Hepatitis Forums
Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: slats1056 on October 14, 2015, 10:58:46 pm
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Hello all You Global Warriors, Hope this post finds everyone feeling better than I am right now!
Have not posted for about 5-6 days, been kind of out of it. EOT was 10-6-15 and I immediately started having problems. Bad lower G.I. distress, fever, migraines , and all around feeling like crap. Lower back and hips ache like hell. Neck,knuckles, and feet too, just not as bad. Sleeping much better though when the aches allow it. 6-7 hours a night where as pre Tx. was 3-5 Max. Strangely the alarm wakes Me up now. Didn't used to need an alarm to wake up even on weekends!
Appetite is there, just not hungry. Been trying to watch what and how much I'm eating. Actually lost 10 lbs. during Tx. Need to lose another 15-20 to get where I want to be at! Hopefully by Xmas.
Went for EOT viral load assay today. Have to wait until 10-19-15 for results. Then it's off to the races waiting for 12 week post EOT test. The Big Green Monster is still picking away at My subconscious even though I know better. Still!!! Cautiously optimistic thinking about the outcome.
It's been an A #1 mother effer with horns the last month , what with working full time, inventory , unavoidable drama , and all the usual B.S. that comes with a family of five. Doesn't help when Your the go to guy for the wife, kids, grandkids , and at work. The fatigue and exhaustion has been catching up lately, glad the sleep has been coming easier!!!
BTW, this My first post ON THE OTHER SIDE as it were!LOL! Everybody keep on truckin' and gettin' better. Positive thoughts make for positive results!!! Her is to EOT undetected and SVR12 AN SVR24 For everyone out there! We all deserve it!
I'M NOT LAZY, I'M JUST ON MY ENERGY SAVING MODE!
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Welcome to the other side. One foot in front of the other. you will get there. :)
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Tommy, it's great to hear from you again. Sorry your post-Tx negatives are so bad. I had some, but mercifully they are nearly all gone now (knock on wood), so perhaps yours will be much milder next week.
You hold the record for having to wait the longest for a VL result. Did the lab ever reimburse you and your insurance for the one it lost?
It sounds like you're not a bit lazy. Your family and work colleagues keep pulling you out of energy saving mode. Who knows, your sides might subside if people would let you get more rest.
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Hi Tommy. Good to hear from you. Welcome to post-treatment! I too had a pretty heavy experience post-tx: fever, drenching sweat whenever I fell asleep day or night, wooziness and disorientation (sort of like flu but it never developed into flu), weakness and fatigue, and no appetite, which was bad since I had already lost 10 lbs on treatment due to appetite suppression and could not afford to lose more weight. I was pretty much bedridden for the first 6 weeks post-treatment. Weeks 7 and 8 were still rough, but I was able to get up and out a bit. Now at Week 11 post-treatment, I am feeling great (although probably still have some riba-anemia left).
Anyway… my theory all along on my post-treatment malaise is that some aspect of treatment, or of getting cured so quickly and then suddenly having a body/liver without Hep C after 45 years of 'hosting' the virus, left my immune system temporarily overstimulated. All of my symptoms (as well as yours) can be the result of an immune system acting up when there is nothing to defend against. I was tested for various pathogens and possible infections during my post-treatment malaise. Nothing could be found.
You'll get through it, Tommy. And I hope that happens quickly! :)
kim
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Philadelphia, How goes it My AUS-some fellow warrior from down under? Read some of Your stuff, Sounds like You are doing good & are a busy little beaver lately! Glad You are getting back into the swing again. Thought about You the other day when the radio was playing Elton Johns' Philadelphia Freedom. Keep up the good work and keep kickin' them heels up!
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Gnatty, Good to hear from You as well, haven't had much time to spend on the forums lately. Ever the techno-geek with the records and observations , sharp as a tack You are! LOL ! No word from Lab or Ins. Co. as of yet. Thinking about writing a nasty letter to the Lab about it. I may be a peon , but I'm a peon that has been paying their wages & bills For many moons!!!!
Glad You are feeling better. It is so weird that no one seems to co-relate how We are in bad shape all of the time , Yet when someone stubs a toe the world seems to come to an end!!!! HA HA HA!!!! Maybe I need to start prefacing My posts with a warning label and let them read them!! SORRY, still a bit snarky at the moment. Man am I glad I don't have to deal with the Riba Rage I've been reading about. I'm bad enough without any help!!!!
THE THING ABOUT SMART PEOPLE IS THEY SEEM LIKE CRAZY PEOPLE TO DUMB PEOPLE!!!
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Kim, Glad to hear You are doing better. Too bad I can't wish My weight over to You!!! I lost 10 lbs. during Tx. But I still need to drop about 10 or 15 more!!!!LOL. Really not sure how I have been working all this time with so little time off from work and stuff other than sheer determination and will power!
My theory mirrors Yours, My G.I. thinks the same. Unless something becomes life threatening or requires a hospitable visit , Just listen to and heed Your bodies warnings. Other wise it's money spent that could be used elsewhere. But in Your case the peace of mind just knowing was worth it. I truly believe My body is going through a healing crisis of epic proportions!!!! Here is to Your health and well being!
I WON'T BE IMPRESSED WITH TECHNOLOGY UNTIL I CAN DOWNLOAD FOOD!
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Hey Tommy, good to see you "post". I just started a thread and then got so busy living life I haven't gotten back to it. It kind of seemed like the first week or so post treatment for some people is similar to the first week or so on treatment.
Anyway, glad you are doing o.k. even though there's a few rough patches. Smooth seas ahead... I can see them 8)
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Hey Tommy,
I know how you feel!
I feel like crap everyday and have to work.....every...day...
(cept weekends)
hang in there.
Its gonna get better.
dm
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Tommy!
I'm so SO sorry you're having such an awful post tx time. Sending prayers for you upward!
<3
Marianne
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Hey BBC & DM,
Thanx for the thoughts & prayers. Greatly appreciated. I feel almost subhuman today. It's an improvement over the last two weeks though. Just wish I could get back to My usual abnormal self. But, one step at a time right? First day with out a head ache of some kind. Yippee!!!!! Go in on Tuesday for VL assay results. Gnatty pointed out I am the longest running waiter for results since Lab screwed up 4 week test results. That still has not been rectified!!!!! But thats' the past. Looking forward to better days ahead.
DM, I know what You mean. I used to enjoy My job. Been doing it in one form or another for over forty years. Always looked forward to the challenge. Now it's hard just making it through the day. Did You ever get Your test results back?????
Hang in there indeed! It reminds Me of the poster of the little kitten hanging in mid air. LOL
Marianne, Hope You & Percy are doing well and feeling better. You should be past the half way point now , right??? Big ole' Texas SAAAALUTE up north to Alaska for Y'all.
I LOVE MY COMPUTER BECAUSE ALL OF MY FRIENDS LIVE INSIDE OF IT!!!
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yeah, I did finally get my results back yesterday (friday).
Still UND!
I feel so bad , I may go back to Turkey! LOL.
dm
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Man the dog looked at Me like I was crazy when I busted out laughing, I really needed that right now. Thanx. LMFAO!
Great to see You UND. Hope for the same Tuesday when I get My results back for one week after EOT! It's freaking annoying not knowing what My status is after 13 weeks. Even though I am sure that the Harvoni did its' job!
Thanx again for the laugh, I smooth forgot about that faux pas!!!!
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Super news dm! Tommy, you're not alone with your post Tx challenges. We are all thinking of you, your posts are a bright beacon on the forum.
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Man the dog looked at Me like I was crazy when I busted out laughing, I really needed that right now. Thanx. LMFAO!
Great to see You UND. Hope for the same Tuesday when I get My results back for one week after EOT! It's freaking annoying not knowing what My status is after 13 weeks. Even though I am sure that the Harvoni did its' job!
Thanx again for the laugh, I smooth forgot about that faux pas!!!!
You're welcome!
Know what you mean about the wait...my EOT blood draw was actually 2 weeks after EOT!
and then I had to wait over a week to be be told I was UND. Still haven't received hard copies so don't know other numbers.
hang in there bro!
dm
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Tommy,
Sorry you feel like shite, that really sucks. It's challenging the post tx period but it's endured until cured time. One foot in front of the other. It does end. Cal :)
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Philly and Cal,
Hows' the weather down under ladies? We have had a nice respite this week down here on the third coast. Turned the A/C off Friday nite & it's still off as I am posting. Sure makes it easier on the old body & brain that is for sure. It sure is funny that folks don't see that You feel bad on the inside , so they assume You are just fine. I have had to lay back a little the last couple of weeks to charge up the ole' batteries for the next days trials & tribulations , but I am trying not to let it get to me.
I am so glad that I am in the minority with My Sx's compared to most on Tx. I cannot imagine what the Tx. from the old Meds. did to people. But I will not dwell on that as I await My Lab results tomorrow. Getting a little antsy with the waiting!!LOL!!
