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Avatar universal

hep-c and liver cirrhosos (chronic)

I was diagnosed with both chronic hep-c and liver cirrhosis 2 months ago ! I was given a referral to a gasterologist  that absolutely refused to see me without insurance along with many other Doctors...Same answer ..no insurance, no appts. I have filed S.S.I. 2 years ago , I went to my hearing in January 2015 ...the decision is completely in the Judge's hands now ! My problem is this, When and if I'm approved for S.S.I. benefits it will also include Medicaid insurance...so the Department of Family & Children services will not let me have Medicaid (not even temporary Medicaid ) until the Judge makes his decision which could take 60 to 180 days ? I don't know how far along (stage) Meld score....nothing, no one has told me anything ...I've stopped drinking alcohol and smoking...cold turkey on both as soon as I heard my diagnosis ! Does Anyone have any answers or options I may be able to do without insurance...Obama care is out until March 15th..Clinics have no Gaster. or hepotologist Dr.'s on board ..just referrals to Dr.s that will not see you without insurance ?
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Avatar universal
I am glad you have found someone in the medical field to advocate for you!  That is good, as she will know how to express the information in the proper medical terms, which helps.  I am sorry to hear GRE Medical Center will only take you w/Medicaid.

i remember you saying that you could not get temporary Medicaid because of you pending SSI.  How is that claim progressing?

Of course, I believe you said you would be eligible for Ins around March 15th.  Have you already applied?

676 is NOT a high viral load at all!  Mine was 813,096 and was considered fairly low.  People have viral loads into the millions.  That, basically, tell you two things:
     1.  That you have hep c (no viral load, no hepc).
and, when you finally get on treatment,
     2.  Whether or not the meds are working (when they are working, your viral load comes down and ultimately, becomes Undetected).

As Lynn stated above, she has had this virus since 1979.  She is cirrhotic and still doing well on treatment.

  I had it since 1974, wasn't diagnosed until 1994 and failed my treatment then.  Didn't retreat until June - December of last year (2014).  Just got my EOT Week12 Labs and I am now SVR12.  Thatall means that I got my Lab results for the blood draw done 12 weeks adpfrer I took my last pills, and my viral load came back <15 Undetected, so, since I have been off the meds 12 weeks and still am undetected that is called Sustained Viral Response.

My point here, is there is no need to panic.  You have the time to wait until your SSI and Medicaid come through, or until you can get on Obama care.  Like Lynn, I really don't know much about that Ins but I believe I read on one of the threads here, that cost is on a sliding scale so that everyone can get covered, low or no income people with no payments.  As I said, I don't know how it works, but it is certainly worth you looking into.  I believe you can even do it on line.  Wish I could tell you how, but I really don't know.  You might just need to type, in the browser bar,O'bama health Care, or something like that to pull it up.  The local librRy might have information on how to find the site.

Goodness, I have written a book, again.  Sorry.  I need to get back to tax stuff (ugh) and it is getting late.

You also have a good night and a good weekend.  

Pat
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Avatar universal
Hi Pat, Thank you for all the information....I'm finally relieved for now ! I have a very nice nurse who works for the 1st G.I. I saw who turned me away because of insurance issues.....Anyway this nurse on her own time is trying to find a G.I. Doctor for me....She called me today after work and said Augusta Ga.Medical hospital will except me but....got to have Medicaid ....so another brick wall. I'm getting used to it ! She also said she sent a referral to my provider that is requesting a Genotype test for me...so I don't know if he will do it or not...time will tell ? Viral load is 676...hopefully that is not bad ? Have a nice night and Thank you for everything ! If you happen to find anything else please let me know ..your information is well  worth waiting for...G-Nite
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Avatar universal
Hi, Ras:  High enzymes just means that your liver function scores are above the 'normal' range.  Those are the AST and ALT ans a couple of others I will have to look up.

The The ALT & AST are measures of inflammation in the body. When you have hepc, the can become elevated, but do not do so in everybody, or the rise is still within the normal range so not noted.

The Hemoglobin indicates whether or not you anemic.  Yours looks good, as it it in the normal range.

The AFP is a ttest for tumor markers, and unless, you are fibrotic, or cirrhotic, the Dr probably wouldn't do one.

In the beginning, after I was diagnosed and treated the first time, without siccess, my Dr only folowed me every 6 mo to a year, and I had had hepc for twenty years by that time.. I say this to show you that it is a slow developing disease, so relax until you get your Ins and see a specialist.  It sounds like you have a caring, thorough PCP, who is taking th right steps.

