It has been my honor to be part of this forum, and the friendships made. I, too, wish you all the very best going forward! My thanks go out to everyone for the endless support over the years. In my best southern drawl, y’all are the best of the best!
Iris Dragonfly said
Oct 2, 2023
Hey Upstate! good to hear from you... thanks for checking in it is really good to hear how people are doing post Tx :)
I tend to worry if the "cure" is forever but so far so good!!!
blessings, Iris
upstate said
Sep 29, 2023
hope all is well with everyone, as it is with me.
Tig said
Sep 19, 2020
Hello!!
Wow, I go away for a couple days and some good friends appear. I guess I’m going to do that more often, lol. I’m glad you checked in! I hope your health and happiness are A+
Like Cheddy and Obs mentioned, the quiet around here is testament to these new drugs and short protocols. Still, I miss all of the daily back and forth with a couple dozen people! I think it was and is our own private HCV Social Media platform, done the right way. We have some wonderful people here. It will always be a welcome place!
Take good care!
Cheddy said
Sep 18, 2020
Well, things are surely less complicated, but it's always good to hear about these anniversaries. Thanks for bringing it up. The bonds formed during treatment were unique and durable.
So, you've reminded me. I'm at four years EOT. I've been so distracted by current situations (pandemic, suffocating smoke) that the special date eluded me.
How are you doing these days? Staying well? Please do.
Love, from Cheddy
Observer said
Sep 18, 2020
Hey upstate
I remember you...
3 years
I hope you feel well and are staying safe and well during these crazy days.
yes the forum is verrrrrrrrry quiet which shows to go you, the new treatments are fantastic
upstate said
Sep 17, 2020
'bout three years since svr, so around anniversaries, I think of you guys.
Interesting not to see much activity here on the forum...I guess because successful treatment is easy to come by..so many happy endings...
anyway...I hope you are all well...
you mean alot to me
lamassu said
Sep 14, 2018
Hey upstate,
Congrats on one year SVR! Don't be a stranger glad you are well.
Canuck said
Sep 14, 2018
Hey upstate!
Yaaaay - so glad to hear from ya, and as usual, with very good news!
uh oh, wait a minute - oh geesh, now I gotta do countin', lessee, if EOT was Aug 2017, then ... this now would be considered to be just over 12 months later? - so ... this would be your SVR 1 year??
heeeey, wait a minute - dejavu all over again, i thought we celebrated your 1 year a while ago for some reason! at least we were talking about one year celebrations over on your other thread a while ago - what the heck? - oh well, SVR12's, SVR 24's, 1 year's - no matter when, we will always want to hear from you ANY time, and of your good news, ANYtime and we will all party-hardy in celebration of your cure for you, everyday, fer sure.
Seasons pass holder at Club Zero. C.
Cheddy said
Sep 13, 2018
Wonderful news, Upstate.
Thanks for sharing the good stuff. You have definitely pressed the reset button. Isn't it swell to bring this business to a close. Stay in touch, though. We like to hear about the recovery from the recovery and the return to whatever normal is!
Big grins from Cheddy
Iris Dragonfly said
Sep 13, 2018
so this was your one year test? you are good?
HORRAY!!!!
Thank you for checking in.
Blessings, Iris
Tig said
Sep 13, 2018
Thanks for the great update! Good to know you’re doing well and enjoying life. That’s what this is all about! Stay in touch, its always good to hear from you.
upstate said
Sep 13, 2018
hey guys..
new bloods today are all good...
Liver is doin fine...phew
Although I don't post much, you'all are never far from my thoughts...
lotsa good...
peace.....
Canuck said
Aug 11, 2017
Geez upstate, I didn't know you spoke pythagoras!! I'm impressed. Bilingually fluent in both hemispheres are we? heehee
Once you get to feeling 110% again, which shouldn't be too long, wagering on how many cylinders you got firing now - my partner said you should run out and build yersef a set of stairs. You got the angles down pat.
(PS - it was my human clock, calendar and calculator who explained your language and spelled it for me too). C.
Tig said
Aug 10, 2017
upstate wrote:
canuck...
hehe
fog is gone
the square of the hypotenuse of a right triangle is equal to the sum of the squares of the other two sides...
wow
Huh??? Maybe I should try some of that stuff!! You sound very edumacated, lol! I'm gonna have to look some of that up. What's a right triangle? I never knew there was a wrong one...
upstate said
Aug 10, 2017
canuck...
hehe
fog is gone
the square of the hypotenuse of a right triangle is equal to the sum of the squares of the other two sides...
wow
Observer said
Aug 9, 2017
Thanks for sharing your fabulous,awesome ,wonderful and excellent news with us.
I am truly happy for you to be UND!
yaya
Alison
Canuck said
Aug 8, 2017
Ah, another epclusian warrior wins! And that just how we do it!
Welcome to Club Zero. Mind you, your seat was already reserved for you here the day you recieved your epclusa, and you did (already) confirm the reservation 8 weeks ago, we are still thrilled you have physically arrived now, and will be lounging around with the rest of us after the battle, taking a well-deserved rest from the war.
I know you have been celebrating for weeks now, but still, there is nothing like thrills and chills winning this gives us.
I liked your "head up high" with butterflies in your stomache while glancing the lancing blows at the lab drawing blood skirmish.
Wonderful words, aren't they, to savour - normal, undetected, won, did it, end of treatment!
And the only scars left, may be on your index finger pushing reload so many times!
