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The Prize: SVR (plus side effect note)
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The Prize: SVR (plus side effect note)

I can now officially count myself among those who have attained SVR. My 25 weeks post EOT HCV PCR is UNDETECTABLE. Finally, 37 or so years after contracting the virus, 20 months after being diagnosed with the virus, 48 weeks of triple medication treatment, and 25 weeks of waiting post treatment to be tested, I am free of the virus. I thank everyone on this forum for their valuable information, insight, support, and humor, without which, it would have been much more difficult to complete treatment successfully.

For those who have attained SVR and stayed on the forum to help the rest of us, Thank You! For those who underwent treatment with me, offering advice and support, Thank You! For those for whom treatment did not work, hang in there, new treatments are on the way.

For those still in treatment, hang in there and fight tooth and nail to stay on treatment and attain SVR. When you get to the end of your rope, tie a knot and hang on. SVR is attainable. The big payoff for going through the ordeal of treatment is SVR and a Hep C free life. Yes, it is well worth it.

Just to recap my stats: Genotype 1; infected about 37 years ago; diagnosed July 2011; started Tx Sept. 2011; ended treatment Aug. 2012. Starting VL 14.4 million; Week 4 VL DET; Weeks 8, 12, 16, 20, 24, 28, 32, 36, 48 VL all UND; 12 weeks post EOT VL UND.  25 weeks posts EOT VL UND. No dose reductions. 48 wks of treatment.

(Pretreatment, I did have several extrahepatic manifestations: Systemic Vasculitis with Pericarditis, Pleuritis, & Hemolytic Anemia; Severe Fatigue; Gradually Increasing Blood Glucose; Unexplained Weight Gain; Sudden Onset Unexplained Allergies and Asthma; Dry Eyes; Dry Skin; Peripheral Neuropathy)

Worst Treatment Side Effects: Rash & Itching, Nausea & Bloating & Vomiting, Rectal/Anal issues (crapping shards of glass). These were the worst side effects I had in terms of misery and potential game changers. However, these side effects were compounded by the fact that my treatment team had no clue how to assess and appropriately treat the side effects. I had to demand treatment and they gave it reluctantly after several weeks of having the problems. I firmly believe if my treating team had been competent and had treated the side effects early on, I would have had a much easier treatment.

Other Side Effects. I am listing the other side effects I had so that people can see the wide range of side effects possible with these drugs. Some side effects stayed for the entire treatment and others waxed and waned. Some lasted only a day whereas others moved in for the duration. Some were severe and others were a nuisance. I have decided that these drugs can and do cause just about every possible side effect imaginable. There are many other side effects and I am listing only the side effects I had. If listing these side effects can help anyone know that they are not alone dealing with weird side effects, then it is worth it to list them. And none of us should have to put up with the docs telling us the drugs don’t cause the side effects we have.

Cardiovascular:  Premature heart beats; Frequent episodes of rapid heart rate (tachycardia 180 beats per min); swollen ankles and feet

Dermatological:  Rash ….. red skin, hives, wheals, confluent hives, macules, papules, pinpoint lesions, flat red-purple lesions, bright red lesions, dry scaling lesions, skin cracks/fissures (palms, fingers, knuckles), eczematous lesions, psoriasis type lesions;  Itching  continuous/widespread; Hair Loss – mild -mod.; Mouth and Nose Sores; also some weeping of the rash areas

Gastrointestinal:  Nausea (severe); Vomiting; Bloating (severe); Belching (excessive); Flatus (excessive); Diarrhea (burning); Crapping shards of glass; Hemorrhoids (internal and external)

Hematological: Anemia (Hgb 10.2); Drop in platelets, WBC, and Neutrophils

Musculo-Skeletal:  Muscle and Joint Pain and Aches

Nervous System:  Brain Fog; Inability to Concentrate; Poor Memory; Inability to do Abstract Thinking or Calculations; Tinnitis (ringing in the ears – severe, continual); Headache (mild but constant); Dizziness (frequent); Vertigo – (1 episode of severe vertigo lasted about 30 min.); Finger Tremors – fine motor tremors); Taste (everything tasted like cardboard); Restless Leg Syndrome; Romberg’s Sign (loss of balance when eyes were closed); Hypersensitive sensations like electric current in chest and abdomen; Hypersensitive skin – felt like deer flies biting me, also sensation of a spider crawling on me, also burning and prickling sensation of feet like  they were wrapped in steel  wool; Balance and Coordination Issues; Heavy Legs (felt like I was walking  through 2 feet of mud with lead boots on)

