Author Topic: Some positive personal stories Please..? + (Read 19286 times)

StillChoppin · « **on:** October 21, 2016, 07:22:48 am »

I had my follow up appt. Wed & my Dr. had all my blood work.
I'm a 42 yrs old white male, good shape, no symptoms,went for routine check up.1 month ago which revealed hep c.
well I was floored when my Dr told me my fibrosure showed .81 /F4 - Geno type 1b
He said in his experience it's probably an estimation on the hi side considering my age, weight, health which are all very good.
he asked me Ifor i was a heavy drinker?
I smiled somewhat because it's quite the opposite I haven't been much of a drinker my entire 42 years. He explained to me that I must have contracted this many years ago for this much damage to be done already. I told him when I was 18 years old and visiting the naval base Great Lakes Chicago I got my first tattoo. I remember beyond the shadow of a doubt that the ink that was used for the person before me was used on me but at that age I didn't think much of it. Fast forward 4 years I had a physical exam and blood work for a Fire Department application which showed my liver enzymes High. Again at that age I was an extremely excellent health and thought nothing of it UNTIL NOW...
He agreed but it was most likely the culprit. Yes I have messed around with drugs and yes I have had unprotected sex but he's very much doubt those were the cause.
I also Googled last night I also Google last night why my hepatitis wasn't found when I join the Marine Corps in 1990, we'll they don't test for it only HIV....
So that answered that question.
I am scheduled to go back on November 2nd to start harvoni. The doctor feels that there will be no problem getting the medication approved given the state I live in in the advanced stages of my fibrosis. I just can't help being filled with anxiety wondering and worrying what if it's not approved, what if I take my 12 weeks and it doesn't work???
I'm going to state the obvious, I don't want to die!!
I'm paranoid, and cannot stop thinking about this entire scenario. What if I don't get approved and I have to fight for several years to get my medication. Will it progress that quickly to where I'm extremely sick? My mind is just racing.
PLEASE I would really like to hear some stories of people in similar situations, that have been where I am & are now healthy.

Thankyou

andrew90 · « **Reply #1 on:** October 21, 2016, 09:40:56 am »

with the score of F4 i agree with your physician you should not have a issue with approval denials only seam for people with f0 - f1

I have prob only been infected for 5 years max (i donated blood in high school and i was not notified at that time so i must have infected after high school

im F2/3 with A2/A3 Inflammation so i have a very aggressive virus and my doctor said i should be fine with approval with these ratings.

Harvoni is great from what my doctor said but sadly i am unable to take as i am Genotype 3A im sure u would beat it! treatment is in the 98% now...

read around the forums it helped me calm down and have a positive future.

gnatcatcher · « **Reply #2 on:** October 21, 2016, 04:53:40 pm »

Okay, StillChoppin, here's my positive story:

The hepatologist and I are as sure as we can be that my HCV came from transfusions. I wasn't even diagnosed until more than 3 decades later. The treatments then had very low cure rates and were contraindicated because of another medical condition I had developed. My liver enzymes kept rising and rising while I waited. By the time Harvoni came along, my pre-treatment Fibroscan showed F4 cirrhosis (although the Fibrosure came in at F2). That F4 got me approved for Harvoni less than two months later, and the 12-week treatment cured me. I had HCV for very nearly 44 years before I got my first UNDETECTED lab result. I'm feeling darned good for a senior citizen. My hepatologist expects me to have a normal life span.

Yes, a very small percentage of people complete treatment with one of these great new DAA (direct acting antiviral) drugs only to have the HCV stick around or come back. If that happens, the person gets tested to see if there was resistance to one of the drugs (treatment always consists of two or more medicines; in Harvoni's case, they're both in 1 pill). Based on the results of that test, a new treatment is chosen.

I hope your reading that someone is fine now who had HCV longer than you've been alive is the kind of assurance you seek. I look forward to the day you can post that you, too, are cured.

