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'In which LG seeks Redemption & makes new friends' 7 years 1 day ago #9717

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May I suggest you send them a very polite letter of refusal stating in a calm business like manner why you have chosen others to oversee your health needs?

Nothing inflammatory (however satisfying that would feel), just a clear outline of the ways they didn't meet your expectations and how your new team does. So while you could comment on the waste of NHS time and money in lecturing you, your consultant didn't lie.....they misdocumented the facts to your GP (I'm assuming you meant the letter stating no fibrosis?)

Probably end up in the bin just like a letter telling them to piss off but there is some chance it will be noticed or at least sit in your file in case someone more enlightened reviews that in the future.

Push back but also sew seeds for change. :)
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 1 day ago #9763

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May I suggest you send them a very polite letter of refusal stating in a calm business like manner why you have chosen others to oversee your health needs?


Yes, I am going to do that Gaj, I will need time to word it carefully, I may send it to your first for a check ;)
In the UK , the HepC Trust are asking for Patient Experience re treatment access, so I'll copy it to them too, their words were "You couldn't make it up" when I told them and they wanted me to go to PALS , the independent official complaints people.
I decided not to at that point, as it would waste my energy on negative action, but as soon as I am better, I will collate all these NHS 'mishaps' and send it all to the relevant parties involved. That hospital is an awesome hospital, one of the top hospitals in the UK, I actually liked going there before my old consultant left, but one Dr like that just ruins it.

(I'm assuming you meant the letter stating no fibrosis?)

There was also a very awkward start to my consultation where the consultant contradicted himself while trying to make me feel guilt about more sick patients ... (This is what really upset me) - No time to type now, will edit this later, but he realised and I realised early on in the 'consultation' that he had made some sort of 'misleading' statement - - I said nothing, just looked him right in the eye, it was excruciatingly awkward.
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 11 months ago #9849

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About to take pill - Day 25 - There will be 3 little pills in my pill-box and then will have completed one month !
Time is moving fast and I have one empty bottle.
Unlike previous stories where patients can't wait to bin their empty med bottles, sharps & boxes, I haven't quite been able to put my 1st empty bottle in the recycle bin yet :)
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 11 months ago #9866

Know what you mean LG!
I am keeping my Mesochem shipment package and paperwork as well as my Harvoni bottles. Whenever I feel a little down or rough around the edges, I can look at them.
Or, when sanity starts to take hold in the drug pricing world, I can show someone the Harvoni bottle and say this used to cost $33,000...
Happy four week test!
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
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'In which LG seeks Redemption & makes new friends' 6 years 11 months ago #9869

LondonGirl wrote: Time is moving fast and I have one empty bottle.


Yes, it is moving fast. I have been thinking about how different this forum is to the old days on medhelp. People used to be on there for years while they were warehoused. At its core there was a long-term community, and SVR was a relatively rare event. By contrast, people here are moving through quickly. I guess a lot of them will make an appearance, get rid of the virus, and then move on to live their lives. That's of course a good thing. Just different.

dt
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'In which LG seeks Redemption & makes new friends' 6 years 11 months ago #9897

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I kept my riba bottles and made a sculpture of a person, stuck nails into it to join the bottles.
Then I binned it.
I returned the last five weeks of that repulsive stuff when the locum pulled me off peginf riba
I consider the sculpture and my little ceremony as a cleansing of the specialist who never told this lady here anything about fibroscan or gene tested me or sx and at F0 (found that out post tx!!!! By locum) but he did know VL only 422000 started me on a journey to hell all in one day from results of activity to that.
I didn't know ANYTHING about HepC at all
I was a mum with a daughter in final year of school and one in Uni she's an International Scholarship recipient.
Now the damage has been done to me I have education
But I was very hurt by what happened
I'm glad I had my little ceremony in private here
It was cathartic in a sort of black weird way.
Day 22 here so not far behind you babe #love
I look at these bottles and think of them as priceless and they are all about kindness and saving lives and moving forward and getting back some of what was taken from me for no reason at all.
That's all.
#rant over

Love always here Ariel xxxx
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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'In which LG seeks Redemption & makes new friends' 6 years 11 months ago #9903

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BIG #love 2 U Ariel #flower #flower #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 11 months ago #10207

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Same here! #love always, even after treatment!

I still have two weeks, quite some money, but I'm going to keep the powder...LOL It could be a nice trip to London though, LG!!! #flower

Anyways, all the papers of Mesochem, empty capsules, weighing scale of Kern, can't seem to get rid of them psychologically LOL...

So in total value of 350 eu lol!!! mwahah
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'In which LG seeks Redemption & makes new friends' 6 years 11 months ago #10208

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It could be a nice trip to London though, LG!!!

Yes !! You are always welcome :cheer: #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: Life

'In which LG seeks Redemption & makes new friends' 6 years 11 months ago #10269

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Dear lovely FixHepC friends, Just a (not so) little update.
Had bloods taken at new hospital (3 weeks into tx) am waiting for full results, but consultant emailed me with the short version :

VL 515
Alt 22
Ast 24
BILIRUBIN 7
ALB 41
Vit D normal
Thyroid normal
Kidney normal
Platelets 144

I have read with interest others are noticing sensitivity re sad things and I can report am the same !
I am easily moved to tears, wish to avoid the news, can't stand shouting, stress etc...but the worst thing is if I experience any sadness it lingers and deeply and can send me into some sort of a depressive state. I have started asking myself hard questions about some naïve choices I made in the past re my choice of partners, there is some self-blame and if I am brutally honest, I need to try and find forgiveness in my heart towards some others. Hard. I am also extremely aware of the time I have spend barely 'living' since diagnosis and how my career and personal relationships / friendships have suffered and resentment to the total lack of support this condition offers, physically or emotionally.

