Just an update on my husband. He did shot #10 Wednesday, and doing pretty good. Tired, but not sleeping all day every day like he had been. He got to quit taking Imuran, and doctor is slowly weaning him off prednisone (for the autoimmune hep) and switched him to cyclosporine. Hoping the cyclosporine does better than the pred, and with less side effects. He's feeling better already with the lower dose of pred, and doesn't need to take as much insulin, so that's good news. Still no riba, just interferon. ALTs in the three hundreds now, and hoping they'll continue to come down.

June 20th: My husband is still so sick. He throws up two or three times every day. He's taking the fenergan (1/2pill at a time) and it puts him to sleep, but the minute he wakes up he's sick again, sometimes immediately running to the bathroom. He has this awful taste in his mouth that he can't get rid of, and he says that's the biggest part of what's making him so sick. .

Update Sept 9 Hubby is UD 40883.1 STILL UD NOV 13 41344.1 April 09 Last Shot 42658.1

Bama2034 Aka Bama 40493.1 New To our Site

Hi all! I feel like I know a lot of you from lurking in the dark for the past few months. I found out I was HCV+ in April. Being a computer nerd I immediately started my research and this site was the second one I came upon. My search ended as all of the people here are so sweet, sincere, informative and an all around great group of people. By the way I have heard it's alright to slap safetydan when things get rough. I am a 52 year young female from the south, genotype 1a stage 1 grade 1 with a vl of 2,130,000. I met my nurse last night and took my first shot. Awoke this morning with a terrible headache and a pain between my shoulders that has yet to go away. Achy flu feeling but it is managable. I don't want to get my hopes up that this is the worst I will feel because I know better. I just wanted to say hi to everyone and let you all know that I thank each and every one of you for easing my fears. I can beat this dragon!! And with the help from this forum I can also laugh alot! Bama

Update Aug 10 40697.1 Update Oct 25 41293.1 May 09 42448.1 UD TAA DAA Finally after 24 weeks of pegasys and ribavirin and then changed to infergen and ribavirin for last 12 weeks I am finally UD!!!!!!!!!!!!!!!Still have to do treatment thru December but it is working finally! Have started working from home because my white count dropped and was put on neupogen. I work in an office and don't want to catch any virus or flu so my boss is letting me work from home for the moment. He's such a great boss!! I've got that dragon on the run and I refuse to give up! Just wanted everyone to hear my news. Thank everyone for the encouragement people like me receive here at this site! God Bless!! Sonya (Bama)

barbtj aka Barb 2009

(((((((((((((((Family and Fellow Heppers))))))))))))

I want to share some good news. I haven't been on a lot lately so many of you don't know me, but I am 1 a and had a very high Viral count but was only able to do 20 wks of treatment for health problems.
However I just got my latest labs.
I am still UD!!!!!!!!!!!!!!!
I want to thank all of you for all your love, support, chats and encouragement over the last year. I love each and everyone of you and without you I would never have never made it.
I think of you all daily and I hope to catch you in chat soon.

I do have bad news but I see another specialist on Wednesday and hope I can whip the cancer.

Thank you all and words cannot tell you how happy I was to get UD- I have beat the DRAGON!!!

Hugs and Love,
Barbara

bella1950 AKA Bella

41006.1

Dear Friends,

I haven't posted in a while, actually since early July when I completed my 72-week treatment. I was so confident that it would work. The doc told me to get regular blood work in 2 months and if my liver scores were normal, it was a really good sign. Somehow, I lost the original lab order, so I had the orders faxed to the hospital where I get my blood work. The doctor's office sent an order for all the regular labs plus a viral load. Well, guess what....the liver scores were normal, but the virus was back! It's about 200,000. I was UD from 16 weeks to 72 weeks, and now it's back! I'm still in shock. So was my doctor. He said he'd only had one other patient (also a woman) who relapsed after 72 weeks, and she'd relapsed once before.

He told me that I should wait a while (maybe a year) and have another biopsy. He wasn't happy with the amount of tissue he got with the last one. He said he wouldn't treat met again, but would send me to University of Pennsylvania in Philly (about 2 hours from where I live) to see a doctor Reddy. Apparently, Dr. K. Rajender Reddy. Has anyone ever heard of him?

I'm so depressed. I know lots of you have been through treatment and relapsed. Any advice?? I thought I had my life back...now I feel like I just got kicked in the gut.

All-42720.1 May 09

First I want to thank each and every one of you for all your help, suggestions and most of all the support I received through this website over the past few Months.

As some of you know I have bee treating this disease through the Boceprovir trial. 1400MG Riba daily, 150/0.5ml Interferon, and 12 blue capsules of placebo or Boceprivire for the last 28 weeks.

I have been undectable since week 6 and yesterday was the critical weeek that I found out which arm of the trial I was in.

I was in Arm Two, received the Boceprivir and and was told that since I have been UD since at lease week 12, I am done with active treatment and the virus has been slayed!!

I am cautiously optimistic, as each month until I reach week 72, I will continue to have my labs drawn to make sure that this beast doesnt rear its ugly head.

Worst side effect for me personally, is the the extreme irritability. My fuse has been so short you would think that a glas od spilled milks was wasted liquid gold or something, so I finally took my wife into the DR. To explain my behavior, because apparently, although I tried to communicate my feeling effectively I was underestimating the effect this was having on family, friends and co-workers, so my wife was better able to give a reaslistic explanation to the Dr.s

I am now finally on Lexapro daily, supplemented with xanax and lorazepem only when anxiety levels are through the roof.

Mr Dr., Dr Bruce Bacon at St. Louis University Hospital is trully one of the pioneer's in this industry. He is one of a few Doctor's in the world that are truly committed to finding :

1) a cure

2) a vacccine so others like us do not have to go through this.

He shared with me that since my results have been so good with this combo treatment of SOC/Bocep right now my chances of SVR are at 80% and in six months if I remain virus free that jumps to 90%+

I highly recommend this DR. He, listens, cares, and his staff of Nurses truly care, you are simpoly not a "number" with them. They take a team approach and are fully supportive through the ups and downs of treatment.

So now, as I anxiously wait for my hair , appetite, weight, and sex drive to return and dry mouth to subside, I can't tell you how glad I am to no longer have to take umpteem pills a day and a shot a week.

Treatment certainly wasn't that bad for me, I had good days and bad, but on those bad days I came here to vent, ask questions and just decompress. I can't express enough how much this helps!

So to All of you Ann, Safety Dan and the many others who have replied to my posts- I thank each of you as you, from afar were intregal iin me keeping a positive attitude throughought this journey. I know its not done yet, but a GREAT Day for NOW!

74gibson aka Carolyn stage 1 grade 2/Geno 1 First Shot March 30th GO Carolyn /Four Week PCR soon/Feeling the deep bone aches. Apr 22nd Four week check up, shortness of breath is getting better 39721.1 Waiting to see if our girlfriend has a two log drop ((( Carolyn)))40046.1 Sep 4 labs 40881.1

Update July 2 CAROLYN IS UD>>>AT 12 wk PCR 40361.1 Getting on the right rescue drug Oct 15 41226.1 April 09 Feeling Great After Treatment 42453.1

Waiting for PCR ...Waiting for SVR

juanitacm38 AKA Juanita Im geno 1a so I have a year of this. Week 17 and my vl is down to 280 from 2.8 mil. June 5th Update:I just did my 23th shot yesterday. I'm almost half way there. Feeling really tired and my back hurts. I just quit smoking again and can feel the diffrents in my breathing already. I've gained 30 pounds on treatment. but I'm gratful has anyone else gained weight on treatment? thanks to you all Juanita

Update July 2 UD at 6 months on tx 40335.1 Update Aug 4 Half way through TX 40582.14 Update Side Effects Aug 20 40781.1 Update Aug 21 Awww Taken off treatment because of eye complications ((( Juanita ) 40781.9

kruthmills AKA Karen Update doing great April 18th 39665.1 New update Apr 25th 39754.1 ON A UP NOTE KAREN was voted Teacher of the Year 39741.1 GO KAREN!!!!!!!

Update from Karen June 17th 40268.1 May Still SVR 42819.1

mggieblue Margi starting end of April 08 Delayed for a week 39649.31 update, Margi starting 4/25, same day as Lisa/Mermassia! 39174.268 Delayed again until Next Friday May 2nd. First SHOT FRIDAY 39174.286 39815.9 June 3rd=Sadly our Margi was pulled off treatment , we are waiting for her PCR 39174.374 GOOD NEWS back on treatment!!!!! ((( Margi)))

June 10th: I was having a great day because I am alive and treating but now I am having a pout cuz I wanted to be an early responder and apparently I am not, I went from 680000 to 268000 or something like that in 4 weeks.... tell me its going to go down more and I will smile again :) sigh I worry too much

Update July 25 40576.1 (((( Margi Taken off Treatment))) 40576.21

ncgal42 June 09 42953.1

I finished my second round of TX 7/23/08 and had post labs done 11/08 and it showed I had relapsed. March 09 I had a 8 month post count done and it came up negative...imagine my shock as well as my doctors, so I was told to have another count done the last week of May....NEGATIVE. The doc said I am cleared for sure and to enjoy a nice long life. They can't explain it, my last tx was done at UNC and the doc said out of the hundreds or thousands they have treated it has probably only happened four or five times....so I say keep the faith and yes I do believe in miracles.

Catherine

04ultrarider Geno 3 Mike On Treatment Started March *Second Time Treating*First time 24wks PegIntron This time 48wks Pegasys. Down to 120 at five week PCR. 39661.1 Waiting for 8 wk. Week 12..he is UD. June 21th= Mike is on a bike ride with STEP! Update Aug 4 At 22 wks 40647.2 May 09 We are very sorry to tell you that mike did not reach SVR please go here to read his update 42842.1

Pureindy AKA Lisa Finished treatment see how great she is doing 39430.1

May 09- 42795.1 I haven't been on here in a very long time. That's not true, I just haven't posted for a long time. I said that I would stick around and support everyone after I finished tx. That didn't happen and I don't feel good about it.

My treatment ended last March. I did 30 weeks of peg/interferon and riba then, had a viral spike that surpassed my initial viral load. I did an additional 48 weeks of infergen. It was pretty tough and this site and it's members played a huge part in getting me to EOT.

When finished with tx, I felt unbelievably good. I had so much energy and was feeling incredibly healthy. The virus remained undetectable and my blood levels were great until January. I got the dreaded call from my gastro Dr. that I now have a viral load. I did not slay the dragon. It was a shock, because I was so sure. Even though this didn't work, I would've done tx again in a heartbeat. Now I will wait until better drugs come around and try again.

searanch27 aka Steve am geno 1a&1b with a viral load over 5 million. Biopsy showed grade 3, stage 3 July Update 1-3rd shot 40497.1 Jan 09 41951.1

I wanted to say thank you to everyone who wrote in when I found out that I might have to go off of therapy because my viral load went from 14k back up to 58k. Your encouragement was very much appreciated and it really helped knowing that you all knew exactly what I was going through.

The doc did pull me off of therapy and basically told me that under my circumstances that there currently is nothing on the market that would work for me. He said that my liver didn't feel inflamed and that all my numbers were very good (I have never had an issue with this and he has told me on more than one occasion that my numbers, minus alt and ast, are that of a normal person) He said that there are several therapies in the works and that until that time he will continue to monitor me via blood work and ultrasounds. He also went on to say that because I am coinfected (hiv and hep c) that the virus could come back to having a very high viral load in a matter of weeks, or it could be a matter of months. He told me that the main thing is that I have a postive attitude and that I basically was feeling great on treatment and thought that once I was off I would feel even better.

I did have a question too. Since I have not been taking the pegasys or ribavirin I have been EXTREMELY fatigued and have been getting headaches, I can't sleep, and have a slight pain in my back left side. The doc gave me some ambien to help with the sleeping, and said that the location of the pain really is nothing to do with my liver (says I might have stained myself lifting something), and that the fatigue should go away with time. Has any other people gone through these types of withdrawal symptoms? The only thing I want to do is sleep and I normally am not that type of person. I am active, fun, and energetic and not being able to do anything but sleep is making me crazy. Thoughts? suggestions?

- Star~ (Starbuck151 Anne Five Months To GO *has been on treatment since 2005. Break for six months and then began again. Keeping you in my thoughts. Anne had to stop the Riba for awhile. She protects us so. Not wanting to scare our new friends on treatment. Please go here and read how she is doing. 39736.1 Anne has updated us on her tx progress. Only missed one shot. Update Apr 30 39810.1 May 1 39174.283 (and she got a contract on her home!! yeah!)

Udate June 26th 40307.1 Updated Sep Finished treatment and having a difficult time 40885.1

Hello All,

I did shot 63 tonight and I am now down to 9 shots left until EOT.

UPDATE JULY 20

Good news, I am still UD at week 62, even with stopping the riba for 3 weeks and skipping one peg shot back at week 53.

The next 6-8 weeks are going to be very hectic for me so I may not be here as often as I would like. We have found our dreamhouse and our offer to purchase has been accepted! (EOT is Sept 9) UPDATED Aug 23 Anne has finished treatment !!!!!!40800.1

May 09 42402.1

UD!!!

YES YES YES!!!! JUST GOT THE NEWS TODAY!!!

UD 2 DAYS SHY OF 7 MONTHS EOT, OR IS THAT 6 MONTHS AND 29 DAYS SINCE EOT???

THINK YOUR CONFUSED....

IS THIS SVR YET???? HUH??? HUH???

OMG, I CAN'T BREATHE RIGHT YET!!

WHAT A WONDERFUL WEEK THIS HAS BEEN!!!

I LOVE YOU ALL.

THANK YOU GOD and FRIENDS!!

2008 April

Phase 2 Vertex 950

I can't believe I only have 3 days of Riba left! It was so great to fill up my pill dispenser for the week and be able to leave some days empty!!!

It's been a rough ride(who's treatment isn't?!?) but if I can hold onto that UD it will all have been worth it.

Iam1a, Stage2, Grade 1-2. I was in a 48 week arm. The first 24 weeks I took the standard treatment as well as the Telaprevir. The last 24 weeks have been standard treatment only.

They did not allow rescue drugs in the Prove 3 trial and I became anemic real quick...just like the last time I treated. Since Procrit wasn't an option they had to dose reduce/discontinue my Riba for most of the trial. I was only on full dose Riba for a few of the 48 weeks. It's been shown that Riba is a necessary part of the cocktail so I was VERY nervous. I wasn't able to get any VL results until my 24 week results. At that time I found out that I went from 12,500,000 on my start date to <30 by week 4! The first time I treated with SOC I didn't have a 2 log drop by week 13 and stopped. At that time I started with a much lower VL of 2,380,000. That just give's you an idea of how powerful these PI's are.

Vertex is continuing trails with the Telaprevir as well as 2 other PI's.

Vertex has submitted some late extracts regarding Prove 3 preliminary results to be presented at the EASL meeting in April. I have a feeling it's going to be more great news from Vertex.

I learned everything I needed to get me through the past 48 weeks right here on J&F and will always be grateful for this site and the people here.

I owe Karen a huge debt of gratitude. She has been there for me every day and when I didn't feel like talking to ANYONE, Karen was the exception. Thank you my friend. Now, we need to get you on a PI so we can start planning that trip!

A friend of mine has declared Thursday as "All bad things gone and only good things to come,day!";-)

Thanks again to everyone for the well wishes and hope to start posting again as my system starts to clear.

If anyone has any questions about the Prove 3 trail feel free to email me through my profile.

BTW, I LOVE VERTEX!!!

Denise...next stop SVR...

UPDATE April 30th 08

I just got the news today that my 4 week post VL is UD!! No Virus.

I wish they could speed things up so these PI's would become available for everyone.

I feel fantastic! My energy level is higher than it's been in years. The only leftover sx of treatment is a little brain fog....things like forgetting what I'm talking about mid-sentence and turning on my left signal to turn right :-) Other than that, I feel great!

SVR party in September!!!!

Update June 26th

Hi Everybody!

I got the news today that 12 weeks after my treatment in the Vertex Prove 3 trial ended I am still UNDETECTED!! Yippee!!!!!!! I return for my 24 week post treatment labs on Sept. 12.

I have had an amazing recovery from treatment. I feel great! I pop out of bed early every morning like I have a spring in me. I'm ready to go, go, go! I'm sleeping better than I have in years.

I wish they would hurry up and get these PI's on the market so that everyone can have access to them.

The next time I post my labs I am planning to post a big SVR. It's almost party time ;-)

Denise

The whole story

Update Sep 20th 2008 Denise is SVR....she cleared the virus and remained clear

six months after treatment.... SHE DID IT !!!!

OMG!! I can't believe I am actually typing this!! WOO HOO!!!!!!!!

I'll post more when my feet hit the ground!!!!!!

Love,

Denise, SVR ;-)

PS: Thank you Vertex!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

READ THE GOOD NEWS

Update Aug 27 08

HI all,

Just want to let you all know that my 4 wk post tx labs still UD. I am in the Schering trial [boceprevir] .

Yippee!!

Terry

Hey Guys,

Just want to let everyone know another ones bit the dust. Post 6 mth trial results UNDETECTED!!!! Wohoo! I signed up for a follow up trial to test VL for the next 2 yrs every 3 mths

I would definitely recommend anyone to get in this trial for those of you out there questioning it.

Thanks again all of you for all of the wonderful support

I will be praying for all of you

Love

Terry

Link To Posts From Terry on Our Message Boards

Schering PI Trial Thread Started in Sept 2007 click here: 37092.1 : Terry Clear at four months post treatment(4 months after finishing treatment) Apr 18th 2008 39539.1 In the Schering PI trial [boceprevir] Udate July 28 I have my 6 mth follow up next week and will let everyone know results 40588.1

TERRY DID IT SHE IS SVR YES ! 40788.1

Mary

SVR 2008 Albuferon Study Combined with Ribavirin

I am a 1a, stage0/grade1-2 and in a 48wk albuferon study combined with ribavirin. At week 36 as of April 17th Starting Treatment? Advise from Mary 39840.11

June 25th 40313.1 The riba has been reduced twice. At wk 24 it was reduced from 1000 to 800 and at wk 41 down to 600 because of anemia. My hemoglobin is 9.9 right now and my study does not allow blood boosters, so if it drops anymore I will be taken off the riba.

Update July 3 40380.1 At 6:58 this morning I took my last shot!!!!!!!!!!!

Thanks to all for your support.

I've been in the Albuferon study and have 2wks left of riba since my shots are 2wks apart. I have had an easy time with the Albuferon at half the shots of standard tx. I think it's slotted to be available 2010.

I'm so happy right now!!! Thank you all!!!!

Mary

Peg-Intron/Ribaviron/Boceprevir

Link to message boards 41322.1

I am participating in Respond 2 Study, P05101: http://clinicaltrials.gov/ct2/show/NCT00708500?term=hepatitis+c+boceprevir&rank=3

I received a call from Linda, my study nurse today, and she stated that I am undetectable today! Woohooo! I'm so happy! Tommorrow I will hit 7 weeks of Peg-Intron/Ribaviron/Boceprevir treatment so this is good! I have been struggling to stay positive, so this good news helps. A friend recently sent me some post it notes with a funny little cartoon stating "Last week I was standing on the edge of disaster. This week I took a big step forward". Think she noticed I've been "off" lately?

