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TOPIC: No good deed goes unpunished

No good deed goes unpunished 3 years 6 months ago #10354

  • sonix
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We can only help spread the word, not make decisions for people even if they base those decisions on inaccurate information.
I have a good friend who also has Hep C but more serious than myself as he is F4 and previously failed Inf/Riba. I had a long chat when I first found FixHepC and started treatment, told him how straightforward the process is and thought he might like a headstart. Nope, he's going to wait for PBS availability. Which was announced in the week after I started but I have no regrets about starting 3 months earlier or about spending the dough.

I am reminded of a little fable:
There's a story about a little boy that was on the beach throwing back starfish that had washed ashore. A man came along and saw the little boy throwing back the starfish and told the boy, "Little boy, you're wasting your time. There are thousands of starfish washed ashore, you can't possibly throw them all back. This is nature's way. You're wasting your time, you can't make a difference." The little boy looked at the starfish he was holding, then threw it back into the ocean and said, "Made a difference to that one."
M 61yo HCV+ ~ 30 yrs Gt1a F2 VL 223,000 ALT 54 AST 42 Tx start Sof/Dac 17Dec15.
SVR4 at 7Apr16 ALT 22 AST 22
SVR12 at 9Jun16 ALT 23 AST 25
Melbourne, Australia
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No good deed goes unpunished 3 years 6 months ago #10358

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Love that story Sonix
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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No good deed goes unpunished 3 years 6 months ago #10359

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Yep such a beautiful story Sonix
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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No good deed goes unpunished 3 years 6 months ago #10360

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Gaj wrote:
I have found that it is often best not to respond to strong emotional reactions but rather to consider them a side effect of the Tx and put them to one side until I can process them better, be that overnight or on a couple of occasions several days.

I think that is good advice Gaj.
dt
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No good deed goes unpunished 3 years 6 months ago #10535

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DT, re Ariel, said
"That is one strange story about your doc. I think it is way up there in the wierdness category. Not only could I not have made it up, but you actually had to live through it! Thank heavens you seem like the stable sort, enough to know that any mental problems around are not yours. Definitely stressful to the max though."

Well, I've had some weird experiences re Specialists and other people. Problem is because I am 'vulnerable' being dumped on and told it's 'me' at fault I end up taking that on. Crawling back into my cave, hating people and licking my wounds. Then when I speak to others who have had the same experience with certain individuals, I feel validated but then pissed off that I took their crap :angry:

I totally get why you felt like that DT trying to offer help to someone with the same condition and have it thrown in your face and get stomped on in the process :huh:
Yep, as LG and yourself pointed out - vulnerability and imagination seem to be sx on this Tx - but are we having moments of clarity now and seeing things as they really are? Rather than being told by others 'we're imagining things and being too emotional' - and wondering if they are right.
I'm also choosing to avoid certain people for now.

#love to you all.
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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No good deed goes unpunished 3 years 6 months ago #10547

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You can lead a horse to water, but you can't make him drink it. :cheer:
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs, VL UND, AST 27, ALT 20
EOT labs, VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24, VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
Last Edit: 3 years 6 months ago by Greedfighter.
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No good deed goes unpunished 3 years 6 months ago #10578

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but are we having moments of clarity now and seeing things as they really are?

Chejai - I think you are on to something here. I am certainly having this experience quite often these days. When I reflect on my life I am asking myself what was I doing there with that person? What was I thinking? How did I manage to blank out the crap that I was getting and stay in that situation? How did I persuade myself that certain people cared about me, and all the while their intentions were malicious and toxic to my well being? Or at the very least they were looking after number one and didn't give a damn about me. And the big question - who have I got that has shown me they would actually care and would be there for me if I were to die of hepC? I guess when you dare to ask yourself that question it concentrates the mind and then the veil falls away from your eyes.

I think that these very personal questions go hand in hand with the political enlightenment that comes from the drugs rationing debacle. When you've been thrown to the wolves by the very agencies that are supposed to protect and care for you, when you've seen them upholding the status quo, the exhorbitant drug pricing, and protecting their own arses, can the world ever look quite the same again?

dt
Last Edit: 3 years 6 months ago by dointime.
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No good deed goes unpunished 3 years 6 months ago #10633

