Aa
Getting some things off my chest
I've been following the board pretty actively for the last six weeks with a growing sense of sorrow and frustration. I hope no one interprets these comments as directed against them. I simply wanted to get some things off my chest.
My frustration is this – the fact is, in the vast majority of cases, treatment for Hep C is unbelievably challenging. I know I didn't feel prepared for it. For years, my internist had been saying, "It's no big deal." Along about week 12 when it took me an hour to drag myself out of bed and I lost ten lbs in two weeks, I felt like going back to him and explaining that there was no conceivable way he could do his work if he was undergoing treatment.
I do not feel I was adequately prepared for the challenge. I was briefed by a hepatologist and a np but both only discussed some of the sx in general terms. The Pegasys information site is a joke. It's disgraceful the way they understate the known side effects. Then when I started to experience the side effects and felt a growing sense of desperation, they said, "Oh, yeah, that's about typical." Well, if it's typical, why didn't they prepare me?
I definitely do not feel I have the level of medical monitoring that is appropriate to the challenges of the treatment. I really feel as if I have been left largely on my own.
The fact is that many people will not be able to manage treatment. If you have a psychologically impairment or have a current addiction problem. If you're work and home lives are not supportive and stable, you may just find this impossible to do. But is there any excuse for not educating such people before they start rather than once they are in treatment?
I wish there were a major public relations campaign to explain that treatment for Hep C is hell. I go to an oncologist (separate issue) who says that interferon treatment is harder than chemotherapy. With chemotherapy, you feel bad right after you get an injection but then you have good days. It's possible to stay focused and goal oriented. With interferon, you feel like c**p all the time. And it is easy to lose sight of the goal and feel despondent. And the fact that there is no public awareness of the difficulty of the treatment makes it worse. Even if you tell people you are undergoing treatment, you suffer in silence because no one understands the challenges involved.
I would rather everyone understood that in most cases the treatment is hell and then if it is relatively mild for people all the better. But I am saddened and frustrated every time I read a posting from someone who is just beginning treatment who has clearly not been counseled about the challenges that quite possibly face them.
I would love nothing more than if the people on this board disagreed with me. I'm feeling pretty blue tonight. Thank you for letting me get this off my chest.
My frustration is this – the fact is, in the vast majority of cases, treatment for Hep C is unbelievably challenging. I know I didn't feel prepared for it. For years, my internist had been saying, "It's no big deal." Along about week 12 when it took me an hour to drag myself out of bed and I lost ten lbs in two weeks, I felt like going back to him and explaining that there was no conceivable way he could do his work if he was undergoing treatment.
I do not feel I was adequately prepared for the challenge. I was briefed by a hepatologist and a np but both only discussed some of the sx in general terms. The Pegasys information site is a joke. It's disgraceful the way they understate the known side effects. Then when I started to experience the side effects and felt a growing sense of desperation, they said, "Oh, yeah, that's about typical." Well, if it's typical, why didn't they prepare me?
I definitely do not feel I have the level of medical monitoring that is appropriate to the challenges of the treatment. I really feel as if I have been left largely on my own.
The fact is that many people will not be able to manage treatment. If you have a psychologically impairment or have a current addiction problem. If you're work and home lives are not supportive and stable, you may just find this impossible to do. But is there any excuse for not educating such people before they start rather than once they are in treatment?
I wish there were a major public relations campaign to explain that treatment for Hep C is hell. I go to an oncologist (separate issue) who says that interferon treatment is harder than chemotherapy. With chemotherapy, you feel bad right after you get an injection but then you have good days. It's possible to stay focused and goal oriented. With interferon, you feel like c**p all the time. And it is easy to lose sight of the goal and feel despondent. And the fact that there is no public awareness of the difficulty of the treatment makes it worse. Even if you tell people you are undergoing treatment, you suffer in silence because no one understands the challenges involved.
I would rather everyone understood that in most cases the treatment is hell and then if it is relatively mild for people all the better. But I am saddened and frustrated every time I read a posting from someone who is just beginning treatment who has clearly not been counseled about the challenges that quite possibly face them.
I would love nothing more than if the people on this board disagreed with me. I'm feeling pretty blue tonight. Thank you for letting me get this off my chest.
My experience through four failed treatments can best be described as suffering for a cause. If you think of the outcome of doing nothing, I believe you would suffer much much more than getting treated, irregardless of the torture.
I can say this from first hand experience, after watching my once robust, powerful father wither away into nothing before dying of Cirrhosis at age 62. Although he fought and accepted with humility and bravery the slow consumption of his once energetic and Adonis like body, the end was too horrible to describe.