Philly, You are an inspiration ! As I have been catching up on Your odysey , it seems You can't keep a good girl down!!!!!
Cal, How have You been holding up? You still have control over My phone by the way!!!!LOL. I might have to call Marianne to get Percis' help on that one.
Here is to both of You guys health & well being. I am going to keep on trucking and hangin' in there ( or out there ) flappin' in the breeze like a freshly washed shirt on the line!
WHEN I AM BORED, I SEND A TEXT TO A RANDOM NUMBER SAYING " I HID THE BODY......NOW WHAT?"
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WHEN I AM BORED, I SEND A TEXT TO A RANDOM NUMBER SAYING " I HID THE BODY......NOW WHAT?"
So that was YOU Tommy. I should have known. Too bad I didn't know before I changed my name and left town… ;)
kim
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Hi Tommy.
I'm kicking and gouging on that extra riba dose. Bit fidgeting, speedy, headachey, riba rash gone bonkers. But other than that I'm peachy thanks. Cal 8) 8)
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Kim, I am almost totally innocent I swear!!!! WINK WINK. Got some ocean front property for sale out in West Texas I can sell You. It is all just a teency weency lil' misunderstanding officer.
Cal, I have a spare bunk in My rubber room and Perci let Me use His Tye Dyed straight jacket!!! Just don't let Marianne find out!!!!!
WHY ARE THERE NEVER ANY GOOD SIDE EFFECTS??? JUST ONCE I WOULD LIKE TO SEE A DRUG COMMERCIAL THAT SAYS---MAY CAUSE EXTREME AWESOMENESS!!!!!
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I think they could say that about Harvoni. I saw a girl on another forum say the only side effect she was having was a big smile on her face! :)
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Tommy,
I have my own floral straight jacket, been dying to wear it :P cal
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Tommy,
I have my own floral straight jacket, been dying to wear it :P cal
Do you have a hat that matches it? Shoes?
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Bree,
How can you ask? I'm a shoe and bag girl. I live in Brisbane hats are mandatory against our sun. Yes I have matching shoes, bag and hat. I think I may have a scarf too, but they may not let me take that into the rubber room? hehe Cal :)
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Dang, You guys have it made in the shade. The only accessories for the Guys are Chrome Wrist and Anklets with chains attached!!!!!! Well there is that funny little mask they gave Me once!!!!!!!!!!LOL
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GOING BAT SHIT CRAZY HERE AGAIN!!!! Fourteen weeks not knowing My viral load since before treatment! I know, I know. Don't sweat the small stuff. The Meds have done their thing. It's just driving Me up the wall not knowing after seeing everyone elses' results. That little monster deep down in My brain keeps casting doubts & won't let Me give it up!! It's weird to obsess over things that are out of our control!! That is just Human Nature. I have to wait until 3:oo PM to find out. I swear if the Lab screws this one up I am going right downstairs & give 'em hell. Maybe I better go smoke a cigarette and calm down. Don't leave work for another 1/2 hour , then traffic , road construction , & inept drivers on the Freeway all the way to the Dr.s' office!!! There, I already feel better after venting. Sorry to ramble , but right now I feel much calmer. Sorry Guys.
SOMETIMES I PRETEND TO BE NORMAL BUT IT GETS TO BE BORING.SO I GO BACK TO BEING ME!!!!!!
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So just a few hours!
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1 HOUR AND 9 MINUTES AND COUNTING DOWN!!!! LOL
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I HAD ALL I CAN STANDS AND I CAN'T STANDS NO MORE!!! I AM OUTTA HERE!!! YUK YUK YUK!!!!
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I must be one of the lucky ones. I did 24 weeks of Harvoni with minimal side effects. My end date was 8/10/15. I really don't feel that bad now aside from age and normal aches & pains. Have been SVR the whole ride. My 12 week EOT blood work will be the 1st week of November. It's time to take the Life off Pause and begin living again.
Here's a hope that this disease is eradicated once and for all. Hopefully, future generations will look back on Hep C as we do Polio.
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Hands are shaking, My mind is going 90 MPH. DRUM ROLL PLEASE!!!!!!!!!!!!!!!!!!!!!!!!!!
ONE WEEK EOT BLOOD WORK RESULTS ARE IN AND THE WINNER IS---------MEEEEE!!!
HCV RNA VIRAL LOAD NON DETECTED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
HCV RNA Log 10 <1.2 IU/ML!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Yes Margaret there is a Santa Claus. Now I can relax a little as the adrenaline rush subsides!!!!! What a long strange trip it's been. I don't know what else to say or think at the moment. LET'S DANCE EVERYBODY!! THE CONGA LINE STARTS ON THE RIGHT!!!!
BE A FRUIT LOOP IN A WORLD FULL OF CHEERIOS!
P.S. No spell check on this post.
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Dang, You guys have it made in the shade. The only accessories for the Guys are Chrome Wrist and Anklets with chains attached!!!!!! Well there is that funny little mask they gave Me once!!!!!!!!!!LOL
Well Hannibal,
At least your accessories suit you. I'm terrible in floral. Hehe cal :-*
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Well done Chino,
And great to hear. That's not too far to wait. You seem like a calm person, I wish I was that laid back about tx and whether I'll SVR etc. you're lucky if that is part of your make up. I've always been a drama queen! Cal :)
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Go a Tommy,
Amazing! Virtual Congo line, come on gang join in.... Cal 8)
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Yea for Tommy!!!! You deserved an answer!!!! And the right answer!
You had to endure a lot of patience during your treatment just to know.
My granddaughter and I were dancing to "Everybody Dance Now" on Friday...
That's a great song! Great video: https://www.youtube.com/watch?v=LaTGrV58wec
I'm so happy for you 8) Bree
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Hands are shaking, My mind is going 90 MPH. DRUM ROLL PLEASE!!!!!!!!!!!!!!!!!!!!!!!!!!
ONE WEEK EOT BLOOD WORK RESULTS ARE IN AND THE WINNER IS---------MEEEEE!!!
HCV RNA VIRAL LOAD NON DETECTED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
HCV RNA Log 10 <1.2 IU/ML!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Gnatty, OOOOH pretty colors!!! I love it. How are Your My Dear ????
Bree , YEEESSS, My patience was rewarded ten fold!!!! Dance on!!!
Cal, By God I think Hannibal & I need to learn the Conga! Hey Senator, Love the suit!
Thank Ya'll
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Hey y'all!,
Way to go Tommy!!! Couldn't happen to a nicer guy! Would've lost what's left of my mind without you, Cal, Julu, Bree, Gnatty, Kim, so much owed to Philly! And, especially Lucinda for making a place for us all to join up and support each other...
Joining Tommy's conga line with Cal & Percy too :), just don't get upset if I, (or a reasonable facsimile of me), loses it for no reason and starts either screaming or crying..., k? :;D 8) 8) 8) 8) 8)
<3
Marianne
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WHAT??? You have mind left??? I'm still looking for mine. After I got the test results back I took it out to play & lost it!!! Now when I shake My head there are no marbles to rattle around.
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Lol Tommy!
My hubby and I were just guessing there were only about two marbles left up there :D
Great lost minds think...uuuh, hmm?, bubblegum,FACT!, bears eat beets, Battlestar Galactica :P :o :P
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Bears look like Wookies , but beets don't look like R2D2!!!! I thunk once therefore I was_____ Uhh something!!!
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Bree,
Great song. If you can dance to that you are doing really well! I'm still laying down and breathless etc. I guess it's the ribas again! Cal :)
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Tommy, Hannibal, Marianne (or hologram) and Percy.
Conga line yeah baby! Join in everyone.....cal 8)
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Marianne,
You've got more marbles than me, it's not fair! Hey marbles procreate all by themselves, you'll be back to normal soon. Not long now Chickee babe! Cal :) :)
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Just heard the great news!!!! Three cheers for Tommy!!!
Can't believe you had to wait all that time. Sweet! Keep those result around and look at them every time you get bummed.
woohoo
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Got word from My G.I. that he wants to do a HIDA scan of the old gall bladder. Something to do with gall stones he is worried about. Wants to wait until after 12 week EOT labs to do it. I.m gonna ask Him about doing it earlier since I'm caught up on deductible & out of pocket expenses for this year. 12 week EOT won't be until mid January , 2016. By then I will have to start over again for next Year. Pockets are kinda empty at the moment.
Any thoughts on the matter Y'all???????
