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Viewing 9 posts - 31 through 39 (of 39 total)
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  • in reply to: frigtened by possible severe irreversible side effects #23660
    countless
    • Topics: 6
    • Replies: 39
    • Total: 45
    • Recovery Champion
    • ★★★★
    @countless

    Yes I am looking forward to start of treatment, fingers crossed it will be shipped tomorrow, worried while waiting. Trying to figure out whether part with some money and have abdominal ultrasound asap or try to get it on the NHS, tough call


    Diagnosed September 2016.
    1b
    ALAT in 40s.
    VL 460 000
    Fibroscan 12.5
    Start of treatment 18/10/16
    Wk 2 VL 145
    Wk 4 VL detected unquantifiable
    Wk 8 VL detected unquantifiable
    Wk 12 undetected
    week 30 after eot – undetected

    in reply to: labs and their techniques? #23645
    countless
    • Topics: 6
    • Replies: 39
    • Total: 45
    • Recovery Champion
    • ★★★★
    @countless

    Dear Dr.Freeman
    As you mentioned that very few have normal or near normal liver function tests and as I am one of those I wondered whether you have observed any particular traits of disease which presents with LFTs being normal. My ALT is 45 , viral load about 400 000 , no symptoms but fibroscan is 12. Is there anything that could be read into this unusual combination or it is of no relevance? Thank you.
    If anybody else has a clue the replies are welcome.


    Diagnosed September 2016.
    1b
    ALAT in 40s.
    VL 460 000
    Fibroscan 12.5
    Start of treatment 18/10/16
    Wk 2 VL 145
    Wk 4 VL detected unquantifiable
    Wk 8 VL detected unquantifiable
    Wk 12 undetected
    week 30 after eot – undetected

    in reply to: frigtened by possible severe irreversible side effects #23637
    countless
    • Topics: 6
    • Replies: 39
    • Total: 45
    • Recovery Champion
    • ★★★★
    @countless

    I think it is a symptom of a situation in which loss of control is mixed with physical vulnerability. In my case a huge fear for my career is in mix as well , my heart sinks every time I see a letter that I do not know where it comes from or a caller ID which is unknown.
    I had a massive trauma 20 years ago and after that one I could not watch TV at all first as everything was just too stressful. The next boot of vulnerability happened after I had my daughter. I remember being in a hospital, coming across an article in a nespaper about indian woman that was beaten so badly for fiving birth to a girl instead of a boy that she was unconscious for a while and her baby died because she could not look after her. I dissolved in tears at reading it and until now when I remember that article Ibstart crying. Do not think it all was hep c related..


    Diagnosed September 2016.
    1b
    ALAT in 40s.
    VL 460 000
    Fibroscan 12.5
    Start of treatment 18/10/16
    Wk 2 VL 145
    Wk 4 VL detected unquantifiable
    Wk 8 VL detected unquantifiable
    Wk 12 undetected
    week 30 after eot – undetected

    in reply to: frigtened by possible severe irreversible side effects #23616
    countless
    • Topics: 6
    • Replies: 39
    • Total: 45
    • Recovery Champion
    • ★★★★
    @countless

    In my case decision was very easy. Once diagnosed I found hepctrust website , fixhepc was mentioned there. The first healthcare worker I spoken to since diagnosis was proactive, given a phone call to a hospital department where she was going to refer me , made enquiries and had medicine sourced from abroad mentioned to her by whoever she spoken saying it was genuine. At no point I doubted I want it treated or thought redemption trials is in any way inferior option. It will not mean I will not get treated as I am far more afraid living with it and dying from it.
    It is just that I have fear of everything at the moment… But thanks to all your replies I am far less afraid of this particular issue now.


    Diagnosed September 2016.
    1b
    ALAT in 40s.
    VL 460 000
    Fibroscan 12.5
    Start of treatment 18/10/16
    Wk 2 VL 145
    Wk 4 VL detected unquantifiable
    Wk 8 VL detected unquantifiable
    Wk 12 undetected
    week 30 after eot – undetected

    in reply to: frigtened by possible severe irreversible side effects #23607
    countless
    • Topics: 6
    • Replies: 39
    • Total: 45
    • Recovery Champion
    • ★★★★
    @countless

    Written you an email. :)
    Off to play squash now
    When I am doing mundane activities like sports , parents evenings , movies watching , dancing I forget life is finite ..


