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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9123

That's just awful LG. I guess I have been lucky in my journey, my GP is very supportive, medical staff are fabulous and certainly not judgmental. Bendigo Base still haven't given me an appointment however I have spoken to the Nurse at the Liver Clinic and told her about my generics etc. To say she was excited is an understatement,......everyone I have told about my HepC including workmates have been incredibly supportive....as I said I think I have been very very lucky and it makes me really sad and mad to hear about the way those of you that have been treated badly.

Keep on keeping on! :)
Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9127

Evening to you LG #flower

Glad you weren't turned into a pin cushion for your bloods - sadly I'm not the least bit surprised of how many here have experienced some form of judgemental behaviour by the very profession deemed to care for people with HCV. I have been a silent witness to this, and its the reason I have done a story about it in a magazine here in NZ.

Good on you for standing your ground and I'm looking forward to seeing your results. Nice to hear you are putting on some insulation :P go that bread and butter pudding. :+1:
SVR 24
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Last edit: by Tina-Hill-facebook. Reason: you guessed it - spelling

'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9128

Ariel wrote:

Chejai wrote: Honestly LG, that's disgusting but sadly, too familiar for me here in Oz. I'm glad you held your ground and got through it but this endless judgement, prejudice and obnoxious behaviour we have to endure is outrageous. We are meant to be in the PC era (Politically Correct) and get constantly bawled out for using inappropriate terms for bloody everything - yet, something like HepC we're still treated like pariahs by so many.
The Liver Clinic I attend in the Public Hospital has posters everywhere about staff not accepting verbal abuse, threats, intimidation etc (fair enough) yet I've still had to endure some Specialists 'attack' me and the general Hepc patient population for our appalling 'lifestyles' and treatment of our bodies!
Aaaah, yes, it's time to bring out the

#rant

I feel better already :lol:


Yes Chejai! So LG we too are treated appalling
I'm in the music industry as you know and also spent a lot of years at the coal face in classrooms
Also a coastal rural area
So I got dumped 'on the bench' in Trials Clinic waiting for the trial that never came. I will never forget the first day I went down that rabbit warren to the clinic located in one of our major public hospitals
The receptionist looked at me and omg I must have turned grey under my usual happy demeanour as she LOUDLY announced so the whole universe could hear " I saw your name on the list for today WHY ARE YOU HERE!!!" Noice, yup I taught her kids eons ago and she lives locally. Cut to a few weeks ago and I received my sms reminder to attend at the clinic
Of course by then I was already up and running thanks to James and Greg here, so I rang up to ask if seeing I had commenced tx on generics were they happy to monitor me, a reaonable inquiry
The same receptionist upon listening to me responded "you WHAT!!! Oh No No NOOOO!
It spiralled from there into a very strange case of being told "how do you even know what to take blah blah ...
Now I have managed in work, produced shows and dealt with many people so I know how to play the passive firm quiet game and held that attitude as I listened to this RECEPTIONIST rant away.
I haven't 'sacked' them, and I didn't get my script from them which is maybe a power issue, but the shenanigans at the clinic certainly aren't professional; talk about over familiar!!
Re blood collection
What a disgusting experience LG I have read it twice just to get my head around it. It's so true what Chejai says we are faced off with all these signs posted about conduct etc but hello please will you behave too when you're poking around in our arms. It's rank the treatment you got. My best friend is a path nurse. She would freak out at your experience LG
OKAY so to focus on something good
First bloods done you lucky #duck
Waiting to hear how you go
Keep the posts coming LG I am three days behind you in tx and check in regularly xxxx
Thanks and yes my #rant to add to the bunch ;)


Hi Ariel this has happened to me TWICE! where I have been told about a trial and dumped due to unforeseen circumstance on behalf of the Pharma company - I was devastated.
SVR 24
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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9142

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Ooooh like it! That giant blue notebook LG! Sounds ominous! :evil:
If that receptionist only knew


Ha ha Debs, I was advised when first diagnosed, to take a large notebook to my first consultant appointment & jot down what they said as there is a 'steep learning curve' - So bought a large one with enough space to keep blood results etc all in one place.

In the event, it wasn't needed, as after 3 months of waiting for my appointment and getting to the hospital with agonising joint pain after their txt reminders not to miss my appointment ,up stairs and down long corridors etc, waiting ages anxiousy in the most overcrowded miserable waiting room, the 'consultant' didn't show up, just leaving a note with reception saying he 'didn't want to see me'.

A taste of things to come eh?

LG xx
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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Last edit: by LondonGirl.

'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9143

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but this endless judgement, prejudice and obnoxious behaviour we have to endure is outrageous.


Chejai, I am s sorry you have had to experience this too #love - and it does nothing for our health. When you eventually see someone and they tell you to try to reduce stress - laughable if not so debilitating.

