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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.
Advocate1955
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Avatar universal
As a person who has had to deal with both Hepatitis C and alcoholism, I suggest treating the alcoholism first. Until he stops drinking there is no way to know just how bad your husband's liver is or isn't. As far as the alcoholism goes, I only ever found relief from the help I got in AA.  AA saved my life.  I tried detoxes, rehab, talk therapy, but it wasn't until I became very actively involved in AA that I found relief.  It didn't matter how badly I didn't want to drink or how many good reasons I had not to, I just couldn't stay away from the first drink. Maybe a week, or a couple of weeks but the mental craving always won out in the end. Anyway what may or may not work for your husband is for him to figure out for himself.  AA worked for me. It took me a couple of times, but it eventually worked. Hope all works out.
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Avatar universal
Bless i cant believe what is happening to you both,please try and get him to take is anti depressents the should really help him and i cant see them making him chuck up, isnt the Librium tablet form? I hope he gets better treatment at the other clinic on Saturday Good luck and keep us posted also tell him a massive well done sticking with the librium and saying no to a beer.you should be proud
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Avatar universal
  Try to make sure he keeps his appt,once it is made, with that Hepatologist at University of Utah, that is a good referral. Once he has a biopsy, he may find out he is still at Stage 0 and has no damage to his liver, I have seen this happen before.
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Avatar universal
It's really hard to support him.  My original post was for help supporting him.  I don't know how to comfort him when he's upset.  I try so hard to keep him calm and happy, but he tells me flat out that he doesn't want to be happy and that nature is already taking its course with him.  I found a good clinic Saturday night that referred us to a hepatologist at the University of Utah.  My husband is still having alcohol withdrawals but hasn't given in and bought any beer.  They prescribed him a bunch of anti-depressants, but he refuses to take them because he hates pills.  He's worried that he will throw up from them.  He's also worried about being "too happy" because if someone was to break in to our house in the middle of the night he thinks that he wouldn't be able to stop them if he's on medications.  
Like I said, I don't know how to support him when he's so depressed and angry.  
I like scratchinghead's advice: One day at a time.  Look forward.  Make a list of what we can do today, then get the mind away from it.  Tiny steps.  And if we can't do anything today know that we thought about and decided that.  
Now if my hubby would follow this excellent advice...
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315996 tn?1429054229
One day at a time. Look forward. Make a list of what you can do today, then get your mind away from it. Tiny steps. And if you can't do anything today, know that you thought about and decided that.
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3093770 tn?1389739126
This is absolutely appalling, I am so sorry you had to go through that.

I can't keep my mouth shut and if I would have been fluent in Spanish I would have told her what I think and I would have also said that I will get my lawyer in to establish if their process is applied to everyone equally

