Hepatitis Forums
Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: Bree on October 12, 2015, 11:29:26 pm
-
So here I am, posting under Post Treatment for the first time!!! That, in and of itself, seems miraculous to me. This is the first forum of any kind I have ever been motivated enough to participate in and have learned so much.
My intention for this thread is to talk about the good stuff post treatment. While I have some things that can be considered symptoms post treatment, this and that, this and that, the good outweighs the negative by such a huge margin that that's where I want to spend my energy.
I'm two weeks post and feel better every day. I'm walking, and just enjoying life more. I talked to an old man outside of home depot about my dogs (who were with me) and his rescue animals for a half an hour. I'm letting the small stuff go.
"Smelling the roses" as they say. I'm grateful. Plain and simple.
I want to live in the moment and not waiting until the next blood work test result before I decide I'm o.k. to start living. It's easy for me to say, I was Not Detected at 4 weeks on treatment and one week after treatment. There's still a ways to go until I can use the "cured" word officially. But I'm using it anyway (privately to myself).
I appreciate my friends and also this forum for holding the space for me to believe I am cured. They encouraged me when I was scared due to a symptom here and there. I tell my friends often how appreciative I am. I appreciate my internist who told me about Harvoni. And Support Path, who assisted me to get treatment. And, I am telling you. I appreciate you. Thank you for encouraging me and believing for me during the worried parts and the wonderful parts!
My hunch is this is going to get better and better and better. It's like a whole new world just opened up for me. Let the sunshine in!
-
SO HERE YOU Are Bre, THANKYOU FOR your post,what you felt when you posted that was a gift. I love those moments and the gift it always brings. I'm sure dogs( your buddy's) were enjoying the groove too.You should write that whole post down and carry it with you in whatever belongings you tote around and when situations in life of dysfunction pop up GO to a space where you can reflect on it.I don't think you could ever go wrong with that thought.Thanks for sharing that. so....... there you were and now,here we are, May we never forget where we come from,and may we always share. "Just Willie g " GATORFALLS
-
SO HERE YOU Are Bre, THANKYOU FOR your post,what you felt when you posted that was a gift. I love those moments and the gift it always brings. I'm sure dogs( your buddy's) were enjoying the groove too.You should write that whole post down and carry it with you in whatever belongings you tote around and when situations in life of dysfunction pop up GO to a space where you can reflect on it.I don't think you could ever go wrong with that thought.Thanks for sharing that. so....... there you were and now,here we are, May we never forget where we come from,and may we always share. "Just Willie g " GATORFALLS
Thanks Willie for the welcome on the post side of treatment. I really do feel that way... still!
-
I'm almost 3 weeks post treatment and it's hard to believe. This past 4 months (on treatment and then post) have kind of been a blur. A good blur (most of the time) with strange things mixed in.
I've been so busy these past few weeks, I feel like I'm living life. More so than in a long time. And differently. More alive. More awake. More everything good.
The first week post was strange, felt really weird, I was sick, thought is was a flu as others around me were sick, but when I see others post symptoms I think it was a combo.
The light-headedness is gone, fever gone, aches and pains (still some but had some before)... much better though. I know I've been lucky with this treatment.
I'm grateful.
-
Hi Bree. Thanks for starting this thread! I will be 12 weeks post-tx in a couple of days, and will be getting my labs done to confirm I am cured. But it sure feels like it. :)
I am so glad you have mentioned feelings of gratitude here and on other threads. It is so easy for us to focus on the immediate and short-term problems resulting from treatment or post-treatment that we lose sight of the Big Picture, which is that this is nothing short of a MIRACLE! I had Hep C for 45 years and never thought I would see the cure developed in my lifetime.
In Five Element Theory, which is the underpinning of Traditional Chinese Medicine, each of the five major organs in our body has its own virtue and also its own particular negative emotion that manifests when the organ's energy is weak, stagnant, blocked. The liver's virtue is kindness, compassion, generosity… But really at the bottom of that is gratitude, because that is what enables kindness and compassion and generosity to manifest.
The liver's negative emotion is anger, jealousy, envy. In English we say "green with envy", and in 5-ET, the liver's color is green. So there may be a very ancient basis for that English expression. 5-ET is 2,500 years old.
I think part of the healing process at the level of deep energies in our body, involves investing in and cultivating gratitude, and consciously working to dispel anger or envy when it arises. I believe working on these things in a self-aware and mindful way will speed the healing of the liver.
best,
kim
-
Thank you Kim for acknowledging this thread!
I'm so happy that you are getting your 12 week post blood work. You have really been through it with the medical stuff post treatment and I'm so glad you are coming out the other side... and cured at that!!!
I appreciate your theory on the immune system re-adjusting itself. And thank you for posting the Chinese Medicine beliefs regarding the liver. I knew it was a seat of emotions (anger, etc.), but that was about as much as I knew. I also knew that it was effecting me emotionally (just couldn't explain it). No wonder I feel lighter!
Here's to unhooking from living the medical story and creating new patterns for living... it may take some time, but that's o.k. I have to stop and remember to be patient and gentle with myself along the path!
-
Hi Bree,
I'm so glad you started your thread of positivity. I knew you were he one to do it. You have an attitude that needs bottling and selling! I only hope to aspire to you. I'm afraid I'm a live from test to test type. I need the results to allow me to be happy. I know this is all wrong and mindfully, it does not take me to where I want to be happy and living in the moment. I see my mindfulness counsellor tomorrow, I am so much more open to thinking that way now. Kim, thank you for your TCM explanation. I think my liver has held me back from truly being happy. I suffered awful depression last year and it had lifted enormously as the virus lifts. Which makes sense.
I can still be happy with partial health. I am still a worthwhile human being. Thanks Bree. Cal :)
-
Thank you Cal! You are definitely a worthwhile human being!!! Your contribution on the forum means so much to me! :)
I had a challenging day yesterday. I was like, what happened to my pink cloud?
I overdid it and did too much this week. Negative stuff with my two supposedly adult sons. Tweaked my back. None of it really to do with treatment or post treatment (I don't think)... it's just that life is in session. I felt a little upset and tearful.
But in my heart I know I have a new bonus about my health and it's a good one! It's like a near death experience, it changes you and your point of view about what's important, so I know that I can keep on looking forward...
-
FREEBREE, don't sweat the small stuff!!! I am wishing that black cloud over to My thread where it belongs. To Much negativity & bad karma is marring Your beautiful happy place thread, Come to me little black cloud!!! I banish You from this thread for eternity!
There, that ought to do it! No more bad juju allowed here on this thread!!! I won't have it I tell You!!!!
-
Thank you Tommy for that... you are right. This is the thread of promise for a beautiful future. Caught being human... again! Back to Making the Most of Post Treatment (or MMPT for short)! 8)
-
Thank you Cal! You are definitely a worthwhile human being!!! Your contribution on the forum means so much to me! :)
I had a challenging day yesterday. I was like, what happened to my pink cloud?
I overdid it and did too much this week. Negative stuff with my two supposedly adult sons. Tweaked my back. None of it really to do with treatment or post treatment (I don't think)... it's just that life is in session. I felt a little upset and tearful.
But in my heart I know I have a new bonus about my health and it's a good one! It's like a near death experience, it changes you and your point of view about what's important, so I know that I can keep on looking forward...
Thanks Bree,
Yes sounds like you had a life hiccup, s*** happens as they say! Tearful times sound pretty normal. Resume quickly where you were. Yes it is like a near death experience. I totally agree. You have to seize it as a wake up reminder. Cal :)
-
Tommy,
I heard that word juju on a movie recently. What does it mean? Cal 8)
-
Thanks Bree,
Yes sounds like you had a life hiccup, s*** happens as they say! Tearful times sound pretty normal. Resume quickly where you were. Yes it is like a near death experience. I totally agree. You have to seize it as a wake up reminder. Cal :)
Yep, I'm back... took that detour this weekend, decided nah, I like the other road better!
Juju is kind of like vibes, or luck, or spirit... it will be interesting to see Tommy's definition. ha.
-
What a great thread! While we all struggle w/ the virus, life does indeed go on. Some days are worse than others, and vice versa. I have "joked" for so long about "keeping it between the ditches" that it's my go-to. Sometimes no news is good news, sometimes no news is bad news--- sometimes no news is just no news. I have learned that the no news being no news is actually preferable, acceptable-- as opposed to the anything else that is suddenly too big for me to handle. So yes, I am all for finding out what "MMPT" will mean to me. It certainly can't be as awful as the alternative....
-
Mary Jo,
She's great isn't she? She's been like this all along. I swear she'll end up being a motivational speaker or something!
We have to get through tx and then 12-24 weeks of waiting, we can do it hard, or easy, it's a choice. I need to choose everyday unfortunately. I am learning to have more hope than doom in my heart though. It's a process. Cal :)
-
Cal, Bad JuJu is all that crap that is in that little black cloud that follows Me around.
LOL!! Good JuJu is all that good , bright , shiny wonderful stuff that is in Brees' little pink cloud.
-
Yes, she is great! I tend to be a sand-filled sock type person-- always looking for and expecting the worst. I have to learn a different way now and these threads help.
-
Ahh gee, thanks guys. You have no idea how much that means to me at this moment.... And here I was feeling left out and isolated... (don't ask me why), it just swept me over. Like tearful for no reason.... what's up with that.
Cal, guess what! I am a motivational speaker (among other things)! ha.
(we have moments too)
Here's a great quote I found on FB: Definition of an Optimist:
Someone who figures that taking a step backward after taking a step forward is not a disaster, it's more like a Cha-Cha!!!
-
Bree, well it feels good to make it to the other side! I actually walked over to the medicine cabinet to take my medicine and then I remembered, wait.....I am finished..I am so used to my daily routine that I thought oh what the heck and took a couple vitamins instead. I was supposed to go get blood tests yesterday but a strange man just walked into my home in the middle of the night into my living room and I was on the phone with 911 and the police swarmed my house. Had no idea who he was but it scared the shit out of me and my children. Kind of screwed up the whole day because I couldn't go back to sleep....soooo, I shall be going this morning for my blood test.
Go Royals
Scout
-
Bree, well it feels good to make it to the other side! I actually walked over to the medicine cabinet to take my medicine and then I remembered, wait.....I am finished..I am so used to my daily routine that I thought oh what the heck and took a couple vitamins instead. I was supposed to go get blood tests yesterday but a strange man just walked into my home in the middle of the night into my living room and I was on the phone with 911 and the police swarmed my house. Had no idea who he was but it scared the shit out of me and my children. Kind of screwed up the whole day because I couldn't go back to sleep....soooo, I shall be going this morning for my blood test.
Go Royals
Scout
Scout, Welcome to the other side!!! It's good over here! I'm a happy camper. It took me a few days to not notice about 9 p.m. my regular pill time, then I forgot about it.
Whoa, Scout, that's quite an experience! That must have been really scary. Did he leave on his own or did they take him away? I can imagine that would mix up your day and night for sure. Good luck with your blood test!
I see my infectious disease specialist today... haven't seen him since 6 weeks on treatment so that's about 2 months since I'm 3 weeks post. He'll just go over blood work, which I have done for myself already. He's a no nonsense kind of guy.
-
. . . I was supposed to go get blood tests yesterday but a strange man just walked into my home in the middle of the night into my living room and I was on the phone with 911 and the police swarmed my house. Had no idea who he was but it scared the shit out of me and my children. Kind of screwed up the whole day because I couldn't go back to sleep....soooo, I shall be going this morning for my blood test.
OMG! Glad you waited an extra day to take your labs. I don't know whether Freeze-Flight-Fight stress affects liver enzymes, but it can't hurt to give your body extra time to settle back down.
-
Bree, yes the police took him away in handcuffs. I replaced all my door locks and window locks and added motion lights around my house. However, the front door wasn't locked. Uggggg, I went to bed early and none of the kids locked the door. I bet they do now! It's all good though. I was soo proud of them, no one freaked out and they remembered exactly what to do if something like this happens.
Go Royals
Scout
-
Tommy,
Aha , I don't like bad juju. I just realised what movie I heard it on. Silver linings play book. Great film. Cal :)
-
Mary jo,
I am too, but I am trying hard to change. We have too. We only get one bite at this cherry called life. I want to be a happy optimistic person again. I let hep steal that from me. Cal :)
-
Ahh gee, thanks guys. You have no idea how much that means to me at this moment.... And here I was feeling left out and isolated... (don't ask me why), it just swept me over. Like tearful for no reason.... what's up with that.
Cal, guess what! I am a motivational speaker (among other things)! ha.
(we have moments too)
Here's a great quote I found on FB: Definition of an Optimist:
Someone who figures that taking a step backward after taking a step forward is not a disaster, it's more like a Cha-Cha!!!
Bree,
I think being teary after all this emotional upheaval is very normal, as us feeling isolated etc. you're so normal!
Your are a motivational Speaker! OMG, HIW DID I OUCK THAT. Hilarious. Seriously I'd come and see you. The fares tomHawaii are really reasonable at the moment. I may be there as an SVR celebration yet! I'll come see you and you can give me a private motivational speak! Cal :)
-
That's meant to say "how did I'm pick that"
-
Bree, well it feels good to make it to the other side! I actually walked over to the medicine cabinet to take my medicine and then I remembered, wait.....I am finished..I am so used to my daily routine that I thought oh what the heck and took a couple vitamins instead. I was supposed to go get blood tests yesterday but a strange man just walked into my home in the middle of the night into my living room and I was on the phone with 911 and the police swarmed my house. Had no idea who he was but it scared the shit out of me and my children. Kind of screwed up the whole day because I couldn't go back to sleep....soooo, I shall be going this morning
Scout that's terrible! You poor thing! Are you ok? Did he break in? At least your UND...........hehe...keep on remembering that. Cal :)
-
Bree,
Good luck at the Specialist. He may give you some positive feedback, it's always nice to here good thing so from those kind if people. Cal :)
-
Hi Gnatty,
How's every little thing? Cal :)
-
Scout,
Great that you sorted the security. It's so easy to forget to lock up, with my kids coming and going at all hours, no one thinks of security other than me. What an experience to see a man taken off in handcuffs. How old are the kids. Mine are young men but I call them kids! Cal :)
-
Cal, my daughter is 17 and my son is 7....I had my son pretty late in life..I was 42 and my husband was 52. We were a little surprised that is for sure...LOL...
