Aa
My son is newly diagnosed
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?
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?
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.
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.
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.
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?"
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?"
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
"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
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
Diane
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.
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.
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