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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #8962

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Hey Honker, :)

Unfortunately, on my last blood test, I followed DTs advise and drank plenty of water, I also requested a butterfly needle, she refused and came at me with the biggest needle I'd ever seen, she got me 1st time, but after my initial delight, the lump started appearing immediately :(

I am old enough to know I need a butterfly needle and have learned from experience. will refuse test next time if they don't agree.

Thanks for your good wishes #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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Last edit: by LondonGirl.

'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #8968

Hi LG,

Glad to hear that your bloods are going somewhat better, but with room for improvement. I always ask for a blue butterfly needle because it is smaller than the green one and allows your blood to flow more slowly.

In case you get another refusal to use a butterfly you could consider taking along some of your own. But be sure to get them from a totally reputable source !! I have heard rumours about these kinds of things being cleaned and repackaged in some countries for sale a 2nd time around. Aargh!

dt
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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #8971

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Argggg Indeed DT!
Will ask for a blue butterfly I think ;-)

Have requested bloods at hospital instead of GP surgery, they do it all day there, even if further away and a longer wait.
Last time really messed my arm up for a few weeks over Christmas, don't fancy that again !
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. Reason: typos as usual

'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #8974

Hi again LG,

I'm back on because I thought about my previous advice to take your own butterflys and I think this would be refused on the grounds that the source could not be guaranteed. So, I take that advice back.

I have never been refused by the NHS if I requested a butterfly. I have never heard of such a thing. You should definitely not go to the same place again. A hospital would seem like a good idea. It would do no harm when you organise your appointment at the hospital to inform them that you will be requesting a blue butterfly and ask them if that is going to work for them, otherwise you are not interested. It would be a pity to turn up and get another refusal, not to mention demoralising.

dt

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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #8975

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Don't worry DT, they weren't on my shopping list ;)

Seriously though, the one the last nurse used was GIGANTIC - don't think I've ever seen such a big one
Thinking she saw 'Patient has HepC ' warning and decided to distance herself as much as possible, think it was just too big for my little vein :(
The previous nurse was very nervous there too, Yep, I 'm better off at the hospital, I hope !

Thanks for your concern, it's appreciated.
LG
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 #9022

These days, I refuse anything that I suspect will not work and ask for an experienced technician, one that does not appear to be nervous. Lots of stabs and lumps later for me to learn that it is better to stand my ground..... in a nice way ha ha

Good luck.
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 #9067

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Good news - I was in and out of there in less than 2 or 3 mins. #woohoo!

I was greeted by an extremely miserable & rude receptionist who told me I can't come to the hospital for bloods as they don't do GP blood referrals any more. I politely but firmly stood my ground. She shoved my request sheet back at me with a scowl. When the previous patient came out, I asked her if I was next, she rudely told me that she'd given me a blue piece of paper with a number on it - I search bag, chair (about 2 feet away from her, so I hadn't gone far) , pockets etc - nothing while she smirked at me and eventually said 'Well you're next anyway, so go in and by the way, we'll charge your GP surgery for this' - On arrival, she had a good read of the tests needed - LFTs CR&E & HepatitisC VL - She looked at me like I was a slug just crawled out of the ground.

Anyway, I went in and medic was just getting a large needle out, so I announced "I am a tricky one and I would like a butterfly needle" - He said no problem, it took him no time at all, 30 seconds or so, maybe even less. I had a good laugh and a joke with him and was possible a tad over the top with grattitude (hardly surprising with what I've had to suffer for the last 3 blood draws!) He also said that GPs can refer patients there for tests if they are 'difficult' - Job done.

Results should be back in time for me to take to consultant next week, hopefully. Pleased :cheer:

I am posting this in such detail case any health authority people in the UK read it and know what we have to go through sometimes. The things I have been through over my time since diagnosis lead me to believe that stigma against HepC patients comes in many guises. When I am better, I will be writing it up and presenting it somewhere - It's just not acceptable to be treated rudely - I mean, why?
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 #9075

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Hi LG, sorry to hear that you had to put up with that sort of prejudice at reception. :-1: :-1: :-1:

But glad the actual draw went so well and fingers crossed for great results for you. :)
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:
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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9077

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Go girl LG! :) :+1: #duck

Glad the actual procedure was fine!

I'm always surprised by the culture of rudeness that seems to exist in particular places. For example I always go to a further away friendly post office where nothing is a bother rather than the one nearby where they are all miserable and rude. Why? They can't all be horrible people in one place and the lovely ones in another. Maybe it's something to do with the management or rather lack of I guess. So hopefully some health authority people WILL read about your experience LG.

