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Hep C Discussion Forum -> New Members Area -> Howdy Howdy. Newbie's Story.
Post Info TOPIC: Howdy Howdy. Newbie's Story.
PeppyHepper


Newbie

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RE: Howdy Howdy. Newbie's Story.
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Yes, SuziQ, I believe there are 30 some odd states that "chose" to not expand Medicaid.

I'm sorry to hear about your daughter. Our governor keeps bragging about our budget surplus, and how Texas was never affected by the economic crisis. While Texas may have received less damage, there was still damage, and now we're facing repercussions. 

Here, unless you're a pregnant woman or already on SS disability, it's nearly impossible to get Medicaid coverage. It's kind of a Catch-22, because it's very difficult to get on disability unless you have enough medical evidence to prove you're disabled. 

Before the ACA, Oklahoma had a pretty decent state run program called SoonerCare. Even though they're not one of the states that expanded coverage, I believe their coverage was relatively decent in the first place.There was a part of me that wanted to move away from my home state, just to get access to decent medical. My partner of three years has decent medical  through work AND Cherokee Nation, but the cost of the former would be too high for us. I did go on the HealthCare.gov website, but the plan that would be most afforable to me would be about the same as my partner's plan.

My current Federal Poverty Level Percentage varies between 91%-131%, depending on the week, which in most states WOULD qualify me for assistance.  Of course, just a few years ago, my federal taxes were MORE than what we gross in a year. 

Sorry to go off on a tangent there, lol. I get kind of riled up on that subject. I do what I can as far as activism, to try to change the laws, but one person can only take it so far. 

 



__________________

Jen / Peppy Hepper

The hepper with a lil' pep in her step. 

HCV 20+ yrs, G2b, TX Intolerant in 2002

Hoping to do Olysio + Solvadi soon.
suziq


Senior Member

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You are the first mention of expanded Medicaid coverage that I have seen.  I just found out about states that have chosen ( by Supreme Court Ruling)not to participate in that coverage.  My daughter lost her job in Louisiana last year and her partner of 18 years last month. I was searching for medical coverage for her. I was shocked at how many states are refusing to cover poor people based on political party. And our governor keeps bragging about his balanced budget. 

SuziQ  



__________________

Geno 1A  Age 82 Treatment naive Cirrhotic Told I had liver disease in 1966. Diagnosed as Hep C 1999.Started Merck clinical trial with Riba on 9/9/2013 Week 1 and 2 <25  Weeks 4, 8, 12,16,18 UND.  EOT Jan 14,2014  EOT +12 UND   JULY 1 2014 EOT+24= SVR
PeppyHepper


Newbie

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Thank you everyone for the warm welcome.

I'm a bit of a rare bird indeed. Physically, emotionally and even spiritually. wink

 

It is possible that I could've acquired HCV through birth. My mom was a Baby Boomer, and it's possible that she was infected and just didn't know it. Unfortunately, she passed away in 1999 from breast cancer.

Still, we're not exactly sure when / where it came from... I only assume around 10-ish because I had a tonsillectomy and adenoidectomy around that time, as well as turning into a banana. 

The last biopsy I had was in 2002, right before the Peg/Ribo TX.

Last week, I went to a support group meeting at my old hepatologist's office. There I discovered the latest and greatest in the world of HCV meds. That's when they had suggested to go onto a Solvadi + Olysio combo for 12 weeks. It was recently FDA approved for my genotype, and it seems to be a good treatment for those with a decompensated liver. 

I live in Texas, which did not expand Medicaid coverage when ACA was put into effect. The $150K cost of the medications would be free to me, as I do qualify for the drug company's  patient assistance programs. The real trouble in my case is getting enough money is to go to all the doc visits w/ labs and whatnot. I'll figure it out, somehow. The Hep Doc I had prior to the economy crashing was one of the best in the state, and I would like to pick back up with him, as he's reasonably priced. The sliding scale clinic I was going referred me to another doc, but he's extremely overpriced. 

 

LTChaos - 

Glad to hear you're doing well on the Sol/Rib TX. If you're starting to fell better already, who cares if it's psychosomatic? Haha. I hope it works well for you. 



-- Edited by PeppyHepper on Wednesday 5th of February 2014 08:59:57 PM

__________________

Jen / Peppy Hepper

The hepper with a lil' pep in her step. 

HCV 20+ yrs, G2b, TX Intolerant in 2002

Hoping to do Olysio + Solvadi soon.
mallani


Guru

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Hi Jen,

Welcome to the Forum. Yours is a strange story- for a young Geno 2 female to progress to cirrhosis is very rare. Have you had liver biopsies?

In 2005, Viral Load tests were not as reliable as they are today, but even so, the Undetected is most unusual.

You need treatment, and the Sovaldi/ Ribavirin combo has given excellent results for Geno 2. Surely your doctor can get you onto this regime. Good luck. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Loopy Lisa


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Although I detect not an ounce of self-pity, I just wanted to give you a cyber hug. It saddens me deeply that someone so young has to face such issues. I hope that you can treat on the new drugs ASAP and reclaim your health. I look forward to reading your treatment success in the future!



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Tig


Admin

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Hi Jenifer,

Welcome to the forum! I'm so happy to have you here with us. You've found your way to the most supportive forum available. It has provided me with so much help and information I wouldn't know where to start to tell you all of it!