Scout
-
Scout,
What a beautiful surprise. Only 7yo? Is he scared by what happened? Cal
-
Cal, they are ok. We had always had a plan for if something like this were to happen and they followed it to a tee...he did ask if the bad man was going to take his toys,,,,ahhhhh to be innocent..they could see the police come get the guys from their hiding spot. It's all good.
Scout
-
Scout- wow, very creepy feeling of violation, and with kids in the house. Hope you are OK, those things challenge our sense of safety. Years ago I had a break in encounter that did not go well. A story for a different time and thread.
Cal- very funny..." at least she's undetected" hehe...cal you are a deck of cards.
Bree- Easy to imagine you as a moto speaker. Your sensitivity is apparent and you wear your heart and mind on your sleeve in the spirit of good communication. Thanks for you words and for this thread that I only today discovered.
In my case, the positives are creeping in... but the gratefulness has been a constant. Allowing that part of ourselves into our lives again is a matter of getting re-acquainted with self. As we lift the veil we can be flooded with emotions. The good ones are reminders of our potentials... the tough love emotions keep us honest.
-
Bree - I've been away, and just saw your post. What a gift! Thank you for doing this. It is brilliant!
-
After a busy few days, I'm just catching up with my thread! My heart is singing from what you all have written!
The truth is I need this forum as a touchstone... not for symptoms (maybe sometimes)... but to navigate living a complete, full and joyful life post treatment. I feel like the promise of a beautiful life is worth pursuing.
Scout, didn't you know, being UND gives you superpowers against intruders :)
Beto, Mahalo for your kind words and your thoughtful responses.
Cal, you are a really cool person... love your vibe!
(Specialist was his usual self, I guess it's me who needs to change my expectation). Ha.
Lucinda, thank you! I read a post somewhere where you are asking, what about the good side effects? I was feeling the exact same way. I want to share the good stuff and encourage more people to seek a cure and not be afraid, or be afraid and do it anyway!
-
I heard this from a guy down at the beach this morning (yep, that's how I started my day).... he said:
"If I am not in awe I am not paying attention!"
Couldn't agree more...
-
I just nabbed that quote and I am putting it on my FB page. Beautiful!!
-
I just nabbed that quote and I am putting it on my FB page. Beautiful!!
That's great Lucinda! I sometimes say "I'm in shock and awe" or "I'm awestruck every day" (easy to say where I live)... but this quote is a reminder to choose what I'm paying attention to.
-
Hi scout,
Glad you and the kids had a plan for a contingency like this. In Australia we don't think of things like that, but it's starting to get that way. Dear little one about bad man taking the toys! Cal :)
-
After a busy few days, I'm just catching up with my thread! My heart is singing from what you all have written!
The truth is I need this forum as a touchstone... not for symptoms (maybe sometimes)... but to navigate living a complete, full and joyful life post treatment. I feel like the promise of a beautiful life is worth pursuing.
Scout, didn't you know, being UND gives you superpowers against intruders :)
:) :)
Beto, Mahalo for your kind words and your thoughtful responses.
Cal, you are a really cool person... love your vibe!
(Specialist was his usual self, I guess it's me who needs to change my expectation). Ha.
Lucinda, thank you! I read a post somewhere where you are asking, what about the good side effects? I was feeling the exact same way. I want to share the good stuff and encourage more people to seek a cure and not be afraid, or be afraid and do it anyway!
Oh dear Bree
We need you and this thread as much as you need us. You are beautiful. Cal :)
-
I heard this from a guy down at the beach this morning (yep, that's how I started my day).... he said:
"If I am not in awe I am not paying attention!"
Couldn't agree more...
brilliant and accurate quote. Cal :)
-
Oh dear Bree
We need you and this thread as much as you need us. You are beautiful. Cal :)
Cal, YOU are beautiful!!!
-
Is it my imagination or is there more estrogen on this forum than testosterone. Seriously, I wonder what the ratio is. Women tend to communicate better. I guess that would be a question for Lucinda. I also would be curious as to the hepatitis general numbers M to F.
BTW, this question has nothing to do with Bree and Cals heartfelt exchange...But it did have me looking for a hanky :) :) :)
-
I don't know the answer to the male vs female ratio, but I do know that this forum seems to have a lot of wisdom regardless of chromosomes. I learn a lot here, mostly about how to be a kinder human being.
-
hey all,
I could not start a new topic for this...if I am out of line here, its OK to be mad at me. But, anyway I had been wondering how much time I have spent on this forum and I figured quite a bit. I looked it up and I have spent a; Day, 21 hrs and 1 minute at this since maybe end of June. I have posted 161 times and started 3 topics. So I then wondered how I stacked up against y'all. Well... :)this is in the spirit of the fact we find the support almost addictive. We spend a bunch of time with one another...just sayin'... so below are the top ten posters by quantity of posts...sorry for the highjack, I could not help myself.
Lynn K 1,556 lporterrn 1,272 Mike 922 KimInTheForest 877 BattleTheBeast 807 Katie 731 Cal 603 dragonslayer 541 Philadelphia 477 sunrise 458
Cool huh? There are all kinds of stats. I need a new hobby :)
-
You are good here Beto. This is the thread that welcomes all!
Question: The time you spent... is that where it shows how much time logged in?
For me it's 3 days, 37 minutes (I knew I wasn't getting my work done!).
-
Yes, if you string all the time you spent posting and reading posts together, it comes out to the three days and change. You are a busy buckeroo.
-
Yes, if you string all the time you spent posting and reading posts together, it comes out to the three days and change. You are a busy buckeroo.
Totally worth the investment....Support and education received, and friends made: Priceless!!! 8)
-
Crikey,
I'll come clean, I need the support and I get it. Thank you everyone :-* Cal
-
Holy cow Cal, I absolutely cannot stop eating since I need treatment! I didn't eat much during treatment, but man I am making up for it now..everything just tastes so good. I lost about 10 lbs during treatment, and pretty sure I have gained 8 back since last Sunday,,,feeling good though. I have my end of treatment with doc on Tuesday...gonna have to give a good report of my experience taking Harvoni....now where is that ice cream!
Scout
-
:o well I just stopped by,supercalifragilisexpeealidochous, no sleep of any great lengths this past few days ,took off for the woods thinking that would help. no whyfi where I go,, what a different world,,, whyfyin it,versus no whyfyin, people vs. no people, before I did this treatment I was constantly trying to get away and heck most of the time it was great,i always thought getting away was the whipcream on top of the cake,, now I seem to be eating all the cake first and leaving the frosting behind,is that age? , or post treatment signs? signs of what? also no more of those nasty pickles on McDonald's cheeseburgers,,, what the hell,,i got into an argument once because they didn't put the pickles on,,,SO,,, am I to expect more of these weird little trails off the little trails I was already on and the big question is when I get done taking all those new extra trails will I, 'yes,will I get to start all over again and because of all the great ,needed, support I have finally seen I have received will I JUST WILLIE be starting in a much kinder softer place than where I started before??/ I am sure you ALL know what I mean[ya RIGHT I gotta,better chance of 100 dollar bills coming out of the sky as we go off to work or whatever on Monday] but we all must admit the real deal support you get from REAL DEAL situations is a glorious thing and I will be honest with you ,a year and a half a go or so I didn't even know how to use a word such as GLORIOUS [I still have to use spell check though ha he]let alone really even caring about it] em mm should I post? shouldn't I post?Emma them darn woods can sure do something to ones imagination as well as tester on, estrogon constDA paTION,, to sum it up this has been a good page with lots of 'THE REAL DEAL''[if I am not in awe,[its tough remembering things like this for me]then I am not paying attention, 10 times I've said it and lets hope tomorrow when I spring it on my dog I don't screw it up Lol so BETO!! SURVEY SAYS!? ''JUST willie g GatorFalls are we blessed or what?
-
And the answer is...blessed
peace
-
WAY TO GO BETO! keep up the good work! ''just willie g''
-
One word: AWE!!! :) :) :)
-
Scout,
I've got the same problem at about 8 weeks I got my appetite back and ate like a proverbial. Now have put back on all the weight I lost. Now I have to Stop! Cal
-
Scout,
I've got the same problem at about 8 weeks I got my appetite back and ate like a proverbial. Now have put back on all the weight I lost. Now I have to Stop! Cal
I've been baking and eating shortbread cookies non-stop for the last few weeks, since recovering from my post-tx mystery malaise and major appetite suppression during tx. I just crave them ferociously. The sugar is minimal because I cut it way back from what the recipe calls for. But there's a tablespoon of butter in each one… They're quite tasty! ;)
kim
-
Wow,
We'll all be on a weight watchers forum next! Cal :-\
-
I've been baking and eating shortbread cookies non-stop for the last few weeks, since recovering from my post-tx mystery malaise and major appetite suppression during tx. I just crave them ferociously. The sugar is minimal because I cut it way back from what the recipe calls for. But there's a tablespoon of butter in each one… They're quite tasty! ;)
kim
Now that's what I call making the most of the post treatment (MMPT)! 8)
-
Man, You guys are making Me hungry!!!!!LOL!! This weekend I made a big pot of Jambalaya with two kinds of sausage, chicken, and shrimp. It was so good that when I went back for the leftovers, none was left. BTW, the kids love it when I cook, don't tell My wife though!!!!
-
OK Tommy,
What the hell is Jambalaya????? :o :-[ Cal
-
It's a spicy rice based Cajun/Creole staple dish that You can use just about any meat. poultry, seafood or a mixture of all of them to. It feeds a lot of people for a little money. on top of that it tastes great. It's kind of like when I make soup. Any meat in the freezer is going in it , any and all veggies I can get My hands on, any odd canned goods in the pantry , rice , pasta, beans---- You name it & I'll make something with it!!! Oh Yea, I like it SPICY too.
-
been reading the various posts on this forum....will soon do my post treatment blood work to determine if I have cleared the virus.
Probably got infected late 60's
genotype 1b
IL28B CT genotype
did pegolate inferno/ribivian treatment, 48 wks. (excused spelling)
cleared but 6 months later, virus came roaring back. This was early 2000's
My AST/ALT levels have vary over the years.
Biposy needle, show fibrosis, normally mild
Ultrasound, several by now, show some increase in fibrosis
VL has been all over the map:
12/10/2002: <10
04/09/2003: 22,500,000 (this was during initial treatment)
05/16/2004: 58,900,000 (HCV RNA Qn IU/mL)
07/14/2005: >2,000,000
03/24/2015: 124610 IU/mL or 5.096 HCV Log10
Blood test to determine fibrosis came back not able to calculate.
Will provide results of treatment in 3 weeks.
-
been reading the various posts on this forum....will soon do my post treatment blood work to determine if I have cleared the virus.
Probably got infected late 60's
genotype 1b
IL28B CT genotype
did pegolate inferno/ribivian treatment, 48 wks. (excused spelling)
cleared but 6 months later, virus came roaring back. This was early 2000's
My AST/ALT levels have vary over the years.
Biposy needle, show fibrosis, normally mild
Ultrasound, several by now, show some increase in fibrosis
VL has been all over the map:
12/10/2002: <10
04/09/2003: 22,500,000 (this was during initial treatment)
05/16/2004: 58,900,000 (HCV RNA Qn IU/mL)
07/14/2005: >2,000,000
03/24/2015: 124610 IU/mL or 5.096 HCV Log10
Blood test to determine fibrosis came back not able to calculate.
Will provide results of treatment in 3 weeks.
Welcome rt2cup!!! What treatment did you do this time?
-
It's a spicy rice based Cajun/Creole staple dish that You can use just about any meat. poultry, seafood or a mixture of all of them to. It feeds a lot of people for a little money. on top of that it tastes great. It's kind of like when I make soup. Any meat in the freezer is going in it , any and all veggies I can get My hands on, any odd canned goods in the pantry , rice , pasta, beans---- You name it & I'll make something with it!!! Oh Yea, I like it SPICY too.
thanks Tommy,
Sounds yummy. That's how I cook too. I hate cooking personally, so my poor family have a repertoire if about 7 meals. I cook what I remember and what's in the fridge. They've survived! Cal :)
-
Hi RT2cup,
Are these your end if treatment bloods it 12 week post tx bloods? Good luck. Cal :)
-
harvoni 12 weeks finished pills in mid-August
I will go clinic for blood work first week of November and visit my doctor November 11th.
I will post results shortly thereafter for the forum.
-
rt2cup,
Yes please keep us posted. Cal :)
-
harvoni 12 weeks finished pills in mid-August
I will go clinic for blood work first week of November and visit my doctor November 11th.
I will post results shortly thereafter for the forum.
Sounds great rt2cup, we'll be awaiting your great news!
-
Wow... I've been pretty scarce on the forum lately... I do check in here and there.
I've been doing my best to live life, whatever it brings, during this post time.
I'm also doing my best not to give too much power to misc. perceived symptoms, little aches in the liver, etc. All blood work is good except low platelets (88), lower that normal, which is strange. My docs don't seem alarmed so I won't be either.
I was UND at 6 weeks post, a very, very good sign. That helped to relieve tensions around this post period time. I'm going Monday for my 12 weeks post. Kind of exciting I think... it's amazing how much awareness we have around that benchmark blood tests. I feel like it's gone... I'm not peak every minute of every day, but I just feel like it's gone.
