I am here because I am scared to death because my husband of almost 20 years has been diagnosed with Hep C. We of course had no idea, he is a healthy 44 year old man, works steady and a physical job. He has always drank quite a bit of beer, usually 3 or 4 (maybe more) per day and a 12 pack or more on the weekend. Well mid September he was getting ready to mow the yard and comes in and says I dont feel really good, I turn around just in time to see him fall into the wall and start to pass out. I jump up and catch him and help lower him to the ground and he has a full blown seizure. Never before has he had this. He drank 2 quarts of beer the night before, but we had been running erands all day and he was fine.
Well he spent 3 days in the hospital and they did every test you could think of CT, MRI, EKG, EEG, etc, etc. The only thing they told us was that his CT or MRI showed some white matter demylenation and the did say one side of his heart was a little larger or thicker, but that could have been because he played a lot of sports and worked out a lot when he was younger (probably not, is what I am thinking). His blood pressure has been up the last few visits in the 140/90 range I think.
He had several surgeries when he was a kid and that included one case where he received blood. Unfortunately after he left home in the early 80's he says he stupidly was experiencing everything he could after being so sheltered and did try IV drugs a few times................sigh. He tested positive for Hepatitis he said in like 84 (we met in 1988) but I guess they didnt know and he was young, recovered so didnt worry about it. When we met I did learn that he had had Hepatitis, but I didnt worry, my brother had had Hep A before and he was fine.
We have also talked about other symptoms and I mentioned to him that "you havent had blood in your stools or anything" and he said sometimes...but he thought it was just hemroids, but yes sometimes in the stool/toilet. He has drank beer almost everyday that I have known him and I think it has gotten worse since we moved out to a rural area. I think he was drinking more than we knew. He has also changed a lot over the last 5 years personality wise. He used to be very easy going, never really got upset. After my weightloss (had gastric bypass, lost 200 lbs) he seemed to change, be more moody and just didnt seem to be happy or have fun. I kept telling him he seemed like he was in a bad mood all the time and didnt enjoy being around me and the kids. He could never see it and still doesnt see it when I point out he is over reacting. And the last year or so has complained of muscle aches and been more tired, taking naps etc. I figured that it was because of all the changes in me and my weigtloss etc and just getting older. Now I am beginning to wonder. He also seems to take longer to ask questions during conversations, I noticed this about a year ago, was like I always wanted to speed him up.
His last blood test showed
ALT 101 ( up from 72)
AST 58 (up from 47) says he wasnt drinking, but I reminded him he had had several beers (that I know of) in the preceeding weeks.
HEP C ANTI BODY 78.18 Positive
Viral Load 2,810,000
So, we have an appt with a GI Dr. on Nov 13 and and ultrasound on Nov 19th. I am really getting scared............it seems like this isnt looking good at all. I am also feeling very alone in this because he doesnt want to tell anyone.
I am scared, very scared, but I am doing my best to be there for him. I was the one to tell him to tell the Dr. he had had Hepatitis before when they started talking about his liver because of the seizure and drinking.
Any thoughts........am I reading too much into this. I dont know what to do. I keep researching and looking for more information and I get the same stuff and is scares me to death.
Thanks, looking forward to some support and I do apologize for the long post.........
Nothing about your husband's liver numbers look indicative of advanced liver disease, which is a great sign. Albumin is very good at 4.6; .7 bilirubin is excellent; platelets at 261,000 is probably very normal, maybe just a tad low but nothing to worry about. Based on these numbers I would not expect that he has very advanced liver disease.
He definitely needs to stop drinking completely. His mood could probably benefit from not drinking, as drinking after 20 years of hep c can make you really tired.
He may turn out to be very lucky to have caught that he has the hep c before it has done a lot of damage to his liver. I sure wouldn't be that worried about his liver at this point. I would guess his damage is either mild and/or reversible with abstinence and treatment.
Thanks for responding. You dont think the seizure and loss of white matter in the brain are a big concern?
