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Post Info TOPIC: Newly Diagnosed
Linuxter


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RE: Newly Diagnosed
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Hi Groupergetter,

I agree, so I'm pretty well armed and ready if they turn me down (even though my doc said she'll put her team on it) . I already found (online) Washington HCA's (Health Care Athority) Hepatitis C treatment policy as well as their Hepatitis C treatment regimens.

I also found a letter from CMS (Center for Medicare/ Medicaid Services ... The Feds) to all states regarding Access to Hepatitis C (HCV) Drugs that could come in handy as well.

With my Liver Fibrosis, Fibrotest-Actitest Panel lab results as well as my high Viral Load results (bumps me from 8 weeks to 12 weeks) I think I'm ready for battle.

My ID (Infectious Disease) Doc said she did have one case where Medicaid tried to deny a patient at F3 saying that they were a low F3 ... the doc fought that and no, no, no you require F3 or F4, this patient is F3 ... she got the meds for her patient (F3 is F3 no matter how they want to look at it). I've only met her once but I have little doubt that she'll work the system and get approval for me.

But I like to be prepared, just in case, so I've been doing my homework. I still need to get copies of a few of the initial lab results from my PCP but that's just a matter of going to her office and asking for them.

Got everything in a file marked "Battle Plan" (not really but I do have a file).

I almost expect them not to roll over right away but being armed and knowing that I qualify (with documentation to prove it) they don't stand a chance ... 'cause I sure as heck am not going to roll over, I'll be on high ground with a clear line of sight.

As for the attitude ... I am trying, I do waver every once and a while and start to worry about "what-if's".

This is a bit of an emotional rollercoaster so far but my wife (of 21 years) helps true the sails when they start to luff.

 

Be Well,

Linuxter

 



__________________

63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 
Groupergetter


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Hi Dave, glad you are doing well and about to get started on tx.  Not sure if you are on "straight Medicaid" or a managed care plan/HMO?  Whichever you are on, I would recommend you research the plan's specific written criteria required for coverage of the meds.  In the event there is a problem with coverage or you get the run around, you will already be aware of the policy.  Depending upon what state you're in, the Agency that oversees the Medicaid program should be able to provide you with this.  If you are in a managed care plan they should have the written policy.  You may be able to find this policy online.  Hoping all goes smoothly for you, but I know from experience that dealing with Medicaid can sometimes be difficult and frustrating.  Hoping SVR is in your future.  Great to see the positive attitude you have towards what you are dealing with.  Take care :)



__________________

1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Linuxter


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Hi wmlj1960,

Thanks for the positive vibes ...

... I do feel fortunate to have access to the new DAA HCV drugs, I know many ahead of me have endured far longer regimens with much worse side effects, I tip my hat to each and every one of you and wish you all well.

Nothing is ever certain in dealing with medical insurance (Medicaid included) so I'm a little afraid to get my hopes too high but worrying about it at this point is well ... pointless.

I'll have to be vigilant at watching my diet and getting enough exercise but I think it will be helpful being able to check in here to stay on track.

Happy Holiday season!

 

Linuxter



__________________

63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 
wmlj1960


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Hello Dave.

 I'm happy to hear you will be starting Sov / Riba soon. This will likely not be as much of a "long road ahead" as you think. 12 weeks is very doable for most. You're certainly on the right track with eliminating alcohol, smoking, sugar, salt and processed foods. Everyone agrees that staying adequately hydrated helps with side effects but I'll go one step further and say that healthy diet and adequate exercise are also essential for a smooth, effective treatment experience. Keep these, and medication schedule compliance as your top priority's and we will likely be having an SVR party for you real soon. Welcome to the forum. smile



__________________

60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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Linuxter


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Hiya Cinnamon Girl,

Thank you, and thanks to each of you for such a warm welcome, you make it easy to feel at home here.

Yup, my liver's going to be happy it's getting "Special Treatment" from here on ... I'm on the road to getting rid of this insidious destructive virus, no alcohol, healthy eating habits and plenty of fresh water and juices ... and (I have to keep reminding my self) ... routine exercise. I've already lost a little weight since I quit drinking. (Was 200+ lbs).