There's a whole slew of us post treatment that are coming up on 12 week post as we finished within about a week of each other. I feel a bond with you all... I'm still hoping we might make that documentary in Hawaii in 2016.
We have a writer and film person in our mix too!!! Love, Bree
-
Rock on Bree,
Headed down to get my 12 this week too...a few days shy of the mark. Just wondering, is 12 weeks still the gold standard? So many folks are looking at 24 now. I just want to be done already. It's gonna go great for us this week. Wish i could get the results before xmas. peace
-
My 12 week EOT test is Jan 11....so I am right behind you guys! I have a feeling it's gonna be a good year for us all!
Scout
-
I feel a bond with you all... I'm still hoping we might make that documentary in Hawaii in 2016.
We have a writer and film person in our mix too!!! Love, Bree
Let's rock that Hawaii filmmaking party in 2016! Shades on. 8)
kim
-
Rock on Bree,
Headed down to get my 12 this week too...a few days shy of the mark. Just wondering, is 12 weeks still the gold standard? So many folks are looking at 24 now. I just want to be done already. It's gonna go great for us this week. Wish i could get the results before xmas. peace
Hey Beto, Yes, I was going to have my blood work a bit early for Christmas but didn't work out that way. I figure I'll have the LFT back before and if they are normal, it's a pretty good indicator. Expecting the best...
I called and spoke with the nurse at Gilead Support Path and they are calling 12 week "Cured". I think it was 24, and now 12 is considered cured. 24 week is money in the bank! (My doc still goes by 24, I had to insist on 12, but I study stuff more than he does;) 8) YEA US!!!!
-
My 12 week EOT test is Jan 11....so I am right behind you guys! I have a feeling it's gonna be a good year for us all!
Scout
Hey Scout, that will be a good start to the NEW YEAR. I read on another post all the things you have gone through and I could hear your empowerment behind it all. Good for you... reminds me of me;) Great to hear from you!
-
Let's rock that Hawaii filmmaking party in 2016! Shades on. 8)
kim
Agree!!! Shades on!!! I'm serious yall... we can do this! 8)
-
Bree, I decided that this was the year of "me" got rid of some luggage, went to the doc and got put on Harvoni, went through the treatment and 2016 is my starting over point and I am ready
Scout
-
Bree, I decided that this was the year of "me" got rid of some luggage, went to the doc and got put on Harvoni, went through the treatment and 2016 is my starting over point and I am ready
Scout
I hear you Scout, I hear you!!! I'm ready too for some awesome new beginnings!
-
rt2cup,
Yes please keep us posted. Cal :)
I have posted results of post-12 weeks of treatment, must be on another thread. I had good news, my viral load is undetected. As in other posts, virus undetected during treatment and now undetected 12 weeks after end of treatment.
I have requested a 24 week follow-up to insure the viral load is undetected. One of my liver markers is still out of range. I assume if the virus is gone both AST and ATL will be within the normal range at the 24 week mark unless something else is going on.
So it looks like I have cleared the virus.
-
Please update your profile signature, so we dont need to ask gentype, viral load etc. etc. :)
-
I have posted results of post-12 weeks of treatment, must be on another thread. I had good news, my viral load is undetected. As in other posts, virus undetected during treatment and now undetected 12 weeks after end of treatment.
I have requested a 24 week follow-up to insure the viral load is undetected. One of my liver markers is still out of range. I assume if the virus is gone both AST and ATL will be within the normal range at the 24 week mark unless something else is going on.
So it looks like I have cleared the virus.
rt2cup, Congratulations and thanks for letting us know!!!! That's awesome news!!! Bree
-
I have posted results of post-12 weeks of treatment, must be on another thread. I had good news, my viral load is undetected. As in other posts, virus undetected during treatment and now undetected 12 weeks after end of treatment.
I have requested a 24 week follow-up to insure the viral load is undetected. One of my liver markers is still out of range. I assume if the virus is gone both AST and ATL will be within the normal range at the 24 week mark unless something else is going on.
So it looks like I have cleared the virus.
Big congratulations! You did it. I am UND still 1 week post EOT but my ALP has been steadily rising during tx. I am to have a scan for gall stones. Always something as HCV is the gift that keeps on giving. But good on you! Cal :)
-
Hey Bree!!,
So I am jumping the gun and getting blood work done 5 days premature of the exact date of eot12. I know it is splitting hairs to wonder if 11 weeks and two days = 12 weeks. We get so particular over anything that has to do with treatment protocols.
What's five days right? Thing is...I wonder is this really any more meaningful than the 6 week test when push comes to shove. Whats everyone else think...I'm going in just a few hours.
-
Beto, I'm at lab now! 7:30 a.m. as plane with blood work leaves at 8:30...I think 11 or 12 weeks about the same! Yea for us!!!
-
Done...labs have my blood, no turning back...gives me the heebie-jeebies. On winter solstice. My blood looked thick and dark red. Hoping for a zero vl christmas.
-
How do you go from Cirrhosis to non damaged liver?
-
Hi Dragonslayerinprogress
First up you need to stop hep c and the liver damage it is causing. Are you currently on treatment and seeing a liver specialist like a hepatologist or gastroenterologist?
Unfortunately there is no magic bullet for curing liver cirrhosis. Cirrhosis means our livers are heavily scarred and damaged. Previously it has been said cirrhosis is incurable.
But newer studies are saying with cure of hep c those of us with cirrhosis may begin to see improvement in our livers over many year with proper care and being kind to our livers by maintaining proper weight and heating a healthy diet.
The good news it that with cure of hep c our livers won't continue to be damaged and get worse which could eventually leading to liver failure. Plus being at elevated risk for liver cancer HCC.
At minimum our livers won't get any worse and may improve with time and our risk of HCC drops but we will still be at risk for HCC . We will need to have abdominal ultrasounds and AFP blood test every 6 months to monitor for possible liver cancer likely for the rest of our lives.
With cure of hep c we likely will live a normal life span even with having liver cirrhosis.
Good luck
Lynn
-
How do you go from Cirrhosis to non damaged liver?
Hi D-Slayer, tell us about you....
And welcome!
-
Done...labs have my blood, no turning back...gives me the heebie-jeebies. On winter solstice. My blood looked thick and dark red. Hoping for a zero vl christmas.
Hey Beto, We did it! After blood test, I went and got two crowns and a myriad of things in between. What a day... I'll get my LFT's back tomorrow, should be a good indicator. Due to holidays and the fact that HCV test is flown to mainland, not sure when I'll get it back...usually takes about 5 days. I'm so busy I haven't had time to obsess about it. I hope we hear back on the same day! And, of course, it's UND!!!
I know Drummerman finished same day as me... but don't know where she is... haven't seen her on the forum...
-
Can't wait to hear how you guys go!!
-
Thanks Philly! Good luck on your trip. Take pics and post if you can. Come to Arizona too :)
Bree- Gnatty was two days ahead of me begining TX I believe. She is likely closer to you in starting. Chime in Gnatty!! We are like the Christmas babies...wish I wasn't so much of a Scrooge...hehe..Crowns hurt the pocket book more than the mouth. I have had my fill of dental work over the past 25 years. Which coincides with the chronic manifest of HCV. I have read quite a bit over the years about links with dental issues and HCV/liver challenges. I will probably start a thread on it at some point. SVR Ho!!!!!!
Dragonslayerinprogress-
As Lynn has succinctly mentioned, cirrhosis is manageable even when fairly advanced and will most likely not get worse after SVR and could improve over time. I will say that the wisdom of yesteryear is being altered and many improve and it would appear, some dramatically.
I don't know if my own numbers are what prompted your question. If so, please let me respond. 1st, I have been researching cirrhosis and fibrosis reversal since I was diagnosed back in June weeks before I started treatment. It was the cirhosis stamp (F-4/liver stiffness 14.5) that helped me to get approved by my carrier. This was based on a liver scan, however, I must also add that roughly 17 years ago a biopsy indicated a score of F-2.
Early in my treatment, I began posting studies that clearly indicated fibrosis improvement even in cases of moderate to slightly advanced cirrhosis, when the cause of the damage was arrested (HCV/Alcohol, etc.). These were 'studies' so I took them, as well as a hand full of posts that showed almost unbelievable remission from advanced fibrosis, with a grain of salt. About five months after the June scan; by chance I was invited to see if I qualify for a study that ironically was testing a nutraceutical for possible reversal of fibrosis (FDA approved). I would get a free scan out of the deal.
I did not qualify for the study because my liver stiffness score was under the minimum (7.0) and showed 6.1. Naturally I did not believe it. The technition who has performed hundreds of scans told me it was common to see improvement after tx and admitted that my case was dramatic. This lead me to study the effectiveness of liver scans and I produced and posted a few efficacy studies that indicated the scans were approaching the gold standard because they give readings of large portions of the liver than biopsy.
Truthfully I almost didn't post because, I feared the tests might have been flawed, or that I might get the hopes of others up that don't have the same improvement. I also had, as Gnatty pointed out, survivor guilt. I even contacted a prominent moderator before mentioning it on a post...I was encouraged to go ahead,but that I should tell the whole story under "my story".
It turns out I am not alone and there are others reporting fantastic improvement. There are also many studies underway that will reveal this phenomenon in a clinical setting. So for some, the wait may not be that long after all...time will tell. It is encouraging to say the least.
Could my tests have been flawed? Of course. I will be doing another in about 2 months. I also have not reached SVR yet, so a let down now would be a big fall. The wisdom of the Wright Brothers era claimed heavier than air flight was impossible. Was there a law of attraction element here as was pointed out to me...I don't know. Alls I know is that I am hopeful and will take a wait and see approach to my future. peace
-
Gnatty here, chiming in as requested. Tomorrow is exactly 12 weeks after I took the last orange diamond, so tomorrow is when I'll provide blood for AFP, BASI2, CBCD1, HCVP3, and HEPFP tests. I'd be surprised if results are back before next week.
As for crowns, I have two that are 43 years old and two others that are a few years younger, but they had nothing to do with my liver. In my case, four "deciduous teeth" (baby teeth with no adult teeth to take their place) had to be replaced with crowns or else all the $$$$ for orthodontia would have gone down the drain.
But where HCV may have affected my teeth was in plaque production. Despite conscientious oral hygiene, in recent years my body had become quite the plaque factory, and the stuff would calcify with amazing rapidity. When I see my dentist in mid-January, I'll find out if it's only in my imagination that, post-Tx, there is less plaque, and what there is is much less cement-like. Anyone else notice that?
Gnatty
-
Beto, nice comprehensive well versed response regarding potential liver recovery.
Gnatty, yea, you can celebrate with us!!!
I got my LFT's back.... all in normal range. AST 28 (upper end of range and has risen a few points but still in normal range) and ALT 19. Platelets almost up to normal range (144). So, I'm thinking this looks good for an UND result. Yep, going with that. I'm grateful I have quite a few distractions at the moment.
Crown dental thing went well. I have a dental insurance and moved to a new insurance next year and had $1000 I could use before end of year and 2 teeth on the "watch list"... glad I went and did it, I had an awareness of these two teeth, almost a tooth ache... when he went in there the fillings were leaking and decaying underneath, so hopefully avoided root canals in the future. I'm feeling kind of punky today... I'm so sensitive to invasive medical treatments... or anything invasive to my body.
Yes, I have noticed more plaque in recent years too besides better dental hygiene. Thought it was an age thing. Probably a combo of factors. The dentist was talking about new studies for inflammation of gums and connections to breast cancer. To myself, I was thinking I'm so happy that I have decreased liver inflammation and how inflammation impacts overall health. Another cool reason to be ride of HepC.... there are so many... maybe I'll start a thread.... (top 100 reasons to get cured from Hep C!). 8)
Let's have a great day forum friends! :)
-
Bree, glad your dental work went well and, after you get over the punkiness, you'll be rid of the almost toothache. A great sign that your liver enzymes are normal and you have more platelets.
These last three days I've been doing heavy work around the house, the kind that would knock me out pre-Harvoni but was almost effortless in late September thanks to the Harvoni High. Well, I'm knocked out again. Santa, how about bringing me some more orange diamonds? My liver may not need them, but I do!
May 2016 be kind to us all.
Gnatty
-
I do miss the Harvoni High!!! I love Harvoni for many reasons. I still have more energy than before treatment and don't have to plan my down time like I did before... although it is still a pattern and mental habit to some extent. Hard to tell between liver disease and age what's what. I guess listening to our bodies is still the key.
-
It's funny you guys say that about the Harvoni...I wouldn't mind taking the treatment again.LOL......Hope everyone has a Merry Christmas and a very very normal New Year!
Scout
-
Good luck to everyone having their ETO 12 week bloods. Wow! All at Christmas time. Happy Christmas everyone! Cal :)
-
Every once in awhile I get Harvoni flashbacks :). Thanks Cal...I couldn't wait until my exact time for bloods. My results usually come pretty quick,though I expect xmas will delay them. Everybody by now knows the drill...no matter how positive you are, you can't help anticipating. The 12 week is a little scarier than the others because we have come so far and so much emphasis is put on the 12 mark. Long way down from that height.
Anyway, anyone on the recovery road has a Christmas gift. It could be getting approved for the meds, perhaps finding out for the first time that there is a cure, 4 weeks tx...or, maybe 1 year EOT. Wherever you are in this mas healing, Merry Christmas, Happy Haunnikka, Sublime Solstice, Happy everything and a bright and healthy 2016 to you!!
-
Hey all...got my labs already. Amazing how fast.What's more amazing is the fact that...drum roll please...Undetected!!! 12EOT (actual 11.3 weeks) alt/ast 19/21.
yipeeeeeee!!!
Small caveat is that my serum protein is high and Albumin high normal. That is a small blemish I know. But old worry wart Beto, right? I hope it is just dehydration which is possible because I am on ACE inhibitors and BP diuretics...and drink too much coffee...