That looks to me like discrimination, wonder if you cannot get a pro bono lawyer from somewhere, must be something which can be done
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Avatar universal
So the clinic turned him away because he wasn't Hispanic.  I am not racist, but you had to be there to understand.  We walked in and it was full of hispanics.  We were the only white people that walked in.  The receptionists were both Hispanic.  Even when I told her it was an emergency and he was suicidal she snobbishly turned us away.    We didn't have our pay stubs with us so they turned us away.  Nobody told me I had to bring them with me!!! Their communication *****.  Meanwhile, they were letting other hispanic people in without their pay stubs, but we HAVE to have ours?  I speak Spanish fluently and I don't think that she realized that when she was letting other people in around us.  My husband isn't working, but they still wanted my pay stubs.  So we drive all the way home 20 miles away in a blizzard and back and they tell us that they're not seeing any more patients today that we have to come back on Monday!!!  
Do you see what we are dealing with as far as the medical system here in Utah goes?  It *****.  They are unprofessional here and don't know what they are doing.  One mental health care place turned him away because he is not a bum on the street.  Now this one turned him away because he isn't hispanic.  We watched the receptionist, while we were walking toward the door to leave, let the hispanic guy in back of us in for the next appointment.  Like I said, you had to be there to understand, and I guess you need to live in this area to know what I'm talking about. I am not a racist person and I have many friends of all colors and religions and backgrounds in my life.  
Sorry to vent, but some of the things that my husband has to put up with in his life and how strong he really is just amazes me.  I'm watching his care fade away and we both want to help that before it's too late.
We are on our way back to talk to someone from the ER from the other day.  I will keep y'all posted.
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Avatar universal
  Hi Talia~  It sounds like your husband needs to see a Doctor who specializes in digestive disorders, so this may be a G.I., but I'm not sure.  My G.I. only did colonoscopies.  But there is also a procedure where they can put a lil camera down the throat, to look at the digestive tract, it;s called an "endoscopy".
    Your husband doesn't even have to mention how he caught Hep C, but you may get better treatment, if you just say it was the Tattoos, which it may have been. We understand how/why your husband probably got it, and I probably got it the same way, but people that havent walked in our shoes can be ignorant.
   Only 20%  of the population may get cirrhosis, within 20 yrs of having Hep C, but it sounds like your hubs hasn't had it that long, so that is very hopeful.  Also, yes there IS a cure for Hep C, especially genotype 1's, the new meds were approved in May of 2011!!!   And, an even better med is on it's way to being approved, with the next 1~3 yrs.
   I was cured of my Hep C within thelast year. I started on Feb 7th, and did  28 weeks with Interferon, Ribaviran and Victrelis.  I found out 2 weeks ago that I still dont have the virus, and I havent taken the meds for over 6 months. The virus isn't going to come back, this is a medical fact, it is called, "Sustained Viral Response".   All the things that were wrong with my blood are now normal!  If you and your husband read thru the Social Side, and this forum, you will see that so many of us Geno 1's have just recently been cured, since the DA has approved the two new meds, Victrelis and Incivek. I feel like I have taken place in a Miracle
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Avatar universal
hi so glad your hubby is taking the librium and managing to dtay of the booze it cant be easy but he on the right track also i think he will start to feel better when he gets help for his depression at the moment i bet it feels like a vicious circle. Good luck with it all and keep us posted so we can try and give your family the support you are going to need, hang in there x
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Avatar universal
Agree with can-do-man. This is the best time in history to be treating Hep C. Depending on many factors (genotype and other factors) many people w Hep C have almost an 80% chance of curing their Hep C which means getting rid of the virus forever and stopping it from damaging his liver further. Another thing you should know is that how high or low his viral load is has no bearing on how much or how little damage the virus is causing to his liver. It's simply the presence of the virus in the bloodstream that damages the liver, regardless of high or low viral load. Glad he's decided to stop alcohol, hope his liver damage is minimal, and hope he can cure his Hep C soon! Tell him there is a cure now, and lots of people on this forum have treated and cured.
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Avatar universal
Well I agree with Bocep. What your saying does not sound like cirrhosis to me. Ulcers, Gallbladder, and other stomach related issues come to mind.Sounds like your husband took the first step in ending the booze.

Find a good doctor and taking care of this is the next step, he's still a young man and the odds are very good he can take care of this. not sure what you mean about not really a "cure" for Hep-C as really there is.

Read all you can and get yourselfs educated  and then getting all this behind you will be a lot easier...... And for what it's worth just about all of us have done stupid things growing up. It is what it is.

