Avatar universal

How can I be a support to someone in this bad of shape?

My husband was diagnosed with hepatitis c genotype 1a officially in 2011. He was told that he had the rare genotype and the doc referred to it as "The Big One." My husband believes that he got hepatitis c because he was a dumb teenager with a two year history of drug use. He also has 4 tattoos from non-tattoo shops. My husband and I have been together for 13 years now and he hasn't done any drugs since we've been together. That I know was a part of his past, but it hasn't been a part of his adult life. We have two children together, ages 10 and 9, and they are both taking their dad's sickness very hard. I am making this post for mental help. I don't know how to support my husband the way he needs me to. My husband and I are young, and we both feel like no one, doctors, friends, family, NO ONE believes how sick he is. He has been to 4 different doctors and all 4 of them have treated my husband like he is exaggerating his pain. He was even denied Medicaid for help getting treatment. I am a student and I work at a job that does not offer insurance. I have no money to help my husband, so I don't know where to go for help. My husband continues to drink beer because he feels like it's the only way that he can deal with the pain, even though he knows it's harmful to his liver. I have had to watch my husband curl up in a ball holding his stomach while he cries how bad it hurts. My husband did concrete for 15 years before he found out he was sick, and he hasn't been able to work for the past 2 years now because of how bad his body hurts. My husband was a very hard worker and to observe him going from working so hard to not being able to work, I know he's not making it up. Our children have to hear their dad every single night throw up in the bathroom before they go to school. My husband's pain is becoming mentally unstable for us all. He is becoming angrier and angrier. He has suicidal thoughts and tells me all the time that he wants to die because he can't stand the pain that he is in. He feels like me and our children don't support him with what he's going through, but I know that it's angry talk that he doesn't mean and he's just saying it because he's in pain. I don't know where to turn for help or how to get my husband the help he needs. If anyone has any advice that would be great. How can I be a support to someone in this bad of shape?
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Avatar universal
I'm glad that you got him to the ER, but he must stop drinking now. If he can't do it alone, he must go into treatment to stop drinking. He is further damaging his liver with alcohol. He won't be able to treat his Hep C if he's drinking alcohol. If he keeps drinking and if he doesn't treat his Heo C, he will get sicker and sicker until his liver fails or he develops liver cancer and you and your children will watch him suffer with end stage liver disease. He must not drink even one beer ever again, and then he can treat his Hep C.
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315996 tn?1429054229
Is he still drinking alcohol? Sure sounds like either that or his liver it totally shot.
Of course, I am not the person to ask, I am not a doctor or expert.
What area is this pain?
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315996 tn?1429054229
Oh, I just saw that he is still drinking. He needs to stop. He is an alcoholic first, liver patient second.
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Avatar universal
Yes he is still drinking beer, not liquor, every day.  He tried to stop drinking back in the Fall 2011 and went into shock from alcohol withdrawls on Thanksgiving night.  He also went through alcohol detoxification in the Fall of 2012, but we don't have insurance to pay for mental health treatment which is what he needed to help detox completely.  He went back to drinking.  His pain is in his liver.  His liver makes these gurgling, bubbly sounding noises every single morning.  My husband explains to me its because he needs a beer.  It sounds like the sound your stomach makes when you're hungry, only this isn't what it is because its coming from his liver and not his stomach.    
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Avatar universal
I have a few suggestions.

I'm not so sure your hubby is getting good medical care.  I am a genotype 1a.  A Genotype 1 is the most common genotype in the USA, and so you can infer that it is NOT rare.  Neither is a genotype 1a as compared to a 1b.  It sound like the doctor has a flair for bad facts or drama.  A genotype 1 is the toughest to treat and I think you'd find some agreement that a 1a may be tougher to cure than a 1b.  ..... but a "big one?"  It makes me wonder about your doctor.  I just would not chose that adjective.  The flip side is that since it is very common in the US that it is a targeted genotye for companies to cure.  Yeah.....that is how rare it is in the USA.  : /

But then...... I wonder about your husband as well.  He has HCV and drinks to ease his pain.  
.......Hmmmmmmm the alcohol is causing him damage, causing him pain, and any doctor that he talks to and truthfully reports that he drinks..... well..... many people might think; if he doesn't care, why should I?  
Your husband would have to look hard to find a more damaging pain reliever.  Is it possible that he has a drinking problem and cannot quit?  