Great Christmas present...I guess this is SVR right? Wow...
-
That's great news, Beto! Congrats on your SVR12! And just in time for Christmas :)
kim
-
Yea Beto!!! That was fast! SVR, love the sound of that... congrats and live your life to the fullest!!! 8)
-
Lovely numbers, beto -- congratulations!
-
@gnat you should be gettings your soon too. Congrats Beto :)
-
Excellent, GOD BLESS ! and Merry Christmas and a very healthy new year :)
-
thanks all...peace
-
Merry Freakin' HCV-Free Christmas, Beto! Enjoy the feeling. Enjoy the serenity. Tomorrow's going to be a great day.
http://youtu.be/wWDHl8ad9QE
-
Mele Kaliki Maka (Hawaiian for Merry Christmas)!!!! 8)
Beto your present came early :)
-
Hooray for Beto 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8)
Merry Christmas my dear forum buddies. Cal :)
-
Happy SVR and Merry Liver to you Beto!
-
Cool Beans Beto, SVR 12 and nice numbers to boot! Happy for You man. Tie a bow around that one you little elves! Gnatty should be coming up soon, as well as a few others. My 12 week EOT comes up next week. Due to the Holidays ,I won't know My status until the first week or two of the New Year.
Merry Christmas and Happy New Year to everyone, or whatever blows Your dress up. Good Health to all.
I JUST STOLE SANTAS' NAUGHTY LIST AND IT LOOKS JUST LIKE MY FRIENDS LIST!
:o :o :o :o ;) ;) ;) ;) ??? ??? ??? ???
-
hey post hep c survivorS there is a little transition period to cleanse your system if I can recommend a GREAT supplement that has helped me on this new greatful journey it is called JNK 90 VEGGIE CAPSULES, THAT REALLY WORK,,,, CHECK IT OUT ON THE WEB IONLY TAKE 1 A DAY AND THE TRANQUIL CLARITY FEELING I NOW HAVE FROM IT IS AWE!!SOME IT HAS VITAMIN K AND OTHER SEROTIN AND HEALING EFFECTS I FELT IT AFTER ONLY ONE WEEK MERRY CHRIST MAS''JUST WILLIE G'
-
WOW! What a Christmas present... I woke up this morning to new info from my health portal. My 12 week post test results are in. UNDETECTED!!! I'm stoked... now I can say SVR and use the word CURED (although I was already using it with caution in my mind).
It's hard to believe and a little difficult to comprehend, after all this time with HCV to be able to use the word cured. Like it's gone! I hope I can live bold and strong and fully knowing I have received this gift.
I thought the results would come after Christmas...what a Christmas present!!! Bree
-
Great news the best CHRISTMAS GIFT ! :D
-
Great news the best CHRISTMAS GIFT ! :D
Thanks... yes the best gift ever!!! :)
-
WONDERFUL NEWS, Bree! Amazing that your portal is active over a major holiday.
-
Congrats Beto and Bree! Way to go!
Had my 12 week blood draw last Monday. No results yet. Hopefully next week.
WillyG - I ordered JNK 90 VEGGIE CAPSULES per your recommendation. Hope they help as I have felt like crap for 3 months. Feel like the riba/viek aged me 5 years. On a positive note.. every day I feel a tad better. Just keep telling myself that once the riba has completely cleared , I will feel better. Read somewhere that it takes 6 months to clear the riba. I know the first time around it took a year.... ugh.
Tired of feeling bad. Hope the JNK helps!!!
dm
-
WONDERFUL NEWS, Bree! Amazing that your portal is active over a major holiday.
Thanks Gnatty! I'm so happy! I think they told me in the past that the portal was a 24 hour delay for posting in which case it would have come back Dec. 24... who knows how these things work. I made sure my docs office has it post automatically without him having to approve it first.
You are coming up soon right?
-
Congrats Beto and Bree! Way to go!
Had my 12 week blood draw last Monday. No results yet. Hopefully next week.
WillyG - I ordered JNK 90 VEGGIE CAPSULES per your recommendation. Hope they help as I have felt like crap for 3 months. Feel like the riba/viek aged me 5 years. On a positive note.. every day I feel a tad better. Just keep telling myself that once the riba has completely cleared , I will feel better. Read somewhere that it takes 6 months to clear the riba. I know the first time around it took a year.... ugh.
Tired of feeling bad. Hope the JNK helps!!!
dm
Drummer, there you are! I was worried about you! I had my test on Monday too... I'm sure your UND results will be in soon. It's what I expected but still a huge relief. My friends all said they knew it already... but seeing it in black and white really helps. I'm sure you'll feel better as time goes by. I'm not peak every minute but I'm starting to think some of it could be age. After all, I have nothing to compare it to. But I feel better... like I don't have that hepc feeling. And, I didn't have to deal with riba this time around.
Willy - I looked up the JNK veggie caps and I'm already taking most of the the ingredients in other supplements. I just felt like my body needed some supplement support. I'm thinking of a cleanse but wanted to get past the 12 week post mark.
-
dm. so glad to hear from you again. A lot of us were asking about you. Sorry you've had such a rough 3 months.
There's a person on vpak+riba in another thread who has landed in the hospital after being on the meds for only a little over 2 weeks. Her husband is asking whether anyone else landed in the hospital due to treatment. If anyone has info for him/her, here are the direct links to today's posts:
http://forums.hepmag.com/index.php?topic=3664.msg36323#msg36323
http://forums.hepmag.com/index.php?topic=3664.msg36344#msg36344
Bree, my ALT and AST are back and looking good (see in sig file below).
Gnatty
-
Yep, Gnatty I very good sign indeed. Mine were 28 & 19 and gave me confidence the VL would be UND. Yours too!
-
dm. so glad to hear from you again. A lot of us were asking about you. Sorry you've had such a rough 3 months.
There's a person on vpak+riba in another thread who has landed in the hospital after being on the meds for only a little over 2 weeks. Her husband is asking whether anyone else landed in the hospital due to treatment. If anyone has info for him/her, here are the direct links to today's posts:
http://forums.hepmag.com/index.php?topic=3664.msg36323#msg36323
http://forums.hepmag.com/index.php?topic=3664.msg36344#msg36344
Hey Gnat,
It has been a rough 3 months... but able to work... and no more insomnia! So thankful for that. Don't have near the appetite I used to and have lost about 10 lbs... but thats probably a good thing. Never felt close to going in hospital... but just generally crappy. Went through a weird period where I had severe pain in my fingers. Wasn't joint pain, but the bones themselves. It felt just like shin splints only in my fingers. Thank god it only lasted a few days. Now I just have occasional finger joint pain.... much less than before tx.
Anway, I will be glad when this ride is over.
dm
-
Drummer, there you are! I was worried about you! I had my test on Monday too... I'm sure your UND results will be in soon. It's what I expected but still a huge relief. My friends all said they knew it already... but seeing it in black and white really helps. I'm sure you'll feel better as time goes by. I'm not peak every minute but I'm starting to think some of it could be age. After all, I have nothing to compare it to. But I feel better... like I don't have that hepc feeling. And, I didn't have to deal with riba this time around.
Thanks Bree! Yep , riba sucks, big time.
My doc had me setup to do a blood draw on Jan 6, but really Dec. 21 was 12 weeks post eot, so I had em change it. fingers crossed!
dm
-
Congrats on your SVR12 Bree! That's some Christmas present! :D
kim
-
Congrats Beto and Bree! Way to go!
Had my 12 week blood draw last Monday. No results yet. Hopefully next week.
WillyG - I ordered JNK 90 VEGGIE CAPSULES per your recommendation. Hope they help as I have felt like crap for 3 months. Feel like the riba/viek aged me 5 years. On a positive note.. every day I feel a tad better. Just keep telling myself that once the riba has completely cleared , I will feel better. Read somewhere that it takes 6 months to clear the riba. I know the first time around it took a year.... ugh.
Tired of feeling bad. Hope the JNK helps!!!
dm
I will be very interested to know if the JNK helps you, drummerman. I hope you will post and let us know either way. I went and had a look at JNK after Willie G posted about it. I was tempted to order some myself.
Good luck on your lab results next week!
kim
-
Congrats on your SVR12 Bree! That's some Christmas present! :D
kim
Thanks so much Kim! I'm very happy... really I can't even find the words to describe this feeling.
-
Oh Bree,
My darling girl! If a positive attitude and a good heart counted for anything then you had it in the bag all along. I am so pleased for you. You've made my day! Calx
-
Hi DM,
Sorry it's been a rubbish 3 months for you. Fecking ribas! I finished the ribas 6 weeks ago and Viekira 2 weeks ago. I started getting post tx as soon as I stopped the ribas. I have the bone pain and joint pain. But my worst sxs if muscle pain and weakness. I also have brain fog back again. I have my first post VL Early January. SO about 4 weeks post EOT.
I hope you'll post your 12 EOT results as soon as you get them. Cal :)
-
. . .
have lost about 10 lbs
. . .
I think you sent those pounds to me :-[ Too bad you don't want them back :(
. . .
Anyway, I will be glad when this ride is over.
Here's wishing you a "happily ever after" ASAP.
-
Oh Bree,
My darling girl! If a positive attitude and a good heart counted for anything then you had it in the bag all along. I am so pleased for you. You've made my day! Calx
There's been many a day when you made my day, believe me! That book, the Happiness Trap changed me.
I must have given out 5 at least as presents this year.
I can't wait for all of us that are in the loop to get our results. I have a feeling it's going to be a very happy group. It's been so special to share this journey with you all. I'm still thinking about our get together in 2016! 8) Bree
-
Hi Bree,
The fares to Hawaii are really cheap for some reason? I will be there with bells on my love! :) Cal
-
Bree!!! So Freaking Happy For You! Riding in a truck down hwy back to sunny Florida.
Almost time to know that SVR feeling too...in my mind I am already there.my body says so...this year has been a whirlwind but 2016 is way too good to be true.Your posts are infectiously gleeful...please keep us smiling!
-
It's so exciting to read these stories of virus eradication. I can't believe we are at the point we are with so many people clearing. It's an amazing time, to be sure.
-
Hi Philadelphia, yep we are at the beginning of the wave with generic coming out..more people saved & less fighting w/ insurance.wonder what the generic costs?
-
If you head over to fixhepc you'll see costs - 12 weeks of sof/led or sof/dac for well under $2000 Australian.
-
Bree!!! So Freaking Happy For You! Riding in a truck down hwy back to sunny Florida.
Almost time to know that SVR feeling too...in my mind I am already there.my body says so...this year has been a whirlwind but 2016 is way too good to be true.Your posts are infectiously gleeful...please keep us smiling!
Mahalo Rosie! That's how I felt too. I told my body even before I started treatment that it's time now. I told the virus, it's been a ride, but it has to go now, it's time is over...it can't live here anymore (and I believed it and I guess the virus did too. ha). Tommy called me the Hep C Whisperer....
I felt it was gone, and sometimes a few lingering tweaks and body aches made me a bit fearful, but I overrode them and kept believing. Even though I knew it, the confirmation really helps!
Yes, 2016, is our oyster... what shall we do with it? (provided of course, we live each day starting now, to the fullest we can.)
-
It's so exciting to read these stories of virus eradication. I can't believe we are at the point we are with so many people clearing. It's an amazing time, to be sure.
Yep Philly, isn't life right now great for us? I hold so much space in my heart for Hep C suffers to be free!
Generics, or however we do it. We all need to take matters into our own hands when it comes to our health.
This forum is a supreme educator.
-
Here is to New Me Bree and her SVR12 8) ! Almost passed up Your results while reading posts. What an Xmas present :D
Hi there DM, Sorry You are still feeling bad. Seems I hopped on the Crapola train right after the last time I talked with You. Supposed to be on vacation, instead more GP , Internist , Chiropractor , PT and lab visits instead of R&R time. At least I have My SVR12 blood draw at the end of this month!
I will check in to the JNK that Willy posted about. Still having some G.I. issues so I haven't been taking any supplements lately. Everything either goes right through or turns to concrete. No happy medium it seems!! YEA!
Hey Cal! how are You doing Girl. Any word from Mary, Mary, Quite Contrary Up North in Alaska. Hope You Guys are doing well ;) ;D
Rosie , when is Your SVR12 lab work. It seems like You and I were close. I thought there was a couple of others also!
-
Thanks so much Tommy! I was waiting to hear from you 8)
I'm so stoked that one by one we are coming up SVR.
Can't wait for that get together in 2016!
I'm sure your body will find it's rhythm soon. What a roller coaster ride this journey is... a worthy one but can be up and down nonetheless.
Still stoked..... Bree
-
Hey there Slats!!!! I go in on jan 5th so will be chewing nails till the 9th or 10th!So glad you are still sending your cheerful & funny posts.We do still depend on it you know! Here's to a super fun new years & early great news on SVR!
-
Hey there Slats!!!! I go in on jan 5th so will be chewing nails till the 9th or 10th!So glad you are still sending your cheerful & funny posts.We do still depend on it you know! Here's to a super fun new years & early great news on SVR!
-
Bree,spoken like a true HepC whisperer! My friend recommended a book I'm ordering tomorrow called"The gift of adversity" I told her about our journey & she was so excited to recommend the book.Forgot the author of course!
-
Hey Rosie, Guess I need to go back to the Eye Doc, seems I am seeing double!!! :) Yuck , Yuck , Yuck! My labs are actually the 31st. But since I will be there on the 30Th. getting some other work I'll do them then.Then the same pulling hair out for a week or two.