Well, I guess we have taken their advise and reduced stress as recommended by avoiding these people as much as possible !
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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Last edit: by LondonGirl.

'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9147

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Ariel - How dreadful, "what are you doing here " - It's almost enough for me to want to hop on a plane to that clinic say "Ahhhh It's YOU ! - you're the receptionist who embarrassed my friend in public when she was sick - Hey, you're famous on the internet ! "

Medical receptionists need to be better trained. End of. I read up on this a bit last night and in the UK at least, patient confidentiality is supposed to be adhered to by receptionists (!) I need to read more, but apparently, you can ask to speak to them privately if you wish. I feel this is an important issue as this kind of thing could actually prevent people from seeking help at times - Yep, serious consequences for you to think about receptionists.

I guess I have experienced this so much, that now , at least it doesn't upset me so deeply, It's also noted down in my big blue book ;-) - it is a matter of principal for me and hopefully some medical people may read and take note to talk to their receptionists. I do think it important that we report such behaviour - I shall wait until EOT then will do so.

On a positive note, yep first bloods done, I asked for just basics, LFTs , CR &E & VL - at week 4, I'll ask for the whole kaboodle. I made a point of thanking the phlebotomist who said bloods should be done right away & back for Monday (NHS admin obliging) and also wrote a rave review about my GP online, so it's not all bad ;-) You and Debs are right behind me #love
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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Last edit: by LondonGirl.

'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9148

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Lynne said

That's just awful LG. I guess I have been lucky in my journey, my GP is very supportive, medical staff are fabulous and certainly not judgmental.


Hi Lynne, thanks, my GP surgery are actually lovely, but their (nice) nurses aren't the greatest at taking bloods (for whatever reason) - It was the local hospital receptionist in the Phlebotomy department who did this (she really should know better).

I shall keep on keeping on - and now with some renewed energy thanks all the good people on this site & connected. #flower
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9149

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I agree DT, unfortunately - I have witnessed this at first hand in A & E especially, where I ended up helping the elderly in there who were left moaning and calling out for help. It upset me so much I considered helping out as a volunteer, this was before I became unwell myself, but I may do so when better.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9150

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I have been a silent witness to this, and its the reason I have done a story about it in a magazine here in NZ.

That's awesome Tina, do you have a link? would to to read it #flower

go that bread and butter pudding

Ha ha - I had one last night ;) #love
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9151

Hi Chejai

"The Liver Clinic I attend in the Public Hospital has posters everywhere about staff not accepting verbal abuse, threats, intimidation etc (fair enough) yet I've still had to endure some Specialists 'attack' me and the general Hepc patient population for our appalling 'lifestyles' and treatment of our bodies!"

I work in allied health in the public system and attend my specialists appointments on workdays (in my lunch break!!!!) in my hospital uniform and quietly sit with everyone else waiting to see the same specialist.

Never witnessed such behaviour or experienced it here. Even though where I work is obvious, I am too old not to be able to tell what people REALLY think.

Obviously people here, me and I expect the people who treat me where I work, would think your being made to feel bad for going to hospital for treatment stinks. Maybe the people involved need to rethink and carefully examine their own practice.


Yours


J.
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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Last edit: by sabrecat.

'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9158

I am wondering if there is something particularly toxic about medical care funded by the government and thus a monopoly. I recall a visit to Cuba where I stayed in a few different hotels, some government run and some privately owned. The difference was like night and day with regards to the service I got. The state employees all looked at me as if I were an inconvenience that they wished would just disappear off the face of the earth. Well, their jobs were guaranteed. They had no incentive to actually do what they were there to do, and a lot of foot dragging took place before they could be bothered. I saw the same thing in other government run places, supermarkets, etc. By contrast, the privately owned places could not have been more helpful. Service with a smile. They wanted customers. They wanted to have jobs to go to. Now, I do not want this to turn into a political issue, I just want to make the point that state medical care is perhaps not offering the correct incentives to encourage service with a smile.

There's something else too that I want to mention. I think that some medical departments are thought of as more 'glamorous' places, or exciting places to work than others. Strangely enough, virology is at the moment an exciting area with many scientific breakthroughs taking place so you would expect it to draw the brightest and the best. While this is in fact happening (eg. the doc), there is a lot of dead wood to get through sitting in high places. The arrival of the DAAs have taken this lot by surprise, just when they had become top authorities in their field. With the DAAs so recently approved, many do not have a lot of experience with them, and so they find themselves in the uncomfortable position of being the supposed expert but they don't know the answers. I was struck by a recent post by the doc which said something like he had treated more people with hepC using the DAAs than all the other liver docs in Oz put together. So while these other guys have put the years in, and their experience is certainly valuable, there's this new generation on their heels, just arriving, who know so much more about the use of the DAAs. I have seen this in other fields like technology and it makes for a lot of in-department tension and also a lot of early retirements.

