Author Topic: Starting Harvoni!! (Read 369805 times)

Tutu · « **Reply #100 on:** December 18, 2014, 12:31:53 pm »

Day 8 and side effects have been minimal, slight headaches, nausea when I don't eat and acid reflux but I am also off my Protonics. Sometimes I feel like I have all the energy in the world other times I don't know how I am going to make it through the work day. I listen to my body and rest when I feel like I hit a brick wall, trying to drink as much water as I can, but I'm more of a sweet tea girl during the day so that change has been tough! I have to do blood work after 4 weeks and then again at 12 weeks. I can't wait to see what my levels are in January...2015 is going to be a life changing year for all of us!

mario555 · « **Reply #101 on:** December 18, 2014, 02:15:19 pm »

To Texasdave. I can understand you don't want to take a chance on the plane with your pills!!! I will have to fly and stay away for 5 days and I've estimated all the shit that could happen so as to make sure I don't run out of pills away from home! Make sure to keep the pills with you on the plane but make sure they are not getting too hot. The Harvoni instructions say to keep them below 92 degrees (30 Celcius). I thougt it might be a bad idea to have them against my body and also, I will take a few extra (a whole week) in case of snow storms, delays, etc... I told my wife I'd be willing to drive, fly, take the train, hitchicke if need be but I'll make darn sure I don't jump a day. Good luck to you and your treatment.

John3333 · « **Reply #102 on:** December 18, 2014, 09:19:48 pm »

Hanging in Chicago, that's cool. My friend at work grew up there, he's a Bears fan so he's not to happy lately, LOL. $1125 a pill there Dave, keep an eye on them!

Well, today was day 6 for me, little bit of a headache. The weird thing is, I take it around 800AM, and then I get a burst of energy about an hour later. At night I am tired, but who isn't? Feel a little weird sometimes, hard to describe, but really, so far nothing to complain about, really quite tolerable.

Islandgirl, I was doing some reading on Harvoni, and the more I learn, the more I realize how lucky we are to get this drug. It's the "cadillac" of the meds out there right now, and many people can't get it. I guess AbbVie's combo treatment is coming out sometime this month, that may help bring prices down in the long run I hope.

I haven't seen Mel on in the past few days, hope all is ok with her. When I first started reading the forum I learned a lot from her posts.

Tutu, mario, Badbradley, Riseup, Kathy, all of you guys, glad your here. I must say I am very excited. I used to worry so much because I have young children, I am 50 as it is now, and with the Hep C, well, I was always waiting for that shoe to drop. I want to be here for my kids. I used to just push the Hep C stuff to the back of my mind, workout like an animal, try to eat right. No boozing. I made some bad choices in my twenties, worked my ass off to straighten my life out. Now I am blessed with a great wife, great kids. It was always there the though, the elephant in the room that I didn't want to think about. I would worry constantly about being 60 and leaving a 14 and 16 year old without a father, you know? Now hopefully we can all get rid of this thing once and for all!!

Thanks for listening. There is really nobody else to talk about this shit with, it's not like I am going to walk around my office and announce to everyone I have Hep C, LOL.

John.

BattleTheBeast · « **Reply #103 on:** December 18, 2014, 10:45:32 pm »

Hey John,

I'm around just quiet (that's a shock, I know). I'm doing ok as well, Harvoni seems to be much easier on me than the Olysio was.

It's amazing that we have this forum and each other. No one really gets all we are and have gone through with this monster and stigma. One day it would be amazing to get in a room with all of you and pass some hugs around and share our stories.

I really have this huge desire to figure out a way to help people battling this and make a difference; not sure how but maybe someday I will be able to make that really happen.

Hope everyone is ready for the holidays and enjoys them. Tomorrow my middle
Child turns 35 so I'm taking her to lunch and just have some chill time with her. She's been dealing with Post Concussion Syndrome after being slammed at a stop light.

Happy almost Friday and thanks to all of you for being here for me; it really really matters and means so much!

Mel

badbradley · « **Reply #104 on:** December 18, 2014, 11:35:40 pm »

Hey Mel,
Forum's a little slow today Mel. Not sure I'm comfortable with you being so quiet .I wanted to comment on the stigma thing and how people around us don't have a clue what were dealing with. For the past 3 years my life after I walk through the doors at work has been spent in large part on the web trying to figure out how to prolong my life. The best foods to eat, foods not to eat, vitamins, herbs-which ones are good which ones are bad. Exercise - how much? Do I tell the dentist,do I tell my boss? And the few people that do know, don't really know. I really am almost to the point of putting it out there. That's a scary unknown, but I too feel an obligation and desire to make a difference. We all have our own story and experience with this disease and telling our stories is the best pay it forward I can think of.
Anyways, thanks for listening-I needed to say this. Brad

BattleTheBeast · « **Reply #105 on:** December 19, 2014, 07:51:57 am »

Brad,

No worries, it's all good. I was busy working and I am feeling so much better without that Olysio in me. The Harvoni and I are doing much better together

I am thinking about ways to reach out to high school and college students. I know they have all these programs for HIV but I don't think they really talk about Hepatitis they way they should. The kids need to be aware of the dangers of it and that it's a life changer if it turns into cirrhosis. I'd also like to work on the stigma attached to it. Just because someone has hepatitis it doesn't mean they were an IV drug user although that is the perception from so many people I have discussed it with. I mean in the US we didn't even test blood for it until 1992 so anyone who had a transfusion before then could have been infected. People also really need to pay attention at nail salons and make sure they are using good sterilization techniques or bring their own instruments in. For me, I will never be 100% sure how and when I was infected. I know I have been cut over the years getting pedicures, I know I had blood given to me at the age of 14 during an emergency surgery. I don't have any tattoos and didn't use IV drugs but was married to an IV drug user in my early 20's.

I'm not really sure how to go about it all yet but just mulling it around in my head. Maybe even just getting a bunch of stories together and doing a self-published free book. As you said our stories are the most powerful and really tell the tale. Hopefully I will have a long life ahead to figure it out and make a difference in someone's life.

Mel

mario555 · « **Reply #106 on:** December 19, 2014, 08:02:17 am »

Battle the beast and Badbradley. On the subject of helping others I wanted to let you know my experience with ''coming out of the closet'' so to speak... I'm an older accountant (59) with a stellar reputation but no one knew me in my stupid teenage years when I probably got sick with Hep C (1975??). About 1 years ago I decided to do what I could to help other Hep C sufferers. My liver specialist had just received a brand new Fibroscan machine and he wanted to boost his liver department through a press conference. On top of the hospital management, he wanted to have an Hep C patient to address the crowd. I ended up giving a 5 minutes speech on front of the press and approx. 100 people in the hospital lobby. I was dressed as an accountant (suit, tie, freshly cut hair, etc..) and told the crowd about what it was like to have Hep C and what benefit came of the acquisition of the Fibroscan machine (had the first run at it in exchange for my speech). My picture was front page on a local paper and I had to come out with my co-workers. They started giving me a wide berth when coming close to me. I think they were scared to have my viruses jumping at them! It lasted about 2 weeks and then everything died down. I'm sure I must have been the talking subject at supper time on the day I told everyone. And YES, there is a stigma and YES, it is delicate to try to explain where the hell I got this from! I thougt ''f..'' them all, I'd be dying if I wouldn't take the treatment (F4, 8 millions VL) and I really thought I'd be unable to hide the side effects of the new medication that was coming out at the end of 2014 (Harvoni). Also, somebody had to do it! I was lucky to have my own business but be careful if you're an employee. Let your boss know first and wait a while after so the boss can digest the new information... This disease HAS to come out and YES, I did stupid things 45 years ago, so What??