Gnatty

P.S. I was very unusual in having a higher Fibroscan result than Fibrosure result. Usually it's the other way around, so your doctor is likely right saying your Fibrosure result is probably on the high side. But it's handy -- it'll help you get fast approval.

StillChoppin · « **Reply #3 on:** October 21, 2016, 05:48:38 pm »

Thanks gnatty I appreciate it..
I tell you, I've been in the marines, I've considered myself a man's man my entire life, I don't spook easily but this scares the shit out of me!
I am thankful my wife pressured me to get a physical.
works been so busy I kept pushing it off.
God knows what would have happened down the road?
I'm glad your well, & I hope to join the likes of you soon!
thank you for your post..

StillChoppin · « **Reply #4 on:** October 21, 2016, 05:50:59 pm »

one other thing, my Dr said i did not need to fast for the Fibrosure test?
I did eat & have coffee prior to my blood work.
do you know if that matters?

gnatcatcher · « **Reply #5 on:** October 21, 2016, 05:59:40 pm »

Yeah, getting a diagnosis of HCV is right up there with a diagnosis of "The Big C" in delivering free enemas

You've got plenty of company.

As for fasting before a FibroSure test, LabCorp says fast for at least 8 hours:
https://www.labcorp.com/wps/portal/!ut/p/c1/04_SB8K8xLLM9MSSzPy8xBz9CP0os_hACzO_QCM_IwMLXyM3AyNjMycDU2dXQwN3M6B8JG55AwMCuv088nNT9SP1o8zjQ11Ngg09LY0N_N2DjQw8g439TfyM_MzMLAz0Q_QjnYCKIvEqKsiNKDfUDVQEAOrk-dE!/dl2/d1/L0lJWm1LYVkhL0lCaEFDRW9BQkFqS0FBUUlLZ0FFQ0thZ0FFQUs2R0RnL1lJNXlsdyEhLzdfVUU0UzFJOTMwT0dTMjBJUzNPNE4yTjY2ODAvdmlld0l0ZW0!/?itemId=407687
I wouldn't worry about it. If your result is artificially high, that means
1) you're healthier than the result says;
2) that high score will help you get approved for treatment.

Lynn K · « **Reply #6 on:** October 22, 2016, 04:04:24 am »

I probably contracted hep c in 1978. Thirty years later in Jan 2008 I was diagnosed with cirrhosis. I learned I had hep c when I donated blood in late 1990 I also had slightly elevated liver enzymes at that time.

I treated with what was available at the time 3 shots a week of interferon monotherapy. No response. I treated again when the came out with the new pegalayed interferon and the new medicine ribavirin. No response my viral load actually increased on treatment. I treated again in a clinical trial with an experimental medicine, pegalayed interferon, and ribavirin. Again no response. Shortly after my 3rd failed treatment while waiting for the newest medicine inciveck to be approved was when I was diagnosed with cirrhosis. I wanted to try inciveck with interferon and ribavirin but my doctor wouldn't let me because he felt it would be too dangerous for me and the odds it would work were about 14%. That was 2008.

In late 2013 sovaldi and olysio were approved. I treated for 12 weeks and was not detected on treatment and at EOT I was elated. Unfortunately, 12 weeks later in Sep 2014 I was found to have relapsed. About a month later it was determined for someone like me with cirrhosis and being a multiple treatment failure that if treating with sovoldi olysio they then recommended 24 weeks.

October 2014 Harvoni was approved. November 2014 I started 24 weeks of treatment to which was later added ribavirin for extra insurance.

I am now 18 months post treatment and I am cured!

If Harvoni can cure me with my history I am willing to bet money Harvoni will cure you believe it!

StillChoppin · « **Reply #7 on:** October 22, 2016, 06:57:20 am »

Thank you much for your response Lynn.
one question I'm sure you have the answer to.
I'm geno type 1 as you are & a lot of others but mine is 1b not 1a.
what does this letter represent?

Lynn K · « **Reply #8 on:** October 22, 2016, 09:34:17 am »

A quasi species.

