My son is newly diagnosed

[hepcson]

My son 30, has battled various drug addictions since about 18.  He was just diagnosed with Hepatitis C.  He lives in Florida, and is uninsured. There are very few treatment alternatives for uninsured patients. I am a registered nurse and unfortunately my only exposure to caring for Hep C patients has been when they are very, very ill.  I know very little about the acute and chronic phases.  

He lives about an hour away, because of his addiction my relationship with him is not one of trust.  I have not seen him since he states he was diagnosed.  He tells me he has horrible headaches each and every afternoon.  He states he does not take tylenol or aspirin.  He states he takes 800 mg of ibprofen with no relief.  My questions are:
1.  The severe daily headache--Does this mean he is acute or has moved to chronic?  Does it mean anything else?
2.  What is the best thing to do for the headache?
3.  Should he expect to feel better, or will he feel this way all his life?

4. He has shared needles with his girlfriend many times.  She tested just after him.  He tells me he had a high viral load and she tested and results for her were normal.  How can that be?  She believes she is in the clear---I told him that is not so.  I read it can take up to 26 weeks for the virus to appear.  Is this true?

[carol411]

I've never heard headache as a symptom of Hep C.  Many of us here had the disease for years or decades and never knew it until we went to the doctor for some other reason.  There are usually no symptoms until the disease is quite advanced and the liver can no longer do its job.  So there is really no way of telling whether his Hep C is acute or chronic.  

Acute hep c is when one is first exposed.  20% of people fight it off with their own immune system.  If it persists for over six months it is considered chronic and the only way to be rid of it is to go through treatment.

Was it the headaches that motivated your son to go to the doctor?  How was he diagnosed?  If it was an just an antibody test there will need to be further testing.  Anyone who has been exposed will be positive for antibodies for years, perhaps the rest of their life.  But it takes a HCV RNA by PCR test to diagnose an active infection.

Given your son's history, there is a good chance he does have an active infection, but the headache is likely another problem.  He should be careful about ibuprofen and Tylenol and never exceed recommended dosages because both are metabolized by the liver.

My heart goes out to you.  You are in a very difficult situation.  Beside your question at the top of the page there is a box for "search this community", type in headache, or anything else, and you will find lots of discussions.  Or just keep asking questions, there are many helpful people here.

I hope your son sees this as a wake up call for your sake as well as his own.  --Carol

[Bill1954]

I agree with Carol; your son should probably seek additional PCR testing for disease confirmation. You mentioned his viral load above, so that combined with his IVDU unfortunately makes him a very likely candidate for active RNA infection.

Regarding his girlfriend, yes, around 20% of patients that are exposed and develop acute infection will spontaneously clear the virus with their own immune response. This percentage might be higher in young women with protective hormones, although I’m not sure this is fully understood. It’s important to note that prior infection does not confer immunity, however; unlike Hep B.

“I read it can take up to 26 weeks for the virus to appear.  Is this true?”

It can take up to 24 weeks from exposure for seroconversion to occur; this is the process of developing antibodies; medicine uses antibodies to screen for infection.

If indeed your son is infected with active HCV RNA infection, participation in a clinical trial might be appropriate. However, more immediately he needs to manage his addictions and get clean and sober. Doctors won’t treat active addicts/alcoholics and generally require the patient to demonstrate a period of sobriety before treatment is initiated.

Good luck with all this, and welcome to the discussion group,

Bill

[willbb]

Sorry to hear  about your son"s problems. I agree with Carol that it would be unlikely that his headache problems are in fact a symptom of HCV,as most people are asymptomatic for many years and  very often decades.

The more immediate problem, it would seem  is for him to be able to address his drug addictions so that he then could address the HCV from a much better position physically and physiologically.

Hope that helps some...and stay in touch here, there is good support for you.

WILL

[GSDgirl]

As for the headaches, I had headaches for years but it had nothing to do with Hep C.  I finally found a really good chiropractor and with the proper adjustments my headaches subsided.

As said above a clinical trial is his best bet for treatment but he must be clean.

