Aa
Individual choices
I have been reading the debate of the last few threads. I feel so bad about the conflict and hope my "2 cents" have not added to it. I for sure do not understand all the technical stuff I have just read. I only somewhat understand MY OWN CASE. And unless we are experts, I think that is what we should focus on. For ME, my doctor said, "let's try tx. Not because you are close to dying, you are NOT. And you will not die from this in the next five years. But you are sick from the hep and let's give it a shot." If my doc had said, without tx you will be dead in the next few years, you can bet I would have no doubts about tx - come hell or high water. I have a friend who has been on and off tx for the last 5 years. She would already have died without tx. So it is VERY individual, each case is different and is a calculated risk, no matter what we decide with the help of the experts.
Be nice to each other, guys. We are all ill, and in need of kindness and support.
Edgar, I am here for you and I am getting ready to do #9 tonite. I picture myself able to function in the outside world again and that keeps me going one more hour, or minute.
Keep the faith - this too shall pass. And you are such a wonderful guy, you are doing fine, don't lose hope.
Be nice to each other, guys. We are all ill, and in need of kindness and support.
Edgar, I am here for you and I am getting ready to do #9 tonite. I picture myself able to function in the outside world again and that keeps me going one more hour, or minute.
Keep the faith - this too shall pass. And you are such a wonderful guy, you are doing fine, don't lose hope.
You have nothing to feel bad about as we all have our own ideas and noone should feel guilty for their decisions. I read your post yesterday and I do agree that at times...everyone..included our own doctors immediately start on tx and there is so many different options to weigh for yourself. And you are having a very rough time and my heart goes out to you and you and only you will know if encouragement is not the answer in your situation and you have to wait for another option for your disease. We did have a lot going yesterday but hey..we are grown ups here and everything reported yesterday was nothing new to us. There was alot of facts being thrown out there and that is sometimes very scary because I for one am trying to grasp or find what is going to work for me to get me through this. We can stick our heads in the sand and refuse to listen or look up what all can either happen on tx or if we are 1's and what next...if we don't clear. Alot of us are in the midst of tx and its very discouraging to hear only more what can happen but Hey...that is the cold hard facts hitting on us and we have to make a decision for us and move on. The great thing about this board is yes we do get facts if we want them but sometimes...I almost can feel your hands and heart reaching out to me!
Thanks, I also feel some real hugs sometimes here. And to be hugged by people who are living what I am living is a great, great comfort.
I agree with you - this is a forum for us to support each other. I, for one, am not sure that I could endure this without all of you. Thanx...Cathy
I posted a comment about all the latest "discussions" down in the "Ronny" thread. I still have some other comments to make so I will make them here in this general thread. Most of the oldies know my stance on all this but many are new so I will restate my "personal" position.
The decision to start tx should NOT be taken lightly. It is one of the most important ones we make with HCV and should be well researched and thought out. I disagree with simply following ANY doctors advice alone as we make this decision. I disagree that this tx is simply something to be "Tried". It should be accompanied by a FIRM commitment to finish unless the resulting sides become overwhelming and physically dangerous. If you cannot make that kind of a commitment then you should not even start. This stuff ain't easy. It can be scarey at times. The decisions we may have to make while on tx can be dangerous ones sometimes. You need to assess your own individual feelings on that BEFORE you start.
Failure should NOT be an option......it should only be something that is "forced" upon you by the physical risks you mAY encounter. To try and fail leaves you with some pretty poor alternatives.
You cannot depend on the future to protect you. You must deal with the present. There are all kinds of reasons to either wait or go ahead. YOU must all weigh those and decide to "commit" to this tx or not. The current tx CAN work. It does for many. Kill the Dragon and you will be free of this forever. The original Peg trial folks who achieved SVR are past the 7-8 year mark now. That sure sounds like CURED to me! It stopps ALL future damage from HCV. It does NOT stop all future damage from other things though. If you wait too long to kill the Dragon, those "other things" can get to the point where even killing the Dragon will not stop that type of progression. That is why I just cringe when I see folks decide to wait simply because they are afraid they might feel bad for awhile on this stuff. You should have some GOOD reason if you choose not to kill this.
HCV WILL kill you if given enough time. There is no doubt in MY mind. Then you are looking at if you are going to die of something else first of not....and what your quality of life will be if you allow this to keep progressing over the long haul.....all the while lowering your odds of ckearing with the current tx that DOES work because of the progression.
