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.
The only thing I can add to my post is what you have seen is what you got from both Geterdone and jasper, I lived through my treatment on this board in each and every post, and I can’t change what has been said or done during that time and for the most part laughed through it. Why? Because I had no choice, it was call and it is self preservation of an internal battle both mentally and physically, day in and out, everyday and just to get through it. It was in the first two weeks of treatment the division came and has taken me this long to get’em rebalanced. We all ware masks at times during treatment because of new people coming here for information and what they see is what they get, a mixture of all of it rolled together. What I did learn from here during that time is how to formulate and exit plan that was tailored for me and not solely a doctor’s plan which was at best minimal and for the love of god and the spirit with in me it worked. This place has been a great source of compassion, understanding tolerance, information, and humanity for one and all who show up at its door step.
jasper
jasper
"But if only they could walk a mile"....
..sometimes when zombie-walking to the bathroom in the middle of the night I think.. "dead (wo)man walking".... it makes me mentally giggle, and I kind of stagger in beat.. - I gotta say, I haven't done any type of drugs for years and years, but I really really like my half a sleeper; it's one of the highlights of my day!!!
(When I was first finally prescribed them, after two weeks of sleep deprivation, I took one after being awake all night and most of the next day. My partner and son came to wake me some hours later and I told them that I'd "just been asleep in the most beautiful blue pill". I can't remember saying it but I do remember the dream ...... it was like a giant blue clam shell with cottonwool (and me) inside - obviously love at first sight. I was sooooo relieved, and the tx suddenly seemed a possibility. They are addictive, but were my absolute salvation and if HVC is gone, I'll happily pop them forever... (never thought I'd say that!!)
But, best of all, I DON'T have to wish any of this on my dipsy nurse because she's already living the result of her own spiritual unfolding, and, even on tx, I feel far better off than her. I mean, I really think that if your thyroid is bouncing around at the rate of knots, you're quite likely not going to be able to sleep and excercising from the eyebrows down does NOT work Aaaaaagh lol!!!!! I hope she's better in theatre!!
..sometimes when zombie-walking to the bathroom in the middle of the night I think.. "dead (wo)man walking".... it makes me mentally giggle, and I kind of stagger in beat.. - I gotta say, I haven't done any type of drugs for years and years, but I really really like my half a sleeper; it's one of the highlights of my day!!!
(When I was first finally prescribed them, after two weeks of sleep deprivation, I took one after being awake all night and most of the next day. My partner and son came to wake me some hours later and I told them that I'd "just been asleep in the most beautiful blue pill". I can't remember saying it but I do remember the dream ...... it was like a giant blue clam shell with cottonwool (and me) inside - obviously love at first sight. I was sooooo relieved, and the tx suddenly seemed a possibility. They are addictive, but were my absolute salvation and if HVC is gone, I'll happily pop them forever... (never thought I'd say that!!)
But, best of all, I DON'T have to wish any of this on my dipsy nurse because she's already living the result of her own spiritual unfolding, and, even on tx, I feel far better off than her. I mean, I really think that if your thyroid is bouncing around at the rate of knots, you're quite likely not going to be able to sleep and excercising from the eyebrows down does NOT work Aaaaaagh lol!!!!! I hope she's better in theatre!!
"(confession time)
my greatest evil fantasy all year was to wish I could put my liver doc, my GP, AND my husband all on treatment for a month.. Just one month Lord...that's all I'd ask...let them get a taste of this.....yeah and make it to work...my pittutie!!..
(and then I remember that's naughty and I wouldn't wish this on my worst enemy).
So I repent.... "
Let me add - co-workers...
ROFLMAO!
Oh my gosh - that is about the truth too...
And the hubby one day said - how come you're not in the mood today... LMAO... To make dinner.
That's funny.
I too - repent... sigh... sad --- but true --- But if only they could walk a mile...
Yanno?
my greatest evil fantasy all year was to wish I could put my liver doc, my GP, AND my husband all on treatment for a month.. Just one month Lord...that's all I'd ask...let them get a taste of this.....yeah and make it to work...my pittutie!!..
(and then I remember that's naughty and I wouldn't wish this on my worst enemy).
So I repent.... "
Let me add - co-workers...
ROFLMAO!
Oh my gosh - that is about the truth too...
And the hubby one day said - how come you're not in the mood today... LMAO... To make dinner.