Given this lingering image implanted in my brain, I for one will welcome yet a fifth treatment after nearly dying of the last one. Why? I have something to live for. As an entertainer, even while I was suffering through the treatments, I was making sad people happy. This was the catalyst for propelling me to continue treatment in spite of the suffering and torture, as it will be the catalyst for my upcoming battle.
As for the statement at the start of this thread, no one, including doctors, can predict what the outcome will be during treatment. In that case, what can doctor say except expect the unexpected. At this point in history, there are only a handful of treatments available. To do nothing is to lay down, give up and die. To complain is futile because every success has it’s price.
I'm looking forward to the next treatment with great anticipation because I've always been a fighter and have survived 13 surgeries. Even if a doctor told me the very worse can be expected, what's worse than slow death from this disease? When you have the chance, take it and be thankful we live in a time in history where something can be done.
Magnum
I can say this from first hand experience, after watching my once robust, powerful father wither away into nothing before dying of Cirrhosis at age 62. Although he fought and accepted with humility and bravery the slow consumption of his once energetic and Adonis like body, the end was too horrible to describe.
Given this lingering image implanted in my brain, I for one will welcome yet a fifth treatment after nearly dying of the last one. Why? I have something to live for. As an entertainer, even while I was suffering through the treatments, I was making sad people happy. This was the catalyst for propelling me to continue treatment in spite of the suffering and torture, as it will be the catalyst for my upcoming battle.
As for the statement at the start of this thread, no one, including doctors, can predict what the outcome will be during treatment. In that case, what can doctor say except expect the unexpected. At this point in history, there are only a handful of treatments available. To do nothing is to lay down, give up and die. To complain is futile because every success has it’s price.
I'm looking forward to the next treatment with great anticipation because I've always been a fighter and have survived 13 surgeries. Even if a doctor told me the very worse can be expected, what's worse than slow death from this disease? When you have the chance, take it and be thankful we live in a time in history where something can be done.
Magnum
Your right Trish, never said I had little or no sx. I think I even mentioned earlier today this was a bad day - pain and weepy. Well, it never got any better. Came home, had a bite to eat and went to bed. Just woke up and will probably not sleep well the rest of the night. The pain was bad today. I've dealt with this on and off since starting tx. If someone were experiencing this same degree of pain, they may react differently from me. It may be totally debilitating to them. This is what I I've come to expect on a daily basis. I keep going everyday without any expectations - just please God let me get through the day. I know I push myself too damn hard - but that's who I am. I don't know any other way to approach this treatment - head on - let the chips fall where they may. I suffer, not doubt about it. I just suffer in my own way. That was the reason for my comment about treatment is unique to each person. Mentally, I'm prepared to extend treatment, physically I don't know if I can do it. Treatment s-u-c-k-s - my road has been one of quiet desperation and no amount of information or doctors advice could have fully prepared me. I am doing what I have to do the only way I know how to do it. It gets me through each day and that is the best I can hope for right now. Everybody suffers - everybody.
Trin
Trin
That's no limb...
I dunno how other folks are hit - I know I was hit very hard - but I managed to force myself to go to work.. Most days... I just couldn't on some... And a lot of the days I did go to work - it was a haze... It was like --- what was it someone said... uhm... like floating through a bad acid trip...
OK - I've never done acid - but I can imagine what it would be like. And that's what I would think a very bad acid trip would be like.
LOL!
It is amazing here - I love this place --- and I think --- THANK GOD this place was here at the end of my TX --- I thought I was going crazy --- the docs had NEVER heard of anyone having it like I had it... So --- they all thought it was "ta dah" --- in my head... And I almost believed them.
But back to the topic at hand.
Yeah - I really don't think doctors --- unless they've been there - have the human ability to be able to envision the incredible sides that happen.
Merry-go-side-around.
Meki
I dunno how other folks are hit - I know I was hit very hard - but I managed to force myself to go to work.. Most days... I just couldn't on some... And a lot of the days I did go to work - it was a haze... It was like --- what was it someone said... uhm... like floating through a bad acid trip...
OK - I've never done acid - but I can imagine what it would be like. And that's what I would think a very bad acid trip would be like.
LOL!
It is amazing here - I love this place --- and I think --- THANK GOD this place was here at the end of my TX --- I thought I was going crazy --- the docs had NEVER heard of anyone having it like I had it... So --- they all thought it was "ta dah" --- in my head... And I almost believed them.
But back to the topic at hand.
Yeah - I really don't think doctors --- unless they've been there - have the human ability to be able to envision the incredible sides that happen.
Merry-go-side-around.
Meki
"AS far as Trin --- and other folks who don't have too many sides --- lucky youse guys...