There are NO guarantees either way. No guarantee that you will not die before the symptoms become unbearable, and no guarantee that you will suceed by simply doing the current tx either. It is a VERY tough decision to make.
We are all alone in this decision. But make it we must. All I can say now is TAKE IT SERIOUSLY. Make your decision and live with it.
I made mine. I WAS a 1b and I AM CURED BABY! Who says type 1's can't succeed?? Send THAT person to ME.
Open and frank discussions of BOTH sides are welcome here as long as it stays respectful and does NOT get personal. That is the only way to make the "great" decision that we all must wrestle with.
I wish you ALL well on your individual journeys through all this ****. There is NO real "right" decision.....just the one the we can live with for ourselves.
The decision to start tx should NOT be taken lightly. It is one of the most important ones we make with HCV and should be well researched and thought out. I disagree with simply following ANY doctors advice alone as we make this decision. I disagree that this tx is simply something to be "Tried". It should be accompanied by a FIRM commitment to finish unless the resulting sides become overwhelming and physically dangerous. If you cannot make that kind of a commitment then you should not even start. This stuff ain't easy. It can be scarey at times. The decisions we may have to make while on tx can be dangerous ones sometimes. You need to assess your own individual feelings on that BEFORE you start.
Failure should NOT be an option......it should only be something that is "forced" upon you by the physical risks you mAY encounter. To try and fail leaves you with some pretty poor alternatives.
You cannot depend on the future to protect you. You must deal with the present. There are all kinds of reasons to either wait or go ahead. YOU must all weigh those and decide to "commit" to this tx or not. The current tx CAN work. It does for many. Kill the Dragon and you will be free of this forever. The original Peg trial folks who achieved SVR are past the 7-8 year mark now. That sure sounds like CURED to me! It stopps ALL future damage from HCV. It does NOT stop all future damage from other things though. If you wait too long to kill the Dragon, those "other things" can get to the point where even killing the Dragon will not stop that type of progression. That is why I just cringe when I see folks decide to wait simply because they are afraid they might feel bad for awhile on this stuff. You should have some GOOD reason if you choose not to kill this.
HCV WILL kill you if given enough time. There is no doubt in MY mind. Then you are looking at if you are going to die of something else first of not....and what your quality of life will be if you allow this to keep progressing over the long haul.....all the while lowering your odds of ckearing with the current tx that DOES work because of the progression.
There are NO guarantees either way. No guarantee that you will not die before the symptoms become unbearable, and no guarantee that you will suceed by simply doing the current tx either. It is a VERY tough decision to make.
We are all alone in this decision. But make it we must. All I can say now is TAKE IT SERIOUSLY. Make your decision and live with it.
I made mine. I WAS a 1b and I AM CURED BABY! Who says type 1's can't succeed?? Send THAT person to ME.
Open and frank discussions of BOTH sides are welcome here as long as it stays respectful and does NOT get personal. That is the only way to make the "great" decision that we all must wrestle with.
I wish you ALL well on your individual journeys through all this ****. There is NO real "right" decision.....just the one the we can live with for ourselves.
Thank you for the feedback. I totally see your point; but I personally NEED to look at it somewhat differently. I NEED to take it a day at a time. I got sober 18 years ago, drugs got me where I am today. And yet the only way I could get clean was to take it "a day at a time." Sometimes less. I could not fathom taking it any other way, the thought of a lifetime drug free was simply unimaginable. But using this 12 step method I have made it through all these years.
I do agree that the decision to treat should not be made lightly. It took me 7 years to make this decision; that is how scary I found it to make. And because of the combo therapy, I know that the worst odds of a cure are close to 50%, and the odds are much higher if you are anything but a genotype 1.
But people have committed SUICIDE on these drugs, this is the biggest concern I think from all I read. So I need to know that if I can't stand it, if I feel that I cannot get through one more day without losing my mind or harming myself, I can stop. Some of us are recovering addicts; some of us have real emotional problems.
I probably will NOT stop. I just need to know that nothing is written in stone, that the choice is mine.
And because I know that I have a doc who treats ONLY hep C; who treats hundreds of us every week, I need to take his advice very seriously. I need to arm myself with good information and good questions, and then make a good informed choices; based on all of this and his expert opinion.
There is no right answer for all of us. Many factors have to be weighed and then an individual decision needs to be made. That is all I am trying to say.
I do agree that the decision to treat should not be made lightly. It took me 7 years to make this decision; that is how scary I found it to make. And because of the combo therapy, I know that the worst odds of a cure are close to 50%, and the odds are much higher if you are anything but a genotype 1.
