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Ariel takes the Plunge 8 years 3 months ago #10080
Hi Debs thanks so much for your popping by I was stoked to read how you're travelling I'm feeling tired at the moment its good to let my body rest Some of the stress in my life which has snuck in via the HCV brain alley is being removed as my clear thought and articulate voice returns I'm really quite surprised at just how everything is starting to fall into place I remember explaining my feelings by likening my life to a big jigsaw puzzle which I could do but although the pieces were the right ones I just couldn't slot them into their positions Well they are slotting in now one by one Some of that's easy and some a bit confronting as I work through my big picture Moving forward I am looking forward to working again, possibly will need to sell up my home too, hopefully can wait until after tx, and downsize a lot. Only can be better as I move along the track to wellness. And here is one of my anthems and credos Again it's from a surf culture Film The famous Morning of the Earth This is Simple Ben 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 | |
Ariel takes the Plunge 8 years 3 months ago #10083
Lovely relaxing track Ariel, played it while I'm doing a bit of work, but kept looking at the video, kept thinking of the phrase " in your element." Looks great.......... Debs 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 The following user(s) said Thank You: Ariel | |
Ariel takes the Plunge 8 years 3 months ago #10102
Morning of the earth, what a blast from the past, thanks for the song! EOT UNDETECTED Week 8 all bloods within normal limits Week 4 Undetected 2016 - 28 January started Harvoni & Riba treatment VL pretreatment 639,000 alt- 77 2015 fibroscan - 6.6 2 x non responder peg interferon & riba geno 1a The following user(s) said Thank You: Ariel | |
Ariel takes the Plunge 8 years 3 months ago #10110
Ah Ariel, brings back good memories, thanks for that. A better time, a happier place. x J the young dragon slayer is: HepC 1a since birth Male aged 15 VL 2000000 Started Twinvir/ 10-11-15-then Sof/led. NO sides so far ! after one week VL : 37 after 4 wks VL : UND ! EOT 2/2/16 UND.! 4 wks. post tx results....pending.... 7/3/16 VL result : 4 week post tx: SVR ! 12 weeks SVR ! 24 wks SVR yeeaa!! The following user(s) said Thank You: Ariel | |
Ariel takes the Plunge 8 years 2 months ago #10136
Thanks Magpie and CJ and Debs and other friends What a superb soundtrack for a film it's really my favourite so grounding and uplifting all at once Up too early here a lot going on. Also it's probably a good day to get my bloods done I am day 26 and see clinic next Friday with a bit of a push my VL might get through in the week.... My hair and skin are really great and I have put a kilo on its not huge but its a sign I think a lot of HCV patients have to deal with stressful lives oh well it's going to be okay clearing not just the virus but other unhelpful things are part of healing ....... I may as well pop in for the bloods today a bit early but I can't wait any longer Not much else to share just fatigue in my bod, a bit of pain not too terrible Probs the legacy of peg/inf nothing to do with this tx anyway Have a great weekend friends Splashes 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 | |
Ariel takes the Plunge 8 years 2 months ago #10171
Woohoo Bloods done And now for a song to capture my mood: 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 | |
Ariel takes the Plunge 8 years 2 months ago #10395
Dear friends, Thanks for the support in my messages re the interferon being given to me in 2012, when the new meds were already known about, when I had full health but for a rash, was surfing four or more days a week, and a career professional. I knew nothing of this illness, was told nothing, was told nothing about peg/inf, was told nothing about sx and well...it ruined me, but mostly when I look back now with education, no fibroscan going in, no liver damage found, the gene testing after and finding the C/T gene anyway, all this done by a different specialist of course.... and the extremely low VL going in... I have so far had three surgeries since to fix up things. I developed abnormal lymph cells on tx...I was still detected at 13 weeks and left on it until my heart was at risk at 43 weeks...*sighs* I had no idea and no education and nobody. Since that I have done training in Community Service at tertiary level, just too add to my qualies so I know now how to talk the right language, ( I have a Bachelor and done a Masters in my field) I became a lobbyist and have spent three years lobbying for thee release of the DAAs. I have read everything I can get my hands on...it has been a crash course in trying to turn this around. My stash of letters is very thick, and the frustration is enormous, I have even made phone calls to the CEO's of the big pharma I didn't care about the cost of the calls, I care about the cost to our lives.... I may be on DAAs now, but this is fact. It did happen. I was in a LOT of pain physically. It is the last day of Week 4 today. I had my bloods done on Friday as I said. I feel great. yes there are some sx, but they are manageable. I think we know so much about the human condition from this illness and these times we have been through, be it a case like mine, or a story of having a liver transplant, like a friend of mine had, which is no party that's for sure...but they got through, yes they got through. I think song from Cinderella sums it up, and yep it may sound' corny' but that's okay too..... Love to all out there 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 | |
Ariel takes the Plunge 8 years 2 months ago #10399
| You know I really think that the specialist who did this to you should be prosecuted for grievous bodily harm. That level of neglect needs to be legally addressed. I wonder how unusual your case is too...possibly scope for class action. F49HepC25ysGT1a "mild" Harvoni 12 wks Brisbane, Australia The following user(s) said Thank You: LondonGirl, Ariel |
Ariel takes the Plunge 8 years 2 months ago #10400
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don't know why this posted twice, a bit tired this side of the world maybe 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 |
Ariel takes the Plunge 8 years 2 months ago #10402