Ocular:  Dry eyes (like sand in them all of the time); Vision changes … mostly poorer vision, blurry vision, difficulty focusing on small objects or letters

Respiratory:  Sinusitis; Dry cough (continuous while on Incivek); Shortness of Breath

Other Side Effects:  Fatigue – severe; No Motivation; No Energy; Flu-like Symptoms; Low Grade Fever; Generalized Weakness; Extreme Dry Mouth (despite drinking over a gallon of water a day); Excessive Urination; Urinary Dribbling & Stress Incontinence; Sweating
75 Comments Post a Comment
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4856858_tn?1365382377
Congratulations! That is awesome news! That was a long Tx and wait.
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179856_tn?1333550962
Pooh what asbolutely wonderful incredible news!  Knew you would make it...but it's still nice to see it in PRINT!

YAY! And yay for all you have done and continue to help. KICKED HCV BUTT!  :)
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Avatar_m_tn
Awesome - another svr giving the rest of us even more hope. You deserve it.  Thanks again for chiming in on my posts.  This is worthy of dinner at the best restaurant in town!!
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3159077_tn?1356034731
Hooray and congratulations for winning the war! Thank you for continuing to post here and help the rest of us.
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Avatar_f_tn
That is great news!!  Congrats!!
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Avatar_f_tn
You did so well to hang in there with all those horrible sides. Congratulations!
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Avatar_f_tn
Pooh I am sooo fricking happy for you!  Such wonderful news.  With what you have been through it really gives us ALL hope.  Thank you for everything.

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1815939_tn?1377995399
Thank you all so much! We can beat this disease, one SVR at a time.

I forgot one side effects, LOL, and that is gum recession lower front (3 teeth). So keep an eye on your gums!

I should also mention, ALL of those side effects are now gone except for the gum recession and some lingering psoriasis type skin problems on my face, arms and neck. Even the psoriasis is better than it was and I am hoping it clears up eventually.
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3230925_tn?1397619565
Congrats! Welcome to the club.
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3093770_tn?1389742726
Congratulations Pooh, I am soooo so happy for you. This is such great news to hear before weekend. It makes it also so much more bearable for the rest of us still treating knowing that there is hope at the end
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1747881_tn?1358189534
Congrats pooh, this is fantastic news, time to break out the red shoes :)

Enjoy your hep c free life

Keith
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4670047_tn?1375734001
So happy for you pooh!!!!! I sent you a note today because I thought I missed your good news. Your not accepting callers at this time. :-) :-)  Well great news!!!
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4113881_tn?1401895587
Congratulations Pooh! I am very happy for you...VERY! You have been so helpful to me in my journey through treatment...I have learned such a great deal from you. This is your day....enjoy the feeling and.... the rest of your life for that matter....HEP C FREE!!
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4333925_tn?1359106042
That is is AWESOME news and thanks for sticking around and help not only me but others as well!!!!
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Avatar_f_tn
So very happy for you Pooh!
Congrats!!!!!




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1654058_tn?1407162666
I LOVE logging on and seeing your post! It is great seeing it in print. You've helped us all tremendously. You deserve some more good news. xoxo Karen:)
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2029713_tn?1373044704
Yay!!! That is wonderful news. Thank you for all the wonderful information and answers that you dispense here. I've learned so much from your posts.
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4780577_tn?1359079056
Awesome news pooh!!!  
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446474_tn?1404424777
ஜ۩۞۩ஜ▬▬▬▬▬●●●●●●●●●●●● ¨“ª¤.,¸¸¸,.¤ª“˜¨¨“ª¤.,¸¸¸,.¤ª“˜¨¨“ª¤.,¸¸¸,.¤ª“˜¨¨“ª¤.,¸██▀▀█▄─────────────────────────── ──────██▄▄█▀.█▀.█▀█.█─█.▀█▀.█.█▀.█─█.█───── ──────██▀▀█▄.█▀.█▀█.█▄█.─█─.█.█▀.█▄█.█▄──── ─────▄██▄▄█▀.▀▀.───.───.─▀─.█...─────────── ¨“ª¤.,¸¸¸,.¤ª“˜¨¨“ª¤.,¸¸¸,.¤ª“˜¨¨“ª¤.,¸¸¸,.¤ª“˜¨¨“ª¤.,¸¸¸,.¤ ●●●●●●●●●▬▬▬▬▬▬ஜ۩۞۩ஜ

凸 (^_^)  凸

Hector
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Avatar_f_tn
Hey thats fantastic news. Congratulations!!!!! Wow what a feeling that must be! And thank you for your posts and staying around on this forum helping those of us still on the long journey.
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1815939_tn?1377995399
Thank You, Everyone! I could not have done it without all of you.I will be forever grateful for your support and knowledge.

