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Post Info TOPIC: More tests


Guru

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Oh dear Iris, a good but disappointing 6.5 kPa! Had a couple thoughts on the matter and pm'd you. Hang in there. Rest. C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

(SEE UPDATES IN BIO)



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Thank you again smile

I had the fibro scan test today. No go, still at f1-f2 (6.5). I broke down in the office, the tech had originally said it was f-2 guess she was wrong. I wanted to scream, how can good news be such bad news? She asked if I could move to Nevada the protocol there is different. Anyway there was a drug I can't remember the name she wanted to see if insurance would approve, but she was going to submit for Harvoni first.

ok that's all for now I'm really tired . BB, Iris

PS Tig...you may want to move this to "living with Hep c" sorry for the wrong location



-- Edited by Iris Dragonfly on Tuesday 1st of May 2018 11:55:53 PM

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in the silence of the woods, you will not be alone- Chief Seattle

58 years on planet, Female, diagnosed 1976 as non a non b, VL 3mill+, Fibro f-1f-2, Genotype 1a, treatment naive†



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Hang in there Iris - sent you a thought in a PM. C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

(SEE UPDATES IN BIO)



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Thanks you all :) I never know what to expect.except don't expect! I'm to the point I'll probably be afraid if it ever gets approved at this point.

I had never heard that saying Observer, thank you. And Tig, you are always there with good words, not sure where he got into the asbestos he was not in any vocation that used that, they think the old ranch home the boys grew up in my have been the culprit. He also had been dealing with Valley Fever for many many years and was on all kinds of bad drugs for that. Thanks for that info Canuck,† some of the stuff I read about those tests is frightening. Lamont, I had looked at Kaiser when it was time for open enrollment, and it was too expensive for me, over 300 a month. My husband has it thru medicare, but I'm not old enough. Ok so now I'm mad at my drs nurse who told me all of California has to go by that f-2 protocol. Sheeze. Oh I forgot to mention, my replication is up to 8 million and some, that's a first, guess I'll have to change my signature.†

So, I'm still in my bad situation at home, and mom is still 3-1/2 hours from here, I need to get up near her and all I can hear in my head is my cousin saying, "you better get up here!", as he was the closet in miles,† and was the first one by moms side when she had her heart scare a year and a half ago. He was my escape house and now I have no one.

Please God give me the energy to do the things I need to do! Because between the depression of living and now the loss of my cousin, I'm not feeling terribly† motavated at all. Right now I'm† looking at another stint in the flower shop...Mothers day cometh....and that is frightening me, I was so sick and sore after Valentines day. But we are so broke...oh and top top of the SUCK I got a speeding ticket on the way home from the funeral in my little swift rented car. First time in 33 freaking years! I'm not a speeder. ..same county as last time, when my speedo was broke and the speed limit was 55, I was doing 67...ridiculous. This time I was jamming at 83, ok brain not engaged,...bummer.

I should paint more, I paint all kinds of things, pictures, tables, boxes...when I have the energy, I packed up everything the other day, it may not get out for sometime to come. Now I must focus on gathering the congregation for a May Day celebration.

Bb, Iris



__________________

in the silence of the woods, you will not be alone- Chief Seattle

58 years on planet, Female, diagnosed 1976 as non a non b, VL 3mill+, Fibro f-1f-2, Genotype 1a, treatment naive†



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aw, obs, that was a very nice way to put it - I've never heard that one before... a very good way to put it .aww†C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

(SEE UPDATES IN BIO)

Tig


Admin

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Hi Iris,

Goodness, youíve had a rough time of it lately and IĎm sorry youíre having to deal with so many things at once. Keep your head up, this is a test and youíre strong enough to get through it. Iím sure of that. Donít try to handle it alone, share your thoughts and weíll do our best to help you find an answer. Let us be part of your coping mechanism. Donít underestimate the width of our shoulders...

Iím sorry about your cousinís passing. Itís rare for a man his age to fall victim to mesothelioma. Was he exposed to asbestos? There were many military and automotive workers exposed to it decades ago. There are organizations that may provide financial help and awards to patients and their families because of that exposure. If youíre not familiar with those programs, please look into it. There are several free legal services available to help with it.

I think itís a good plan to stay on top of your lab work. If itís going to take some disease progression to obtain treatment, then watching it progress, with your doctorís guidance, is what has to be done. As you know from 4+ decades with HCV, itís slower in some than others and if youíre still an F1-2, thatís a good thing. Some people never have a problem and others have mixed manifestations that lead to some of the issues we know too well. Just keeping a close eye on things, until you get the treatment you deserve, is what itíll take. You can do it!

Always hold onto †

AC29F943-5980-4C0F-A6DD-82C3F34CC3CF.jpeg



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ

Signature Line Set Up/Abbreviations† †Payment Assistance



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Hiya Iris Dragonfly

sorry to hear of your loss and stresses.

Grief is love with no place to go.

I hope things get easier, I hope you get your treatment.