BattleTheBeast · « **Reply #107 on:** December 19, 2014, 08:34:31 am »

Bravo Mario!

Thank you for sharing your story.

I actually just "came out" to my boss last week. She's been allowing me to work from home for over 6 months without a total explanation of what was going on with me. I'm a Project Manager and can do my job anywhere as long as I have internet access, a computer and a phone. Luckily my company is pushing more "remote" to save on office space since real estate is a huge budget amount in the NE.

I just finally felt strong enough after knowing about it for 5 months to tell her. Maybe it was the strength from all of you . Maybe it was coming to terms with it inside my head, maybe it was because I am finally starting to feel a little human again. I currently have an agreement to work remotely for a couple more months so I figured well I might as well just tell her, hope I beat this beast and am healthy enough to go back in two months, by then she would have digested it. It could turn out to bite me in the butt but I had to do what I felt was right. I have no reason to be ashamed, what's the difference if it is Hep C or cancer? Would I be ashamed if it was cancer instead?

I am not at the point where I want to actually be in a newspaper, so not quite as brave as you but I am working on finding my courage!

Mel

Texasdave · « **Reply #108 on:** December 19, 2014, 09:46:55 am »

Good Morning All,

Day four and no side effects so far. I do have a little case of the sniffles, but that may be from being here in Chicago in the freezing cold! Ready to get back to Houston where it's q bit warmer.

John - I appreciate hearing about your family and such. I'm about your age but my kids are all grown and gone. Enjoy those kids my friend, it goes by so quick. Before you know it they'll be heading off to college and off to start their lives. You're very lucky to have them and an understanding wife to support you. Unfortunately, my wife and I are separating and couldn't care less about me, but that's ok. I'm truly blessed actually having a real shot at being cured of this monster.

Island girl- I travel all the time for work and was afraid I'd get stuck somewhere and have some kind of horrible side effects or something. Very lucky that there have none so far.

Mario- that's awesome to hear about you're addressing people and the press. I haven't gotten up the courage to "come out" yet. Don't know if I ever will or not. Just have to wait and see.

Mel - I like your thoughts regarding creating awareness about this disease. Have you seen the commercials on tv? Every time i see one I think how crazy lucky I am to have access to this miracle drug.

Everyone - thank you so much for posting and sharing. You don't know how much it means to me to hear how you all are doing, stuff about your lives,etc. It gives me strength to know that I'm not fighting this alone. I always remember all of you in my prayers every day. Keep it up, stay strong and we WILL win this fight.

Dave

BattleTheBeast · « **Reply #109 on:** December 19, 2014, 11:10:05 am »

Morning Dave,

Keep on staying strong. I couldn't imagine going through a separation at the same time I was going through this mess. Honestly my mind frame isn't the best everyday and some days it's really hard to stay "even" but as time goes on with the Harvoni I am doing better at that.

Yes those commercials, where were they 10 years ago? Maybe I would have already been tested and known and wouldn't be F4 today. That guy smiling and hugging his wife out in the sun, guess he isn't on S/O because not sun for Olysio,, haha. I can be so cynical, guess it's my Jersey Girl coming out!

Personally, I'd like to give a more real story to people, just saying! Anyway have a good day, I took today off to have a late lunch with my birthday daughter over in PA so I am going to take a nap after a bottle of water to get rid of this little naggy headache.

Much love to all,

Mel

JillLynn · « **Reply #110 on:** December 19, 2014, 12:24:30 pm »

I am not ashamed one bit of having HCV. I had 300,000 people listening every 10 minutes on my radio show and told everyone I was on treatment. As I said before I even did a segment on WXYZ news about it and how one shouldn't be ashamed NO MATTER how they got it. I was 19 when I shared a needle in college with 2 people. 19 years old! I did needles so briefly and choose NOT to hold that against myself.

I know why I used and I still deal with my violent, traumatic, alcoholic childhood when things come up. I have nothing to be ashamed of.

I'm a survivor in every sense of the word and I've come to terms with how fortunate I am. I've worked very hard at loving myself....when you grow up being told you're a no good piece of shit and beaten for looking the wrong way..........NO! shame on violence and people having children when they shouldn't. That's what I'd like to see.....young people learning and being taught how to raise healthy, whole children in school or college. Such a big job and so few do it well!

I have always forgiven my parents. I know they couldn't have done any better. But I know for certain, had I not done alcohol and drugs I'd have killed myself from the pain I was in. Don't recommend it for anybody else....but for me, I got the help I needed and was able to help my family too.

BattleTheBeast · « **Reply #111 on:** December 19, 2014, 12:33:57 pm »

Love that new Avatar Jill!

I am not ashamed of having HCV nor do I think anyone should be ashamed no matter how they got it.

For me, being so newly diagnosed I am just coming to terms with it inside myself. It was a huge shock to me and pretty scary in my situation raising and responsible for myself and my grandson who has special needs. I was pretty scared of hearing out of nowhere I am F4. Not to mention the doctors throwing out Thyroid Cancer and sending me off to biopsies and test after test. So I will survive and I will do something to help others so they aren't shocked into an F4 diagnosis. This virus needs to be stopped in it's tracks in the beginning and not be a silent killer.

You are a strong amazing woman Jill and I am so proud to get to know you

Mel

JillLynn · « **Reply #112 on:** December 19, 2014, 12:38:12 pm »

thank you Mel....I feel the same about you. AND.....I didn't even know what an avatar was until you started posting about it! Now I'm hooked on them. I like this one too! (smile) its for all of us!!!

yes, your journey with the virus is scary....very!

....I've known since the year HEP C was discovered but ignored it. I had no clue what my gastro and drs were talking about. It was years later I decided to treat it and learn about it.

So thankful it's a new day.......and we have a chance at a healthy "rest of our lives" w/o this darn virus!

mario555 · « **Reply #113 on:** December 19, 2014, 12:44:23 pm »

Congrats Mel and Jill for informing people about the disease. It helps everyone to understand and start dealing with that problem. Now that the means to get rid of that disease globally, we should start advocating to have everyone cured (like with polio). Jill, to mention it on the radio must surely have done lots of good for disseminating the information. Thank you kindly.
Mario

JillLynn · « **Reply #114 on:** December 19, 2014, 12:57:26 pm »

what was really special about it Mario was all the callers that started calling in sharing their experiences.
It was a great format to share all kinds of things.....but that was then......radio as we all know has lost that personal touch.