I am thrilled for you, and will be again, to hear your ongoing progress and another und reward at EOT+12!
Ya, march strong bro. Lucky guy and good warrior! C.
OK, fog-test, when the mists clear over the battle field, do this math - what is the circumference of 0? hahaha Tricky eh? Give ya a hint, the answer can't be shorter than a piece of string.
Tig said
Aug 8, 2017
Congratulations!! It was never in doubt. How wonderful it is to hear these reports. They never get old and I'm beaming a big smile your way.
Your report is a BIG FAT
upstate said
Aug 8, 2017
12 week blood draw...VL not detected...
Seems like I plugged myself into the correct forum...awful lotta good news recently...myself and others..
Thanks for the vibe...
Tig said
Aug 5, 2017
Stellar liver enzymes! Perfectly normal function. I think I can safely say you're going to be very pleased with the viral load (lack of it)... WOOT!!
Let us know as soon as you find out and be careful, you don't want to break that reload key!
upstate said
Aug 5, 2017
been eagerly pressing reload on my test results page till it was posted this morning....
ALT 17
AST 20
VL results prolly by next wednesday...
Interesting feeling when 7:30 AM passed this morning and no pill.
Tig said
Aug 3, 2017
Not to worry my friend!! I have it under good authority that all will be as desired
upstate said
Aug 3, 2017
hey man
you read my mind..
I actually have some butterflies in my stomach as I anticipate tomorrow, friday morning, 7:30AM, when, with a quick look in the rear view mirror to see where I was a few months ago, and a bit of sanctity, I'll take my last of 84 epclusa, a word I didn't know existed 4 months ago.
And...
I'll be at the blood lab door minutes later, as soon as it opens, and gladly give 'em the best I got... I plan on marching in strong with head high...
I will admit to trying for the last few days to compose profound thoughts for myself, my wife, who has been a wonderful partner on this ride she didn't know she had a ticket for, and for you guys, my caring, anonymous friends, my talisman of information compassion and strength...You guys who have never been far from me this whole time...No profound thoughts, but I'm not ready to let you'all go yet
Hope to share good stuff as it unfolds and help and contribute where when and however I can...
Thanks
Peace
Tig said
Aug 3, 2017
Time for an update, Upstate!!!
Observer said
Jul 14, 2017
YAY!!!!!
love hearing that you're now viral load undetected!
A
gabbiegal said
Jul 13, 2017
congrats
Canuck said
Jul 13, 2017
Hey upstate!
VERY cool, indeed! Congrats!!!!!!!!!! 2b or NOT 2b, was it ever a question??!! Not for you, not with epclusa on your side! Welcome to famous CLUB ZERO - what a great feeling (of relief at least) it is to get a 4 week UND and then an 8 week UND eh? It's gonna be the same at EOT! I say this only in the kindest way, but from now on, we are breaking it to you gentle-like ... you are going to be nothing but a big fat ZERO!
Glad some of things you felt your first weeks have "pretty much" dissipated. Hope things are wee bit less foggy for you too, for me it was very lightening when the bulk of that started to disappear!
I am so glad your doc got epclusa for you - it was a very good investment in you and your health, especially being that the wear and tear on your liver does not seem too pronounced. You may see quick improvements in your fibroscans/ultrasounds in future if they are repeated for follow-up. (I would ask to know what exact Fscore they put you at, pre-treatment), and by what tests they used to arrive at that number (especially if they did not give you a pre-treatment fibroscan) - then, ask for these tests to be repeated post-tretament so you can see any measurable improvements going forward in the post-treatment months and years (they likely will, anyway, even if you don't ask, but ... better to discuss it i think).. I would ask for another abdominal U/S if they have not offered you one 6 months to one year post-treatment. These are also very rewarding things to know and see for yourself, if you have those tests done (before and after) and can see/measure and/or find out exactly how much improvements occur over time post-treatment.
Good you are getting the standard 12 week EOT VL and LFT's done. Don't fret about fluctuations in your LFT's, they can do that, and they have crashed so spectacularly from your pre-treatment LFT's, that is just what we want to see! You should feeling jubilent about those puny LFT's, not just your decimated VL! Your LFT's may come down even more, (they may not) and they may continue to fluctuate a bit - it's just they way we happen to be built - yours are ONLY showing that epclusa has done the trick for you. Having lots of LFT's (repeated over time) will show you the best picture of what are quite normal fluctuations and what we are at when normal.
You mention you might be getting another VL and LFT's at EOT+4 weeks, but I am sure they will be asking you to get repeat VL's/LFT's at EOT+12 weeks, and then again at EOT+24 weeks.
Allllmost done, EOT is just around the corner! C.
Tig said
Jul 12, 2017
Excellent news!! WOOHOO!
It was never in doubt, but at the same time, it's always nice to see it in writing! I still remember the day they gave me my first report, that was about four years ago. The feeling of relief was one I have never forgotten. You wonder if it's going to happen and then it does and the weight just falls off your shoulders. It is very "cool"...
Congratulations!
upstate said
Jul 12, 2017
Thanks for being here you guys..
8 week VL...not detected...
Cool
upstate said
Jul 10, 2017
VL blood work is performed tuesdays and thursdays in my neck of the woods.
I should know by wednesday.
