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'In which LG seeks Redemption & makes new friends' 7 years 2 days ago #9640

  • LondonGirl
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Thanks Chejai #flower
Onwards I go.

Saw my new consultant today - Just brill - I made the right decision to change.
Interestingly, at their clinic, they test at 3, 9 and 12 weeks on tx for those doing the12 weeks.

It was so refreshing not to be 'talked down to' and Iearned some stuff too.
All in all, I'm a very happy bunny after the hotpotch of arrogant so-and-sos I've encountered over the past couple of years.
So refreshing and good to know there are still some genuine caring Drs out there fighting our corner.
Had to travel, but so worth it. Delighted.
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: mgalbrai, Chejai, Ariel

'In which LG seeks Redemption & makes new friends' 7 years 2 days ago #9641

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Good news. #flower #flower
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND
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'In which LG seeks Redemption & makes new friends' 7 years 2 days ago #9644

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Hi LG,

Fantastic news about your new consultant! So glad you found one who's on your team. :+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:
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'In which LG seeks Redemption & makes new friends' 7 years 2 days ago #9645

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LG, That's great news about getting a new Consultant and feeling 'good' about him straight away is a good sign! #love #flower


BTW GAJ, love that your fishing dude (avatar) now has colour - is he seeing the world through different lenses now ;)
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
The following user(s) said Thank You: LondonGirl, Gaj

'In which LG seeks Redemption & makes new friends' 7 years 2 days ago #9649

As folks say here: Good on You!! LG
As we say in the sticks: Git ya sum gal!!
Listening to Starman at the moment.
Life is good :) #love :)
M
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forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
The following user(s) said Thank You: LondonGirl

'In which LG seeks Redemption & makes new friends' 7 years 2 days ago #9661

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Great to hear! LG :+1: #love
GT2b diagnosed 10/2015
since: unknown
11/20/15 VL= 214,070
12/4/15 ALT=18 AST= 24
1/16/16 started sof/dac
2/13/16 @4wks VL=UND ALT=13 AST=22
3/12/16 @8wks VL=UND ALT=10 AST=18
4/9/16 EOT VL=UND ALT=11 AST=19
9/23/16 SVR24 ALT=11 AST=22
The following user(s) said Thank You: LondonGirl

'In which LG seeks Redemption & makes new friends' 7 years 2 days ago #9665

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Great to hear LG
It is a total drag to feel frustrated with your specialist
How good is that bloods regime I like it. Nearly 3 weeks here and I am hanging for the 4 weeks
That place sounds spot on babe :+1:
Love your posts
Ariel x
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

'In which LG seeks Redemption & makes new friends' 7 years 2 days ago #9672

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Thank-you everyone #flower #flower

I post this, because previous consultants have actually made me so miserable I have felt more ill. The they say 'try to relax' and suggest massage or yoga etc Apart from the fact many of us are working parents, many on low incomes and short of time with fatigue,the best way we can 'relax' is knowing we have a consultant offering Appropriate duty of Care ! Their hands may well be 'tied' in some respects, due to health authority rules, but there is no excuse to be arrogant, dismissive or rude, even telling lies and not offer even the most basic of observations while waiting for or during treatment. My GP said 'It's important to have faith in those who are treating you' -This so true ! It's a negative thing all round if not - I still don't get the reason why some public health care medics feel they have the right to treat patients like this . It should be a mutually respectful relationship and not one of one with power lording it over an already ill /stressed patient!

I have been through quite a lot getting where I am now, with a supportive GP and consultant. I had to travel quite a way to see my new consultant and it cost me in train fares and an over-night hotel, but it was worth every penny. If you are living in an area that has an alternative option, I say change. Find out what it takes to change, investigate, chase up, contact other specialists, do not give up. It is not right that we live in fear of some of our health care providers. (or anyone else for that matter!)

This also applies to receptionists etc - Regarding my previous post on the abusive (yes DT is correct, it IS abuse) receptionist at my local hospital, I am pleased to report that I mentioned her behaviour to someone who is in a more senior position and has beaten HepC themselves ; They have had a 'quiet word' with her manager. Don't let these people bully you. It's not acceptable - at all and if more of us stand up to them, a picture should emerge as to who these individuals are.

I shall go armed with the facts and ready for my own little 'ray of sunshine' for next bloods there. It's a pity my new hospital is such a journey, staff were lovely, the nurse was so caring and kind and who got my bloods without pain, lumps or bruising and barely a mark and didn't flinch at my request of a butterfly needle. A sign of a well-run treatment centre with a Dr who makes sure the attitude is good and an example of what can be done with good leadership, even when the NHS or other health authorities may be struggling. There has been pro-active work to create this attitude from what I read, it isn't just luck, good for that person. It helps to create a happier clinic for patient and staff.
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: dointime, Chejai, Ariel, Gaj, flyingfox66

'In which LG seeks Redemption & makes new friends' 7 years 2 days ago #9681

Terrific post LG, and offers hope to many who have been struggling with all the same issues that you have encountered. Your now happy circumstances did not happen by chance. You had to go through much anguish and depressing encounters to get there. You had to travel. You had to refuse to put up with abusive behaviour. Anybody who has never been through this David & Goliath battle cannot know just how difficult it is, and emotionally devastating. But every time somebody stands up to these bullies, as you have done, will put another crack in the wall and smooth the way for the next person. The abuse of power by the NHS monolith is something that needs to be stamped on hard.