That's funny.
I too - repent... sigh... sad --- but true --- But if only they could walk a mile...
Yanno?
boy we can relate and the majority coming in here have no idea.
the clinic I go to had a 2 hr preparatory class and it STILL only scratched the surface of what was coming.
Maybe they figured better to keep it HCV 101 lite or no one would treat.
I thank God I wanted to know more and found this board.
It was this forum that prepared me in advance, and though not everybody gets every side, sides do abound. Rather like a Holiday meal, except stuffed in a not so good way!
IN any case, at least with the support you can get through it, and it helps resolve issues with docs, and helps educate those wanting to kick B on this disease.
You are right though....whenever I go in, and they tell me how fine I'm doing, or how well I'm tolerating treatment all I can think is....they really don't have clue ONE do they.
In fact.....
(confession time)
my greatest evil fantasy all year was to wish I could put my liver doc, my GP, AND my husband all on treatment for a month.. Just one month Lord...that's all I'd ask...let them get a taste of this.....yeah and make it to work...my pittutie!!..
(and then I remember that's naughty and I wouldn't wish this on my worst enemy).
So I repent....
But cheer up...it only feels like 12 years rather than 12 months of your life....
eventually even this shall pass....although some days I think solitare at Alcatraz would have been preferable to the last year in my comfy bed with these meds.
You mentioned dragging Marc, are you on Procrit yet? Antidepressants?
Where is your red and white cout at now?
mb
the clinic I go to had a 2 hr preparatory class and it STILL only scratched the surface of what was coming.
Maybe they figured better to keep it HCV 101 lite or no one would treat.
I thank God I wanted to know more and found this board.
It was this forum that prepared me in advance, and though not everybody gets every side, sides do abound. Rather like a Holiday meal, except stuffed in a not so good way!
IN any case, at least with the support you can get through it, and it helps resolve issues with docs, and helps educate those wanting to kick B on this disease.
You are right though....whenever I go in, and they tell me how fine I'm doing, or how well I'm tolerating treatment all I can think is....they really don't have clue ONE do they.
In fact.....
(confession time)
my greatest evil fantasy all year was to wish I could put my liver doc, my GP, AND my husband all on treatment for a month.. Just one month Lord...that's all I'd ask...let them get a taste of this.....yeah and make it to work...my pittutie!!..
(and then I remember that's naughty and I wouldn't wish this on my worst enemy).
So I repent....
But cheer up...it only feels like 12 years rather than 12 months of your life....
eventually even this shall pass....although some days I think solitare at Alcatraz would have been preferable to the last year in my comfy bed with these meds.
You mentioned dragging Marc, are you on Procrit yet? Antidepressants?
Where is your red and white cout at now?
mb
Wow! So glad you brought this to the table
I was on this site reading a lot prior to tx. I loved reading responses to "Can I work on tx?" I was scared to start tx, I put it off for months.
I interviewed the only two medical teams that I knew txed hep c, and was very disappointed with both of them.
They were like a salesperson that will tell you anything to get you to buy in the beginning, then ignores you if you complain about the purchase.
I'm not saying that the dr's made a lot of money from my tx, but the compassion and caring disappeared quickly when I was calling about nausea, anemia and itching
I learned more from this site than from the medical "experts" and I'm an allied health professional myself. I expected more communication and knowledge from them. I had to force the issue of an early pcr and write the name of the test for my dr who had never heard of it. H-e-p-t-i-m-a-x!! (Thanks to you know who you are)
I did work, but missed more than one day, always felt like a wienie because of people like Nygirl! She treated longer and never missed work, so I felt embarrassed to admit I felt like **** and was quitting tx early.
I stopped at 16 weeks, and luckily, was clear at my 6 months post pcr.
I'm so glad you started this"I'm sick to death and not going to take this anymore!" thread....(actually that's a book title on health care reform, and an idiom that's pretty popular too...I like idioms)
Bug
I was on this site reading a lot prior to tx. I loved reading responses to "Can I work on tx?" I was scared to start tx, I put it off for months.
I interviewed the only two medical teams that I knew txed hep c, and was very disappointed with both of them.
They were like a salesperson that will tell you anything to get you to buy in the beginning, then ignores you if you complain about the purchase.