I'm VERY happy for you --- and I wish EVERYONE had little to no sides. Cause the bad sides are really very bad... "
I'm going to go out on a limb here and say that I didn't read any posts from anyone who said they had little to no sides. More like that in SPITE of the sides, have managed to work and maintain some mental triumph over all this and some quality of life and therefore feel our treatment has not been as HARD on us as it has been on some. I've read some really tough stuff here and I know I'm not experiencing THAT. If someone cannot work and I don't care WHY .. it's for however treatment is hitting THEM .. I figure they have it harder than me because I AM working, simple as that. I'm grateful for the way I've been able to get through treatment even though I hit a number of times where I really started to doubt that I was going to be able to work through the whole thing and then it would be another week and another one and here I am at Week 29. I have had pretty good quality of life throughout treatment in spite of the side effects .. and for that I am immensely grateful as I think that has helped me deal with the sides better and it's circular because if the sides had been tougher, maybe my QOL would have been worse too. I'm just..grateful...to be here at Week 29 and getting closer to the countdown.
Was never ashamed of any of that .. just tried to have a little compassion for those that were struggling so very much whether mentally or physically or both.
What was always so amazing to me was watching everybody able to dig deep for those who were at a real wall and rally *together* to help them over the hump. Something beautiful to see for sure...and then to see THEM doing the same thing for someone else some weeks down the road .. there is some beautiful poetry here.
I'm VERY happy for you --- and I wish EVERYONE had little to no sides. Cause the bad sides are really very bad... "
I'm going to go out on a limb here and say that I didn't read any posts from anyone who said they had little to no sides. More like that in SPITE of the sides, have managed to work and maintain some mental triumph over all this and some quality of life and therefore feel our treatment has not been as HARD on us as it has been on some. I've read some really tough stuff here and I know I'm not experiencing THAT. If someone cannot work and I don't care WHY .. it's for however treatment is hitting THEM .. I figure they have it harder than me because I AM working, simple as that. I'm grateful for the way I've been able to get through treatment even though I hit a number of times where I really started to doubt that I was going to be able to work through the whole thing and then it would be another week and another one and here I am at Week 29. I have had pretty good quality of life throughout treatment in spite of the side effects .. and for that I am immensely grateful as I think that has helped me deal with the sides better and it's circular because if the sides had been tougher, maybe my QOL would have been worse too. I'm just..grateful...to be here at Week 29 and getting closer to the countdown.
Was never ashamed of any of that .. just tried to have a little compassion for those that were struggling so very much whether mentally or physically or both.
What was always so amazing to me was watching everybody able to dig deep for those who were at a real wall and rally *together* to help them over the hump. Something beautiful to see for sure...and then to see THEM doing the same thing for someone else some weeks down the road .. there is some beautiful poetry here.
Gotcha :)
Jim - the reason I say this with almost certainty --- and true - there are no studies to back up my assumptions....
The reason is because --- out of all the people on Kodiak Island --- that I've dealt with... All the folks that have HEPC --- those that are currently treating, etc.... they haven't heard of MedHelp...
Most of them don't even know how to use the internet...
They don't have a clue...
And they don't care to have a clue - I believe, partially - due to the stigma attached... Most people don't want others to know that they have it... Whether they are online or not.
Most of the folks here won't out themselves --- which is fine...
I'm VERY open about HCV. Here on the board and at my work -amongst my friends and to strangers...
I also offer my phone number at the doctor's office for those who are newly diagnosed.
We are a small town - so if you took the numbers here --- and applied them to a per capita rate - I'm under the assumption that geographically folks just don't go looking for answers about HCV unless they are having problems.
The people here don't call me and ask questions UNLESS they are having problems.
So - I might be assuming things - but I think I'm pretty much right on track with the answer or statement.
I don't mind being wrong ---- honestly... It's ok... And I am NO AUTHORITY on many subjects... I can only state what is MY opinion...
IF EVERYONE who had HCV came aboard here ---- that had internet access - this board would be swamped.
Hepatitis C is a VERY wide-spread disease world wide...
So that leads me to believe that only a very small percentage of folks start looking for answers --- when their doctors cannot supply them with the knowledge...
And most of the questions from new folks --- is "HOW COME THIS HURTS" or some such complaint.
Which leads me to believe that assumption is correct.
In fact ---- hearing from my doctors --- they really didn't KNOW that there could be problems... They've treated quite a few people --- and I'm the only one that went beyond feeling "bad"... or so they say...
When I kept going back with more and more problems they were confounded.
So I'm thinking --- I had a decent group of doctors... A very good Liver Specialist in Anchorage --- and a caring doctor group here in Kodiak --- if that happened to me --- it had to happen to others, elsewhere...