Feeling fine is nothing to worry about, it is typical of what most of us feel for many many years.  That just reinforces what I said about having time to get your ducks in a row.

Also, if you don't get the insurance, appeal the decision.  With two denials, you should be able to get help from Gilead themselves, as flyinlynn said above, at        http://www.mysupportpath.com    

Oh, the other numbers you mentioned, I will have to look up and get back to you on.

Hang in there, keep breething, and relax!  You areon your way!

Pat
Helpful - 0
Avatar universal
I got some of the Lab results back today...( Hi Pat ) sorry....it seems my MELD score dropped from 14 to 12 .....He also said he didn't need to see me for 3 months...But bare-in mind he is not a specialist...so I'm still waiting to see a G.I. Doctor but still cant until I try to get Obama care ins. on the 15th of this month ? Let us Pray that comes through or who knows what I'll do next ? Lab results as follows AST(.SGOT) [H] 76 IU/L ..ALT (SGPT) [H] 66IU/L...HEMOGLOBIN 13.1 g/dl ...Well it looks like he ordered the rest....Im lost again ...he also mentioned my enzymes are slightly high....other wise I feel fine...which really worries me ? Enzymes high means ......?
Helpful - 0
683231 tn?1467323017
Hepatic is from the medical term for liver from the ancient Greek hepar so hepatitis means inflammation of the liver

In medicine, a coma is a state of unconsciousness lasting more than six hours.

Hepatic coma relates to a possible result of severe hepatic encephalopathy resulting in loss of consciousness and lapse into a coma.

So basically "Unspecified Viral Hepatitis C without hepatic coma" means Unspecified Viral Hepatitis C without a loss of consciousness and lapse into a coma due to liver disease.

They are just describing your condition in medical terms.
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Avatar universal
March 10th whoops !
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Avatar universal
Hi Pat, I found some of the results you mentioned....These are from my 2nd blood test at clinic, 3rd is pending....AST/ 259 H....ALT/ 70 H...AFP ?..could not find that one ? Hepatitis C  (<15) Iu/ml  but also has Log(<1.18) next to it ...Unspecified Viral Hepatitis C without hepatic coma ? Other readings INR /1.4...Creatinine /1.10 ...Bilirubin /2.2  and also Hemoglobin /14.1 . That's all I see until 3rd test results ! The next are due on March 9th....Thank you and everyone for there concern ,it really helps !
Helpful - 0
Avatar universal
If you will list the Lab abbreviations - and numbers, maybe we can help you with understanding them.  I think the most important are the AST, ALT, Hemoglobin, AFP, if they did one, both numbers listed for the HCV RNA, PCR, Quant (if they listed it both ways), and Fibrosis Score, if they listed one.

Others may suggest tests that they believe help understand this disease.

As for Milk Thistle - I really don't have an opinion on it, either way, BEFORE you start treatment.  I haven't used it but I believe I remember people posting that they did.  For that, read the older posts.  There are pages of posts with some really interesting information.

Sorry I can't help with that.  No matter the stand on using Milk Thistle or not, everyone advocates the hydration and eating healthy as an excellent means of helping you liver.

Now, once you BEGIN TREATMENT DO NOT USE MILK THISTLE.  Let me repeat that.  Once you are on threatment, DO NOT TAKE Milk Thistle!  

Actually, once on treatment, do not take any supplements at all OTHER THAN WHAT YOUR HEPA DR PRESCRIBES FOR YOU and what, of your other prescription medications, if any, that s/he has approved.

For other prescription medications, make sure you take a list, including strength and how frequently you must take it, to your Hepa so he or she knows exactly what you are on.  Supplements, vitamins and prescription medications can all interact with the hep meds, blocking the, etc.  The Dr can adjust, or suggest to your PCP what might do the same job, but not interfere with your hep meds.  