He may need to find a different doctor, he may need to find a different form of pain relief; even pot.....which I am not recommending, but it would be a better choice than alcohol.

I think your hubby needs to get an evaluation about his liver damage and general status.  For instance..... if he is cirrhotic and drinking alcohol he could be be nearing some point of no return.

Any doctor could order a biopsy, but a cheaper faster (and less accurate)_ test is a fibrosure.(it's a labcorp test)  It is a simple blood draw, and may cost 350ish dollars w/ no insurance, whereas a biopsy may be over several thousand. You may the results within a week.  
...Don't bother getting the test unless he fasts about 12 hours before the blood draw and I would wait a week of no drinking to help get a more reliable result.  If he is in bad pain you also need to watch his use of tylenol use.

There are programs for assistance with treatments if you are low income.  Trials are also available, but they will not likely opt for a drinker; I'm sorry.

He can apply for disabilty/ medicare, but understand that it may take several attempts, but at one time the benefits may also be retroactive.

I would try to get his drinking fixed.  I would get his damage assessed.  I might consider a different doctor; is this guy a GP, a gastro or a hepatologist?  How many people has he treated?  Is it his specialty or does he do a number of other ailments?  It could be that your hubby needs a top notch doctor if you are wondering about yours.

Whereas I know nothing about your hubby, I would venture a guess that he could benefit from taking Vitamin D3, vit B especially b-12 and he may be low on several others or micro-nutrients, such as zinc or selenium. These are rather typical that many people are low on these, but far better to get tested.

my 2 cents

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3122657 tn?1357432602
Im so sorry to hear about your husband but his drinking is a very very bad thing even if he does get on treatment the drinking is gonna hurt him in a big way somehow you have to try to get him to stop the drinking and also try to get him to a low income medical program i lost my job due to my illness and my insurance went with the job i do get all my meds free from the drug company there is always hope but his drinking is not gonna end well for him there is hope Hep c is not the end of the world
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Avatar universal
Thank you so much for your responses.  This is my first time turning to the internet for advice.  I wish I could get my husband to think more positive.  He already believes hep c is the end of the world for him.  He's so far gone in depression from it that I don't know where to go for help.  I have applied for assistance in the county that we live in and were denied because we weren't able to prove how sick he really is.  Unless I take a video camera and record his every move and word every day, that seems to be the only way that I can proove how sick my husband really is.  He was turned away from the only mental health care clinic we have in my county because we don't have insurance.  They only take homeless people without insurance - even when I told them he is suicidal - they still turned him away.  I found a mental health care clinic in another county, but they wouldn't help him because we are not a resident of that county.  I have been told by numerous people that the Pegasys company would work with him for the treatments, but my husband has had such bad experiences with doctors that he feels like Why Bother?  He feels like any doctor I take him to won't believe him.  Yes he has had bad experiences with doctors since he found out about his disease.  He wants to quit drinking, but doesn't have the right support to stop drinking.  He blames his family for the reason that he can't quit drinking.  I know he's an alcoholic and so does he.  Most people in his situation do not have a loving, supporting spouse, and that is why people don't believe how sick he really is.  Most wives would leave their spouse for putting up with what I put up with in a day/week/month/year.  He had one doctor detoxify him with Cerax to help with the alcohol cravings and he claimed that it worked physically just not mentally.  He went right back to drinking.  I need any advice on where to take my husband.  Where is a good GI doctor or Hepatologist in Utah that will actually accept him as a patient no matter what county I live in?
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1856046 tn?1330237245
That sounds a lot my story except I quit drinking 18 years ago with the help of AA.
I thought my main problem was drinking and all I had to do was quit and everything would be ok.
I became what is known as a "dry drunk' which is someone who doesn't drink but never dealt with the underlying causes. That went on for 11 years and the last 5 years were full of depression and constant thoughts of suicide and self-loathing.
Once I went back to AA, got a sponsor, and worked the program like is suggested, my life turned around, my depression mostly vanished, my self-hate went away and I was able to see many things more clearly and let go of trying to control other people.
Of course you and the kids don't know what he is going through, how could you? Only another alcoholic or hepper really does.
My advice is to get him to go to AA and join a Hep C support group (like this one) and he will find people who do know what he is dealing with and how they have came to be able to deal with their challenges.
AA is free and they have a hot-line you can call and talk to them about getting your husband to at least think about it. There is also AlAnon for people who live or deal with an alcoholic. If you or he do go, it is important for you to listen for the similarities that other people have in common with you and let go of and NOT focus on the differences.
He really does need to stop drinking asap or it will mean death and not a pretty death either. Look up the symptoms that come with End Stage Liver Disease (ELSD). He has a grea deal of influence in his actions to stop or postpone this.
At one time I though that I was worth more dead than alive to my family as they could get SSI. I am SO glad I never went that route and come to realize that kids need a mother and father in their life if it is possible, which it is!!!
Good luck and God Bless,
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3122657 tn?1357432602
Have you tried taking him to the emergency room about the pain cant they give you something saying he is very very ill so he can get so kind of help as far as a doctor and insurance there has to be some place he can get the help he need