Been feeling alot better the last couple of days. Headaches have eased up. Still get a rush when I look at that NON_DETECTED on the Lab report. Still have some joint aches & pains. But , what the hell. UNDETECTED pretty much trumps that!!! :P :P
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EOT is wonderful, but another chapter in the long saga of transitions for us heppers. All optimism aside, EOT does bring some new challenges. I am week 3 and am amazed at the aches and pains that came with ending the therapy. I did not have a lot of muscle and joint issues before starting and only a tolerable and fleeting amount during tx. Nothing debilitating but, it is like just became "old" overnight. Also, I had pretty good energy through tx with a few bouts of fatigue. Since ending I seem to have a bit lower energy factor going on...fairly consistently...yet again...not to a troubling degree. If I had not been on this forum and heard of the post symptoms from others, I might be a bit more concerned. The pre-results anxiety is maybe worse than during the treatment, because on treatment it seems like everybody is getting results. I speculate (and not alone in this assessment) that the immune system is finding itself and vacillating between over and under active. I personally believe that it (immune system) is also taking care of "other" business that it could not deal with when it was facing trillions of new copies of them little boogers hourly and 24/7.
I guess however, that the bliss of ignorance could be a saving grace for some who avoid information and forums. Here, we all support each other and there is plenty of good news and reports...but we also must endure the downers. It is difficult to hear of treatment failures on many levels. Yes it makes us worry that we could find ourselves in that camp, but even worse is the pain we feel for our brothers and sisters who might relapse. Instantly, we can imagine after all of the years of rejection, stigma, failed cures, disappointments, fears and uncertainty how it must feel.
We are all in this together. We are truly happy when the words undetected pop up on a post of another. Our connection is inescapable. If we are cured in the end, our battle is not over until everybody with hep all types and biotypes are cured or on their way. We are truly an army, one body of a common goal, not just a collection of individual needs. Long live Hep-forum...SVR to all.
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Got word from My G.I. that he wants to do a HIDA scan of the old gall bladder. Something to do with gall stones he is worried about. Wants to wait until after 12 week EOT labs to do it. I.m gonna ask Him about doing it earlier since I'm caught up on deductible & out of pocket expenses for this year. 12 week EOT won't be until mid January , 2016. By then I will have to start over again for next Year. Pockets are kinda empty at the moment.
Any thoughts on the matter Y'all???????
Been feeling alot better the last couple of days. Headaches have eased up. Still get a rush when I look at that NON_DETECTED on the Lab report. Still have some joint aches & pains. But , what the hell. UNDETECTED pretty much trumps that!!! :P :P
Don't know about the scan and what's best there but I'm having a photodynmaic treatment (pdt) this week (blue light therapy) on my face. I tabled it till after treatment... it's not urgent and probably not as invasive. I know I have insurance to cover it now and may not have in a couple of months... I am not anxious to tax my body but I have it covered now so trying to get all this medical stuff over with. I know it's apples and oranges but I understand about med coverage and also deductibles. It matters how we make decisions.
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EOT is wonderful, but another chapter in the long saga of transitions for us heppers. All optimism aside, EOT does bring some new challenges. I am week 3 and am amazed at the aches and pains that came with ending the therapy. I did not have a lot of muscle and joint issues before starting and only a tolerable and fleeting amount during tx. Nothing debilitating but, it is like just became "old" overnight. Also, I had pretty good energy through tx with a few bouts of fatigue. Since ending I seem to have a bit lower energy factor going on...fairly consistently...yet again...not to a troubling degree. If I had not been on this forum and heard of the post symptoms from others, I might be a bit more concerned. The pre-results anxiety is maybe worse than during the treatment, because on treatment it seems like everybody is getting results. I speculate (and not alone in this assessment) that the immune system is finding itself and vacillating between over and under active. I personally believe that it (immune system) is also taking care of "other" business that it could not deal with when it was facing trillions of new copies of them little boogers hourly and 24/7.
I guess however, that the bliss of ignorance could be a saving grace for some who avoid information and forums. Here, we all support each other and there is plenty of good news and reports...but we also must endure the downers. It is difficult to hear of treatment failures on many levels. Yes it makes us worry that we could find ourselves in that camp, but even worse is the pain we feel for our brothers and sisters who might relapse. Instantly, we can imagine after all of the years of rejection, stigma, failed cures, disappointments, fears and uncertainty how it must feel.
We are all in this together. We are truly happy when the words undetected pop up on a post of another. Our connection is inescapable. If we are cured in the end, our battle is not over until everybody with hep all types and biotypes are cured or on their way. We are truly an army, one body of a common goal, not just a collection of individual needs. Long live Hep-forum...SVR to all.
I'm with you Beto. I feel exactly the same way. The only thing that keeps me going is (like you said) reading about others going through the same thing AND it also the exact same way I felt after my first tx. It lasted a good 4 months. It really surprised me at the time. Seems to be a common theme.
dm
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Tommy I missed your fantastic news. I am so very happy for you. Gall stones often go hand in hand with HCV. I have them too but we have an agreement that I leave them alone and they'll leaveme alone. The moment they start to bother me, they're gone.
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If I haven't said so already… CONGRATS TOMMY on your UND!! Keep on truckin' (or bikin' as the case may be). ;)
kim
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Don't know what just happened. I was keying a rather long reply & the screen blinked & it was gone >:( >:( >:(
Oh well, the fingers are willing but the brain ain't able :P!
Kim, Philadelphia, Bree, DM, Beto, Thanx to all of You guys for the posts & thoughts. The old pea brain just ain't clicking today or I would try to replicate My ranting post that I lost.
I was trying to say The forums are the best bar none. I have a wee bit of pea soup brain fog going on at the moment. Mere mortals cannot fathom the things we heppers go through on a day to day basis , much less the stress & anxieties involved in our lives . Things that are tattooed on our Psyche for ever.
At the moment I am suffering from OLD TIMERS SYNDROME , so I will log off and bid You all goodnite and wish SVR to everyone. ;) ;D 8)
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Perfectly said Beto.
Tommy,
Make your case to your Doc. They understand the end of the year financial thing almost as well as we patients do.
Marianne ;D
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Tommy, "old timers syndrome" is a real side of EOT. A few of us have observed that we kind of wake up one day all achy and a cruddy memory. That occasional sharpness of mind and lack of brain fog that fleeted by during harvoni highs, bite the dust again...welcome to EOT senility Tommy :) :) :). let the senior games begin. Never a dull moment in the quest for SVR. Oh yea, and remember the anxiety attacks before results...you though they were bad during tx (insert evil laugh here).
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Oh yuk!
I am looking forward to EOT but not this post tx RIBA crap again. Don't we suffer enough? I don't want to be anxious ( and I know I will) and I am so sick on this tx, my brain has become clear and I don't want to give it up again! Cal ::)
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No worries Cal...you will sail right through ;)
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My two cents. Try not to project post side effects, you never know. Take it as it comes. You might be pleasantly surprised :)
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I didn't find post treatment sx became worse Cal. I felt much better.
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Hey Cal,
I was kinda joking around with Tommy. I mean I have been a bit fatigued and achy and older, but it is really nothing...and my angst is actually subsiding. I need to be aware that posting is like emails...it's OK to kid around, but missing the body language and voice inflections...a happy face sorta helps. You are going to be totally fine after.
I'm OK with some of the sides...I understand they are temporary.
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You're all absolute darlings. I couldn't feel more supported and cared about, thank you.
Don't worry, I was kinda fooling around too. I have been through post tx before, so I can't help but project. It is what it is. I'll take it as it comes. Meanwhile I'm throwing everything at tx. Thanks for your kind posts though. Cal :)
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WARNING! POSTINGS ON THIS THREAD ARE NOT THE SIDE EFFECTS EXPERIENCED BY THE MAJORITY OF PEOPLE TREATED FOR HEPATITIS C! THEY ONLY REFLECT THE MINORITY ( 2-3 % ) OF THOSE WHO HAVE EXPERIENCED MORE DRASTIC SIDE EFFECTS OF THE TREATMENT!
PLEASE DO NOT LET THE OPINIONS AIRED HERE IN ANYWAY DISCOURAGE OR KEEP YOU FROM GETTING TREATMENT. JUST REMEMBER THAT 97-98 % HAVE LITTLE OR NO SIDE EFFECTS RELATED TO TREATMENT. PRETTY GOOD ODDS I THINK!!!
OLD FARTS LIKE MYSELF ARE PRONE TO BE OPINIONATED AND PUT IN MY TWO CENTS WORTH WHETHER YOU ASKED FOR THEM OR NOT. I IN NO WAY INTEND TO SPEAK FOR THE MASSES WHEN IT COMES TO THESE AMAZING AND WONDERFUL MEDS. AND BREAK THOUGHS THAT ARE CREATED BY THEM. I CAN ONLY WISH AND HOPE THAT ALL CURRENTLY ON TREATMENT AND THOSE CONTEMPLATING TREATMENT WILL HAVE SMOOTH SAILING AND CALM SEAS FOR THEIR JOURNEY THROUGH HEPLANDIA!!!! MY PERSONAL EXPERIENCE IS JUST THAT!!!! MY EXPERIENCE!!!!
BTW, I have been in the fog since Friday. Low grade fever, stomach ache , calf muscle cramps , general all around feeling like crap. But not bad enough that I can't handle it. Just makes me want to lay up & do nothing. Glad it's rainy outside , that way I get a reprieve.