Thankful for our forum.......no corporation can take this away from us.

catniss · « **Reply #115 on:** December 19, 2014, 06:11:43 pm »

New to the forum and love reading posts. Started harvoni Dec 4th. Taking for 8 weeks since under 6 ml viral load and f1 scaring. Type 1a. Was approved by insurance company a week after my doc started paperwork for me. $17 monthly co pay which I will gladly pay. Was overwhelmed when I got the news because my doc said so many people have not been approved. My insurance is thru my retired military spouse. Was very overwhelmed when I got the pills. Mine are mailed to me. Surprised I did not have to sign for them. I have had no side effects at all. I am a gym rat(run,weights,Pilate's,spin) and I have kept up my 4-5 day a week workouts. Have always ate healthy and only drink water or tea. 1 coffee a day. I was kinda confused about the people getting multiple blood tests thru treatment so I asked my nurse. She said there is no reason for them because it will not affect my treatment plan at all. In other words my meds will not be increased or treatment extended. I will have blood work at the end of my 8 weeks then at 14 weeks then my final be at 20 weeks. Really hoping all goes well.

KathyNJ · « **Reply #116 on:** December 19, 2014, 06:27:30 pm »

Hi everyone,
Jill, you are a survivor and so happy you can let go of your past. For that matter, we are all survivors of a disease that has such a negative connotation. Personally, all my family and friends knew from the first diagnosis and had to be educated about hep c. I purposely never went for a manicure/pedicure after I learned I had Hep C because I did not want to unwittingly give this burden to anyone else. I always inform doctors/dentists and never had any negative feedback. Today, I was at my heart doctor for a checkup and told him I had started treatment. He was delighted and said: the government should make this treatment available to everyone --even people who are incarcerated. Treat it like the Jonas Salk polio vaccine and wipe this terrible disease off the face of the earth. Wow! I agree with him totally. They have all these AIDS fund raising benefits, so why not Hep C benefits with all the profits going to help those not lucky enough to get this lifesaving medicine. I have one week finished with 7 more to go. 2015 will be a great year for all of us.

sunrise · « **Reply #117 on:** December 19, 2014, 06:32:21 pm »

Hey fellow warriors
hope all is well. Hey JillLynn that is so weird when you were talking about your childhood. I mistaked it for mine! although I did not go off the rails until my divorce. My transmission although was due to a transfusion in the late eighties. Not that I was an angel by any means. But I feel that I am NOT a victim and I am happy to be alive today. I think it's great that you guys want to do helpful things for people that don't know about hepatitis C. Rubye posted Abbvie was approved today for their treatment! 2 more doses for me then no more S/O! Yay... Sunrise

catniss · « **Reply #118 on:** December 19, 2014, 06:34:52 pm »

Wow Mario just read your post about how you "came out". You are brave. When I found out in 1995 I told my parents but that was it. I have only recently told my best a nurse and my boss. Hep c has not slowed me down in any aspect of my life. I have always been ashamed of having hep c. I know its crazy thinking. I got it after one of my many brain surgery's/tests when I was an infant in 67. ☺

mario555 · « **Reply #119 on:** December 19, 2014, 07:23:13 pm »

I don't know who is brave! Me telling people around me about Hep c or you guys stories about brutal childhood stories and health problems!! I also read about stories of courage in these posts and I can only congradulate all of us for what we've done under a harsh overhanging clouds. We're hopefully will all be cured soon and we'll come out stronger from our Hep c. Most of us don't drink, drug, we eat well and exercise (I'm not necessarily talking about me because some of you put me to shame...). We will have a wonderful 2015...

BattleTheBeast · « **Reply #120 on:** December 19, 2014, 07:41:38 pm »

You are all so amazing, thank you for sharing this little piece of your life with me, I am honored to know all of you!

Mel

catniss · « **Reply #121 on:** December 19, 2014, 08:12:01 pm »

I feel great physically its mentally I'm having issues with. I will never forget the day I got the news from a young blond haired navy lieutenant. I thought I was going to pass out. Over the years I have ignored it at times, pissed off at times, until last year going for a biopsy. Before that never really went to a GI doc because did not think there was anything that would help me. Hated my last year doc so at the insistence of my go I tried a new doc in Nov that told me about harvoni. It was like a divine intervention. For the first few weeks after getting the pills I keep a daily journal of med time, gym activity, and what I had to eat and drink all day. I discovered I was doing this because I was so afraid of eating or drinking something that would be harmful to the meds effectiveness. After talking with my nurse I decided to stop journalling because it was harmful to my mental health. It has been a very long 2 weeks but will get my shit together and make it thru.

BattleTheBeast · « **Reply #122 on:** December 19, 2014, 09:14:25 pm »

Catniss,

So glad you found us and are sharing here. You will find the most amazing supportive group of people here. You aren't alone and we are all going through the mental game. I had horrible brain fog for so long I didn't even know my brain was fogged any more. Now all of the sudden my brain feels so much clearer, I am still losing words here and there or forget how to spell something but nothing like it was. Today for instance I couldn't remember the name of the place I made reservations for my daughter's birthday lunch, that's so insane to me!

Oh yeah, the only really bad thing besides alcohol is to take an antacid within 3 hours of the pill! I mean just drink lots of water, be consistent on your time you take you pill and eat as healthy as you can. No extra meds without checking with a dr.

There is so much knowledge on the forum, you can always ask! Anyway welcome and we are happy you are here!

Mel

catniss · « **Reply #123 on:** December 20, 2014, 07:46:59 am »

Mel
Thanks for the support. The occasional brain fog I get I attributed to either my blond roots or old age kicking in. My anxiety is hereditary (thank you mother). I actually check my pill box throughout the day to make sure I have taken my pill. At my two week nurse visit my blood pressure was so high that she started talking blood pressure meds. I told her wait till my eight week appointment you will think I am having a heart attack. I drink chamomile and lemongrass tea and workout a lot to combat this. The endorphins from my gym activity are amazing. We are all going to kick hep c's butt!
Have a good day
Catniss

John3333 · « **Reply #124 on:** December 20, 2014, 09:56:04 am »

Good morning guys, good to hear from all of you!

Texasdave, sorry about your personal life, remember, everything happens for a reason. You'll be Hep C free and ready to move on.

Mario, I think I was surfing the net the one day looking for Hep C info and actually came across your story. Very gutsy of you, and very much appreciated. It does seem Hep C plays second fiddle to HIV. Not sure why that is, Magic Johnson and others have helped that cause.

There is a stigma to the disease, I could never reveal it at my work. It affects my thinking as well, like retirement planning, stuff like that, the question always pops into my head, will I be here then? Can't wait to get hat monkey off my shoulder!

Welcome catniss! I totally relate to the endorphins, LOL.

I remember when I told my wife I had Hep C back when we were just dating, I was scared she would give me the heave ho, but instead she married me. I am sure there are days she wishes she had that one back, LOL! I am a lucky guy as she puts up with a lot of my shit, including all the Hep C stuff.

JillLynn, that's pretty cool you were on the radio. Hep C affects so many people, just look at the diversity on here, for example. I wish there wasn't such a stigma.

Anyway, good to hear from all you guys. I just took pill number 8 today. Can't wait to be over this dreaded disease.

Enjoy the weekend getting ready for Christmas/Holidays.