I think Scout is right here with us also. Any body else? My memory ain't what it used to be. What were We talking about? LOL :)
DEAR OPTIMIST,PESSIMIST, AND REALIST. WHILE YOU GUYS WERE ARGUING ABOUT THE GLASS OF WATER , I DRANK IT! SINCERELY, THE OPPORTUNIST ;D
-
DEAR OPTIMIST,PESSIMIST, AND REALIST. WHILE YOU GUYS WERE ARGUING ABOUT THE GLASS OF WATER , I DRANK IT! SINCERELY, THE OPPORTUNIST ;D
The Opportunist must have been on Harvoni. HA HA HA :) 8)
-
Tommy & Bree FUNNY!! I was bouncing in a ford f150 @ the time I hit the tiny box 2x HA! but lets talk about eyes for a minute...My eyes are looking so bad lately.Red all the time & lookin' like I had a rough night @ the saloon. During tx I had some irritation but thought it would be gone by now. Keeping shades on for now... Other than my brain & eyes I'm damn near good as new!
-
Bree, You know it! All this time I thought I was a pessimist, turns out I'm the opportunist! ;)
Rosie, The red eye thing seems to be ongoing. But. no irritation. Eyes seem to be nice & lubricated. Doc suggested eye drops but I hate putting anything in My eyes , so-----! Still have a little blurry vision at times and some floaters that the eye Doc says are normal at My age, So I'm chalking that up to Old Timers Syndrome.
Now about that brain thing!!!!!! I know it is around here somewhere, I was just playing with it a little while ago------- :o ??? ::) Can't remember where I put that thing!
OMG, I AM SO RICH! SILVER IN THE HAIR, GOLD IN THE TEETH, CRYSTALS IN THE KIDNEYS, SUGAR IN THE BLOOD, LEAD IN THE ASS, IRON IN THE ARTERIES, AND AN INEXHAUSTIBLE SUPPLY OF NATURAL GAS! I NEVER THOUGHT THAT I WOULD ACCUMULATE SUCH WEALTH :) ;)
-
The eye thing is interesting, I am getting the exact opposite! My eyes were often showing blood vessels before I started Tx, now they are pretty clear. My eyesight is pretty ordinary, but it was ordinary before I started treatment so I can't blame the drugs for that.
-
OMG, I AM SO RICH! SILVER IN THE HAIR, GOLD IN THE TEETH, CRYSTALS IN THE KIDNEYS, SUGAR IN THE BLOOD, LEAD IN THE ASS, IRON IN THE ARTERIES, AND AN INEXHAUSTIBLE SUPPLY OF NATURAL GAS! I NEVER THOUGHT THAT I WOULD ACCUMULATE SUCH WEALTH
just excellent Slats 1056
;D ;D ;D ;D ;D ;D
-
As Tommy's brain fog clears...this is what we get :)
-
Tommy, I am right here with you guys. Get my Svr 12 on Jan 11th and my appt with hep Doctor is the 15 th. I am so looking forward to seeing the results. I took some time off of work the 15th to the 21st. Figured I would either celebrate or liquidate my assets and go on a worldwide vacation with the kids if this disease comes back. I am soooo over messing with this.
Scout
-
Hey Beto, What is happening dude? Not the usual brain fog, just unable to connect the dots at times. LOL! HE IS BAAAAACK!!! 8)
Scout, Don't waiting SUCK? I vote for CELEBRATION! Although the trip sounds most excellent also! I need all My assets so I can afford the New Year Medical bills, Insurance starts all over again, so I need the bucks,LOL :) 8)
Fixing to go in for a back cracking and massage to try to work out some of the kinks in the old body! Then its off to the new Internist to check out headaches and lower G.I. issues.
Jakas, Laughter is the best medicine and it don't cost a dime!
LIFE IS TO SHORT TO BE SERIOUS ALL OF THE TIME. SO, IF YOU CAN'T LAUGH AT YOURSELF-------CALL ME, I'LL LAUGH AT YOU!!! :D :D :D :D
-
Ok the eyes will be white when my blood is SVR & sometime after that I can pick up my brain. It would be so boring if everything worked at once. CELEBRATE !!!!!
-
Finally!!! got my lab results. Had to call as usual. 12 week EOT "HCV NOT DETECTED"!!!!
I'm still in shock. I was so nervous to call and felt like the news would be bad as I have felt lousy since eot and was experiencing liver area pain for a few weeks , this past week I had no pain though.
Huge thanks to all who helped me through this ..(hope I don't leave anyone out, so many helped me in ways you don't even know)..
Philly (of course!), Rosie, Gnatty, Willie (on sup you suggested for 2 days now) Lynn, Bree, Kim, Cal (still working on ACT! it helps!),Prudence, Slats (please send money, I'm stranded in Nigeria) , Scout, Beto, and all who post here. I have been on several forums these past eight years... this is the best!
Now, I wait 3 more months and get final blood draw and hopefully doc says no more appointments.
On another note, is 12 weeks und regarded as SVR???
Yet another note, some of you may remember that I had a terrible time with a wheezing cough that lasted months. I assumed it was the "riba cough", but my doc suggested I try allergy shots. So I have been injecting myself for a couple of weeks ( I have a mold allergy), cough/wheeze has gradually subsided and vanished! Not sure if the shots are responsible or just a coincidence as it can take up to a year for shots to have an effect or (as the doc tells me) some people respond immediately! Anyway, glad cough is gone.
Happy New Years to all! Hang in there. "Never give up, Never surrender. Activate the Omega 13."
https://www.youtube.com/watch?v=9fdcIwHKd_s
dm
-
dm, this is exciting! The rougher a person's treatment, the more excited I get when reading the news "12 week EOT 'HCV NOT DETECTED'"!
"On another note, is 12 weeks und regarded as SVR???"
Yes -- you've reached SVR12. More to the point, on these modern meds, 12 week EOT undetected is regarded as CURED!
-
"On another note, is 12 weeks und regarded as SVR???"
Yes -- you've reached SVR12. More to the point, on these modern meds, 12 week EOT undetected is regarded as CURED!
Thanks Gnat! I wasn't sure... still can't believe. It will be hard to not worry for 3 more months, hard to get my head out of that place!
dm
-
coolest of cool beans DM...wooohooo! SVR12 yo! Got mine too last week. It's so funny...I have had a headache ever since I got the news. I was like the only person who did not have the headaches during tx and EOT. Now for 24 weeks!!! happy new year...
-
Hi there DM, Sorry You are still feeling bad. Seems I hopped on the Crapola train right after the last time I talked with You. Supposed to be on vacation, instead more GP , Internist , Chiropractor , PT and lab visits instead of R&R time. At least I have My SVR12 blood draw at the end of this month!
Thanks Tommy. I feel a tad better each day and that keeps me going. Also, remembering that it took me a year to get over 1st tx.
Excited about your next svr blood draw!
dm
-
coolest of cool beans DM...wooohooo! SVR12 yo! Got mine too last week. It's so funny...I have had a headache ever since I got the news. I was like the only person who did not have the headaches during tx and EOT. Now for 24 weeks!!! happy new year...
Thanks and Congrats Beto! This tx treats everyone so differently ... its like a box of chocolates. I probably felt worse the 1st month off the meds than i did during tx. Yuck.
dm
-
Excellent news drummerman!
What a way to kick off the New Year, or to say goodbye to 2015 and a whole lot more!
kim 8)
-
Yea DM! I just knew it! I called Gilead Support Path and they are calling 12 weeks post SVR and Cured. I'm going with that. I think Lynn said it's 99+% cured. I'm cured and so are you. the 24 week thing is just extra extra confirmation.
FYI, I have had liver "awareness" these past weeks, like when I bend or move a certain way, I can feel my liver. It had me a bit concerned too. It still does but at least I know it's not HCV. And, Beto, I've had more headaches lately than before. What's up with that. I guess it's back to water which I just wasn't thirsty anymore after Harvoni. Small issues, I think.
And, I am majorly getting into the ACT process. Thank you Cal!
Again, Drummer, congrats!
I'm thrilled... all of us are turning up SVR! I think our whole tribe in this group that have gone through this together is getting cured. Yea, for all of us! 8)
-
Excellent news drummerman!
What a way to kick off the New Year, or to say goodbye to 2015 and a whole lot more!
kim 8)
Thanks Kim!!!!! Sorry I left you off my thank you list... you were on there originally, don't know what happened .. but have since edited!! You were one of the first I met and were quite helpful! Thank you!
dm
-
Yea DM! I just knew it! I called Gilead Support Path and they are calling 12 weeks post SVR and Cured. I'm going with that. I think Lynn said it's 99+% cured. I'm cured and so are you. the 24 week thing is just extra extra confirmation.
FYI, I have had liver "awareness" these past weeks, like when I bend or move a certain way, I can feel my liver. It had me a bit concerned too. It still does but at least I know it's not HCV. And, Beto, I've had more headaches lately than before. What's up with that. I guess it's back to water which I just wasn't thirsty anymore after Harvoni. Small issues, I think.
And, I am majorly getting into the ACT process. Thank you Cal!
Again, Drummer, congrats!
I'm thrilled... all of us are turning up SVR! I think our whole tribe in this group that have gone through this together is getting cured. Yea, for all of us! 8)
Thanks Bree! Yeah, thats exactly what I was feeling.. slight liver pain, when I would turn a certain way, etc. Not real bad pain... but yeah, more an "awareness" with just a bit of pain. It did concern me as well. But then it just stopped... I took that as a good omen... which I guess it was!
yeah, ACT is pretty cool. There are even some recordings you can download from their web site. Not very costly and I found to be helpful.
Someone should start a new post with a summary of where all of us are at, tx-wise. I would but too damn lazy! lol.
dm
-
Someone should start a new post with a summary of where all of us are at, tx-wise. I would but too damn lazy! lol.
dm, there already is a list:
http://forums.hepmag.com/index.php?topic=3084.0
and a different list for those of us who took Harvoni.
So you can be as damn lazy as you want.
-
Thanks Bree! Yeah, thats exactly what I was feeling.. slight liver pain, when I would turn a certain way, etc. Not real bad pain... but yeah, more an "awareness" with just a bit of pain. It did concern me as well. But then it just stopped... I took that as a good omen... which I guess it was!
dm
I'm still having that liver awareness and slight pain... was thinking I might have an ultrasound or something... I would be pleased if it stopped. I'm thinking it's just the liver re-adjusting maybe?
I'll check out those ACT recordings too.
Yes a list for our group might be good. I might start it but not today... today is Star Wars, then big potluck thing and major FireWorks at the Beach. Yea for life! 8)
-
Yay wow woo whooo and what a happy new year for you and us all!
About SVR aka sustained viral response.
All SVR means is any time post treatment you have a "not detected" result like say SVR4 not detected 4 weeks after treatment has ended. Not cured but a good sign you probably have cleared the virus. Heck even a week post treatment if you were tested then that would be SVR1 but wouldn't tell you much about cured.
SVR12 a sustained viral response 12 weeks after treatment has ended which many hep c doctors and the AASLD are calling cured. As Gnatty said I read somewhere that SVR12 is 99.8% likely cured also SVR4 equates to 98.5% cured.
SVR24 the date some doctors hold as cured
And my personal favorite SVR infinity cured forever!
Happy New Year to all!
-
dm, there already is a list:
http://forums.hepmag.com/index.php?topic=3084.0
and a different list for those of us who took Harvoni.
So you can be as damn lazy as you want.
lol! very cool.
thanks,
dm
-
gotta love our livers...am I right? We have put them through so much sh%$. They have been there for us the whole time, even the cirrhotic ones. Three cheers for our livers. My liver is my best friend. Well after Gnatty :)
-
Yay wow woo whooo and what a happy new year for you and us all!
About SVR aka sustained viral response.
All SVR means is any time post treatment you have a "not detected" result like say SVR4 not detected 4 weeks after treatment has ended. Not cured but a good sign you probably have cleared the virus. Heck even a week post treatment if you were tested then that would be SVR1 but wouldn't tell you much about cured.
SVR12 a sustained viral response 12 weeks after treatment has ended which many hep c doctors and the AASLD are calling cured. As Gnatty said I read somewhere that SVR12 is 99.8% likely cured also SVR4 equates to 98.5% cured.
SVR24 the date some doctors hold as cured
And my personal favorite SVR infinity cured forever!
Happy New Year to all!
Thanks Lynn,
I guess there will always be some remnants of the virus, thus the hesitation to use the "cured" word. But what I am wondering.... will it be necessary to get vl tests every 5 years or should I just get liver panels and if those get out of whack then get a vl test?? Just wondering. Won't talk to doc for 3 more months. Didn't even see him this time. Nurse said it was not necessary.
dm
-
Hi DM
I think we are the ones hesitant to say cured more than the docs :)
After so many years of being infected it is just so hard to believe we are. To me it's like a miracle ya know?
There aren't really any remnants of the virus if there were it would be roaring back like last year when I relapsed on Sov/Oly 12 weeks post my viral load was above my pre treatment level.
I only had the SVR 24 at my request and since I have had so many failures and am kinda 50/50 about asking to have a 1 year check. But yeah if the dragon should somehow sneek back we would see increasing ALT and AST test results.
The experts believe that relapse at this point where we are would be exceedingly rare and that the primary way we would test positive again would not be from relapse but from a new infection.
I have a coworker friend who was one of the lucky ones who cured with interferon and Ribavirin back in the day. His doc decided to test him since we have these new meds "just in case" anyway he came back negative after maybe 20 years since he treated.
Believe it we are cured!
-
After so many years of being infected it is just so hard to believe we are. To me it's like a miracle ya know?
Believe it we are cured!
It is hard to believe and it does seem like a miracle!
dm
-
My doc was only going to test at 24 weeks but I mentioned 12 weeks and he was totally agreeable.
Not sure about a year check. I don't think he does that, but probably would if I requested it.
It is hard to believe and it does seem like a miracle!
dm
-
I don't see where you originally posted that but yeah ditto ditto
-
Drum roll for Drummerman! I cannot tell you how happy I am for you ...no words to describe our group graduating to a new life free of hepc.You have been there from the beginning helping us all to cope & share the scary times.The fireworks have started in my neighborhood. ..3 cheers for a stunning 2016 my friend!