Tig said
Jul 9, 2017
Hello,
Hard to believe two months have passed already. It's not uncommon to see your liver enzymes (AST/ALT) fluctuate within the normal parameters during treatment. If there is a significant increase, your doctor will retest to confirm and then find out why, but the elevation you mention isn't, in my opinion. The AST isn't liver specific, like the ALT is. A sharp rise in the ALT is more concerning. Fluctuations occur normally from a number of things. Exercise can cause the AST to rise. If there is a question of possible relapse, the viral load test will show that. If it has elevated, then there is reason for concern. Once it is undetected, it should stay that way.
When do you get the VL back? Share that when you get it. I wouldn't worry about minor fluctuations in the enzymes. That happens normally.
upstate said
Jul 8, 2017
hey all...
8 week mark yesterday..
All good...no side effects for at least a couple weeks...
Blood results today show ALT went from 24 four weeks ago to 25 today..
AST went from 22 four weeks ago to 31 today..
Wish the numbers didn't go up even though they're still in, I believe, an acceptable range..
Haven't received the VL #s yet...
Is fluctuation of the AST upward normal, or OK?
upstate said
Jun 29, 2017
Thanks Canuck...
had an ultrasound around the original diagnosis....minimal scarring, just somewhat inflamed and I think enlarged...no one seemed particularly concerned, so I wasn't either...Doc said tuesday I was in pretty good shape and beginning to heal...
And yes Canuck...I do consider myself lucky...everything has gone very smoothly for me...
Interestingly, I commented to my doc that I felt lucky I was prescribed so quickly. He felt his practice was good at presenting it to the insurance company, and commented that he was able to push it because he felt I was a "motivated" patient..and would be hesitant to prescribe such an expensive treatment if I wasn't...Tough to imagine someone not being motivated...
I have a blood draw next friday, at 8 weeks, another at EOT, 12 weeks, and then a hopefully final draw 4 weeks post EOT...
Fog, fatigue and diarrhea have pretty much disappeared.
All good here
Canuck said
Jun 28, 2017
Glad you had a good doc visit.
So, did he give you any idea what your prior Fscore was, or mumble anything further about what your liver/guts/other organs looked like from your pre-treatment abdominal ultrasound?
And, I can't remember now, but you never did have a fibro-scan, did you? Sometimes they just come up with an Fscore for you based on bloods and other factors - some use the "Fibro-Test or Fibro-Sure" or other blood tests as part of their Fscore determinations.
You are responding well and fast, it would be interesting to know a bit more about the degree of your previously assessed liver firmness/fibrosis, to be able to compare to measurable improvements that will follow.
I know it may not exactly feel "lucky", but I think you were lucky to get epclusa and lucky you are a GT2. GT2's having a good track record for responding well.
So, what is the blood letting plan and doc-office-visit plan, going forward - do you just get another viral load (VL) and liver function tests (LFT's) - ALT/AST/bilirubin, blood test draw at end of week 12 (EOT), and then again 3 months after your finish (EOT+12 weeks)? Or, are they going to squeeze in any extra blood draw at week 8 as well?
Keep drinking lots of water, I found it helps for the fog some too. C.
Tig said
Jun 27, 2017
That's outstanding! Half way and over the hump, that's a nice feeling. I'm happy you were able to present better questions and understand things during your doctor visit. That's helpful in a lot of ways and lets your doctor know you want to be part of the process, not that bump on the log! If you have any questions, please ask. We're glad to help!
upstate said
Jun 27, 2017
Thanks Canuck....
yes halfway there...
Very enjoyable visit with my Doc today too...first of all because I just feel so much better, well really first of all is my good bloods we got to talk about.. and second, or third, I am so much more knowledgeable; able to ask intelligent questions and contribute to the conversation...I'm only able to do that because of what I've picked up from you guys here...thanks again...I prolly just sat like a bump on a log my initial appointment....
.
Canuck said
Jun 26, 2017
Hey upstate,
6 weeks and halfway done! Yay!
Was just reading your encouraging note to another newcomer-fellow epclusian about how, just this last week, you are sensing some lessening of prior fatigue, feeling a little better on the fog front and in the runs dept! That is a blessed improvement!
Great stuff, all 'round. C.
(or, in other words....)
MyMallards said
Jun 22, 2017
Just reading through this thread and the comments about your fog experiences brought me to tears. Thanks for your shares. It's a touchy subject for me. My quick thinking and intellect were a source of pride that came with monetary reward to boot. Not so anymore. I lose my Train of Thought (oh, Tig) and my vocabulary is abysmal because my words speed away on that missing train!
Grateful that I'm not wandering around in this fog alone. :::reaching for a hand to hold:::
Christine
Tig said
Jun 21, 2017
Calling it a mental disconnect is about as accurate a description as there is. I swear, I can think it, decide to act on it, get up to do it, walk toward it and when I get there, forget what IT was! A good bit of the last 20 years, I was on pain management. Combine that with the Hep C drugs and my neural pathways were hopelessly severed! Why can't they come up with a drug that heightens intelligence, recall and motivation? I'm aware of a few that make you think you're better, but they unfortunately are only in the mind of the abuser! Illegal too!
We have several threads here that reference "Trains". I wonder if we should have one titled "Train of Lost Thoughts"? I think it would be difficult to get a seat on. You know it would be full of ideas though!
I also received regular phone calls from the RN and my specialty pharmacy during treatment. I know others that have mentioned timely contact by their healthcare team, but that doesn't occur as often as it could. Some practices are more patient care focused than others and I think that comes down to the people in charge and the staffing complement. Take advantage of their time by jotting down questions ahead of time. As previously discussed, that's exactly when those annoying mental disconnects occur!