So like there is the flu right? Which is further broken down bird flu, Hong Kong flu, swine flu, etc...

So kind of like Type A flu and Type B flu two close variants but slightly different

Kind of like that sort of

And I have read 1b has slightly better odds of cure. So even more of a sure bet.

Phoenix17 · « **Reply #9 on:** October 22, 2016, 03:08:05 pm »

Welcome Stillchoppin - I think I contacted Hep C in 1980. Did not have a clue until I went to my doctor for some ankle swelling and pain. This was late July of this year. X-rays indicated no fracture, so she ordered quite a bit of blood tests. I was shocked to say the least that I was positive. Not only that but my VL was Very high at over 22 million. Yikes! I didn't have to wait long to see a hep doc, as my regular doc is friends with him. I got in the next week. He referred me to have a fibroscan done. I am a low F3 and have some fibrosis. I am GT2, so I asked my hep doc to put in a request for Epclusa. He seemed to from think that I would not be approved because of the insurance I have. (Anthem Blue Cross), but he put in for it anyway. I was approved within a few weeks! I was not surprised, : ) I am now on week 6 of Epclusa. I just had my 4 week blood work came back as still detected, but my VL is just 36. Huge difference from 22 million! After 36 years of being sick (and not knowing it) I feel a lot better than I have in a long time! With the new drugs out, treatment is so much easier with minimal side effects. I only had a few slight headaches in the first few weeks. Nothing anymore. I am excited that this virus is almost gone. Yours will be too!

Mugwump · « **Reply #10 on:** October 22, 2016, 04:15:57 pm »

StillChoppin, what can I say? Simple fact is I have beat the disease and I am f4 treatment experienced. I was reaching the point where the disease had taken a toll to the extent that life was starting to become not worth the living.
Hepatic encephalopathy
Was starting to destroy my ability to memorize music, remember what I was doing and generally make me lose awareness to the point where I took myself off the road. I was out of work, finding difficulty walking at times and getting desperate to see an end to the misery of worry and fear that this disease brings.

If you have not yet experienced the debilitating aspects of being cirrhotic then chances are your scan was a little skewed

Which means that getting approval for treatment immediately will not be an issue. My scan was 26 but there is no doubt that I have cirrhosis. Even though we have a different sub class genotype, I am GT1a, there is no difference in how the disease effects the person. My disease remained hidden from the early 1970 or late 60's and slowly ate away at my liver until it started to show signs of iron overload in about 1992 when a doctor doing a locum for my regular doc first suspected that there was something going on other than alcohol consumption. My regular GP had dismissed my elevated liver reading as a simple drinking problem.

Today I am back memorizing very difficult, complex pieces of classical guitar music, am working long shifts, feel useful as a person and most importantly can wade rivers and fly fish again.

All the best sailing though an easy treatment and cure.
Eric

StillChoppin · « **Reply #11 on:** October 23, 2016, 08:22:15 am »

Thanks for all the responces..
Eric your shook me up.
That's amazing. It's a second shot at life.
I know somethings wrong. I don't have symptoms but I'm very aware of my body.
I don't enjoy things like I used to, I have a slight loss of ambition. I thought possibly depression but now I know what it is... Imy loosening muscle mass, I've always been a pretty big muscular guy.. I chalked it up to many hours,at work, not eating a lot, stress & not hitting the gym. NOT!!!

I have soon much to live for & I will do ANYTHING & EVERYTHING to correct this & be myself again so I can be here for my family.
I don't care what it takes..
& my right hand to God, when this is over I will passionately advocate Hepatitis awareness, I will donate & do whatever I can to help others.
I'm a very passionate person & when I saw something I mean it!!
I Thank God my wife dragged me in for a physical or who knows how bad this could have gotten....
I'm literally counting the days until I go back to my Dr. & start my meds.
I have also put a plan in place incase for some reason I'm denied.. I'll sell whatever I own to obtain generics if need be...
Thank you all seriously for taking time to tell me your stories, I have a lot of hope.....

