TOPIC:

Definitely not dreaming now, Joy

Hey call me thick if you like lol, but its only with the prospect of a cure that I've realised how much I've avoided considering a long-term future before...aws none of us could say for sure whether we would have one. This must have a pretty profound impact once you think about it, huh.

Yes, profound indeed, like dragging around a ball and chain.

Now we can reimagine our futures...

When the ball and chain is removed it will feel like zero gravity, because we will all have developed such powerful struggle skills.
I think of the virus as a tough master who has taught me how to look after myself the hard way. Now we are all about to be unleashed on the world. Rather amazing!

Chejai wrote: Snip......
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.

Hi Chejai,

Okay, based on what happened at that meeting you had above I think you have one of the supportive Brisbane specialists on your side. The problem I suspect is that a great deal of pressure is being applied on the public clinics and as a result the helpful people are wary about putting their heads above the barricades in case they get shot at.

You may have read here that my specialist agreed to write me a private script and then monitor me through a public clinic. What I haven't related till now is what has happened over the last couple of weeks. I didn't say anything until now because I was waiting to see what would happen before going public on here.

So, a couple of weeks ago my meds arrived and I tried to contact the nurse at the clinic via email and phone msgs to let her know I was ready to start treatment and monitoring. No response! Well, I thought about it overnight and the next morning decided "Stuff this, I'm starting treatment now! She's busy and will ring me when she has time." Nothing!!! So knowing that I had a CT scan at the hospital in two weeks I decided that if I hadn't heard anything by then I would go to the clinic at the same time and front them about whether I would be monitored or not. If not then I would contact GP2U and see about arranging at least minimal monitoring tests etc. in tandem with my GP who is now coming round to the idea of generics.

Anyway I heard nothing until the start of this week when the nurse returned my call. As we talked it became increasingly clear that she was reluctant to mention generics or offer anything to me.......BUT if I suggested something she would readily agree to it. Now, I have had regular specialist/clinic contact over the last 3.5 years including 6 months as part of a clinical trial plus have read extensively about the generics and monitoring required so I have a pretty good idea of what is required including Riba effects from last time, so we were able to negotiate my monitoring and clinic visits in a satisfactory manner so that I get what I want/need. It seems very obvious to me that pressure has been applied for clinic staff not to offer support to patients using generics.

As I understand it you are not in the position to become a private patient of the specialist who just happened to show you his phone that at the time just happened to be showing the URL for this site? In that situation I think I would probably make sure I had an appointment booked with the clinic to see him as soon as possible in the new year. Don't mention generics till you get in his consulting room and the door is shut.

Further to that (if I tread on any corns here pm me for an edit) in the mean time see if you are in the position to make an appt with GP2U to investigate your fibrosis status and where you go from there regarding treatment. If that works for you and you are confident to go ahead then you can turn up to see that specialist at next years appt and say "My current list of medications that I take includes this and that, oh! and Sof and Led and I need the public clinic to continue to monitor my hepatitis taking this into account".

Hope those thoughts help.

G

Hi Chejai,

I know it's disheartening, but stay strong, you're not alone, most of us have come up against those negative specialists & doctors, makes it so difficult, but you got to stay positive.

I think that blood test sounds good.
Why not do that.

Good luck with it all, it WILL all work out you know, give that lovely boy a cuddle & know that you'll soon get well & have a happy healthy life.

Love Cindi x

Hi zhuk,

Good luck tomorrow at the blood place.

Exciting, not long now before you slaughter that dragon
x

WOW GAJ !!

Well said!!

x

CJ wrote: Hi zhuk,

Good luck tomorrow at the blood place.

Exciting, not long now before you slaughter that dragon
x

Cheers for the well wishes, Cindi

Have started to count off the days already lol

I've decided to go the Hepascore route, and when I asked how the test would work, I was told that Dr Freeman could order the bloods at our appointment and then write the script once he had seen the results. I hope that will all work out as planned as I won't be able to get a Fibroscan for months (minimum) and I'm just not willing to wait.
Having said that I'm quite healthy so its not a big deal for me not to be monitored. I'm sure my GP will do bloods for me at least.
Main thing is to get prescription advice from someone who has the most experience in the field, and in this case it isn't the specialists anyway.

Hear you on that, Chejai!

Also interesting how your GP got cold feet because of the "risk" of an unfamiliar product - today I saw the nurse & specialist at RPA for my pre-treatment check/bloods, and found out that because the meds have been TGA-approved, they are in the MIMS book already (just not on the PBS). This was in relation to the thyroid op which has to be done in the new year, and I will be on tx by then...so the hospital can look up the book to check for contraindications with antibiotics etc. I'm pretty sure they would be "unfamiliar" too but no one is freaking out about the prospect in the least.

Thanks zhuk,

For anyone not aware, MIMS is basically the bible of the medical profession for what drugs are available for prescribing for what purposes.

Chejai,

Well, it isn't illegal and we are about three months down the track with no one stopping it! Depending on when he told you there may have still been some doubts in his mind at that time. Yes, sounds like he's arse covering to some extent. To be expected. He is also ensuring you were aware of all the options available to you and their implications.......as a good doctor should. I wasn't present for the phone call so what he said and what your GP read into it are unknowns.

Flyingfox66 appears to have investigated some options. Maybe pm her to discuss including rough costs if either of you don't feel comfortable doing on here?

G

Many thanks GAJ, I should have provided the explanation, my bad


en.wikipedia.org/wiki/Monthly_Index_of_Medical_Specialities

Please feel free to message me Chejai. Maybe we can compare notes. I'm still on a learning curve myself but I am determined to get things moving now asap.

Ok, thanks everyone for the advice. Monday I try to track down, again, the Clinic nurse I was referred to - see what she says about how I get things started. I will ask re Fibroscan and Hepascore. I should contact the private hospital that does the fibroscans (only one available) check on waitlist because maybe Hepascore might be quicker. Once I know where I stand re their helping me or not I may go the GP2U route.
I feel sure the Specialist was just doing his job in making sure he covers all options so that he knows I'm making an informed and responsible commitment re tx, although he appears to have 'spooked' my GP from monitoring me.

BTW, how do you PM someone?

Whoops, Don't worry just saw the 'Private Messages' option at the top! Don't mind me still navigating the site. I only just saw the 'Redemption Trials Posts' - now I know why ZHUK is waiting to start in January