John.

icantwait · « **Reply #125 on:** December 20, 2014, 10:16:48 am »

I am grateful to be alive today. I got the decease in 1979 as a package deal with hep B. It was not fun going through heroin withdrawal with a bilirubin count of 29. That did get me to change addictions. Three years ago I walked into detox with a blood alcohol of 0.407 and I was purple from the PCT and Cryoglobulinemia. For me, the treatment is clearing up the wreckage of my past.
I am open about my alcoholic recovery if it comes up in conversation. If I can help one person give up the fight against addiction and seek treatment it is worth it. Other than my wife, children and health care providers, I have hidden my HCV status. Many people shun those with hep C and think it can be passed on easily. I was married to my late wife for 25 years and never passed it on to her or my children. I have finally told my brothers and sisters after I started the Harvoni. I am chicken and may be more open if I make SVR24.
It is day 9 and I have had no side effects. I am F3 and first week AST 15, ALT 13, Bili 0.4 down from 25, 23, 0.5. My issue is the a2-macroglobulin which I will not get until week 4 with the VL. I felt more energy after day 4, but I have had good days since becoming sober. I still have leg edema. Patience Grasshopper.
Thank you all for sharing. Today is a beautiful day and I will enjoy each moment of it.

KathyNJ · « **Reply #126 on:** December 21, 2014, 12:37:19 am »

Has anyone on this blog heard or used Fibroscan? It is a non-invasive liver scan that can tell what stage your liver is at without going through the painful needle liver biopsy. Cost is only about $200 vs $2,000 for needle biopsy. In Nj the only place to go is St michaels Hospital in Newark -- way too far from me. I wonder if any private doctors in south NJ have one. Also a blood test called Fibrosure, which measures some abnormalities in the blood that relate to the liver -- maybe the tumor marker test blood test that my Dr. Schedules is the same thing. If anyone knows about these tests, please let me know. Getting into the Holiday Season by swallowing my orange "mink coat" pill every night. Basically symptom free! Compared to interferon this is a cakewalk. Keep the faith fellow hoppers!

Lynn K · « **Reply #127 on:** December 21, 2014, 01:11:57 am »

I have done a fibroscan but in Seattle. Quick question if you ar already on treatment why the fibroscan?

BattleTheBeast · « **Reply #128 on:** December 21, 2014, 01:45:34 am »

I had the fibrosure done at LabCorp. Don't you have copies of your blood test results? It's pretty clearly marked on the results. It will say "HCV FibroSURE" and have the results below.

If it's something you really want the Insurance Company may not cover it because it's still considered experimental. Just ask your doctor to add it to the list next time you have your VL taken.

If you are on treatment you really don't need these right now and I would definitely not just get a biopsy unless it was absolutely mandatory!

Mel

catniss · « **Reply #129 on:** December 21, 2014, 07:46:27 am »

Kathynj
My new doc told me about these tests and said they do those all the time versus the liver biopsy. She said they very seldom do biopsy any more. My liver biopsy that I had done last summer was a cake walk and I have a very low tolerance to pain. Didn't feel a thing and no pain afterwards. It was a hassle to have to lie still in the hospital for 8 hours then total bed rest for 3 days afterward. My insurance picked up 100% of tab.

mario555 · « **Reply #130 on:** December 21, 2014, 08:39:05 am »

Catniss, you must be way tougher than me with your biopsy! I've had 2 over the years and both were a terrible experience! It hurts an awful lot, you can feel the 'stabbing' and the doctor repeats it 2-3 times. On the other hand, fibroscan is non-invasive, rapid and appears to be exact (I did it twice in 2 weeks and got the same results). I would definitely suggest to try and find one of those machines rather than being stabbed again with a biopsy...

catniss · « **Reply #131 on:** December 21, 2014, 08:59:39 am »

Mario
I have a very low tolerance for pain. I was deathly afraid of the biopsy that is why I put it off for so long. I felt nothing. I actually asked the doc to show me what she had taken because I did not think she did anything. She showed me a little jar filled with what looked like water and a tiny piece of liver floating in it. I know weird right.

John3333 · « **Reply #132 on:** December 21, 2014, 11:00:24 am »

Good morning guys!

I had a biopsy done in 2003 I think. It was pretty easy, although the doctor was supervising a resident who actually did the needle work which freaked me out a little. If I recall, they gave me a general around the area where they stick the needle in, and they guide it with ultrasound I think. Anyway, mine went smooth, but any invasive procedure is a risk. If you are getting treated with Harvoni, I am not sure of the need at this point.

@icantwait, congrats on your sobriety! Yes, carrying the message of hope will help you stay sober for sure. Not many people know about my HCV status either, in fact, I broke the news to my mother in law the other day, she seemed to take it in stride. She's been battling breast cancer for 6 or 7 years now, so she gets it.

Just took my 9th pill, if this is it for sides, piece of cake. What a miracle drug compared to the Int/rib!

HHburme · « **Reply #133 on:** December 21, 2014, 12:38:43 pm »

John3333...........#9 #9 #9 9th H pill for me today also !!! Smooth sailing so far.
KathyNJ..........Love your "mink coat" Mel........love all your comments, so supportive and caring catniss.......I'm wit ya and Dr bob too
I've had 2 liver biopsy also, 2004 and 2009. Really don't like like the procedure and told my Dr that I did not want a another. They did a blood test called fibrosure last month. Don't really know how accurate it is, just saying

Fight the Good Fight

KathyNJ · « **Reply #134 on:** December 21, 2014, 03:14:58 pm »

Thank you guys for all the information about the Fibroscan and Fibrosure blood tests. I had a regular needle biopsy done last year and it wasn't as bad as in times past. Not that I need a new one, but wish the Fibroscan had been available last year. I am learning so much from the great people on this blog (like I said before you learn more from people with hep c than you do from your doctor). I tried finding a support group in the past but none existed where I live. Why is this disease so shrouded from exposure -- they have all kinds of alcohol/narcotics/diabetes/cancer support groups -- but almost none for hep c. We all have stories and experiences that we would gladly share with those newly diagnosed, but our only forum is through these blogs. Checked my blood tests and never was given a blood test with Fibrosure scoring. Mine were just viral load tests. I guess every doctor (mine is a gastro specialist, not a hepatologist) does their own thing. Good luck to all of you as we go into the holiday season. Our gift of good health is waiting for us in 2015.

John3333 · « **Reply #135 on:** December 23, 2014, 11:29:34 am »

Hi guys, HHburne, glad to know some one is right with me!

Last night I woke up in the middle of the night with a pounding headache and little diarrhea. I am not sure if it's because I have a cold, which, given my whole house has been sick one right after the other, is certainly a possibility. I feel a little better now, took my pill this morning, I was scared I was going to puke it up, but no problems. Nothing is going to keep me from taking the damn pill!!!

Anyway, keep up the fight, we'll all get cured of this sneaky awful virus!

HHburme · « **Reply #136 on:** December 23, 2014, 12:00:19 pm »

J3.... bad headache last night for me too, thinking it is from my BP which has increased since tx. I'm right wit ya buddy, nothing stopping this Harvoni train !!
fight the good fight !!

Tutu · « **Reply #137 on:** December 23, 2014, 01:10:50 pm »

Quote from: mario555 on December 21, 2014, 08:39:05 am

Catniss, you must be way tougher than me with your biopsy! I've had 2 over the years and both were a terrible experience! It hurts an awful lot, you can feel the 'stabbing' and the doctor repeats it 2-3 times. On the other hand, fibroscan is non-invasive, rapid and appears to be exact (I did it twice in 2 weeks and got the same results). I would definitely suggest to try and find one of those machines rather than being stabbed again with a biopsy...