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Ahhh so in my case I was put on peg/inf in 2012 with no fibroscan no gene test and a VL of only 420,000 and as a private insured patient. Yup.
I was led to fully believe I could die. I hadn't heard of HepC except something about Pamela Anderson in the media and it wasn't nice what was said so I ignored it. I don't go for bitchy stuff ever it's not my interest area in life !
I don't have any emotions about this but the chemical effects did leave me with suicidal ideation during that tx , I now have severe anxiety which I admit and which is significant
I now know that there was no duty of care
I know that I should have had a liver check because a locum pulled me off with a heart failure risk plus other sx at 43 weeks
She then ordered the fibroscan which I had never heard of and the gene test
But I have already told my story.
No not emotionally involved in it, just have got tired because of this leaving me bedridden apart from moments of self driven sport and gutsy mental fortitude since
Too afraid to return to work, riddled with terrifying nightmares, on OxyContin pre this current tx which I quit because of the yellow flag but still on Valium and don't have any issue with that. It makes life okay. Half the time anyway.
That failure to provide me with a duty of care goes further, I was still detected at 4,8 and 12 weeks but UND at 13 yet left on this vile unnecessary stuff why? I relapsed anyway.
I agree with these cautions about emotional things but trust me what I experienced during that absolutely horrid year is the second worst thing that's ever happened in my life. And now, well now I have severe anxiety and ongoing physical damage
I am aware these DAAs are slightly mood altering. Yes. It can be better to avoid weepy triggering things, sadness and grief, and probably not smart to get into any confrontational situations either and blow off at anyone.
But these meds are controllable and most tolerable. Lift any sadness by acknowledging this is a cleanse, reflect on dumb choices (like me believing the guy who put me on peg/inf) and realise how much strength we have had to muster to get to here, in work situations think back and realise that we did it all with maybe a brain fog we didn't even know about and we still achieved so much
I'm proud of who this has made me. I love meeting the friends here
I like how people shoot from the hip
I love how accepted I feel
Stuff the people who wouldn't care if we were carried out in a box
Mines gonna be made of surfboards
I love what Chejai and DT wrote here
You opened up my heart
Big love
Glad I logged in
#love
Splashes and yes I went to the beach because I was a ball of anxiety but now, I feel clear and clean :+1:
Attachments:
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
Last Edit: 3 years 6 months ago by Ariel.
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No good deed goes unpunished 3 years 6 months ago #10923

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dointime wrote:
but are we having moments of clarity now and seeing things as they really are?

Chejai - I think you are on to something here. I am certainly having this experience quite often these days. When I reflect on my life I am asking myself what was I doing there with that person? What was I thinking? How did I manage to blank out the crap that I was getting and stay in that situation? How did I persuade myself that certain people cared about me, and all the while their intentions were malicious and toxic to my well being? Or at the very least they were looking after number one and didn't give a damn about me. And the big question - who have I got that has shown me they would actually care and would be there for me if I were to die of hepC? I guess when you dare to ask yourself that question it concentrates the mind and then the veil falls away from your eyes."
OMG! You've been inside my head DT!"

I think that these very personal questions go hand in hand with the political enlightenment that comes from the drugs rationing debacle. When you've been thrown to the wolves by the very agencies that are supposed to protect and care for you, when you've seen them upholding the status quo, the exhorbitant drug pricing, and protecting their own arses, can the world ever look quite the same again?

dt
Too Bloody True! I don't think any of us will be the same again ...eyes wide open, with our heads and hearts on alert!

Ariel, my heart breaks for what you went through. I'm reminded of my experiences when I was pregnant with my beautiful boy and how very close I came to losing him several times because of decisions made by Dr's and nurses. Can't talk about it now it's too distressing.

Another reminder, talking to my neighbour yesterday, I've watched her health deteriorate rapidly in the past 6 months. She was suffering certain symptoms and was referred to a Specialist who did a biopsy on an artery near her eye and prescribed prednisone. So, for months I watched her swell up, especially in the face like the Michelin Man (Hahaha showing my age!). I had looked up the diagnosis at the time (forget it now) and saw that the only Tx available was prednisone, high dose for 2 weeks and tapered down to max of 20 mg/pd. She's gone from being very active, even though she's in her late 60's, she could do more than me! A friendly and sociable person to being weak, fatigued, moody and cranky.

I kept asking when was she going to see the Dr because she was supposed to be tapering down her dose, I told her the swelling of her face was a side effect. She could barely swallow, couldn't drive far anymore, her eyes were in pain and blurry. She argued the Dr knew what he was doing and the 'swelling' had nothing to do with the drugs!

Anyway, she got an appointment with another Specialist the other day, and he told her he didn't think she had this 'tumour thing' at all, he didn't understand why there'd been no follow-up and that she should never have been on 50mg of cortisone per day!! And that the swelling and other symptoms were from the drugs!
She's shattered and feels like her health and wellbeing have been stolen from her and she wishes she could sue the other DR.