Good luck

[hepcson]

Wow! Thank you all for responding with words of wisdom and empathy.  A few people asked what made him get tested?  Early fall last year he spent about 8 weeks in jail, for theft (feeding the addiction).  He told me, that going to the public health clinic was the first thing he did when he got out.  So something was up and I do not have the entire story. He said the county clinic told him he has Hep C and his HIV test was negative. He was in an inpatient rehab about three years ago and he said they told him he had really high liver enzymes then.  He may have had it for years.  He tells me he is clean and has been for 5 months and that he realizes the consequences and will never use again.  ( you have no idea how many times he has told me this, whenever a crisis related to using happens it illicits this response)

He is "on the list" to be called for a clinical trial at Shands Hospital, Gainesville.

Many people state he needs further testing...How does one get testing when they have no insurance? He lives in Levy Co. FL.  One of the poorest counties in Florida.  I have a friend that is a Licensed Clinical Social Worker and she checked available resources there and found none.  The only way he will get testing is if he would be admitted to a hospital through the ER.  He asked me if I would pay for him to get interferon. I can't and won't.
He is currently on Paxil and another medication he says starts with am...(certainly helpful information).

Actually how, he acquired is of no consequence, he has it, it is history.  I love him as my child.  I have no respect or trust for the person he has evolved into.  I have been on a long emotional, chaotic, and financially stripping journey with him. I have no  more for him.  I can offer him education about his disease processes.  He has two chronic life long diseases--addiction and hep C.  Both of which were completely avoidable with good life choices.  

I feel so very bad for people that were infected by transfusion before our blood sources were safe.  My assumption is, and I may be wrong, that many of the people that subscribe to this site have traveled the very same road, either themselves, or with someone they love. Addiction is hell, and as a society, we have made the choice to spend little money on researching it or developing true treatments.  When a person becomes an addict, they fall into the forgotten healthcare population.  That is until they get into trouble because of the addiction and the end up in a rehab that has used the same unsuccessful treatments for years or in jail with no treatment.

And so, there's my soap box and I will now step away from the podium......Thank you all again for responding.

[GSDgirl]

In all due respect it does not matter HOW someone gets hep C, be it the transfusion or the past transgressions of ones youth.....25 - 30 years ago.......the bottom line is that it is a disease that many, many people have.  Just because someone experimented 30 years ago doesn't make them a bad person.  Way back when it was not known about.

Many hep C'ers have done very well for themselves.  Your opinion just rubbed me the wrong way.

[willbb]

Talking about lack of funds and avail. of testing for HCV  and funds for interferon at this juncture is a moot point. Your son needs to address the "illness " of addiction before he can even begin to think about  attending to his HCV.


You said:
Actually how, he acquired is of no consequence, he has it, it is history.  I love him as my child.  I have no respect or trust for the person he has evolved into.  I have been on a long emotional, chaotic, and financially stripping journey with him. I have no  more for him.  I can offer him education about his disease processes.  He has two chronic life long diseases--addiction and hep C.  Both of which were completely avoidable with good life choices.


Whether  or not the "illnesses he has "were avoidable "or not is really inconsequential,,I believe what is more important is what will the people that care about him do to help him with his" illnesses" now..


You said:
"When a person becomes an addict, they fall into the forgotten health care population.  "

So  true...thats why  it is so important that people that have NOT forgotten him never stop trying to help.


This is not an addiction forum,  so I may have stepped outside the box here ,however your sons" illnesses" very often go hand in hand  and I hope he gets all the help he can to beat both.

All the best

WILL

[carol411]

I don't think hepcson intended to offend.  I think she has watched her son trying to destroy his life for years and has an understandable horror about what addiction can do to people.  Years ago I made some bad choices, but I don't like being around people now who are on that road.  There is too often a bad destination at the end.  

Hepcson, I hope your son is clean, but if he is hanging out with the same people it's likely he will slip.  Why not look into trials further away?  If he's serious about wanting a different life style it will help to not be where the old life style is.  And Will is right, looking at an addiction forum might give you some insight on how to help without being sucked into the drama.