Big Daddy is right try to get him onto this support group site trust me every one of the caring and kind people will try to give him all the support he needs to try

It is a start

Best of luck to you
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4896357 tn?1360670904
He HAS to stop drinking entirely and eat a more liver friendly diet. He has to get help for his depression since he will not be treated until he does because the difficult tx raises to possibility of suicide. Deal with that first. Then stay on the internet and read all that you can. Call everyone you can find on-line. This means Doctors, support groups, medical aid programs, hospitals where trials are run. I started treatment a month ago. I'm getting $100,000 worth of drugs free. I found a compassionate Dr. who charges me half rate. He lets me get my bloodwork done directly at the lab of my choice. I found a lab who gives me 40% off because I have no insurance. He has to want this though and the fact that he's still drinking indicates that he doesn't even care at this point.
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Avatar universal
I ended up taking him to the ER today and they prescribed him Librium to deal with the alcohol withdrawals.  They also referred me to 3 places where they take uninsured people so that he can get the mental health care that he needs.  I hope one of these places work out.  
I want to thank every one of you for your support.  I think it's cool to see so many Americans looking out for someone that they don't even know.  Hepatitis C is very real and very hard to prove the symptoms and it's good to know that there are people out there that do understand.

I had my husband read these comments and statements and he says that t you all have honestly helped him a lot and he wanted me to let you all know.  Thank you for the good advice.
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4384361 tn?1399998230
I've been reading this thread since it was posted and you and your husband received some great advise.  I just want to add that it took me over a year after I was diagnosed to give up the alcohol.  I really felt like a piece of crap the entire time I continued to drink.  My liver damage didn't progress a lot but that was probably pure luck and good genes.  I read this forum for months before I created an account and started sharing.  MedHelp and the people who offer their experience and advise have been a lifesaver for me.  They helped me deal with my shame and offered me hope.  Through this site I've become very educated about my virus.  It's the second best thing you can do for yourself and it only takes a few minutes a day to read the new posts.
I will be thinking and praying for your and your husband.  There are many on this site who've struggled with alcohol along with our diagnosis.  
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Avatar universal
i have or had genotype 1A and cirrhosis.  I finished treatment 25 weeks ago and am awaiting the outcome of blood test to see if i am cured.  about 7 years ago in 2006 my liver started to ache non-stop.  it was the first thing i felt in the morning and the last thing i felt at night.  prior to that time my liver ached intermittently  and seemed to be the worst after i drank.  I started treatment in September 2011 and treated for 48 weeks.  Within a month or two after starting treatment my liver stopped aching and has not ached since.  physically i feel better than i have for many years.  i pray that your husband can allow grace into his life and find peace.
many blessings
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Avatar universal

hi i am really pleased for you both that you have managed it get the help that you need. I agree with all the others this site is absolutey fantastic the advice and support is unbeleivable it as helped me and my husband so much . Your husband as taken the first of many steps and i wish you both good luck and best wishes please keep reading and using this site keep us posted best wishes cheflady, England
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Avatar universal
Good luck...I hope everything works out well for you both.  Your husband probably won't be happy to read my comments but they are from experience, the heart and  I am a realistist.  It's very hard for a person to change. So take these in context of what they are.  You got good info & advice in the other posts. But please remember, it is him who has the drinking problem which is ultimately affecting you and your childrens' lives.
1. You can not stop him drinking.
2. The only one who can do that is him.
3. He has to want to.