Hector, I don't know how you make all of those things in your posts, but I really love them.

Here's to SVR for Everyone!
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Avatar_n_tn
I just logged on feeling sorry for myself and my balding head. Thinking about quitting and then there was this. It brought a tear to my eye. You hung in there for 48 weeks with all those nasty sx it inspires me to push on for my last six weeks. WELL DONE!  
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1815939_tn?1377995399
Thanks.

I hope that my post inspires everyone to stay on treatment and attain SVR.

I did not have a picnic on Tx, but I honestly must state that some others on the forum had it much worse than I did, and they stayed on treatment for the entire Tx or until they medically could no longer continue. I was very lucky in that my blood counts never dropped to critical levels so I avoided the added drugs of Procrit and Neupogen, which have their own side effects. While many people had severe side effects and many people inspired me to continue treatment, I think Karen (crossroadsec) stands out as a real fighter and inspiration. If I got discouraged, all I had to do was to think of Karen and everything she was going through, and I knew I could continue. And, of course, Hector is another real fighter. My side effects were nothing compared to what Hector lives with every day. Sometimes it helps to put things into perspective if one looks at what someone else is going through.
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Avatar_m_tn
       wow!!!!......so cool......congratulations.      barry
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1116669_tn?1269146866
Yea!!!!!!!!!!!!!!!!!!
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789911_tn?1368640383
Congratulations Pooh! Yes, I loved reading your posts on treatment.  You are a true inspiration!  Fantastic job!  Geeze, those dam side affects..Lydia
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Avatar_f_tn
Thanks you for your continued support here. I for one when I was on treeatment read your post. I am so glad you got SVR  . Thank God you are going be ok. Take care and  we all love you here and value your advice and support. So glad you are free of this desease.
Big smile and hug
bbj
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2114467_tn?1358213856
Pooh, this is beyond SWEET!!!!! Over and over again, you have contributed to others and in great detail, answering questions, with such commitment to keep us all on track. Your generous spirit will be with me for the rest of my life.
It takes a lot of strength to demand doctors, to do their part. You give us the courage, to advocate for ourselves, and make choices.
48 weeks and no dose reductions! Bravo.
SVR, woohoo!!!!!!!!
C
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3122657_tn?1357436202
Congrats Pooh!!!!!!  thats great news

i know i speak for everyone here when i say have a happy and healthy HCV free life : )

swimmer just about said it you have been so helpful to us all here nice to see something good come your way

you post listing all your sides is very helpful to us all as we can read it and refer to our sides i feel like we have all become like a big family here on this site because its hard for our own family to know just what we are going through thanks
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Avatar_f_tn
Dear Wonderful, Awesome, Pooh,

I felt like I should log on today and am so happy I did. You did so much for everyone with your posts and responses. You were a great source of good information and inspiration for everyone. Not everyone who deserves SVR got it, but I am grateful to see that you are one of the people who did. You always sounded remarkably clear headed to me when you were on tx and did a fantastic job. (I was a real mess). Welcome to the SVR club and congratulations! I am so happy for you.

To those for whom the tx failed; as always Pooh has good advice. Hang in there. There should be kinder gentler tx headed your way.
Gerbils
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4652753_tn?1364585546
What great news!  I have only been around for 6 weeks but your advice has given me the strength to continue this journey.

I read and read again your post with all of the sx you faced and you are an amazing person.  I can't imagine that your prize shouldn't have been SVR.

I take to heart what those of you who have been through this say and I am determined to say on top of the side effects as best I can.

Again, thank you for everything and all the best to you!

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Avatar_f_tn
Congratz!  

I definitely appreciate all the people on here and your story helps us to see what we are about to expect as hubby's journey through treatment is going to start in about 2 months.
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2111792_tn?1342708227
I'm so happy for you!!!  This is awesome news!!