Best to all of you........ good luck
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Avatar universal
my husband has struggled with doing the treatment (obviously) and he struggles with the fact that there really is no "cure" for hepatitis at all.  He looks at these treatments as "experimenting on a guinea pig" and he feels like this medicine is just an experiment on him.  He's known people with Hepatitis C that did the treatment that still died and another that it made their viral levels go up.  He's freaking out, but for the first time since he found out he has the disease, is actually willing to accept that he has to do it.  BTW we are both younger than 38.  Let's just say I tell people I stopped counting after 25...
My husband is one of kind.  Someone you have probably never met and will never meet.  He was born different and has a different life story which led up to his problematic teenage years.  When he lived in California, he claimed kids out there were just "smoking pot" but when he moved back to Utah kids out here were "shooting up." He shot up for 2 years and quit because he wanted to go out with me and he knew that I didn't want to date a loser dope addict.  He quit cold-turkey and never went back to it again.  He never had a desire or a temptation to go back to it ever again.  In fact, drug addicts are people he despises to be around now in his adult life. He has cried to me so many times how angry he is with himself for giving himself this disease and ruining our lives (me and the kids).  He has told me so many times that if he had just one wish that he wishes he could go back in time and not shoot up.  All we can do is educate our own children on what not to do.
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Avatar universal
Again thank you everyone.  Thanks to this site, for the first time in 2 years my husband and I both feel like there IS someone out there that can relate.  In case your all wondering he still hasn't drank this week, although he has brought it up that he wants a beer, but hasn't gotten any.  Tomorrow I take him to a head doctor.  And we don't know if he has cirrhosis, but we know his viral level is at 6 million.  I don't know anything about stomach pain and it being related to Hepatitis C, but I know what he tells me, and he explains to me how his liver feels like it's twisting in a knot, like wringing out a wet rag.  He dry heaves every morning when he wakes up, or all through the night on bad nights, but nothing ever comes up.  He has no appetite - I can hardly ever get him to eat anything.  Since he hasn't been drinking beer this week, he's been drinking a lot of cabana lemonade (if this is harmful to his liver we had no idea), but not eating much food.  I've looked up diets for Hepatitis C and I've started buying those foods for our family.  I understand fresh fruits and veggies, proteins (but not red meat), spinach, and dairy are good for this.  When he does eat, he eats healthy.  Any      
Helpful - 0
419309 tn?1326503291
You received good advice from the great people here... I hope you find the support and impetus you need to help yourself and your husband make some forward movement in your lives.  Whatever the two of you have to do... you have your children to think about, and hopefully your husband will find the strength and courage within himself to care about them, you, and himself the way he should.

Whether or not he has cirrhosis, as others above pointed out, he will get to end-stage sooner rather than later if he continues on his current path. The pain and misery and depression he's experiencing now is only a mere glimpse of what end-stage will do to him, and to you, and to your children -- and then some.  Untreated, accelerated hepatitis can kill... and the pain and suffering on the way to that unspeakable death... will make what he and you are bearing now -- mentally, physically, emotionally -- simply pale in comparison.  

Your husband can choose to live and love and fight the ills life handed him, or he can choose to wallow in his pain and pity... I hope he makes the brave and right choice while time is on his side. He's fortunate to have a caring, supportive spouse by his side who loves him, and I hope he realizes that ... so many don't, and have to go it alone.  

The hep c treatments that currently exist and the medical interventions available today are such that your husband has a better opportunity now than ever before to beat this disease, but only if he chooses to seize the day. My husband was diagnosed with hep c so far progressed that there was precious little opportunity to save his life... there comes a point with this terrible disease when no amount of love, support, or work or will can make any difference... hopefully your husband realizes he still has a chance to save his life before it's too late for him.  

Welcome to the community. ~eureka

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315996 tn?1429054229
I like what  BoceprevirGal says about "sticking around and we will help".
I know this forum has helped me.
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3097131 tn?1357084881
Go to the Hepatitis Social Community Forum and read the one that says Treatments by Creewoman..Hope that helps him decide to get help and to not drink..Please read it.

Country
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3097131 tn?1357084881
This is in the beginning of the Post...
  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

