Hi and welcome
Do you have any insurance? What country are you in?
Do you know yet what the extent if any liver damage your husband has?
With this information we can provide more specific suggestions.
Hep c 37 years
Cirrhosis diagnosed 01/08
3 time null responder to old interferon treatments
Thank you so much Lynn for responding. Yes we have BCBS Alliance insurance. We live in Illinois, USA. We only found out about his diagnosis 4 days ago. All the Doctors he has bee up until this point have been treating him for stomach ulcers and GI issues for bloating, ect. We just got lucky with a new Dr. that he starting seeing about 2 mnths ago because he git tired of not feeling well and the typical run around with treating his symptoms with prescription meds, one after another. The Dr he is seeing now decided to do a Hepetitis test just by coincidence. They called Friday and told him he tested positive for Hep C. They are now testing that same blood draw for the genotypes (??, I think that's what they called it). He also had a abdominal sonogram done on Friday and we haven't got the final report back yet, but the piliminary report as of Friday afternoon said that they showed his gallbladder had a lot of sludge in it, but Supposibly no liver or pancreas inflammation and or inlargement, but again that info came from a nurse assistant about 3 hours after having the sonogram done.
He was told to find a gastronologist specialist to follow up with and gave us some minor details of treating Hep C. Treatments like, it can be curable and that treatment meds can be "costly". We will be making a appointment with a specialist tomorrow to get more answers.
Needless to say we are both in a panic state with doing endless research via the Internet thus far. When she said costly and we looked up the cost and that insurance companies most always will deny coverage for the meds, I thought I was going to have a stroke!! Both of us are scared and are just getting started with journey. Now worried about me, we've been married for 26 year and of course sexual active and fearful that he could have transmitted it to me also.
So glad to hear that you have been cured, Amen to that!!
Thanks agian for your help and reply,
OK first breath in and exhale slowly it will be ok.
I added my stats so you can see that one can live a very long time with hep c and only about 20% of patients will progress to cirrhosis over 20 years time I was just lucky I guess but even with cirrhosis for 8 years now and being almost 58 I am still here and still doing fine.
I also have BCBS of Illinois because my employer is head quartered there although I am in Washington state. They are a major company with about 160,000 employees in many states as well as overseas. Even with having cirrhosis I was initially denied treatment but I was able to appeal and get 24 weeks of Harvoni. I have a friend who has no liver damage and she was able to appear and get treatment as well.
His treatment meds will be determined by his genotype that is why they are testing for that. Most common in the US is genotype 1
He may also need a liver biopsy to fully determining how much liver damage he has unless his doctor can perform a fibroscan test which is similar to an ultrasound or can do a fibroscan blood test.
If he has genotype 1 he can be treated with Harvoni or Viekira Pak. The more liver damage he has the easier to get treatment. I know more about Harvoni which is one pill a day for 12 or 24 weeks depending on prior treatment history and if the person has cirrhosis. Some with low viral load without cirrhosis and no prior treatment maybe considered for 8 weeks of treatment.
Unfortunately Harvoni costs $1125.00 a pill so even the 8 weeks cost insurance $63,000.00 but I am sure there is different pricing for insurance companies.
As far as sexual transmission the risk is very low for long term monogamous couples. We have many here where one person has hep c and their partner does not. In fact the CDC does not recommend such couples take any special precautions like barrier protection (i.e. condoms). Increased risk for sexual transmission exists for persons who engage in rough sexual practices and in the presence of HIV infection.
You should be tested for hep c antibodies just in case but please know your risk is low.
There are ways to get treatment even with minimal liver damage. But rule number one is appeal, appeal, appeal to your insurance. Literally 3 times is required then other avenues can be explored but don't give up. Just to add some here were able to get treatment with out problem from their insurance without hassle even with no liver damage.
Ask your gastroenterologist if his office is willing to participate in your husbands appeal.
Please come back with your questions I expect you will have a few. We are here to help
I think before you start thinking about treatment you need to make sure he has hep c. The test hey did was probably just an antibody test which tells you that at some point he was exposed to hep c. Then he needs a viral load test to confirm if he has it or cleared it on his own. If the viral load test is positive then they do the genotype test which tells you the strain of the virus and indicate what treatment meds to use.
There are many patient assistance programs. Wait until you find out if your husband's doctor prescribes treatment and if your insurance will pay. If you run in to trouble come back and let us know and we will post contact info for you about where to find assistance.
Thank you all SO, SO much for your responses to my post! Sorry I haven't responded until now. We've been in and out of Dr appointments and trying to gather more info. Thank you flyinlynn for you comforting words of just breath. Hearing from all of you has helped me to take a step back and take things one day at a time. I hit the panic button with my husbands results and like I said it has been overwhelming. The good news is we got him a appointment with a top notch Doctor, Dr. Bacon, and he will be seeing him mid February, so that has helped me tremendously knowing he's in good hands!