[nygirl7]

Yes but a great majority of us who have given years of our life trying to help and council, who made mistakes when we were younger do have this disease and did not get it from transfusion.  Should we not be cured because of the manner in which we got the disesase?

People do need to realize that not everyone who has an addiction problem stays on drugs forever and many of us while we did make huge mistakes when we were younger are now 50+, parents, loving spouses, good decent working class people and we do take it to heart when it appears that someone says that we too should not have been cured.

Words hurt.

[carol411]

Yes, words hurt.  

[hepcson]

I apologize if I hurt anybodies feelings.  It was not my intent.  I was not passing judgment on anyone.  I have too have been on that side.  5 years ago I was diagnosed with lung cancer and do not smoke.  Everyone that hears about it asks how long I smoked.  I get angry about that.  

I am hurt beyond grief about my son. None of my comments were directed at anyone other than him. You are right this is not an addiction forum and I shall bow out.  It sounds like some of you have some misplaced anger yourselves.

[blondie717]

hi sent ya another pm. hope ya did not bow yet...Im sure noone hold you in contempt?? You should remember though lots are on TX or have been on TX or maybe they did do drugs in another lifetime and moved on, or maybe they got it another way and there are many..

[carol411]

Well, this is too bad.  Now where will the information that headaches aren't a symptom of hepc and any other relevant information come from?  Hepcmom has a real problem in that she deeply loves someone who cannot be trusted to tell the truth about anything let alone his hep c.  A headache??!!  And so he was trying to convince her to pay for interferon??!!  So she asked us about that.  And while sharing the story her grief clouded her judgment and she used some bad phrasing.  

I love you guys.  You have all helped me a lot and I will eagerly jump to your defense when the opportunity comes.  But I wish you could try just a little to read the tears in the words, because we can't hear the tears in her voice.  

[Diane12855]

I so agree with you. I never got the feeling that she was talking about anybody other than her son. I too have a son who has drained my husband and I dry financially. It is really hard when you reach the point where you realize that any help you give them is just making them worse, so you have to cut off all funds. My son will be homeless soon... why? because he can't get it into his head that playing computer games and partying with his friends all night won't pay the bills. I have bailed him out for the last time and I know the only way he will ever learn will be to suffer the consequences of his actions. I'm pretty sure this is where she was coming from... and I can hear her tears... we should offer her support only in this situation.... I think.

Diane

[Trinity4]

hepcons said:

"It sounds like some of you have some misplaced anger yourselves."

I never got that impression from any of the responses.

We all have problems, some people are more vocal than others.  You don't always get to hear what you want to hear.  Perceptions and opinions vary.....that's life.

Trinity    

[nygirl7]

Many of us in here are extremely familiar with addiction through ourselves or our spouses or our children. Yet, I don't hold it against anyone or even him - addiction is a disease as sure as hepc is and the two are often combined and go hand in hand.

No none has suggested that you go to an addiciton site to learn about hepc we are just asking please to be a little more wise with the verbiage you used......many of us have had to live with the stigma of this disease for a long time and we are quite sensitive when it comes to the ignorance that most of the world has with this disease. You did say that you felt bad for anyone who got hepc via transfusion and hoped that they were cured but many people got it in many other ways and it sounded rather darn specific to me.  

If you did not mean it that way I apologize but I dont see since your son did not aquire it via transfusion why you would say it that way.  You dont feel sorry for him or any of the others who got it via drug addiction or just experimenting when they were in their youth and didn't know better?

As someone who has had lung cancer I would think you would totally understand, it doesn't matter where you got a disease the consequences of the disease are what matters.

"It sounds like some of you have some misplaced anger yourselves. "

Was it really necessary to add this comment in to the post?  That's not anger and that seems to me personally to be the second non-sensitive thing you've said to people who have spent years in here trying to help others for no reason other than they are thoughtful, kind, loving humans with compassion.

And they ALL have problems each and every day but manage to come in here and try thier damnest to help save lives.  And yes, members in here have children who have hepc too so it's just confusing to read these comments and not go 'now why would someone say that?"