Over all I don't want to give any one the impression that I am bedridden or debilitated by all of this. Just feel like Shit in general. I have not missed a day of work during or post treatment. Other than taking a couple of hours off here and there for Drs., labs, tests. & a couple of Migraine no work missed. It's been rough. But personally I stick it out and do My best. I refuse to give up or roll over. I HAVE My good days as well as My bad days.
I AM SLAYING THE DRAGAON. I WILL LIVE UP TO MY AVATAR AND PERSONAL MESSAGE. HEP C BE DAMNED.
UH-OH, getting a little wound up there as the fog begins to lift. (insert demonic grin and chuckle here!!)
Hope everyone is feeling good or better, whichever the case may be.
Old people at weddings used to poke Me and say " Your next "!!! So , I started doing the same thing at funerals!
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Tommy,
I would imagine that more intense (or different than reported) side effects are more common than 2-3 percent. Whatever the case, the listed side effects are not only the most common, but also the easiest to report. A headache is just that and diarrhea just that. however, the more subjective side effects either go unreported or end up in an approximate category. I personally can't even describe some to the symptoms I have had pre...during...and post. Symptoms are even more difficult to express than pain. The old 10 point scale for pain is pretty in-exact but really all we have. There are perhaps several distinct feelings folks might have, that are all described as "dizzy". Anyway your experience is your experience and it is real. I feel bad that you have to go through it, but I also know how tough you are. This is an open forum and we are guinea pigs to an extent. More side experiences will be reported over time. Lots of folks are having a rough post. Even I have had weird stuff.
Besides, funerals :) can be fun
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HELLO ALL YOU FELLOW HEP C WARRIORS OUT THERE AROUND THE WORLD ;D ;D ;D
Finally coming out of the fog I was deep into over the weekend! Some body turned on the lights , It must have been Little Miss Sunshine Bree. How are ya girl? Need a dose of sunshine after three days of constant rain here in the ole' U.S. of Texas! Hope all are well & kickin' butt out there.
Marianne, Yea I called the G.I. to see if He had a reason for waiting until next Year for the scan , if not let's do it now & get it over with! Waiting on the call back. As usual , hurry up & wait! :P :P Haven't messed with You lately, Is all well up there in the North Country? Been cleaning Your Igloo lately? ;D ;D ;D
Philly , Doing some research on what the HIDA scan involves & what happens if the results come back bad. Been checkin' out Your blog off & on. One question??? Is that Your lovely little ear in the Pic.??
Kim, Great to hear from You. Hope You are taking care of Yourself as well as all of Your little flora & fauna buddies.
Beto, What can I say? A headache is a headache unless it's a Migraine. Diarrhea still sucks, But explosive Diarrhea , well that's a different story :P :P :P :P :P!! Picture this for the Senior Games. A 20 yard dash with souped up walkers. All mag wheels ( no tennis balls here ) Dual calipers brakes , cup holder , folding seat for resting the ole' body with under seat storage for the essentials ( padded of course ) and to top it off!!! Wait for it---- an OOGA horn & sick flame job to top it off 8) 8) 8)
Cal, How goes the Trials of the Viekirans???? Hope You have been feeling better.
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A sick flame job on your chair? By god, there goes a Texan! 8)
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No by God it's a walker ;D ;D ;D ;D I ain't ready for a chair YET ::) ::) ::) ::) ::) How Ya doin' Else? You should be about 2/3 done with the ol' diamonds right? Hope you are doin' good & feelin' well?? That avatar still throws Me! LOL!
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Scout???? Where are Your lurking???? I keep missing You! Doin' all right I take it. How is life treating You?? Gimme some good news, I could use it!!!
JUST POPPED IN TO LURK AWHILE! ;) ;D :o 8) :P :-X
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My apologies, Tommy. My vision's not quite right lately. That and I can't say w-w-w-w-walker! :o
I'm all bent over the latest goings on on The Walking Dead. Seems as if the walkers might have killed Glenn. (or did they? ???)
Until I can figure out how to change my avatar to one from the interwebs (preferably Carol of said Walking Dead fame) I'm stuck with my surly boy rapper. heh
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Glenn is toast and rick got bit
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No, I think Rick's folding knife wasn't locked open - good way to cut yourself. If that was a bite Rick would have lost a paw by now. Karma, when you think about Merle.
Ahem, I'm in la-la-land. :o Geez, exactly 1/2 way outta the diamond mine tomorrow, Tommy.
p.s. Beto - you realize someone fell on Glenn, right? Never say never. He's always been the cat with nine lives.
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No, I think Rick's folding knife wasn't locked open - good way to cut yourself. If that was a bite Rick would have lost a paw by now. Karma, when you think about Merle.
Ahem, I'm in la-la-land. :o Geez, exactly 1/2 way outta the diamond mine tomorrow, Tommy.
p.s. Beto - you realize someone fell on Glenn, right? Never say never. He's always been the cat with nine lives.
No spoiler alerts you guys!!! I haven't had a chance to watch Sunday night's episode!!!
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Hey Tommy - I go walking with my dog early each morning. Well semi-early, I'm usually out the door by 6:30. That's me attempting a selfie one morning. 6:30am and I needed a hat and a singlet top. And I was sweating. Yes that's my ear.
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Yo Philly,
Just read your blog. You know I recall you 1st posting it, but I guess I had just looked at the pictures and blew off the words...hehe. Must have been rushing...I do recall commenting on the beautiful pastoral settings. Anyway you brought up an interesting analogous symbolism that resonated with me. And that is the quixotic idea of our glorious quest. I feel like I have been tilting at windmills throughout my quest for health and understanding. It would seem that maybe there is a little Don Quixote in all of us and perhaps that is why we are all still alive and fighting. As was the case with most of us, the original information, at the time most of us were diagnosed with hep C was that: we might look into "putting affairs in order" not to far down the road. I refused to believe that and one day perhaps I will tell my own story.
Would love to hear more about the meeting in Australia. Not crazy at all to travel 600 miles to see your hep peeps. I think we all need to get together in Hawaii at Kim's house and Tommy can grill gator and Marianne can make the biscuits and so on :).
Glad you are back to your crazy workaholic chops...but...maybe you take it a little easier this time around. Getting a little better each day with some set backs seems to be the norm for us. I will report that yesterday I noticed (while at the gym) I was suddenly stronger and could lift more. The weight amounts that I had been using forever, seemed light. Interesting because I have been doggedly going to the gym for years and my muscles just would not advance much. This is because my liver could not sufficiently build the proteins necessary...but I alway showed up like Don Quixote...tilting at the weight machines.
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Hey Beto, it's Bree who lives in Hawaii. I say, yes, let's all meet here! 8)
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Hey Bree...maybe I got you and kim mixed up. Truly the most central place would be Hawaii. Given all the aussies and yanks. A bit far fetched but, would be fun. Not too many folks can just pick up and go to Hawaii and leave jobs and family to see what's up with the hep peeps. So of course I am half kidding. I have a brother and nephew and niece in Oahu, Kailua side that I need to see...but, realistically...well...We never expected a cure either.
Fun to speculate anyway...OK your house. Don't bring poi though :)
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I'm up for Hawaii (even though I live in a forest). Let's do it! Half in jest, here. But I would try to get my butt there if others are game. I have never been to Hawaii.
kim (intheforest) ;)
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No worries on the poi... Not my thing. It would be cool if we could all get together in Hawaii! I live on an outer island although I'm in Honolulu today or tomorrow. 8)
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Bree,
I'm coming to Hawaii to see you I promise, get that spare room sifted! Cal :)
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Tommy,
You asked me how I was. Bloody ill. I was put up a RIBA and it's having it's evil way with me! Cal :)
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Beto, I've always pictured you as a mad, medieval Spaniard.
I would happily travel to the most remote chain of islands on the earth (really! technically speaking, they are!) to meet any or all of you. :) Bree, should I bring ice?
Hang in there, Cal. :-\
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Else you pictured correct. I will sing the Impossible dream karaoke.
Kim- Yea, why was I a thinkin' you were the Hawaii one? You live in a dalburn forest.
Cal- So sorry...If we do this Hawaii thing maybe we can curse the evil riba god Hawaiian style.
Of course my son is moving to Texas...maybe texas...
dudes...meeting is a pretty out there Idea...but you never know. Maybe Gilead can pay for it...it would be great advertizing if we chronicled it :) :) :) the cost of one harvoni is an airfare.
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Hey stuff the Ribas!
I'm coming to Hawaii to party! (Gently) ::) Cal
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Cornbread and iced tea took the place of pill and 90 proof :P :P :P :P :P
Hank Williams Junior.
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Well here I am playing the waiting game once more. Three weeks & three days Eot. Waiting until Jan.11, 2016 for 12 week Eot blood work, until Friday for the HIDA gall bladder scan , waiting for the fatigue to let up , etc. etc. ::) ::) ::)!! Overall I have been feeling better. Sleep is so much better that I can't believe it. Still getting the headaches just not as bad. Still dealing with lower G.I. issues. The most prevalent and annoying is the lower back and joint pains. Brain fog has let up big time, But concentration is lacking. Get side tracked extremely easily. Slamming water as usual but seem to feel dehydrated most of the time.