But job done and hoping for a great result for you
#love Deb xxx
Geno 1a, F1, tx naive, had it 35 yrs.
Started Cipla HepcvirL on 12/01/16
Starting VL 490,000
At 16 days in <15
4 week results: UND
8 week results: UND
5 weeks EOT alt 25
SVR 15 - Not Detected
6 months EOT - Not Detected
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Last edit: by Debs. Reason: Extra added

'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9083

Hoorah, job done at last! But only after you had to go through a ton of unnecessary sh** to get to the right person who would get it done.

I'm not sure that it is about stigma, or let's say I think it is about more than that. I think it is about power and the misuse of power. You get all the little Hitlers who feel the need to make it clear to you that you are in their jurisdiction now and you had better tow the line. And if you don't bow down and scrape and grovel and do what you are told, well then heaven help you.

I can't see this deplorable state of affairs changing any time soon either. The only answer is to find other more palatable alternatives to go to when help is required. This is easier if you can pay for it than if you can't, but some resources are still free, like the fixhepC website, and information on the internet.

I just ordered and received my first blood tests done privately. No doc necessary to do it for me for a big fat fee. Didn't cost that much. Results came in one day on their website, all the information there in front of me with the interpretation and a doc's consultation included if I wanted to request it. I'd have paid the money just to feel how good it felt, how empowering, to order my own blood results without having to jump through a dozen hoops and explain why I wanted them to some a'hole who was invested in keeping that information from me. Information is power. It always has been. The power mongers are losing their little fiefdoms to the age of the internet and the spread of knowledge that was once their exclusive domain. We need them less and less and they hate it. None of what we are all engaged in here now would have been possible even 20 years ago.

I admire your tenacity LG. If you want to take it on I'd love to read what you write about your experiences.
dt
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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9085

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Thank-you DT - A great ranty post - #love it!

What I am wondering is, my GP gave me the lab test sheets to give to the phlebotomist (?)
It had the details on the front page of GP, surgery request and the rest over 3 pages, was precise instructions for each test ie which bottle, lid colour, quantity etc The forms go directly to the lab sealed from the phlebotomist who has to sign it.
So... why did the receptionist feel the need to go through every sheet reading which tests I was having when the GP Surgery request was on the front page? She is a receptionist and a very nosey one at that !

I have wondered a few times what receptionists are allowed to know about our medical records and procedures and patient confidentiality. I can imagine if you lived in a small village, everyone would know your business
Just glad that receptionist isn't working at my GP surgery!

Agree re little Hitler syndrome, those types can be found in many walks of life, unfortunately.

I will get round to writing up my experiences, so appalling the HepC Trust said "you couldn't make it up" ! . I should say though, I have only ever experienced this kind of thing regarding HepC - Every other area of NHS that I have needed consultation with, have been excellent and pleasant too (Ophthalmologists / Breast Cancer screening). I won't go on, (remembering the 'physiotherapist' who told me I needed to 'see a physiotherapist' after accessing my medical notes). but that's another story !

Meanwhile, It's all in my giant blue note book.

But job done and hoping for a great result for you

Thanks Debs #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 #9086

"I have only ever experienced this kind of thing regarding HepC - Every other area of NHS that I have needed consultation with, have been excellent and pleasant too "

It has been my misfortune to have seen it in other areas too, most of all in the care of the elderly. My mother needed various kinds of care in her last years and it seemed to me that I spend all of my waking moments keeping her safe from harm from the very people who were charged with her welfare. From doctors, to district nurses, to home carers, to hospitals, I dare not even start to describe here what I have seen done to old defenseless people who had no family to stand up for them. My fury about it is just too much. So when I hear you describe these things I recognise them and I know where they can go when unrestrained.

I don't trust myself to say any more about it except that I think that after a certain age, going to the doc in UK could be a dangerous occupation. Going into hospital is definitely not advised. If and when I get clear of hepC, I intend to steer well clear and use all the alternatives at my disposal.

dt
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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9093

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Ooooh like it! That giant blue notebook LG! Sounds ominous! :evil:
If that receptionist only knew......... ;)
#love Deb xxx
Geno 1a, F1, tx naive, had it 35 yrs.
Started Cipla HepcvirL on 12/01/16
Starting VL 490,000
At 16 days in <15
4 week results: UND
8 week results: UND
5 weeks EOT alt 25
SVR 15 - Not Detected
6 months EOT - Not Detected

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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9112

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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:
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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'In which LG seeks Redemption & makes new friends' 6 years 10 months ago #9120

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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 ;)
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
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