I'm not saying that the dr's made a lot of money from my tx, but the compassion and caring disappeared quickly when I was calling about nausea, anemia and itching
I learned more from this site than from the medical "experts" and I'm an allied health professional myself. I expected more communication and knowledge from them. I had to force the issue of an early pcr and write the name of the test for my dr who had never heard of it. H-e-p-t-i-m-a-x!! (Thanks to you know who you are)
I did work, but missed more than one day, always felt like a wienie because of people like Nygirl! She treated longer and never missed work, so I felt embarrassed to admit I felt like **** and was quitting tx early.
I stopped at 16 weeks, and luckily, was clear at my 6 months post pcr.
I'm so glad you started this"I'm sick to death and not going to take this anymore!" thread....(actually that's a book title on health care reform, and an idiom that's pretty popular too...I like idioms)
Bug
Argh.. okay.. don't quite agree with EVERY word... "On the other side -- the tx is manageable crowd -- I often get the feeling that because tx was manageable for them, then it is for everyone. Which just isn't true."
I'm going to very carefully say that I think you're attributing sentiments to the "my tx is manageable" group that aren't there to the extent you think. My treatment is manageable for me but I would never put that on someone else. I think anyone HERE knows better just from reading all the posts from people. I think MOST of us are in the "treatment is a cr@pshoot and different for each person" camp. As I've said .. I think my doc's approach to say "are you ready for a year of hell" is more apropros than to water it down .. because it CAN be hell and it's a bloody long time to be in treatment if you're not fully prepared (as much as one can prepare, as the point has been made) for what can come along and nobody has any clue what treatment will be like for themselves or anyone else so better to be prepared for what can happen and have your contingency plans ready. A buddy of mine offered his place for me to stay if I had to stop working and didn't have an income. He drives longhaul and is gone most of the time. While I didn't want it to come to that, it sure was a nice thing to have in my back pocket.
Anyway...I simply think the "treatment is a cr@pshoot and different for each person" outlook prevails for most people here regardless of their own treatment experiences. That's my observation from watching responses to new people asking about it. Just making a comment and an observation and not an argument.
Trish
I'm going to very carefully say that I think you're attributing sentiments to the "my tx is manageable" group that aren't there to the extent you think. My treatment is manageable for me but I would never put that on someone else. I think anyone HERE knows better just from reading all the posts from people. I think MOST of us are in the "treatment is a cr@pshoot and different for each person" camp. As I've said .. I think my doc's approach to say "are you ready for a year of hell" is more apropros than to water it down .. because it CAN be hell and it's a bloody long time to be in treatment if you're not fully prepared (as much as one can prepare, as the point has been made) for what can come along and nobody has any clue what treatment will be like for themselves or anyone else so better to be prepared for what can happen and have your contingency plans ready. A buddy of mine offered his place for me to stay if I had to stop working and didn't have an income. He drives longhaul and is gone most of the time. While I didn't want it to come to that, it sure was a nice thing to have in my back pocket.
Anyway...I simply think the "treatment is a cr@pshoot and different for each person" outlook prevails for most people here regardless of their own treatment experiences. That's my observation from watching responses to new people asking about it. Just making a comment and an observation and not an argument.
Trish
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.
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
Wow, this is certainly a loaded thread. As one who is waiting to begin tx, I'd like to post my thoughts.
My originial GE just jammed thru tx & sx...I knew he was an idiot when I met him, I was not comfortable with him, his manner or his outlook. I started looking for posting like this one...Here, I got the truth. And it didn't scare me...it prepared me for the worst case.
I immediatly changed healthcare providers, to an NP who has been treating this virus since 1989. She travels to 4 locations within her work week...this lady is devoted. And she is my biggest cheerleaders, cuz' I know I'm going to need one.
I am not expecting this to be easy. The alternative is unacceptable. I WILL do this... I'm a tough cookie and I expect this to be the hardest thing I've ever done...I'm doing it for ME...for my health, for my life...I want the rest of my life back, and if I have to sacrifice a year to get the other 24 years, (or whatever) back, then it's a no brainer.
Finally, after all these years of being a b***h, I expect it to pay off...in spades.
I know that not everyone is tough..because we're human, (just like doctors).
So, not all doctors are excellent doctors (What do you call a doctor who graduated with a C- average? You call them "doctor"). & not all patients are good patients.