Lifestyle changes are not always easy but getting "shocked back into reality" via this diagnosis, I think, will help me make those changes.

I look forward to meeting you all and getting to know you.

 

Wishing you all well,

Linuxter

 

 



__________________

63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 
Cinnamon Girl


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Hi there, Dave, good to have you with us!

Thanks for introducing yourself, and I`m glad to hear you`ve been prescribed Sovaldi and ribavirin.  You should do very well with this treatment, and most people find that a course of 12 weeks is very doable, with minimal side effects.  Having a fairly advanced fibrosis score certainly does speed up the process of getting onto treatment, and once the virus is gone and you have reached SVR it`s very likely that you`ll gradually see an improvement in fibrosis status as your liver begins the healing process.

You`re right in saying that many people have no idea they are infected with Hep C until they get their diagnosis, and it often comes as quite a shock!  

Good to hear you`re looking after yourself well, wishing you all the best of luck!  smile

 

 

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Linuxter


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Thanks for the welcomes!

I've got a great PCP and the ID Doc is very experienced and treated hundreds so I'm in good hands.

It's also nice to find this place, no doubt I'll be experiencing lots of ups and downs for a while, being able to relate to others will be a big help.

 

Linuxter



__________________

63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 
Groupergetter


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Welcome Linuxter, you've found a great forum with caring and knowledgeable people.  Sometimes Medicaid approval can be difficult.  Hopefully you'll be getting started soon.  Good luck, keep us posted on your progress. 



__________________

1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Matt Chris


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Hello Dave

Welcome to the forum, you have found a good place With people who can give valuable insight about all things HCV.

Sounds like your well on your way and are taking serious your personal health by creating healthy habits. Keep 100% compliant with your Meds and all will go well.

matt 



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Linuxter


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Hi All,

Just diagnosed mid November.

Apparently I've had HCV for over 40 years and didn't know it. (Guess that's actually fairly common).

My PCP picked up on it when she did a blood test showing elevated ALT/ AST

Next was a blood test to check for HCV ... that came back positive.

Next HIV test ... fortunately that was negative.

Doc's seems to think that blood letting is the cure ... they keep draining me every step of the way.

Further testing determined that I'm Genotype 2b with a VL of about 10 million (Ya, seemed high to me too).

 

The other day I went to the Infectious Disease doc (first visit).

Actually a very upbeat visit, the Doc answered any and all questions then she proceeded to reassure me that I came to the right place and that having HCV for this long there would undoubtedly be enough damage to qualify me for treatment.

Another blood letting to determine level of liver damage (FibroSure + Acti).

As I'm leaving the Doc says "Hope you've got stage 3" ... and off I go.

My insurance is Medicaid so I've heard all the horror stories that they'll never approve treatment at the $84 Grand price tag.

Pretty much been worrying about that since I was diagnosed.

Stories are pretty much true in my state unless, the patient (that would be me) happens to have bad enough liver damage (i.e. F3 or F4).

So ... I got my lab test results back yesterday and sure enough ... I've got "Advanced Fibrosis" (... That's the Bad News).

Same message, however, also said that the Doc would order the meds and that I should expect a phone call for delivery in a month or two max.

While I was still at the office the Doc had said that if I'm stage 3 I WILL get the meds, that she has not had any problems as long as that threshold is met. (... That's the Good News).

 

Quit Smoking in January 2015

Quit Drinking as soon as I was diagnosed with HCV

Quit using sugar on/ in anything

Don't use salt on/ in anything and try to avoid as much as I can in any processed foods.

Been drinking lots of lemon water and lots of cranberry juice.

Been going for walks when it's not pouring rain (rains a lot here).

Been eating more healthy foods

 

I'll believe that I'm actually getting the meds when they arrive.

I'm prepared for a long road ahead.

Doc prescribed Sovaldi + Ribavirin for 12 weeks

 

Wish me luck,

Linuxter



__________________

63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 
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