If you would like to start a new thread in the On Treatment section, feel free. Once introduced here in the New Members area and treatment has commenced, there are threads there to continue the discussion.
upstate said
Jun 20, 2017
I had composed a long post when, nearing completion I punched the wrong key and the text disappeared. I recall vaguely that it was wonderfully witty but now this rewrite will hafta suffice.
Yes Tig, I've ended conversations abruptly when I've forgotten the subject, or even who I'm talking to. I haven't formed or held an abstract thought for over a month...Area of a circle? forget about it.
Sometime in my brain I know there's a thought, but there's a disconnect before it reaches my tongue.
It's occurs to me that the pill isn't making me dumb. It may actually be making me smart enough to realize I wasn't that bright to begin with.
I'm kinda enjoying some of this knowing there's gonna be a happy ending.
I received a phone call today (my third) from an RN working for the dispensing pharmacy checking in with me, how are my sides? was I disciplined and timely in taking my meds and yes Tig, was I staying hydrated?? I thanked her for disregarding my earlier request that I not be contacted because I now like talking about this with people inside the tent so to speak... I assured her that I knew the difference between fatigue and the fog...the fog is real and should have a more prominent place in the official directions...Anyway, I was impressed with the follow up and TLC non-the-less...Is this diligence because Epclusa is so new they're still gathering field reports??
Canuck...Yes, amidst the flurry of initial blood tests I had a liver (actually maybe all my guts) ultrasound and heard the words enlarged and inflamed but not tumor so I, perhaps self-disillusionally let it slide...I meet with my gastro guy next week and I'll broach it.. My wife hasn't taken the car keys yet but I've heard from the passenger seat "are you ok?" or "thank goodness this is a straight road"..
It's all pretty good in my world. thanks for being here guys
Canuck said
Jun 20, 2017
Tig, are you mimicking me, walking from room to room like that!
Upstate, just for comparative notes, my mental acuity, or rather, very much the lack of, was never more at it's height, than when I was on treatment. Now mind you, I was on epclusa and another 3/4a drug callled VOX (on a trial), so I have no idea what really contributed so much to my deep brain-fart fugue state, (I was very fatigued and not the brightest crayon in the box prior to treatment, or ever), but I tell ya brother, during treatment it was thick, super-thick, my partner took the car keys away from me for a while, and I was glad he did! No snappy synaptic firing going on between my ears for quite a while, felt like tar-baby with my brain matter stuck fast in a sludge quagmire. Oh, the relief when it started to lift. Akin to the first bits of relief one feels getting started on treatment knowing you have obtained the best drugs possible to do the deed to wipe out this virus, and akin to getting that first confirmation of your 4 week VL crash. Nice when the fog starts to fleet, relief from those kinds of things just takes time, and everybody seems different. I am still steadily improving (in many, many ways) over a year later. Things do improve. Water intake was very vital in helping me with any sides while on treatment.
Coddle yourself, remove challenges and stressors as you can, and try to ride the therapy out as patiently and gently as you can with good diet, rest, fluids.
I like your way with words BTW!
Just ask anyone around here, ... do I pry? - if you don't mind sharing, what Fscore tests and results have you had done, did you have biopsies, fibroscans? Any ultrasound imagings. What kinda shape is (was) your liver in, aside from being well on it's way now to being cured of this infection. C.
Tig said
Jun 19, 2017
Good to hear from you again! The brain fog can be debilitating, not to mention embarrassing sometimes. I can't remember (duh) how many times I went completely blank. I would move from room to room and realize I was standing there looking lost. I was lost, I had no idea what I was doing. That would happen in discussions with people on the phone, in person, anywhere it seemed. I assure you that once I killed this beast, my brain activity improved. Now I just blame it on my age, it really can work in our favor sometimes, ha, ha! I wonder, how many people in years/decades gone by, were afflicted with this disease and this issue? What many considered a cognitive problem, may have been Hep C related. Never know I guess, but we can assume anyway...
Have you kept up with your hydration? Keep on it and you'll be looking at all this in your rearview mirror in no time!
upstate said
Jun 19, 2017
Sorry to be kinda cryptic in my original post.
When diagnosed I really didn't have much of an idea what Hep c was, so I needed some pretty rudimentary stuff, which I got from you all. While my doc prolly explained it all to me, it stuck better after the shock had worn off, and was more meaningful when I could read and ponder info from people in the same boat as me...closer to my own perspective...
And, its interesting to learn that we are in the golden age of Hep c treatments, and I'm here, just in time, to reap the benefits. I seemingly, had no trouble securing the epclusa prescription, it was timely anyway, and was able to start treatment very soon after Dx. I'm a lucky guy.
I was very relieved to read about the 'brain fog" that many people referenced as I had no context for my own loss of mental acuity...and emotional sensitivity. Once I realized I was sharing this same Sx with others, I became perfectly content to ride the thing out..and I am...I even find it kinduv amusing looking at it from a third person POV. Anyway, the world can prolly use a little more sensitivity.
Because I got this brain fog thing in spades, but realize I can handle it, I'd be happy to avail myself to anyone who might need reassurance as to the benefits of being dumb, sensitive and cured...
Thanks again for sharing in my progress...
wendyo said
Jun 16, 2017
Talk about coming out with a bang, that was a heck of an intro! YAY and welcome upstate.
Observer said
Jun 16, 2017
Welcome,
I too observed for a long while before joining up...hence my choice of name
Congratulations on your fabulous numbers!
