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Hi Chejai,
When you get that fibroscan, make sure you fast for a few hours before.
Nobody told me that before my first one & the results were worryingly high,
when I had my next one about a year later, I didn’t eat for hours before & the result was startlingly different, much less!!So, just in case nobody tells you, not sure if the doc’s have figured that out yet or not, maybe they warn the patients now, not sure.
Good luck anyway.
x
Well, FINALLY I got to see my GP now that she has finally spoken to the Specialist. Essentially, this is what she said he told her –
1. there’s no rush since I’m not ‘severely’ ill
2. why not WAIT for the PBS orals that the gov will approve in Feb 2016 (really???) and save $$
3. if i want to go ahead I have to see the Specialist; GP is not qualified to know about these medications, how to prescribe them or do the monitoring
4. I have to contact the RBWH clinic hep Nurse and discuss how to proceedAgain, I explained my frustration at being told in the past 5 yrs, I NEED treatment and not to put it off, I should get ready for the ‘new drugs on their way’ that will be available on PBS. I haven’t had a Fibroscan since early 2013 so who knows the condition of my liver, ok I’m not ‘severe’ or ‘dying’ but I’m fed up with being told to ‘wait’ while also being told ‘not to put it off’. I’ve only been with this GP a few months so she really doesn’t know me or my history. From the look on her face yesterday I don’t really think she gets it.
So, now a call to the clinic and see what the nurse says…..ahhhh
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HHey Chejai,
Sorry you’ve come up against another dead-end with your GP & the specialist…its the same thing so many of us were told, same old broken record.
Yeah I might not be “severely ill” either, but who wants to wait until they have sickened to that point? when surely its goitta be easier to be cured before that stage. It just does your head in, doesn’t it
inch: As for ‘Feb’, on the hepaustralasia boards they’re saying ‘May’ now – and who knows how much longer? Doubt the Govt is going to beat Gilead down to a price cheaper than 50K and then it will be triaged…and those not “severely ill” like you and me will be at the end of a bloody long queue.
Of course certain specialists will want to talk up the idea that only they are capable of prescribing & monitoring people…where’s the power in their status otherwise? but I doubt any GP in the country is going to be as experienced and knowlegable as Dr James. Find somewhere you can get a fibroscan, get your stats and get onto the doc…take the power back from those who would prevent you from having control over your own health.
To that end, I got the magic parcel from the postie this morning – incredible to think how much $ those two seemingly innocuous bottles represent! I feel so fortunate and grateful to all concerned, especially to members here and Dr J for his tireless efforts to help us all beat this scourge. Can’t wait tor January and the trial start (and I thought I was impatient before)
zhuk wrote:Hey Chejai,
Sorry you’ve come up against another dead-end with your GP & the specialist…its the same thing so many of us were told, same old broken record.
Yeah I might not be “severely ill” either, but who wants to wait until they have sickened to that point? when surely its goitta be easier to be cured before that stage. It just does your head in, doesn’t it
inch: As for ‘Feb’, on the hepaustralasia boards they’re saying ‘May’ now – and who knows how much longer? Doubt the Govt is going to beat Gilead down to a price cheaper than 50K and then it will be triaged…and those not “severely ill” like you and me will be at the end of a bloody long queue.
Of course certain specialists will want to talk up the idea that only they are capable of prescribing & monitoring people…where’s the power in their status otherwise? but I doubt any GP in the country is going to be as experienced and knowlegable as Dr James. Find somewhere you can get a fibroscan, get your stats and get onto the doc…take the power back from those who would prevent you from having control over your own health.
To that end, I got the magic parcel from the postie this morning – incredible to think how much $ those two seemingly innocuous bottles represent! I feel so fortunate and grateful to all concerned, especially to members here and Dr J for his tireless efforts to help us all beat this scourge. Can’t wait tor January and the trial start (and I thought I was impatient before)
Hey ZHUK – Great News you got your parcel – Why is January your ‘trial start’?
I tried printing off the GP Cheat Sheet – It cuts off the whole right side margin and made no sense. I tried to export it as a pdf file and the same deal even though that’s how i got a copy for my brother – so go figure?
I told her about this info sheet but it was very clear she didn’t want any part of it. I suspect the Specialist has put her off – as you say they want to maintain the power. She asked if I wanted to be referred to him privately to get things going but suspected it would be too costly.
I did tell her that the PBS thing is looking much later than Feb ’16 and she did admit that even when things like that do go through it doesn’t mean automatic access. So, when I finished my rant – I wasn’t in a good mood – I got the impression she understood why I wanted to do this and stop the endless waiting.I wanted to do this before I entered my last Specialist appointment at the RBWH in October – I’d been reading Greg Jefferys’ Blog. The Specialist said that was great but he knew of a better way of ‘importing’ and showed me his phone with the Fixhepc website – told me to go home research it and get back to him and he would send a letter advising my GP of this.
Turned out the whole ‘getting back to him’ has been the problem, weeks before my GP could finally speak to him BUT I’m not allowed to, no not the lowly patient. I have to wait until next year to see him publicly or pay privately!!The only place in Brisbane to get the Fibroscan is a Private Hospital clinic – you need a Specialist’s referral, especially for any medicare rebate. I paid $250 in early 2013 and don’t even remember if/what medicare rebated.
I’ve been deeply depressed this week, I’m exhausted from all the endless back and forth BS and having to justify and repeat myself every step of the way. I’ve had this for 34 years and dealt with so many DR’s /Specialists along the way. I’m so tired and want to crawl into a hole and give up. BUT, I have this beautiful little boy, 10 yrs old completely dependent on me and I want to be well, not just for me, but for him.
I homeschool him as he has ASD and my plan had been to start in January and get the tx underway, in case i get ill from side effects, before our ‘learning journey’ gets heavy.
Anyway, I will call the RBWH clinic to speak the Hep Nurse today (I put it off for a few days I just wasn’t up to it) and see how I go about getting the Fibroscan referral and the script. If I at least get the Fibroscan I could go the GP2U route with Dr James as Neilo and Flyingfox66 have discussed.
Fingers crossed i don’t hit another roadblock
Again, great news you’re ready to start – looking forward to following your progress Zhuk
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HHey Chejai,
Damn, what a runaround…I don’t blame you it must be exhausting and bloody frustrating, on top of everything else you have to cope with. It wouldn’t surprise me either if your GP has been “warned off”, esp if Brisbane specialists are the type of ‘old boys club’ which Greg Jeffreys has described
inch: Can you organise the blood tests to work out a Hepascore, as Dr J has suggested? Might be a viable replacement for the fibroscan, then you could go straight to GP2U and cut out all these refractory middlemen?
http://fixhepc.com/forum/experts-corner/362-fibroscans-vs-hepascores.html
See how your GP responds, it shouldn’t be too difficult just to get bloods for that (fingers crossed)
Thanks for all the well-wishes mate
Dr James has posted the Redemption trial timeslines as Jan > March, so I’m attempting to be patient until then heh.
Hi Zhuk, very exciting news that your meds have arrived – good luck with being a patient patient for another month. I couldn’t do it!
Thanks Joy! Ha I know…I’ve already gone and checked up on them a couple of times, just to kill the “Dreaming? No I’m not dreaming” feeling
lolSeeing one of the RPA nurses tomorrow, get the pre-tx bloods taken go over my other medications re contraindications etc. I have also been taking milk thistle for some years, so probably better to allow a bit of breathing space on that before treatment as well. All good
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