There will be some who do not agree with me on what I am getting ready to say but coming from an alcoholic set of parents and 2 ex's who both had drinking problems and I thought "I could help them"... and I was an EMT who also worked the detox ward if I wasn't working in the ER. I was also a bartender for almost 20 yrs. I know drinkers.
1. Alcoholics lie not only to themselves but to friends, family, bosses, etc.
2. No one can help an alcoholic until they are ready to admit they are one.
3. Most alcoholics have underlying issues that drive them to drink.
4. Or it is a habit that has been filtered in by their enviroment.
5. You can not fix them.
6.  AA tells you that alcoholism is not the amount you need to drink it is the need to drink.  If a person needs to have "a" beer every day after they get off work, they have potential problem.

I am a Workaholic...or was...worked fulltime the ER and worked fulltiime as a bartender. Several of the large companies here had excellent retinention programs for their employees who went through detox then to AA,  Would watch these guys do all the steps they needed to keep their jobs by day and then show up in the local bar the same night.  

You have yourself and two children. Your children should be your priority if he is not going to want to take care of himself for you or your children.

I am Hep C, ESLD stage 4, was not a consistent or heavy drinker but the day I got this diagnosis I put down the occassional wine glass and walked away from drinking,  My Hep C was most likely caused from a toxic overdose of prescribed meds over many years for excessive migraines and had had a frontal lobe concussion where I was in a coma for days, plus my second crazy drunk ex decided to drive off the Bahia Honda bridge and had to be literally put back piece by piece...so was in extreme pain for many years so to get hit 20 years later with the Hep C was another slap but I knew that I had to pull from inner strenght to get through this.

I miss a good red wine, I am intrigued by all the different beers they have now...but can't have any.  Can't even smoke my favorite plant. Walked away from all of that 20 years ago.  No one could do it for me.  No one can do it for your husband.

He just needs to realize that he is not a rare bird...he is in a flock of many. Some of us do good with treatment, others do not. Have done every type of treatment they have thrown at me...some I just couldn't tolerate.  But he can't give up.  Big Daddy kind of said it all in regard to AA. And as others pointed out there are agencies who will help those who want to help them selves.  Being from the medical field you really can't lie to them.  Can not tell you how many people would tell me that they didn't drink or smoke or do drugs...you can see right through it.  So what someone said it true. If he doesn't want to help himself, no one can do it for him.  

And here is some more unsoliticated advice.  Stop drinking, smoking. Drink more water.  Start trying to look at your nuitritional needs for your family. More fruits and vegetables.  Stop eating red meat.  Watch salt, sodium and sugars.

And I will say to your husband from the heart....those two kids are absorbing everything you do....I have an alcoholic brother who "learned" the habit from home...then went to college and it became worse.  He has underlying issues that he will not deal with.  Until he is ready to admit he is an alcoholic and has a problem, as much as we all love him, there is nothing we can do.  He calls his fellow cronies his support group but I can tell you this...when his liver goes...they won't be around to take care of him.

I wish you all of the best for you, your husband and children.
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Avatar universal
I completely agree with you that I cannot change him and that he has to want the change.  It sounds like you have had some bad experiences with alcoholics and I'm glad that I haven't experienced anything that hard.  I always try to remember that somebody out there has it worse than I do. As far as more underlying issues, yes of course there are!  Too many to even go into on this website.  I have watched his alcoholism become the way it has since he found out about his disease and since he has been unable to work for the past two years.  My husband became an alcoholic from doing concrete work.  When we first started dating 13 years ago, we were both social drinkers.  When he found out about his disease, that's when the drinking became worse.  His boredom from being home and stuck in the house has not helped his problem.  He went 3 months in 2012 without drinking all on his own.  He went back to drinking because he was sick of feeling flu-like symtoms every day since he stopped drinking and he believed that if he drank, that he would go back to "normal."  Of course, that isn't what happened.  He's never been to a head doctor before and he's never been diagnosed with anything so I'm hoping that this will actually help him.  Again thank you for the advice and good luck to you.
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3122657 tn?1357432602
I  have to say i  agree with heart_in_the_keys that is that same as for any type of addiction me myself it was street drugs as a teen i never got help because after about 3 years of doing drugs i just got tired of that life and just stopped using and it did not matter not one little bit that my family all tried to help me i went into a shelter for bad kids a few times and jail a few more times but none of that ment anything to me until one day a light just came on in my head and i decided i did not want that life anymore and i stopped

i think the point i was trying to make was no matter how much help you get and no matter how much love you have around the decision to make that change in your life  has to come from inside ones self yes support is very helpful but he has to want to make that change