I hope your treatment is being side effect-free because of all the water you are drinking everyday.
A
Canuck said
Jun 16, 2017
Very glad to meet ya upstate, and very glad to hear your good news! Another fellow epclusian cured. Welcome to Club Zero, big congrats on your first UND, and those are beau-ti-ful Alt and AST's now too!
Nice you have been peeking in and that you found it helped. I did that too, quietly peeking in and poking about for a while, but now they can't get rid of me nor shut me up!
I am very glad to hear of every person who is getting epclusa, it is always a good news day!
Good signature line you did up BTW. Do share, if you wish, how all has been going for you. We would be all ears. Admin and moderators are great for info and questions.
Wonderful, your first UND! C.
JimmyK said
Jun 15, 2017
Wow more good news!
Welcome here and make yourself at home.
UND !
upstate said
Jun 15, 2017
Well, you may not know me, but I know you all, and I wanna thank you for the information and attitude that's helped me through the last 6 weeks as I've peeked inside your forum...
You guys educated me, eased my mind and answered questions I didn't know enough to ask...
Got good news today on my 4 week bloods so I came outta the closet...
It has been my honor to be part of this forum, and the friendships made. I, too, wish you all the very best going forward! My thanks go out to everyone for the endless support over the years. In my best southern drawl, y’all are the best of the best!
Hey Upstate! good to hear from you... thanks for checking in it is really good to hear how people are doing post Tx :)
I tend to worry if the "cure" is forever but so far so good!!!
blessings, Iris
hope all is well with everyone, as it is with me.
Hello!!
Wow, I go away for a couple days and some good friends appear. I guess I’m going to do that more often, lol. I’m glad you checked in! I hope your health and happiness are A+
Like Cheddy and Obs mentioned, the quiet around here is testament to these new drugs and short protocols. Still, I miss all of the daily back and forth with a couple dozen people! I think it was and is our own private HCV Social Media platform, done the right way. We have some wonderful people here. It will always be a welcome place!
Take good care!
Well, things are surely less complicated, but it's always good to hear about these anniversaries. Thanks for bringing it up. The bonds formed during treatment were unique and durable.
So, you've reminded me. I'm at four years EOT. I've been so distracted by current situations (pandemic, suffocating smoke) that the special date eluded me.
How are you doing these days? Staying well? Please do.
Love, from Cheddy
Hey upstate
I remember you...
3 years
I hope you feel well and are staying safe and well during these crazy days.
yes the forum is verrrrrrrrry quiet which shows to go you, the new treatments are fantastic
'bout three years since svr, so around anniversaries, I think of you guys.
Interesting not to see much activity here on the forum...I guess because successful treatment is easy to come by..so many happy endings...
anyway...I hope you are all well...
you mean alot to me
Hey upstate,
Congrats on one year SVR! Don't be a stranger glad you are well.
Hey upstate!
Yaaaay - so glad to hear from ya, and as usual, with very good news!
uh oh, wait a minute - oh geesh, now I gotta do countin', lessee, if EOT was Aug 2017, then ... this now would be considered to be just over 12 months later? - so ... this would be your SVR 1 year??
heeeey, wait a minute - dejavu all over again, i thought we celebrated your 1 year a while ago for some reason! at least we were talking about one year celebrations over on your other thread a while ago - what the heck? - oh well, SVR12's, SVR 24's, 1 year's - no matter when, we will always want to hear from you ANY time, and of your good news, ANYtime and we will all party-hardy in celebration of your cure for you, everyday, fer sure.
Seasons pass holder at Club Zero. C.
Wonderful news, Upstate.
Thanks for sharing the good stuff. You have definitely pressed the reset button. Isn't it swell to bring this business to a close. Stay in touch, though. We like to hear about the recovery from the recovery and the return to whatever normal is!
Big grins from Cheddy
HORRAY!!!!
Thank you for checking in.
Blessings, Iris
Thanks for the great update! Good to know you’re doing well and enjoying life. That’s what this is all about! Stay in touch, its always good to hear from you.
hey guys..
new bloods today are all good...
Liver is doin fine...phew
Although I don't post much, you'all are never far from my thoughts...
lotsa good...
peace.....
Geez upstate, I didn't know you spoke pythagoras!! I'm impressed. Bilingually fluent in both hemispheres are we? heehee
Once you get to feeling 110% again, which shouldn't be too long, wagering on how many cylinders you got firing now - my partner said you should run out and build yersef a set of stairs. You got the angles down pat.
(PS - it was my human clock, calendar and calculator who explained your language and spelled it for me too). C.
Huh??? Maybe I should try some of that stuff!! You sound very edumacated, lol! I'm gonna have to look some of that up. What's a right triangle? I never knew there was a wrong one...
hehe
fog is gone
the square of the hypotenuse of a right triangle is equal to the sum of the squares of the other two sides...
wow
Thanks for sharing your fabulous,awesome ,wonderful and excellent news with us.
I am truly happy for you to be UND!
yaya
Alison
Ah, another epclusian warrior wins! And that just how we do it!
Welcome to Club Zero. Mind you, your seat was already reserved for you here the day you recieved your epclusa, and you did (already) confirm the reservation 8 weeks ago, we are still thrilled you have physically arrived now, and will be lounging around with the rest of us after the battle, taking a well-deserved rest from the war.
I know you have been celebrating for weeks now, but still, there is nothing like thrills and chills winning this gives us.