Good news that it is going well, yet I am feeling so tired, I have a headache most of the time and have some degree of nausea at most times. 100% of the time there remains the ever present nauseating toxic taste in my mouth that is ever so suggestive that I am not in the placebo group. (Side effect of Boceprevir) My breath could probably melt plastic. So, no doubt, this is not going to be a cake walk for the next 289 days. How will I do this? That is what I find myself asking often. How is it I can emotionally approach what still lies ahead? I find my best moments are when I sort of let it all go and stop focusing on it. Talk about it a little bit and then move on... (like now!) I have to live and just make the best of this year. I do find that I need to vent a little now and then. Can this PLEASE just be one of those moments? Just to lay it all on the line and express it without any filter all of the rediculousness I am thinking and feeling. I can't feel guilty about this need to spit it all out because - indeed - this can really suck and It helps me to move on if I just acknowledge that!

However sucky some of the current symptoms and side effects are now, it feels more exascerbated by the reality of 289 more days of it! 16 pills at 5 nauseating intervals throughout the day... and Friday injections and the ongoing sick feeling. It is incredibly daunting. I had always thought of myself as a positive enthusiastic person able to take on big physical challenges with little complaint. This doesn't feel like me in my normal world at all. This really has messed with my ideas of just who I think I am! I am NOT nearly as strong as I thought emotionally! Crap, I feel rather beaten down and put to the test here! W-WWWWait, HOW DARE I feel self pity when I am so incredibly lucky to be given this opportunity to be well - and FOR FREE?! I should be happy I get to struggle through this physical and emotional torture BECAUSE it means I am being healed! LUCKY me! Drug companies are investing in ME and using ME to advance research and help others. Oh, how lucky and blessed I am! The preceding mantra's are not helping for the moment, though they try regularly to do so. (Positive thinking?!) I deserve to complain on occasion! I even NEED to say that I really HATE feeling sick most of the time! I really must say that I periodically feel frustration about what I feel this TAKES away from me! Then, I move on to do some light gardening or I go for a walk instead of an 8mph run. I stubbornly push forward trying not to give in to this negative energy. That is a feat of its own.

It is tough amidst a full time job, part time college working on that business degree and a series of normal life responsibilities with a 15 year old child. Our new cabin is creating some extra work I probably do not need right now, but I do love the lake place. How the heck can I complain? I have a great supportive husband who is financially successful, I have a great job that I like, we have so many blessings... and here I am, "Boohooo, I feel so sick today." Someone slap me. Oh my gosh, it has occurred to me that I haven't thrown anything at anyone in any fits of anger thus far! That too is a nice achievement! I haven't had any major stressful events to really wrap my current emotions around to really run with. Though I cry at the smallest of things. My husband hasn't yet made any major mistakes for me to exploit. I haven't had any huge things thrown my way that I can really blame all these emotions on. Ha! Life is good and I still CAN do so many things, including a little complaining. :-) Seriously, I stand humbled by the stories I have read and the much bigger challenges faced by others. I have a great deal of respect for those chipping away at life one day at a time through this treatment with big life challenges on top of it and doing so with a great attitude! I come here for YOUR strength to endure this and to read of your successes and to be inspired by you. That's exactly what happens.

It is interesting that when I first read about the additional side effects of the new drug (Boceprevir) that I could experience headaches, nausea and taste changes... AMAZING how one can look at those ailments and say that they are no big deal, mild and small prices to pay for the positive outcome potential... UNTIL you are experiencing the constant headache (tylenol or not) and nausea and taste issues for what seems like infiniti. It is unbelievable how a headache can grate on your soul day after day after day after day. Nausea - okay to cope with for an afternoon or so, but again, day after day after day it is utterly exhausting for your "positive spirit". That positive attitude comes and goes, but man oh man do these combinations of ailments all existing together unhappily in your life reak havoc on what you've thought of yourself. Some days, I find myself laughing hysterically at how unbelievable this whole thing is. Seriously, I find comedy in the 10:00pm doorbell alarm set up on my iphone to remind me of my evening dose... "Ding-Dong", Who's there? Freaking little blue nauseating pills from the pit of hell here to kick some HCV butt. For each of the 5 "Ding-Dong's" per day, is yet another renewed way of thinking about this all and yet a different person answering the door. Some days I welcome them into my home and some days I curse them - but always let them in any ways.

All right, meet me in my day to day life, and you may not detect even a hint of all of the above BUT, I know you know the truth when you read this, I am weak, then strong, I am angry, but also happy and feeling blessed, I am a freaking normal person being put to the test and experiencing a roller coaster of emotions and just HAVE to share this whole human experience that is quite real, quite challenging and shall be the bane of my existence for 289 additional days, but then WATCHOUT, I shall at that point return to being the woman I once knew myself to be! Joy will overwhelm me like when I finished treatment in the past... like when I finished those marathons. Is the joy of life ever more amplified as it is after you've totally been put to the test? Overcoming obstacles and reaching that summit HAS to be one of life's greatest feelings. And I'll have earned it! And to think my obstacles are small, though they are big enough for me! I will be the happiest most annoyingly positive person ever when this is done! Tell me you understand THAT emotion! Just like last time I finished treatment, I KNOW that I will be elated, virus free and the biggest cheer leader rooting for all who go through the same... I tell myself what I'd tell anyone else, just hang in there and don't quit! Keep on keepin' on. If anything defines my experience, it is this crazy dichotomy of emotions.

Just moments until I must choke down 4 more pills as my scheduled dose time has come... (gulp) again. Ugh. This, coming from the girl who can easily swallow a handful of vitamins in one gulp - and with a stomache of steel, or so I previously thought. These pills are positively nauseating... so I brag I've taken them without incident or complaint most days, today is not one of those days. Truly, some days I could hurl... Convince me that I will get stronger day by day! Perhaps you can relate to me, perhaps not, but hopefully we can just all appreciate one another's very personal experience that this is and just help one another as we come here to share it. We aren't alone in this war, which helps. "Ding Dong", Who's on the other side of your door-bell alarms?

39726.1

Geno 1 Treated Twice

I am undetected as of my 6 month blood work!!!!!

I am a 1a which is the hardest for svr and this was my 2nd treatment as many of you already know. I cannot begin to express the joy I feel right now. I can't get this "grin"off my face. I have been truly blessed. And.... you have to know that having you all here for me through all of my "ups and downs" has been a blessing as well. You are my friends but most important you are my "family". You gave me so much love, caring and support. I am truly honored to be a part of this special room.

Now excuse me I have to go and do a happy dance with my dog! lol

Many hugs to you all my dear dear friends,

Denise

Geno 1 "quasi" species

I found out today that my PCR shows I'm still undetectable. My Dr. used the word Cured! I made him repeat that twice. lol. Everyone here has been so supportive that I just want to Thank-you. It seems like a lot of people have been coming in undectectable lately. I hope it is a trend that continues!! I would also like to say that I have heard a lot of people say geno 1b is the hardest to beat.I had geno 1 "quasi" species. Apparently that is a mix of more that one(maybe more) sub-species. I haven't heard anyone else characterized this way, but at least we know even a combo of a&b can be wiped out.

Annabell

Bill first update waiting for 6month pcr

Howdy Friends, Well after 52 weeks the day finally arrived. I did my last shot of Peg-intron friday. Last Riba was sunday. Doc kept me on the Procrit for the next couple of weeks to get the blood back up.

It has been a VERY hard treatment, but with all of the support from all of you, it was doable. I am hoping that it will not take to long before I start feeling human again.

I was 1a with a VL of 2.5 mil. I had a 2 log drop in the first month and was UD the second month of treatment. Had to go on Procrit and happy pills, but it really helped!!

For any of you that are just starting treatment, listen to all of the GREAT people here. It will really help. The Dragon can be beat.

I go back in 6 months for labs. If everything goes right I am hoping to be SVR !!!!

I thank God for all of you !!!! I could not have done this without you. I will still be here on the site, and will always help if I can.

Bill

geno 3

Hi all, well guess what...just received test results after 6 months of treatment (geno 3) and still undetectable!!! (fireworks)

Ast 22, Alt 14,

and all of you were my strength during the treatment. My hair did begin to thin, but is growing back :) Life is good! I was one of the lucky ones; the side effects could have been a lot worse. I teach and did not miss one day in my classroom.

God bless you all! Marianne

Genotype 1a.

Hello all. Just wanted to share that I got my 18 months post tx results (did 6 mo post and then 1 yr post that) and I am still undectable! Just to give hope for those fighting this nasty disease and tx. Hang in there! You CAN do it.

Tx was very rough for me. Being a stage 1 Grade one when starting, not sure if I would have treated if I had to do it over again. But, then again, the earlier in the disease you treat the better your chances of kicking butt.

It was somewhat of a tradeoff though I am on Anti depressants, when I try to get off I suffer from anxiety and depression like I never had before. I am on Thyroid meds from now on. My stamina and mental clarity are not the same as pre tx.

BUT, I don't have to worry about that nasty virus eating my liver any longer. What a relief!

God Bless you all.

Scat

geno type 1A

Some of you may have read some of my posts in the past. I had geno type 1A stage 3.5 grade 4. Start tx with a VL 0f 7,400,000 IU/ML. I enrolled in the Schering Plough Protease Inhibitor clinical trial and got into control arm 2. This arm was a 6 months tx using scherings sch503034 Protease Inhibitor, Pegintron, and Riba. I cleared after 2 weeks on tx and was clear until completion. Now 6 months post tx I'm still clear and SVR!!!!!!!

I'm a dancing fool.

Just had to let everyone know!

God bless everyone.

Doug

Infergen 22159.48

To anyone who is following infergen tx's and others who are in it now...
Get, Cbert and others
I just got my call this morning from the nurse (Martha) on 12th wk. pcr results.
4,416 vl 12th wk 136,452 vl 4th wk. 3,148,230 vl starting

11.1 hemoglobin came up alittle
3.6 RBC
1.86 WBC
1.10 Neutrophils
57 ALT*
50 AST*

Dr. Reindollar since the 7th wk. or so has felt that my immune system has been fighting along with the infergen tx. He says that was reflected with WBC and neutrophils going up. I just listen, a few more weeks and the Liver panel is going up. He said this is not unusual. Thats the input I have had on the liver enzymes**. They have been going up slightly since week 7.

I'll be honest I was hoping to hear a lower viral load but it is what it is. I am thankful to be where I am but hoped to be lower. My ribarvin was reduced since the 7th wk. I am at 600 mg. started at 1000mg. and I feel this is affecting the viral load getting clear.

The sides are still about the same, I have weakness, mainly tiredness and just rest to get thru it. I try to do things when I am able. I am amazed at the gentlemen who are working and mainting their careers while in this tx. My hat is off to you.

Hope Get and Cbert are doing well....Anyone else out there who is starting or looking at this tx let us know how you are doing...

Peace and may we all get the results to succeed in this tx!!!!
HepCfree
Jane

Pulled Off Treatment

Haven't been in touch for a few weeks...made it to wk 29. At wk 24 viral load had dropped to <615 and my blood crashed.
My Dr. with me being in the trial had to pull the meds for a week.
WBC, neutrophils, Hemoglobin everything was at crictical ranges. My Dr.tried to get modified dosing going but after 4days. The pharmacy Drs. felt I was to unstable and in critical ranges.
I was off meds for 1 week and came out of the trial, and my Dr. took the case in under him for a private treatment.
They ran (Intermune Pharm.co.) all the labs again cause I was coming out of their trial. My Dr. told me on our last appt. The pcr/ viral load had to be close to the 615.
I think you know the next part, pcr came back at 39,000 copies. It was over. It was laying low but not going into remission.
We would have not tested for another 12 wks. out...its better that this revealed itself now.

I don't post much, but those times you guys gave great info and help. Got my 6 month post TX result back Friday and PCR QL RNA = "Negative" !!!!

For Thanksgiving here in U.S., this is the greatest news - and blessing. For all you others struggling to continue - KEEP THE STRENGTH - I was so close to stopping TX but family, friends and forums like this one REALLY did make me push on.

Some side effects still a bummer, but liver is showing significant signs of recovering. Will never be "healthy", but PegIntron,Riba just may have added years to my life.

Thanks again for the support. I am cheering you others on every day.

God bless!

2007--

Six months post tx my test came back CLEAR!!

I'm still dealing with "re-entry." I think my values have shifted: I really want to do the things I love to do.

I keep having flashbacks about last year when I was on tx (riba & peg). I hope I never have to do that again!! Those of you on tx now have my warmest wishes for healing.

Thanks for all your support, folks.

Warmly,
Tavy

UDATED 2008

Hi Everyone

I got the good news -- I've been clear for a year now. I finished treatment one year ago.

I feel better than I have for about thirty years.

I remember how I felt during tx -- the main thing is to just keep on. I mostly didn't have the energy to go to my computer, but when I did I always found comfort at this site.

Thank you all.

Love, Tavy

SVR May 08 Geno 1

Dan

After 48 weeks of tx at maximum dosage for both INF and ribavirin, and after 6 months of starting to feel better than I have in more years than I can remember, I am very grateful to announce the following results;

HCV RNA = UD

ALT = 20

AST = 24

WBC\RBC\HGB and platelets all within normal range

This dragon came to be inside me in 1971 and as of 11 May 2008 this dragon is dead

Dear Friends,

Today, one year and six days (but who's counting.....................LOL..........) after my last riba pills, I got my latest labs: NO HCV DETECTED!!!!!

And, my ALT/AST are both in the teens, where they have been since about week 6.

This place remains home for me, and I will always come back (okay, I haven't even really left yet!). Now, if only I could figure out why it worked for me, and then share that with everyone..............!!!

Hugs to all,

Kristin (Class of 2006...................LOL)

(((((((((((Family)))))))))))))

I just got the greatest news- I am still UD!!!! I am so thrilled.

Some of you may not be aware but I am a 1 a and only was able to do 20 weeks of the 48.

I want to thank everyone for their love, and support.

Love,

Barbara

2007

SVR - Infergen

Oct 31 07

I can't believe it myself. I'm SVR six months of Peg and a year and a half of daily Infergen later. I wasn't given the best odds and really didn't expect this news. I even dragged my feet going for the six month pcr. I figured, What's the point? My mind had just been set on taking good care of myself until the new meds came out. I went for the pcr last week anyway, one year after finishing tx.

Last night driving home in the dark and rain my cell phone beeped I had a message. I fished for it fully expecting a message from my husband or my mother. It was my doctor. Lonestar is SVR. It still hasn't sunk in. I just didn't expect this news and don't understand how I could be this lucky. I only wish with all my heart I could do some of this for all of you who are still struggling.

My best,

Rebecca

Oct 07

Hi EVERYONE! HAPPY BEAUTIFUL END OF SUMMER!!

Just got my test results and Its Official: 5 Years Clear!! And the Hospital got new in-house test equipment: < 5 iu/ml !

Next Stop: EVERYONE Clearing!! We're getting closer!!! YEA!!

With HOPE for ALL,

Marcus

Jeremy

Ok, so I've been a bad boy and not posted in some time, but I just thought I would pass some information on.

For those of you who don't know, I did 48 weeks of tx for geno 2 and finnished in February.

6 month labs are Undetectable!

So, for those of you on TX, thinking about it, etc....here is another happy ending!!

I don't know if anyone remembers me. I used to be very active on this site and then stopped. Partially because my computer is upstairs in my house, and my horrific pain in legs and knees prohibits me from those steps. I cleared virus in September 2005. 72 wks of Pegintron and riba, not to mention all the procrit. Was second time treated. I still have a-symptomatic mild cirrhosis with no upper varices. However, my once painful arthritic knees are now so painful, as is other joints I just want to cry. I believe my arthritic condition was escalated because of treatment. I live in constant pain. Can't take any pain killers with codine (codine makes me sick) and actually nothing helps. Will be seeing Orthopedic surgeon in September - I'm ready for whatever I have to do. Anyway I'm real sad tonight because I feel like a cripple and my husband misses all the walks we used to take and the adventures hiking we used to have. His words really made me want to cry. A lot.

Miss lots of you. Don't give up the fight. Treatment worked for me as it did for so many others. Just don't give up, ever......God loves us all.

Betty Aug 07

Hello everyone! I'm at a friends home in Alabama using his pc. I'm staying with my other son, Josh for a while. I got my lab results back, and my dragon has come alive again. I'm no longer clear. I don't have my #s yet and I didn't think to ask what they were, but they are sending me copies. I can't tell you how bumbed I am over this. What's next??? My dr won't even consider the tx I was on (peg/copeg), coz of the trouble I had b4, and just now this month my blood counts are normal again. His nurse said that he said check in with him yearly to see what's going on. I'm a bit bewildered by that. He said I should wait for some better tx to come out. Sit and wait....I don't know. Should I go to another dr, or wait or what? I know I have time to wait for something better, but I still feel like I've been dumped, for lack of a better word. I just don't know what to do at this point. Before first tx, my bx in oct 05 I was grade 2 stage 2 fibrosis. Will that go on till I have chirrosis, or what? I'm just a little confused right now. As always I'd like any advice, support, anything that may help the way I'm feeling right now. I hope all of you are doing as well as can be expected. I miss you all. Many hugs, Dex

Mar 07

I had my 5 year check with ultrasound and blood work. I am still virus free. Dr. Pockros used the word cured. I still have cirrhosis and that is the reason I have the ultrasound to look for tumors but none to date, as a matter of fact when you compare the current ultrasound against previous ones, he believes the liver is improving as the shading is not as dark , and it seems to be progressive as we have 2 of these a year going back 5 years. But ultimately the only way to know if the liver has improved is another biopsy. I will wait a while for that. All of my blood work is normal and my liver continues to function as it should, before treatment I had alt and ast of 450 and 900 normal I believe is about 60.

I had quit drinking years before I knew about the virus, so now that the virus is not active and I don't drink I have nothing attacking my liver

Dr. Pockros said we will no longer do the blood work to test for the virus, so I am one happy guy.

When I first started treatment, Peg Intron and Ribaviran, I dont think there was much faith that I would clear, I had genotype 1a, a high viral load, cirrhosis, and overweight. I was not clear at the 1st test but had experienced a huge drop in viral load. By week 24 I was clear and have stayed that way ever since. I did not have a lot of the bad sides that some have experienced I did get anxiety real bad about week 16 and Paxil became my happy pill that helped me though the balance of tx. I quit taking it right after tx ended. I had to take Norco for aches and pains and I was real tired all the time. i made it to work almost everyday, but as soon as work was over I was home asleep in bed or on the couch.

I live in Southern California and I believe that the weather was beneficial during my treatment I did not have to deal with the temperature extremes of winter or summer and it is always nice just to be able to go down to the beach with a lawn lounger and just take a nap listening to the eaves come in.

So , those currently on tx don't give up there is hope. I am walking proof, that even folks who don't meet the criteria for being sucessful on tx can and do clear the virus

Chanman

Apr 07

This folder is about what happens when you stop TX how long exactly do you get you back one day at a time.

(click here to check out this folder on our message boards--- 33572.1)

I took my last shot last weekend on a Saturday nite. I just took the last of those pills tonight.

So as I drag old wrinkled up butt and my two hairs that I still have on my head lip blisters and tongue blisters off the battlefield. I can rejoice because I have won the battle!!!

There was one who walked away and it was me the dragon lays dead and defeated!!!

I know there will be others battles in this life to fight this one just made me stronger and ready for anything else that wants to knock on my door.

I do not want to take all the credit my faithful troops (all of you) prayed for me encouraged me and made me laugh when I wanted to cry. I would like to say thank you so much and I will continue to do the same for you.