And lastly, another word about what some view as the more 'unglamorous' areas in medicine to work, the care of the elderly being one, particularly if dementia is involved. Here you will find the disenfranchised and you will also find those who prey on the vulnerable, the weak and the powerless, especially those who have no family to speak for them. When you get that snotty receptionist or that arrogant consultant you can walk away. But imagine how much worse they could inflict on you if you couldn't walk away. There is a serious problem with this kind of person in the medical services and it needs to be blown wide open. Thus, what you are doing is important LG, and it has much wider ramifications for all the people currently under the thumb of some sadistic m.f. while society turns a blind eye, as if we won't all get old some day.

dt
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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9163

LondonGirl wrote:

I have been a silent witness to this, and its the reason I have done a story about it in a magazine here in NZ.

That's awesome Tina, do you have a link? would to to read it #flower

go that bread and butter pudding

Ha ha - I had one last night ;) #love[/quote

Its not published yet as its in a quarterly magazine for The NZ Hepatitis Foundation - when its out I will post it up :)

SVR 24

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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9166

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:+1: I look forward to that Tina
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9197

You go girl! Really good news LG. Now one week until I leave for Tasmania. Excited and a little jittery.
Diagnosed in 2000, Genotype 1(b), no previous treatment,
Viral Load 90,700, ALT 86, AST 56 (as of Novemeber 15, 2015)
Fibroscan F0
Starting Redemption Sof/Led on February 2, 2016
Thanks to Greg Jeffries, Monkmed , FixHepC and Dr. Freeman

Feb. 29
Week 5 of tx
ALT 23
Undetected

May 26
4 EOT
ALT 25
AST 28

Didn't test for viral load. Will test is July at 12 weeks EOT

August 1
Liver enzymes in normal range
HCV UNDETECTED
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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9214

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sabrecat wrote: Hi Chejai

Obviously people here, me and I expect the people who treat me where I work, would think your being made to feel bad for going to hospital for treatment stinks. Maybe the people involved need to rethink and carefully examine their own practice.


I can imagine what you witness working in the field Sabrecat and probably many people who just shouldn't be working with the sick and vulnerable as DT so poignantly expressed.
One particular Specialist, I saw 3 times, would ask how I was doing and had I consumed any alcohol since my last visit. I'm always honest, a bit too so probably, and I always told him what I had. I know they 'assume' you're lying and therefore 'change' the figure to their own guesstimation - I actually saw this on the paperwork and demanded to know why he was putting different answers to what I was saying. He would then launch into a rant about the damage I was doing and didn't I want to be alive to raise my son etc., etc.I would end up crying my eyes out as he'd go on about how 'disgusted he was working in this clinic and seeing how appallingly people treated their bodies. We were all representative of Western societies' excesses ...'
By the 3rd appointment this rant was really fired up and he said that he couldn't take anymore of the patients he had to deal with in the clinic and was transferring to another area in Gastro. He wanted to know, as I'm sitting and bawling my eyes out, if I was serious about my health and wellbeing. He wanted to know what was my spiritual and moral standpoint, did I want his help because he could refer me to a psychologist who 'specialised' in such spiritual dilemmas - i didn't think I was experiencing any spiritual dilemma but what did I know???
I hadn't started seeing a Psych at that point, so I asked for more info. He started to write down some details and when he told me the location - a special clinic at his 'church' near the city, I told him I couldn't travel that far. He launched into another spiel about me not being serious about my future etc. Then he looked up my address and realised I was on an island and all the BS involved in getting to the city. He said something else, trying to comfort me and stop me from crying and then suddenly became really cold and withdrew saying, 'no, I've said too much. That's all you have to go now, goodbye and Good Luck!'

It was extremely bizarre, inappropriate and traumatising because as much as I wanted to report him I was reminded of the last time I made a complaint in another hospital and what was 'done to me' to stop me from making it formal.

On the bus journey home as I started to process all that had been said in that session, and previous, and I realised his obvious religious persuasion and his attempt to 'recruit' me and the 'special psychologist's' role would have been to 'brainwash' me.

Whilst I am a strong woman and have endured a lot in my life, particularly abuse in all forms, and like many when I'm stressed, upset and vulnerable I can't seem to protect myself at the time. I take awhile to process things, I need to go to my cave with no other incoming stimuli and take it all in. He could see he was about to 'hook' me but even if I had of agreed, once I had time to process I would have seen clearly what was happening and bailed.
Yes, DT as you were saying dangerous people working with the vulnerable is a reality and often goes on indefinitely because the victims can't advocate for themselves.
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec '15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb'16 VL UND #woohoo!
AST 24
ALT 26
GGT 50H
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