Wanting to head to My place out west for some R & R but lacking funds to do so. Feel I need some alone time to recharge the old batteries. All the fair weather buddies seem to have vanished when most needed. But , I am used to that. I'll just have to figured out something. After all I need it, and it's long over due. Besides I need to see how long I can do a solo without going stir crazy. It has been a couple of Years since I have done it. Pack it all in , pack it all out. No electricity or running water. Cell phone for emergency. Just the basics. Food, water, propane lantern & stove. A few cigars. Kind of like Church , just Me, Mother Nature, and the Big Guy Upstairs. Oh yeah , the stars are something else. No city lights close by to deal with. Light a camp fire and a cigar kick back and stare at the night sky. Very peaceful. Man I wish I could head out right now.
Oh well, the time will come soon. Here is to all You Happy Helpful Heppers around the world out there fighting the good fight one battle at a time.
BE HAPPY, BE HEALTHY, AND ENJOY LIFE ONCE AGAIN. ANY DAY THAT YOU CAN SMELL THE FLOWERS INSTEAD OF STARING IT THE ROOTS IS A BEAUTIFUL ONE 8)
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Hey Tommy sorry to hear you are still dealing with the annoying sides.nice that you are sleeping well...half the battle is resting the old carcus!!!sorry!camping out under the stars will be great when you get there...for now just thinking about it is relaxing ...all but that cigar!!!sorry again!Today I had the epic battle with Florida blue who are immoral bastard's that left the decision about my Harvoni scrip to a gal named Lakeesha.not sure if she has medical background but she sure doesn't like being accountable to a 17 page appeal that says URGENT from Mayo Clinic.They finally gave me her name & voicemail so I made sure to fill it with one big ass message.It started professional & very polite from my bullet points.then my emotions took over & it was academy award worthy.The fallout was after 2 denials for continuation of my tx..they agreed to peer review with my Dr.one hour later!! I should hear tomorrow...too many relapses on 8 wks ...fighting hard just took last pill for now ..fingers crossed for us all .Hang in there Tommy ...you are gonna feel good tomorrow!
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Way to keep after them Rosie, hope all goes Your way, You deserve it. Stay the course and keep fighting them. The old body really likes the good sleep, but I wear down mid afternoon at work. I really don't know how I've worked full time all these years without time off except for vacation time. I have everything possible crossed for You. Let us know how it goes.
Hope You are feeling and doing well. Thanks for the shout out. BTW, the smoking is My only vice left and I am working on that!
THE MAN UPSTAIRS NEVER GIVES US MORE THAN WE CAN HANDLE! HE ALWAYS GIVES US A SECOND CHANCE! IT IS CALLED TOMORROW!
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You're in my thoughts, Rosie. Sending you positive vibes for your appeal ~ ~ ~ ~
Tommy your getaway sounds heavenly. Makes me miss my cattle dog. He loved trips like that. Best companion a gal could ask for.
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Hey Tommy, et al. Just catching up with the forum a bit. I was in Honolulu these past two days (not for play, unfortunately, another medical thing, knocked the wind of my sails, not serious, but wanted to pack it in while I have insurance).
Tommy that retreat sounds awesome. Makes me think I should go camping here and I'm more of a room service kind of gal. I have managed to keep my circle of friends close and let the acquaintances go. Just no time or energy for superficial relationships and I really guard my self time.
Rosie, good for you to stand your ground! I just know things will work out well for you. You remind me of me and the lengths I went to get treatment.
Now, for Hawaii... loved reading the posts about that. Cal your room is ready anytime! And, I have a friend who does a Hawaiian chant to the ancestors. Wouldn't it be neat to have her do a chant for healing for us...and for everyone!
Else, no need to bring ice - we have ice here if needed :) Beto, it would be neat if we could get someone to pay for it... hmmm.
Kim, everybody... it would be so cool. We have excellent hiking here, and best beaches, I am on a smaller island (most beautiful) I'm biased probably. If we got serious about this, say next year, I could figure something out for us. Just sayin'
Have a fab weekend yall! Bree
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Thanks Tommy for the quote about tomorrow.I got really emotional reading ....not saying you shouldn't do cigars tho ...I just tried one once & it didn't go well!
Else & Bree, just love the support ...Hawaii sounds just the best right now but next year when everyone has been cured ...too perfect for words.the chant would be other worldly ...I'm dreaming now right?
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If anyone on this forum is a writer...... A trip to Hawaii after treatment to meet folks that got close on a forum about a life threatening disease sounds like a best seller!Its something so dear to be able to type about stresses of treatment &help & encouragement comes rushing in from multi timezones...crying now but happy tears
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Let's see here , Hawaiian ancestral chants , maybe some Didgeridoo action from the Awesome Aussies, a little Cowboy guitar serenade under the Moon & Stars, an American Indian Medicineman, sounds like an all niter what with the dancing & all!!!!
Rosie, Hope it was GOOD emotions!!! Probably shouldn't do the cigar thing. Don't know what kind You tried , but there are more varieties than Hep C treatments available these days. If You get the chance find someone versed on the Nuances of a good cigar. Have them recommend a small ring gauge, dark (or maduro ), mild tobacco cigar. You can even get cigarillos which are tiny cigars! Flavors are an option also, although Purists will flip out! LOL! STRICTLY FOR OCCASIONAL USE AND ENJOYMENT ONLY!!!!!!
Bree, I thought I saw a ray of Sunshine peeking through the clouds!!! How are You? Hope Your Medical thing went well. ROOM SERVICE ??? ??? ??? ::) ::) ::)? I wish! LOL! Fab indeed. I haven't heard that in a while. Not trying to occlude Your sunshine , but it's rainy again this weekend. I kind of like the rain as long as it ain't a damned HURRICANE!!! Peaceful , relaxing , and rejuvenating!! The old circle of life thing!! Besides I don't like drought!!!!!LOL!
Else, Never have figured out why dogs are always MANS best friend. Sounds kinda sexist to Me ( Coming from the ex-biker redneck from sexist central here in Texas!! ) It reminds Me of a huge ( 110 Lbs,! ) German Shepherd I had years ago, His name was Snapper and the kids used to ride him like a horse. Kinda like the Mutton Busting You see at the Rodeos for the little ones. I wish I had pictures or videos. They used to used him as a pillow at nap time. Best damned dog I ever had. Never so much as growled at any kids , But if You messed with them or they got hurt or were crying , I was about the only one who could get by Him . He was that protective. Never hurt anyone but his growl & barked would scare the shit out of grown men. Oh yea, and He ate like a Horse!!!
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Tommy,
So sorry those little bleepity bleeps are being cruel to you still and Cal, me and so many others :( Not much of a hater, but BOY do I HATE them and wish there was a way to literally stomp them to death and set them on fire... (I know... sorry folks, just a little riba rage left over from my psycho crisis :)
Rosie,
Bless your every need and sending prayers up you get your win <3
Hawaii, oh how I love you! Mixing Bree, Cali, Tommy, Else, Rosie and everyone else that's rolling through this delightful fight would be Heaven on Earth!... LOVE that idea!!!
(((HUGS))) to all y'all you're the best!!!
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Hey Gnatty, LynnK, Phil, Lucinda!!!! I seem to remember some posts about How Long It Takes Harvoni ( Ledipasvir and Sofosbuvir) to clear the body. I remember & found some posts that referred to it being 2-4 days for Ledipasvir and 1-2 days for Sofosbuvir to clear the system. And 2-4 weeks for the residual to excrete. Doing a little research into it and was hoping some of You techno-geeks and more highly informed forum Pals could help with some stats or links on the subject.
Thanx in advance before My computer craps out or the inter-web goes down! LOL! :-\ :-\ :-\ . Weather is pretty crappy around here at the moment , so I don't know how long My connectivity will last :o ??? ::) :P
HERE IS HOPING ALL IS WELL AROUND THE WORLD IN HEPLANDIA FOR EVERYONE!!
SHHHHH!!! BE VEWY VEWY QUIET! I AM HUNTING DWAGONS. Damn Saturday morning cartoons are effecting My brain! :-[ :-[ :-[ :-[ :-[ :P :P :P :P :P ::) ::) ::)
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HEY HEY HEY Marianne is back ;D ;D ;D ;D. Hope You are feeling better!! Rage on My dear, don't hold it in!!! Mu bleepity-bleeps aren't squat compared to You and Cal, and many others. Don't stomp them , use a big hammer. Don't want to hurt Your foot. Man I would love to start a big ol' bonfire to fry up some Dragon for You!!!