There is no end to the stories, we've either all experienced personally or know someone who has had their lives ruined by the medical professionals we put our faith in and our lives in their hands. That being said, we also have the stories of those wonderful medicos who have saved our lives! For me the visiting Specialist who saved my precious boy! And Dr's like our Dr James who make it possible for us to have a future #love #love

Sending you all Big Ehugs and Love :) #love #flower
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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No good deed goes unpunished 3 years 6 months ago #10948

  • Ariel
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Ouch predisolone here
50mg weaning regime for the last five years
Never really bothers me at least it helped suppress the granuloma
I hope the granuloma goes with the virus but that's how I was diagnosed
It took six months because they thought it was fungal and all sorts of things that it wasn't
I was so healthy apart from the rash that's why
But I am off predisolone for the first time since August 2011
I hope your friend gets the right answer asap Chejai xxxx sounds messy
Hugs
Here's to the first day of week 6 for us #flower
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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No good deed goes unpunished 3 years 6 months ago #10965

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You will be at some risk of an Addisonian Crisis after that long on pred.

emedicine.medscape.com/article/765753-overview

Have a look at the "presentation" tab and don't ignore the symptoms.

Emergency home treatment would be to take a bit of left over prednisolone.
YMMV
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No good deed goes unpunished 3 years 6 months ago #11048

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Thankyou Doctor James
I'm on bedrest and a little break from screens
However I did see my GP today and we went through the old treating doctors regimes on pred with me
He was happy with my weaning as the past month prior to tx I was only on 5mg
The thing that has changed is my BP
It is highly elevated and I will write a pm
I'm prescribed up from Coversyl 5mg to Idaprex Combi
I would prefer not to put the figures up here will inbox
GP2U won't work on my account not sure why?
Regards
Ariel
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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No good deed goes unpunished 3 years 1 month ago #19369

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Hope I'm not going too off topic, but Ariel, your post about the horrible care you were given when you found out you had hep c struck a chord. I was put on two clinical trial of the poison duo inf and riba, Failed the first one, didn't respond, then my doc told me about the second trial. You inject daily. So, I felt like I had to tough it out and do it - willpower and all that.... OMG, it was brutal, it was cruel, it put me in the hospital and I nearly died. After I got out of the hospital the doc in charge of the trial asked me when I was going to start up again!!! I was shocked he even asked me. It took me quite a while to come back to some normalcy, and I still don't know what kind of damage it did to my body. I'd like to see some research done on that. :angry:

Later on I saw another hepatologist, this time a good, thorough one. He did genetic testing which showed I could never have responded to the interferon. All that for nothing, and worse, now I am not 'tx naive' and have to treat longer. I wish I wouldn't have treated before, but hindsight is 20/20.

So, done with my b*tching.... glad to still be around, and so lucky to be treating now!
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No good deed goes unpunished 3 years 1 month ago #19370

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Makes me glad that I told the doc who very strongly recommended I go in interferon to go to the far queue.
I didn't say that, not really but I did say I would rather die.
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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No good deed goes unpunished 3 years 1 month ago #19371

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Last week I remember seeing an older post in which someone had in an extremely thoughtless way, expressed doubt about the devastating effects interferon therapy can wreak physically, spiritually, and psychologically. This thoughtless post had been directed at Ariel.

I remember thinking to myself in response to the idiot post, "This lady (Ariel) has been through absolute hell at the hands of her doctors, and her family. In what parallel universe do you get to pass judgement on her pain, and life experiences?"

Interferon therapy can be a special kind of isolating hell for those who have endured it. To endure it without support, or worse under the ignorant and withering judgement of people who have no idea what it is like or how it feels, can be particularly isolating and traumatic.

When I had to stop Interferon because I was turning a really bad corner, my Gastroenterologist's opinion was clear. In his mind, the problem was me, not the medication. If only I had stayed on another six months. If only I had another easier to treat genotype, blah, blah, blah. I never went back. Never looked back. There were no answers there, only sickness, failure, and judgement.

I'm with you, Beaches. Interferon again? I'd rather die. So glad I found Dr James, FixHepC, and the REDEMPTION trials.
Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016
2 Week Results 20 June, 2016 AST 19, ALT 32
4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35
6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15
8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND
12 Week Results 31 August, 2016 LFTs Normal, VL = UND
EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4"
SVR12, 21 Nov 2016. CURED!!!
Last Edit: 3 years 1 month ago by fitz.
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