When I have bad days, I'll expect that I'll come here for sympathy...I'll do this tx...for me...so that I can have my life back. This virus will not be the end of me.
My originial GE just jammed thru tx & sx...I knew he was an idiot when I met him, I was not comfortable with him, his manner or his outlook. I started looking for posting like this one...Here, I got the truth. And it didn't scare me...it prepared me for the worst case.
I immediatly changed healthcare providers, to an NP who has been treating this virus since 1989. She travels to 4 locations within her work week...this lady is devoted. And she is my biggest cheerleaders, cuz' I know I'm going to need one.
I am not expecting this to be easy. The alternative is unacceptable. I WILL do this... I'm a tough cookie and I expect this to be the hardest thing I've ever done...I'm doing it for ME...for my health, for my life...I want the rest of my life back, and if I have to sacrifice a year to get the other 24 years, (or whatever) back, then it's a no brainer.
Finally, after all these years of being a b***h, I expect it to pay off...in spades.
I know that not everyone is tough..because we're human, (just like doctors).
So, not all doctors are excellent doctors (What do you call a doctor who graduated with a C- average? You call them "doctor"). & not all patients are good patients.
When I have bad days, I'll expect that I'll come here for sympathy...I'll do this tx...for me...so that I can have my life back. This virus will not be the end of me.
Regarding the in-house hospital care .. there are respite houses here in Canada, don't know if there is anything like that in the U.S. .. but I bet they haven't considered respite here for people going through Hep C treatment although it's certainly crossed MY mind .. not so much for me although I did think some of the in-home services might be nice when I got fed up with the state of my house and how it impacted me mentally to not be able to tidy up and I'm not a clean freak, I just like things reasonably clean. I don't know what you have for in-home care services in the U.S. but I'd sure like to see that extended to people with Hep C here in Canada. I sure hope to see those kinds of changes.
Fret... VERY good article. You've become very good at digging these up. :)
Trish
Fret... VERY good article. You've become very good at digging these up. :)
Trish
Jim...I just wanted to say I agree with every word you said. Particularly on the perspective .. I didn't mean to say that only YOU are influenced by your own experience. As you put it so well, we all are .. and that's what I meant by "which is totally expected" .. it's the way of things for all of us. I wouldn't be a bit surprised to know that some people don't post so they don't scare other people. Some things I went through I didn't post. There wasn't any point. I was just busy dealing with it and nothing anyone could do but me.. so there wasn't anything to say. I just know I kept quiet on some OTHER things also because I didn't want to discourage people who weren't able to do some of the things I've managed over treatment. We are all individuals and some of what I did ove
r treatment was pure survival tactic because of who I am personally and how my experiences have shaped me to cope with life but how do I explain that to someone. I just think it's important to hear ALL of this. ALL of it.
I'm glad you posted again, Jim .. I wanted to say that I hope you do .. as your perspective is very important to this discussion, everybody's is... but particularly for those that had a hard time and regardless of what you say, Jim.. you had it pretty rough. I know some others had it rougher.. but you had it rough in a whole lot of ways. That's all I'm gonna say about that. Well. except to say .. and here you are lending incredibly valuable support to other people going through this after you're already done and through this. I have learned so much from you, Jim and my treatment has been so much more successful as a result of you and all the people on this forum for which I'm deeply grateful.
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The one thing we'd all be unanimous on is that no two treatments are alike. This is so different for each person and there is NO way of predicting how bad it will be. I guess that's why I like my second treatment doctor's approach in asking if I'm ready for a year of hell .. sounds like that's a rare approach from what I'm reading here and from what I've read here over the past year.
It's good to hear stories such as nygirl's where her GI says he's learned so much and was decent and authentic enough to tell her that she knew more than he did and that it will benefit his next patients. I don't think you hear that too often.
So I wonder how this all gets changed. Is it the hepatologists who have to take on some of the responsibility? I'm wondering what advocacy exists out there for persons with Hep C? There is a really large group in the U.S. for this, is there not? The Penny person who was someone else before that... she plays a big role in this group? (See if she'll pop into this .. :) Wonder if they're doing anything in this particular area? I know I've been thinking we *badly* need this in Canada .. I see the same kinds of things here only from a slightly different angle because of two different healthcare systems but similar situations nonetheless.
A big "hmmmmmmm" going on in my head.......
*Great* discussion.