I liked your "head up high" with butterflies in your stomache while glancing the lancing blows at the lab drawing blood skirmish.
Wonderful words, aren't they, to savour - normal, undetected, won, did it, end of treatment!
And the only scars left, may be on your index finger pushing reload so many times!
I am thrilled for you, and will be again, to hear your ongoing progress and another und reward at EOT+12!
Ya, march strong bro. Lucky guy and good warrior! C.
OK, fog-test, when the mists clear over the battle field, do this math - what is the circumference of 0? hahaha Tricky eh? Give ya a hint, the answer can't be shorter than a piece of string.
Congratulations!! It was never in doubt. How wonderful it is to hear these reports. They never get old and I'm beaming a big smile your way.
Your report is a BIG FAT
12 week blood draw...VL not detected...
Seems like I plugged myself into the correct forum...awful lotta good news recently...myself and others..
Thanks for the vibe...
Stellar liver enzymes! Perfectly normal function. I think I can safely say you're going to be very pleased with the viral load (lack of it)... WOOT!!
Let us know as soon as you find out and be careful, you don't want to break that reload key!
ALT 17
AST 20
VL results prolly by next wednesday...
Interesting feeling when 7:30 AM passed this morning and no pill.
Not to worry my friend!! I have it under good authority that all will be as desired
you read my mind..
I actually have some butterflies in my stomach as I anticipate tomorrow, friday morning, 7:30AM, when, with a quick look in the rear view mirror to see where I was a few months ago, and a bit of sanctity, I'll take my last of 84 epclusa, a word I didn't know existed 4 months ago.
And...
I'll be at the blood lab door minutes later, as soon as it opens, and gladly give 'em the best I got... I plan on marching in strong with head high...
I will admit to trying for the last few days to compose profound thoughts for myself, my wife, who has been a wonderful partner on this ride she didn't know she had a ticket for, and for you guys, my caring, anonymous friends, my talisman of information compassion and strength...You guys who have never been far from me this whole time...No profound thoughts, but I'm not ready to let you'all go yet
Hope to share good stuff as it unfolds and help and contribute where when and however I can...
Thanks
Peace
Time for an update, Upstate!!!
YAY!!!!!
love hearing that you're now viral load undetected!
A
congrats
Hey upstate!
VERY cool, indeed! Congrats!!!!!!!!!! 2b or NOT 2b, was it ever a question??!! Not for you, not with epclusa on your side! Welcome to famous CLUB ZERO - what a great feeling (of relief at least) it is to get a 4 week UND and then an 8 week UND eh? It's gonna be the same at EOT! I say this only in the kindest way, but from now on, we are breaking it to you gentle-like ... you are going to be nothing but a big fat ZERO!
Glad some of things you felt your first weeks have "pretty much" dissipated. Hope things are wee bit less foggy for you too, for me it was very lightening when the bulk of that started to disappear!
I am so glad your doc got epclusa for you - it was a very good investment in you and your health, especially being that the wear and tear on your liver does not seem too pronounced. You may see quick improvements in your fibroscans/ultrasounds in future if they are repeated for follow-up. (I would ask to know what exact Fscore they put you at, pre-treatment), and by what tests they used to arrive at that number (especially if they did not give you a pre-treatment fibroscan) - then, ask for these tests to be repeated post-tretament so you can see any measurable improvements going forward in the post-treatment months and years (they likely will, anyway, even if you don't ask, but ... better to discuss it i think).. I would ask for another abdominal U/S if they have not offered you one 6 months to one year post-treatment. These are also very rewarding things to know and see for yourself, if you have those tests done (before and after) and can see/measure and/or find out exactly how much improvements occur over time post-treatment.
Good you are getting the standard 12 week EOT VL and LFT's done. Don't fret about fluctuations in your LFT's, they can do that, and they have crashed so spectacularly from your pre-treatment LFT's, that is just what we want to see! You should feeling jubilent about those puny LFT's, not just your decimated VL! Your LFT's may come down even more, (they may not) and they may continue to fluctuate a bit - it's just they way we happen to be built - yours are ONLY showing that epclusa has done the trick for you. Having lots of LFT's (repeated over time) will show you the best picture of what are quite normal fluctuations and what we are at when normal.
You mention you might be getting another VL and LFT's at EOT+4 weeks, but I am sure they will be asking you to get repeat VL's/LFT's at EOT+12 weeks, and then again at EOT+24 weeks.
Allllmost done, EOT is just around the corner! C.
Excellent news!! WOOHOO!
It was never in doubt, but at the same time, it's always nice to see it in writing! I still remember the day they gave me my first report, that was about four years ago. The feeling of relief was one I have never forgotten. You wonder if it's going to happen and then it does and the weight just falls off your shoulders. It is very "cool"...
Congratulations!
8 week VL...not detected...
Cool
I should know by wednesday.
Hello,
Hard to believe two months have passed already. It's not uncommon to see your liver enzymes (AST/ALT) fluctuate within the normal parameters during treatment. If there is a significant increase, your doctor will retest to confirm and then find out why, but the elevation you mention isn't, in my opinion. The AST isn't liver specific, like the ALT is. A sharp rise in the ALT is more concerning. Fluctuations occur normally from a number of things. Exercise can cause the AST to rise. If there is a question of possible relapse, the viral load test will show that. If it has elevated, then there is reason for concern. Once it is undetected, it should stay that way.
When do you get the VL back? Share that when you get it. I wouldn't worry about minor fluctuations in the enzymes. That happens normally.