I heard some music recently that has affected me so deeply, the song wont leave my head, I wake up and there it is still going round and round - It is a beautiful, intense, sad song and just the kind of song I like, (also performed by a previous hepper and written by someone who had recently suffered a personal tragedy...) I feel I need to retreat somewhat at this stage of tx and my instincts are that this is caused by a physical thing, possibly the meds themselves as well as the thoughts and hopes we go through after waiting so long for treatment and the healing process . We will also need to be cautious at EOT I feel.

Apart from that, I am pleased the VL is heading in the right direction, although now I wish I understood the 'log' thing (if anyone should care to explain in short, easy speak ?) I sort of get it, but then with VL 1157 down to 515 with in a week, is this a 1 log or a 2 log? :unsure:

The other sx I feel I should rather reluctantly mention, is bowel movements and constipation, strange stools etc - Not my favourite thing to publically discuss (!) but after all, we help each other by mentioning no? I have read that taking a Magnesium tab can help - This is also interesting, as I stopped the magnesium during tx as wasn't too sure if it was an actual ok ? :unsure: -
I took a magnesium last night and it helped this morning (sorry if too much information! - I really do hate sharing this kind of thing)..

Also interestingly, my lower back pain has returned quite badly - Is it all connected? I always suspected my lower back pain was digestive system, rather than skeletal / muscular - When I mention this pain (throbbing worse at night) I am met with blank stares from Drs - (Why?) This pain was what got me diagnosed in the first place, it was so bad, I couldn't walk and has been going on for nearly 2 years, although I believe helped to the point of disappearing by previously taking magnesium and havin Epsom salt baths.

I am generally feeling loads better all this moaning aside :) and waiting for consultants letter with full blood results and advise on when to take next VL test - as I am now past the 4 week mark and into bottle 2, but am thinking not to rush it, my consultant does tests in 3s, not 2s and 4s, can't help thinking this is the sensible option after reading more and more about Vl testing from you lovely lot on this forum.

Hoping this long rambling post is making sense :silly: BIG #love to 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: dointime, mgalbrai, Ariel, isaing4

'In which LG seeks Redemption & makes new friends' 6 years 11 months ago #10273

Excellent numbers!!
I really can't contribute much to the mental sx of tx, due to my Lexapro use. I am on a 10 week "weaning off" program and have 28 days to go. Then, I will just have oi keep up with one BP pill each day.
I did have "watery stool" off and on through tx, but it may be related to the Lex, as it still happens occasionally.
Head Up Girl!
You are getting there!
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
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'In which LG seeks Redemption & makes new friends' 6 years 11 months ago #10277

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Hi LG #love

Sorry you are feeling low :( . But glad your VL is moving in the right direction. Loads of time to finish the rest off. Who was it on here who likened the possibility of EOT to being set free on a dark country road with no map? Yes it will be strange for sure, this disease has been part of us for so long. And part of our identity since we were diagnosed. I know what you mean, initial euphoria at knowing we will be cured, the extra energy, and then.....a long hard look at our lives as they are.

As far as the, aherrm, bowel movements go - I have had a bit of constipation as well. Do you use the bio active yogurts? I find they help and I'm pretty sure I read on here dr f saying they are OK on tx, but best double check that.

Lots of love to you LG #love #duck #flower #love #flower #love #flower
Will be in touch later 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 11 months ago #10278

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initial euphoria at knowing we will be cured, the extra energy, and then.....a long hard look at our lives as they are.

Well put Debs. I also think it could be a physical thing too, as usual, just my instinct .

As far as the, aherrm, bowel movements go - I have had a bit of constipation as well. Do you use the bio active yogurts?

Used to eat a lot, it's true, I haven't of late, mostly due to traveling around a bit and not getting my own food in. (Hating supermarkets more that ever + horrible weather!) Will brave outdoors and get some yogurt, thanks for the reminder #flower

Lots of love to you too Debs and thank-you for you kind response :+1: #love #flower ....... #duck :)
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: Debs

'In which LG seeks Redemption & makes new friends' 6 years 11 months ago #10299

If you want something inert to get the bowel moving, trying psyllium. It's just a food really so shouldn't mess with your tx. I am a bit of an expert in that area as the virus seems to have given me a very sluggish digestion. Try to get the organic stuff from a health food shop rather than those toxic preparations they make in the chemist. Mix a tablespoon with plenty of water twice a day and drink quick before it turns into jelly. Then drink a large glass of water.

I find if I don't keep "moving" my emotional state suffers. Not on tx yet of course, but I have something of an emotional reactivity to situations that I blame on the Hep. Usually at times when I could most do with being cool calm and collected.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia

'In which LG seeks Redemption & makes new friends' 6 years 11 months ago #10300

Probably a good idea to take it at the opposite time of day to the meds, just to make sure it doesn't interfere with absorption.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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