He had a sonogram last week and it showed no enlargement of the liver, or pancreas, but did show some sludge in his gallbladder. Another good note is both of us are losing weight and look and feel amazing on this new diet we have jumped into with both feet. All water we are consuming is purified. We bought a NuWave cooker, which I Highly recommend to anyone out there for healthy cooking, it's crazy Amazing, easy and fun to use!! We're juicing fresh fruits and veggies Every day, eating white fish (no shell fish), chicken and turkey. We've cut out salts and sugars and focused on proteins. Hoping that all of this will make a difference in helping the liver.
We are now in a waiting period until he sees his specialist in February. I just had my labs drawn yesterday and anxiously waiting to hear about my results.
We did however get his results back regarding his viral load and here is what they showed...
Hep C RNA, QT-FLEX GENOTYPE
HCV IU/mL 2465512 H IU/mL <15
HCV log IU 6.4 H log IU <1.2
No flippin clue what any of these numbers mean and his primary care Doctor didn't have much insight to share other than telling us he had "acute Hep C". I of course have tried researching these results via Internet, but it's all confusing info out there and i can't make much sense of it. I probably should keep myself off Google and wait for professional advice, clearly Google has you on hospice in merely 3 clicks, lol!
If anyone out there can tell me, or help me understand what we're looking at I'd be greatful!
Again, Thank You to all that have responded to my initial posting! This site has been an amazing experience and wealth of info for both myself and my husband. A lot to take in, but willing to absorb and educate ourselves as much as we possibly can! :)
Hi Victoria. Your hubby is lucky to have such a caring and involved wife. I believe Dr. Bacon is the hepatologist who treated Naomi Judd. He has a wonderful reputation.
I can explain your husband's RNA results. His viral load is two million, four hundred sixty five thousand, five hundred and twelve (2,465,512) international units. It can also be reported in logs and his would be 6.4 logs.
Because he has a viral load (they can see the RNA of the virus in his blood) it means that if his exposure was longer than 6 months ago, he has chronic hepatitis C. If he was just exposed then he would be considered to have acute hepatitis C. The important thing to remember is that viral load (RNA) is good for two things. It confirms the presence of actual virus and it is used for monitoring if treatment has worked. It does not matter if his viral load is 1000 or 10 million. How high or low it is does not matter. The numbers are huge but do NOT let that worry you. The <15 is the lower unit of quantification in international units. That can also be reported as <1.2 logs. It is how low the test can count down to. So anything below 15 is considered undetected and the patient does not have hepatitis C. Of course the goal for treatment is for the viral load to drop to <15 (or <1.2 logs).
It says the test reflexes to genotype. That means if he has a detected viral load, and he does, they will automatically do a genotype test. You need that because it gives the doctor information about which treatments are the best for your hubby. If you have to be diagnosed with hep C, now is a great time. The new direct acting antiviral are curing almost all patients with minimal side effects and in a short amount of time compared to the old treatments.
I wish your husband the best. Let us know what Dr. Bacon says.
Thank you SurfsideGal for your kind comment about my husband being lucky to have me on his side thru this! He's my best friend and I will always have his back. I panicked when we first learned of his diagnosis, I'd do ANYTHING to save him and keep him around as long as I can!! I'm still scared with all the unanswered questions we have until he sees Dr. Bacon and we figure out a treatment plan. I refuse to think anything other than a good outcome and for him to be cured. :)
Thanks to the moon and back for all your great insight regarding his lab results. Again I panicked when I saw the high numbers and tried to Google them. I saw a medical site that those numbers were looked at as extremely high. UGH! All I know is the life style change we drastically jumped into after learning about his hep c has improved both of our lives. We're both losing weight, he's lost 16 pounds, our skin looks younger, we feel amazing, we've joined a gym, ect. I'm just hoping that all that we are doing on our own with the healthy stuff will give him a better chance at beating this stuff. Again THANK YOU for your response!!! I'll say it again this website is amazing to be able to get "real" feedback to help us thru this. Thank you everyone! :) :)
I will for sure keep updating and let you know more about Dr. Bacon after my husband sees him.
Please don't worry about how high his viral load is. How high or low it is, is not prognostic. Years ago, before the new direct acting anti-virals were available, a person with a high viral load had a harder time clearing the virus. That no longer holds true. I cleared on one of the new treatments and my starting viral load was over 7 million. Your hubby will be fine. Hang in there.
You're the best SurfsideGal Thanks for your encouraging words! So happy for you that you beat this!!