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'In which LG seeks Redemption & makes new friends' 8 years 2 months ago #9237

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Honker - Forget the 'jittery' and go for the 'excited' - Medicines & holiday?
The best combination :)

DT & Chejai, Great posts and I will be back later to reply :+1:
#love to you Chejai, shocking reading.
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
The following user(s) said Thank You: Chejai

'In which LG seeks Redemption & makes new friends' 8 years 2 months ago #9252

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DT said

I just want to make the point that state medical care is perhaps not offering the correct incentives to encourage service with a smile.


Yep ,I guess that just about sums it up. Here in the UK especially with NHS staff moral at it lowest and the first junior Dr strike since 1970 something. The current Gvt seemingly at war with them and a general feeling of being unappreciated and bullied.

Just because you pay though, a smile doesn't necessarily equal quality care. Some private companies would to keep you as their customer after all ;)

I think that some medical departments are thought of as more 'glamorous' places, or exciting places to work than others.

I have noticed this too.

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.


A recent consultant said to me "Anyway, you wont be seeing consultants any more once the new guidelines come in, the nurses will do everything" .... This consultant was all about 'him' - The nurse told me he was new, but 'didn't know how long he'd stay" He openly displayed a distaste of having to be there.He was the one who haughtily declared " We are only interested in the liver " - Hmm looked him up, he has one joint paper written online - Hardly enough of a reputation to warrant such a high brow manner.

Previous consultant, a lovely kind man, a leading word authority and hundreds of articles &medical to his name. He wanted to stay on part-time as semi retired, but they refused and replaced him with Mr Haughty . My GP rasied his eyes when I told him the story, I think there's much of this going on and as usual, it's in the HepatitisC area of care. At my fist hospital, the HepC nursesdidn't even have their own workspace ! They were 'squatting' in the renal department - they were overworked and stressed (I was told).

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.

Yes, as the common phrase goes concerning the NHS - "He who shouts the loudest, gets heard" - The problem is, the sicker or more fragile we feel, the less we can deal with shouting and therefore many won't get heard at all.
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
The following user(s) said Thank You: Chejai, Ariel

'In which LG seeks Redemption & makes new friends' 8 years 2 months ago #9253

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Chejai said

He wanted to know what was my spiritual and moral standpoint

:ohmy: :ohmy: So totally shocked re this - Outrageous and if you had recorded him ,I 'm sure he would have been in trouble. Sounds like he though "female, upset....can be bullied" - Phew, look him up Chejai, can you remember his name? I wonder where he is now? (If he's still practising) At least you could advise others (especially females) not to go to him by whatever means.

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

I hear you there...I am the same. Now, I just keep very quiet when a specialist says something. I try to give my self some time to process and if necessary, I scribble it down in my large blue note book and ask them if it would be possible to think about his/her advise and get back to them re that.

As my lovely GP said ages ago - " You need to have faith in those who are treating you" - This has become more and more apparent as time has gone on.
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
The following user(s) said Thank You: Chejai, Ariel

'In which LG seeks Redemption & makes new friends' 8 years 2 months ago #9254

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On a positive note, Day 17, feeling fine, except for some mild dizziness and evening fatigue/brain-fog . Bright as a button in the mornings :-)
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
The following user(s) said Thank You: Ariel

'In which LG seeks Redemption & makes new friends' 8 years 2 months ago #9256

LondonGirl wrote: Yes, as the common phrase goes concerning the NHS - "He who shouts the loudest, gets heard" - The problem is, the sicker or more fragile we feel, the less we can deal with shouting and therefore many won't get heard at all.


Yes, and this is what concerns me the most. It is the 21st century and we are just getting around to exposing child sexual abuse and talking about it. This is largely happening because those children grew up and found their voices and spoke out. We still have not gotten round to exposing abuse of the elderly and other vulnerable sections of society, and that could largely be because they either die or they can't speak up and never will be able to. The people who perpetrate this kind of abuse have a talent for finding people who are not in a position to report them and be heard.

