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As well as sharing experiences with our friendly online community, registered members are able to contact our experienced online team. The Centre is staffed during office hours and the online team aim to reply within 24 hours.

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Topic 'Today I am feeling' - managing emotions

Share how you are feeling and swap tips for managing stress with other members and the online team

  • 186 conversations

CLL & CVID

Started by Anonymous on 07 May 2015 at 13:29

Hi everyone, I was diagnosed with CLL in October 2010, since then I have been on watch and wait.  I had a bone marrow biopsy last October and was told that the invasion into my marrow was "not too bad" but that I also have CVID.  I live in Greece so have to travel a long was to the Haematology Unit at a Hospital in Athens.  My specialist is very good, top of her field, but she does not speak English very well - so I am in the dark about a lot of things. 

I have now been told that I need 2 operations on my back, one in May and the other in October.  I am very worried about infection and wonder could anyone give me any advice about whether I should have an infusion of antibodies before the operations.  I do pick up a lot of infections!!  Does anyone have both these conditions?

I would be so glad of some comments.

Comments (1)

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  • Picture of SusieQ
    From SusieQ  
    07 May 2015 at 15:50
    Edited on: 07 May 2015 at 15:55

    Hello,

    It sounds as though you feel understandably isolated - both geographically, and in illness terms, as you live some distance from your hospital (in Athens), and also have two medical conditions which put you at a bigger risk of developing infections. I admit, I had to look up CVID - and see from the Immune Deficiency Foundation (USA) website that it means Common Variable Immune Deficiency.

    Added to that, you're dealing with CLL (Chronic Lymphocytic Leukaemia), so have to be extra careful regarding infection risk, understandably.

    Regarding your back surgery, generally, spinal surgical procedures are accompanied by prophylactic antiobiotics, (given to prevent infection developing). I'm sure in your case the surgeons will be particularly careful to ensure you have good antibiotic 'cover' - as they'll be as keen as you to avoid you developing any infections post operatively. You may also, as you pointed out, need some pre-surgery I/V or subcutaneous antibody injections - and it sounds like your haematologist and surgeon will need to liaise about what is the best antibody protection for you pre-surgery.

    Meanwhile, I'm not sure how many people we have online with both your conditions, but have many who are trying to avoid infections...so will empathise with your natural concerns. I invite them to get in touch with you,

    If we can be of help and support too, don't hesitate to get in touch with Robyn or myself...

    Warm wishes

    Sue


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