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The question is, "why"?? Although my 3rd specialist experiences made me ask the same question, I was not so physically harmed by his actions and was more informed than Ariel was at that point. However, I wasn't always that way when first diagnosed, again like Ariel, I was in shock and very vulnerable. I have also read and read since then and when I witnessed my consultant telling lies in person and later on paper, I can still only ask the same thing - Why? Is it a bullying thing? Arrogance? Power trip? Misogynist? Personal dislike? What is it that makes someone who is paid to care for you, as their job, do such a thing? I came out of mine less physically hurt than Ariel, but had emotional distress which really doesn't help untreated patients as I'm sure many of you know well, but for sure Ariel, he needs to answer some serious questions. I will be reporting my old 'specialist' once treatment is over, I think you will too? I am going to leave it until at least 12 weeks post EOT as I see it as a negative during treatment. This time is for us, the patients and we need to concentrate on getting well, don't let that man take anything more away from you. Go get him when you are better and stronger. Well done for posting this, I hope some consultants and specialists read these posts and I hope you're writing thoughts down in your new giant notebook Week 4 already ! Yes, we have all had to be incredibly strong, but now we are softening as the medicines work on us .. hey? Still, we won't be putting up with any more of this crap from any Drs we may see in the future I had the great pleasure of saying to Dr no. 3 (the 1st one didn't show up to appointment and the 2nd retired) - "No, I'm sorry, that just won't do ". Well done for this post Ariel 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 |
Ariel takes the Plunge 8 years 2 months ago #10403
| I think it is a systemic issue. I have had good LFTs for a long time now, and low viral loads, and yet I was offered Interferon by my GP. Admittedly at that time there wasn't an alternative, but still, for someone who is essentially not sick, to poison them like that is crazy! I think the system encourages practitioners to dehumanise patients, and it also encourages and rewards those who are already psychopaths in so many fields. I guess as a very low income artist I have been exposed to so much beaurocratic cruelty over the years that I am automatically suspicious of everyone. Its totally endemic in the system that caters to the sick and the poor. F49HepC25ysGT1a "mild" Harvoni 12 wks Brisbane, Australia The following user(s) said Thank You: Ariel |
Ariel takes the Plunge 8 years 2 months ago #10405
And that's the trouble. None of us are clued up when we're first diagnosed. I was completely stunned for some time, outwardly normal but inside like a zombie. That is the exact time when something bad is most likely to happen, simply because you don't understand what is going on and you have to trust the people appointed to your medical care to do their jobs. As we've all found out, that's a lottery. I wasn't unduly harmed. That was mostly luck. On the downside, a lot less was known about 10 years ago, so a lot of suffering happened because nobody knew any better. But by 2012 they did know better. I think that any doctor who prescribes interferon nowadays without first doing genetic testing of the IL28B allele is negligent in their duty of care. Yet this is still going on all across the UK. I got my own genetic test done via the '23andme' website. Oh yeah, by 2012 I was clued up. If you are a CT or a TT then interferon is not suitable for you. That is grounds for demanding treatment with the DAAs. Completely agree with your post LG. Mop up the virus first. Mop up the bastards next. Clean out the whole damn house. dt The following user(s) said Thank You: Ariel | |
Ariel takes the Plunge 8 years 2 months ago #10408
Well you really nailed it in your that post Ariel It heightens our understanding of the reality in life of tiptoeing on the edge. It is unfortunately true that there are some medicos that cannot be trusted or who are completely so inefficient and incompetent they plainly shouldn't be on the job. 40 years past I learnt the hard way about trust and naivety. I lost my beautiful daughter as a result of medical incompetency. Realising and understanding this has assisted me with regard to decisions I make for well being. I now always second guess and question any announcement, prediction or medical process as you do now. I didn't take up the offer of interferon treatment on numerous occasions as I quite frankly didn't think I would survive. Legal proceedings are something else and from what I have observed by previous experience again that there is a need err on the side of caution and mostly be strong and give yourself time. I do absolutely think that you have a case and I wish you well and strength. and yes this is different I think Fixhepc is an alternative choice and a good one sorry, I do believe this is a gt 1a VL 6m F2/3 FibroScan - 9KPa in 2011 and 7KPa in 2015 sof/dac 10 December for 12 weeks pre tx alt 85 ast 51 4 wk alt 34 ast 31 UND <35 8 wk alt 29 ast 32 UND <15 12wk alt 25 ast 25 EOT 3.3.16 SVR24 UND KPa5.3 F0 in normal range I am well .forever grateful to fixhepc The following user(s) said Thank You: Ariel | |
Ariel takes the Plunge 8 years 2 months ago #10419
Thanks all for your support To Pat1 a huge hug That's the hardest to bear and you alone would know the truth of that I'm on a rest day I used to really grieve on these stay in bed days but on these DAAs I only have to do this occasionally and I see it as just balance Letting the body restore and renew while slaying those nasty dragon meanies Big love A 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 | |
Ariel takes the Plunge 8 years 2 months ago #10420
| Oh Ariel I had no idea how you had suffered....I'm so sorry. At four weeks already......you will be a new person woman! Good for you taking on the system. Pat I am so sorry for your loss. Those on this Forum are so strong and I admire each and every one of you. Lives in Bendigo, Victoria No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal Insomnia the only side effect Undetected at 4 weeks SVR4 - undetected - all bloods good and GP very happy SVR12 bloods to be done at end of April 2016 SVR12 - undetected!!! |
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