So on with the diary last of pills feeling quite drained but excited all at the same time. Tomorrow will be the first day without tx and my husband is still alive I didn't kill him so see killed the dragon and left the husband standing who says miracles don't happen lol. Until tomorrow God bless Lesa

July 07

I am in week 6 of the Vertex Prove 3 trial. This is a big week as Vertex releases whether you have had a response or not with your 4 week labs. You have to have at least a 2 log drop to continue in the trial. I MADE IT!!!!!!!!!!!!!

This is the first time I've dropped that far...and in only 4 weeks!!!!

I'm walking on air right now! This sure makes the anemia and nausea all worth it!

Also, remember, I have struggled with anemia so I was only on full dose Riba for 2 of those weeks. The third week I was dose reduced to 600mg and the fourth week they discontinued my Riba completely.

I can't believe it!!!!!!!

Denise

My nurse informed me today that she was incorrect that the trial protocol called for a 2 log drop at your 4 week labs. Actually, you have to have a 1 log drop at 4 weeks and 2 logs by 12 weeks.

So much for all my 2 log drop hoopla :-(

Oh well, at least I know it's heading in the right direction...and of course, there's still a chance I have had a 2 log drop. Just won't know for a while.

So, to say I'm not disappointed would be a lie.

Darnit!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Denise

To my friends,

I just got back from my gastro and the virus is back! VL 467,000 with slightly elevated liver enzymes. This was my 6 month post tx test. I must say that I am very disappointed although not completely surprised. I (as was my gastro) was very hopeful that I could remain clear - especially since they will not give me clearance at this point to retreat. My gastro is such a caring man and was very disappointed. He said that he had been hoping that he could use me as his "miracle" case.

I suspect that some of the signs I felt a month ago were probably the virus resurging but will never know for sure. I actually am more disturbed at this point at the liver enzyme levels than the vl. ALT is 112 and AST is 67. They were only slightly elevated prior to tx.

For those that were not on the board when I was doing tx - I am a 1b, starting vl of 9 mil, infected for 25 years plus. Did 21 weeks (out of 48) of tx - full dose - and was pulled due to severe sx's. Was clear post tx 1 month, 3 months. Last pcr on March 1 was clear.

I know that I shouldn't have expected to remain clear since I could not finish tx and actually have felt somewhat "guilty" knowing that others that finished tx have relapsed when I was still clear. My main concern now is a game plan for the future. Doesn't look like anything will be out soon that does not include INF.

I just want to tell everyone that I am so blessed for all the support that everyone here provides. It is definitely my refuge as it is for so many others.

June 07

Hugs, Shelley

Hi all. I have not posted here since I got my 6 month results in which I was clear. I just wanted to share the good news that I am still clear after a year. I can't say how good it feels to finally believe that this thing is not coming back. I know that probably sounds a little premature of me but I just feel like it's true. I cleared the virus after being one tx for only 2 weeks and I stayed on the tx for the full 6 months and I really think we got all those buggers. I feel blessed and I hope that very soon they discover something that will kill this disease for EVERYBODY!!! God bless all of you, Patty

pbagley

Hi.

I've posted here only a couple of times since I was diagnosed with genotype 2 a year ago, but have lurked a lot and learned a lot.

I got my SVR results today--six months after ending treatment--and I am undetectable.

I post this just in the way of encouragement Treatment was a bit rough, but doable. I never missed a day of work, though I confess my job is easy to begin with. Don't hesitate to nag your doc for anti-nausea meds, itch creme, sleeping pills, or anti-depressants. You can get through it without all that, but there's no reason to.

Good luck to everyone

Cotton

called liver clinic today to check on recent blood work.the report said NO HCV DETECTED.what a relief i have been putting it off over a year. a little history,found out i had hep c in routine test oct 2004.had bx feb 2005 geno 3a fibrosis stage 3 grade 3 started treatment may 2005 till oct 2005 was clear after 6 month check and now still clear yahoooo.i am a commercial fisherman and did treatment while at sea and worked thru it all just about killed me i was crawling around i was so weak.i started feeling better day one after tx , and real good 3 months post.lost wieght and hair was pretty follically challenged anyway, gained wieght back but still working on gaing strength iam too lazy to do wieghts. thanks to all here who post good imfo to read and to those ive chatted with good luck to all who are dealing with this disease in thier own ways ty dale ps i am now over the hill, 60

dliver

Well I’m 1 year post TX and…still undetectable. What a relief, huge sigh.

My HX is as follows:

Initial VL was over 3 million type 1a, mild portal fibrosis, and 2 biopsies. I was initially diagnoses in the 90s when all they had was daily interferon injections and a 20-30% cure rate. I opted not to begin treatment at that time. Probably contracted HCV in the early to mid 70s.

Had numerous sides, rashes, depression, mouth sores, lethargy, night sweats actually needed 2 pillows a night because I’d soak one, aches and pains. Went on anti Ds after I started crying at my desk at work about 2 weeks into TX. I’ve stayed on them, once on them I realized that I’d probably been carrying depression around forever, and my wife notices I’m not cranky. Was able to work throughout TX though my supervisor knew I was on and I informed 2 trusted coworkers so they could monitor my behavior. Treatment lasted 48 weeks, towards the end I could hardly walk a block, and was missing a day of work a week.

Now I’m back to running and exercising and feel great so for me the ordeal, I mean adventure, was worth it.

J&F is a godsend what great folks. Thank you

Roy

Hello everybody,

My 3 yrs post treatment results are My HCV still remains Undetectable and my Liver levels are alt 14 and ast 16 Normal. I did Pegasys-Copegus for 24 weeks and genotype 2b with stage 1. I have been working alot lately and keeping myself busy.

~*~Gigi~*~

Hi everyone!

I hope this post finds everyone feeling well. Just got back from the gastro for my 24 week checkup. At 12 weeks, I was HCV RNA negative with VL <10. UD!! Normal liver enzymes too! Great!! I had it checked again at week 24 -HCV RNA positive, but VL still <10 with unchanged normal liver enzymes. So I'm like, what the heck does that mean? ( Well thats not exactly what I said!! LOL!) I was pretty down and confused. My gastro said he wasn't overly concerned as my VL is still lower than what can be counted and that I should contine on. If my VL had jumped, then he would have recommended that I stop tx. He explained that the quanitative test is pretty sensitive and that at very low VL, its not always super accurate and /or it could be just "one of those things" that we really don't know why. He mentioned that he has had several other patients with similar results like me who went on to SVR. So....I am cautiously optimistic. The sides continue to be moderately miserable. I finally got over most of the riba rash, or at least its tolerable now and I don't feel the urge to use any garden implements or power tools for scratching. My biggest gripe, and I suspect a very common one, is the fatigue. I did not know it was physiologically possible to be this tired all the time!! As many of you know, I am a nurse and I work in Interventional Radiology which requires me to wear a lead apron all day. This is causing me to be hot, exhausted, sweaty, and because of the rash in my armpits ( oh rapture!) I can't use any deodorant, I smell bad too. I'm pretty much just waiting for the locusts or whatever the next plague is!! Anyways....Thanks for letting me vent a little, I'm still hanging on and at least I'm halfway home.

Mike

Aug 07

Just read my blood test results. still clear after 2 yrs. Im thrilled!!!! One problem though, every and I mean every, bone in my body aches.......dont know if it has to do with treatment or not but I'm going to check it out. Ill let you know what it is when I find out myself. Meanwhile anybody else out there achy post tx?

So all you 1A's with cirrhosis, don't give up hope. All 120 shots were worth it :)

Linda

I was diagnosed with geno 1b, stage 4 cirrhosis. I pursued tx with pegasys/ribivarin combination therapy and was undetected by week 12. Consumed 56 injections of pegasys and 44 injections of procrit for anemia, with excellent results. Developed cancer half way through tx which was evicted through a surgical procedure and no discontinuation of hep c therapy. Yes, there were days I wanted to jump out the window and yes, there were days I wanted to say to hell with this. Yes there were days of hatred and pain, self pity and rage. There were also the days spent here with my friends, true friends who saw me through tx, days I laughed and days I had tears of joy. All these days intermingled into one.......one story of success out of many......I am SVR

Never give up hope, it can be done, you too can have a success story:-)

Step

I FEEL BETTER THAN I DID BEFORE TX.
I FEEL BETTER THAN I HAVE IN YEARS!

So many times I dreamed of being able to say those things. I thank God I can say them now.

Stage 4, early cirrhosis, genotype 1a. Treated with the dreaded Rebetron (made strong men cry and weak men die) combo. Relapsed.
Retreated with Pegasys/Copegus and got SVR.

It was HARD!! Really hard, for me, for my husband, and for my children. But 192 shots of interferon and who knows how many little poison riba pills later, my 30 year battle with HepC is over. And I won. It's been a year since I finished tx, and I can finally say, I have no lingering side effects. (Yes, it took a whole year).

I'm back to cooking dinner for the fam, chauffeuring the kids around town, caring for my animals, working out at the gym, and training my horse.

Many many thanks and prayers for those who enCOURAGEd me along the way. I couldn't have done it without you. My hope is that those who are facing a situation similar to mine will read this and find enCOURAGEment.

Fear not,

Barb

CLASSICGLIDE

Hi friends,,just found out 6 months post tx is still undetectable,thx for all the great support and info.can you think of anything i shouldnt be doing or doing now like diet for example? thx again keep up the fight!

Joe and Dixie

Hi hope everyone is hanging in there havent been here in a while but thought I need to share with all that I was 2b viral40000 grade 4 stage 2 fibrosis with peicemeal I wnet on riberviean and interfreon for 6mo. wasnt to bad nothing happened during treatment that was a major deal tired , lost little weight muscles shrunk sleepless nights and eating was rough never got real sick just shakes and cold at times worked half days because I was able to so that was good a year later Im full responder . Feel better than I have now for a while . It was worth the taking of the medicine what Im saying for me anyway Im 48 yrs and quit drinking 8yrs ago not even knowing I had virus VA found out by routine blood check VA did me right at least the montgomery Al. hospital anyway hope any other 2bs read this they give it a chance and try treatment like I figured got to give it a chance it was a real weird summer thats all I can say I think Im back to normal now . Good luck to all of you and God Bless later Joe from Dixie

I was a 1B and was diagnosed in 1991.
I did the Rebetron 144 combo treatment. During the first few months of TX my viral load started climbing like crazy and then finally became undetected. That year was what I thought was gonna be the hardest time of my life, little did I know there was more to come. At 3 months post TX my viral load was back up to 3.5 million. There WAS more to come. My Dr. wanted me to wait a full year before I tried retreating. For the next 12 months I spent 3 days a week in the gym trying to put myself back together. I had lost a tremendous amount of weight during TX and was down to 145 lbs. at the end. It took almost 6 months before I was feeling like me again.
I started the next round with Pegasys. For the first 3 months I did double dosage of Pegasys and 1600 mg. of Copegus and then went to standard dosage. I made it through 54 weeks before I fell apart. I was planning on doing 18 months. I had been having blackouts and was really feeling horrible for a week or so before I went to DC 2004. Because I was determined not to let Hep C run my life, I needed to go to DC anyway, and I had to do it on my own. So I drove on down. Spent the day of the march in my hotel room sleeping and just being totally exhausted. I got myself together the next day and went out to the National Mall for our Awareness Day and was doing fine til the end of the afternoon and wound up in the ER for a few hours. I made it back home to NJ the following day. Everything was down hill from there. I was only able to work 4 or 5 hours a day and spent my weekends in bed. I got to week 54 and I just lost it. I just couldn't push myself through it anymore. I was in pain and just plain worn out. Everyday until my first VL test I was in doubt. What if I relapsed? Maybe I could have hung on for just one more month of TX or maybe just one more week. I felt like I failed because I never reached the 18 month goal I set for myself. The day I went for my 3 month post tx pcr I was sure I had relapsed. I was so upset with myself. My Dr. called to tell me I was undetected. I've never been so glad that I was wrong. My 6 month post tx was still undetected. I'll get the results of the 9 month pcr just before we all go to DC this year. I'm pretty sure it's gonna be clear. I'm still not feeling real great yet but I think recovering from the second round of TX is going to be harder. So after 213 injections and bazillions of riba pills I think I have a success story. Even without SVR it was a success for me. I made some wonderful friends along the way and had some great experiences. Somehow the good stuff always outweighed the bad.
I've heard so many success stories with Pegasys. It's pretty exciting that this drug may potentially work for all of us.

Be Well
Glenn

UPDATE From GLENN

Dear Family & Friends,
After 213 interferon injections and truckloads of Ribavirin over 26 months of TX, I've finally won the battle.
I got the results of my one year post tx pcr just a few minutes ago. I've reached SVR! It's been a long hard fight that I wouldn't have survived without the support and encouragement from everyone here at Janis & Friends. My victory is your victory. You've all helped me along the way.
I was genotype 1B which as you probably know is a tough one to treat. I hope my success will give every one of you hope that you can reach SVR also.
I've waited a full year to allow myself to be excited and happy, but now it's time to cut loose and celebrate.
YES! I'VE WON. I'VE BEATEN THIS DAMNED DISEASE!
My joy is tempered with sadness at the horrible disaster that's happening to our fellow citizens on the Gulf Coast. I'll pray that their suffering soon ends.
Be Well and thank you my friends
Glenn

Wow, lots of new faces here. Just thought I would drop in and let you know my 1 year post TX labs were clear. The Gastro said if the virus was still hiding it would have probably returned following December’s cranial surgery so he was willing to say he was 99.9% sure I will stay SVR and he doesn’t need to see me for a year-(Geno 4-C/D)
I’m still a little slow from the surgery and stroke but I’m getting there. No more migraines, cranial fluid loss, meningitis and for the first time in memory I can sleep more than 6 hours at a stretch. 6 hours of sleep, what a novel idea.....The only RX I have now is for exercise. (Geez, you would think in the year 2005 they could bottle exercise-)
Anyway, I hope this note provides some hope to any Geno 4’s out there.
Health and Happiness to all-
secas

OK...... I finally got my test back it has been a month or so ...lab couldn't find it but it is in now ...it has been 1 year and 3 months that I have been off TX ...I did 2 full years of treatment and finally cleared ...they said all my test came back NEG. the virus is gone ....now where is my lollipop ...I went to the dr`s as I was told and now I want my lollipop or I am going to throw a fit .... kick and scream and roll on the floor ...(smirks) ....thank you all for being behind me and helping me make it through all of it ....hugggs to you all and I thank you .....loves and hugggs to you all

Dee

And thanks to this website janis and friends and all the friends I've made. Without u and ur support i would be svr hepc. Just got result today for 6months post tx pcr, clear, tahnk ya'll so much. not going names becuase i might miss one. if u met in dc or talked in janis u touched my life kept hope alive for me. Details, diagnosed hepc,geno 1b, vl 7 million, fibrosis 3 3, and started tx in early august 03, toleraled the meds well but no walk in the park but i was blessed finsihed tx 7-30-04. first pcr was clear and done 24wks, 2nd pcr was post tx still clear, nexxt one was 14wks post tx,and still clear. and 2weeks ahd my 6month post tx pcr, and am still clear. I feel blessed my higher power who led me here to the support I needed, i was ignored by all family but got what I needed fromjanis and frinds For new comers these are real people who have what you have. They have straight answers to ur questions, God Bless all of janis friends. U made differnec for me, Sincerely SLC_2002 aka Philip from Arkansas

I got my test results today. 6 months 3 weeks post tx and SVR. I did it. Offical title ( Dragon Slayer) Thanks to all of you . Without your help I couldn't have made it.There were times that I felt I just couldn't go on any longer and I'd log on and you guys would give me a pep talk and a kick in the butt and I'd get back in the game and go a few more innings. The last three months were the pits but with your alls help I made it . Thanks again to all of you and God Bless. Tommy and Gypsy Jeanie

Hello Everyone,
I haven't been here in quite a while, but wanted to share the good news. I passed my 6 mo post TX pcr.
I was scheduled for 48 weeks but developed heart problems at 44 weeks and had to go in the hospital for 9 days. That was the end of my TX. I had pegged a heart monitor at 250 beats/minute.
If I can be of any help, please ask. Good luck and thanks for the help in the past.

Just wanted to share... hubby's 6mo post pcr results - virus still undetectable and Dr claims SVR!. He was type 4 and treated with peg-intron for 48 (long) weeks. Lately i've been finding that the man i married has more or less returned and life is hopeful again.Tx was hard- on both of us and our family- but SVR is worth it. There are a few issues still with lingering side effects but we feel with God in our hearts we can handle it.

Finally bit the bullet and went in and had my post tx 6 month PCR done. A month late.....I wasn't sure if I wanted to know the outcome of TX. I'm so much happier in the land of Denial....where everything is rosie. Well Hubby wanted to know and kept bugging me till I went in and had it done. Got the results back. I'm still undectable....YIPPEEEEEE. I'm glad he was such a pill. Its a relief to know the outcome. But even more important. It was such fun giving the good news to all those who supported me, laughed with me and sometimes at me, and worried about me. I didn't realize how important closure of some kind was to them too. My having and treating the Hep C turned into kinda a community project at work.....GET MICKEY THRU THE DAY....couldn't have done it without them....or the people at Janis.....Thanks
Humbly......Mickey

I just got my post one year pcr back, and I'm clear. I feeling pretty good today.

Billy Mack

Hi all..... I know it has been awhile & I am sure there are many new comers so a short story about me.... I treated once with Pegintron 120/Riba 800 & stopped ( at 24 weeks) as I did not clear..

2nd round was Pagasys 180 with Riba 1200 I had a 4 log reduction at 12 weeks & cleared next PCR at 24 weeks....I treated 72 weeks.... & stayed positive... I just had my 7 month PCR & I am clear !!... I am 1A male older now ....& I hope my story will help just one person to hang tough as I know it can be done .......

All the best to ((((all ))) .... Sandy

I don't get on with all you wonderful people much anymore but please know that I love each and every one of you.I am six months post Tx and my labs are not detecting the awful disease that we all share.I know that some of you that are reading this have not cleared and some of you have relapsed and my heart aches for you all.I am sharing this news with you because I want you all to know that it is possible to clear and hope that this will give some encouragment to try with Tx. You are part of a family here at Janis and Friends and are amongst the most knowledgable people that I have encountered and also the most loving ,warm group you could ever dream of encountering.And for all you people who have Hepatitis or have loved ones with this awful disease I want you to think positive and clear this terrible disease from your bodies.IT IS POSSIBLE!!!!
I started out at 237lbs and at the end of Tx I had dropped to 190lbs. I was on Scherings Peg Interferon Alpha-2B 0.5ml injection once a week and 600mg Rebetol in the A.M. and 600mg P.M.,I did a 48 week treatment and was clear at two week,12 weeks,and now 24 weeks post treatment.I am keeping a positive attitude for my 48 week post treatment test and for all the tests there after.
Treatment is a very hard thing to go through and I feel for every one of you out there going through it right now,but you are in good hands here at Janis and Friends.
Janis I know you are up there looking down on us all and you are the Angel that made this group possible.I only wish I had wings to come and hug you for creating something so good from something so terrible.
LOVE TO ALL,DON THE BOATGUY

At seven months after finishing treatment, they drew blood on Monday of this week.

The doc just called and said I'm still clear (HCV RNA undetectable).

I'm very grateful to all of you for your support during the past year. I don't think I could have finished the treatment without it.

I hope you all get the results I did today, if you haven't already.

My humblest thanks to you all.

Ray

18733.1

My one year post tx pcr is negative.Just got the word.It can be done.
I am officially svr.I want to thank everyone for being here.I wish all of you the best.