No Psychosis, just a Psychosomatic Manifestation pertaining to Your Fear of Dragons and the eradication side effects thereof! Man I can't believe Perci didn't fill You In on that crap. Me and Hannibal are going to have a little talk with Him over a VIRTUAL Chianti and some Fava beans :P ::) :o >:( 8) 8) 8) 8) 8)
Gotta go, lights are flickering again!
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"All the fair weather buddies seem to have vanished when most needed. But , I am used to that."
Tommy...you don't need no stinking fair weather friends...you got all us sweet smelling foul weather friends...and we are much funnier. I am a bit of a loner these days...that why I clocked 72 hours kibitzing with all you foo's. "Cwazy wabbits". Dude enjoy your cigars.
Rosie- In the middle of my forth denial I wrote a letter that floored a few folks at the insurance company and beyond. Keep up the pressure. I now wished I had pushed for more time on harvoni. What these folks, who's job it is to play hardball with us happy heppers, don't understand is; if we relapse we find ourselves in in a difficult situation. The problem is, we are not seen as people...we are "insureds". let the emotions fly...it gets results...hehe
Bree- Yea...half serious. Big opportunity for Gilead and Big Pharma, "hep C survivors unite in Hawaii paid by Gilead" One BBQ a camera follows us around clammering about how lucky we are...bla bla bla. Then we set aside a couple of days to party down yo. Great PR for Pharma and big fun for us. These forum pages are packed with "heart felt" stories and accounts...a lot of material here. tee hee.
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Beto ,
Did You say foul smelling sweet weather fiends? :D I know about the loner part, been that way most of My life, never have been able to put up with the status quo or hold My tongue when faced with all the B.S.! Trying to break that habit. Wish I could enjoy a nice Cabernet or three fingers of Jack Green label with those stogies! ;)
But we all know that ain't gonna happen! :'( :-X :P :( >:( ;D 8) 8) 8)
I think Gilead should subsidize the trip to Hawaii as scientific research pertaining to treatment and obtaining updated info. so all can have clearer info. about the Meds. and true unadulterated stories about what really occurs during Tx.! Might as well get the other Drug companies in on it to help defray the cost too. I might need some Meds. to help keep Me in check though!LOL.
WHAT A WONDERFUL WORLD IT WOULD BE IF EVERYONE WERE HEP C FREE 8)
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Hey Yall... Beto, Tommy, this concept might be in the realm of possibility.
What if...let's say a dozen post treatment Hep C people came to Hawaii and did a documentary. We could have a few group sessions on camera talking about... what it means to get treatment, the process of getting treatment (insurance, etc), being on treatment, post treatment and then what it's like to be cured. The good, the challenges, the health benefits and ultimately the process of freedom.
It doesn't have to be a commercial but a documentary and could be used to sway insurance and government to move toward making treatments more readily approved for everyone. It would be in, let's just say, the powers that be, best interest to subsidize this effort even if quietly.
Beyond that, we could have our own separate special times together.
I have experience as a facilitator, I could even get the camera crew over here.
I'm not ready to reveal which island I'm on for anonymity at this moment, but let's just say it's known as a healing island.
And, if this turns into a serious discussion, I think we should take it "off forum" to discuss. Food for thought....
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Hey Gnatty, LynnK, Phil, Lucinda!!!! I seem to remember some posts about How Long It Takes Harvoni ( Ledipasvir and Sofosbuvir) to clear the body. . . .
Hi, Tommy -- Ledipasvir has a half life of not more than 47 hours (Sofosbuvir is quicker, so Ledipasvir is all we have to consider here). That means 47 hours (or less) after you swallow an orange diamond, only 50% of the Ledipasvir remains. Another 47 hours (or less) later, only 25% remains. A week after you swallowed that last orange diamond, you had around 9% or so left. Two weeks after you swallowed that last orange diamond, there was less than 1% left.
HTH,
Gnatty
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Tommy, I took this off my thread that Gnatty answered my question about how long Harvoni stays in your system:
Bree, the way a half life of 2 days works is that after 48 hours, only 1/2 (50%) of the original remains. After another 48 hours, only 1/2 of the 50%, or 25% remains. After another 48 hours, it's down to 12.5%, etc., so after 2 weeks, there's less than 1% (0.78%) of the original amount left. The really interesting thing is that there's always some of the original left, even though it soon becomes an infinitesimally small amount.
Oh, I see she just answered but I'll post this anyway.
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How great is it that one can get info. faster here on the forums than one can get a return call from the Docs' office, get power back on, get Lab results, or info. from the makers of the Meds. we are on. Too, cool :). And on top of that the info. We share is usually more direct, to the point, and reliable than from the so called knowledgeable people that We rely on : ??? ??? ???
Thanx Gnatty & Bree, as usual right there when needed My Amigos en las armas de Guerra! Much appreciated. Sometimes when the grey matter confuses Me, it's nice to have back up brains on My helpful friends list ;D ;D ;D ;D
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Hi my dear forum family,
I can't wait to meet up in Hawaii! Post SVR and post tx crapola! I'm a writer. I'm a playwright, I am currently writing a play about hep C and me, how it slowly insinuates itself into every aspect of your life. Producing the play would mean giving up my anonymity so I am looking at the impact that would have on my family.
I haven't been able to write for 4 years since last tx which stole my brain, but I keep having moments of supreme clarity lately! I am keen to get out producing again.
I think a doco is a great idea. I love the idea of us all meeting up. SO many people here I'd love to hug for real! Cal :)
I'm happy to write a boo
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Cal, we must talk at some point! I think anything is possible! 8)
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How great is it that one can get info. faster here on the forums than one can get a return call from the Docs' office, get power back on, get Lab results, or info. from the makers of the Meds. we are on. Too, cool :). And on top of that the info. We share is usually more direct, to the point, and reliable than from the so called knowledgeable people that We rely on : ??? ??? ???
Thanx Gnatty & Bree, as usual right there when needed My Amigos en las armas de Guerra! Much appreciated. Sometimes when the grey matter confuses Me, it's nice to have back up brains on My helpful friends list ;D ;D ;D ;D
Tommy, I feel more informed than my doctor specialist! He has his certain knowledge which I need (he's not an info sharing kind of guy) but without this forum I would be in the dark about so many things.
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Bree, Just thinking out loud here! I wonder what it would take to get the Med. companies on board?? :-\. What do all You other guys think about that idea????
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AHH, the dark ages , Good Times , Good Times. I probably would have been a punisher for the Inquisition knowing My luck :o
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Hey Yall... Beto, Tommy, this concept might be in the realm of possibility.
What if...let's say a dozen post treatment Hep C people came to Hawaii and did a documentary. We could have a few group sessions on camera talking about... what it means to get treatment, the process of getting treatment (insurance, etc), being on treatment, post treatment and then what it's like to be cured. The good, the challenges, the health benefits and ultimately the process of freedom.
It doesn't have to be a commercial but a documentary and could be used to sway insurance and government to move toward making treatments more readily approved for everyone. It would be in, let's just say, the powers that be, best interest to subsidize this effort even if quietly.
Beyond that, we could have our own separate special times together.
I have experience as a facilitator, I could even get the camera crew over here.
I'm not ready to reveal which island I'm on for anonymity at this moment, but let's just say it's known as a healing island.
And, if this turns into a serious discussion, I think we should take it "off forum" to discuss. Food for thought....
I think this is a PHENOMENAL idea, Bree !! I would definitely be keen to participate (especially if it can be subsidized to cover airfare). I think this is something that could do a lot of good!
Already sportin' my shades,
kim 8)
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I think this is a PHENOMENAL idea, Bree !! I would definitely be keen to participate (especially if it can be subsidized to cover airfare). I think this is something that could do a lot of good!
Already sportin' my shades,
kim 8)
Thanks Kim. I think a proposal well written much like a grant proposal might have some weight. We could all sign it. Like, we are good at it, after our practice with our appeals and all. Nothing to lose either!
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Thanks Kim. I think a proposal well written much like a grant proposal might have some weight. We could all sign it. Like, we are good at it, after our practice with our appeals and all. Nothing to lose either!
Right on, Bree. (Or should i say write on? ;> ) And as you say, absolutely nothing to lose in trying. :)
kim
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4 weeks EOT today - supposed to get blood work done last Tuesday but postponed it (= chickened out!) til next week. I can totally relate to the feeling tired - like everyone else, I have stuff to do, part time work, helping my daughter with college apps, getting my inlaws moved to assisted living and their house ready to sell - daily stuff we all deal with. But the tiredness! I have no idea what happened. I used to not exactly be energetic but I could take 12 mile hikes and also backpack (slowly). Now the dog is giving me the fish eye because all she needs is to go round the block and that seems an effort. Plus a herpes outbreak and a shingles almost outbreak, headed off my Acyclovir (love those anti-virals). It's so good (in a bad sort of way) to read that others are feeling fatigue too - now let's hear it from those who were feeling it and are now back to 100%!
PS Did anyone get any hair thinning on Harvoni alone?
Cheers to all! Barbara
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Hi Barbara, I'm sure you blood work will go well. With all that you are handling, no wonder you are tired!