I'm with you Mario, I have had 3 biopsies the first one didn't feel a thing the last 2 were terribly painful. I am on Day 13 and have been feeling ok I do notice if I don't drink enough water then I get the headaches. Has anyone else had any intestinal issues with this med? I'm finding I have to take Citracel a couple of times a week. I also think maybe I should have my BP checked since there are other people BP has been higher since starting this stuff.
This by far is the best Christmas gift I could have received just to be healthy again. I am anxiously awaiting my first blood draw in early Jan. 2 weeks down 10 more to go but hey who's counting!

Tutu

mario555 · « **Reply #138 on:** December 23, 2014, 01:57:52 pm »

Thanks for the support about the pain associated with a biopsy. I was starting to feel a bit cry baby... My blood pressure shot up in the first 4 weeks but I took aggressive natural changes and my blood pressure is not lowered to 135/90. Too high but bearable. I walk at a medium pace 2x a day, lowered my salt intake, drink lots of water and most importantly, I don't let my renewed enthusiasm take over and have me try to do too much! I try to remain calm. I developed tintinnitis (sorry for the spelling, I hear things) and when the background noise increases, it means I'm losing my relaxed pace.
I'm now 6 weeks into Harvoni and I surprise myself undertaking activities I wouldn't have been capable of doing before (like going to my wife's business supper with a gang of drunken individuals)
When I take the pill at 4:30 each day, I have no more side effects to speak of. So go ahead future warriors, the treatment is fairly easily tolerated!

catniss · « **Reply #139 on:** December 23, 2014, 02:36:07 pm »

I am so sorry Mario if I made you feel bad about the biopsy. I did not mean to. You are a brave warrior fighting this horrible disease. My BP is high but I have white coat disease (meaning deathly afraid of any medical personal). Any kind of exercise is awesome for your BP and mental health. Just read an article stating just that. Took pill 19 and no side effects at all. Second months shipment of pills arriving Friday. For the people having stomach issues ginger or mint tea that could help. I drink loads of it. No stomach issues just love it. I'm kinda of a tea addict. Besides exercise I drink lemongrass tea for anxiety. Everyone have an awesome holiday!

catniss · « **Reply #140 on:** December 23, 2014, 07:15:37 pm »

Question for everyone. I feel like I am the only one waiting to get blood work until the end of treatment. Is anyone else waiting?

mario555 · « **Reply #141 on:** December 23, 2014, 08:54:40 pm »

It might be a good idea from your doctor to make you wait... I got my blood analysis done after 4 weeks and I still had fairly high enzymes (no VL yet). I compared my results with others in the group and I wasn't impressed! This is despite knowing Harvoni will punch through anything eventually. I'm in for 24 weeks but I still worried. This is maybe why your doctor said to wait??

badbradley · « **Reply #142 on:** December 23, 2014, 08:58:29 pm »

Hello catniss,
I'm holding my breath right along with you! EOT 11/10, labs on 2/3. Lately been humming that tune by The Beatles - there will be an answer "Let It Be".
When are your labs?

Quote from: catniss on December 23, 2014, 07:15:37 pm

Question for everyone. I feel like I am the only one waiting to get blood work until the end of treatment. Is anyone else waiting?

Lynn K · « **Reply #143 on:** December 23, 2014, 09:05:16 pm »

Hi catniss

That does seem unusual at least to monitor you other blood counts to make sure you are ok on treatment.

Sorry haven't read the whole thread is there a reason your doctor has said he doesn't at least want to monitor your liver functions and blood counts to ensure you aren't having any unusual reactions to treatment?

Best to you
Lynn

Lynn K · « **Reply #144 on:** December 23, 2014, 09:13:03 pm »

Hi again catniss

OK so I read up and see you are treating for 8 weeks and are fairly healthy.

Yeah I wouldn't worry about not being tested really you are only talking about one test at 4 weeks they aren't doing and by the time the got your results you would only have 3 weeks to go anyway.

The big test for all the marbles is the one 20 weeks after you started aka 12 weeks post treatment. If you are SVR12 (sustained viral response) you are cured yay!!!

KathyNJ · « **Reply #145 on:** December 24, 2014, 12:26:38 am »

Hi Catniss,
My doctor is exactly like your doctor. He says to only do blood tests for everything after treatment (for me it is an 8 week course of treatment). My viral load is a little over one million and liver is still at stage zero -- no scarring. I do have anemia from hep c but they consider it mild. No treatment needed. I'm wondering if anemia goes away after the hep c is gone. I never did question the doctor about the blood testing time schedule until I read about all the various blood tests people are taking. I'm just two weeks into treatment and so far no side effects. It's no different than taking a vitamin pill. Hope the next six weeks are the same. Maybe because we are on a shorter treatment course, they just wait till it's completed. Merry Christmas to all and without a doubt, it's going to be a great New Year for all of us on Harvoni.

catniss · « **Reply #146 on:** December 24, 2014, 03:00:09 am »

Thanks for the input everyone.
Badbradley: having first bw done at end of treatment at 8 weeks then again at 14 weeks then final done at 20.
Feeling great and in pretty good shape so I guess that is why no labs. I imagine if I was feeling bad they might do some. Thanks for the earworm yes I am going to let it be

Mario: yes I am a worry wort just going to keep on pushing thru
Merry Christmas everyone

JillLynn · « **Reply #147 on:** December 24, 2014, 10:06:49 am »

there will be an answer "Let it Be".....perfect song Brad!

Merry Christmas to all of you!

Islandgirl · « **Reply #148 on:** December 25, 2014, 11:24:46 pm »

A Very Merry Christmas from me too and welcome to those of you I haven't met yet![size=pt] I've been off line for a while and am now on day 23 of treatment and minimal side effects so far - hard to believe I'm already this far along - seems like just a day or so ago that I took my first pill! My insurance approved my second bottle of Harvoni and TLC got it to me Tuesday - New Year's Eve I have labs done and take the last of the first bottle. Starting my New Year right by opening the second bottle! One more after that to go. Yes, "Let it Be" is the perfect song:) Wishing us all the good fortune of being able to say "cured" in 2015! .....Islandgirl

Hey, Texasdave, you still in Chicago? Thinking of you and hoping you're doing well

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BattleTheBeast · « **Reply #149 on:** December 26, 2014, 12:45:39 am »

Hey Island Girl,

Nice to hear from you, Merry Christmas to you as well. Sounds like you are doing well and ready for the New Year! I couldn't agree more, wishing everyone the good fortune to be able to say "cured" in 2015!

Mel

Texasdave · « **Reply #150 on:** December 26, 2014, 07:37:36 am »

Good Morning Everyone !

Merry Christmas (ok, a day late) to All. I hope all of you had a great Christmas and are looking forward to an awesome, HEP-Free year.

Island girl: So glad to hear you are doing well. What a great way to kick in the new year cracking open that bottle of Harvoni ! I'm back home in Houston where it's much warmer, thank goodness.

Today is day 12 for me - no problems at all so far. Feel great... all's well.

Ya'll have a great day and let's get this done.

Dave

catniss · « **Reply #151 on:** December 26, 2014, 08:09:08 am »

Receiving my second and last bottle of freedom today. Like island girl taking my last pill of bottle 1 on new years eve. Every morning when I take my orange dose of happiness I sometimes get overwhelmed at the thought of being hep c free. I love imagining the harvoni dropping down into my body and exploding like a daisy cutter whipping out hep c. Have an awesome day everyone!