It's been 21 months since the approval of the PIs and it's impressive how many SVRs are being posted... it gives the rest of us hope!!

Enjoy every minute of every day of your new HepC free life!!!
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4358482_tn?1354729591
wow, congratulations !! It's so good to hear tx works !!
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Avatar_f_tn
CONGRATULATIONS, CONCRATULATIONS& CONGRATULATIONS AGAIN, its absolutely fantastic news you must be over the moon and very proud of yourself and rightly so. Best wishes and love all the way from England x
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Avatar_f_tn
Great News Pooh !! wonderful, I'm so happy for you !!!!!!!!!!!!!
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1494170_tn?1361754460
Way to go pooh!!! congratulations!!!
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Avatar_f_tn
  Whew-hooo, Pooh!   And thank you for documenting your extra-hepatic symptoms, which I had some of, also. This is something that we need more research on.  All of the time you put into educating people on here is extremely valuable.  These Hep C Support Groups are literally, life-savers :)
  
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766573_tn?1365170066
Pooh I cannot begin to say how happy I am for you. I am sorry your treatment experience started out so horrid. Having said that it was your tenacity and extensive research that paved the way for others and set the ground for treating the side effects of Triple therapy with Incivek here on Medhelp. Until then there were not many helpful detailed posts with data related to the many side effects of Incivek much less effective ways to treat them.

I am sorry it worked out that way but grateful for your perseverance in understanding and 'teaching the framework for SOC for triple with Incivek here on the forum. It saved me a lot of time and grief and I see it continue to do so for others.
I wish you peace & good health with SVR♫
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Avatar_m_tn
Way to go pooh.......... Congrats
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Avatar_m_tn
glad to hear you got SVR.  you are both an inspiration and a fountain head of knowledge.  i thank you from the bottom of my heart for all your wonderful advice and encouragement over the past 73 weeks. i had labs on tuesday, 25 weeks post-treatment, and found out yesterday that i am also SVR.  
blessings
eric
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1815939_tn?1377995399
Oh, Eric, that is fabulous news. I am sooooo happy for you. Congratulations! You are another one that went through hell and you gave me a great deal of inspiration.  
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1815939_tn?1377995399
Thank you all for the many congratulations and good wishes. This is a wonderful group/forum of people and I could not have done it without the support of everyone here. Here's wishing all of us SVR.
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131114_tn?1380086790
WOW!!!!!!!!!!!!!
That is such great news, have a wonderful SRV life and don't look back unless you feel you want to offer a hand to others on this journey!!!
SO fantastic.
YES,
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1669790_tn?1333666195
A bit late for the congrats - sorry, out of town and just saw this.  Now that you are "officially" SVR I bet this is a bit of a relief to have this behind you.  Even though we know the odds after a UND post eot at 3 months, it still lingers that might be in that miniscule percentage.  Now, no more worries.  A life with no HCV to worry you and compromise your health.  Hope you have a full recovery with good health.  

Thanks for all of the support that you've given the forum members.  And thanks for being a friend. :)
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2136167_tn?1374732251
This is the best news I ve heard lately.I am sooo happy that you can finally live your wonderful SVR life .You gave me and others lots of support which I will always treasure and remember. CONGRATULATION!!!!!!!!! I am done with my Tx as of yesterday.Last 4 months were very  tough!Now waiting for EOT lab results.
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1856046_tn?1330240845
Yippee for you on your svr!!! Can I be next please???  Only 1 more shot to go!
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Avatar_f_tn
Great news!  Congratulations
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1815939_tn?1377995399
Thank you!  Wishing everyone SVR.
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Avatar_f_tn
Congratulations!!! And thank you so much for you input here. You have been a life saver. Dr just are not up on the side effects of triple tx. I have received more info from you, Hector and misc others than my DR could give. They just do not know yet. Your help has save me and my sanity. How can I thank you??? Stay healthy and happy!!!!!! Thanks!  
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3242988_tn?1359310116
Congrats Pooh!
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1652596_tn?1342015226
pooh...you're awesome!!!!  thanks so much for all the support you give to others.  i know you helped me.  congratulations on SVR.  i've always loved reading your posts.  you're an inspiration to all of us here.  thanks so much.  have a great healthy future without HCV.  belle
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190885_tn?1333029491
really nice post here!....good work ...good info....have a great time svr !....billy
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1815939_tn?1377995399
Thank you all for so many wonderful comments and sentiments. Here's hoping everyone attains SVR!
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Avatar_f_tn
Wow-that was an impressive list of side effects ;)  Congratulations, Pooh!!  Such wonderful, wonderful news.
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Avatar_m_tn
I don't know how I missed this but I did.