Some may think that my calling it abuse is overreacting. They may have less of a problem to name what LG has experienced as 'bullying'. However, I think that a bit of bullying is the thin end of the wedge. Bullies test the water. Some will continue to go as far as they think they can get away with. In LG's case - thankfully not very far. :angry: The only successful exposure so far has been from a few whistleblowers who secretly filmed abusive behaviour from medical staff. This is why I would advocate for nipping the bullying behaviour in the bud, before it progresses to serious injury and even deaths. The people who can't speak for themselves need somebody to do it for them. LG, keep your notebook at the ready.

dt
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'In which LG seeks Redemption & makes new friends' 8 years 2 months ago #9281

It's awful to hear all these rotten experiences :/
I am a childhood escapee from Britain who sometimes feels homesick, but the thought of going back and growing old there is not very appealing. In fact from the outside it seems like Britain has sunk deep into an Orwellian/Dickensian nightmare in many respects. Australia is slowly heading towards being a climate change disaster and a third world country but we still have mostly nice health people I think, if often incompetant. Poor Chejai you were really unlucky with this nutty guy. It's so hard in those situations to hold your own. And so frustrating when you are too upset to let them know what you think of them. I am formulating a plan B that sidesteps specialists altogether.

My friend has a specialist this week (one who was about to put her on Interferon, and hopefully will have had a change of heart in the light of the PBS listing.) She is planning to record the whole conversation on her phone. Seems like a good plan...
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Harvoni 12 wks
Brisbane, Australia
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'In which LG seeks Redemption & makes new friends' 8 years 2 months ago #9286

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In fact from the outside it seems like Britain has sunk deep into an Orwellian/Dickensian nightmare in many respects.

Yes flying fox, in many social aspects it has. so many more homeless on the streets, property prices out of control and many using foodbanks. also, the government has just stopped grants for poorer students in education, along with attacking sickness benefit etc etc And the worst thing, they're selling off our NHS :(

There's still some good things though, London eg
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

'In which LG seeks Redemption & makes new friends' 8 years 2 months ago #9291

If you can afford to live in London.
They are saying there will be a crisis soon in all the service industries there because the low waged are all being forced out of the city. This probably includes grumpy nurses.

You have a truly appalling and frankly genocidal government there's no doubt of that, and very little hope of getting rid of them. In that respect we are quite similar sadly. Life is a little easier here still though, which is probably why people are still fairly cheerful in comparison. Our public health is not too bad, at least in the cities, although you can wait many years for operations etc. There is definitely a push on to get rid of it altogether though. It's only a matter of time.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia

'In which LG seeks Redemption & makes new friends' 8 years 2 months ago #9295

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This is true FF - Sadly, but housing is a huge issue just about everywhere now.

You have a truly appalling and frankly genocidal government there's no doubt of that,


Yep, it's crazy - scary stuff - don't get me started !
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

'In which LG seeks Redemption & makes new friends' 8 years 2 months ago #9303

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LondonGirl wrote: Chejai said

He wanted to know what was my spiritual and moral standpoint

:ohmy: :ohmy: So totally shocked re this - Outrageous and if you had recorded him ,I 'm sure he would have been in trouble. Sounds like he though "female, upset....can be bullied" - Phew, look him up Chejai, can you remember his name? I wonder where he is now? (If he's still practising) At least you could advise others (especially females) not to go to him by whatever means.

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

I hear you there...I am the same. Now, I just keep very quiet when a specialist says something. I try to give my self some time to process and if necessary, I scribble it down in my large blue note book and ask them if it would be possible to think about his/her advise and get back to them re that.

As my lovely GP said ages ago - " You need to have faith in those who are treating you" - This has become more and more apparent as time has gone on.


HI girls, I am replying to you both and all these posts , I am same day as Chejai; at our Day 14 anniversary :)

Okay, re the way you were treated Chejai,, that is absolutely disgusting; the whole demeaning, down the nose rot about alcohol, about your spiritual wellbeing etc...can this person actually see inside your brain and heart and are they on your shoulder pitty patting around noosing into every corner of your life rating you on a 1-10 scale of their judgement!
LG when you get on the plane to come help me quietly and sweetly tar and feather my loud receptionist there's a room here for you hunny.
I have one last anecdote to add to the stigma list..(gosh it is good to be able to get this out) .
I am sitting in my initial interview to be eligible for the 'trialthattnevercame' and without even looking at my face the question "are you still using?" me: Yes, I am using panadiene and BP meds. PHFTTT!!! I am sitting there in my Zara pants my fancy sweater etc how rude!
I do not judge a book by it's cover, and am tired of having to present in this fancy groomed manner anyway, but I also do not care if people are users, are in trouble mental health wise, are drinkers, or anything all these are symptoms of something else anyway!...how rude though, what is wrong with realising I am a nice lady albeit an anxious one, in a rotten bind, seeking help and why not, when asking questions from that list they have at least it could be a softer delivery eg an intro along the lines of...'now the next question may be a tad confronting but we have to ask...." or similar!..Anyway next question from screening person (no names or hospitals mentioned but yes famous on our blog LG and buddy with said receptionist she of the 1000 decibels): "When did you stop using" and me: 'I am still using those meds thankyou'.