    Diagnosed September 2016.
    1b
    ALAT in 40s.
    VL 460 000
    Fibroscan 12.5
    Start of treatment 18/10/16
    Wk 2 VL 145
    Wk 4 VL detected unquantifiable
    Wk 8 VL detected unquantifiable
    Wk 12 undetected
    week 30 after eot – undetected

    in reply to: frigtened by possible severe irreversible side effects #23596
    countless
    • Topics: 6
    • Replies: 39
    • Total: 45
    • Recovery Champion
    • ★★★★
    @countless

    I am very sorry to hear about your friend. I guess there is nothing one could say or do in times like that. Hope their remaining time is as good as it can be.Hugs.
    Re support – I thought you have not gone into details , I wondered whether they known you were ill wihout specifying what with.
    With both of us leaving in the UK and me travelling to London for seeing a doctor I thought you could advise me on some uk/doctor specific issues, you may save me some of the mistakes which I am bound to do. May be using private messages facilities on this site or by phone? Or may be even meeting in person once I am in London. I am 43, have a daughter who is 11, father who is 87 and lives with us, cat, rabbit and a boyfriend who just moved in with me 2 weeks before my diagnosis If you would rather not I will absolutely understand. #flower


    Diagnosed September 2016.
    1b
    ALAT in 40s.
    VL 460 000
    Fibroscan 12.5
    Start of treatment 18/10/16
    Wk 2 VL 145
    Wk 4 VL detected unquantifiable
    Wk 8 VL detected unquantifiable
    Wk 12 undetected
    week 30 after eot – undetected

    in reply to: frigtened by possible severe irreversible side effects #23564
    countless
    • Topics: 6
    • Replies: 39
    • Total: 45
    • Recovery Champion
    • ★★★★
    @countless

    Morning London girl #flower
    Did they know at work you were ill?
    Do you have good support network in real life?


    Diagnosed September 2016.
    1b
    ALAT in 40s.
    VL 460 000
    Fibroscan 12.5
    Start of treatment 18/10/16
    Wk 2 VL 145
    Wk 4 VL detected unquantifiable
    Wk 8 VL detected unquantifiable
    Wk 12 undetected
    week 30 after eot – undetected

    in reply to: frigtened by possible severe irreversible side effects #23511
    countless
    • Topics: 6
    • Replies: 39
    • Total: 45
    • Recovery Champion
    • ★★★★
    @countless

    Thank you very much for your clear and informative post, james freeman.
    Rememberdecember , I had to stop work immediately because of department of health policy. There is no arguing with that one. On top of it I am self employed so sick payment is doubtful and not going to be for long.
    Nature of my work is such that eliminating EPPs would present a major drag for proper functioning of one company I work for and would been plain impossible with two others. Besides the level of publicity the issue would get while organising limited duties would be catastrofic as well . Apart from it it would mean arguing with a department of health that the directive they have can be twicked if EPPs eliminated. Even if I am successful in it which is a no mean fit as you imagine it will take so long to achieve I would likely either be SVR by that time or dead. By the way the rules say I have to wait 6 months after finishing treatment and achieving negative pcr to have another negative test and only then I would be allowed to work…


    Diagnosed September 2016.
    1b
    ALAT in 40s.
    VL 460 000
    Fibroscan 12.5
    Start of treatment 18/10/16
    Wk 2 VL 145
    Wk 4 VL detected unquantifiable
    Wk 8 VL detected unquantifiable
    Wk 12 undetected
    week 30 after eot – undetected

    in reply to: frigtened by possible severe irreversible side effects #23493
    countless
    • Topics: 6
    • Replies: 39
    • Total: 45
    • Recovery Champion
    • ★★★★
    @countless

    Thank you all
    Just to clarify – treating it is the only option I have considered. It just is s scary thing to face – loosing one’s eyesight.
    I understand about forums from which people who put the issue behind them move on. Exactly 12 years ago(there must be something about that Chinese zodiacal 13 year cycle !) I was diagnosed with cancer of stage 3 being single mother of 2 yo child, no savings and no right to public funds (could get medical help for free though). I swear it was easier for me back then! Or may be I forgotten just how bad it was… I digress – so back then I been on the forum of fellow unlucky ones for quite a few years. Then they changed something with the website so I could not log in with my username so I never got back and stopped replying questions , suggesting options and giving hope that that fully functional happy survival for many years is there.
    Thank you again for your kind words , I guess you all been in similar situation , I been sobbing for the last couple of hours(a very unpleasant phone call re possible other job for me to do was the last straw) and that with me being ” as hard as nails” and ” as determined as a train” does not happen often so sympathetic ears are very appreciated.


    Diagnosed September 2016.
    1b
    ALAT in 40s.
    VL 460 000
    Fibroscan 12.5
    Start of treatment 18/10/16
    Wk 2 VL 145
    Wk 4 VL detected unquantifiable
    Wk 8 VL detected unquantifiable
    Wk 12 undetected
    week 30 after eot – undetected

Viewing 9 posts - 31 through 39 (of 39 total)