He has stopped drinking and unfortunatley that has made his mood worse. Now he just seems "out of it" most of the time. I have to repeat things at least twice and he is looking right at me. Very frustrating and happens a lot lately. He cant find things, so of course someone stole it, couldnt be he misplaced it. Etc.
We have already been having marriage problems before this came up, so now it is hard to be patient with him. I know that sounds bad.
I agree with BT, nothing about his liver numbers indicate a life threatening liver condition. He is relatively young and strong and he may well respond even to the currently available treatments . Even better, more effective treatments are in the pipeline and will be available just in a couple of years. His seizures are not typical for hepatitis and probably are indication of something else, the visits you scheduled to doctors and tests may clarify what is going on.
We all were scared when we learned for the first time about this illness, but learned to leave with it.
Things will improve, just take one step at a time and don't be scared.
Thank you as well for your response. It is reassuring to hear that his numbers dont appear too bad. I guess I just worry so much because of his drinking along with the Hep C.
He only had the one seizure, thank goodness.
I hope he gets more invovled. I gave him stuff to read, but so far he hasnt looked at it. He wouldnt ask questions so I am going to his appointments too. I dont mind being there, I want to be, but I need him to actively participate too. Does that make sense.
Thanks again to all, this is so hard. I have been reading for about a week and finally decided to post something.
Your husband is probably ignoring the situation so he doesn't have to stop drinking. Considering that he has been drinking everyday for over 20 yrs. I know I was reluctant because it is such a social thing. I found out it's OK to be the sober one, except I'm always the designated driver.
Sorry about the tangent, my heart goes out to you because you can't fight this disease for him. He has to get on board and take it seriously esp. if he is so run down. Good luck, make sure you have support for yourself.
white matter and seizures, I've been there, been there and been there some more. start tx, the white spots are from various causes, but tx for hep c may slow them down. as they are mostly stoke and/or autoimmune....somewhere I have a list......
seizures,,,,was he taking any pain meds while doing the drinking??
has he been to a neurologist yet?
they cannot always tell you what they are, only in some instances will they say for sure. but it's worth a shot.
I'll find my list, maybe.
ok, there does not seem to be much evidence to support hep c being the cause of demylination but then again, anything that kicks the immune system into high gear means more auto immune stuff will happen. sometimes enlarged heart chambers will return to normal on their own once a disease or stress has passed, but not always.
you need to get IGM test, and see a cardioguy and neurologist.
I'm just treating for the hep right now, because if I treat for what they are guessing at I'll be a chemical soup. Hopefully one less virus will help other things to normalize.
If his processing has slowed down, or speech, I'd definitely suspect a small stroke....the mind looks for words or how to form them and has to relearn.
In any case, folks can live with these things....I've got 13 and they are all dime to quarter size...and still in here...or at least........was a minute ago :))))))))) get your referrals right away, and above all, he must stop drinking...oh and hep C can make you cranky, not just stroke....he may need antidepressants if that continues. especially while doing treatment for the Hep, it can get rough for some.
When you see the doc on the 13th he'll probably examine hubby and feel around to see if there is any obvious not normal feel around spleen, liver and extremities. To get the complete picture he'll probably suggest a liver biopsy which is not as scary as it sounds - in a day surgery kinda place they'll plunge a needle and take a core sample. Although he has a u/s scheduled, the biopsy is needed. In all that testing he's already had did they ever mention the genotype of the hcv? There are several different sub-types of hcv which may matter later on. Don't assume that all his other stuff is connected. But, needs to get in a more healthy mode. Is he overweight? Try to be in the room when doc examine and talks to hubby so that you both hear the same thing and ask any questions that come up. For future reference, get copies of all labs results and reports, sounds like you have some already, but make a collection of all of them.
Ya know when i was 16 i had a boyfriend that i got what i thought was hep a, some tell me it was hep b all i rememember is i was at a party went to bathroom and my eyes where real yellow, went to doc next day they put me in hospital for over a week with iv's, ya know i dont remember alot about it because i did drugs when i was young. I happen to tell my doc last year i once had hep a and she sent me for blood test and thats when i found out i had hep c. Does this have anything to do with the hep i had when i was a youing girl??? This is all so hard for me to understand, i know we shouldnt worry about where we got it or when but dont yall wonder about it at times?