Phoenix17 · « **Reply #12 on:** October 23, 2016, 09:30:12 am »

I agree with you StillChoppin. I think one of the worst things about this is the lack of ambition and just wanting to sleep.
I feel lucky as well. If I didn't go to the doctor for what I thought was a injured ankle, this would still be ravaging my body and mind. I thank God for that as well.
We are in the perfect time to get treated. These newer drugs are amazing! I am sure that you will be approved. I know that it is frustrating to wait.
Keep us updated!

andrew j · « **Reply #13 on:** October 23, 2016, 09:34:36 pm »

The meds are getting easier to access all the time, StillChoppin.
It's much, much easier than it was even a year ago.
... and there are resources here if you happen to run into any difficulties.
You'll be fine!

Philadelphia · « **Reply #14 on:** October 27, 2016, 06:47:57 am »

I've had the virus for close to 30 years. I was 1a. I thought it'd kill me. I'm f4 and was sliding towards decompensated cirrhosis. I was lucky to get early access to treatment here in Australia before most of the population because I was so affected.

Well sort of lucky, I suppose.

I Di 24 weeks of treatment and am excited to say I'm cured. Got the all clear December last year. Best feeling.

I'm back at work full time (I worked part time during treatment) as a school principal, I'm busy and do lots of other things as well as work (I'm on a number of committees, am a national level equestrian jumping judge, love to travel and have just lived through a house renovation).

I appreciate every day I get on this earth and know I am so very lucky.

BillT · « **Reply #15 on:** October 28, 2016, 10:35:07 am »

Hi SC,
Try to slow down a bit and put one foot in front of the other.You've been diagnosed now it's time to get treated.You very probably won't be denied.That being said a few people here have been and were able to fight it.I don't think I've ever heard of anyone that was denied not being treated in the end.If you do need to there's a lot of information here and ways to help you.Try not to worry about the treatment not working until that time comes.I was treated on the interferon and it didn't work so I understand the uncertainty.I had doubts myself but was cured in the end.One thing to remember about Harvoni,and we've had some discussions about why,is that some people have still shown positive at EOT but went on to SVR12.Like I said,put one foot in front of the other,and try not to stress yourself.GL and keep us posted.

StillChoppin · « **Reply #16 on:** October 31, 2016, 08:24:56 am »

Thank you BillT...
I really appreciate you taking your time to try and make me, a stranger feel better. The reassurance from all the people that have been there including yourself does make me feel better. I am scheduled to start treatment on Wednesday and I just cannot wait. Knowing that this is inside my body and wreaking havoc on my system makes me nuts. But I will stay on the Forum and I will keep you posted.When all is said and done I hope I can be on the other side giving reassurance & helping somebody that is in my current position.
Thsnks again, ill stop back in on Wed after i start my meds..

gnatcatcher · « **Reply #17 on:** October 31, 2016, 08:59:37 am »

Quote from: StillChoppin on October 31, 2016, 08:24:56 am

. . . I am scheduled to start treatment on Wednesday and I just cannot wait. . . .

Great attitude! Here's hoping you're in the vast majority who have an easy ride.

Quote from: StillChoppin on October 31, 2016, 08:24:56 am

. . . When all is said and done I hope I can be on the other side giving reassurance & helping somebody that is in my current position. . . .

You won't even have to wait until the end of treatment to give reassurance. People who start treatment at about the same time form a special support group to cheer each other on, so be on the lookout for your cohorts.

Gnatty

BillT · « **Reply #18 on:** October 31, 2016, 09:55:53 am »

You have a few things going for you SC so don't let all of this rattle you too much.For one you're getting the treatment(thats the biggie).You also have 1b which is the easiest one to cure.Then you have all of us,God help you,here to annoy you every step of the way through your treatment...especially Lynn and Gnatty.