BattleTheBeast · « **Reply #152 on:** December 26, 2014, 09:48:30 am »

Morning Dave and Catniss

Dave, so good to hear you made it home safely with your Orange Pills in tact! Hope you had a Merry Christmas and it's awesome to hear when someone is breezing through treatment. It makes me smile in my misery!

Catniss, you get to start the new year like IslandGirl, how fun is that? Magic Pill for 2015, the year that's going to bring SVR to almost all of us. We have pretty good odds going and I'd bet on this team for sure!

Have a great Friday,

Mel

Islandgirl · « **Reply #153 on:** December 26, 2014, 10:14:33 am »

Good morning everyone!

Mel, I could just 'ditto" everything on your email, and Catniss, I got cold chills and tearful (the good kind) when I read that you will be starting on your last bottle of freedom as I start my next to the last bottle! Texasdave, welcome home, I'm/we're glad to hear you are doing so well, and back out of the land of snow. Mel, you bring so much to us all in spite of your own "misery" that I'm always in awe and say an extra prayer that it will be a better day for you each day.

For some reason, I woke up feeling alone and lonely, but logged in and here you all are and I know I'm not alone in this. I'm sure it's just the emotional swings of treatment, the Holiday, whatever, but I'm very grateful to have my forum family - thanks for always being there. ....Islandgirl

catniss · « **Reply #154 on:** December 26, 2014, 10:21:42 am »

Island girl
You are never alone. We are all somewhere out there fighting the good fight with you.
Catniss

BattleTheBeast · « **Reply #155 on:** December 26, 2014, 10:50:10 am »

{{{{{{{ISLANDGIRL}}}}}}}

Sending you a big hug from New Jersey!

Islandgirl · « **Reply #156 on:** December 26, 2014, 11:23:28 am »

Thanks so much guys, I needed that! Hugs back!!

Alaskagirl · « **Reply #157 on:** December 26, 2014, 03:23:36 pm »

I'm new to this forum.

Starting week 7 of Harvoni. I have had periods with the waves of extreme fatigue, primarily within the first few weeks. I also had an odd, throbbing joint pain in those first weeks, which moved around (now my ankle, then ten minutes later my wrist, then a knee...). Mentally I just told myself that the medication was moving around my body, eradicating viral "safe houses" within my joints. Yes, I know that logically it doesn't work like that, but it helped me to not get panicky. I haven't noticed any of that burning joint pain for some weeks now.

I have more energy than when I started (I'm going to the gym again, and walk my dog for an hour or two each day), but still have moments in which my thinking feels "thick" and I want to lie down where I'm standing, and rest...I took FMLA leave at work, but am just keeping it "in my pocket" so that I can take an hour here and there to rest if I need to.

I've been far more open about this at my work than I intended. It is the most meaningful and important thing in my life right now, and I just decided "screw the secrecy" and told many of my co-workers. Hep C is so stigmatized that I've kept it a secret my whole life - I'm done... Having access to a true treatment has radicalized and empowered me.

I've had Hep C since I was 16, so 32 years.

My most recent blood test shows my viral count as undetectable, but we'll see if it sticks. I am - of course - nervous about being part of that little 2%, but that's just the part of me that is scared. I'm so hopeful that it will work, and that I can let go of all the fear and limitation that has accompanied this disease - assuming that my life span would be limited and making choices based on that belief.

So, occasional super-fatigue and roving throbbing joint pain. No headaches.

Islandgirl · « **Reply #158 on:** December 26, 2014, 07:11:30 pm »

Hi Alaskagirl, and welcome!

You'll find lots of support here and from the people at the Harvoni Support Path and lots of other sources. I do think you'll feel more relaxed and less fearful if you find someone to help you work through your fear. It sounds like you're doing great but are afraid to trust it and are sort of sabotaging yourself emotionally. I hear a brave strong woman in there who is doing wonderfully, but the whisper of doubt and negativity girl is trying to kick her butt.

I think all of go through this in one form or another and just have to find healthy ways to get up past it. Fear isn't usually a rational foe we can always battle without professional help, but without getting past it we're letting it pour more poison into our bodies and minds. I've had Hep C since a blood transfusion 35 years ago so I certainly identify with where you are - we've walked in each others shoes though we never met; doesn't matter how we got it, it's still been a major chunk of our life span and it's time to let it and the fear go. Not preaching to you hon, just hoping you will find a way to not let the fear diminish your accomplishment and the joy of finally being able to say "cured". I'm giving myself this same message, BTW

, guess I needed it too! ....Islandgirl

catniss · « **Reply #159 on:** December 26, 2014, 07:29:20 pm »

Islandgirl: when you wrote that it sounds like alaskagirl was doing great but that she is having a hard time trusting that feeling you hit the nail on the head for me. I have felt great since starting harvoni and can't believe that this orange pill is going to wipe out this disease from my body. But I know it is. That goes for you to alaskagirl.

Islandgirl · « **Reply #160 on:** December 26, 2014, 07:52:11 pm »

Catniss, after I posted that I found myself hoping I hadn't come on too strong, but I also realized I was "reading between the lines" responding to what I sensed was happening with Alaskagirl, with so many of us, and I wrote from the heart. Fear is a poison and can be paralyzing - we can't let it win - we deserve better. The men and women who connect on this forum are all brave and strong, but we are human and vulnerable as well. Together, we can help each other through what for most of us has been a very lonely and fearful journey. Trust? Damn, it's a hard thing to do, but we're in a safe place here. ....Islandgirl

BattleTheBeast · « **Reply #161 on:** December 26, 2014, 07:55:12 pm »

We are a funny bunch here, bonded for life by this awful infection but the positive for me is that it brought me to all of you. On my down days you are there to lift me and on your down days I will lift you. If we are both down then we will drag each other up or someone else will come along and rescue us.

The best time is when we are all up and happy; that's going to be when we are SVR and we will all get there one step at a time.

Mel

RiseUp · « **Reply #162 on:** December 26, 2014, 07:57:34 pm »

Hi Mel, how are you today?

catniss · « **Reply #163 on:** December 26, 2014, 08:01:05 pm »

Absolutely Mel absolutely

Islandgirl · « **Reply #164 on:** December 26, 2014, 08:05:10 pm »

You always hit it right on, Mel! What would we do without our Mel - hope you're feeling well today - we love you! ...Islandgirl

John3333 · « **Reply #165 on:** December 26, 2014, 08:29:24 pm »

Quote from: catniss on December 23, 2014, 07:15:37 pm

Question for everyone. I feel like I am the only one waiting to get blood work until the end of treatment. Is anyone else waiting?

Hi catniss my doctor is making me wait until the end of treatment as well, (12 weeks). I really didn't ask her why since I was there picking up the Harvoni. I was so excited to get the pills I really didn't give it much thought. I felt like I had just robbed a bank and I wanted to get the hell out of there, LOL. I do remember her saying that she had attended a liver conference and that's what they were starting to recommend. Maybe because just about everyone will finish the treatment regardless, and with 95% success rate, why bother getting the blood work done halfway through I guess.