And if I am representative of a small group --- then expand that small group to a larger group --- per capita --- and you'll get those kinds of percentages.
Does that make sense?
Anyhow - that's how I came up with my assumption - wasn't trying to sound "authoritative" or any such thing.
I was just speaking my thoughts out... Which is what I always do.
So apologies to you Jim, if I offended you.
But - I'll be honest - I don't think I'm too far off.
AS far as Trin --- and other folks who don't have too many sides --- lucky youse guys...
I'm VERY happy for you --- and I wish EVERYONE had little to no sides. Cause the bad sides are really very bad...
And I certainly wouldn't wish them on anyone... It makes me feel good that there are few folks that have the nightmare sides... Because then I can recommend TX...
IF everyone went through what I went through --- and I know there were much worse cases than mine ---- then I could NEVER recommend TX to anyone at all --- cause I certainly would NEVER do it a second time.
But knowing that others can manage it --- without sides -- that gives me hope for the new folks coming in --- it gives me something to show people who are scared --- and I can say --- Look ---- see ---- here's a person who's doing so very well - with little to no sides --- that can be you!
So - don't be ashamed if you don't have side effects...
It isn't a badge of honor at all to have it either way...
TREATING in ITSELF --- Conquering the emotions and the disease itself is the honor... Realizing that this disease can and does affect anyone and everyone --- from all walks of life ---- that is the badge of honor.
Meki
The reason is because --- out of all the people on Kodiak Island --- that I've dealt with... All the folks that have HEPC --- those that are currently treating, etc.... they haven't heard of MedHelp...
Most of them don't even know how to use the internet...
They don't have a clue...
And they don't care to have a clue - I believe, partially - due to the stigma attached... Most people don't want others to know that they have it... Whether they are online or not.
Most of the folks here won't out themselves --- which is fine...
I'm VERY open about HCV. Here on the board and at my work -amongst my friends and to strangers...
I also offer my phone number at the doctor's office for those who are newly diagnosed.
We are a small town - so if you took the numbers here --- and applied them to a per capita rate - I'm under the assumption that geographically folks just don't go looking for answers about HCV unless they are having problems.
The people here don't call me and ask questions UNLESS they are having problems.
So - I might be assuming things - but I think I'm pretty much right on track with the answer or statement.
I don't mind being wrong ---- honestly... It's ok... And I am NO AUTHORITY on many subjects... I can only state what is MY opinion...
IF EVERYONE who had HCV came aboard here ---- that had internet access - this board would be swamped.
Hepatitis C is a VERY wide-spread disease world wide...
So that leads me to believe that only a very small percentage of folks start looking for answers --- when their doctors cannot supply them with the knowledge...
And most of the questions from new folks --- is "HOW COME THIS HURTS" or some such complaint.
Which leads me to believe that assumption is correct.
In fact ---- hearing from my doctors --- they really didn't KNOW that there could be problems... They've treated quite a few people --- and I'm the only one that went beyond feeling "bad"... or so they say...
When I kept going back with more and more problems they were confounded.
So I'm thinking --- I had a decent group of doctors... A very good Liver Specialist in Anchorage --- and a caring doctor group here in Kodiak --- if that happened to me --- it had to happen to others, elsewhere...
And if I am representative of a small group --- then expand that small group to a larger group --- per capita --- and you'll get those kinds of percentages.
Does that make sense?
Anyhow - that's how I came up with my assumption - wasn't trying to sound "authoritative" or any such thing.
I was just speaking my thoughts out... Which is what I always do.
So apologies to you Jim, if I offended you.
But - I'll be honest - I don't think I'm too far off.
AS far as Trin --- and other folks who don't have too many sides --- lucky youse guys...
I'm VERY happy for you --- and I wish EVERYONE had little to no sides. Cause the bad sides are really very bad...
And I certainly wouldn't wish them on anyone... It makes me feel good that there are few folks that have the nightmare sides... Because then I can recommend TX...
IF everyone went through what I went through --- and I know there were much worse cases than mine ---- then I could NEVER recommend TX to anyone at all --- cause I certainly would NEVER do it a second time.
But knowing that others can manage it --- without sides -- that gives me hope for the new folks coming in --- it gives me something to show people who are scared --- and I can say --- Look ---- see ---- here's a person who's doing so very well - with little to no sides --- that can be you!
So - don't be ashamed if you don't have side effects...
It isn't a badge of honor at all to have it either way...
TREATING in ITSELF --- Conquering the emotions and the disease itself is the honor... Realizing that this disease can and does affect anyone and everyone --- from all walks of life ---- that is the badge of honor.
Meki
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