As I said don't get discouraged if you still show some VL all through this.Harvoni does that.Drink lots of water.It helps with the side effects.There are a lot of people here that can't help with info on those(see Lynn and Gnatty above

).GL

BillT · « **Reply #19 on:** October 31, 2016, 10:07:31 am »

I forgot to ask.Are they prescribing riba along with the Harvoni?

StillChoppin · « **Reply #20 on:** October 31, 2016, 11:06:09 am »

No, the Dr. did not mention riba.
I do drink ALOT of water already.
Ive always tried to keep healthy.
I eat well, ive NEVER been much of a drinker my entire life
& ive always exercised regularly until about 3 yrs ago due to crazy hours at work, but my job is phyically demanding & i keep track of my daily steps..
Most of the time i go over what its set at.
3.5 miles per day.
Im on the go constantly ..
I deff. will be a regular, now &in the future..
Its amazing how i got caught up in life & never thought anout the what if's until they bite you on your a$$....

andrew j · « **Reply #21 on:** October 31, 2016, 06:59:39 pm »

Man - it's always like that!

... Keeps us honest!!

Hoping your treatment is smooth and uneventful.

Best wishes,
A.

Strike5223 · « **Reply #22 on:** November 01, 2016, 12:21:19 pm »

On my 5th week of Epclusa, GT-3. Don't even know I'm taking anything! - no side effects(maybe a few more naps

Just got 4 week lab tests and the Hep C Virus is UNDETECTABLE already

BillT · « **Reply #23 on:** November 01, 2016, 01:14:22 pm »

That's sweet Strike.Congratulations.

StillChoppin · « **Reply #24 on:** November 01, 2016, 02:30:52 pm »

Congratulations!!
I will pray for your continued success. It must be an amazing feeling knowing that it is no longer taking over your body.

BillT · « **Reply #25 on:** November 02, 2016, 09:39:04 am »

You'll know that feeling soon SC.Keep the faith.

Kanji · « **Reply #26 on:** November 11, 2016, 10:47:31 pm »

What a long strange trip its been . I celebrated my 60th birthday this month. Somewhat monumental to me being I can remember being a young man and thinking there was no way I could live this long. At the urging of a good friend I saw a M.D. for the first time in years in 1995. I thought for sure they would come back with some death sentence I could not deal with...Given the sloppy way I had played with recreational drugs anything was possible.

He called me in to explain that I had contracted Hep C....OK tell me about it.... At the time I felt fine so I opted to pass on the nightmare treatment of the day...I remember talking to the Dr and saying that I was probably better off waiting for a more impacting treatment.

Flash forward 20 years . No recreational drugs , my professional life had become so much more than I ever thought it would be . Then I heard of Harvoni . Saw my Dr. He refered me to a specialist and we were game on . The insurance company that manages my companies self funded insurance policy Decided that since after 60 days I was undetectable , I must be cured. The Specialist wants the treatment for 90 day days and so did I . Could not help but feel good with the undetected results .120 days later reality came crashing down on me with my results coming back positive. I was crushed, I am usually quit resilient to this type of thing but....

I had my wife call the specialists office about the new drug I was waiting on. I was working 12+ hours a day and my mood was not good , my wife told me that I should try back in September . ()&$# hello internet what do you know... Epclusa had FDA aproval on June 28th, My mood was thin on waiting any longer. I went to there office acting like a spoiled brat , we had 4 rounds of layoffs last summer and while I didnt believe it would include me I wanted treatment to start.

At 60 days I tested undetectable again,of course I had danced with that overweight lady once before . this past week I finished 90 days of Epclusa . Today I gave blood again I know what those results are, We will see next May what the good news is.

In conclusion I know that I could not name a side effect of either medication. I had developed type 2 diabetes and it is being pushed back with diet, exercise, and pills. If you can put together some undetectable tests you will experience a wonderful feeling about yourself, Figure out how to put that feeling in a bottle and you will be wealthy beyond all your dreams.

Peace and Good Luck all.

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Author Topic: Some positive personal stories Please..? + (Read 19286 times)