Well said heart_in_the_keys  : )
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Avatar universal
Talia, it still doesn't make sense to me that he knows that drinking is further damaging his liver, his liver damage is what's causing his pain, and yet he's continued drinking because of the pain. I hope he will get the treatment he needs for his alcoholism because he won't be able to treat his Hep C or qualify for a liver transplant while he is drinking alcohol (even one).
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4670047 tn?1375730401
I second that! Well said!! Talia  one of your statements bothers me so much. Your husband says he feels like you and "the children" are not supporting "him". That should be your ticket out. If he doesn't go into one of those places within lets say 48 hours' please take your children out of the environment. You can always go back when things get better. But you can't reverse what's coming next. Please go back and read heart_in_the_keys. And then go back to some of your comments. I could go on & on and never get through to you. I'm not punishing you, trust me as bad as I sound. This all comes from experience. I will be hoping he goes in to one of the places offered. You sound very strong! That's great for the kids to have, but your husband needs to lien on others with addiction. Bless you talia!!!
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4384361 tn?1399998230
Great advice from Heart_in_the_Keyes.  I want to add that I went through treatment three times.  Was sober for seven years.  Quit a a few times on my own for months at a time and received all types of counseling.  My doctor wouldn't treat me for my Hep C until I addressed by depression and alcoholism.  I saw a psychiatrist for 1-1/2 years.  I continued to drink.  I have two granddaughters who I am extremely close to.  They are the love of my life.  One day my shrink told me that if I died by my own actions, their lives would be forever defined by "my grandmother died when I was XX years old of alcoholism".  It was that one statement that became the turning point for ME.  Blessings, Talia.  
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Avatar universal
Thanks for your reply...I know my post might have sounded harsh. It was not meant to be.  This website is to help ones who are ill and/or their family members with how to deal with Hep C.   You are the one who posted for the help, so my focus was more on you.  You are very important. Please do keep posting so we can back you up and help YOU.

First step is to inform ones self about the disease itself.  
1. You and your children are not to blame.  
2. Where or when your husband picked up Hep C isn't important at this point.  It happened.  He has it.  He needs to do what is necessary to face it. There are millions of people out there with the same virsus.  Some of them who have never even drank...there are many reasons and ways one can get Hep C.
3. Everyone feels like it's the "end" when they 1st hear but it is not the "end of the world" if you try to fight it.  
4. You can't take care of anyone who won't try to take care of themselves.
5. Alcoholics have a compulsive physiological need for and use of a habit forming substance.You can not fix this. Only they can.
6. You signed up to be a marriage partner... not a co-dependent.
7. His liver doesn't "gurrgle" to indicate he needs another beer...what bs.
8. Stop feeling sorry for him. He needs to be responsible for himself.
9. #8 is hard..it took me way too many years to realize that I couldn't help or fix my 2nd husband no matter how much I loved him.
10. Oddly enough, all my relationships were with people who I thought I could help or fix...stemmed from my childhood...all were alcoholics.  
11. Finally had to save myself.  Painful? Yes. Scary? Yes. Freeing? Yes.
12. My 1st husband died from a heart attack and was an active drinker, cigarette smoker and overeater who would not face what he needed to do to get well.
13. You are the mother. Of a 9 and 10 year old. The mother is the memory maker for the family. 20 years from now when they gather, what stories do you want them remembering?
14. When I was diagnoised with Hep C 20 years ago I was in total shock since I worked in the ER and did the Hep A/B shot. But since then I realized that there were many ways I could have gotten it.  
15. I have worked 60 - 80 hours a week or more since I was diagnoised until this last year. I just took a deep breath and did what I need to do. So you can work with Hep C.
16. Proper blood work will tell a person if they have Hep C.  And yes, it is one of those diseases that doesn't show outward physical symptoms at first or until many years later.  