Unless A or B were specifically diagnosed when you were young, the yellow phase could have been the acute stage of C. But that might be dependent on when you were doing drugs and if they were of the IV variety. Did the docs, thru testing, ever confirm that you had A or B?
Thank you so much for taking time to answer my questions. In all my research I did find some reference to amoninia build up front not properly cleaned blood causing damage to the brain. I may have not explained myself well. He has stopped drinking now for about 2-3 weeks that I know of and after the seizure he only drank a few times. He has asked me to buy beer several times and I refused, so that part we seem to have addressed.
I know his numbers dont seem extreme, but I have read that in advanced stages with alcoholics that their numbers can flucuatue or not appear that high. So that combined with the seizure and loss of brain white matter (demylenation) has me thinking this could be very serious.
He is not overweight. 6'2, 210 lbs and works out fairly regularly.
I am going to all his appointments now and signed a form so that I am his "official" representative so they will give me all the test results etc. I also got copies of all his lab tests and have started a big folder. We have HMO, so I know I have to be actively involved or things wont happen.
I dont think he has had a stroke, they scanned everything and had him on a heart monitor in the hospital for 3 days. He just seems to take longer when asking questions and his questions dont always make a lot of sense, like he loses his concentration half way through.
I hope he does get more involved. Like I said we were having some problems before marriage wise, nothing real serious just kind of growing apart and then with his change in personality and my losing 200 pounds. So, now with the attitude he is taking I feel like I am his Mother and that is not good. We have been married for almost 20 years, so I will see him through this, but if I cant get him to own his situation and realize that he needs help, then I dont know what we will do. Right now the hardest thing is he is so grouchy. Never anything positive or supportive.
You can't let him ignore this so he can keep drinking. There is nothing that will cause him more progressive liver damage than alcohol. He is literally pouring gas on a lit fire right now. It will be hard for him but once he's in treatment he probably won't want to drink as much anyway. Nobody really feels like doing that one.
When you get to the doctors ask him right away for an anti-depressant. It is VERY common generally they advise alla of us to be on one in advance of treatment becasue the meds can cause severeee depresion. TAking them in advance wards that off. I think he needs them and has been self medicating himself for quite some time with all that booze..it might really be one of the things that could help him.
Did you post what genotype he is and I didt see it? That's an important ;piece of info.
Make the appointment for his liver biopsy RIGHT AWAY - at least then you will know how far his damage has progressed. Maybe that will help it all sink in to him that he has a disease that can kill him once he hears that his liver really REALLY is progressively deterioratedd. Unfortunatly it can take 20 years to get to a stage 2 or 3 amount of damage and then all of a sudden in only a few years go straight to cirrhosis. It's very important he eralize these things. With all the drinking on top of the helpC and then both working together ...well it could lead to death pretty quickly.
We dont know his geno type. I have copies of his blood tests and they didnt test that, I am sure the GI doctor will order that and I already planned to insist on a biopsy in addition to the ultrasound.
Luckily as I mentioned he has stopped drinking now. He was drinking a few and when I went with him to his last appointment and he saw that his ALT and AST went up. He looked at me confused and I pointed out that he had drank since his last blood tests.
That is my biggest fear is that the silent Hep C for over 20 years combined with the drinking has caused serious damage. I know it is easy to make certain symptoms fit a situation, so I am trying not to read too much into all this, but the fact that he has lost white matter (demylenation) scares the hell out of me. The Neuro Doc said that they usually only see that in very old men.