ALL:  Does someone have more information on CTScan liver results translation?  I only had biopsies, so far, so haven't learned how to interpret the results.
Thanks!  Pat
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Avatar universal
CT scan when I was admitted in hospital is where I found out about cirrhosis and hep-c ....I had 2 sets of blood test taken , they were 20.00 at clinic including visit...I do see INR, Bilirubin ,& Creatinine , I see the numbers but have no idea how to read any of it ? or what numbers are the results of anything...the viral load was on the front page...Hep-C viral load 676 ....My Doctor at the hospital said I have had the virus a while but did not elaborate...10 second visit everytime he saw me ...then gone !!! Had no chance to ask any questions ! What is your thoughts on Milk Thistle even if I took it until I can see a specialist ?
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Avatar universal
Lynn:  

Thanks for posting that web address to the viral load info.  I copies it this time to my web addresses list. : -)

Pat
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Avatar universal
FORGOT TO ADDRESS THE CIRRHOSIS:  How did they diagnose that?  Did you have a biopsy?  A Fibroscan?  Bloodwork only?  And did it show a Stage (1,2,3,4, etc.,) and was it listed as 'Compensated' or 'Uncompensated'?

Pat
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Avatar universal
Ras:  Sorry I wasn't on line for a while, but you were given excellent information.

Also, I agree completely with Lynn, that you have a very low viral load, which, at the very least, means you lave a LOT of time to worry about treatment (tx) as hepc is a very slow developing disease.  

Also, if You read the genotype entry correctly, you are Gt 1.  Did it say 1a or 1b?  Gt one has two different strains.  Both would, these days, be treated, again, as Lynn mentioned, with Sovaldi (with either Ribivarin or Olysio), or more probably, by Harvoni (1 pill a day, period).

All can be arranged through Gilead, if necessary, but, again, it looks like you have a long time to make those decisions.

You have already done TWO of the most important things you can do to help your liver: quitting smoking and drinking.  Those are very toxic to the liver.

Having said all that, START NOW, drinking lots of water (1 ounce per lb up to 1/2 your body weight per day), and, if you are not already, start eating a healthy diet.  Cut down on red meats, sugar and sodium.  Eat fresh fruits and veggies.  Get at least moderate exercise - what everyou like to do, walking is excellent.  Some people swim, or bike, or prefer to go to the gym.  Point is, any exercise is good.

Dinally, so even if you can't get Ins right now, you have time to wait, as well as suggestions for other paths to tx.

Hang in there, and keep us informed.  I am interested in hearing the results of these recent tests.
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Avatar universal
Lynn, I'm really not sure about the genotype but I am sure about viral load  reading (676) ! Do you think it maybe safe for me to take Milk Thistle ? I did ask the clinic Dr. about this same question because of the different reviews on the internet.....He threw his hands up and said ask a liver Dr....well can't see a liver Dr. because of the insurance issues ....Do you think I should try it even if it's temporary until I can see a specialist ?                                                                                                                                                                                                                                             Thank you ,  Allen (ras_1961)
Helpful - 0
683231 tn?1467323017
That maybe could be <15 IU/ mL (less than 15  International Units per mililiter so you have if I am reading that right a very low viral load just barely detectable

I am not a doctor so just guessing here and also that you have genotype 1 so most likely with little liver damage and a very low viral load it will depend on what your insurance will want to approve some companied prefer Harvoni while others prefer Viekira Pak.

Good luck
Lynn
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Avatar universal
Hi ras....I know it is frustrating to wait. However, hep C is a very slowly progressive disease and treating is never an emergency. You might want to call Help4Hep at 1-877‑435‑7443. They may be able to help you with your doctor/insurance issues.

Another thing you can do is call your local hospital and ask for the social services department. They often have resources for uninsured or underinsured patients.

The third thing is to look at is the Bureau of Primary Care at http://bphc.hrsa.gov/index.html. Look for the box on the right hand side of the page that says Find a Health Center. Some of them do have doctors who can care for hepatitis C patients.

Wishing you the best.
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2059648 tn?1439766665
On the above referenced page.  Just to the left of the Savannah, Georgia
contact -  Is a heading "viral load".  Which gives a complete explanations
of exactly what the numbers mean.  
Helpful - 0
2059648 tn?1439766665
Here is the link to the number referenced for your city.  Because of your situation it would benefit you to talk to others in your community.  They would
be able to personally direct you to the the doctors they use concerning Hepatitis C and treatment.