For your kids...my 1st hepatologist told me not to waste time on how I got it but to focus on doing what was necessary to get better.  Here is what he told my granddaughter who was with me one day who wanted to know what Hep C was...she was 10 so he broke it down very simply to her...the older posters here will have a laugh with this but:

"You have a body. Your body has a liver. The liver is the washing machine for your body. It is important because it pumps approximately a gallon of blood per second from your liver to toes to brain.  The liver removes all the poisons and toxins you ingest. There are interferons in the liver. The interferons are like the laundry detergent for your liver. The Hep C kills the interferons. Once the interferons are all gone then the Hep C related problems will start occuring."

It made sense to her...as she has gotten older and is getting ready to go to college she is going to study nuitrition and physics at Purdue.

Follow some of the other posts & their advice. He needs a hepatologist, not a regular doctor. His stomach area could be gurrling from other issues.  He needs to advoid alcohol, cigarettes, pain meds, tylenol. Other over counter pain relievers can cause stomach ulcers. Drink water, water, water. Black coffee is okay too, but be sure to drink the water.  He surely doesn't want to be at the stage that I find myself in or some of the others on this site do.  

Here is a real fact:  If he is in pain right now...he needs to come to grip with it.  If he does not, it will only get more painful as he goes on. Then what happens?  He can't live without a functioning liver.

Keep posting...read posts that are already posted...I found info within a post that helped me that wasn't even titled like anything I was looking for. This website is one of the best. They have been a God send to me and there are many, many compassionate people on here that want the best for you, your children and your husband.  Take a step back. Take a deep breath. Evaluate what you can and can't do.  He has to take responsibility for his body.

Everyday that goes by, the options for those with Hep C become better until one day there will be a cure.  But at this moment there is not, so we have to follow a protocol of health and good behavior...and this coming from an old hippie..... for those who follow the protocol there are many options to stop this disease before it becomes too late.  For most they work.

IGod Bless you Talia on your path.
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Avatar universal
Thank you everyone!  Again I took him to the ER for reasons unrelated to my post.  They prescribed him Librium and so far he isn't drinking 4 days now.  I am taking him to the clinic for pyschiatric help on saturday.  Hopefully everything works out.  Thank you all for your help and advice.  My husband is one of a kind and I don't want him looked at as a bad person.  He knows he has a problem and he wants for the first time in his life to actually pursue doing the treatment and getting help.  He is really scared to do the treatment because of one example being his grandmother passed away from doing chemo because she had lung cancer and she never smoked a cigarette a day in her life and 2 months into it she died.  He is feeling a lot of anxiety about it, but he is actually telling me now for the first time in 2 years that he wants to do the treatment and do what he needs to do.  There are so many things I could go on and on about what he's scared about.  Like I said earlier my husband and I are the couple that are different from everyone else.  Anyone that meets us can tell the love that we have for each other.  
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Avatar universal
No one doubts that you love each other. We just hope that you are not enabling his alcoholism inadvertently. He can't treat his Hep C until he has stopped drinking for a period of time. He needs to stay quitting drinking, and then treat his Hep C, and follow all other doctor's orders to protect his liver from further damage (no acetaminophen, low iron, no drugs, no alcohol, fresh fruits/veggies, drink water, no iron supplements), and have blood work and liver scans or ultrasounds every 6 mo or so.
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Avatar universal
yes I understand he needs to be alcohol free for at least 6 months before treatment can be an option.  that is the goal.  I don't know if it's the state that we live in, but there is no good help here.  My husband was prescribed tylenol 3 by one of the doctors that he saw and he threw up blood.  When he went back they diagnosed him with strep throat even though his test came back negative!!!
Then the GI doctor that he saw complimented him for losing weight when my husband brought it up as a concern!  There is only one GI doctor here in the county we live in and we will not go back there.  We are going to ask the clinic on Saturday to refer us one in Salt Lake County.  Unless anyone out there knows of one in Utah that would help that would be great!  I'm almost willing to drive to another state to get him the help that he needs.
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Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
Can I get HIV from surfaces, like toilet seats?