But people have committed SUICIDE on these drugs, this is the biggest concern I think from all I read. So I need to know that if I can't stand it, if I feel that I cannot get through one more day without losing my mind or harming myself, I can stop. Some of us are recovering addicts; some of us have real emotional problems.
I probably will NOT stop. I just need to know that nothing is written in stone, that the choice is mine.
And because I know that I have a doc who treats ONLY hep C; who treats hundreds of us every week, I need to take his advice very seriously. I need to arm myself with good information and good questions, and then make a good informed choices; based on all of this and his expert opinion.
There is no right answer for all of us. Many factors have to be weighed and then an individual decision needs to be made. That is all I am trying to say.
Oh yes...I TOTALLY agree with all that you say. The depressive side effects of these meds are vERY real and can slam certain folks every bit as hard as the other physical sides. I have felt the need to give "personal" additional help to many of the folks here through private e-mail at times for just this reason. It's usually the depression that has them in a tizzy. This stuff can be a nightmare for those who don't understand it well. Some can get by with medications for this. Some just need to talk it out and get some straight non-judgemental advice from someone who cares and understands what they are feeling. This board can be a "Godsend" for that sometimes. Sometimes it takes more. While suicide can be a possibility, the odds of that for any normal person are VERY remote. You can feel it comming and there IS help availiable for those who need it. There are psych docs and ad's and all kinds of folks like me that can be questioned and leaned on. There is help for the depression. You are always welcome to e-mail me anytime to talk about this stuff. I don't bite. I DO like to laugh though.......
Today is a new day and I intend to keep it that way.
I intend to stay for the ride regardless of how rough we all know it can get at times.
I would only stop tx if my dr. should ever suggest it.
All of the above mentioned and so many other's are the reason why so many of us are still around. You are all real-life life-lines.
When I went through tx 18 months ago for the period of 7 months it was just myself/my feelings, and my Dr. I knew nothing about this forum. I will never forget the loneliness and frustration and despair and anger I felt. No one to identify my feelings and concerns with. My wife tried to understand but I am sure it was a foreign language to her at times. As I write of my past feelings I cannot help but to let the tears come out.
I cannot even hold them back. I no longer have that strength.
But all of you positve people have given me a new strength which I refuse to let go and which I will always hold on to and cherish. The DRAGON would love for me to quit.. Forget it.
I am here for the ride and I refuse to get off unless I am told that I must.
I send you all a strong and sincere embrace. Thank you for being there for me when I needed you all the most. I do not believe in coincidences.
It was no coincidence that you were all there yesterday.
A friend forever.... EDGAR
I intend to stay for the ride regardless of how rough we all know it can get at times.
I would only stop tx if my dr. should ever suggest it.
All of the above mentioned and so many other's are the reason why so many of us are still around. You are all real-life life-lines.
When I went through tx 18 months ago for the period of 7 months it was just myself/my feelings, and my Dr. I knew nothing about this forum. I will never forget the loneliness and frustration and despair and anger I felt. No one to identify my feelings and concerns with. My wife tried to understand but I am sure it was a foreign language to her at times. As I write of my past feelings I cannot help but to let the tears come out.
I cannot even hold them back. I no longer have that strength.
But all of you positve people have given me a new strength which I refuse to let go and which I will always hold on to and cherish. The DRAGON would love for me to quit.. Forget it.
I am here for the ride and I refuse to get off unless I am told that I must.
I send you all a strong and sincere embrace. Thank you for being there for me when I needed you all the most. I do not believe in coincidences.
It was no coincidence that you were all there yesterday.
A friend forever.... EDGAR
here is something interesting to think about and i think encourageing. we do not shoot interferon in our blood lines we shoot it in the fat. subcutaneously. if it were so important to it's effectiveness to be in the blood stream directly than we would have to mainline it.
the other thought is this: if i'm shooting in my fat and it's being erradicated from my blood than it is crossing over!!!
the other thought i had is: what is this "blood brain barrier"? is it essential to "cross"? we are shooting it in the fat!!! i don't know about you but i believe there are other ways for this stuff to enter our brains. it clearly travels in other tissues as well or it wouldn't get from our fatty stomachs to our livers and eventually in our blood. we do test our blood for the virus'. somehow the meds are getting at the virus' all over our bodies...