A



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57 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

2 year post tx- dragon slayer†



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Oh, so glad to hear from you again. Wondered how you were doing and your kitty too. Last post (I couldn't find it) you were very busy "flowering", feeling "fluish"?, and had a sick cat to boot!

Glad for an update - but sorry to hear about your cousin and kitty and difficulties. Trying times, and not any easier with the ongoing wait for your treatment. The burden of grief can be heavy. Hang in there, we are here anytime you wish.

I hope you are lucky THIS time with the fibroscan (be sure to tell the operator how important it IS for you to be found to be F2!) and how long you have been waiting. Maybe some magic will happen.

I am glad you have renewed efforts to keep up with your doc check-ups and labs etc. Good stuff.

Don't worry unduly about the APO-A1, mostly to do with your lipids/cholesterols I think - high density lipids (HDL - the good one), they likely did a cholesterol panel on you, so you may also have a low density lipid (LDL-the bad one) result as well, for a lipid panel they may have done trigycerides and a ratio of HDL to LDL. As long as your ratio is OK they may not be too concerned. My lipids were a little out of wack pre-treatment (as well a quite a few other bloods) and they have normalized quite well I believe post-treatment. Good you are being followed for all these things from imaging to labs to the upcoming fibroscan.

Same for the Alpha2Mac - don't fret too much about it being elevated, we see this in chronic hep, it is one of the "markers" that can be used to help assess for fibrosis, so it's a double-edged sword, we don't wish any elevated labs on anyone!, but look at it this way - be glad it is perhaps contributing to achieving the F1-2 reading you have thus far, if it has come up a tad, then good if it helps getting you closer to that "magic" F2 mark!

I vaguely remember (quite some time back) about a "move" you and your Mother were going to make, so, here I was thinking you two perhaps lived together, or lived not so far apart. I am glad your daughter is able to help you with kitty.

Painting? What kind, artistic or otherwise?? Glad you checked in, we fret about ya otherwise. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

(SEE UPDATES IN BIO)



Senior Member

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Sorry to hear your insurance company is using the shortsighted protocol.

I was a F0-F1, 5.7 million VC. But Kaiser Northern California's HepC staff, recommended immediate treatment with Epclusa. My guess is that Kaiser has decided it is much better to cure me before I come in at the 11th hour needing a liver transplant or a year's worth of expensive palliative treatment for a fatal complication of HepC.

I don't know who your insurer is but you might point out that it's much less expensive to have a healthy member than one with a sick liver. Of course it's always hard to get yourself heard by the people who make decisions, they like to hide.



-- Edited by LamontCranston on Wednesday 25th of April 2018 05:28:59 PM

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Lamont Cranston "Only the Shadow knows."

65 years old, retired IT Network support 29 continuous sobriety in AA, ,DX'd in '99 with MS, DX'd with HCV 2, 2b , F0-F1 3/17/2017 VL 5.7m Starting EPCLUSA 7/28/17

No Virus Detected on†November 20, 2017 3 months after EOT



Guru

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Hi guys, hope you are are doing well,† been so busy busy. Then my cousin who was like my big brother died of mesothelioma in 4 months, still grieving that pretty hard. I've been so short of breath but figured I was just working too hard, then after my cousin died so quickly I steped up some doctor visits , got results from recent tests.† One has been high since last year, Alpha, 2 Macroglobulin, don't know if I should be worried with that or not,† doctors don't seem to be. Now I have† high Apolipoprotein A1,† just barely out of the range of 101-198. Also having high Red blood cell count which could mean a ton of stuff. Cardiologist said my ultra sound was relatively good, mumer hasn't progressed as was otherwise unremarkable. Hepatologist has me lined up for the fibro thump test ...again. The Fibrosure is still at f1-f2, my insurance won't cover me unless it is a solid f2. Found out that is the States guidelines and all insurance follows that protocall? Whatever. Just wish the USA could be as progressive as Australia.

So in short, I'm tired. And tired of all this. I had an incredibly scary dream the night before the funeral where I was driving with a loved one as we crashed off a cliff. Realizing we were both going to die, we clung to each other and relaxed. We hit the bottom of the thousands of feet down drop and were crushed and obliterated. The thing that was weird is that it didnt hurt and I wasn't scared. In a way it felt like a message from my cousin that death was ok. And not to be afraid. Yet I miss him very much, and he was the only one who ever had my back. He was only 62. I've been reeeeeeealy tired since returning from his funeral back at the beginning of April. Had to drive my mom, it was about 9 hours from my house. I stayed at moms for awhile after. Now just catching up on all appointments and other trouble that was created in my absence. Last remaining cat is on fluids and that is an ordeal my daughter must help me with. Sigh, oh well back to painting!

Iris



__________________

in the silence of the woods, you will not be alone- Chief Seattle

58 years on planet, Female, diagnosed 1976 as non a non b, VL 3mill+, Fibro f-1f-2, Genotype 1a, treatment naive†

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