I don't know anything about the neurology part of your hubby's problem, but my husband and I both have Hep C- and personality-wise, our hubbies sound identical! My husband does not drink, but the crankiness, the "huh?" kinda thing during conversations, the lack of enthusiasm - yup, I hear ya. And the denial is very hard- I often feel like I'm the only one worrying. It's great that you are right in there at his dr's appts, cuz that way you can advise him and know what's really going on. I've let my hubby go to the dr alone and he couldn't tell me one thing that was said when he came home. Worse than the kids... But really, his blood counts look good. I'm not saying he probably has no damage, but I'm sure his liver is good enough to carry him through a good long life- if he stops drinking and does treatment- provided that is what's recomended. If he is only a stage 1 or 2 in liver damage his doc might tell him to wait a couple years for the new treatment coming out. I know also, you mentioned amonia building up which can cause dementia- this only happens- as far as I know- in advanced cases of liver disease. And it really doesn't look like your hubby has that- his platelets and albumin are awesome. Wish my hubby's were as good! But I would defintely emphasise the NOT DRINKING part to him, rather than comforting him with how great his bloodwork is ;). It would be great if he could go on an antidepressant. I've tried to talk my hubby into it, but no go.
Try not to be so scared- I know it's hard, but it sounds like your husband is in pretty good shape liver-wise. He just needs to stay off the booze and deal with this unfortunate reality- but it's not the worst thing that could happen. I'm no expert medically- there are many much more knowledgable people here- but I just wanted to let you know that you're not all alone in your situation.
Best of luck to both of you- keep us posted!
FIGuy Yes the doctor did say a or b i just cant remember i was stoned all the time and 16 years lol, i wish i could get my records that far back from when i was in the hospital. All i know it that they made all my family have shots when they found it in me. I always thought it was a but some in family years later told me they thought it was b......who knows.
I know thos frustrations. Illness and loss of a child can both rip marriages to shreads. we never think the "for better or worse" will get that worse!!!!
My last marriage ended after I nursed my hubbie back from extensive cancers and surgeries, only to have him tell me his cancer was my fault!!! (forget the fact that he refused to see a doc for a lump for years that grew to grapefruit size, forget I begged him to get seen a dozen times and was told to shut up and not ever bring it up again....when all was said and done it was my fault he didn't seek treatment.I see now that was his insane depression......Unfortunately I took that very personally then, it ruined what was left of our relationship.
Now in hindsight, I see this is what fear and cinical depression do to people. Men in particular seem to have more issues around admitting they are sick and/or seeking help. they are supposed to be strong....so they'll sit thinking morose thoughts all day, and say fine when you ask how things are....Perhaps part of this is they are trained to be tough, perhaps it's alll the war stories/experiences have them fear knives and doctors far more. who knows.
I'd say since the tx will give him sleep probs, it does most of us.... and this will make him more snappy/cranky/foggy you may want to consider a mild anti-depressant that helps with both the sleep and the depression. Trazedone doesn't make one speedy daytime, it makes one mildly drowsy, and so is given at night......come morning you just feel more calm all day...... it may be enough, a drug like this one.
brain fog is something heppers get and no one knows is this from the white spots on the brain many have, or from something else. Based on me I'd say cognitive abilities returned when I added HGH to my treatment (it helps the body repaire) see my thread titled "Know This" for that info.
and also getting rest is crucial. A mild sleep aide like Ambien may be needed. If he has had a stroke or has white spots it will affect the GABA levels in the brain, interferring with ability to go to sleep. So I use a 2 pronged approach for sleep, HGH and Ambien...your doctor ca help him decide what he may need. He needs 10-12 hrs minmum sleep while fighting this virus. He needs to dream as 3/4 stage sleep is when tissue is repaired. the deep sleep triggers repairs throughout the system.
you see a lot of folks decline as their family moves forward and they can't. they are stuck feeling useless with too much malaise and exaustion to do much about it, or even care. Imagine not shaking a bad cold for 10 years....it gets old. Plus is he was medicating with the wrong thing...booze...that was shooting him out into symptomville as in cannon style,
he sound like an excellent candidate for antidepressant therapy. It will return his seratonin to more normal levels, and may help him to face each day as an overcomer. It may even improve his response times. Hep c can cause clinical depression, the tx itself can exasserbate borderline cases of depression into full blown ones. S
o if he is cranky all the time see if you can go into the doc with him and say gently, he's not himself lately. you can state that you think he's masking a lot of suffering he's feeling both physically and emotionally and are concerned that this tx is just too hard for him to handle alone. You don't want to see him decline more, to be in such constant misery....stuff like that.