Fritz

hello all have a bukaroo Hug and aRose. I just wanted to share that I got my test results back today and i am still clear 1 yr SVR. I just found out though that my thyroid is still underactive. but im back on meds. and im sureall will be ok. thanks all for your support.

Buck

I was still undetectable at 183 days post tx. I am or was, genotype 2b. It took two attempts at tx to get the svr. My first tx of one year failed. That consisted of the old style combo. My last tx, I did 12 months of pegintron b + riba with an additional 2 months of pegintron a (pegasys) + riba for a total of 14 months on tx. I was much more aggressive on the second tx. Even though I had the "good" genotype, I had other mitigating factors, diabetic, overweight, male,
etc,etc,. I feel better than I have in years. Be of stout heart folks.

Heppo

Just wanted to share my good news with all my dear friends here at Janis'. I got my offical PcR report back from the Mayo. 4 years and 3 months clear!! The Roche drug company will do one more next year, and supposedly they will consider me "cured". This, as it was explained to me is so the insurance companies won't be so reluctant to give people tx (relapsers). Also they hope to prove that doing the tx for longer then 48 weeks is bringing ALOT of SVR's in the harder to treat 1 geno's.
Those just beginning your journey, please be strong and DO IT !!! Love you all, Laura Time fly's when your'e having fun!! LOL Take care.

Laura

LIFE AFTER TREATMENT:

Hi Everybody, it's been awhile since I have been in here. I still am sent the weekly emails from here, just to keep in touch. I'm glad to see a few 'oldies' still here! The reason I am finally coming back is: after 4 yrs since my tx, I still have lasting sides (depression,anxiety, severe CFS, daily nausea), and Fibromyalgia that has the worse effects. Dr. said the Hep-C tx could have triggered it. In case you don't remember, I am an 1B and am a relasper after 52 weeks of tx. I have been going to Pain Management for the pain (oxycodone 40mg in the am, and xanax at bedtime) I still see my Pshyc and he ordered for me to have the "VNS" implanted. Takes awhile to get started but will help with the depression and he has other patients that its helping them better than meds. I'm sick of talking so many meds! You can go to www.vns.com to see what I am talking about. I still see my therapist since 3 yrs now and she helps me alot too. Thank God my husband has great Insurance. I also finally got approved for Social Security benifits and Medicade after being denied 3 times. All this took me 4 years to obtain. BUT I do want to know if any others here that have relapsed are they still too experiencing the same side effects as when on tx? My own Hep-C doctor stated that his wife had breast cancer and she was on Chemo and this was 3 years ago and she too are fighting the same sides, and he told me there is a good possibility that we too may also feel lasting sides from our tx. We are all different with how we tolerated tx, and unfornantly I am with the ones who continue to feel badly daily, due to the Interferon and Riba for 52 weeks, plus being an 1B didn't help either. I'm hoping to meet anyone from the North Houston area that I can be 'buds' with. I have met a friend that lives in Texas City who is also having the lasting sides, we talk alot, but the drive to see each other is a bit much for us. My husband works alot of hours, his mother passed 3 months ago (which to whom I was her caregiver 2 years and wouldnt have it any other way, even on my worse days) My husband and I now have permanant Custody of my 12 yr old grandaughter as of last week. Her mother abused drugs and she no longer felt safe with her and now has been living with us almost 2 years. So you see, I need some Adult friends in the same boat as I.

I wish everyone well and I will continue to sneak a peek in here............

LOUIE007 AKA Maggie May

Aug 07

Well folks it will officially be a year post tx on July 8th 2007 but I dont do another pcr until January 2008... Wow how time flies! Just to refresh your memory ( geno 2b, viral load of 36 million, no liver damage and svr three and six months after tx........ I'm doing well and hope others out there are doing well also...... Bless all that are treating now or are going to treat...... Hope nothing but the best for you all......

Hugs and lots of love.

AnnaSmyles

Well...well...well!!

I just got my 5 year post PCR/RNA results...and I am still undetect!! So guess I can be called cured! But...does that take away my NORMAL status??

I now there are many of my friends who did not respond to any treatment and I am one of the very fortunate ones that responded to the old Combo (and it couldn't happen to a nicer gal either :) ) but hopefully my news will inspire that who havn't tried treatment yet to give it at least one try. My geno was 1a and I had the virus for 22 years when I began treatment. There is hope...if you havn't tried treatment... go for it!!

Mary

Thank you all! I don't think I would have cleared without this site. This is good news for a 1b. Peg/riba--48 wks. I just had my 6 mos test. Am 56 yrs old and had hep since 1970. The tx changed my whole life. Last year while on tx was probably the most stressed out part of my life ever. Marriage had problems that peaked. My 18 yr old son ended up in the mental hospital with his own problems. Bi polar/severe depression. We both ended up on anti depressants, both suffered in the bad marriage.. When it rained, it poured. I sold our house (total loss for me), rented an apt and filed for divorce.(son is living with me now doing really well) I sought out help. I HAD to make changes in my life. For me, I believe that my virus flared up because I was so stressed out, depressed, and in an abusive relationship for so long. It ate away at me until it showed up on my lab tests. I am being "forced" to change my way of living and thinking, to a more positive life. Am afraid if I dont' I will open the door to dis ease again. I have been able to see a symbol of the hepc virus in my minds eye. At first, at the beginning of treatment, I saw it as a dark green alien, and as the tx progressed, the green was emptied out.. then the alien crumbled like a piece of bent paper on the ground. I see the alien now, as a very pale color of green. I feel it is below the detectable level. I feel that with diet and my emotional and mental attitude I can keep it there. So.... talk about Silver linning.... I feel very fortunate... as the rest of my life, I will appreciate life and have compassion for others with diseases. I am still having a hard time recovering from the tx, but have accepted that I might be this way from here on out. Brain loss for the most part. But nothing to complain about. CHANGES. I don't know what I would have done without this web site. My nurse was great, but she could not answer much. thanks! koko

I went to my Gastro for my 6 month viral load, after the tx and I'm still undectable. Thank you everyone to help me get to this point in my life. It was a long 12 months waiting to see how everything will turn out. I have one suggestion for the makers of the tx, have your Doc run a autoimune panel on you to see if anything is lurking around in you that the meds might activate. I'm still on cloud nine though.
Hope to see you all in DC, we arrive the afternoon on the 9th through the 13th.
Debbie in Florida

GO GENO 4's!I got the results of my re-test (qualitative had come back "detected" after 47 weeks of treatment). When I went back in, he took a hepatic panel and a quantitative. ALL LIVER FUNCTIONS NORMAL AND HCV RNA UNDECTECTED!!!!! What a roller coaster ride this is becoming! I am definitely choosing to believe the retest, especially with some of the information some dear, wonderful people have sent to me. Opinion - should I go back for a qualitative retest, or just forget it and carry on dancing on air? I love all you guys so much, and thank you for your prayers, compassion, support and even a few shoulders over the last week after getting my first results. Can't spend too much time on site from work or the computer police will come get me :), but I'll be on tonight. HUGS!!!! Jean

To all our friends we love so dearly, we wanted to let you all know that Buck is clear 6 months after the tx! We are so happy, thank you all for being with us through all this time. We are so glad we were directed to this support group (family). God bless you all, and our prayers are with everyone! Also, Buck went to the urologist for a 1 year check up since he had his kidney out last year, and was declared free of problems with the other kidney too! God is so good!
Love to all.

Hello to everyone,

Guys i am back with my 6 months treatment report PCR is Negative but ALT is little high 61.

My Doctor advised me to go for 3 months more. What you guys think should i happy with this or not because my GENOTYPE 3 and before starting treatment my viral load is 5200 iu/ml.

I am taking interferon (Uniferon) + Ribazole 400mg twice a day.

Farrukh Shabbir

Hello Friends;

RNA, PCR Still Neg. Over 1 year

After last talking to everyone of clearing of HepC last Dec.03 I've gone back to my job in Alaska. Like I've said and again to them that know me, God has blessed me in so many ways. Liver transplant in June 98' Started tx January 03, Neg of hepC 10th week. and still clear today.
I'm very thankful to you all that listened to my concerns
The one's that Prayed for me and hoped for the best. Thank you somuch.
My prayers Hopefully will reachout and touch you through
our God.
Just wanted to share my blessings and good news with you.
Happy Easter Celebrations

14578.1

1 year post PCR and still Clear Yepeeeee!!! I think I have this dragon beat for good! Doing happy dance now!!!

Geno type 3a I have had hep c for 24yrs!

Debbie

Hello all, just got my 6 month post treatment results. All clear!! I am one happy dude. Wish the same results for you all. I was 3a - did a nasty 6 months on pegasys copegasys - finished July 25th 3003, was undetectable at 12 weeks. Lost 28#'s on tx and now have it all back and I needed it. 6' 190# now healthy and happy. It was all worth it for me..

Thanks for the support - I needed it and you gave it willingly.

Best wishes,

Steven.........(-:

Just want to let you all know that doc called me this morning and my 6 mo post-tx PCR was clear - non-detected!!! Thank you all for the support and helping me get through. Great big hugs to all.
ed

I wanted to share with y'all that my 6 month post treatment pcr came back negative which, I guess, makes me a SVR. I wish each and every one of you, on treatment or not, the same results!!!

Hugs & Love,
Pat

Dearest family,
I wanted to share my news with all of you to let you know there is hope. This morning I picked up my 3 month post tx Quanitative results...
I am now one year clear of this dreaded dragon.
When I started August 2002 I had a vl of 2.4 million. Geno 1a.
So there is hope.
Praise God and thank you to all of you that helped me throughthis. I will always have you in my heart.
Love Terri

I am a 47 year old male. About 2 years ago I found out I had hep c, geno 1. My wife tested positive but geno 2. We both went through tx, peg interferon and rebetol. Six mos after my wife finished tx, she only had to do six mos of tx, the virus was undetectable. I just got my results back today. After six mos mine is undetectable too!!! I give all the glory to the Lord Jesus. It was so dark when I was going through tx, I wondered if I would ever get my mind back, it was awful! But almost immediately after I finished tx my mind cleared, and I have put on about 25 lbs. It was worth every minute. Praise the Lord!!!

Dennis

I was never tested for genotype but the virus level was at 5 mil. Did the old "combo mombo" and was undetic by the 12th week. It's now been 3 years since tx and I am still undetic.

Blues

finished 48 weeks of Tx. January 24th. 1a, early cirrhosis. My start of tx alt was 950 ast 450 and 2.7 million little buggers in my blood. Started Paxil at week 16 to help relieve some anxiety I was experiencing. PCR was 200 down from 2.7 mil at baseline at 12 weeks, non detectable at 24, 36 and 48 weeks and now my results for the 3 month post tx report came back negative. My end of tx ast was 50 and my alt was 109 that is about where it stayed all during tx. The 3 month post tx bloodwork showed my Alt at 60 and my ast at 23. So it looks as though things are looking up.

David

Hi Hepper Family

Have ya heard the news> Deb (that's me) is still clear after 6 months. I cleared at 8 weeks into tx and did 6 months PegIntron / Rebetol. I'm still clear at 6 months post tx. Doc says repeat PCR in 3 months then yearly thereafter. Will see him again in ONE YEAR. All other labs are absolutely perfect. For those of you that "Suffered through my tx with me" THANK YOU THANK YOU and God Bless You. You accomplished a difficult task. For those new to the forum, I had a difficult time on tx but saw it through abd can sing Am Clear Am Clear Praise God I'm CLEAT At Last. Doc said I can return to work. Applied for a job at West Communications and passed all 7 of their horrid tests. Have interview tomorrow at 11 AM CST. Keep me in your thoughts and prayers please.

I do want to thank everyone hear for putting up with me. I'm sure often times you just wanted to choke me. Thank you for containing your impulses. You're the bestest heppers in the whole wide world. Now its time to give back a bit of what I received. I know my contributions will only be a lil of what I recived cause you folks have given me SO MUCH. I love you, my hepper family.

HUGZ

Deb

Click on this folder to read how our members are doing on treatment. You can read them under guest no need to join the site.

SHARING WITH FRIENDS

Or join our Message boards where you ask us questions and find support:

Chat Room & Message Boards

Joel's Story

Dear Family:

I have been sitting and reading your posts and replies for the past hour or so and, admittedly, it takes me back to the days of Prodigy when there were only about 15 of us with HCV who were sharing our innermost thoughts,fears and compassion with one another.

In late 1990, the most promising- and only truly available tx for HCV-was Intron A. Ribavirin was still an investigational drug being tested for efficacy in tx of HCV. In fact, several of my friends were involved in the NIH trials in Washington,DC back then.

In 1991, when the first HCV RNA PCR Viral Load test came out from Quest Diagnostics, it surely confirmed that I was up there in viral activity. Well, my biopsy showed bridging fibrosis (but no
cirrhosis). Went on Intron A for 10 1/2 months (5 months at 3 mil IU three times a day and, then, 5 1/2 months at 5 mil IU. I was only a "moderate" responder. My LFTs didn't really return to normal reference ranges. RNA viral load didn't respond either.

My point is this, people. As time progressed, so did the histology of my HCV (genotype 1a). Eventually, the new millenium came upon us, and so did new tx regimens. I opted to wait and see what this "new" Rebetron offering was all about- and then Infergen. However, my emotional stability did not afford me the option of starting either at that time. I knew that I had to be prepared with a positive attitude to beat this dragon of a disease.

In May,2002, I started to get "dead-drops" where one just drops and blacks out due to toxicity. All of these years, I kept close watch on my HCV with my Hepatologists. Phlebotomies for iron overloads (ferritin),yearly MRIs to r/o hepatocellular carcinomas,abdominal ultrasounds to r/o portal vein hypertension- Every conceivable blood lab that was then available to us was done at my request on a regular basis.

The ultimate outcome was that I did develop end-stage liver disease with hepatocellular carcinomas (localized)and Stage 4 cirrhosis.

On October 20 and 21, 2002, I received TWO Liver Transplants in a 24 hour period! The first Donor Liver was a "primary non-functioning Liver" and was HBV positive. However, I opted to accept it since I survived the acute stage of Hep B in the 60s- and developed specialized HBV antibodies that prevented me from ever contracting HBV again. I am also HAV resistant due to the current innoculation therapy available (for about 7 years now) that I requested since Hep A can complicate Hep C.

When the first Donor Liver failed, I was placed on life support and given 24 hours to live if I did not receive another donor organ in time. By God's Grace, the second Donor Liver came in from Georgia for another pre-OLT in the NY Mount Sinai Medical Center where I was. The organ was not compatible for her- and just right for me. I didn't know the difference since I was being kept in a drug-induced coma.

Well, 9 days later, I was discharged from the hospital with a new Life to start to look forward to. Mind you, the journey has been sometimes burdensome- and frightening.

Another surgery in June,2003 and a number of in-hospital visits later-and I am still here.

12 months after my successful Liver Transplant, I was advised to consider initiating Pegasys/Copegus tx because the HCV had now mildly infected my new Liver.This was going to come sooner or later- so I was not shocked. However, I was certainly dismayed- and still ALIVE!!!! Although there was no emergency rush to enter into tx, I started to prep my attitude and shared my heart out with those in my wonderful Support Group- my Transplant Team,other HCV people,Liver Transplant Recipients and All of the people in my network who help me to deal with A Day at A Time living.

I immediately opted to start Pegasys/Copegus treatment. I am in a protocol group of Liver Transplant recipients who are doing the same too.

Pegasys #8 injection is tomorrow (Friday). Yet, I have been "undetectable" since week# 4. My Support Team is thrilled for me-
and so is everyone else. However, my key to dealing successfully with this treatment is to remain "cautiously optimistic." I know well that true SVR cannot be confirmed until it is still there at the post-tx 6 month HCV RNA PCR viral load test.

I am just so Hopeful and Grateful for the daily living that I have been Blessed with today. I do believe that the Pegasys/Copegus tx will- at the least- slow down this dragon. On the other hand, I also have the positive attitude that there is a chance to slay this dragon since I am an early viral responder.

We have to do this together, people. Don't leave yourselves alone in your own heads- or the HCV will make your thoughts run riot!

Today, I am a self-advocate and pro-activist against HCV and pro-Liver Organ Transplant (of course)! I actively engage in the Liver Transplant Forum (Patty can fill you in on that), and I am on first name basis with my medical Team. I want them all to be eye-level with me- Yet, I respect my Team as professionals- and they respect me as a patient who yearns to advocate his own recovery.

Ask your doctors and nurses all the questions that you care too. Start a file to keep a history of your labs and diagnostic tests. Any fine and qualified Hepatologist will admit without hesitation that he/she learns as much from their patients as the patients learn from them.

This guy here will be looking forward to chiming in from time to time. I need you just as badly as we all need one another.

Keep up the good work, Patty. This site is growing and maturing with each new time that I look at it. For those of you who are just getting initiated into the journey of conquering HCV, please be assured that the meds offered today make the ones that we had available a decade ago look like "archaic leeches". However, it had to start somewhere. Finally, Hep C is beginning to get the universal attention that it requires. It took 400 million people worldwide who are HCV positive for this to take place.

We are in a good decade to become HCV free. We shall be the winners. For those of us who have to re-initiate tx, do it!! The side-effects that we get don't nearly outweigh the prospective benefits.

I received a call while I was writing this from a dear friend of mine
who also started the Pegasys/Copegus about 3 weeks before me. We both gave one another the strength to take the leap. Although she is having a bit of a rough time with the side-effects, she is now going to call her Hepatologist to find out where her last lab results are from two weeks ago. Get the point? One good hand supports the other.

I am certainly going to be here for all of you. Please be there for me!

My love- Joel (A Very Grateful Liver Transplant Recipient with HCV)

Pat v

Hello all, been awhile since I posted, as a matter of fact, almost 6 months since I posted clear after treatment. I just received my 6 months PCR, and it is back at 78,000. What a kick in the groin. When the Dr.'s office called, they said the Doc wanted to see me right away to talk of options. My first option, I stated, is to get another opinion! Had them send me the lab work, and I will be seeing another GI doc on the 21st of February. I have not posted here much, but when I have, I found this to be a very caring community of people! I am a geno 1a, started treatment w/449,000 vl, and did the entire 11 months of pegasys and riba. Never once did I reduce a dose or miss a shot, and worked thru the entire time. When I got the all clear after treament, I was on top of the world. I knew the 80/80/80 rule had worked for me, and I am not about to give up now. I won't be going thru same treatment again, maybe will retest and have liver BX, and go from there. For the time being, I haven't felt this good for a long time, so I know the treatment was worth it, regardless. I am so thankful the prayers for Hope have been answered, she has always responded to my posts with a positive view. Conrats, Hope. Now I'm praying for the same results, and in the meantime, I've got my chin UP! Thanks for letting me come on here and vent some.

Pat V

My name is Sheila and I live in Deerfield Beach, Florida

Genotype 1a Viral load 1,000,00

I am 65 years old
I have had hep c for 21 years
My biopsy showed minimal damage, so I opted for no tx at that time and had no sx for 18 years. Then my immune system started fighting this virus with numerous odd sx beginning to present themselves. I will list them:

1) Angioedema, for those who don't know what this is, it is swelling of tissue in or around the mouth and lips. Luckily, my swelling is on the inside.

2) Tendonitis of various parts of my body, the most uncomfortable being my legs and feet, also involved with swelling.

3) Sinus swelling, which is ever present and has been with me for almost 3 years now.