http://www.hepatitiscentral.com/hcv/support/ga/savannah.html

Best to you
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Avatar universal
Hi again...I found HVC RNA and it says reported as 15 Iu/ml detected...genotype says 1 ? This seems to say ranges so I don't know if I'm reading this correctly ?
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Avatar universal
Thank you Lynn...My viral load is 676 with no period in between anything ...I'm checking out the site you sent now...Thanks again !!!!
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Avatar universal
Hi,Thank you again....I have 2 copies of my blood results....one where I was admitted in the hospital and released 11 days later...My viral load when I was released was definitely 676 with no period . between the 6 and 76..I also have my blood results from my first visit at the clinic but none of the abbreviations you mentioned are on either one ? ...But  I'll keep looking ...On the 24th of Feb. I had another blood test done...results are pending until March 10th 2015
Helpful - 0
683231 tn?1467323017
Just wanted to add if your treatment is either with Sovaldi or Harvoni there is also help from Gilead support path

http://www.mysupportpath.com

But first you will need to know if your doctor is planning on the meds I mentioned or VieKira Pak by Abbvie Pharmacutics
Helpful - 0
683231 tn?1467323017
Hi ras

Ok first take a breath and exhale things will work out

Congrats on stopping smoking and especially drinking that Allen will help to slow your cirrhosis.

Just wanted to let you know I likely have had hep c since 1979. I learned I have it in 1990 and then was told I have cirrhosis in January 2008.

I am still here and you will be too ok?

I can't help with your insurance questions I have insurance through my job but others here know about that I just wanted to let you know you can make it.

I think that number is your viral load expressed in logarithmic form here is a link to a conversion table

http://www.hepatitiscentral.com/hcv/hepatitis/loadchart.html

Per that table another way to express your viral load is 5,750,000 EQ/mL which is the same as 6.760 log

However viral load means little in severity of liver damage or treatment decisions it is only useful in monitor orient treatment for the response of the virus to treatment. What is important to know is your genotype for example 1a 1b 2a 2b and so on. Your genotype will determine what it the best treatment for your situation.

Best of luck to you
Lynn



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Avatar universal
I am not absolutely sure, BUT, I believe that is the viral load - the number of virus (viruses? virii?) - units per milliliter.

Part of what confuses me is the way they gave you the numbers.  That can be written as a number 676 - which is a low 'load' OR it can be written as a LOG which, I am not sure how they do this, but then it would read 6.76

I have a site which I will look up to see if I can get a clearer interpretation, but we have many on this Forum who are very knowledgeable and, I hope, will explain it more clearly.

Basically, it is my understanding, if yours is 676 that is a low viral load.
If it is 6.76 that is a higher (I read on another thread that over 6.0 is considered high, but have no knowledge or proof).

IN ANY CASE, (this is the part to pay close attention to). the viral Load, has two real purposes:

  1.  It tells whether or not you have hepc.
  2.  It tells if the meds are working, once you are on treatment.

I suggest that you ask your Dr's Office (Clinic) for a copy of your Laboratory results - not just now, but every time you have blood drawn, and keep your own copy.

When you get it, look at the "HVC RNA, PCR, QUANT". information.  It should show two rows, one with the numbers and one with the Log.  If you will post those, we will be able to give you more specific information.

Also, see if it lists a Genotype test and, if so, what is your genotype?  Different Gts (gt, genotype) responds better to different meds.

If nothing else, with that information, we can point you to information about treatment (tx) to copy and show to your Dr (if you haven't been seen by a specialist by then).

Hang in there, there is a world of knowledgr available from people on this Forum.  Also, got to Hepatitis C and see the tons of articles available to help you education yourself.  HepCand Me.com is one.  AbbVie has that one.  

Also, the (American Association for the Study of Liver Disease) is an excellent site for information.  The list recommendations of meds, combinations of meds, and length of treatment, etc., for each genotype (usually by generic name).

     AASLD Treatment Recommendations

http://www.hcvguidelines.org/full-report-view   .

With all this, do NOT get overwhelmed!  Take a deep breath, exhale, relax and just read.  Later you can read it again, and it will make more sense.  Also, read the threads on this Forum.  You will fet clarification of some sort, from just about every one.  

But FIRST, see if you can get seen by a teaching hospital or liver transplant center.

Never hesitate to come back here and ask questions.  We are a very caring, supportive, knowledgeable group - what one doesn't know, another will.

Smile, and be of good cheer!  This is a slow developing disease, which CAN be cured.  No one wants something like this, but if you have to have it, this is a great time - there are so many txs (treatments) available, and more being developed.  The treatment side effects (sides, sx) have dropped to mostly mild to negligible to none, which was not the case even 2 or 3 years ago.

Gird your self for the fight. You are becoming a warrior in this battle.  Good attitude is a mighty tool!  You are stronger than you know, and have a support system here to help you with that strength.
  
Pat
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2059648 tn?1439766665
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