hep-c and liver cirrhosos (chronic)

[ras_1961]

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 ?

[dontworry_behappy1]

Welcome to the forum.   Here is a number to a Hepatitis C Support in your
city.  912-898-9654.  This contact would know about Doctors in your area.

You are not far away from March 15th.  Its only a few weeks.   Its going to
take you a few months to get yourself to a doctor, insurance and start treatment.   Give this contact in your area a call.   Hepatitis C is curable
for many.   Take a deep breath.  If this contact cant give you more direction   come back here.  

I hope this helps

[patra_]

I have not lived in GA for many years, but I believe there is much care through the Dept of Health in each city.  If you have tried there and they are th Clinic you refer to, ask them to see if they can get you into a teaching Hospital clinic or a Liver Transplant hospital clinic.  I believe they do take patients without Ins.  At least they used to, and on a sliding scale, for payment, so as to be affordable to all, but so each could 'pull their own weight', so to speak.

I hope these things are still true, as, as I said above, it has been MANY years since I lived in Ga.  Things could have changed.

At the least, ask you treating Dr at the Clinic, to read up on it and order the RNA PCR (Viral Load) test and the Genotype Test - both blood tests.  Maybe they will pay for those.  Then S/he could read up on the treatments for each genotype and write the prescription and work with whichever company makes the med needed (Gilead or AbbVie are the two right now) to see about getting free meds.  

Another possibility is the Clinic could try to get you into a Trial.

However, I believe the Teaching Hospital or Transplant Hospital would be your best bet, if it can be arranged.  I don't know what Savannah has, but I know Augusta has a Teaching Hospital.

Good luck and I wish you treatment soon!

Pat

[ras_1961]

Thank You!!! Maybe I can ask you another question ...The clinic Doctor did do blood work and I do have a viral load reading but he never explained it, maybe you may know ? It reads viral load 676 or 6.76 ?

[ras_1961]

Thank you I will call..I know March 15th is not far away...I'm just a little impatient an a whole lot scared !!!

[ras_1961]

912-898-9654 was a residential address.....I guess it was a wrong number ?

[dontworry_behappy1]

That is a correct number.   Hepatitis C support group in your city.  

[dontworry_behappy1]

I sent you a message.   Look in the top right at the blue bar.  You have
1 message.

[patra_]

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

[flyinlynn]

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

[flyinlynn]

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

[ras_1961]

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

[ras_1961]

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 !!!!

[ras_1961]

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 ?

[dontworry_behappy1]

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

[dontworry_behappy1]

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.  

[AWorriedMom]

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.

[flyinlynn]

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

[ras_1961]

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)

[patra_]

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.

[patra_]

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

[patra_]

Lynn:  

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

Pat

[ras_1961]

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 ?

[patra_]

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

[ras_1961]

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 !