I'm getting blood workup on Monday which will be 6 weeks EOT. I wasn't scheduled to get it until 12 weeks EOT but I asked my internist as I want a full blood workup.
Since EOT I have noticed there is hair on my hands when I wash it... for sure a little hair loss, hope it's not serious. Someone just started a new thread about it today which I'm going to respond to.
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Barbara, someone else began getting hair loss after treatment; s/he started a post with a poll here: http://forums.hepmag.com/index.php?topic=3572.0 (I think that is the thread Bree refers to.)
As to the tiredness post-Tx, me too, although not as much as you, and not every day.
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good luck barb
Like Bree I am getting a blood draw Monday for approx 6 weeks. Bree, you will rock this one. Glad they are doing it at 6, that's halfway girl.
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good luck barb
Like Bree I am getting a blood draw Monday for approx 6 weeks. Bree, you will rock this one. Glad they are doing it at 6, that's halfway girl.
Thanks Beto, And so will you! I needed to hear that. My specialist only wanted EOT and 24 Weeks. I argued him into also 12 weeks EOT. I've had a few things happen that felt challenging (reaction to some paint, an invasive facial PDT treatment, extra stresses with family member) that knocked me backward. It scared me... ME, the queen of "living in the meantime". I'm planning to do a few more minor medical things while I have insurance so need to know where I stand before I make further decisions.... plus I'm not feeling peak.
To heck with the specialist, I got in touch with my awesome internist, 3 week wait to see her so made appt., then emailed her a list of blood work I think I need to get in advance of seeing her and she concurs and emailed back... "all labs ordered". She is a star! If labs cut down on the extra anxiety we go through, then that is a health benefit in and of itself.
If we are still (cancel that...) because we are still UND at 6 weeks, I think that's a pretty good indicator for 12 weeks and beyond. We may have to start a new thread on the Results, where they have "check in at 4, 8 and 12 weeks" and start one for 6 weeks or report under the 4 weeks. Still so happy for you Beto with that scan!!!
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Bree,
I agree on the bloods easing our mental health, which is just as important! I am having my 12 week EOT next Friday. He wanted me to wait, but i have told him, I need to know if I've relapsed because, then we quit this extra month. He agreed and wrote it up. Now I'm packing it! Anyhoo, I'm also having a 16 week EOT if we get that far. Even though he only wanted me to have a 12 week post EOT test. That would equal a 2 week, which wasn't quite UND. And the post EOT . Two V/Ls! Not good enough. We're not lab rats (well we are but we don't have to be treated like them!) cal :)
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Cal, totally agree. The health benefits of not living in fear far outweigh the few extra bucks that a sense of relief and well-being gives us. Counseling would costs more! We have technology today to help us.
Glad you are getting blood work, how you compute it is a little confusing for me.
I'm calling 12 EOT - 12 weeks after actual completion of treatment, not start date. And, I think if I understand you correctly, your 12 weeks will be end of riba and 16 weeks will be your actual EOT (no weeks just EOT) (you kind of have two, one with ribas and one without). Then there's the post... whenever your doc takes them... 4 weeks post, 8, 12, 24, etc. Anyway, that's how I understand it.
Tommy will be like... what the hell is happening on my thread! Ha ha Tommy!
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Tommy gets a demerit for not chiming in and setting the couse back...hehe
Bree- Totally down with the 6 week club. As for the peace of mind well...waiting for the results 'peace' not....good results, ecstasy then wait for the next...haha.
When my labs got messed up and they did only the CBC, I got the results online. The test was 11.00 US. I thought, that's nothing. I guess it is a big deal to the insurance CO's or the GOV.
I too had a disrupting time last week because of oral surgery and complications with bleeding. Caused a lot of stress. So I started to feel like it was a bad idea to put my body through that after tx, plus pain meds and antibiotics. So of course my mind got on the "oH MY" train...will this affect the numbers. teehee
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:( HEY HEY HEY!!!!! What is this? Kick a guy when he's down :( LOL!!
Been out of touch for several days. Wednesday feeling really exhausted, then started having severe lower G.I. distress. Left work early & stayed home Thursday. Spent a lot of time in the throne room if You know what I mean. G.I. said no worries unless fever spikes or dehydration becomes an issue. Oh yea , then the lovely little migraines kicked up Thursday. Everything eased up Friday so I went ahead with the HIDA scan of the gall bladder He had scheduled. Supposed to be outpatient procedure. In & out in a couple of hours! NOT!!!! >:( >:( >:( >:( Checked in at 10:00 AM and didn't get out until 3:30 PM ??? ??? ??? ??? No food since dinner Thursday, no fluids since midnight! Laid on My back under the scanner from 11:00 AM until completion at 3:30 PM ::) ::) ::) Back is stiff as crap and My hips are killing Me. Oh, I got about 2-3 ozs. of water and got to get up & go pee around 2:15 PM. Boy I was fit to be tied >:( >:( >:( >:(
Hopefully the results come back good. More stress & anxiety waiting for that!
Any whoo, Kinda tired & worn out from the B.S. the last 3 days. But still kickin' & bitchin' with the best of them!
BTW, I look at this as our thread. I have hijacked enough of other threads to even begin to worry about that.
ROSES ARE RED , VIOLETS ARE BLUE , I AM SCHIZOPHENIC AND SO AM i!!!!!!
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Hey Tommy! :) I hope you're bouncing back from your marathon appointment. Feeling better? Just checkin' on ya - miss your happy craziness around here! :o 8) ;D
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Hey Else, I appreciate the shout out. Fatigue has been kicking My ass from here to kingdom come! Headaches seem to have gone for now( SHHHH!!! Don't say anything!!! ) Don't quite know what to think about the lower G.I. issues , joints are still jacking Me up though. Over all I feel pretty good. Just been lurking & reading here lately. Trying to stay upbeat , some of the recent posts have brought Me back to reality. Meant to read my own mortality! I really am blessed to be in such good shape that I guess I need to keep My mouth shut and count My blessing big time. I don't want to seem like THAT person that gripes and moans all the time , But I have noticed several of the admonishers from before My arrival here on the forums are doing just that. Therefore I shouldn't add insult to injury & let it slide. They are just as human as I after all. HARVONI has truly been a Godsend To many of us. I just think ALL of the experiences should be out there & not just the spit polished/ shiny stuff . I realize negative thoughts can be detrimental, BUT HEY , We are all grown-ups here. All should be able to separate the wheat from the chaff. Read and learn, research and understand, observe and adapt :) What is to say My bad Sx's should be diminished for the sake of sunshine & lollipop Sx's??????? :P :P :P :P
Anyway, how are You My friend? Hope this find You in good health and spirits. Though I cannot picture You as anything but a glass half full kinda girl to My glass half empty! Like I sais just sleazing around the edges & reading. Here is to short waits, undetecteds , SVR , and Sunshine on Your face. Oh yea, don't forget the Unicorns farting pixie dust as they fly through the sky. Hopefully it tastes as good as it looks, cause Man that shit gets into everything ;D ;D ;D 8) 8) 8)
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Damn, just accidentally deleted a huge post. >:( And just when I was typing about hawaiian menehunes - ha! That's how those little buggers operate. ;) Re: magical creatures - most are up to mischief when you look into it. Fairies, leprechauns, etc. So I wouldn't be turning my back on no stinkin' unicorn! And cover your plates 'cause that sure ain't pixie dust!!!
No worries about being THAT person while I'm around, Tommy. I'm THAT person. Thankfully not due to Harvoni side effects, but my experience with my liver specialist's office sets me off like a tea kettle. I don't suffer fools gladly and I see no reason to do it silently. What if a reader (new or not) is having the same experience? Validation is so important. It makes one feel less alone, less crazy.
Real life information, empowerment, and validation of symptoms and experiences are what make this forum so powerful.
About your "Game of Thrones" (hey, you started that joke ;)) have you tried the BRAT diet that worked for Kim in the Forest? Also, glucosamine and chondroitin are both great supplements for joint pain. Backed up by a ton of sound literature. And as an anecdotal addition - a combo of the two has worked wonders for my 13 year old corgi. :) He's back to his old jolly self.
I'm am so a 'glass half-empty' kinda gal. It just so happens I like what's in my glass right now so that's good. But where's the motivation for filling a glass that's half full? Bah. Sounds passive to me.
There's no room for passivity or disempowerment when dealing with our health. Especially HCV!!! So bring on the gripes and moans, cowboy! 8) It's what makes up life. And it's the pauses between that make it music. ;D
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I'm still trying to decide if menehune's can be trusted! 8) I know where a menehune pond is where I live (I'm serious)! So we'll just have to go see or maybe invite them to our party.... and speaking of magical creatures, I have two little white 8 pound dogs, brother and sister, everyone says "don't feed them after midnight" they'll probably turn into gremlins!