-
Drum roll for Drummerman! I cannot tell you how happy I am for you ...no words to describe our group graduating to a new life free of hepc.You have been there from the beginning helping us all to cope & share the scary times.The fireworks have started in my neighborhood. ..3 cheers for a stunning 2016 my friend!
Thanks Rosie! Enjoy the fireworks!
dm
-
Oh my golly gosh! Big hugs to you! Every time I see one of us come through the door I am so freaking excited. Congrats DM. You're the man of the moment. :)
-
gotta love our livers...am I right? We have put them through so much sh%$. They have been there for us the whole time, even the cirrhotic ones. Three cheers for our livers. My liver is my best friend. Well after Gnatty :)
Ah, shucks, beto :-[ -- you're right up there in my book, too. I'm grateful to my liver AND my kidneys (which were walloped in 1996 by what was diagnosed as lupus nephritis but for all I know could've been an EHM of HCV).
Yes, Rosie, enjoy the fireworks! Around here, it'll mostly be guns going off (fortunately, not in our immediate neighborhood, but only a few blocks away, so we'll be hearing them).
-
Oh my golly gosh! Big hugs to you! Every time I see one of us come through the door I am so freaking excited. Congrats DM. You're the man of the moment. :)
Thanks Philly! Right back at cha!
dm
-
Ah, shucks, beto :-[ -- you're right up there in my book, too. I'm grateful to my liver AND my kidneys (which were walloped in 1996 by what was diagnosed as lupus nephritis but for all I know could've been an EHM of HCV).
Yes, Rosie, enjoy the fireworks! Around here, it'll mostly be guns going off (fortunately, not in our immediate neighborhood, but only a few blocks away, so we'll be hearing them).
In my junior high years , me and my buddy always shot a shot gun in the back yard... in a residential neighborhood. Good times.
dm
-
Well it could be guns,gnatty!
-
gotta love our livers...am I right? We have put them through so much sh%$. They have been there for us the whole time, even the cirrhotic ones. Three cheers for our livers. My liver is my best friend. Well after Gnatty :)
Beto, the coroner (who was also the mayor) of Ferrol Spain would agree with you. He had the town erect a statue to the liver in 1987 - a liver-shaped granite sculpture to honour what he called "the silent and unselfish organ." Story here: http://www.apnewsarchive.com/1987/Spain-Inaugurates-Monument-to-the-Liver/id-f2e9cc5db49d4d9dc07425ea10fc1092
kim
-
Drum roll please----And the newest winner in the SVR12 Liver Lottery is-----------DRUMMERMAN 8) 8) 8) 8) 8) Great to hear the good news. Another one bites the dust! It's a nightmare waiting, but a dream come true when the news comes through! Best Wishes and good health to You for the New Year DM. :D Pinch Me so I know it is not a dream ;) :)
By the way, I'm stuck in Pakistan at the moment. I'll get back to You on the fund transferal. I could get some AK's or RPG's cheap at the moment though ;D LOL!
LIVER LOVERS UNITE FOR THE CAUSE!
I NEED TO GET ON MEDICATION SO I CAN SLAP STUPID PEOPLE AND BLAME IT ON THE SIDE EFFECTS!
-
Drum roll please----And the newest winner in the SVR12 Liver Lottery is-----------DRUMMERMAN 8) 8) 8) 8) 8) Great to hear the good news. Another one bites the dust! It's a nightmare waiting,
Hey thanks Tommy! It was a nightmare waiting for results. Still trying to shake the nervousness!
When do you get your next vl test?
dm
-
Eeeeegadds, I am really starting to get nervous for my 12 week EOT test on January 11. Every little ache or pain I am thinking I relapsed, I can't wait to get it done and hopefully this will be over
Scout
-
Eeeeegadds, I am really starting to get nervous for my 12 week EOT test on January 11. Every little ache or pain I am thinking I relapsed, I can't wait to get it done and hopefully this will be over
Scout
Don't worry Scout. I was doing the exact same thing. You've got this.
dm
-
Eeeeegadds, I am really starting to get nervous for my 12 week EOT test on January 11. Every little ache or pain I am thinking I relapsed, I can't wait to get it done and hopefully this will be over
Scout
I kept myself busy (which was easy at this time of year) and didn't have a lot of time to dwell on it. (I must say that achy liver thing was/is a little concerning). I also told myself I am cured and it was negative and that's what I expected to see. It's quite a process on this treatment road. It just tells us how much we really, really want to be cured! Scout, I just know you are SVR!!! Trust that and we'll be so happy when you get your results! 8)
-
Scout- I second Bree's knowing that you are totally SVR. Your virus was probably gone day one of tx. :)
-
I was really nervous too Scout. Getting my LFTs and stuff earlier made it easier as they had dropped even further, but I was on tenterhooks. Let me repeat what you said to me: "You've got this."
-
Thanks Philadelphia ...the stress is getting to me a little ...I am ready to come back on here and say I did it! Hope so anyway...
Scout
-
Hey DM,
Blood draw was scheduled for the 31st, but I was at the lab doing work for My new internist and did it on the 30Th. Now it's back to the waiting game for New Years!
Hope You are feeling better these days. How are the New supplements doing for You?
Scout, How are You feeling these days?
Waiting definitely blows. Staying busy does help. :)
HAPPY NEW LIVER TO EVERYONE!
-
Hey DM,
Blood draw was scheduled for the 31st, but I was at the lab doing work for My new internist and did it on the 30Th. Now it's back to the waiting game for New Years!
Hope You are feeling better these days. How are the New supplements doing for You?
HAPPY NEW LIVER TO EVERYONE!
Thats cool Tommy. The waiting game sucks... i know. But you know you got this dragon whupped!
Too early to tell about the new sup. Only have been on it a week.
I used to be king of the supplements and knew a great deal about them.... but this go around , I said screw it, I'm gonna eat what i want to eat and pretty much cut out all sups... except for occasional glucopower (which I still believe is the greatest supplement collection on the planet... only prob is, it can upset my stomach and give me heart burn so its tricky.
happy new liver to you too!
ps - did I read you were in texas??? If so, I'm right next door in Arkansas!
dm
-
DM,
Hell, that makes us practically neighbors! Yeah, I have not been taking any supplements until I can get My system regulated back to abnormal. Been trying to eat a little healthier though. Funny I used used have a problem with acid re-flux, but not so much since EOT.
TEXAS SAYS THEY HAVE A FERAL PIG PROBLEM. I SAY WE HAVE A BBQ OPPORTUNIY!
-
DM,
Hell, that makes us practically neighbors! Yeah, I have not been taking any supplements until I can get My system regulated back to abnormal. Been trying to eat a little healthier though. Funny I used used have a problem with acid re-flux, but not so much since EOT.
TEXAS SAYS THEY HAVE A FERAL PIG PROBLEM. I SAY WE HAVE A BBQ OPPORTUNIY!
Hi neighbor!
dm
-
Well , Howdy there Podnuh@ ??? :P ;) :D
-
Hey DM, I am doing well. Just waiting for the EOT test. I may actually take it a few days before the 11th because of a scheduling conflict. I don't think it should make that big of a difference. I feel good, but who knows. The mind is a powerful thing. I am just so ready to get this shit over with.
Scout
-
Hey Scout,
How are You doing on the stopping smoking thing? I haven't quit yet , but still working on it! :( :-\
-
I haven't started yet.kind of waiting to see if my results are still undetected...I am going to start the 21 day quit smoking plan if they are....if I relapsed....I am going to move into the Marlboro factory and just go to town...lol
Scout
-
Hey DM, I am doing well. Just waiting for the EOT test. I may actually take it a few days before the 11th because of a scheduling conflict. I don't think it should make that big of a difference. I feel good, but who knows. The mind is a powerful thing. I am just so ready to get this shit over with
Scout
I hear ya!
dm
-
How are you doing dm? Now that your medically cured?
Scout
-
How are you doing dm? Now that your medically cured?
Scout
Feeling a little better everyday. Able to sleep. Able to work. Appetite has come back. Still feel generally bad, but so much better than a month ago. Cough... gone!
Waiting on day I feel really good due to absence of virus! I know its coming!
thanks for asking!
dm
-
I'm having a lot of gratitude today! 8) I'm feeling pretty good (minus a sore foot) and it's an outstanding, gorgeous, beautiful, over the top day here in Hawaii.
Working on home projects, music playing, movies with friends tonight, life is good.
My gratefulness in deep, for so many things. Life is beautiful. Just wanted to say this :) Love, Bree
-
I just stumbled on this thread from another -- WHAT AN INSPIRATIONAL THREAD, so full of GREAT wisdom and hope, for those of us getting ready to get on the Harvoni train!! I will be returning to this particular thread often over the next 12 weeks +. I agree with Bree that gratitude is very important in this curing process and I plan to really try to focus on that during my treatment, which should be starting in the next 48 hours....... just waiting for "the" call with instructions on delivery, etc!! Again, great info here!! Thanks, FT
-
I'm excited for you! ;D Prepare to feel awesome. (A very well-hydrated awesome: water, water, water!)
-
Awesome it is, starting in the next 48 hours!!! A bright future is ahead ------ so grateful! FT
-
Bree, I smile when I read your posts. Just learned you are a rescuer!! YEAH!!! That's what drives me in the morning & I know even if I am a needle in the haystack of wayward animals...some find their way to me & get forever homes . My husband is supportive but worried that I was planning to keep feeding while on TX (Driving while under influence of Harvoni!!!)but it was a blessing to feed & know it got me out & thinking of them. This spring post treatment I hope I am stronger & do more for my furry friends. Another beautiful day in paradise.
-
Future thinker, love your name & your mindset is perfect. The cavalry is on the way!!! Harvoni kills most of the virus in the first few weeks. Grateful to have you on the forum. Keep posting!!!
-
Rosie13, so happy for your SVR!!! I am so hoping to post such fantastic news in the near future. You know, that's what this is all about -- our futures, our quality of life, our hopes and dreams getting back in the forefront of our lives. That's how I picked this "name". I want my future back! I can see how many people chose to stop posting after they get their lives back, but I am very grateful to have found this particular thread, as I think it will provide some good inspiration when I need it. I'll probably be primarily posting under "starting Harvoni" in the "on treatment" topic area. I'm going to focus on the POSITIVE, truly believe in the power of that, and am just ready to get on this train! Thanks, FT
-
Future Thinker, I will follow you with excitement because you are way ahead of the game with your positive attitude. I was afraid of everything. I was not happy with my gastro dr. so I drove 4 hours to find another one. I was so glad I did because this group had a team that handles denials & appeals & I had no idea it would be hard to get approval because I believed that I had paid premiums for years & how could they do that? I did not know about the forum yet either but somehow I found this unbelievalbe gift ...with so many wonderful minds who were ahead of me in all the aspects of treatment & guided all of us to calmly walk the path they paved. It has been the best thing diguised as the worst thing. There are people on this forum who just read & do not post their fears & you may help lots of people without ever knowing. I am so glad we are meeting now so when its time to cheer it will be awesome ! Happy Friday!
-
Agree, agree, agree! You may not have read my post under "Take it all the way to the state if you have to" under "Considering Treatment" -- I've been waiting for this approval for nearly a year. Now, this a.m., there's some question w/the prescription, so hopefully this minor glitch will be quickly resolved and they will send me my miracle pills! I've been following this website since I was diagnosed in 2011, but didn't start posting until last year, after I was denied by my insurance co. It's not been a fun year with all this fighting for coverage, but the state is making them pay for this treatment and I am ready for it! I truly am grateful these DAAs have been developed for us and plan to stay focused on that. So many on this forum have been thru multiple treatments and paved the way for the rest of us to have more effective and safer treatments. Lots to be thankful for! FT
-
FT, I was hands on with the specialty pharmacy. If there is a glitch they will hopfully have answers for you. Once you take charge they have all your calls on record...makes a big difference.Happy Friday!
-
Thanks FT and Rose for your dialogue! I haven't been posting much lately for a few reasons. I had a stomach bug, a hurt foot and a host of misc stuff going on plus very busy business (which I'm grateful for.)
Thank you FT for bringing me back to what my intention is for getting cured... to live a great life!!! Some old habits die hard just like the virus. With all of the stuff going on - I'm know I'm different, and it is different to live without HepC. It's a new opportunity for a new life!
Even though I haven't been feeling peak lately, I have seen more and better good feeling times than I have in years. I know I can just schedule something and not be so guarded with my energy as I can handle it now. It's an interesting concept to not have to be quite so protective and it takes effort to do that.
FT, I know your treatment glitch will get worked out. Let me know please!
Tell me where you are posting and I'll follow. With your mindset and attitude, the sky's the limit! Once we have decided to get this treatment, nothing come hell or high water will stop it. I found this forum about a year ago when I first learned of Harvoni. I didn't sign up until right before I started taking it in July but I read it frequently and it made me an kind of expert on this disease and it's treatment. You'll find yourself educating others, even in the medical profession.
Rose, you are right about me, I do have a element of "rescuer" in me. That's why Polly, the stray cat is on my front porch right now! Ha. 8)
-
Heres me making the most of post-treatment
https://www.hepmag.com/blog/cuban-journey
-
Awesome article Philly! I love your writing style! Yep, you are living the "Post"... which is the object of the exercise (after saving our lives, of course)!
-
Hi Bree, glad you're back on the upswing after the pains...I am having weird rashes here & there.not blaming the expensive pill but...it is very stubborn not healing.
Philadelphia,your trip to Cuba sounds like a great adventure.The guy watching & driving was hilarious but I hope you got out fast!Great read!