Thank you for your detailed bio. It helps us to know what your tests and history are. With that info we can provide better informed opinions. I'm sorry to hear about the rapid progression of your disease. That has to be one of the quickest escalations of this I've heard of. The good news is you've discovered the problem and treatment options have never been better. You also have one of the easiest genotypes to treat. The new medications offer very high success rates. You may be required to do 24 weeks of treatment due to the cirrhosis but the rates of success make it worth the effort! As the others mentioned, there are programs available to assist you financially. Aside from Medicaid and local agencies in your area, the drug manufacturers offer some excellent financial assistance programs. Gilead's program will provide zero copay assistance if you meet their income guidelines and I think you have a good chance of meeting that according to your bio. We can provide you with all that information and look forward to helping you beat this disease! We're here for you and I look forward to getting to know you better. Keep your chin up. I really admire your positive and upbeat attitude! That is one of the best things anyone can have in or out of treatment.

I love your self portrait. It tells me a lot about you. We have a member, Jill ( Cinnamon Girl) that is an artist too. She is very knowledgeable and I know you'll have a nice chat once you meet her. So stick around and make yourself at home! Talk to you soon!!

Best, Tig



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
LTChaos


Veteran Member

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Hi Jen, & Welcome!    I am another GT2, and just started treatment.  If you can find a way to get  Riba & Sovaldi, you are almost certain to beat this thing.   Can you get Medicaid where you live?  If you can get the prescriptions, there are programs to get the meds at almost no cost. 

I am on day 3 of treatment, and actually feel better today.  It is probably psychosomatic, but I cant help but feel a little excited that the drugs are working :) even though I know it is probably in my head...

 

 



__________________

GT 2  VL on 10/23/13 7.2 Million; AST 55;ALT 79;AFP 3.2; Started 12 weeks Riba/Sovaldi 2/2/14 - Results Undetectable at 12 weeks!  
Enavigo3891


Senior Member

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Welcome Jen...

Based on you turning 17 in 2000, you and I were born the same year and I am also genotype 2. I am sorry to hear about the troubles you have gone through thus far. I do know what you mean about finding people the same age who can relate however the truth is, we are a rarity when it comes to this beast. I am not sure if your HE would prevent you from using the newest treatment but you may want to consider speaking to the doctor at the clinic about the newest combo available, Sovaldi and Ribavirin. It's supposedly has a 90% SVR rate in us GT 2's and it's all pills, no injections. There is a hefty price tag on it, $84,000 for the 12 weeks treatment of Sovaldi however the makers of the drug, Gilead are doing great things with payment assistance and such. The Ribavirin is much less expensive, I think I saw it was about $600 retail for 12 weeks an I do believe there are payment assistance plans for that too. 

I will begin that treatment regimen next week and some here have already begun. However it plays out for you, I think you will find that there are numerous people on this thread with a wealth of beneficial knowledge and who are super supportive (regardless of their age).  Poke around some, jump right in - people will answer questions. At the end of the day, we're all in this together.



__________________

Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 
PeppyHepper


Newbie

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Hello everyone! 

New to this forum, although not necessary to HCV. 

Original DX was in October 2000. I had just turned 17 years old the month before, although I probably had the virus for at least 5-7 years prior, if not more. Still not completely sure of how it was acquired though, but I can recall being jaundiced at age ten. 

Genotype 2B. Grade 2 Fibrosis. 

During that time, my ASTs & ALTs were extremely elevated (in the 300s to 500s, respectively), and they stayed that way for several years. Fortunately, I never developed a taste for alcohol, lol. 

Attempted Pegasys + Ribavirin Combo in 2002. Couldn't complete it, due to anemia, depression / suicidal ideation side effects. After failed TX, I took a "wait and see" approach, with continuous monitoring / labs. 

In late '05, I went in for my routine tests. Enzymes were normal, AND there was ZERO detectable virus in my blood. The doc at the time called it "spontaneous remission". I didn't care what he called it, I was happy. However, in 2007, it returned, much to my dismay.

I was still in "wait" mode, because the antivirals were just on the precipice of being released to the public. Not being able to complete the treatment the first time around, combined with my genotype, made it difficult for me to get into clinical trials. 

Unfortunately, when the economy crashed, I lost my high paying job in 2011, effectively losing access to decent medical care. I've had a few jobs since, but none provided medical insurance. I do get the most basic care at a low cost clinic. It's not much, but it's something, especially since work has been kind of difficult for me as of late. I've been trying to do some work as a freelance artist as of late. Anything to try and keep me busy, as long as my body cooperates. (Attached is a part of a self portrait I did about five months ago or so.) 

About eight or nine months ago, I started having a large array of symptoms. Ascites / full body edema. Loss of motor function in hands. Neuropathy in my left foot (not diabetes). And most disturbingly, I was getting very disoriented & profoundly confused. After getting some tests at the basic clinic, they determined that I'm now cirrhotic and have hepatic encephalopathy (HE). Viral load was around 10.5 mil. They gave the the Lactulose Rx, but I can't really afford the Xifaxan. Unfortunately, the clinic won't do much more than that. At least it's something.

Joined this group for support. smile I have been attending a local support group in person, but it's pretty small, with only three other members, and I am by far the youngest. 

 

 

 



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__________________

Jen / Peppy Hepper

The hepper with a lil' pep in her step. 

HCV 20+ yrs, G2b, TX Intolerant in 2002

Hoping to do Olysio + Solvadi soon.
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