Just be sure to avoid saying to the docs, "I think he may harm himself" because they won't give you anti=deps if it's that bad while on tx, if someone mentions suicide, patient or friend, it's grounds for them to discontinue tx. So be careful how you word your concerns to doc and hubby.
the docs have to cover themselves legally so want to pull back all the depression cases, but not risk the suicides,,,,so we must walk a fine line in how we ask for help and how much we divulge,
there are some people who go on anti-deps but are so far gone and negative anyway, that it does just bring them to the courage to off themselves. so there is good reason to asscess carefully does nubby like being depressed/want to be this way/ or just can't help himself right now hes so wrung out. One way you do treat, the other way, could be dangerous to all.
you know him best so take time thinking and praying this through.
I really think you may see a decent change in him though if he gets on this for the duration of tx. right now he probably feels all alone, and about to be deserted by a foxy wife who he can't keep up with, and a whole lot of God knows what else is filtering through there every day. the seratonin gets used up by all this stinkin thinkin, leaving the person in a heap on the floor. So the uptake inhibitors keep seratonin from being destryed giving them a better chance at a healthy attitude and some energy and jest for life.
they shouldn't be used for every teen breaking up with a BF, but for those verging on clinical depression, it can literally be a life saver. talk to your doc about this soon, there are some of these drugs that are not hard on the liver....best to see the doc who knows which these are.
hope that helps/
Wow, thanks for the great info. I do think he needs to take anti-depressants so I will have to find a way to talk to him. I did take anit depressents for a few years and I know he saw the difference in me, so maybe he will listen.
I agree, you say, for better or worse, but no one ever really thinks about the worse. I love him and as I said, I will be here for him through this and hopefully we can be stronger for it in the end. I have sent a message to a medical friend of mine asking for a reference for counseling, I also know first hand that support groups are crucial. I never would have made it through the weight loss etc without them.
We haven't even discussed treatment with the doctors yet, we dont see the GI doc for a few weeks and his Primary care was a joke, he couldnt remember half of what we told him, scheduled him for an appt and then when we get there he says, "your back again"? Geez. I told my hubby right then that no matter what, we were changing to someone else.
I think I am also struggling with the grieving process that this change is bringing to our lives. Our kids are just getting old enough that we could go out and enjoy some time playing a few darts at a local bar or just going to Rocky Point with friends. I dont drink much, but I really did enjoy a few drinks once in awhile and now I feel like I cant go anywhere that serves alcohol. How can I have a drink when he cant. I feel (and I feel guilty that I do) cheated because now we have so many restrictions on what we can do. Its is so trivial and selfish, but I get mad because now we cant be carefree as we were before. Have to think about condoms (geez I'm 42, I dont want to have to worry about this) cant go out and watch my brother and his friends bands play because they play at bars and well. I fell like **** because I am even thinking about these things, but truth is I do and I get mad because everything has changed now and thats not fair. And now I am worried about his health and I still have to get tested! Although I am not too worried about myself. I was a regular blood donor until just a few years ago and I get a full blood test done every year to check because of my gastric bypass. But as soon as we know whats going on with him, I will get tested. I was thinking of ordering a test online because I worry what insurance will do with the info if its in my file that I tested for it.
Anyway, thanks again to all for the responses. It REALLY does help.
not a problem, advice is free, just glad to not be too foggy to give some!!!
just do get a GP who cares, mine was no help either, left me undiagnosed for 10 symptomatic years....had to figure and learn it on my own, and would still be undiagnosed if I'd let her run things.
hmm I was exposed to a lot of ammonia for years in my business, wondering now if this is what did it? see we all learn from each other.
you are right, for your own sanity you need to know and I would recommend you ask for both tests at the same time. both a initial AND an RNA test, that way, they draw enough blood for both.