[his3707]

I see someone who has come here for support and has received it with some very good information.  I also  see the same who are always ready to jump or take statements "the wrong way"  which sets off a firestorm because they think someone has said something that is HCV politically incorrect.  I am one of the HCV infected that more than likely got this from experimenting with needles when I was about 17 years old.  Yes, that is a way to get it.  By risky behavior current or past. I have empathy for those of us who contracted HCV that way.  Nonetheless,  we need to acknowlege that, take  responsibility for that.  The source of infection is all around the cause reel. I dont feel indifferent, blameless,  that because of my actions I got this disease.Which I also passed to my son at birth.  (He is lucky. his immune system sucessfully taken care of it)   I do have a different  even deeper empathy for those who got this through a tainted transfusion, birth,accidental needle stick, dentist, surgery, whatever.  Bad behavior does not equal to being a "bad person".    Hepcson never led on to this conclusion even about her own child.   Fed up/extremely frustrated would be a good expression.  I had a cousin who was such an addict that his veins finally became so brittle,collapsed, he bled out and he died.   So I know and understand the disease of addiction.  Ive never heard of anyone that when they first tried needles or any other drug couldnt wait to become an addict/badperson.There are so many people that dont have insurance.  They might not be able to get treatment because they cant afford it.  Not just becuase they are drug addict and shouldnt be cured .Let people express themselves here,  Who are we that someone should they have to come back and apologize to anyone on this forum for how they are feeling because they "offended?"   If they are mistaken about information,  the informed should educate them as great teachers should. Much support should be given.    Be kind people.  

[carol411]

Oh yes.  The people who spend time here helping others are thoughtful, kind, loving human beings who have helped many through the shock, fear, ignorance, and shame of dealing with hep c.  Without the time and care you provide almost every day, there would be many of us, and I am one, that would not have the knowledge or emotional support to get through this trying, long, life altering treatment.  I thank you all.  

But dealing with the stigma, borne of ignorance, has put us on the defensive.  And it has made us sensitive.  So sensitive at times that we parse sentences to come up with the words of offense that must be challenged rather than letting it slide.  Sometimes letting it slide and talking about it later is a better way to learn what's really in the mind of those who speak before they think.  Especially if that person is emotional.  Who of us hasn't said something silly when upset?  And does being called on it right then help?  Usually not.  

There's no reason you would remember, but early in treatment the whole tiny town I live in became aware of my hep c and treatment.  I deal with ignorance every day.  The stigma is real.  Just as it doesn't matter where the disease comes from but how it is dealt with that matters, it isn't the ignorance but the reaching out for knowledge that matters.  So no matter how some questions are phrased (and there have been some that stab at my soul) I do my best to answer in a way that calms the fear and lessens the stigma.  

When someone is put on the defensive, they're often too busy defending themselves to listen and learn.

[James10500]

I always get a laugh when people say they " experimented " with drugs.  

[nygirl7]

Yeah James I experimented with drugs........for 20 years until I proved my study was complete ;)

[Boobert]

I have a 25 year completed study.

[willbb]

I could never seem to get that experiment right.but I tried hard for years

[James10500]

My only experiment was did I get high or not. And if I didn't I was more than happy to experiment again.  

[Trish77]

Well, *I*......nevermind.

This was the right place for her to come and ask questions.  Maybe there are times when we should look past wounded sensibilities and see the bigger picture.  The details of this particular situation warranted an extra measure of compassion and understanding so that the SON might get the help he needs by providing information that we have to give.  How many of us landed here asking the RIGHT questions right from the start?  Isn't that why people come here?  For information and support?  If we can tackle someone who wants to know if they can get Hep C from the dog that licked the infected mother-in-law's underwears, surely we can dig a little bit for THE SON - who needs his mom to have the right information - it just might save his life.

A mother and son lost to each other, a mother who says she doesn't have anything left for her son but is here asking questions just the same, even if not exactly the right questions - yet - and an opportunity lost to educate and inform.  How tragic all around.

hepcson - keep digging, Mom.  Your son is in there and you need to "see" and feel him again and differently.  Out of anyone else in the world, it's you he needs.  For the rest of his life.  Forget the social worker jargon and all that.  Just be his Mom.  Just please...never give up.  Good luck with this.