I have been to two hepatologists, and two GI doctors, only one of whom thought tx appropriate for me. I tested positive for cryobulinemia and have a high RH factor and was diagnosed finally as having hep c induced vasculitis. It has been a miserable few years, increasingly affecting my quality of life and my mood. I do take xanax for anxiety and ambien for sleeping and darvocet for the anthralgia and sometimes accompanying pain. I am a 1b genotype, not noted for responding well to the present tx and have a viral load of >1,000,000.

At the present time I am under the care of Dr. Eugene Schiff at the UM center for Liver Disease in Miami, Florida. He is top of the line in every way, including empathic understanding and I recommend him highly. Getting an appointment with him, however, is difficult and the wait is 6-7 months, not too convenient if you are ill. He has put me on the list to participate in a trial for a new drug called Heptazyme. It has worked in petri dishes and on small animals, but is just now going into human testing. It is supposed to slice the virus and not allow it to duplicate, if it works as intended. I am more than willing to be a guinea pig. I have also tried another experimental drug called Anvirzel, but served to exacerbate my sx instead of helping because it stimulated my immune response, just what I didn't need. I was taking a shot a day of that for 6 months, with no sides. I now know, since stopping that it was making me sicker than I was previous to the trial.

Dr. Schiff insists I have "mild" disease, but my body doesn't think so. If I don't get into this study, I will try to wait for Roche's version of Pegylated Interferon and Levorin, a cousin to ribavarin, but without the sides. My fear of tx is not the dreaded sides, but rather it's effect on my immune system and the very clear possibility of my getting sicker with tx. I believe that is why Dr. Schiff is holding back from starting the interferon. At this time, however, I do believe I need to give it a shot, and if I can't get into the study, will press ahead with what is available. I can stop if I can't handle it.

You can use this information any way you choose, and hope it is of value to someone.

Love always,
Sheila

Karen's Story

About 5 years ago I started having stomach problems, and the doctors did every test imaginable. I had x-rays, MRI's, radioactive scans and nothing was found. I kept complaining, but I think by this time the doctors were convinced that I was a hypochondriac and quite frankly so was I. Then in May of '99 while having a severe bout of stomach pain a nurse asked me if I'd ever had my liver enzymes checked. As far as I knew I had, because I had routine blood work with a physical ever year. When she checked my records she found that I had not and ordered the test. When the results came back with elevated numbers my doctor suggested I have a test for hepatitis. Within about 10 days the results came back and the doc told me I had Hep C. I had never heard of it and thought it could be cured easily. To make a long story short. I started researching what treatments were available at the time and didn't like what I found. After being talked into having a biopsy the results came back borderline cirrhosis. I was stunned to say the least. I could not for the life of me figure out where I could have gotten such a horrible disease. I figured those who I had been in contact with over the years should be tested and everyone came back neg, except for my ex husband. Unbeknownst to me at the age of 17 he dabbled with IV drugs and developed hepatitis. When his genotype was checked it was the same as mine. There was my answer. How it was transmitted to me remains a mystery, but at the time with all my blood work, biopsy and genotype in front of me I knew what I had to do. I knew I really didn't want what was available on the market so I looked for a trial which would involve Pegasys. Like I said earlier I researched and Pegasys seemed like the best. I found what I was looking for at Stanford Medical Center in Palo Alto Ca. I called and was excepted for a screening. The study was a randomized on involving Rebetron and Pegasys mono. I passed all the tests and went in to get the meds. After the call was made I was informed I had been given Rebetron, I wasn't happy, but I had signed up for the study and decided to go ahead. After about a week I felt like I was losing my mind and knew it was from the Ribivirin so I cut the dose myself and I kept cutting it until I finally told them I could not take it anymore. They had me continue on the interferon and checked with Roche to see if I could be switched to Pegasys. I was told It had been OK'd and went to pick up my new meds. At this time which was the four week mark they did my first PCR and it came back neg. I started Pegasys two days later and had no problems at all. The sides for me were minimal and with the help of a few pain meds here and there I made it through just fine. I did have one small problem about six months into tx with my thyroid, but it straightened itself out. Oh I had the usual low WBC and neutrophils, but for the most part I stayed really healthy. As of this date 11/18/01 I have been off tx for almost 10 months and still negative. I will have my one year PCR in Jan. My doctor's say I have about a 99% of it never coming back, but if it does I'll do tx again. One thing I found out is if you have a positive outlook and a strong conviction you WILL make it. I wish everyone who reads this the best of luck.

Joanne's Story

Genotype 1b Viral load 666,685

I found out about Hep C August of 2000 in routine lab work. My liver
function tests were way high. My alt was over 200. As I was also on
some blood pressure medicine which can cause liver problems I was first
advised to stop and have liver function rechecked after a month's time.
Liver function tests were still high so I had a hepatitis panel done at
my work. I am a RN and work in a cardiology practice now. I worked as
an icu nurse for many years and have been stuck with a couple of dirty
needles in my time there. Anyhow, the hep C panel was positive and I
was referred to a Gastro doc. He did all the usual blood work and my
viral count was 666,685. I am genotype 1b. Biopsy showed stage 2 with
early bridging fibrosis. I was offered a peg/riba trial and started tx
Jan 2001. I took my shots on friday evenings and spent most weekends
feeling so very tired. By Monday mornings I was ok enough to go back to
work. I worked full time during treatment and only missed a few days
here and there. I found I was moody at times and tearful but managed
the first 3 months without too much trouble. I did have insomnia and
did ask for some sleeping med to help. Ambien did help some but not
much. My appetite was not as good and I did have some trouble with
nausea but not too bad. I did not lose any weight on treatment. I had
my first pcr at 12 weeks into treatment and was neg at that time. That
news gave me the strength to continue on. I did finally ask for
something more to help out with depression. I got elavil and it did
help some. I did have trouble with anemia and low white count but was
able to continue at the full dose of peg. At three months the riba was
dropped to 800 mg a day per the study protocol. It was about 3 months
into treatment that my hair really started to fall out. I was upset
about this and just hated to look in the mirror. On June 15th I was at
work and noticed this weird gray spot in my vision. It lasted for about
15 minutes and went away. I wasn't even sure it was real. It came back
later that day but only briefly. I mentioned this to my study nurse and
she told me it may be a sign of retina trouble and had me see a retina
specialist before I could continue treatment. So I was set up the next
day to see him. I was told that I had retina hemorrhages in my right
eye. At that time I was told if I had any more visual trouble not to
take anymore interferon. About a week later I woke up and could not see
out of my right eye. It didn't last long but was enough to really scare
me. I went to see the eye doc again and he said I had more hemorrhages
and had something called a central retina vein occlusion. That was June
29th. I was put in the hospital for 2 days and was on IV blood thinner
and discharged later on a blood thinner pill called coumadin. My 3
month post pcr was still negative. My 6 month pcr just came back last
week and I am still negative. My alt is 22. I feel great! I am
exercising at least 5 days a week after a full day at work. I don't
ache like I did prior to treatment. I only did half of the treatment
for my genotype 1b so I am indeed blessed. I am supposed to come off my
blood thinner after Christmas. I still have the hemorrhages but they
are slowly clearing and I don't have to go back to the eye doc for 3
months. I've got my life back at least for now. And I am thankful
every day.

Joanne

Doris & Vic's Story: (Canada)

Vic's Genotype 3a Viral Load 1,500,000

Bonnie's Genotype 3a Viral Load below 850,000

Quite by accident, as is often the case, I was diagnosed with HCV in Nov/99. My Doctor suggested that my husband, Vic get tested as well. sure enough, we both had it. To say we were scared would be a gross understatement! We were frantic and very uneducated about hepc.

The Internet and a large support network of fellow "heppers" gave us the tools we needed to begin all the relevant tests. Vic's tests were always higher than mine; yet never so high as to cause alarm. His PCR (viral load) was a million and a half. Mine was below 850,000. His AST, ALT's hovered around 90-95. Mine were 35-40.

We asked our local Doctor to send us to a 'Gastroentologist'. Armed with our list of questions, off we went. This Doctor, who treats many HepC patients, told us that if he had to chose which of us was in worse shape, it would have to be ME! I was floored; Vic was frightened. We left there in a panic. The reason this Doctor said that is because I have several "spider-nevi" on my upper torso. A sign, for some, of liver damage. It also happens to some women after bearing children. My biopsy proved that Doctor wrong--I had no damage at all, my liver was, and is, in perfect shape. The relief we both felt is hard to describe.

A few months later, after much encouragement from my on-line network of friends, Vic went for a biopsy as well. The results were early cirrhosis. We were in shock! We also knew that his best bet was to get on Rebetron ASAP.

In Canada, there are certain protocols one must meet in order to get on this therapy. Vic did not meet those protocols. However, we convinced the Doctor to prescribe it under what is called "Special Authority".

Vic and I are both Geno type 3a's...so Vic began his 6 month round of treatment. The idea was that 3a's are easier to treat, hence 6 months was sufficient time to clear the virus.

He responded to Rebetron right away. It was a tough time; he had a lot of hair loss, major muscle pain, flu-like symptoms, nausea, "dry eye syndrome" and a few other side effects. But, the best part was; he was responding...that made it all worth while. He finished his 6 months and soon began to feel better. His hair even grew in, thicker and no gray!

Then, in September/2001, the Doctor called us at home. The HepC had come back. Vic had relapsed. Staying positive at a time like that was one of the harder things I've had to do. We simply carried on--found a new Doctor, a Hepatologist who was conducting studies with the as yet Not Approved in Canada, Pegasys. Vic and I traveled to the city to meet this research Doctor and his team. A full day of interviews ended with a meeting with the head Doctor. He assured us that Vic could get on this 'Peg study" early in January 2002. Last week, we got a call from them. It seems Vic has been turned down for this treatment. He suffers from chronic pain and has for many years, even prior to our Hep C diagnosis. If you are taking pain meds, you don't qualify for studies. Today, we are in a sort of limbo; waiting to see if there is some other way to get Vic on treatment. Since he has early cirrhosis, we feel it is "playing with fire" to do nothing.

Things will work out...and as our Doctor said, "it took 30 years for Vic's liver to get to this point...he has time" We look forward to 2002 as the year that Vic will beat this dragon! His PCR and other tests at the moment are rising...typical with post treatment releasers. His viral load is around 400,000 (low) and AST. ALT 's are 70-75.

As for me...as long as my tests keep coming back the way they are, and until there is a better way to treat and eradicate Hep C I won't be opting for any treatment .I feel fine; weary some days, but I chalk that up to middle age, not so much the hepc. We have totally changed our diets; eating well is so important! Of course, no alcohol was an easy decision as well. It has been a strange few years, since we discovered the Hep C. I often think in some ways it is better that we both have it, as opposed to just one of us. We are in a unique position of total understanding of each other...endless support for each other...and sharing another journey or phase of our lives, that we hope will be just a dim memory at some point. I wish anyone reading this all the best in your own Hep C journey to wellness!

UPDATE MAY 2005

Today we got the results of Vic's 2 year pcr--still undetectable for HCV! We are thrilled, of course.
Many of you will recall that at the time my husband needed treatment (cirrhosis) we were unable to get tx here in Canada. Only the "old" tx was available, and Vic had done it and relapsed. Smace made sure he got a full one year supply of Peg.
I was fortunate enough to meet Smace once before she passed away.
Today we have shed many tears for our dear friend who knew treatment was not working for her, but she made sure it got to someone it could possibly help.
We love you Smace & will always be so grateful for your precious gift!

Sue's Story

Genotype 3a Viral Load 9,000,000

My name is Sue. I am 46 years old, and I live in Novi, Michigan

In October of 1998 I was watching a television show and they were interviewing someone with Hepatitis C. I was aware of the disease, but didn't know much about it. After listening to this interview, I realized that I was at risk for contracting the disease and made an appointment to see my General Practitioner. Please keep in mind that I had never been sick or had any symptoms and usually worked 45-50 hours a week. After receiving my blood work back, my doctor confirmed my worst fears that I did in fact have Hepatitis C. I was shocked and immediately went to my parents home and started crying because all I did know was that there was no cure and I thought for sure that I had only months to live. I was referred to a Hepatologist and had a biopsy which showed I was stage 4 cirrhosis and had a 9 million viral count.

In February of 1999 I started a year of combination therapy which involved Interferon injections 3 times a week and 5 Ribavarin pills daily. The first 6 months I was able to continue my employment on a limited basis, but after that the side effects were so severe that I had to go on disability which fortunately I had through my employer and it was approved right away. Psychologically, I was a mess. I had worked my entire life and led a very active life and within 6 months of treatment, I was reduced to staying at home almost every day. I did have pain meds which I took when the joint and back pain became so severe and I also took Xanex to sleep at night. I finished a year of treatment in February of 2000, but unfortunately they called me a partial responder because I was only able to lower my viral count from 9 million to 2 million. Combo therapy took a great deal out of me both physically and mentally, so I decided to take the summer off and get my health back. That was also difficult. I expected to start feeling good right away, but it took me about 5-6 months before I started feeling good again. It was shocking to realize how much the therapy affected my over-all health.

In October of 2000, my doctor put me on "Infergen" (high daily dosing of
Interferon). I did 6 months of Infergen and all my liver function tests had come down below 200. However, I was not considered a responder because my viral count was still 2 million. I once again decided to take a few months off and get my health back. At this point in time I believed that nothing would rid my body of this dreaded disease, but I still had some nagging thoughts that I should start treatment again or do something to keep fighting, especially since the Peg-Intron with Ribavarin therapy had been approved in the fall of 2001.

On September 7, 2001, I started the Peg Therapy which involved Peg-Intron injections once a week and 5 Ribavarin pills daily. The doctor immediately had to reduce the pills to 4 a day due to low white blood count and platelet count. The first few weeks the side effects were severe but not as bad as the previous Combo Therapy. I didn't have any expectations of this therapy working and had decided that I would not continue if my PCR and blood work did not show a significant response. After 6 weeks I had my PCR done and I had to read the numbers 10 times because I could not believe that in 6 weeks, my alt, ast, etc., were all within normal range and my viral count was non-detectable!! The first thing I did was say a prayer and then I telephoned my family. I am a 3a genotype and my doctor was not surprised at the results. He expected me to respond but not that quickly. My therapy will last for 1 year so I should be finished by September 7, 2002. After about 7 weeks, the side effects have became minimal and I am now back to work on a part time basis. I don't like having Hepatitis C, but in spite of it or perhaps because of this disease, it has made me a better and stronger person. I am thankful for each and every day and I will continue this fight and attempt to help others who are afraid and suffering. I have no regrets about doing treatment because each time I went through treatment, I at least helped my liver out a great deal.

This certainly is not a story to promote treatment and/or Peg Therapy. It is a story to promote hope. It is not just a word, it has meaning, and it is possible for all of us. Being undetectable does not change the fact that my liver is severely damaged, but it allows me some much needed time until a cure is found, knowing that there will be no additional damage if I remain undetectable. I have no idea where God's path is taking me in this journey, but I will continue to follow his lead knowing that I am in safe and secure in his hands

Our Cherished Friend Passed on March 2, 2004

http://janis7hepc.com/in_memory_of.htm

Saba's Story

I have read articles concerning hep-c and how it causes more anger than other disease. I was always kind of high strung and aggressive. Over the years was working towards getting closer to being a better person. it was a VERY slow process, but one that most of my family and friends could see, if they choose to look my past history. I had endure 10 years of cancer bouncing around my grandparents and parents. I tried to quit smoking 3 times and was finally successful on June 15, 1999 of being smoke free one year. What made me REALLY try and succeed? My Mom was diagnosed the third time with cancer. It was in her prancreas, colon and lungs. She died May 16, 1999.

Around the end of June, 1999, I tried to get level term life insurance and was bounced because I was diagnosed with Hep-C, well, at least my wife got a GREAT rate... As I was coping with the loss of my Mother and finding out about HCV, my Dad informed me in August of 1999 that he had liver cancer. I went with him to the doctor, and he was told he had four months to live. In October, 1999, I started the combination therapy with great trepidation and preuse of paxil to keep my nerves in check. FYI, I flt like my own doctor during this time as I was educating my GI about this disease, current treatments and it's side effects. Wasn't too bad, but was Very fatiguing and made me feel like I had a constant flu. However, I continued to work.
After Thanksgiving Dad decided to try and fight his disease with a treatment offered in Mexico, not the States. He made it back in time to die on December 23, 1999.

FYI, did you know that combination therapy can cause rages and suicidal tendencies. Three weeks later a close family member tried to commit suicide (twice in one week) and I lost my security clearance at work, supposedly for being defensive (not angry) on phone with an investigator. That was when my family lost me, or should I say lost myself. All the tragedies of life finally buckled me to a state of uselessness. I still completed my treatment, however living like a hermit until work called me to be there versus working as a hermit from home and VIOLA!!!! I finally lost my temper Real -Time in front of clients of mine and lost the program I headed for three years. But, thank God, I still have my job.

I am virus free (I think) was just re-tested. But at this point of this story, is that the fact that I made it through with Love of my wonderful wife Karen and children. I am getting better (remember the slow process I described at the beginning) There is H O P E

Thank you, to my Delphi Family to which the majority of times provided the best outlet for my ranting, ravings and bundles of nervous engery from a long two year period of dealing with HCV treatment and family deaths and struggles. If not for the people in this community, I would have floundered even greater. I thank God for leading me here.

Love ya
Saba
( Little note , when Saba emailed us about his story, he said he is still undetected !!!!!! )

Bette's Story

Viral load 4,000,000

I would like to begin by thanking my family for their unconditional love and support, especially my husband. He gave me his strength and courage, when I felt that I had lost mine....
My name is Bette, I live in Brooklyn, New York. I am married to my
soulmate, Driss. I have a daughter Melissa and a son named Malachy.

Two adoreable grandchildren, Malachy and Justin.

I was diagnosed on April 14, 1995 with Hepc. I had been feeling great,
prior to being diagnosed. I had been power walking and was walking 6
miles, 3 x 's a week. I was referred to a Gastrologist, and had a battery of additional tests. I had my biopsy in May, and it was determined that my liver had not been damaged yet. I was told my viral load was 4 million and that I should begin interferon treatment at once. I was informed that interferon only had a 15% chance of working, and without treatment I had a chance of getting cirrihois or liver cancer sometime down the road......

I was scheduled to begin treatment at once, but I went on vacation to
Puerto Rico instead. I knew that before I healed my body I needed to heal my soul. My time in Puerto Rico was very valuable and healing. I needed time to accept what life had just thrown into my face. I needed time to grieve my life as I once knew it, for even then I knew that my life was never ever going to be the same! I allowed myself to be sad and cry and then ... I got mad, mad at this horrid disease and vowed that I would beat it.

I began my treatment on August 7, 1995 and had decided to continue working during my treatment. I wanted to keep my life as normal as possible. I would not let Hepc be my life, I would live my life despite Hepc. My first six months of treatment were very hard, I did not have the support of my two doctors to call them jerks would be too kind. I found the injections to be very assualting, and was scared to inject myself, my husband, my lifeline administered my interferon injections for 3 years, never once complaining. However, after 6 months, I had failed at treatment and was labled a non-responder. That was the worst six months of my life, I had terrible sides and these two docs did nothing to relieve me. As a matter
of fact, they actually made it worst, by having me take the injections in the morning knowing that I was working. I was very fortunate to have the support of my Boss and co-workers, for I was often very sick at work. I was told that there really wasn't anything further that they could do for me, I was left blowing in the wind.....