I did this for my son and husband's testing. Hubby came back negative, after 10 years together, phew,..son cam e back positive for antibodies, but because I'd insisted on the RNA as well, they ran that at the same time and he has no detectable virus, meaning he was probably exposed at birth and cleared the virus on his own...(20 percent do).
you need to ask for this method because otherwise if you do test positive for antibodies you are stuck waiting 2 more weeks to get back the genotype/viral load or lack thereof results.
It was just more of a relief to hear, yes he's pos. for antiB's but neg for virus all in one day.
enough with the handwringing already.
you have a good very good chance of being neg. it's rare not to be in monogamous marriage. Glad to see you are sticking it out...it's a hard row to hoe, I know. Nobody says life will be easy for any of us, but I think if you can get hubby to see the glass half full somehow....faith maybe? and with tx hep and pain and worry comes the jangled snaps....just keep reminding yourself this is not of his choosing and it can get better.
I think caregivers get very depressed also, and of course then have all the attending guilt, because they do resent but know they shouldn't.....but remember that is perfectly normal to go there.
No one likes suffering, either to bear it, or see others in it, or be on the receiving end. So it's normal to have some thoughts that are negative or throw in the towelish, I'd just try to remind yourself, this is hard, and everyone who has ever gone through it has felt all the same things you are feeling.
then take a breath and give yourself permission to want it, and pray for it to change.
Hubby said it best, something he had never really learned was unconditional love, but being forced and tested into it, he finally has come to know what that means. Just like you don't throw a sick child away we have to look at this as a similar situation. And yes it means you will have to be as much mom as wife, but if the shoe was on the other foot....you'd still want that cup of cool water right?? Be strong Kara, we all know in here this is not easy.
Thank you so much. You are right, this is very hard. I thought I loved him unconditionally, I guess now I am having to prove that, (to myself more than anything).
It just sucks. This is the crowning blow to a year full of hard times, so I guess it makes it that much harder.
I think one of the other hard things for me is sex. He still feels the need and desire, but all I can think of is Hep C. How can I be "in the mood" when all I can think about is that? How do I get past that and worrying about...."maybe this is the time he will infect me?". Kind of kills the mood.
yup mood killer....and there's no viagra cure for this kind either!!
I wish I had your problem!! I can't get my hubby to take the risk seriously since it is onlya 1-2 percent chance of spreading this way. That's a small chance, and he's riding on the "made it 10 years theory", but it bothers ME that the small chance is there.
It just may be a "what's more important issue."...one persons horriness, vs. anothers constant concern.
The last thing we need is for all affection to leave...but there are safer ways to express things,
lots of safer ways.
I think he needs to respect what your choices are concerning all this. After all, it is you he's asking to play roulette with your health. Shouldn't you have the final say as to black or red????
do what you have to do to feel safe.
we may get in a car accident, statistically theres a chance, but we don't all give up driving....
yet most of do wear safety belts if you follow.
I think if your hubby is treating that'll be great because it means in a year or 2 he may be SVR and things could return to normal.
In the mean time, because we aren't there, and I'm the one who read up and knows I could spread it.... I'm having to insist on protection and safer kissing etc.,
he is resisting and not concerned for his health...go figure..
It could be a guy thing, the "one eye rules".....but it's impossible not to be concerned you'll spread it if you care for people and I do think that precaution is the more caring choice. Some of the time though I think denial is part of what happens when you first learn of this...and either person can go there.. me, I keep thinking how much agony it's been in getting to the stage I'm at, and how horrible it would be if I go home to God, and then my spouse had to face it himself and all alone to boot.
you just may have to do all the leading on this one though, it's common to many not to fully process all of this and it takes some time for things to sink in.
It doesn't help either that the docs primarily say it is not spread through saliva or intercourse. However, women can bleed a little during intercourse, and anyone can have bleeding from gums, so that's not a 100 percent true statement.
there are people who have the disease who have no known exposure, meaning no transfusions, drugs, straws or rough sex...and yet, they got it somehow. My guess is there's still some grey area and room for caution based on that truism.
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