Thank you for sharing Tommy and Else. Else, I'm with you on the liver specialist. I have had a horrible time with mine. I didn't want to burn a bridge so I tolerated him, but he has caused me much unnecessary grief. I did call him on it. Doesn't matter. He's not going to change. We have to look out for ourselves. My real internist doctor is a dream. I just got blood work due to some concerns and went straight to her. Forget him... he probably wouldn't even order it.
My glass is half empty and half full. I try to focus on the full part... I like life that way... makes me happier. Otherwise I get into fear and anxiety. Life is precious and beautiful.
We're all human and have many different experiences. And, most certainly with this treatment. It's important to share them and get support.
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Menehune!!!! Just watched an old recorded episode of America Unearthed . Any body wanna guess where it was at and one of the subjects?????? Hawaii & Menehune's of course!!!! Back in My wild & woolly days----- We didn't need no stinkin' glasses!!!! That is one of the many reasons My liver is in bad shape! What was the bad ass little gremlins name?? Stripe???? Leather jacket , shades , cigarette, & a drink in hand.
Definitely wasn't a GAME of thrones, more like the real deal!!LOL. BRAT diet is next if this doesn't clear up quickly!
Been taking MSM for years for a shoulder that is screwed up , except during Tx.! checking into glucosamine/chondroitin also. Never even bothered suffering the fools back in the day, just put them out of their misery!!! :D Just think how drab & disinteresting thing would get if us folks without a thought filter weren't around???
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Sure they have a pond, Bree. They built it! It's what they do. When you go there (in the daylight!!!) make sure and leave some ili'ili for them. You'll probably already see plenty there - they do love their dancing and singing! Regular party animals, they are. But leave them to their OWN parties, girl. They're trouble. OTOH, if you make nice, leave a few (daytime!) gifts, you just might get a few chores done for you while you're sleeping. ;)
Ahahaha! Good point about those glasses, Tommy. I used to pull a cork or two myself back in the day. Hadn't a clue about my HCV status. Oops.
Filters are for coffee pots!!! ;D 8) ;D
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Where is our ByeByeC Marianne these days? Haven't seen hide nor hair nor keystroke from her for about 2 weeks. Hope you are doing alright Marianne, wherever you are! :)
kim
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Been thinking the same, Kim. Debating on whether to be annoying and send her a PM. OTOH, if someone wants to lay low and chill, I want to respect that.
~ ~ ~ good vibes to you Marianne ~ ~ ~
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Hello everyone around the world in Heplandia!
Have not posted in about two weeks. Been under the weather most of the time, lurking around and reading posts & replies mostly. Largely been feeling worse than during Tx. Headaches though bad are much less frequent. Still a lot of joint pain. Lower G.I. problems refuse to go away. Since My last visit with the Doc, We have come to the conclusion that I will start on a pro-biotic supplement and modify My food intake to try to balance the good gut bacteria in Me. Seems the Harvoni might be the cause of the lower G.I. distress I have been experiencing.
Oh well, the battle continues. No one said it was going to be easy. Keep fighting the good fight and staying optimistic.
Seven weeks and a couple of days post Tx. now. Had four or five days in the last couple of weeks where I felt really great. Then the Sx.'s return. Looking forward to more of those good days to get more frequent as the old body recuperates slowly.
Which brings Me to My point. THANKSGIVING :) :) What do We have to give thanks for? Knocking out the virus surely. Harvoni. Actually Hep C as well. If not for the virus I would not have found Harvoni and in turn Lucinda's' blog, which led Me here to the Forums. Thankful for My Forum family which has been a source of solace, comfort,enlightenment,laughter, and a place to vent My quirky sense of rage and humor :P >:( :o ;)
The last two days I have felt very good. Had the whole Family, kids, grandkids,dogs, and grandogs as well!LOL ;D ;D ;D. Lots of good food ( in moderation! No seconds! ::) ??? :o
But most of all the chance of attaining a degree of normalcy and increased good health that was like winning the lottery. I personally had doubts about even making it to retirement age.
So here is a toast to all of You out there around the world My cyber family and friends. To Your health and well being. May all achieve SVR and good health. To all that are not well, My thoughts and prayers are with You. Hope everyone can join in My Cyber Conga line around the globe. HAPPY THANKSGIVING TO EVERYONE!!
;) INSTEAD OF A SIGN THAT SAYS " DO NOT DISTURB" , I NEED ONE THAT SAYS "ALLREADY DISTURBED! PROCEED WITH CAUTION! :P ???
P.S. HOPE MARIANNE AND DRUMMERMAN ARE DOING WELL AND ARE O.K.! HAVE NOT HEARD HIDE NOR HAIR FROM EITHER ONE OF YOU LATELY. PLEASE REFER TO PREVIOUS PARAGRAPH ;) :o ??? ::) :P :-X :-\ 8)
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Tommy, good to hear from you and glad you are o.k. even with the dips here and there. Wishing you everything wonderful that life has to offer! Love, Bree 8)
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Thank You Dear, the same to You. Waiting for that new Me feeling with anticipation. That is if that Gator doesn't get Me first :-\ ??? 8)
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Happy Thanksgiving to Tommy and to all!
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Happy Thanksgiving to you too Tommy! Any gator with that family dinner?
Those post-treatment problems just take time to sort themselves out. Interesting that so many of us experience some form or another of post-tx probs that are worse than anything during tx (much worse in my case). My post-tx probs are pretty much gone now, but it took me at least 10 weeks to get to that point.
The probiotic pathway sounds like a good plan for your lower GI problems. I eat yogurt with live culture daily - usually in a smoothie.
Happy Thanksgiving to all my forum friends and fellow travellers! We do indeed have much to be thankful about!
kim :)
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P.S. HOPE MARIANNE AND DRUMMERMAN ARE DOING WELL AND ARE O.K.! HAVE NOT HEARD HIDE NOR HAIR FROM EITHER ONE OF YOU LATELY. . . .
Tommy, it's always great to have one of your posts to read. But you've never actually gone AWOL -- it's more like you join the Trappists for a while, but you still check in to read posts. byebyeC, OTOH, hasn't checked posts since Nov. 2 and drummerman since Nov. 11.
bbC was still posting upbeat messages on her last active day. I recently sent her a PM indicating she was missed and hoping she and her family are well -- no reply. She should be finishing Tx on 12/1.
dm had received excellent EOT lab results but then stopped posting after editing this 10/24 post on 10/25: http://forums.hepmag.com/index.php?topic=3477.msg32487#msg32487
We can still send them our well wishes, good vibes, etc. over the invisible network that existed long before the internet was a gleam in anyone's eye.
Happy recovery from Thanksgiving dinner, everyone! -definitely thankful for all of you.
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Good Morning to All, another glorious day smelling the flowers instead of the roots down here in the deep south on the third coast. The Good ole' United States of Texas as it were! Heh Heh Heh 8). Even though it is black Friday and all, odd name Huh? I have a rare few days vacation that do not comprise of Hospitals, tests, or Dr. visits. I plan on doing absolutely nothing except eat the T-giving leftovers for the next FIVE beautiful days even if the weather turns sour! :P ;D
Unless I can scrape up the money for diesel & provisions to head out west to My land for some star gazing and BIG ASS CAMP FIRE providing it ain't to dry! ;). Funds are a little tight right now , what with the Holidays and all. But, I plan on treating Myself come hell or high water regardless ;D ;D ;D.
ELSE, Maybe binge watch The Walking Dead after reading Your post & seeling Your Avatar!
KIM, No Ma'am, nothing exotic this Year. Just good ole' fashion traditional southern food and plenty of it. Thanfully!!! The Sx.'s abated to allow Me to enjoy a little of everything as well as being in a good mood & feeling pretty sociable with the whole family & a crap load of Dogs! Got bitched at for slipping treats to them as I was carving the Turkey and cutting the Ham. Hey, it was all the good parts ! No fat and skin. I figure they need to eat healthy too right. After all, most of them are allready a little pudgy because the Wife , Daughters , & Grand Daughters think they need a treat every time they go Pee!! :o :o :o.
GNATTY, Maybe a temporary Diarhetic Vow of Silence? :-\ :-X :-[ :-[ :P ::) :o 8) 8) 8). I had a couple of PM's with Drummerman. He was a little under the weather like Myself, but, was lurking & reading as well. I figured I would respect his space & wait for a forum post or reply when He was ready & feeling up to it. Marianne OTOH, was having a very bad patch with I believe Riba sides as well as a trip to the Emergency room with a gall bladder attack as well. Kinda worried that she hasn't posted for a while.
FEEL THAT VIBRATION AND HUM?? THAT ISN'T AN EARTH QUAKE, JUST ME DOING THE CONGA SOLO AND STOMPING GOOD VIBES AROUND THE WORLD TO ALL YOU HAPPY HEPPERS OUT THERE. HOPE THAT ALL THAT ARE NOT FEELING WELL GET BETTER SOON AND JOIN MY WORLD WIDE CONGA LINE 8) 8) 8) 8) 8) 8)