After interviewing, several doctors, I found Dr. Zimberlist, the most
caring and supportive Doctor that I have ever known. He promised me, that together we, would beat this, and that I should not worry about getting cirrihois or liver cancer. He decided that I should take interferon for a year. This time, my treatment was not as bad, for he had suggested, that I take my injections in the evening, and when my sides kicked in, to simply take a sleeping pill to avoid them. After this round of treatment I went into remission for 8 months ... however, I relasped, or as I call it "my fall from grace"

I allowed myself, to lick my wounds and regroup, for I wasn't finished. I have alway felt when the going gets tough, the tough just have to get going....

For I still had hope in my heart, and I wanted to try again. I did another 18 months of interferon, and was starting to feel like the "Poster Child for Interferon," but this was the only game in town and I was willing to play.....

I am pleased to say, that my 3 years of treatment, which was not easy,
however, it was necessary, it finally have paid off. I have now reclaimed my life and feel great.

Sometimes there are Happy Endings. You just have to have Hope!

December 16, 2001, was my anniversary of being Virus Free for 3years and 7 months.

Please visit bette's great site !! http://forums.delphiforums.com/hopenow1/start

Bills Story (Fix it)

Now Virus Free

My name is Bill (ifixit56) in 1992 I started my current job and they were conducting a blood drive so I went to donate blood. A short time later I received a letter in the mail saying that I had been exposed to hepatitis-c.

Not knowing what that meant I made an appointment with my doctor who luckily shared a practice with a gastroenterologist. At this time there wasn't a lot of information on hep-c so he told me what it was and what treatment was available which at the time was Interferon.

Since I had no symptoms we decided to just keep an eye on it at the time, several years later and I don't know why he suggested I go for a biopsy. When I did and it came back that I had mild cirrhosis.

I decided to do the interferon my doctor told me the success rate was poor and that he didn't really like prescribing it, but that it was all he had. I then did 1 year of interferon, and it lowered my viral load but didn't get it down to undetected. After the year we decided to wait for rebetron to be approved. I think that it was 6 to 8 months later when I started rebetron therapy and I did a 6 month treatment 3 shots a week and 6 pills a day when I finished I was undetected which was a great relief Six months later I had relapsed and my dr. said that they were now recommending a 1 year treatment so that's what I did.

I finished my last shot on Dec.23 2000 and I am still clear as of Nov.2001. During the last treatment my wife and I split up we had been married for 19 years and this was very difficult but I don't think she could handle life with me any more. I can't say I blame her because from the treatment it was like I wasn't there I lost my personality and we didn't even talk. Looking back I wish that I had gotten more help in dealing with things, but I don't have any regrets because I'm free of the virus now and after 8 months off treatment the fog lifted and I've been feeling better than I have in years

I have lots of energy I go hiking in the mountains almost every weekend and I'm really enjoying my self and my kids. I find that I don't worry about the small things any more and I may be healthier mentally and physically than I have ever been. I don't drink and I try to eat healthy (except for the holidays) I hike as often as I can and really enjoy every day.

I would just like everyone to know that you can beat this and have your life back and feel great so don't give up. lastly I would like to thank you Tina and all the other people who put so much effort into these sites when I was going through treatment. I wasn't aware of the network of friends out there to lean on and it would have made so much difference to know that others felt like me and that I wasn't alone. I hope I can give others the strength to get through the bad times so they can feel better too.

all the best wishes

Bill

Lobo's Story

Switching from Combo to Pegs

Geno 1a

Hi everyone, I hope everyone's as well as can be!!
I promised Myer, (and a few other...) that I would do this.
I'm not the most articulate writer, and I have a tendency towards rambling, so please, bear with me...
For the benefit of those who haven't seen my profile, I'm a 38 yr old male, construction worker, (still working) I've been on the combo (3x/week) for 24 weeks now. My geno type is 1a, (one of the least responsive to treatment) I was originally diagnosed in January 2001, after blood was drawn to determine the cause of my constant, seemingly "chronic" fatigue. once the "geno" was determined,
I immediately began the ever popular, combo treatment (3mu, 3x/wk, + 1200 mg/ribaviron, 3/morn., 3/night).
It was explained to me that the majority of those on treatment, experience some side effects, some worse than others, mostly "flu-like" symptoms.....achy, tired, chills, sweating, possible headaches (which I never really got...) loss of focus/concentration, depression, and/or suicidal tendencies......
With the exception of the headaches, and suicidal tendencies, I experienced all of the above to one degree or another.
My first week on combo, was devastating...for a few hours, I thought everything was going to be alright...then like a brick wall, it hit me!!! I couldn't get warm...at the same time I was soaking wet with sweat!!! My whole body ached, everywhere!! If it weren't for my wife bringing me food, (she really is one in a million!!) I wouldn't have eaten, because I couldn't get out of bed!! absolutely NO energy!!
As time passed, it all got better, (except the concentration, that's been gradually worsening the whole time...I feel as though I'm slipping into senility at a VERY premature age.) But the sweats, aches, chills and fatigue all but disappeared...( I can't stress enough the importance of a proper diet, and an overabundance of distilled or at least filtered water...great for energy levels!!!)
I, at one point, actually began to look forward to "shot-nite" because it seemed I was gaining energy from the meds.
All in all, everything was tolerable. I continued to work the whole time, (tired, but not unable, to work.)

THEN THE SWITCH.....

Peg comes in four doses, I'm on the highest of the four...
(150 micro-grams @ .5 ml) *DOSAGES BASED ON WEIGHT*
BE SURE TO HAVE SOMEONE AT YOUR Dr.'s OFFICE EXPLAIN THE EXACT MIXING AND ADMINISTERING PROCESS....MINE DIDN'T!!!
After the experience with the combo, I was more than just a little concerned that even though my body had been taking the interferon for six months, that the larger administered dose might "kick my butt", at least in the beginning. Up to this point, everyone's been telling me that the Peg is better, not so many energy, and emotional swings...less highs and lows.

Well, "shot-nite" came and went, and was basically uneventful...
I didn't do any Tylenol, went to sleep, got up the next day and actually made breakfast for my wife and kids...(not a real frequent occurrence at my house!!!) and even felt a little better than
"normal", and took the kids to "playland", and visited relatives.
Again, I was very optimistic...
Day #1, was a pretty good day, that nite, was a little uncomfortable.
When we came home, and I went to bed, my whole body began to feel "tingly", sort of like the onset of a flu-bug, couldn't get comfortable in bed. I tossed and turned most of the nite. My whole body sort of aches again, as if maybe I'd been working on some farm, plowing fields the "old fashioned" way, from sunup to sundown, and then sat on the front porch swing, and couldn't get up!! That's what my body feels like. My wife and kids are out...(beautiful sunny day) and I couldn't go...I just don't feel up to it. As I write this, I sit here in sweat pants, a "tee" shirt with a sweat shirt over it, and "heavy, woolen, work socks". I should tell you, I usually wear shorts, and a tank top around the house. I have a blanket wrapped around me, and I'm still cold. I want to sleep, but I've tried and I can't......I'm sort of hungry, but nothing seems very appetizing.....
I'm on my third quart of water today, and it's just after 1:00 in the afternoon, and my mouth is still pasty, and dry....
That about sums it up right now...

It's not nearly as bad as the very first shot of
Interferon (alpa 1a, combo) was...but it's a little worse than I had hoped. If this lingers on, Work tomorrow is going to be hard.

I'm gonna go now, but "I'll keep you posted!"

If anyone has any questions, I'll do my best to answered...

"Best wishes, and Good luck" to each and every one of you!!

VISI"T THE JANIS WEBSITE, INCREDIBLE SOURCE OF INFORMATION"

"May all of your today's, be better than your yesterday's!!"

C'ya...Lobo...

Julie's Story

My reason for doing my story is very simple. It reminds me how far I have come in just 2 years time, and hopefully encourage others in similar circumstances.
My name is Julie and I am 34 years old. I got Hep c 34 years ago at birth from 7 blood transfusions that I needed to stay alive. In 1997 I was donating blood and was called into their office where they told me I had tested positive for Hepatitis c. I had no idea what it was, so I went to a Dr and had the test done over thinking they made a mistake. I was told that again I had Hep c. I asked the Dr what Hep c was and he told me not to worry about it it was just something I had and was nothing at all. I continued on with my life not even thinking about this disease. In September of 2000 I had gone on a trip with my husband to Maine and had a great time there, but I had this red rash all over my legs. In October I was preparing myself to go in to have a gastric bypass to help me lose weight. In just 1 month I had gained close to 100 pounds. I could barely walk or even get out of bed. The surgeon that was doing the operation told me that before he did the bypass he would do a liver biopsy . At this point I had no idea I was very uncomfortable because I had this big open wound being held by metal staples. It took me about 7 months to get rid of the fluid by using diuretics. I was seeing a top Dr who was the head of the transplant team. I was told by this Dr that I could not go on tx , and that I would not survive a transplant. So he handed me my death sentence. No tx, no transplant, and a 50% chance of surviving the next 2 years. 1 yr later in 2001 I had to have my gall bladder removed, surgery was risky, but I got through it with blood transfusions and a hospital stay of 1 week. Again I came home with another incision about 10 inches long going from the middle of the other scar straight.
It has been a long 2 years since this whole thing started. I had to leave a very good job that I really loved. I was only supposed to be gone for 8 weeks to recuperate from the bypass surgery, only it turned into not being able to go back at all. So here I am looking for another Dr I am on my 4th dr now and still looking until I find someone who will listen to me and give me a chance to live.I still have ascites but its not as bad as it once was. I get cellulitis at least once a month now . Cellulitis is a very dangerous infection which causes a lot of pain and a very high fever. I am so thankful to be alive, but at the same time I struggle daily with depression. I have trouble sleeping, and I have fibromyalgia, along with the symptoms of end stage liver disease and Hep c. I will continue to fight as long as I can and hopefully will win. Even if I do not win I am blessed to have so much love and support in my life. In the midst of all that happened I got married to a wonderful man who takes such good care of me.

Danny's Story

Hello, My name is Danny, 47, married, 4 children, an artist/carver and I love the Yankees! I have type 1a HepC. The interferon/Ribavarin treatment did not work for me. I have to wait a couple of years before I will be seen by the Transplant Board again. They said that to operate now would rob me of at least a few years of quality life and therefore want me to wait until the symptoms begin to worsen. I have progressed to end stage cirrhosis and they are watching my alpha pheta protiens now as well. I'm on a strict diet, no salt, iron and so forth. I have a couple of quality year left and I feel like I cannot make any solid future plans right now. I feel tired of being sick and tired, muscle aches and pains in the right side of my body around the liver, increasing mental confusion and forgetfulness, social limits due to fatigue, itchy skin and dark purple spots appearing on my legs, neck and small blood-like spots appearing on my face, bloating of the stomach area and sleeplessness. Other than all that, I get about four to six good hours a day where I'm feeling "normal" and can go about accomplishing what is on my daily carefully chosen "things to do list" however, I do so only with the aid of pain medications for my severe joints and muscles aches. I'm sorry to tell you all this, but type 1a is the worst of all the types of Hep C, in my opinion. My blood work reveals the usual roller coaster up's and downs, except they are increasing and they are keeping their eye out for the rising spike indicating cancer of the liver. That I fear is likely to happen unless I get a transplant before then! I keep putting one foot ahead of the next and carry on my life's journey trying my best at living a healthy lifestyle, with no alcohol few cig's and an appropriate diet and little stress. I can only address my situation by being real about it, facing each day with the knowledge of what I must do to fight on against the Hep C and also making a point of living my life to the fullest while I still can, enjoying life with my closest friends and family as well as being kind and thoughtful of others along the way. I hope this has been of some help to you! Take care!

Danny Cain

Bluesthang Story

Hello all you Hepcats and Hepkitties, I hope y’all are having a wonderful Holiday Season. Some of you know me and to those that don’t I’m the Bluesthang, from way down south in New Orleans. I just got the results of my 12-week PCR and wanted to share this with you.
Undetectable
For those who want to know, my start of tx numbers were
Hepatitis C Genotype 1a
Viral load 1,880,000 IU/ml
AST 99
ALT 167
Biopsy: Grade 3 Inflammation
Stage 4 Cirrhosis

Current numbers are:
AST 36
ALT 39
PCR less than 26 Copies/ml Undetectable
Heptimax ™ less than 5 IU/ml Undetectable

Just a few words to the newbies and those contemplating tx. I’m 49 years young with a hard to treat genotype. Have had this for 25 to 30 years and now have cirrhosis. But it seems that the tx is working. In the long run only time will tell. I felt bad for feeling good on tx when so many were having such a hard time (Now here he goes beating that drum again) but I have to say this. Never did I have any symptoms and now that I’m on tx I don’t have any sides. This is not a devastating course of tx for everyone. I’m here to tell any that care to listen, this can be done. I work full time and lead a full life. Let me be a shining light for those that need it. A beacon in the night. I have strength and a shoulder to share. When I first came here I was afraid and y’all helped me. I will never forget the love and caring you showed me. To all my friends. Have a wonderful Holiday Season.
((((((((((((Y'ALL))))))))))
Bluesthang

Wstport Story

I’ve met so many wonderful people here and everyone has encouraged me to tell my story. If my long tale of woe with this disease can help someone, it is my pleasure. During my years of struggle with this disease, I was alone. There was not all the support systems that we have today. I just stumbled my way through things, desperately trying to make sense of it all.

In 1968, I came down with a horrible case of hepatitis; I was hospitalized for 6 weeks and home for another few months. My illness was caused by my bad behavior at the time. It was the 60’s, things were nuts and I was young and stupid. As time went by the fatigue and jaundice would come back to haunt me. They called it Non A Non B and then chronic persistent and then chronic progressive…they called it many things over the years. I was told there is really nothing we can do for you but get lots of rest. As the years went by it was obvious to me that this was a lifetime thing.

Then in 1980 my gallbladder had to be removed and the gastro doc said “We found a strange grainy growth on the outside of your liver but it doesn’t look like cancer to me”. A biopsy was taken and then was promptly lost it in the lab. He didn’t know what it was and I was told to get lots of rest. The bouts of fatigue continued and the medical establishment had no help to offer me. Maybe I’m just dwelling too much on things, maybe you should see a shrink.

Then in 1991, I had a normal yearly physical and the young medical student said you have hepatitis C and this is a very serious disease, you need treatment right away and be sure to get lots of rest. This monster finally had a name; I wasn’t crazy all these years.

Round One Treatment
I was referred to a good gastro doc (who would prove to be the best hepatologist in research in New England). He promptly diagnosed me with a biopsy and would I be interested in being in on the first clinical trial of a new drug called Intron. He explained that it showed promise but the bugs weren’t out it yet. So I started my first round of treatment, 6 months of Intron 3 shots/wk. At the time there was no outlined trial, he was making it up as he went along. They saw me every 2 months and the side effects were awful. After six months the trial ended and it didn’t work. They now call it a non-responder. At this time they said I was stage four cirrhosis and gave me 18 months to live and get lots of rest. (Seems like all docs’ could ever offer me was “get lots of rest”). So I went back to my daily life as I always had but now I knew about this monster. This was the point that I switched to mostly all natural foods, multi vitamins and started drinking lots of water. I was trying to give my already sick liver less chemicals to process; it just made sense to me.

Round Two Treatment
In 1993, doc asked if I would be interested in doing another round of treatment, this time Intron A 3 shots/wk with phlebotomy. (Removing a pint of blood every two weeks) They had made the iron connection and the thinking was that if they got your iron count down, the Intron could do its work. It scared the hell out me to find that western medical experts had resorted to “bleeding”, like the leaches of medieval times. Well, you can well imagine this picture, the awful side effects of the medication coupled with the anemia (caused by blood loss). It totally flattened me for six months. Again I was a non-responder but please get lots of rest..

So again, I went back to my daily life except now my cirrhosis was advancing and starting to cause problems. In 1995 I was diagnosed with Type 2 diabetes and had to go on insulin twice a day. From this point on with my advancing age, HCV, cirrhosis, diabetes my health was starting to slip. I was coming to the end of my working life; I could no longer hold it all together. I am grateful that my employer stood by me and made the medical leave issue easy for me. I eventually ended up on SSDI.

At this point doc says, “Would you like to try the newest trial?” And my response was “I’ll pass on this one, I’m too sick now”. Six months later he changed my mind for me. “Hey, we are having go luck with clearing viral load with the new combo treatment Pegasus/Riba so why not give it a try”. The simple fact that maybe, just maybe this could be the cure is what changed my mind. People in my clinic that I have known for years, were all doing well. So OK, here we go again!

Round Three Treatment

In 2001, I started the HaltC trial, 48 weeks of Pegasus/Riba combo treatment. My genome is 1a and I am advised that it is the hardest to treat. (It figures, just my luck to get the hard one) My starting biopsy said I now had stage 2 cirrhosis. Well I thought that cirrhosis was irreversible and asked how can one go from stage 4 to stage 2. His response was that some patients had showed a slow down and reversal of fibrosis helped by the failed Intron treatments. OK…….. But then he said well maybe the way we rated the first biopsy all those years ago wasn’t as accurate as we do now. Made sense to me, maybe my good nutrition helped to restore and rejuvinate my liver. This was the first sign of hope I had in 30 plus years. So I started the trial. I found Pegasus/Riba a much easier go around then the last. Yes, riba has a new crop of side affects but the Pegasus was much easier to tolerate. I cleared my viral load by week #8 and stayed clear through the rest of the trial. Post treatment I was still clear at 3 month PCR.

WOW….could I really, maybe, just maybe have killed this monster? I’m hopeful for the first time! I’ve had this puppy my whole adult life; I can’t remember what it is like to actually feel normal. So I’m hoping and praying (a lot) that maybe this round has done it. So in less than a month I have my 6-month post treatment test (I am advised that this is the critical one) if you can get passed this one the odds go up sharply that you may stay clear. So pray for me.

Words of Wisdom (not sure I have any other than my years of experience)

1. Don’t get HCV in the first place.
2. Try to modify your diet with less meat, vitamins and exercise. Most important, drink lots of water.
3. Try to go organic or natural foods wherever possible. Keep the chemicals, preservatives, nitrates etc out of your life. Don’t give your already sick liver more work to do. Sweat baths help to purge toxins from your system.
4. Don’t drink or drug that goes without saying. I’m still working on the smoking though.
5. Don’t mess with your hair (dye, curling irons) you’ll be sorry when it starts to fall out on treatment.
6. Take good care of yourself; you’re worth it.
7. Avoid stress (like this whole thing isn’t stressful)
8. Stay strong and hopeful; depression is a black hole.
9. Reach out to friends and family, trust your heart, and trust in God.
10. Reversal. Pray that with killing the virus, coupled with good nutrition you can actually have a reversal in the liver damage.
11. Get lots of rest.
12. Eleven years ago they gave me 18 months to live, so live your life, love your family and don’t dwell on your illness. Life is too short. So far, I’ve beaten the odds on life expectancy and so can you.

If you actually have gotten this far, thank you for reading my story, I am hopeful it helps someone.
Wstport

Biopsy Experiences

Sues Story

My biopsy was pretty uneventful. I had been diagnosed in 1998 and knew nothing about hepatitis and did not have a computer at home, so I went into the hospital not knowing much at all about the procedure. They gave me some type of pain medication through the i.v., and then wheeled me into the procedure room. The doctor said he was going to take 3 samples and that I may feel some pressure. He was directing the needle via the x-ray machine and he explained that this way he would know exactly where he was going. It was over in less than a minute and all I felt was a small amount of pressure, but I was not prepared for the flood of emotion that took hold of me once they wheeled me out of the procedure room and I saw my family. I broke down and cried for 5 minutes. I think it was a combination of fear or just nerves. In any event, they got me into a room and the hardest part was having to lay on my side for 5 hours. It seemed like an entire day and they finally let me go home after only 3 hours. I felt fine that night and went out to dinner.