I was mainly stating if Hep C wasn't treated it will eventually turn to Cirrhosis,as I have done..You and I pretty much said the same thing in our post,just two different perspective's.. LOL.
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Avatar universal
Hi Talia~  I still dont know why everybodyis responding to this post, like your husband has cirrhosis, has there been a biopsy? Like I said, stomach pain is not a symptom of Hep C~  He may be having an anxiety attack, and like I said, stomach ulcers.
   The current Treatment out right now, with Interferon, can frequently cause anxiety and stomach problems, and the patient has to be mentally stable, enough so, to take the meds exactly on time, without ever forgetting, due to drug tolerance issue.
   If your husband does NOT have cirrhosis then he would be better off either waiting for the new Interferon Free treatment , which includes sofosbuvir, and hasn't been approved by the FDA yet, or he could try participating in a Govt Clinical Research Trial, which is Interferon free
   If your husband actually does have cirrhosis, from his Hep C, then I apologize for not seeinghtat anywher on this post.
     Has he had his Hep about 20 yrs now, as in...he shot up when he was 18 yrs, and he is 38 yrs now?  It is hard to help when we dont have these pertinent facts. I did read that you are in Utah, and I've spent some time there. It would be a very difficult place to find Hep C Treatment, I imagine. Oneof these Studies may be yiur best bet.
  It sounds like a cycle is happening: your husband is having panic/anxiety, concerning his Hep C...he drinks to self-medicate his worries, he becomes more worried, because he drank, around and around he goes.
   Stick around here, and we will try to get help for him, there are many knowledgable people on here~  
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Avatar universal
You're absolutely right Country that was my first post. I am a tenderfoot. I apologize if I came across as not having much sympathy, but that is the furtherest thing from the truth. Didn't have anything substantual to contribute so I added what I thought might help. Oops! You people are doing a great job helping Talia and others and I am very impressed. Keep up the good work and best of luck to you and family, Talia.
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3097131 tn?1357084881
I would like to say you have got some very good advice from some people that has been in your shoes and your husbands also.As for the big1947 up there,you can tell he hasn't been on here very long and not much sympathy either.I would like to help you out..
Find you a transplant center closest to you.Go to the Social services Desk and ask to speak with someone about getting on the Charity Program and get you an appointment with Hepatologist.They will take it from there and it will make him feel better also. Hep C takes decades to kill you. He needs some test ran by the Hep doctor to see how much damage he has and to see how much liver is functioning.I have Cirrhosis and have been treated for Hep C,do not know yet if I am undetected.You can do all the foot work as ( I call it) to get him where he needs to be. Once you get him in they will get him into treatment for the HepC , all the Clinical Trials are free for treating.I also want to say that HepC tx is nothing like Chemotherapy and now days they have hardly any side effects.Here is a link that will help you get started...Transplant Center - - University of Utah Health Care - Salt Lake City ...
healthcare.utah.edu/transplant/
University of Utah Health Care's Transplant Center offers patients and families comprehensive treatment and care for all transplant related diseases and ...
Hope he gets the help he needs..

God Bless you all.
~Country~
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Avatar universal
If his gastroenterologist prescribed Tylenol 3 for him, he either needs a new/better gastroenterologist wh is familiar with hep c, alcoholism, and liver damage, or he needs a hepatologist, preferably the latter. Usually you will find hepatologists in liver care clinics or liver transplant centers located within university based medical centers. His next steps should be alcohol and prescription detox, a thorough eval by a good hepatologist, and depending on sobriety, later treatment for Hep C. As noted in other posts: drink water, reduce sodium, no iron supplements, increase fruits and veggies, no over the counter or prescription meds unless approved by hepatologist, and no alcohol or recreational drugs.
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Avatar universal
You mentioned that a doctor gave him Tylenol 3. Tylenol is very damaging to the liver for someone with Cirrhosis. I'm not sure about the coedeine in Tylenol 3, but I do know that Tylenol damages the liver further in someone with cirrhosis and can even cause the liver to fail. We need our livers. Any doctor treating your husband for anything at this point should be talking to a hepatologist before prescribing anything.
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Avatar universal
Just a thought. After reading your posts it seems a possible avenue to follow would be presenting your story to the Dr. Phil Show. Having two children affected by the situation would be helpful when his staff make a determination. I watch the show and it seems that your husband would be a qualified candidate. Give it a shot. Can't hurt to try. Good luck!

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Avatar universal
  Oh, I didn't answer your question...hmmmmm. All my husbands were alcoholic or addicts also, and it made me miserable all the time.  An alcoholic has to make the decision to stop, them-selves. I did try everything though, but nothing worked.
   I did support myself though, by going to Alanon meetings. I learned that I didn't have to be angry with my husband all the time, because it was killing me, the stress, and it was unfair to my children.
   Alcoholism is a tricky and difficult disease to treat~
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