Thank you for this happy ending to a miserable journey which should never have been necessary.
dt
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'In which LG seeks Redemption & makes new friends' 7 years 2 days ago #9684

You are right,
My first GI's nurse was just plain mean. Wrote me an email when I requested a copy of my medical records be sent to my new heptologist. The note went like this: "we are aware you are seeking care elsewhere after all we have done for you...."
They told me I wasn't very sick and could wait a few years until the price of tx came down.
That's what they did for me.
M
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forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
The following user(s) said Thank You: LondonGirl, Chejai, Ariel

'In which LG seeks Redemption & makes new friends' 7 years 2 days ago #9686

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#love Excellent post LondonGirl, a shining example to others of taking control of your health and responding to abusive behaviour within the system. While it may not be appropriate to thank your new centre on here please make sure you do so to their managers and others you meet. Praise in the right places can only add to good results achieved. #love

:cheer: :cheer: :cheer:
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, Ariel

'In which LG seeks Redemption & makes new friends' 7 years 2 days ago #9688

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While it may not be appropriate to thank your new centre on here please make sure you do so to their managers and others you meet


Yes, I most definitely will Gaj - and thank-you for the reminder. :+1:
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' 7 years 2 days ago #9693

It is called PUSH BACK!

PUSH BACK when you encounter abusive behaviour - politely but firmly.
PUSH BACK when you are denied tx by your medical provider.

While Gilead has set an unaffordable price for their drugs, other bodies all along the meds supply chain have seen fit to pass on that misfortune to the weakest link - us. It is time for us to push back up the chain and put the stress where it belongs. Time to make life as uncomfortable as possible for those who passed the buck and did not stand up for us. When abusive behaviour is reported every time, when insurance companies are slapped with lawsuits, when politicians are inundated by complaints from voters, then they might find the motivation to deal with the root causes of this catastrophic mess. Which is what it is.

dt
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'In which LG seeks Redemption & makes new friends' 7 years 2 days ago #9696

Yes! Push them back. Maybe with a 2x4 up side the head....

I'm very lucky. This is from another post of mine, but fits here nicely. Can you "self-plagiarize"?


I have a great GI now at the top liver center in the state. When I told her I was taking generic APIs and compounding them myself, she asked if I would still allow her to monitor my tx. She must be related to Dr. Freeman. They could offer some other docs a professional development course in compassionate care.

Anyway, she said I should test at 4 week intervals until the virus was UND. Then, get the "big one" at 12 weeks post tx. She also said I could test at shorter intervals if it made me feel better. She is 3 hours away, so my GP orders the tests and sends them to her.
It is so simple. Why can't other doctors and clinics be as caring?
Mike
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G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
The following user(s) said Thank You: LondonGirl, Ariel

'In which LG seeks Redemption & makes new friends' 7 years 1 day ago #9699

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They could offer some other docs a professional development course in compassionate care.


Great you have a genuine Doc too Mike - Pleased for you. You really learn some stuff with this HepC business, especially about medical professionals !

She is 3 hours away, so my GP orders the tests and sends them to her.
It is so simple. Why can't other doctors and clinics be as caring?

:idea:

My new one (also 3-4 hours journey & also a 'she' btw) is offering Telemed /email for most things too, unless I absolutely need to see her and will forward test results to my GP and I can do tests locally and forward them to her too - Hey, it works both ways :idea: . Really, in the current digital world, it makes life so much easier, especially for fatigued / ill patients and those with less expendable cash and hospital waiting times too. Win win.

My old hospital have now sent me an invite to a new 'consultation' (haven't caught up with notes from my 1st hospital yet, yet alone the fact that I have re-referred to a new one) - My last appointment there consisted of a lecture on why they couldn't treat me, at my expense while that consultant earned some money at the expense of the struggling NHS - He didn't offer any observations and as previously mentioned, lied to me too. I am going to tell them I wont be attending, I just hope the patient who gets my appointment will be offered treatment, or at least be listened to / offered a scan, blood tests, advise on symptoms or something to warrant their journey to the hospital. :huh: ?

An email advising me that there isn't an offer of treatment would have been the cheaper , less expensive and time consuming option for me, but hey, I'm only a patient ;)

These are educated people. You would think they might have thought of using email? or is there more to it, like ridiculous bureaucracy, inefficiency ? Beats me.
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: mgalbrai, Ariel
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