I just fight fire with water. It always works for me.

Now I think I will invest in the BLUE BOOK. What a brilliant foil for this rot we are all anecdoting here.

Clearly we are only about our health, our life, our regaining what we have had to lose to this bugger. Maybe I will draw a big evil face on the front of it too!
Seriously who the hell cares how anyone got HepC or B or anything for that matter...dementia, anything!

It reminds me of the many times I have had to go in for scans and so on to check my nodes and a few lumps and bumps that this pooey thing has caused with my immune system trashed...why are these places painted pink in general? Do we need to be reminded of why we are sitting there? Why are there yellow daffodils made of crepe and tissue paper stuck like a garden on the wall in the MRI place. Is this to assist us with our anxiety levels? NO

I am grumpy today, and I am not on my own blog, we had yet another drowning here at the surf yesterday and the only damned surf safety sign anywhere is one that I made and donated to the community after the last death and I am tired and sick of lobbying for just about everything. I was at the beach yesterday and right in the middle of it when it occurred. I am grumpy.

I also want to say on our case here re HCV that there does need to be a step up on what is happening in the States, that it is a disaster.

I am going to try to finish on a bright note...End of week two and still following you like a domino that wont fall down here LG.

One awesome thing from my Sunday..I dropped into a garage sale yesterday and met an amazing couple of Brits. The wife worked at the Speakeasy Club in the heyday 1966-late 70's in London!!! Oh the marvellous anecdotes she shared with me oh the wondrous tales off who she partied with, Hendrix, Bowie and all.... I had my David Bowie T shirt on yesterday. I purchased a lovely cane screen that they had brought over from their London home which she had used to do 'psychic readings' behind! How cool is that I am in love with it just for it's history. I paid the princely sum of $30AUS for this cane screen holder of secret shenanigans!

Now I have completely hijacked your thread I will bid you adieu and swim on over to my page to anecdote last night because I want to share about a few things medically speaking.

Lots of love from here in Oz
Ariel #love #duck #love #duck #love #duck
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
The following user(s) said Thank You: Chejai

'In which LG seeks Redemption & makes new friends' 8 years 2 months ago #9335

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Good morning all :)

Just got my Liver & Kidney function test results from GP ...
All within Normal range (!)
ALT (to signify drum roll) ................................................................................................................................................................................................................................................................
.......................................................................................................................................................................................................................................................................................................
........................................................................................................................................................................................................................................................................................................
.......................................................................................................................................................................................................................................................................................................
................................................................................................................................................................................23 !!!

:cheer: :cheer: :+1: :+1: :+1: #woohoo! :P



Impatiently waiting on VL but ... Someone tell The Verve, The Drugs do work ! ;)
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
The following user(s) said Thank You: coral, Chejai, Ariel, Gaj, flyingfox66, honker, magpie

'In which LG seeks Redemption & makes new friends' 8 years 2 months ago #9339

I am so happy to hear your news LG! What a feeling you must have now.
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
The following user(s) said Thank You: LondonGirl

'In which LG seeks Redemption & makes new friends' 8 years 2 months ago #9340

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:silly: :cheer:

#love #flower #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
The following user(s) said Thank You: honker

'In which LG seeks Redemption & makes new friends' 8 years 2 months ago #9341

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Best news babe stoked for you
This is at two weeks yeah?!?! Wow wow wow wow
#love :+1: #love :+1:
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
The following user(s) said Thank You: LondonGirl, honker

'In which LG seeks Redemption & makes new friends' 8 years 2 months ago #9342

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:cheer: Two weeks, heh? Wonderful result LG! :+1: :+1: :+1:
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
The following user(s) said Thank You: LondonGirl, honker
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