Sue, Michigan

Anjulla’s Story

I remember when I finally got scheduled to have my biopsy done, I was a
little bit apprehensive, but knew it was necessary. My first one was CT
guided, which was supposedly more accurate than ultra sound. NOT, well not
in my case anyway. Yep, you guessed it, they missed. I was in a lot of
pain, due to the fact that they somehow took several biopsies of MUSCLE
tissue. The whole experience sucked. After that experience, my Doctor
called me to apologize for what had happened, (my Dr. didn't perform my
first biopsy) he then rescheduled me to try again, with he himself
performing the procedure. Well, everything went great the second time, he
put me on an IV, gave me something that made me feel great, performed the
biopsy with the aid of ultra sound, and actually took liver tissue instead
of muscle. I was not in any pain what so ever, just a little drowsy from the
IV. Having the biopsy done is a must and you will feel better after you
do..........finding out how much if any damage has been done to your liver
is one of the most important things you could do.

anjulla from california

Bonnies Story

I had an "ultra-sound guided" biopsy. When I went in to the hospital, I was put in a room, given an I.V. and eventually was taken into the room where they did the biopsy. The doctor used a hand-held ultra-sound device… and they marked the spot. The doctor showed me what he was going to use for the biopsy… but I really didn’t want to see it! But all the way through, they explained exactly what they were doing, and I did appreciate that. I was given a pain med in my vein. I honestly didn’t even feel the biopsy when it happened, although I did hear the "click" of the needle. My first question was, "Did you really do it?" I was surprised!

Back in the recovery room, I had to wait for hours… partially because my blood work took a dip right after the biopsy (although the nurse insisted it was a lab problem…) and then the doctor who was to release me was in surgery when I was ready to leave! (We all know how fast things move in the hospital… ha!) Still, it was a small price to pay for such an easy biopsy.

During the next 24 hours, as the pain meds wore off, I felt a very slight discomfort in my right side if I took a deep breath or sneezed… but after a day, I felt nothing. I did get a small bruise but that was it.

Years ago, in the early 70’s, I had a biopsy when I was diagnosed with "non-A, non-B" hepatitis. It was not a good experience, so I was hesitant to do it again. But finally, I was tired of not knowing exactly where I stood. I was relieved to find out I was a Stage 1-2, Grade 2... not bad for having had Hepatitis C for over 30 years. How I wish I had done it earlier! My doc had been telling me for almost three years he thought I had cirrhosis… and I had accepted it.. but I also had heard many times that a biopsy was the only way to tell for sure what shape my liver was in.

I could have saved myself a lot of worry if I had had the biopsy in the beginning. I know we all have different experiences with doctors and biopsies, but my experience was good. Even though many doctors do not push patients to have biopsies, I think the peace of mind… no matter what the result… is well worth it.

Sue (Lustig) Story

I found out that I had hep c while I was donating blood for my own surgery. I was scheduled to have a hysterectomy. After I received a letter from the Red Cross saying that my blood was contaminated I called the hospital and Doctors and cancelled my surgery. I received calls for days from my gyno. He was so concerned. He convinced me to have the surgery and one of the biggest reasons was so they could do the biopsy during my hysterectomy while I was under heavy sedation. They actually lifted my skin up and looked at my liver! I was one of the lucky few. All I remember from my biopsy is a little red dot where they had inserted the needle. Not much help to people that need to know what to expect. :)

Doris's Story

Heading into the room where my biopsy was actually done, a nurse was walking beside the bed I was on. As we entered the room, and I saw my Doctor, it was like a damn burst. I couldn't stop crying....not from fear of the procedure, but fear of the results. The nurse took my hand, telling me, "Everyone gets emotional at this point, it's ok" It really helped me, to know I wasn't just being a "baby"!

The only pain I felt was the freezing needle; that was not too pleasant. A few moments later, my Doctor took his sample; totally pain-free , and over very quickly. He told me I had done very well....

Next, I rested for an agonizing three hours...on my side! That part was the worst; it dragged on and on. I was so glad it was all over. The wait for results was tough. My imagination played all sorts so weird games with me. By the time I did finally hear from the Doc; I had myself in end stage liver disease.

The news that, surprisingly, my liver was in perfect shape, stage/grade 0, was the biggest relief! To say I was ecstatic would be a gross understatement! Having the biopsy done was the single best thing I did for myself, since being diagnosed. The peace of mind it gave is immeasurable.

Best of luck to all who opt for this procedure; and good luck to all on your journey with HCV.

Lynn's Story

I have had 3 biopsies and all have been mostly uneventful.
After being diagnosed with non-A non-B in the mid 60's I continued to work and lead a productive life. In 1992 I got very sick, tired, cranky, I just didn't feel good. I went back to the doctor and he then told me after more blood test the NonA NonB hepatitis was Hepatitis C and I need a biopsy to determined the degree of damage to my liver.

The first in 1992 showed fibrosis and I was in the hospital over night. At that time they had me drugged heavily. I did have problem with the meds they made me very sick to my stomach. The biopsied spot didn't hurt but for several days after my right arm and shoulder hurt like crazy. The doctors called it refereed pain because the liver doesn't complain so something says this hurt.

In 1996 I had my second which showed signs of cirrhosis. It was done lapriscopicly when I had my gallbladder taken out. Another over night stay and no complaints from my liver just right arm and shoulder pain for a few days.

In 2001 I had my third and it showed advanced signs of cirrhosis I declined all meds to relax as they make me very sick to my stomach and it was over in less than 2 minutes. Again unbelievable pain in shoulder and right arm.

I'm from Michigan. I'm very active in advocating for Hepatitis Patients. If I can help you let me know my email addy is
hepcandme@cbpu.com
Lyn

Grizz Story

First they had me lay down flat on a bed and with the help of some kind of scan or x-rays device, they located my liver and marked a spot on my skin where they were to insert the biopsy needle.

Then they wheeled me to a private room. While waiting on the doc, I tilted the bed up to watch tv. They told me the biopsy would be slightly painful but quick. They asked me if I wanted something for pain, but that if I did I'd need someone to drive me home.

I said no, just do it to it, because I had to go to work as soon as released. Well, it took them 3 tries to get a proper sample. After the first try they went to a bigger needle.

Yikes.

I've seen smaller bicycle spokes!

After the 2nd attempt the doc noticed the bed was tilted, and said oh, the table must be flat. I told him 3 strikes and you're out. They told me this was only the 2nd time they knew of in VA history that it had taken 3 attempts to get a sample.

Lucky me! Haa

After being kept under observation for the required time I left for work. The pain was minimal and tolerable once they got done playing "stick the fat bear." LOL

MJs Story

I had a liver biopsy done on Oct.8, of 2002,in Boise, Id. I tried to read as much as I could to learn about the biopsy procedure. What I read seem pretty simple for me. I got checked into St. Lukes Hosp. at 11:00 am. After leaving the desk, I had to go to another waiting area to get my blood drawn before the biopsy. I was all alone, and it was kinda scary for me. Mike couldn't come in because of having a bad cold, and a sign in the hospital, said anyone with colds or flues can only go so far. I thought that was strange. Anyway, I go get blood drawn, but first the nurse had to find out if I was a bleeder or not. The nurse showed me this little thing and said it will cut you a little so we can see if you are a bleeder. I said ok. First she put a blood pressure strap on my arm, and pumped it up to 40 pounds and clipped the hose so the pressure would stay at 40. Then she cut me, then she used this cotton round disk to draw a little blood at a time. I went as far as 7. She said that was good. Next I went into the ultra sound room and my Dr.Ellen Hunter showed up. Talked to me about the procedure that she was going to do. First she had me lay on my back, put jelly stuff on skin above the liver. I asked if I could see the picture of my liver. She said yes. I was so amazed to see my liver. I seen a couple black spots on my liver and I asked her if that was normal. She said yes that the spots I saw was my blood vessels in liver. I knew I could trust her. Then she marked my skin with the help of another person that ran the ultra sound xray machine. Then I turned on my side, she showed me this long looking needle and demonstrated how the sound would be. She said are you going to be fine with the noise. I said yes. Then she numbed the top of the skin around the marks where she was taking the biopsy, then she pushed the needle into my liver area and numbed it. I flinched a little, but I had to be tough. She took two samples of my liver. I asked if I could see them, and she said yes. I saw nothing wrong with them. Looked normal to me.
This was such a simple procedure, and being able to see the picture and the samples was the neatest thing I thought. Nothing hurt while going threw all of that. Like I said, I was scared, but I think being scared was more of what will the biopsy say. It turned out on a scale of 1 to 4, I am at a 2, with some scaring, nothing else. My Dr. said that we may have caught it before the liver had more damage.
Moral of my story:
Nothing to Fear, but fear itself.

If I had to do it again, I would. I conquered my fear, and it made me stronger and more determined to fight this DRAGON and relieve it of its hot breath.

King Fish's Story

For me, the worst part was 4 hours of dr.s and nurses not being able to start an IV on me.

So, I kinda went "cold turkey" (no IV drugs) through the MRI (?) guided biopsy. It was a piece of cake compared to all the probing and sticking (in attempts to start IV).

Dr. did give local antistatic and was explaining everything (yeah we were chit chatting all along) as he went. The needle biopsy was hardly felt...like a dull pressure.

They kept me in room for a few hours afterwards. Waste of money.

For the next few weeks I felt a little sore on liver side...nothing to really complain about.

On my scale of painful medical tests I have had over the years -
1 least painful, 10 most painful...

I would rate liver biopsy as a 1.
Fear factor 7

(removing the IV attempts from the equation)

Janet's story

My experience this past April was the same as what others are describing. I was nervous (never had done anything like that), but it was quick and painless.

I did have to go to the hospital lab the day before, to be checked for "bleeder" potential -- I assumed that was just a normal safeguard procedure, because I had no reason to expect a problem. (They just made a small cut on my forearm, and timed how many seconds it was before the bleeding stopped. I was in and out of the lab in 15 minutes max.)

The next day the biopsy procedure itself, including setup, didn't take more than 15-20 minutes. They inserted a needle in the back of my hand -- I'm pretty sure that was for the light sedation (relaxer). But the biopsy team and I were talking to each other the whole time. There was another needle to numb my abdomen area, but I didn't feel that. I felt some mild pressure when they took the sample (presumably because they were pressing on my abdomen), but that's all.

Then I was wheeled to a private room where I stayed until the sedation wore off. I was in that room (with nurses checking on me frequently) for about 3 hours, during which time I still had NO pain, had a regular lunch, watched TV, and slept. At that point, I was even enjoying myself!

No further problems after I went home...except for worrying about getting the test results. (The doctor I should rest for the remainder of the day, which was fine. He also said I might have some soreness and might have a metallic taste in my mouth, for a few days, but I didn't.)

Of course, it's always preferable to have someone go with you, for moral support AND for a ride home.

Note: My 12/7/02 edits were just for the sake of a little more accuracy (particularly for the bleeder check), since Myer is going to use these stories (thank you Janet)

Vons Biopsy

Hi All

I did my first biopsy yesterday. The biopsy itself was not a traumatic experience, but I did experience a lot of waiting. I entered the hospital at 10 a.m., and left about 5:30. The biopsy took about 20 minutes. After the bio, I had slight pain under my right breast which is subsiding now. I can't believe I've made it this far. When I was first diagnosed, I just couldn't get it together and was at a lost as to what to do next and when. This BB helped answer my questions and calmed some of my fears.

I still have a ways to go, but taking things one day at a time seems to be working for me. I won't get the results for another 3 days. Until then, I will praying for the best.

Thank you all

Judys Story

HI Myer,

You sure can use my story on my biopsy anytime...what was suppose to be a short but sweet thing at the hospital, ended up being kinda funny in the long run.....I had my Biopsy done November 13th.....I had already made arrangements for my Husbands Aunt to take me there, and hubby to pick me up....First off I knew the date before I left my DR's office....and time..plus had the orders in hand so I knew what I was suppose to be having done....The day before a nurse from the hospital called me..today me to be at the hospital earlier then what I was told first...okay thats fine....then she told me to go to the second floor (which is the surgery floor) okay no problem there....When Hubby's Aunt got me to the hospital...Lady at the first desk told me to go to the Labs for blood work....okay so there I go....now mind you I woke up with a migraine, still had it, nothing to eat....now this Lady in the Labs tells me she doesn't have any orders for me to have Labs done.....
HUMMMM I was beginning to think did I wake up on the wrong day??? I know just the wrong hour.....so I go back to first desk....now I am being sent to another desk where this elderly guy was..he tells me to sign my name in and have a sit....okay now in 10 minutes I am suppose to be having this biopsy....now migraine in beaming big time....I sit there and sit there....finally Hubby's Aunt go to this guy and says to him...nicely "she has to have the biopsy at 1:00pm..
Oh boy now things are running in high gear.....now this other Lady calls me back into this little cubicle okay time to fill out paper work, so they thought ...until they realized...I was already preadmitted......but they had the wrong thing down on what was going to happen.....they said I was having the biopsy done with Ultra sound......WOW now wait a minute.....I am doing what????? I told they Lady not according to what I was told and what is on this paper...it is a CT scan Biopsy......
Ok now we have that settled...on our way we go....nothing like going from one end of hospital to the other.....finally I am there...A nurse comes talk to me..now she has me go wait in small waiting room....5 minutes later she is coming to ask me about blood work....What blood work...Dr didn't order any.....mind you Migraine still hanging in there but stronger.....
She goes and does something and comes back, she asks me if I want to go ahead and do the biopsy that day or come back....I said I am here let's get it done.....ok so back to Labs we go.....back to other side of hospital again.....good thing Hubby was driving the wheel chair....
Get into the Labs...the Lady drops doing whatever she was doing with this lady and send me right into the lad area...ok now roll up the selves time to get gabbed with a needle......oh yeah can't forget time test...on how fast your blood clots....done good on that 4 minutes.....now back to other side of hospital..ok we are rolling now..not only in the wheel chair...but getting a gown on too..LOL nurse is hooking me up to blood pressure cuff, and hooks up an IV, I had to have a dye to do my biopsy cause of an hernia surgery done 10 weeks before this......
Oh I was wish this migraine would have gone away....ok now into this cold room, upon this machine, put my head into this little area...not good for the migraine....nurse gives me some valium IV didn't touch the migraine but relaxed some of the rest of me.....then I turn my head to the right, I saw this guy coming in..I asked the Nurse is that him???? Then he came in the room and asked what??? Nurse told him I ask if he was the DR. He said yes he was the means...I told him oh no he couldn't I know other proably meaner...LOL
Then in the little open tub I go....all the time they are talking to me telling me to breath , not to breath....then shortly I come out of the open tub and Dr. comes out and numbs area and from there on I felt nothing of the biopsy, not evening hours later or even days afterwards. I spent 4 hours laying on my left side in the hospital..couldn't get up to use bathroom, they didn't want any bleeding at all..I had very little bleeding so after 4 hours I was sent home.....I would say all in all it went real well....Just one advice DON'T GO WITH A MIGRAINE..
Judy

Below our members share their biopsy experiences:

Ice

Well folks,

After all the poking and nerve prodding, I finally got my reults back from my bx, and hopefully I can get a response from you all cause I depend on as well as repect your opinions.
Here goes: Grade 2 Stage 2 with inflammation.
No cirrhosis w/ mild fibrosis and
a little fat in the liver. Chronic
hep c of course, and the fat, well that
goes with the belly i presume.

The Gastro is going to have me take an MRI to figure out the spot on my liver that the other Doc could not get to, and after that I guess I can start my tx. I hope this is all a good thing, I know it is in the middle , I reckon, atleast that is what he told me, but that is my doc, what is your opinion?

I look forward to any responses I can get.

Thanks all,

Ickabok

Donnie

Hi All -

First off, I WAS Mature_Gal and have changed my ID a couple of times. Don't ask me why cause I really don't know.

Second, I want to thank the folks on this forum for all of the information I have gleaned here, particularly Faith and StepFinder, who have posted articles and experiences that helped me immensely.

On 02-Feb-2005, my team in Houston did what good Hep C teams do and I now know that I am a genotype 2b and have a relatively low viral load of 1,160,000. On 14-Mar-2005, two of my team performed a biopsy and the results are as follows:

Inflamation = Grade 2
Fibrosis = Stage 1

My next appointment with the team is 06-Apr, to discuss treatment "options", however, the head of the team has already advised no treatment if the disease is in the first stages. He bases his advisement on the facts that the infection is very old - 40 years - and has only progressed this far, that I've lived a healthy life style all my adult life, that I have a history of clinical depression (with no meds), and he thinks I have lots of time to wait for a better treatment.

He also told me during the prepping for the biopsy procedure that I looked a lot younger than my age. That may account for my refusing a sedative - SMILE. The shots to deaden the area were a little painful, but not that bad and the actual procedure was easy. He showed me the tissue and it looked just like a little bitty red and pink worm.

The bad part was having to lay on my right side, on top of a wadded up towel for two hours afterward. After thirty minutes of what I considered torture, my daughter requested something for my pain. I was given a sedative only and all it did was make my cussing slurred. My daughter then requested a strong pain killer and I was given Demerol(sp?). From then on, I was a happy camper, entertaining my daughter and son with my fantastic ramblings of the three of us doing construction work on my house.

The attending nurse released me after three hours and forty minutes and I walked out on my own with my grown children close by. They took me the sixty five miles home and cared for me that day and the next.

So - - one day at a time, still, and I'm just fine with that.

I. AM. SO. FORTUNATE.

Thanks to all of you again!

Donnie

New and Scared

To all of my friends at Janis and Friends. Thank you for the support leading up to the biopsy today. I am a little loopy still so please excuse and spelling. Well it wasnt too bad I guess. I was just really scared. They gave me a consious sedation, that helped, but they must have been short on lanacane cause if I was suppose to be numb, they could have used some more. I really felt it, it was hard to breath. I had to have a quick scan after they put the needle in and I really thought I wouldn't be able to get a breath. Is that normal? So because I really hurt, it worried me that maybe there is more damage to my liver than I thought. Can that be? Or do you think I should have just been numbed more? As soon as they took the needle out I felt fine. Before they did it they said they would take 3 samples. Is that normal? Well I survived. They gave me perkaset after ward, but no meal!!! I was looking forward to lunch. Crackers is all I got. Well thanks again, one more thing- to all of you men who have a spouse or girlfried who says they dont want you to go, that they will be fine, go, she really wants you to, I learned that today, after my husband dropped me off. Well right now I am nautious, I guess from all the drugs on an empty stomach. Well I am ready for the next step. Talk to you soon, new.

newandscared

Macky

Hi all. I was in the chat room last night freaking about having my liver biopsy today. Thanks to all who were in chat at the time for your calming influence. It went very smoothly. They gave me a cocktail of medication intravenously and I didn't feel a THING. I mean nothing. Everyone involved in the procedure was very nice and friendly which helped too. I stayed in the recovery room all afternoon but slept most of the time. I'm to keep low for the next twenty four hours so am looking forward to some major couch lounging

Macky

Reezy

Hi Everyone,

I had my 2nd liver biopsy done last week, just got results today. They say there is no fibrosis, scarring, fatty liver, only very mild inflammation (5 on a scale of 12, whatever that means), normal enzyme levels, and my liver looks good. Still a stage 0. I'm a 1a, diagnosed in '93, high viral load of 10mm, no symptoms, had first bx 5 years ago (vl was 7mm then), feel pretty much the same now as I did then. I was ready to treat then, my doc talked me out of it, said I could afford to wait. Was ready to treat now this time, again they said I could afford to wait as I have no liver damage, and am still "young" HA! (I'm 52). While that is good news, it's really a roller coaster ride, deciding to treat, then not having to, so keep putting off. Keep thinking "if I treated 5 years ago, maybe I'd be done with this" Then, the flip side is if I wait maybe there will be better (easier) drugs in a couple of years. Who knows the right answer? Anyway, thanks for all the good info everyone posts here. I really have to say getting the biopsy did buy me some peace of mind for awhile, at least it lets me know I'm still doing ok. Thanks, I don't post much, but y'all keep me sane!