-
Bree, thanks for "coming back", I just wanted to let you know what an awesome read this thread is and I really think everyone who is starting the "cure train" needs to be aware of it, and use it as needed during our journey. People tend to post with problems, vs. success, that's just the way we seem to be wired, and it's good to have both perspectives here for educational purposes. I just posted my glitch issue under "Take it all the way to the state board if you have to", it should be resolved by early this week and I will board the Harvoni train at last! I thought I'd post under "Starting Harvoni" once I'm aboard. Life is full of ups and downs/ good and bad, we all know this........ we just need to try to focus on the positive and, really, try to be grateful for each day. Definitely not always easy, but worth a good try. I'm just very, very grateful that these new DAAs have been developed and the course of this treatment is nothing like it was in the past for so many others.
Rosie13, thanks for the heads up w/ staying hands on with the specialty pharmacy..... you were spot on!! Thanks again for the well wishes!! FT
-
Philly, loved your Cuba post! My husband and I would LOVE to go there whenever they lift the US tourism restrictions more. I'm originally from FL and "the evil Cuba" was a part of my schooling. Too funny they knew all about Skippy ---- it really is a small world!! FT
-
FT - I hear you... when I was on treatment I couldn't even go to the post treatment threads as it freaked me out and scared me so much. I don't want to live my life waiting for blood test results to tell me if I'm o.k. Having said that some folks have had a very hard time and are still so gracious about it. I'm convinced at least some of it is the habit we have learned to reinforce with our point of view (fear).
Some of us have no one to talk to about our fears, symptoms and concerns... so this forum is it. We still have a responsibility as to how and what we project out there in the world.
Yes, we all have anxiety, for sure, but to accept that as a mindset is such a waste of the present. It's a personal development challenge to live a less "fear-based" life. Have I mastered it? No way! But I'm aware enough to know it is worth it to make the effort to chip away at breaking the cycle.
I like what Lucinda talks about - waiting is an art - or waiting gracefully is an art.
So the challenge/opportunity comes to how to acknowledge/accept our present, and be masterful about our intention for living life. And, I guess living well is an art too... one that I am working on.
After the fear of relapse subsides, then the challenge/opportunity is really how to live... which is the opportunity anyway, hepc or not. For us, with a new lease on life, it can be even more daunting. Just glad to be on the journey.... and so grateful to be cured! 8)
-
Yes, I can't deny that the words "relapse" and "RAVs" aren't in my mind, but I just have to look forward, give the Harvoni its due, and pray very hard I reach SVR and stay that way! There were many times I, too, couldn't read some of the info, since I was still fighting to even TRY treatment! But now that that initial fight has been won, I just have to look forward and focus on my health during the next 12 weeks, both mental and physical. Life w/o HCV? A more-normal energy level some day??? What wonderful thoughts! I can count on 1 hand how many people I've shared this HCV diagnosis with, so this forum truly is a blessing. Thank you Hepmag and everyone else who has posted about their journey! FT
-
FT- Share some of the same thoughts. Outside of my parents,sisters, wife and best friend, no one knows my status. My wife says I am the carefree one. I dont worry over much. I dont fret over the unknown. Why worry over something that may not exist. But when I was diagnosed. That aspect changed. I'm worrying that her or my kids may come in contact with my blood. Im protective of personal grooming items. How much longer will Hep be with me. (Before curent treatments) will Hep be my demise? Every abdominal cramp is that the C doing more damage?
Glad to have found this forum/website. Happy to read the concerns and triumphs others have experienced in eliminating the virus from their bodies. Hope, when I disembark this ride, I'll be waving a joyous goodbye to C and remain undetected. I, too, want a normal life back!
-
JR, many people on this forum have experienced the same thing as you. That's what is nice, because you are talking to people that yes, truly understand what you are feeling and it helps to know that. No one, a spouse, sibling, or friend can possibly understand what it is like to have this disease. They can emphathize but they cannot truly understand. It's like having an elephant on your back, and no one else but you can see it, and it is slowly crushing you to the ground while people watch. I was so paranoid about my husband and children somehow getting this from me, thank god they didn't. I will tell you at your 12 week end of treatment test when you are undetected it is a very very surreal moment in your life . I remember I looked at my doctor and said what do I do now? I mean I have lived with so long. He said its normal to feel this way. I could walk around and not feel like a black cloud was always following me, I wasn't a big infection around my children. I still find myself hiding my toothbrush and razors from my children. It's not just something you can turn off, but I am getting there. One thing I am doing is a couple people have private messaged me that are trying to get treatment or have just started treatment and it comforts me that I can help them through the process maybe doing some good for someone else like this forum did for me. Your gonna do great, and your going to get the elephant off your back
Scout
-
Scout, what you said is exactly why we are all on this forum -- it is a great place, a real comfort in a windstorm of emotions and fears. What a way for you to start 2016, with 12 wk EOT SVR! I am very hopeful that 2016 will be my year, too, and many, many others. Thanks for your help, FT
-
What Scout said... there are no words to describe the feeling of seeing UnDetected
on your report, especially 12 weeks post treatment (or at any time for that matter).
It's hard to wrap your brain around... and still is. Sometimes I'll just text one of my friends (only a few know, my close inner circle of about 5) and say #grateful or
or we'll just be texting and I'll say #hepc free me! It kind of puts things in perspective.
FT and JR - so happy you are on the journey for freedom!!!
Have a happy week everyone!
-
Yes FT,,,2016 is going to be the year of me! It's my turn to have a good year. I think for all of us on this forum 2016 is going to be good!
Scout
-
Scoutdoy- thank you for the words of encouragement. You've said exactly how I feel about the "elephant" in the room.
-
Scout, how funny, but that's exactly what I said to myself around new years ---- this was going to be the year for ME, and little did I know at that point that the state IMR would rule in my favor!
It's looking like I will start this miracle drug tomorrow or Thursday, still having some stupid issue with the prescription!!!! All keep fingers crossed, please!! FT
-
Well, I wanted to make my "formal announcement" on my thread, Making the Most of the Post.... drum roll. 24 week Negative, Not Detected. I AM CURED. 8)
How did I celebrate? Having ahi burrito wrap with Else... can you believe it?
She's in Hawaii and we had dinner plans, and wa la, my results came in...
So nice to spend time with you Else! My new forum friend and friends for life.
I knew I was cured, but funny how those butterflies come in when one opens those results. Keep the faith folks... we are getting cured left and right. Trust it!
Oh and ast/alt normal. Shock and awe. I love Harvoni and a new life awaits!
Happy Happy Happy Dance! Bree
-
Woowoo ...congrats Bree!!!! You are seriously FREE!
Scout
-
Woowoo ...congrats Bree!!!! You are seriously FREE!
Scout
Thanks Scout! And, by the way, "Fre" is my nickname and has been for years! Ha.
-
Hi Bree congrats again and say hi to Else for me aloha :)
-
Hi Bree congrats again and say hi to Else for me aloha :)
Thanks Lynn! I'll be seeing her a couple of more times while she's here. So cool.... xo!
-
Bree, it's wonderful to hear your great news. It must be especially sweet after the hell of pegint/riba.
-
Wonderful news Bree! So pleased for you. :)
-
;D 8) ;D 8)
-
I know I said it on another thread already but... CONGRATS BREE on making SVR24!!
kim 8) 8) 8)
-
Bree, it's wonderful to hear your great news. It must be especially sweet after the hell of pegint/riba.
Thanks Gnatty! Yep, it is really sweet after that last extreme treatment fiasco.
Aren't you about ready for your 24 weeks?
-
Wonderful news Bree! So pleased for you. :)
Why thank you Philly!!!! 8) Excited to just get on with life. I like what you write about in some posts, that one day you just don't think about it anymore, that you are just doing life (paraphrasing)!
-
;D 8) ;D 8)
See you later today Else! I can't believe I'm saying that!
-
;D 8) ;D 8)
See you later today Else! I can't believe I'm saying that!
-
I know I said it on another thread already but... CONGRATS BREE on making SVR24!!
kim 8) 8) 8)
Thanks Kim! I'm having a strange thing where after I post it goes back to the beginning of the thread.... that's why I had a double post earlier. So strange.... but hey, I'm hepc free!
-
Bree -- HAPPY DANCING TIME!!!!!!! Fantastic news!! FT
-
Bree -- HAPPY DANCING TIME!!!!!!! Fantastic news!! FT
Thank you FT. It's sweet after all! To go on without this burden... takes some mindset adjustment for sure. 8)
-
Bree, I didn't even realize that my 24 week test should have been this week. I called and I am gonna take the test next week...
Scout
-
Scout, with your terrific ALT and AST, you're golden.
As for forgetting to take the labs, I almost did. You must have a life ;)
-
Bree, I didn't even realize that my 24 week test should have been this week. I called and I am gonna take the test next week...
Scout
Yea, pretty cool when you forget to take the test! I had counted it out and written it on my calendar from the beginning.... (I'm one of those). 8)
-
For the first time in a long time, i haven't thought about it. Hmmmm... That's weird!! LOL
Scout
-
For the first time in a long time, i haven't thought about it. Hmmmm... That's weird!! LOL
Scout
That's awesome!!!
-
My 24 week results are due this week too. I had no idea there were so many of us that graduated at the same time!
-
We're very lucky to be part of this large, expressive cohort.
-
Hello everyone!
I just received an email from my NP that my 6 month EOT came back CLEAR!!!!! I am truly ecstatic! I wish it for all!!!! And for the ones that are still waiting for their moment don't give up hope!!! Miracles can happen. It's been exactly one year from when I first discovered I was infected. Probably from back in the 70's. Don't know how or when but I got it!! My 3 sons all tested negative so we were fortunate that they didn't contract the virus while I was pregnant with them. I feel like I've been given a second chance at life. Now hopefully my liver will heal a little because I'm at F3 and I also have a fatty liver that pains me quite often. Forge forward everyone, we are truly living in the best time for this disease!!!! Slay the demons!!!
-
Congratulations, MelHu! Yes, surely your liver will heal, perhaps even quite a lot. My hepatologist is very optimistic about fibrosis scores improving once the HCV is cleared.
-
It is so reassuring to read post that tell of hepatologist who are optimistic about improving fibrosis scores. I just had my first appt with a new gastro/hepa doctor and she informed me that they believe that there can be some healing but they do not order a new scan...I don't understand why...she said that they are confident that the first scan is a true reading of the condition of your liver of which mine is F4 which of course leads to a lifetime of 6 months follow ups..ultra sound and blood draws. What if after a few years my scan read, miraculously, F2 would I still be considered cirrhotic..."we don't order new scans" couldn't get any more out of her!!! I felt really uninformed, maybe they just don't know yet?
So frustrating! I talked to a member account rep at the radiology lab and he confirmed that the reading can be greatly effected by inflammation and that most Doctors in the past want a high score as to get patients approved for treatment which I certainly wanted myself...but I also want some improvement!!! And a doctor that is, not unrealistic, yet may give me hope...I guess that's what I count on all of you for :)
-
Even if we do step away from the edge and show as F3 at some point in time we will likely still need to have AFP and ultrasounds every 6 months because we had or have cirrhosis. Also the scans are not that accurate at mid range damage the best a fibroscan can say with confidence is no damage or cirrhosis.
Really for us test numbers mean little the things that matter is not developing any further symptoms of cirrhosis.
Per the AASLD guidelines "Recommended Follow-up for Patients Who Achieve a Sustained Virologic Response (SVR)."
Surveillance for hepatocellular carcinoma with twice-yearly ultrasound examination is recommended for patients with advanced fibrosis (ie, Metavir stage F3 or F4) who achieve an SVR.
Rating: Class I, Level C
SVR typically aborts progression of liver injury with regression of liver fibrosis in most but not all treated patients. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Because of lack of progression, patients without advanced liver fibrosis (ie, Metavir stage F0-F2) who achieve an SVR should receive standard medical care that is recommended for patients who were never infected with HCV.
Among patients with advanced liver fibrosis (ie, Metavir stage F3 or F4) who achieve an SVR, decompensated liver disease (with the exception of hepatocellular carcinoma) rarely develops during follow-up, and overall survival is prolonged. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Patients who have advanced fibrosis or cirrhosis continue to be at risk for development of hepatocellular carcinoma after achieving an SVR, although the risk in these patients is lower than the risk in persistently viremic patients. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Patients with cirrhosis who achieve SVR experience increased survival (compared with patients with cirrhosis who are untreated or in whom treatment fails), but still may be at some risk for hepatocellular carcinoma; thus, they should continue to undergo regular surveillance for hepatocellular carcinoma despite the lowered risk that results after viral eradication. (Bruix, 2011) The risk of hepatocellular carcinoma among patients with advanced fibrosis prior to treatment but who have regression to minimal fibrosis after treatment is not known. In the absence of data to the contrary, such patients remain at some risk for hepatocellular carcinoma and should be monitored at regular intervals for hepatocellular carcinoma.
Liver fibrosis and liver function test results improve in most patients who achieve an SVR. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Bleeding from esophageal varices is rare after an SVR. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Patients with cirrhosis should receive routine surveillance endoscopy for detection of esophageal varices if not previously done and these should be treated or followed up as indicated. (Garcia-Tsao, 2007)
Patients in whom an SVR is achieved but who have another potential cause of liver disease (eg, excessive alcohol use, metabolic syndrome with or without proven fatty liver disease, or iron overload) remain at risk for progression of fibrosis. It is recommended that such patients be educated about the risk of liver disease and monitored for liver disease progression with periodic physical examinations, blood tests, and potentially, tests of liver fibrosis by a liver disease specialist.
But we are cured so we should not get worse and maybe get better with time but we still will need to be monitored.
-
Thanks everyone for those encouraging words. At least having SVR stops progression of the disease. Does anyone know the kinds of foods and diet that could help to build the liver up? I'm at a loss. I am a little concerned because I have been having some pain around the liver and a little indigestion.I sure appreciate everyone's input
-
There really is no way to build the liver up. What we can do is avoid further harm. I have heard a heart smart diet is a liver friendly diet. Avoid salt especially if you have edema and ascities. Carrying excess weight can increase fat in the liver so being in normal BMI range can help reduce future damage to your liver also.
