your father was treated with steroids and cyclophosphamide.

    I then had to have cyclo administration at the hospital every month for six months as this disease damaged my kidneys.The treatment of intravenous cyclophosphamide edit me feeling a little sIck but was given anti sickness tablets and my hair thinned a little but all in all I managed to get through it like I'm sure your father will.

    My vasculitis is in remission now I'm still on steroids and a drug called myfenex and under the hospital seeing my consultant , I hope my post will help you with yours fathers condition and hope he has a speedy recovery.

    Sending my best wishes Elle xx

  • Thank you for your post Elle, I'm sorry you had to go through it but pleased and heartened to hear that the treatment worked and as you say you're here.

    Dad is 74, he has diabetes, pernicious anaemia and had a triple heart bypass 10 years ago. I suppose I do worry that these will have an impact on his recovery.

    Thank you again, your reply has made me feel so much better.

  • Karen your father sounds a very strong man to have gone through so much age doesn't mean a lot it's positive thinking that's what helped me. If I can help any more please don't hesitate to contact myself , you probably worry more because you live so far away in India but your dad is strong don't ever forget that. XX

  • Thank you Frankiepoos1. He is strong and very positive minded :)

  • Hi Karen, sorry to hear your Dad is unwell, I have just gone through this with my Mum.

    It sounds to me like your Dad's regular blood test may have picked up this problem before it manifested itself into further symptoms?

    If so this means he may have started treatment earlier then 'usual'.

    That can only be a good thing I think.

    The chemo and steroids will take a bit of getting used to, they both damp down the immune system to the point where the body stops attacking itself.

    In my Mums case, infections were the main problem during this treatment, your Dad will be closely monitored with blood tests but he should be aware that infections need to be treated quickly with appropriate medication.

    Is your Dad on dialysis? My Mum was on dialysis until the inflammation in her kidneys reduced. Ask the consultant if there was any kidney scaring on the biopsy results. Less scaring means less permanent damage to the kidneys.

    I hope everything works out well for you both, do ask any questions you have and I'm sure there will be people here that can answer you.

  • Hi Luggsey

    Thank you so much for your reply. It seems that they have caught it early and have told Dad that his kidneys will rectify with the treatment.

    He isn't on dialysis and they're letting him out of hospital today.

    I will tell him how important it is that he speaks up quickly about any signs of infection - thank you for the pointer.

    I hope your Mum getting better.

    Thank you again for your reply, it is much appreciated :)

  • Fantastic news for you if there is no permanent kidney damage, my Mum was in hospital for months following her treatment and made a good recovery with some nerve damage to hands,feet and mouth. Your Dad sounds like he is made of tough stuff!

    All the very best to you both.

  • My son has WG & has had 6 months of cyclophosamide in 2008 & 7 months in 2014. He worked throughout the treatment.

  • Mgtrob, thank you, that's good to hear. I hope he all is well with him now.

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