So a belated..............CONGRATULATIONS ON YOUR GREAT NEWS!!!!!!!!!!!!!

Stay well,
Mike
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1815939_tn?1377995399
Thanks Mike and Stormy. And thanks again to everyone of you. We are all in this together.
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163305_tn?1333672171
YES !!!!!!!
Put on those red shoes and lets go dancing over the moon !
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223152_tn?1346981971
It must be nice to finally put all of this behind you.  It has been a long haul, pooh, and the treatment is such an isolating ordeal, it will good to reenter the planet earth.  My best for an active and hep-c-free life.
bean
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Avatar_f_tn
Congratulations and I wish you much luck in your new life without the virus!
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Avatar_m_tn
3 weeks post treatment, still have side effects. cant sleep, tired all day, feet hurt bad, chest pain (no heat issue), brain fog. Sometimes I cannot talk right. The words come out wrong. I hope all this ends soon.
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Avatar_m_tn
congratulations btw
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1815939_tn?1377995399
OH, Frihole, Scherpie, Dino ..... Thank you so much. Could not have done it without all of you.

Dino: Congratulations on finishing Tx. It takes a while before the side effects leave. At least it took mine a while to leave. Little by little I felt better and periodically I would realize I no longer had a certain or certain side effects. I am 26 weeks post EOT and mine are mostly gone. Even my gums have improved considerably and I will NOT need a dental graft (just found that out today). So hang in there. I am sure you will feel better as the days go by.
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Avatar_m_tn
I wanted to add my congratulations to the already large list of people, but to also compliment and thank you for your wise posts and compassion.  

You have provided help to many people and also set a high bar on the quality of your answers.  Kudos and thanks.

Wishing you a speedy recovery and return to a normal life post TX.

willy
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1815939_tn?1377995399
Thank you, Willy.
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1986676_tn?1329866071
How did I miss this news. I really can't say how happy I am for you.

I hope this is the beginning of many happy and healthy years.

Another angel has got her wings and you truely deserve them.

Reva
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1815939_tn?1377995399
Thanks, Reva.
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1856494_tn?1340546214
Pooh,  You have definately been a beacon of light through so many dark days.  You rock.  You are free.  let me say that again - You rock, You are free.  That felt double good.  Congratulations to your loved ones.  I salute you fierce warrior.  Long live the Queen!  
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1815939_tn?1377995399
Thank you! It is great to be Hep C free. Wishing SVR for everyone.
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317787_tn?1373214989
Oh my gosh, day late dollar short me again.
I thought I had responded to your post, evidently not.
You have been one of the best members on here, so informative, so willing to give so much of yourself, I had to come back here and comment.
You are much loved, respected and admired here.
I read all of your posts, not sure how I missed this one.  I hope better late than never :)
I am so very happy for you.  It was such a hard time, I salute you dear Pooh.
Bless you
Dee
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1815939_tn?1377995399
Thanks so much, Dee. I could not have done it without you and all of the other wonderful, supportive, and helpful friends on the forum. We all did it together. Sometimes I wonder how we did it, but we did do it, LOL. Many, including you, had it much harder than I did, but we all made it. Now most of us have attained SVR (most of us who started about the same time in 2011). And others are approaching and crossing the finish line, too. I love looking at Frijole's spreadsheets and seeing all of those SVRs. As hard as treatment was, it was all worth it. Thanks again.  : )
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317787_tn?1373214989
You are so right, it was worth it.  I could not have made it without you and all the people on here.  It was very hard but made me know how strong I could be. I find I am really slow in getting back to my pre tx self but recognize I may never get there and have to be happy with that.
All my best to you
Dee
Thank you so much
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1644356_tn?1349786811
Congratulations on your hard fought battle.
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1815939_tn?1377995399
Thanks so much. I know you fought and won that battle, too, so we both know it is great to be free of Hep C.
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5720485_tn?1373566655

After reading your story I realize how hard you fought this virus and won!  Congratulations to you.  You are an inspiration to me when I feel so sick and tired I can read your story and feel your strength!

  Thank you as well for all your detailed information regarding side effects.
Cangrats,
Shyrl
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