If you have significant fibrosis that means scar tissue has replaced healthy liver tissue. If you have scars think about how long it takes scars to heal they don't really they just become less noticible with time.
So it is with F4 fibrosis aka cirrhosis our livers are scarred up old warriors.
Being kind to our livers is all we can do and wait for time to heal.
-
Lynn, to me the most important part of that AASLD excerpt is, "The risk of hepatocellular carcinoma among patients with advanced fibrosis prior to treatment but who have regression to minimal fibrosis after treatment is not known. In the absence of data to the contrary, such patients remain at some risk for hepatocellular carcinoma and should be monitored at regular intervals for hepatocellular carcinoma." As more evidence comes in, the guidelines are likely to change.
My hepatologist seems to be very interested in gathering more evidence from his large cohort of cured HCV patients. He scheduled my FibroScan for 9 months after my EOT so that there is time for enough of a decrease in kPa that I'd lose the cirrhosis label. (Of course in my case I already have the contradictory FibroSure F2, taken just a day-and-a-half after the FibroScan.)
-
I liken it all to the example of quitting smoking and lung cancer. For those who smoke they have a higher risk of lung cancer. When they quit the risk decreases and for every year after quitting smoking the risk of lung cancer decreases but if I remember correctly it takes 20 years for the risk to be the same as someone who never smoked.
So for us with cirrhosis we have an immediate reduction of HCC risk and my guess is the longer we go without developing HCC the less likely we ever will.
We are all pioneers in this undiscovered country of freedom from hep c and we are blazing the trail of what this will mean for us all.
I am interested to see if I have any changes with my long standing well established diagnosis of cirrhosis it would be interesting to see if there are any changes from my fibroscan of 27 from October 2014 since I completed treatment almost 11 months ago
-
Hi Everyone! I am delighted to be reading all the great news today! BREE!!! So exciting to be SVR24! Chills & cheers! I will be going to Mayo Clinic in May for my final checkup ( I HOPE!) There will be another Fibroscan & labs & a consult about the results. I have to drive up a day ahead & stay till it is all completed. No worries...I hope to see some improvement in the score but if not they did tell me it could take up to a year for any changes. Grateful for all the posts ...they are heaven on earth!
-
Thanks Rosie! And, that's awesome for you too! I'm so glad you are getting such thorough medical care too!
-
You are going to do great Rosie,,,,it's your turn for great results. 2016 is our year...for our group here on the forum
Scout
-
Hello everyone!
I just received an email from my NP that my 6 month EOT came back CLEAR!!!!! I am truly ecstatic! I wish it for all!!!!
Congrats MelHu!!! So many SVR24s coming up right now. It's great news all the way around. :)
kim
-
Yes, Mehu you as well! I'm so happy and you sound just thrilled! It's great to know we are rid of this virus once and for all! 8)
-
So I got my (svr24) results. The wait was every bit as nerve racking as SVR12. I got the results on the small screen of my cell at the end of a long day. I almost could not open the PDF. Anyway the result of the PCR quant were displayed differently and the number quotient was <20 not 15. But the arrow was pointing south so I thought dude I done...and celebrated. Woke in the middle of the night fearing the worst when I thought something was amiss. Got to my computer and read it again. Said; HIV Quant. So they screwed up I had to go back today for bloods. Well I don't have HIV but don't know if I am truly C free. My aly/ast were good. I guess me and Tommy will get our results at the same time. :)
-
beto, oy, veh! You and Tommy have something else in common: incompetent labs. Remember how Tommy's lab lost his first VL result but billed him anyway?
Glad your alt and ast are good. Time to go do something so enjoyable it takes your mind off the extra waiting.
-
Beto....Honestly I think that would give me a heart attack. Since I completely forgot about getting my 24 week test done I am going on Tuesday, so I should have my results by Friday.
Scout
-
It seems that 24 week follow up is standard. My new Doctor said that the 12 week was considered a cure but said nothing about 24 week test. I certainly would feel better with a backup 24 week test! I just changed Doctors because I was getting incorrect lab results read from the last one and a whole mess of info...not sure this one is going to be anymore comforting :(
I can't afford to keep changing Doctors so I guess I'll just show up to get ultrasounds twice a year with liver panel and request what else I would like, such as 24 week post test and a liver scan at one year which she says they are not in the habit of ordering...Grrrr!!
-
Lynn,
Thank you for the AASLD guidelines info and the comparison to smokers and lung cancer...makes sense!! Darn though, I thought it was 10 years to have the lungs of a non smoker. Oh well, 7 more years on that one :)
I have every intention of following up with my ultra sounds to keep an eye on whats going on in there...and thanks to you Lynn it now makes more sense!!! Your the best :)
-
Hey Beto,
My doctor ordered HBV test (not HCV) at the EOT - it was me who caught it on the results. Now I check before I go in and again when I go in for blood work because who knows what they order!
And, I did my last follow up with my doctor today (I'm not a fan of him for many reasons). I said Well, I'm cured. He said almost, you are 99%. Perplexed and disappointed, I said when should I come back at 9 or 12 months. Then he realized it was my 24 week check (duh, seriously) then he said you don't need to come back and circled "HVC Negative" on the test paper then wrote " = cured!" That felt good I must say. It's also good I'm through with that office.
In the end, I got what I wanted. I paid my dues. I set an intention. I didn't take no for an answer. And, I got cured. And, I am grateful, to da max!!!
-
Labs are getting confused what with all of the different tests for hepatitis. So Bree, you did re-take the 24 then? Doctors seem to be 50/50 on 12 or 24 weeks. I have always just considered the 6 months the one where I would feel safe. I am too neurotic to ever believe I am actually cured...teehee.
Hey scout, looks like you me and Tommy next week for SVR royale. Yes I don't know why I still get so crazy nervous opening the lab result...but I do.
Gnatty- Yes I'm going to be so busy cooking and entertaining I won't have time to stress about anything. I get an email from the lab and I can access the results before my Docs office.
So, see y'all at SVR 24 !!! woooohoooo! Everyone have a good Easter. On your Keaster. :)
-
Thanks Else and Future Thinker. Absolutely right about this forum. I couldn't have survived the treatment and all the processes that went with it. Everyone here has one common denominator; Slay The Dragon!!!!! Everyone's thoughts and opinions were so valued and cherished. There were a few times is in the wee hours of the night I would get in this forum and read everyone's posts. Got me through some real dark times. I sure appreciated it
-
Hey Lynn
Thanks for the reply as always most welcomed. Your knowledge on this subject is first class.
And you are right Rosie, this form IS "Heaven on Earth!" And everyone's posts Sure helped me keep my sanity going through the process. Don't know what I'd do without it.
-
MelHu, getting through this is quite a puzzle sometimes. We are tired & feel betrayed by the medical system & have brain fog to boot. When you get the correct info on the forum you can move forward, ditch the worries & breath. Harvoni is curing us. We will all be ok...praying for the many who have not received the care yet that they deserve. I am happy that you found peace of mind here like I did. Have a wonderful day!
-
Labs are getting confused what with all of the different tests for hepatitis. So Bree, you did re-take the 24 then? Doctors seem to be 50/50 on 12 or 24 weeks. I have always just considered the 6 months the one where I would feel safe. I am too neurotic to ever believe I am actually cured...teehee.
So, see y'all at SVR 24 !!! woooohoooo! Everyone have a good Easter. On your Keaster. :)
Beto, that was actually the EOT labs that my doctor ordered incorrectly. For the 24 weeks, I got the correct ones (after the other mistaken labs I always double check). When I went in to see him for follow up, he mistakenly thought it was the 12 weeks results instead of the 24 weeks and told me I had to have another test. My heart sank and I said "when at 9 or 12 months"? When he realized (because I told him) that it was the 24 weeks he was looking at, he wrote "cured" on the paper and said I don't have to come back. Now I ask you, who has brain fog? ha.
-
Sorry Bree,
When you are thinking you are finally done only to find someone screwed up, its tough. I got my reals' back today. They rushed because my Doc probably yelled at them. Undetected. Now you hurry up and get your reals' so we can plan a party. I am absolutely sure you are clear as a bell. Easy for me to say...I like could barely open the results on-line. What a wuss, hey?
-
Sorry Bree,
When you are thinking you are finally done only to find someone screwed up, its tough. I got my reals' back today. They rushed because my Doc probably yelled at them. Undetected. Now you hurry up and get your reals' so we can plan a party. I am absolutely sure you are clear as a bell. Easy for me to say...I like could barely open the results on-line. What a wuss, hey?
Hey Beto! First, congratulations to you!!! One more feather in our group cap (Or Tommy's Texan cowboy hat) :)
I am done!!! UND! (It was the EOT as in day after last pill he messed up not the 24 week and he then thought the 24 weeks was the 12 weeks....) I strongly believed at 12 and 24 weeks I was undetected. I'm keeping up with it even if doctor is not. I took this whole process in my own hands long before I even got treatment or I wouldn't even have gotten it. (Still got butterflies opening the test results online though). The main thing is, I'm cured and done with that doctor!!!! I was mostly relaxed waiting on the 24 week results (I was too busy to obsess) and had access to them online a couple of weeks before my follow up appt. I mentioned perhaps a fibrosure followup re Fibrosis score as I was 1-2 and he said no need as the theory is stop the Hep C and liver damage stops and we can generally assume improvement from there. And, if no cirrhosis no need to be concerned with cancer or other damage to liver. That's his opinion (for what it's worth). Yes, we are the lucky ones!!!
-
Hey Bree! So happy to hear all your good news, as I think I posted recently. Re: Another Fibrosure test -- I was thinking, if I do get to SVR24, that I'd really like to see those numbers go back down to normal, too, just the enzymes and VL. So I was planning on asking about that whenever that time comes (and hopefully it will!). Maybe just add it to my annual blood work the year after SVR24.
Your thoughts, and others in that grand category of SVR24!! Still chugging along on that Harvoni train........ FT
-
Hey Bree! So happy to hear all your good news, as I think I posted recently. Re: Another Fibrosure test -- I was thinking, if I do get to SVR24, that I'd really like to see those numbers go back down to normal, too, just the enzymes and VL. So I was planning on asking about that whenever that time comes (and hopefully it will!). Maybe just add it to my annual blood work the year after SVR24.
Your thoughts, and others in that grand category of SVR24!! Still chugging along on that Harvoni train........ FT
Well, when you get to SVR 24 (not if) you won't have a VL as it will be gone as the virus will be undetected. Most have LFT (ast/alt) in normal range but not always for different reasons. My doctor (ever the charmer) said he would not order a fibrosure test for me as there is no need as the liver should only get better.... (would be nice to see that as compared to a baseline of the first test.) But forget him, if I really want one my GP will order it for me. It's not the first time I went around him. He argued with me about a 12 week SVR test and finally ordered it. It was that way from before I even got treatment. I just mentioned that so others know that have issues with doctors that they are not alone. I didn't even know a fibroscan test existed until this forum. Like I said, ever the charmer. I've moved on emotionally and physically. I'm cured!!! That was the object of the exercise! And, I'll find a way to follow up if I decide I want to. Basking in the freedom. HA!
-
Wow the good news just keeps coming! BETO & BREE YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!
-
Well, when you get to SVR 24 (not if) you won't have a VL as it will be gone as the virus will be undetected. Most have LFT (ast/alt) in normal range but not always for different reasons. My doctor (ever the charmer) said he would not order a fibrosure test for me as there is no need as the liver should only get better.... (would be nice to see that as compared to a baseline of the first test.) But forget him, if I really want one my GP will order it for me. It's not the first time I went around him. He argued with me about a 12 week SVR test and finally ordered it. It was that way from before I even got treatment. I just mentioned that so others know that have issues with doctors that they are not alone. I didn't even know a fibroscan test existed until this forum. Like I said, ever the charmer. I've moved on emotionally and physically. I'm cured!!! That was the object of the exercise! And, I'll find a way to follow up if I decide I want to. Basking in the freedom. HA!
Like you, I didn't know what a fibroscan was either nor did my doctor. I also found out about it on this site. His nurse is checking into it now after I asked about it. I mentioned she should get on this site and recommend it to others and she told me to stay off of it. Honest to God!
-
Hi KC
The Internet can be the Wild West of misinformation so not surprising your nurse would try to dissuade you from getting information online there is a lot of very bad and incorrect information out there.
We are for the most part lay people just trying to do our best but we can and have made mistakes or been wrong about things. We just try our best and try to fact check as best as we can.
Mostly this should be a place where we can come together to share our experiences and mutual support to one another
-
I understand that Lynn but, she and other health care providers should check into it before giving advice against it. I know that you cannot believe everything you hear on line, BUT....I have gathered more good info on this site than I ever would have expected. It was and still is such a great support group. It helped me a great deal while in treatment. It will be a year in June and I still pop in once in a while to see how others are doing. I still have issues but no regrets. Thank you for starting this amazing wealth of support and information.
-
Yes your nurse doesn't know us and what we try to do here so just went with the standard answer of avoid internet chat rooms for advice. I really can't fault her for her answer and I figure our medical teams have better stuff to do than screen internet advice forums for accuracy but yeah too bad she dismissed us out of hand.
While we are not perfect (but who is) we do try our level best to help one another.
Surprising they didn't know about fibroscan. My doctor is the head of the liver center at a hospital in Seattle they don't seem to mind I visit these forums and discuss my findings with them. They seem to appreciate informed patients.
Maybe in your doctors office's case consider the source on them as they seem to not be up to speed like they need to be to best help their patients.
Best to you
-
Thanks Lynn, I totally agree with you. Looking for another Doctor but they are hard to find.... Thanks for all your support.