8 week mark yesterday..
All good...no side effects for at least a couple weeks...
Blood results today show ALT went from 24 four weeks ago to 25 today..
AST went from 22 four weeks ago to 31 today..
Wish the numbers didn't go up even though they're still in, I believe, an acceptable range..
Haven't received the VL #s yet...
Is fluctuation of the AST upward normal, or OK?
had an ultrasound around the original diagnosis....minimal scarring, just somewhat inflamed and I think enlarged...no one seemed particularly concerned, so I wasn't either...Doc said tuesday I was in pretty good shape and beginning to heal...
And yes Canuck...I do consider myself lucky...everything has gone very smoothly for me...
Interestingly, I commented to my doc that I felt lucky I was prescribed so quickly. He felt his practice was good at presenting it to the insurance company, and commented that he was able to push it because he felt I was a "motivated" patient..and would be hesitant to prescribe such an expensive treatment if I wasn't...Tough to imagine someone not being motivated...
I have a blood draw next friday, at 8 weeks, another at EOT, 12 weeks, and then a hopefully final draw 4 weeks post EOT...
Fog, fatigue and diarrhea have pretty much disappeared.
All good here
Glad you had a good doc visit.
So, did he give you any idea what your prior Fscore was, or mumble anything further about what your liver/guts/other organs looked like from your pre-treatment abdominal ultrasound?
And, I can't remember now, but you never did have a fibro-scan, did you? Sometimes they just come up with an Fscore for you based on bloods and other factors - some use the "Fibro-Test or Fibro-Sure" or other blood tests as part of their Fscore determinations.
You are responding well and fast, it would be interesting to know a bit more about the degree of your previously assessed liver firmness/fibrosis, to be able to compare to measurable improvements that will follow.
I know it may not exactly feel "lucky", but I think you were lucky to get epclusa and lucky you are a GT2. GT2's having a good track record for responding well.
So, what is the blood letting plan and doc-office-visit plan, going forward - do you just get another viral load (VL) and liver function tests (LFT's) - ALT/AST/bilirubin, blood test draw at end of week 12 (EOT), and then again 3 months after your finish (EOT+12 weeks)? Or, are they going to squeeze in any extra blood draw at week 8 as well?
Keep drinking lots of water, I found it helps for the fog some too. C.
That's outstanding! Half way and over the hump, that's a nice feeling. I'm happy you were able to present better questions and understand things during your doctor visit. That's helpful in a lot of ways and lets your doctor know you want to be part of the process, not that bump on the log! If you have any questions, please ask. We're glad to help!
yes halfway there...
Very enjoyable visit with my Doc today too...first of all because I just feel so much better, well really first of all is my good bloods we got to talk about.. and second, or third, I am so much more knowledgeable; able to ask intelligent questions and contribute to the conversation...I'm only able to do that because of what I've picked up from you guys here...thanks again...I prolly just sat like a bump on a log my initial appointment....
.
Hey upstate,
6 weeks and halfway done! Yay!
Was just reading your encouraging note to another newcomer-fellow epclusian about how, just this last week, you are sensing some lessening of prior fatigue, feeling a little better on the fog front and in the runs dept! That is a blessed improvement!
Great stuff, all 'round. C.
(or, in other words....)
Just reading through this thread and the comments about your fog experiences brought me to tears. Thanks for your shares. It's a touchy subject for me. My quick thinking and intellect were a source of pride that came with monetary reward to boot. Not so anymore. I lose my Train of Thought (oh, Tig) and my vocabulary is abysmal because my words speed away on that missing train!
Grateful that I'm not wandering around in this fog alone. :::reaching for a hand to hold:::
Christine
Calling it a mental disconnect is about as accurate a description as there is. I swear, I can think it, decide to act on it, get up to do it, walk toward it and when I get there, forget what IT was! A good bit of the last 20 years, I was on pain management. Combine that with the Hep C drugs and my neural pathways were hopelessly severed! Why can't they come up with a drug that heightens intelligence, recall and motivation? I'm aware of a few that make you think you're better, but they unfortunately are only in the mind of the abuser! Illegal too!
We have several threads here that reference "Trains". I wonder if we should have one titled "Train of Lost Thoughts"? I think it would be difficult to get a seat on. You know it would be full of ideas though!
I also received regular phone calls from the RN and my specialty pharmacy during treatment. I know others that have mentioned timely contact by their healthcare team, but that doesn't occur as often as it could. Some practices are more patient care focused than others and I think that comes down to the people in charge and the staffing complement. Take advantage of their time by jotting down questions ahead of time. As previously discussed, that's exactly when those annoying mental disconnects occur!
If you would like to start a new thread in the On Treatment section, feel free. Once introduced here in the New Members area and treatment has commenced, there are threads there to continue the discussion.
I had composed a long post when, nearing completion I punched the wrong key and the text disappeared. I recall vaguely that it was wonderfully witty but now this rewrite will hafta suffice.
Yes Tig, I've ended conversations abruptly when I've forgotten the subject, or even who I'm talking to. I haven't formed or held an abstract thought for over a month...Area of a circle? forget about it.
Sometime in my brain I know there's a thought, but there's a disconnect before it reaches my tongue.
It's occurs to me that the pill isn't making me dumb.
It may actually be making me smart enough to realize I wasn't that bright to begin with.
I'm kinda enjoying some of this knowing there's gonna be a happy ending.