THE FACT IS THAT PEOPLES VIRUS' ARE BEING ERRADICATED AND PEOPLES LIVERS ARE RESPONDING TO THE TX IN A POSSITIVE WAY!!!PEOPLE ARE TESTING NEGATIVE ON VIRAL LOADS AND ALT AND AST'S ARE GOING DOWN IN RESPONCE TO TX. THESE ARE FACTS!!!
plus i thought it was our immune system that is really killing this virus. the interferon is supporting our system that is already in place. the immune system does go into our brains if it didn't we would never heal from brain surgeries.
so i guess what i'm saying is that the debate is interesting but doesn't change the facts that people are being svr for years and thier livers are getting healthier. this treatment is stopping the virus from killing many liver cells or our alt and asts would not be dropping and returning to normal. non responders livers are staying healthy longer while on tx. these are facts. so as long as there are these possibilities we have good facts to base our hopes on. we are not fooling ourselves here we are just willing to take the chances with the tx with the hope that we will be amoung those who benifit.
people do die of hepc. the liver does deteriorate if this disease is not removed. peoples livers are stopping from dieing from hcv and non responders have a hope to increase there life expectancies while on tx...these are the facts...
the other thought is this: if i'm shooting in my fat and it's being erradicated from my blood than it is crossing over!!!
the other thought i had is: what is this "blood brain barrier"? is it essential to "cross"? we are shooting it in the fat!!! i don't know about you but i believe there are other ways for this stuff to enter our brains. it clearly travels in other tissues as well or it wouldn't get from our fatty stomachs to our livers and eventually in our blood. we do test our blood for the virus'. somehow the meds are getting at the virus' all over our bodies...
THE FACT IS THAT PEOPLES VIRUS' ARE BEING ERRADICATED AND PEOPLES LIVERS ARE RESPONDING TO THE TX IN A POSSITIVE WAY!!!PEOPLE ARE TESTING NEGATIVE ON VIRAL LOADS AND ALT AND AST'S ARE GOING DOWN IN RESPONCE TO TX. THESE ARE FACTS!!!
plus i thought it was our immune system that is really killing this virus. the interferon is supporting our system that is already in place. the immune system does go into our brains if it didn't we would never heal from brain surgeries.
so i guess what i'm saying is that the debate is interesting but doesn't change the facts that people are being svr for years and thier livers are getting healthier. this treatment is stopping the virus from killing many liver cells or our alt and asts would not be dropping and returning to normal. non responders livers are staying healthy longer while on tx. these are facts. so as long as there are these possibilities we have good facts to base our hopes on. we are not fooling ourselves here we are just willing to take the chances with the tx with the hope that we will be amoung those who benifit.
people do die of hepc. the liver does deteriorate if this disease is not removed. peoples livers are stopping from dieing from hcv and non responders have a hope to increase there life expectancies while on tx...these are the facts...
"DUDETTE".....YOU CRACK ME UP !!!!!!!!!! I don't know what went on yesterday either...but I decided not to give any time here, but spend it on the sofa, resting my head in my husbands lap, watching TV...but that didn't turn out the way I expected it too. My 10 yr old g.daughter decided to "act up", by the way she NEVER
does, but did get a letter from her dad, who is in prison and her mother was on crack!!!! You know the story....so to say the least I had a very upsetting nite! But tonite is gonna be different we're gonnuh curl up on the sofa and smoke one of those little...get this, sweet cigars. Picture this...I colored my hair, rolled it on hot rollers and pulled it up..I must say it looks really good and feels sooooooooo soft....I have on make-up, p.j's and a GOOD NITE is what we're having tonite!!!!! As least we're being.........maybe...."OLD" ???? LOL nite girl, luv ya...keep us imformed of how you "get your daughter back"!!!! And please anybody who reads this..we're all here together for the same reason, let's show love, compassion and help in here. Prayers to all, Cindee
does, but did get a letter from her dad, who is in prison and her mother was on crack!!!! You know the story....so to say the least I had a very upsetting nite! But tonite is gonna be different we're gonnuh curl up on the sofa and smoke one of those little...get this, sweet cigars. Picture this...I colored my hair, rolled it on hot rollers and pulled it up..I must say it looks really good and feels sooooooooo soft....I have on make-up, p.j's and a GOOD NITE is what we're having tonite!!!!! As least we're being.........maybe...."OLD" ???? LOL nite girl, luv ya...keep us imformed of how you "get your daughter back"!!!! And please anybody who reads this..we're all here together for the same reason, let's show love, compassion and help in here. Prayers to all, Cindee
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