HHburne, glad your right with me, day 14 today. I am noticing that the headaches are becoming less and less of an issue. Like catniss, I am having trouble wrapping my head around the fact that this one pill with little to no sides is going to cure me of the the Hep C. I worry I will be one of the 5% that doesn't clear the virus, but if that's what is meant to be, then so be it. I think we are gaining on the beast very quickly now, and within 5 years there will be 100% treatments out there.

I read all the posts, appreciate you guys with the honesty, lots of love and support here, it's great! We never have to be alone when dealing with this.

Merry Christmas and Happy Holidays to all you guys.

John.

John3333 · « **Reply #166 on:** December 26, 2014, 08:37:47 pm »

@islandgirl, when you mentioned "that last bottle of freedom" an image if Mel Gibson in the movie Braveheart popped into my head. Remember, when he is standing there screaming FREEDOM at the top of his lungs.

That will be us soon, can't wait!

catniss · « **Reply #167 on:** December 26, 2014, 08:41:57 pm »

That is exactly what I was thinking john3333. Received my second and last bottle today.

Islandgirl · « **Reply #168 on:** December 26, 2014, 08:52:35 pm »

John3333, LOVE IT!!!!!!!!!! That image and that FREEDOM scream is etched in my mind!
...Islandgirl

readynow · « **Reply #169 on:** December 27, 2014, 07:14:24 pm »

Hello:
Going to take the first pill tonight. Been waiting for this for years. Time has come today.

Islandgirl · « **Reply #170 on:** December 27, 2014, 08:01:48 pm »

Welcome, readynow! Congratulations and thanks for joining us as we move toward our mutual goal. I agree, the time has come - I wish you an easy time and a complete cure. I'm excited for you ....Islandgirl

BattleTheBeast · « **Reply #171 on:** December 27, 2014, 08:02:25 pm »

IslandGirl - I love you too Sister!

Readynow, Welcome, great name and congratulations. It's such an amazing feeling to take that first pill isn't? I really think anyone who has been there totally gets it and as usual the rest of the world thinks we have lost our minds, That's ok, I need to be a little more mindless once in a while!

Thinking about 2015 and how much happiness it's going to bring to most of us and beyond grateful to all of you! Remember to do something kind for someone else whenever you can, it doesn't have to be financial in nature, it can be as simple as a smile or hello to someone lonely!

Now I am going to sit back and imagine my forum sisters and brothers all holding hands on top of a mountain screaming FREEDOM!

Mel

catniss · « **Reply #172 on:** December 27, 2014, 08:52:37 pm »

Readynow
Welcome!

Islandgirl · « **Reply #173 on:** December 27, 2014, 09:24:55 pm »

Mel, thank you; it's no wonder I/we love and appreciate my/our NJ sis!

I totally agree with you on doing something kind when we can. Being petite, I often have asked someone taller to reach something for me in a store - I'm not shy about asking nicely but many elderly or disabled people struggle but won't ask. Offering to help is such a small thing and one that gives us a good feeling too. We could all think of a million things that lift another's spirits and cost us nothing but a moment of time. Thanks for reminding us, Mel. Besides, it's healthy for our own body and spirit when we are kind and considerate to ourselves and others! ...Islandgirl

matradee124 · « **Reply #174 on:** December 27, 2014, 09:54:03 pm »

Very nice

Islandgirl · « **Reply #175 on:** December 27, 2014, 10:35:36 pm »

Thanks, matradee124

catniss · « **Reply #176 on:** December 28, 2014, 07:57:54 am »

We have more one than one thing in common islandgirl. I am also petite(4ft8in). I often wear tall heels(my friends call them hooker heels) when shopping and still have to ask for help. I have worked for a large nonprofit charity organization for 12 years. It does feel awesome when you can pay it forward.

matradee124 · « **Reply #177 on:** December 28, 2014, 08:05:48 am »

Scorpio good luck congrats on ur time as the program teaches us 1 day at a time pray and God is good I have 32 pills to go my blood work came back Undetected we r all Blessed this Fourm gave me the strength to Believe I was not alone hamels to the Red Sox another pennet for u guys

Islandgirl · « **Reply #178 on:** December 28, 2014, 11:57:41 am »

Catniss, I think we're both blonde too? I used to love wearing heels like that, still love them but have problems with an old injury to my right ankle so now only wear them when when I can mostly sit. I'm right at 5', was 5'1-3/4.

Scorpio, how are you? Where are you? Haven't heard from you in a while. If I have pizza now, I always think about you

Wish I could have sent you some of the turkey soup I made yesterday - tons of veggies in it too. My (long term) boyfriend's son (who calls me mom and is staying with me this week) told me it tasted too good to be" healthy food". Since I can't send it to you, I'll send you a big cyber hug

Check in, I know matradee124 and I are not the only ones who want to hear from you! ....Islandgirl

readynow · « **Reply #179 on:** December 28, 2014, 05:50:40 pm »

Hi all:

Well the first day dose wasn't bad. I couldn't fall asleep, so just tried to rest most of the night. I felt it coming on strong, but it wasn't really unpleasant. I'm ready for round two. Appreciate the welcoming words.

Islandgirl · « **Reply #180 on:** December 28, 2014, 06:28:20 pm »

Good for you, readynow!
My cell phone alarm set for 6:00 EST rang to let me know it was time to take my 26th magic pill and then I logged on to see your post and it made me happy to know you've taken the first step on the Harvoni path to a new healthy you! Keep your spirits up and stay positive - you're on your way!! ....Islandgirl

catniss · « **Reply #181 on:** December 28, 2014, 06:36:14 pm »

Ready now
My first week of treatment I was a wreck mentally. At my two week nurse appointment my blood pressure was so high she was talking blood pressure meds(I refused). Now I'm on day 26 and have calmed down a little. I have had no side effects and only have to take for 8 weeks. Just so excited and nervous to finally be free. I am kilt shopping for April.

Tutu · « **Reply #182 on:** December 28, 2014, 09:26:02 pm »

Quote from: catniss on December 27, 2014, 08:52:37 pm

Readynow
Welcome!

Welcome readynow! This is an awesome site because we all relate to HepC ! You are not alone good luck on your journey I am on Day 18 and besides the fatigue feeling ok. Drink lots of water and try to get out for a 15-20 min walk everyday( this has really helped me). Let us know how you're doing.

readynow · « **Reply #183 on:** December 29, 2014, 06:18:52 am »

Hi: Feel pretty good today. Gonna go to work and I will make it through the day. (Positive thinking). Have a good day everyone.

Islandgirl · « **Reply #184 on:** December 29, 2014, 01:15:39 pm »

I saw this earlier today and wanted to share it with everyone, it really hit home with me (if the first word bothers anyone, substitute what works - you get the concept)

KISS YOUR LIFE
Accept it just as it is.
Today. Now. So that those moments of happiness you're waiting for do not pass you by. Kiss your life. Today. Now. Just as it is.

.....Islandgirl

matradee124 · « **Reply #185 on:** December 29, 2014, 03:23:00 pm »

Very nice island Girl happy new year young lady

Alaskagirl · « **Reply #186 on:** December 29, 2014, 06:35:09 pm »

IslandGirl -

I think you did read a little bit more between the lines of my message than was there...