I received a phone call today (my third) from an RN working for the dispensing pharmacy checking in with me, how are my sides? was I disciplined and timely in taking my meds and yes Tig, was I staying hydrated?? I thanked her for disregarding my earlier request that I not be contacted because I now like talking about this with people inside the tent so to speak... I assured her that I knew the difference between fatigue and the fog...the fog is real and should have a more prominent place in the official directions...Anyway, I was impressed with the follow up and TLC non-the-less...Is this diligence because Epclusa is so new they're still gathering field reports??
Canuck...Yes, amidst the flurry of initial blood tests I had a liver (actually maybe all my guts) ultrasound and heard the words enlarged and inflamed but not tumor so I, perhaps self-disillusionally let it slide...I meet with my gastro guy next week and I'll broach it..
My wife hasn't taken the car keys yet but I've heard from the passenger seat "are you ok?" or "thank goodness this is a straight road"..
It's all pretty good in my world.
thanks for being here guys
Tig, are you mimicking me, walking from room to room like that!
Upstate, just for comparative notes, my mental acuity, or rather, very much the lack of, was never more at it's height, than when I was on treatment. Now mind you, I was on epclusa and another 3/4a drug callled VOX (on a trial), so I have no idea what really contributed so much to my deep brain-fart fugue state, (I was very fatigued and not the brightest crayon in the box prior to treatment, or ever), but I tell ya brother, during treatment it was thick, super-thick, my partner took the car keys away from me for a while, and I was glad he did! No snappy synaptic firing going on between my ears for quite a while, felt like tar-baby with my brain matter stuck fast in a sludge quagmire. Oh, the relief when it started to lift. Akin to the first bits of relief one feels getting started on treatment knowing you have obtained the best drugs possible to do the deed to wipe out this virus, and akin to getting that first confirmation of your 4 week VL crash. Nice when the fog starts to fleet, relief from those kinds of things just takes time, and everybody seems different. I am still steadily improving (in many, many ways) over a year later. Things do improve. Water intake was very vital in helping me with any sides while on treatment.
Coddle yourself, remove challenges and stressors as you can, and try to ride the therapy out as patiently and gently as you can with good diet, rest, fluids.
I like your way with words BTW!
Just ask anyone around here, ... do I pry? - if you don't mind sharing, what Fscore tests and results have you had done, did you have biopsies, fibroscans? Any ultrasound imagings. What kinda shape is (was) your liver in, aside from being well on it's way now to being cured of this infection. C.
Good to hear from you again! The brain fog can be debilitating, not to mention embarrassing sometimes. I can't remember (duh) how many times I went completely blank. I would move from room to room and realize I was standing there looking lost. I was lost, I had no idea what I was doing. That would happen in discussions with people on the phone, in person, anywhere it seemed. I assure you that once I killed this beast, my brain activity improved. Now I just blame it on my age, it really can work in our favor sometimes, ha, ha! I wonder, how many people in years/decades gone by, were afflicted with this disease and this issue? What many considered a cognitive problem, may have been Hep C related. Never know I guess, but we can assume anyway...
Have you kept up with your hydration? Keep on it and you'll be looking at all this in your rearview mirror in no time!
When diagnosed I really didn't have much of an idea what Hep c was, so I needed some pretty rudimentary stuff, which I got from you all. While my doc prolly explained it all to me, it stuck better after the shock had worn off, and was more meaningful when I could read and ponder info from people in the same boat as me...closer to my own perspective...
And, its interesting to learn that we are in the golden age of Hep c treatments, and I'm here, just in time, to reap the benefits. I seemingly, had no trouble securing the epclusa prescription, it was timely anyway, and was able to start treatment very soon after Dx. I'm a lucky guy.
I was very relieved to read about the 'brain fog" that many people referenced as I had no context for my own loss of mental acuity...and emotional sensitivity. Once I realized I was sharing this same Sx with others, I became perfectly content to ride the thing out..and I am...I even find it kinduv amusing looking at it from a third person POV. Anyway, the world can prolly use a little more sensitivity.
Because I got this brain fog thing in spades, but realize I can handle it, I'd be happy to avail myself to anyone who might need reassurance as to the benefits of being dumb, sensitive and cured...
Thanks again for sharing in my progress...
Talk about coming out with a bang, that was a heck of an intro! YAY and welcome upstate.
Welcome,
I too observed for a long while before joining up...hence my choice of name
Congratulations on your fabulous numbers!
I hope your treatment is being side effect-free because of all the water you are drinking everyday.
A
Very glad to meet ya upstate, and very glad to hear your good news! Another fellow epclusian cured. Welcome to Club Zero, big congrats on your first UND, and those are beau-ti-ful Alt and AST's now too!
Nice you have been peeking in and that you found it helped. I did that too, quietly peeking in and poking about for a while, but now they can't get rid of me nor shut me up!
I am very glad to hear of every person who is getting epclusa, it is always a good news day!
Good signature line you did up BTW. Do share, if you wish, how all has been going for you. We would be all ears. Admin and moderators are great for info and questions.
Wonderful, your first UND! C.
Wow more good news!
Welcome here and make yourself at home.
UND !
Well, you may not know me, but I know you all, and I wanna thank you for the information and attitude that's helped me through the last 6 weeks as I've peeked inside your forum...
You guys educated me, eased my mind and answered questions I didn't know enough to ask...
Got good news today on my 4 week bloods so I came outta the closet...
Thanks for the awareness..
Thanks to all...
Peace..