Reezy

Florika

My dear friends, thank you all for your wonderful support. And as I said before it's a blessing to have you all on my side, understanding and sharing. As promised, I keep you updated on my tests. I had biopsy done yesterday. It wasn't a very pleasant procedure, but for a good cause. If need be, I would go through that hundred more times. It's very quick. I'm still a bit crooked and can't take a deep breath well, have slight discomfort, but rather than that everything's OK. Now waiting for the results. That's another little step. And I pray for minimal damage found. It'll be hard to find out the truth.
God Bless You All.

Florika

Previous and latest biopsies compared

PK biospy story

The year was 1971. I had traveled to the mainland from Hawai'i to see some old friends in the desert of California and hang a bit. I came down with HBV during my visit.

I laid low for two weeks per the doc's orders there after the infection was discovered. Funny thing was ,I felt great and wanted just to get back home. Finally, I convinced them to grant me my freedom.

Well, I didn't take it as easy as I was told to and should have and I had a relapse.

I was then hospitalized in a very large pink hospital in Hawai'i , perched halfway up a lush, verdant, green ridge with a view to the horizon. This is Tripler Army General Hospital. Very large. And very pink. But what a view.

Now my instructions once again were to do absolutely nothing except rest, rest, rest, and eat whenever I felt hungry. Food was kept handy in small pantries and refrigerators for everyone. When the hunger hits sometimes you gotta move quick to get a bite in before you feel nauseous again.

I was in a about a week and felt some improvement day by day. My eyes never got jaundiced like most of the people on that floor did. I just had fatigue and nausea

About the 10^th night that I was there I was laying in my bed around 9:00 pm,and I heard the marching of heavy boots traveling in a group coming down an adjacent hallway. As the men reached the entryway for my room they came straight in. After confirmation of ID they informed me I was going to have a biopsy

I had no idea what a biopsy was, how the procedure was administered, what was the purpose, nothing. All I was aware of at this point was the two medics and one doctor had assumed positions around my bed. The doctor commenced to assemble a needle onto a syringe that was as thick a an ink refill and nothing less than 6 inches in length. The syringe was at least 4' in diameter and 6-7' inches long. The plunger for the large syringe had a special “hitting plate” on the end of the plunger to facilitate the entry and passage through the rib cartilage as well as the Glisson's capsule. The spacing of the medics became clear as they commenced to constrain me as I lay there. This entire procedure was done without any type of pain meds ,whatsoever. No Versed, nada. The doc with the needle rubbed my whole right side with iodine. Then came the unguided, 2 foot long needle and plunger , right between my ribs. When the needle felt stiff resistance, it was merely “punched” through the cartilage between the ribs. Just when I thought it could not hurt worse, the doc used the plunger end to punch the needle through the capsule around the liver, too. I almost passed out. They were unsuccessful in obtaing a sample that night and I had to repeat the same procedure the next evening.

My next biopsy was almost 30 years later in Jan '00, and it was a relative walk in the park.

Hello to ALL of My People Here:
It has been a long, tiring day of Liver biopsy procedures (2 specimens had to be drawn, but my Medical Director ordered an urgent/stat for the pathological finding. I walked out of the hospital knowing that my Ishak Grade Level is a 1 (down from a 2), and the Staging Level is a 2 (up from a 1). In other words, the findings show that inflammation and necrotic activity have decreased, and the fibrotic activity is still in mild range but up one level (This could simply mean that I was between a 1 and 2 at the pre-treatment biopsy).

Although my Transplant Hepatologist told me that it usually takes about a year to see improvement- if any- from HCV treatment regarding the histological changes to the Liver via biopsy (This was before he performed this biopsy), something (or Someone) is leading me to believe that the grading is an optimistic sign at this point.

The grading clearly indicates that the inflammation and necrosis have slowed down at this time.

I'm not self-deceptive- just optimistic and positive about all of this Journey.

I'll get into more about this tomorrow. You deserved to know the initial basics of what took place Today.

Now- It is time to get some rest and strengthen the Gratitude for being Alive Today.

My Love to You, Joel

Another one of our members Christine, has just received her biopsy results

They were given five years apart. She has been treated twice. once for 24 weeks, and relapsed. A second time for 2 wks, had to be taken off of treatment

She received the same results......did not progress in five years.

She remains Stage one and Grade One

Travel Advice while on Treatment (via Air)

I hadn't seen anything posted on this subject -- experiences/tips about airplane travel while on tx -- so thought I'd share my Thanksgiving week experience, in case it helps anyone else. I'm also flying again at New Year's, so I'd sure like to hear any additional ideas.

This past week I traveled from Wyoming to/from Kansas City, transferring in Denver. Total of about 5 hours from start to destination, each way, counting the layover. It was my first trip since going on tx, and I have very little stamina on tx, so I really tried to plan ahead to make the trip as easy as possible.

1. I planned the trip for my best days of the week, and so that I'd be back home about 12 hours before weekly injection time. That was cutting it a bit close, but I didn't want a short visit either. At the same time, it's winter and I knew I could get stranded, so I took a PEG-Intron package with me. As we're always told with critical medicine, I carried the PEG and Rebetol as carry-on, not in my checked luggage. (If I'm remembering correctly, those of you on Pegasys have to keep yours refrigerated -- in that case, I guess you need an insulated bag of some sort to carry the medicine.)

2. With heightened airport security, even more so now that the federal employees took over a week or two ago, I called ahead to find out if I needed documentation for carrying syringes and needles. I got different answers on that -- United Airlines said there just needs to be a clear prescription label with the medicine (my PEG boxes have prescription labels) -- but the regional airline in Wyoming said I needed a letter from my doctor. Maybe the prescription label would have been enough, but I went ahead and got the letter...handed it to the security person as my carry-on bag went through the screening machine (so I don't know if they would have asked for the letter or not). The only awkwardness was that the security person said, "Is this for insulin?" I don't know why that mattered and I wasn't prepared for an answer, so ended up mumbling "no, it's for hepatitis." (I'll have a better answer next time -- reminded me of Patty's story about paramedics calling out "she's got hepatitis!" when she broke her leg(?) at an airport.)

3. I carried bottled water (it's hard to drink enough even when I'm NOT traveling for five hours), but then ended up not drinking before or during the travel. Just didn't want to have all my normal trips to the bathroom.
Coincidentally the same week there was a TV report about finding an unusual amount of bacteria in the water served on airplanes -- because the holding tanks have bacteria. The report also said that sometimes the flight attendants run out of bottled water, so if more passengers order bottled water the attendants just fill empty bottles with the regular drinking water. (That made me mad!) Bottom line -- if you plan to drink on the airplane, carry your own bottled water or order something else to drink.

4. My smartest move was ordering a wheelchair for the transfer in Denver (from the end of one long terminal to the end of another long terminal, with an underground train inbetween). I've never done that and I had to get over feeling a bit guilty about it, but the wheelchair ride made the dreaded transfer a breeze. Otherwise I would have been sitting down to catch my breath as I passed each and every gate, and it would have taken me forever to get where I was going.

-----

If you have any other tips, let me know. My next trip (again through Denver) is to Chicago O'Hare ... so I'm working up to the "big time, and will need a wheelchair in both Denver and Chicago.

Janet

P.S. I had no idea how much to tip the person who pushed the wheelchair. Any of you know the going rate?

Self-Advocacy Planning
Diagnosed with Hepatitis C

It is a very frightening thing to be diagnosed with any chronic health problem. There are so many questions to ask and so many things to find out about the status of your health from your physician. With a hepatitis C diagnosis, you will have the time to think through many of your fears, and you will have the time to develop a good health plan – we call it Self-Advocacy!

Hepatitis C is a very slow, progressive liver disease. It is caused by a virus that entered your blood stream and attacked the liver. This attack causes liver cells to become injured and actually die. More cell death and inflammation from the virus in the liver causes a scarring process called fibrosis, and if left to advance, many people may develop cirrhosis of the liver.

Lifestyle changes will be extremely important in your quest to maintain a good, healthy, and functioning liver. Eliminate all alcoholic beverages! If you have a drinking problem, seek appropriate help. This will be the best thing you can do for your health.

The following is a sample Self-Advocacy Health Plan. You can add to it at any time. Knowledge is power. Knowing all that you can about your liver disease and your health, will help put your mind at ease so that you can go on with your life in an emotionally healthy manner.

After receiving your diagnosis by letter or by telephone, you may have asked someone questions about hepatitis C. In fact, you might not have ever heard of the disease, or have a vague recollection of its name from someone you may know. You will probably be worried at first. Try to maintain an organized focus on what you are about to plan for your health. As a warning, limit the number of people you tell about your diagnosis for two reasons – You may need a confirmatory test to see if you are infected with the virus; there is a lot of stigma associated with viral hepatitis. At this juncture, you are not informed enough to defend yourself due to lack of specific education on transmission. There will be people or groups that you will never tell about your diagnosis. This is okay – remember, you are not your disease!
Make an appointment with a liver specialist, called a gastroenterologist. If you are in an insurance plan called an HMO, you now have the right under California law to request and obtain a referral to one of these specialists. If you can, interview the office by telephone to assure you that the physician has experience in managing patients with hepatitis C. Sometimes you may have to wait several weeks to get in for your appointment. Try not to panic. Hepatitis C is a very slow disease. Use this time to start your education process so that you can be better prepared when you first visit with the specialist.
Identify qualified resources so that you can start receiving materials about hepatitis C. A resource and books to read lists are attached to this Self-Advocacy Plan. This will get you started. The internet is a great source of information. Watch dates on printed materials to make certain that you have current information. Avoid active areas that make you feel bad emotionally or are frightening in any way. Call the Hepatitis Foundation International and ask to be placed on their PATS list. This will give you a list of people in your area who have hepatitis C and welcome telephone contact from someone else also infected. This is a good way to get support from the privacy of your home. Also ask the Foundation for a list of support groups in your area. You may not be ready to jump in yet – but be prepared. You never know when that list will come in handy at the last moment.
While you are waiting to see the specialist, contact any other physicians that you have seen who would have pertinent health records about you. A copy of these records should be sent to your new physician. Include records from other primary doctors, including any other specialists or psychiatry, including psychologists. A full medical work-up will be in order in the near future. These records will help your new physician get better acquainted with you much faster. Your first appointment will be more valuable to you when both you and your doctor are prepared.
THE BIG DAY HAS ARRIVED! It is often nice to take your partner, spouse, parent, or best friend when attending your appointment. There will be many things covered, such as transmission and prevention. Bring a pencil and paper with all of your questions.
Your new doctor should take a full medical history. Bring any medications with you that you are currently taking, including all over-the-counter medications and supplements. Some medications may be harmful to the liver. Your doctor needs to know all that you are currently taking, or have taken in the recent past year or two. Your doctor will tell you about transmission and risk factors. He/she will ask you directly about any illicit drug use, alcohol use, prescription use, medical illnesses, surgeries, emotional problems, etc. You will be asked about your work exposure and if you have children and are married. So many questions. It is important that you answer all questions accurately, even if the answers are not always comfortable to state.

If you are taking multiple vitamins, unless indicated that you need additional iron, find a supplement that contains no iron. In addition, make certain that the vitamin A you are taking is only a standard dose in a regular vitamin. Mega-vitamins are not needed and some of the vitamins are fat-soluble which means that your liver could have a hard time processing. Listen closely to your doctor about herbal supplements. They may be harmful to the liver, and if not harmful, may give you a false sense that you are getting rid of the disease the “natural” way. It would be wonderful if we had evidence of a natural remedy that could work against the hepatitis C virus. At this point, there are no known remedies that will eliminate the virus.

Your doctor should complete a physical exam. Of particular importance will be an exam of the abdomen around the liver and spleen area. A doctor can tell if the liver is enlarged or is firm. These things are noted on your chart and will be explained to you.

Blood tests will probably be ordered. These tests should include the following: CBC with differential (white cell count, red cell count, hemoglobion, hematocrit, platelet count, neutrophills), Liver Function Tests (total protein, bilirubin, alkaline phosphatase, ALT, AST, TSH (thyroid), alpha feta protein (AFP), Prothrombin time (PT), ANA, PCR. If not run by your primary physician when your hepatitis C blood test was ordered, your new doctor should order a blood test which checks for hepatitis A and hepatitis B antibodies. In addition, an HIV test should be ordered. This would also be a good time for the doctor to order an ultrasound of your liver and spleen. This is a pain-free test, is not invasive, and is performed by a radiology technician. Sometimes this test is substituted for a liver/spleen scan. Either test may be performed later, after laboratory tests are reviewed by you and your doctor.

Make certain that you have all of your initial questions answered before leaving the doctors office. Tell your new doctor that you would like to have copies of all laboratory test results for your personal records at home. He/she will be glad to help you get these copies. When leaving the office, mention to the girl at the front desk that the doctor said that you could have copies of all lab tests. Let her know how you want to receive them – fax or mail. Schedule your follow-up appointment before leaving the office. You will want to see your doctor in person to review all lab results this first time. Establish a good relationship with the nurse and the people running the doctor’s front office. You will be working a lot with them.

Well – how do you feel about that first appointment? Did the doctor answer all of your questions? Was the office clean and organized? Did you feel good about the doctor and his practice? If not, there are many other doctors in your area, to be sure.
Between office visits is a good time to understand and be willing to some of the emotional issues you will go through after having a diagnosis like hepatitis C. This process is called the Grief Process. No one is exempt – everyone goes through it a bit differently and in their own time. You may find that you are sad, depressed, and even angry. These are normal emotions. They should pass in time as you come to some level of acceptance and are able to move forward. Do not hesitate to bring your feelings to the attention of someone who cares about you, and certainly to your doctor. If necessary, reach out for a psychologist who understands what grief is all about. You may find that in the process of dealing with one matter, that other problems or concerns are also handled. Wouldn’t that be great!
Your next appointment with the specialist should be to review all laboratory test results. Have questions prepared ahead of time so that you will be organized and get the most efficient use of the doctor’s time. So discouraging to get home and find out that you forgot to ask one of your most important questions. At this visit, find out what your doctor is recommending for an ongoing health plan. Is treatment being considered? Do you have more serious problems? Do you need a liver transplant evaluation? Will your doctor recommend that you have a liver biopsy? Don’t forget – get a photo copy of all of your laboratory test results.
What is a liver biopsy? Do I really need to have one? Will it hurt? Are there risks involved? What will I learn from having a liver biopsy? Can I just be treated without one? These are just a sample of questions you should have for your doctor if he/she is recommending a liver biopsy. So far, the most accurate way of determining the stage of your liver disease and inflammation of your liver, is by taking a small sample of the liver tissue. This procedure is probably not as important if laboratory tests clearly indicate cirrhosis or advanced cirrhosis. What is difficult for you and your doctor to know in those first decades of disease in the absence of advancing cirrhosis, is how much impact the disease has had on your liver over time. Sometimes the disease is so very mild, even after 20 or more years, that both patient and physician are relieved. In other cases, results prompt more serious inquiries into treatment options. Some people should not have a liver biopsy. For example, if you have a tendency to be a “bleeder” as your doctor would determine by a blood test. Refer to the handout attached for liver biopsy information. When electing to have a liver biopsy, make certain the physician doing the biopsy has adequate experience with the procedure, that a local and conscious sedation are used, and that the physician has used some form of ultrasound prior to the biopsy to rule out any unusual body architecture of the adjacent organs, any unique masses, or blood vessel structures called hemangioma.
Most patients want a liver biopsy. In can help to relieve the anxiety of wondering how the liver is doing after having a virus attacking it for so long. It also helps a patient understand the urgency of treatment if being recommended by a physician. Often times, the results are encouraging and the very news helps a patient finalize today’s health plan. Most physicians feel that a liver biopsy is very important, and although some will treat you with interferon without one, these exceptions are not common. It is your decision. Understand both risks and benefits of the procedure. This is a good time to find a support group so that you can ask others about the biopsy. Recently in one of our groups, we actually did an educational and support segment on liver biopsy. With only one exception, everyone stated that they were glad they had the biopsy done and that the anxiety prior to the biopsy was the painful part!
What if your physician recommends treatment? Your physician should talk to you about all of the interferon therapies available and those that may become available in the future. Sometimes, patients can wait if a better therapy is around the corner. Ask him about all of the side effects, costs, required office visits to monitor your health, and resources available to you both in and out of his office to help you through treatment. Take your time to decide. You will want to read more information, talk to others who have been on treatment, attend a local support group, talk with family members, and determine the best timing for you. We have found that doctors are not real good yet at providing community resources without prompting. Make sure to ask. In addition, prioritize the idea of meeting others who have been treated or are currently on treatment. It is much different to meet people than to read the list of side effects which often sounds very frightening. You may be pleasantly surprised that most people are working and carrying on with what they need to do while on treatment.
What if your physician does not recommend treatment? The first question you need to ask is WHY? Is it because he thinks your disease is too mild, or is it because of another health issue that could worsen if you were treated with interferon , interferon+ribavirin or the new Peg Inron and Pegasys. If you are uncomfortable with any answer, you are encouraged to seek a separate opinion from a qualified liver disease specialist. While it is true that not all people need treatment, at least in the near future perhaps, we must also accept the fact that the disease is progressive for almost everyone at some unknown rate for each of us as individuals.
Accepting your physician with confidence will be important in the long haul ahead. You must fel that he/she is supporting you and your health. You must feel that your doctor is informed. It is also important that your physician understands your need to be on top of things and is receptive to faxing or mailing all of your lab tests to you.
Finally, it is important to remember to take care of your entire body. It is easy to worry only about your liver, however, there are other parts that need regular attention – mammograms for women, prostate exams for men, dental checkups, pap smears, etc. And, you should be vaccinated against hepatitis A and hepatitis B.

This health plan is only a template and is intended only to be a starting point for you to develop a solid plan for yourself. First thing – buy a notebook to keep those lab tests. It is important to be portable. It is important to be able to follow your lab test trends. It is important to feel that you are in charge of your health!

http://www.hepccalifornia.org/healthplanforhepatitiscpatients-selfadvocacyplanning.html

Self-Advocacy Planning
Diagnosed with Hepatitis C

Reviewed and Updated May 01 08

Ten Things To Remember On Treatment

Just remember every journey of a thousand miles begins with one small step.

Treatment, as you will discover, is terrible but still not as bad as you thought it would be.

A dragon slayer never quits, and a quiter cannot be a dragon slayer. (I made this one up).

Its always darkest just before the dawn. (I have no idea what this means, but it sounds good).

My wife says because you are a woman don't worry about being grumpy on tx, everyone will just assume your excercising your womans perogative. (Must be a female thing).

First shots done, no point in crying over spilt INF? (....whatever.....)

Weight gain, what weight gain?

and my personal favorite........

Don't make me go riba on you......knock it off!

I am wishing you well on your journey. Stay in touch.

Dan