Aa
Angry, Hurt and Confused
It is absolutly driving me crazy not knowing the status of my husbands hep c progression. He said he was going to wait til after hunting season which is the first of Jan before he goes to see a specialist. I am angry at him but at the same time I am hurt that he doesnt want to know what our future holds am I wrong for feeling this way? I held this all inside for many years fear, anger, hurt and many other emotions. Some days I feel like I could just leave or crawl in a hole and die. How do I deal with these emotions? I really need help with all the advice I can get.
I know you're worried and anxious and that you love him and want him to be well and safe, but try not to make his chronic HCV infection about you.
Try to be patient and let him enjoy hunting.
Treatment is difficult and he is the one who has to suffer through it.
I'm sure he won't wait too long to find out about the future. He probably just has to get his head together. Maybe you guys can talk with a "professional" about your feelings.
You can't imagine what the diagnosis of Hep C does to a patient's mental state. You can do this. He needs your support and I think you're scared. Don't let fear come between you two. Just give him a little time.
Reva
Reva
Treatment is difficult and he is the one who has to suffer through it.
I'm sure he won't wait too long to find out about the future. He probably just has to get his head together. Maybe you guys can talk with a "professional" about your feelings.
You can't imagine what the diagnosis of Hep C does to a patient's mental state. You can do this. He needs your support and I think you're scared. Don't let fear come between you two. Just give him a little time.
Reva
Reva
Those numbers do look good right now. But dont rest on your laurels. Make an appointment with a Hepatologist that is VERY up to date on all things HCV. You could call and find out more about the docs in your area and research them. Call the offices and ask them what type of experience do they have with hep c patients. Lots of times if you do the leg work your loved one might go along to check it out. Just dont let any doc tell you you need to start treatment right away off the bat before you check everything out. When I saw my first doc who was a gastroenterologist, he just gave me some leaflets and said call me back when you want to start. There was a good chance I would of failed the standard dual therapy treatment since i was a CT allele which has better chances of SVR with the newest Triple therapy Direct Acting Antivirals. I took my time and found a good trial. If it wasnt for the great folks on this forum that told me to slow down and check things out good first, I would not have known better and went with what was first presented to me. Its wonderful that you came here for support . also that you care enough to find answers for you husband
This was the best letter I've seen in along time, I think so many of us can associate with it...... Thanks for posting it
Mike
Mike
Some people are able to live with hep C and have no ill affect.
As far as your problem goes, well, do you know the serenity prayer ?
Grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
One thing you can change~ YOU!
One thing you cannot change~ anyone else.
Accept your husband as he is. If he says he's willing to have more medical tests after hunting season, than practice patience and be grateful that he is alive and healthy.
BTW: His ALT and AST look great!
As far as your problem goes, well, do you know the serenity prayer ?
Grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
One thing you can change~ YOU!
One thing you cannot change~ anyone else.
Accept your husband as he is. If he says he's willing to have more medical tests after hunting season, than practice patience and be grateful that he is alive and healthy.
BTW: His ALT and AST look great!
his ALT RHC 34U/L and the AST RHC read 27U/L were normal but we have not had any other test ran our family medical doctor ran those for him. I just would he would go ahead and go see a Hep C doctor.
Sorry you are going through this. Perhaps this letter from unknown author will help some:
Letter to People Without Hepatitis C
Having Hepatitis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects, and of those that think they know, many are actually mis-informed.
In the spirit of informing those who wish to understand ... These are the things that I would like you to understand about me before you judge me...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what Hepatitis does to you.
Please understand that HCV or HBV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.
Also, Hepatitis may cause condary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive.
If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with hepatitis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outside world... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me.
Letter to People Without Hepatitis C
Having Hepatitis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects, and of those that think they know, many are actually mis-informed.
In the spirit of informing those who wish to understand ... These are the things that I would like you to understand about me before you judge me...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what Hepatitis does to you.
Please understand that HCV or HBV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.
Also, Hepatitis may cause condary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive.
If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with hepatitis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outside world... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me.
Oh your question was how to deal with it.... You cant make anyone do anything. It is a personal decision to treat or not to treat. I think your feelings are pretty normal. Anyone would be upset if their loved one had a disease that they were just blowing off. Fortunately like I said before, most likely he has time to take care of this. You should Keep doing all the research you can. present information to him in a positive way. show him that people are getting cured, and the treatments are getting better. try to help him make healthy choices like food and drink while he is waiting to deal with it. Like keeping the weight under control. avoid high sugary fatty fried food, alcohol is not a good thing to partake in when you have HCV. avoid smoking. just do liver friendly things help him take good care of himself. Even if you dont want to :)
The only advice I can offer you is to seek marriage or individual counseling. I commend you for your caring and desire to be involved in helping your husband, but if he is unwilling to let you be a partner in his health care then, there is nothing you can do until he changes his mind.
If you can print out some literature about cirrhosis and ESLD which is often the result of *not* treating and leave it for him to read, it make spur him to action but honestly he sounds like he wants to keep his head in the sand.
He has the right to not treat and he has the right to die a terrible death and though he may be very selfish to make that choice (Refusing tx *is* a choice) the bottom line is, it is up to him.
I am quite sympathetic, but I really don't see how it helps you or will change him to continue to be angry. I would see a counselor or learn meditation just so that I would be able to cope with the tragedy or his apathy or fear.
http://www.hcvadvocate.org/hcsp/articles/cecil-2.html
Good luck to you.and let us know how things turn out.
If you can print out some literature about cirrhosis and ESLD which is often the result of *not* treating and leave it for him to read, it make spur him to action but honestly he sounds like he wants to keep his head in the sand.
He has the right to not treat and he has the right to die a terrible death and though he may be very selfish to make that choice (Refusing tx *is* a choice) the bottom line is, it is up to him.
I am quite sympathetic, but I really don't see how it helps you or will change him to continue to be angry. I would see a counselor or learn meditation just so that I would be able to cope with the tragedy or his apathy or fear.
http://www.hcvadvocate.org/hcsp/articles/cecil-2.html
Good luck to you.and let us know how things turn out.
I understand its hard to accept that some people for all kinds of reasons dont want to know where they stand in the course of their disease. Lots of times HCV progression is slow moving but not always. If he would find out how much (if any) liver damage he has he can either wait to treat when the newer medications become available or go ahead and treat now if he needs to. If he doesnt want to have a biopsy right now, some blood tests can give you a general idea how things are working. blood markers Like platelett counts, ALT and AST numbers are just to name a few. But Even though they could be normal ranges the damage is ongoing. lots of times the numbers dont shoot up until a lot of damage has been done. He could have a fibrosure test which uses blood markers to ***** damage. Even though not 100 percent, it could give him an idea where to start. Can you give us some more info about his current health status that you do know? Even if he went to see a specialist now it wouldnt affect the hunting season. Nothing would most likely happen right away anyway. keep us posted
Lydia
Lydia
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