I think it is important that we can talk openly about things like worrying that we will be in the 2% that the miracle cure doesn't cure without it being read as self-sabotage. I believe that anyone facing such a round and promising statistic (98%) will have a moment in which they thing "S***, I sure hope I'm not the 2%." I don't think that this means they need to seek professional help to mitigate their fear...

I (like many of us, I'm sure) identify as very brave. Braver than most. I've lived with this disease my whole life, and it has not stopped me from travelling the world, birthing and raising amazing children, climbing mountains, sailing foreign seas, playing in bands, taking risks... What I was trying to talk about (and I'm willing to take responsibility that maybe I wasn't clear) is that every time we do something that transcends the "reasonable limitations" that most folks would put on living with a life threatening illness, it requires that we work through an imposed fear, and that being "cured" and having that go away in only 8 weeks after carrying it for decades, is a dizzying reality.

What will be different should I be entirely cured? I will no longer have to be conscious of having excellent health insurance, and could choose to leave my profession. I will no longer have to research/be aware of traveling/living in third world countries and the availability of medical care. I will be able to count on twenty additional years of vital lifespan. I won't have to inform all my adventure partners that I carry Hep C before undertaking wilderness trips so that they know to use the gloves in my first aid kit if I am injured. I don't have to have "the talk" with prospective romantic partners in which I first must debunk the belief that it is an STD, and then must explain that should they get involved with me, they would potentially have to move through illness challenges with me. I will be able to drink alcohol if I choose, without guilt or reservation - something I've never done.

So, what I'm dealing with (and many of us probably are) is a giant aspect of my being and lifestyle will (God willing) soon just be a distant memory, and I'll be constructing my life and making choices from scratch. My life will be an open and spacious vista, with which I can do anything I choose. And that is exhilarating, and thrilling, and just a little bit scary. But the scary is a teeny drop of water in an ocean of exhilarating, so no biggie.

As to "sabotaging my cure" with fear, not so much. I came into it in excellent health, I'm doing all positive things to surround and support my treatment (eating clean, daily exercise, no toxins, body work, spiritual work). I am surrounded by loving people who are giving lots of positive support. And, if for any reason, this treatment doesn't stick, I'm sure that it represents some mysterious destiny that God intends. I can't imagine that anyone facing something with so much hope and promise wouldn't worry that it might not work for them; to assume that you are automatically part of the 98% strikes me as a little bit...well...entitled. If those are the stats, then out of 100 of us, it will not work for 2 of us. And with all of us having waited so long for a cure, I send love and compassion to whoever those 2 are and recognize that it could easily be me...

that's just the pragmatist in me, not counting my chickens and all. Not throwing the party until the day of the party... but in my day to day reality I am full of joy, and the zinging dancing energy of hope...

Islandgirl · « **Reply #187 on:** December 29, 2014, 08:04:11 pm »

Thanks for writing back, Alaskagirl.

First, let me say that I didn't mean to imply that you, personally, needed professional help - so I apologize if it sounded that way. Many times I write in a way that whoever reads it, or needs it, may hopefully benefit -and that can include myself.

WOW!!!!! You have certainly led quite a life. and you are an excellent writer!

Most of us can certainly identify with the things you wrote about your life with Hep C - we've lived it in one way or another too, and face those same challenges - many of us have far greater challenges than you or I from what I've learned on the forum. One does not diminish the other. We are all in this together striving for the same goal.

As far as "self-sabotage", everyone does that at sometime whether they realize it or not. This was not targeting you personally other than to alert you to the possibility - we all need to watch for this. It's unfortunate that I made you feel you had to defend yourself. It sounds like you're doing great and I wish you only good things. ....Islandgirl

Islandgirl · « **Reply #188 on:** December 29, 2014, 08:08:44 pm »

Thanks matradee124, and right back atcha, young man!

matradee124 · « **Reply #189 on:** December 29, 2014, 08:28:12 pm »

Island girl u probley surf u r 1 postive woman--

NICE

Islandgirl · « **Reply #190 on:** December 29, 2014, 09:08:50 pm »

Island girl, yes; surfer, no; positive woman - always my goal
It's working better for me with all the help and encouragement from my Harvoni family here on the forum, and that includes you, matradee124 Thanks!
....Islandgirl

matradee124 · « **Reply #191 on:** December 29, 2014, 09:35:20 pm »

And thank u my son taught FGC 1 year what part of fla u at I'm in philly

Islandgirl · « **Reply #192 on:** December 29, 2014, 09:44:13 pm »

NE FL - St. Augustine area. I spent most of my growing up years in Hawaii so the Island life is most natural to me. ....Islandgirl

matradee124 · « **Reply #193 on:** December 29, 2014, 09:46:43 pm »

Bet a nice tan sun no good on meds aloha

Islandgirl · « **Reply #194 on:** December 29, 2014, 10:05:31 pm »

Hopefully meds will be over before summer for sure! Aloha back, matradee124

Hey Scorpio, if you're still on, write and let us know how you are doing!

....Islandgirl

matradee124 · « **Reply #195 on:** December 29, 2014, 10:08:30 pm »

;)Sleep tight talk to u tomorrow thank u I'm also Scorpio

Islandgirl · « **Reply #196 on:** December 29, 2014, 10:12:45 pm »

I'm laughing, but so not fair, "also Scorpio"! Sleep well, I'm off for the night - my boyfriend is getting in from NC and just called to say he's almost here. Have a Happy New Year if I don't get a chance to check in as much as usual. ...Islandgirl

matradee124 · « **Reply #197 on:** December 29, 2014, 10:17:39 pm »

Quality time for u guys have a gd Ngt an a happy new year to u to

scorpio · « **Reply #198 on:** December 29, 2014, 10:33:50 pm »

Happy holidays to everyone!! Havnt been on in a while but glad to see so many new peeps got approved and are joining us.

Ill be catching up on reading through the posts tonight but for now just a quick venting sesh..

So i get a letter from xpress scripts sayin suttin like my doc. has to get me reapproved and for me to have him contact them or i will be responsible for last 2 bottles of harvoni.. I call xpress, lady told me i was good and she found nothing wrong... Couple days go by and i get another letter. So turns out xpress is not using caremark anymore and went with acredo for specialty pharmacy.. My doc office told me they would call them and square it away and call me back. Fast forward 1 week and still waiting for a call. I called again today and he tells me same thing (he would call them and call back) never did... so i called acredo my self and they claim they just got the script from my dr. office today.. Hmmmmm

Somebody messed up and i dont like it. My last pill of first bottle i take tomorrow and acredo says it takes 72 hours just to process it nevermind the 1 or 2 day shipping.. So basically i could go a couple days taking none which really pisses me off. Unless doc has samples, which I would have known, if his useless assistant called me back. Im calling bright and early tomorrow to get to the bottom of this..

Other than that, 27th day and feel good most days. Headache and fatique come and go. New years starts clean eating and back to gym for this guy.

Thank u for lettin me share my misfortunes and welcome to the newcomers..

Islandgirl · « **Reply #199 on:** December 29, 2014, 10:45:52 pm »

Thanks

Sounds like you're doing well, in spite of everything - that's a happy thing! Tomorrow is 27th day for me too. Starting the New Year with bottle 2:) Good luck!!!!!!!!!!!!!!!
...Islandgirl (in response to both of your last posts)

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