Trish
r treatment was pure survival tactic because of who I am personally and how my experiences have shaped me to cope with life but how do I explain that to someone. I just think it's important to hear ALL of this. ALL of it.
I'm glad you posted again, Jim .. I wanted to say that I hope you do .. as your perspective is very important to this discussion, everybody's is... but particularly for those that had a hard time and regardless of what you say, Jim.. you had it pretty rough. I know some others had it rougher.. but you had it rough in a whole lot of ways. That's all I'm gonna say about that. Well. except to say .. and here you are lending incredibly valuable support to other people going through this after you're already done and through this. I have learned so much from you, Jim and my treatment has been so much more successful as a result of you and all the people on this forum for which I'm deeply grateful.
-------------------------------------------------------------------------------------------
The one thing we'd all be unanimous on is that no two treatments are alike. This is so different for each person and there is NO way of predicting how bad it will be. I guess that's why I like my second treatment doctor's approach in asking if I'm ready for a year of hell .. sounds like that's a rare approach from what I'm reading here and from what I've read here over the past year.
It's good to hear stories such as nygirl's where her GI says he's learned so much and was decent and authentic enough to tell her that she knew more than he did and that it will benefit his next patients. I don't think you hear that too often.
So I wonder how this all gets changed. Is it the hepatologists who have to take on some of the responsibility? I'm wondering what advocacy exists out there for persons with Hep C? There is a really large group in the U.S. for this, is there not? The Penny person who was someone else before that... she plays a big role in this group? (See if she'll pop into this .. :) Wonder if they're doing anything in this particular area? I know I've been thinking we *badly* need this in Canada .. I see the same kinds of things here only from a slightly different angle because of two different healthcare systems but similar situations nonetheless.
A big "hmmmmmmm" going on in my head.......
*Great* discussion.
Trish
I'm ashamed to say that there were a few times when I felt so amazingly awful, that I too compared this to feeling like death without dying.
I was very peeved when I got here, week 2 into tx. Every single person involved with my care said "you'll be fine." My GI wouldn't give me a note to get off of the on-call schedule at work the week before tx. She said "you'll be fine." I was supposed to work 40-50 hours a week, be on-call for 60 hours over the weekend and then work 40-50 hours again and be fine? The second week of tx I got FMLA papers from work and *demanded* that they be filled out.
I was never told to start the Riba the morning of tx. I was told by a nurse from Pegasys to take as much Tylenol as I needed and I would be fine. Then I found out that more than 4 per day was dangerous.
*Nothing* prepared me for this. I tried to read about tx before I started but finding out that people were flat for most of tx was more than I could handle. Plus, I spent months going from one test to another before my GI would treat. I had an ultrasound, endoscopy, colonoscopy, sigmoidoscopy, high-contrast CAT, liver bx, retina and psyche exam before my doctor would consider treatment. By the time that 8 months of he!! was over, I was desperate to get this thing out of my body.
I stopped complaining after the third week. I've missed two days of work because of either violent migraine or wicked diarrhea and too weak to stand. I force myself to get out every day for my job.
I work for a nurse-driven profession. I try to stay out of the office because I'm sick of hearing "how are you? you look great!" I seriously want to slap someone. I've had to chop off most of my hair, I have reddish black bags under my eyes, I've lost about 20 pounds and there are huge red spots all over my face and body, but hey, I look great.
I'm so glad.
Thank you for letting me vent in your thread and I agree completely. If (and I pray never) I ever have to do this again, I will save like a greedy pig for as long as I can and not deal with this pressure.
I was very peeved when I got here, week 2 into tx. Every single person involved with my care said "you'll be fine." My GI wouldn't give me a note to get off of the on-call schedule at work the week before tx. She said "you'll be fine." I was supposed to work 40-50 hours a week, be on-call for 60 hours over the weekend and then work 40-50 hours again and be fine? The second week of tx I got FMLA papers from work and *demanded* that they be filled out.
I was never told to start the Riba the morning of tx. I was told by a nurse from Pegasys to take as much Tylenol as I needed and I would be fine. Then I found out that more than 4 per day was dangerous.
*Nothing* prepared me for this. I tried to read about tx before I started but finding out that people were flat for most of tx was more than I could handle. Plus, I spent months going from one test to another before my GI would treat. I had an ultrasound, endoscopy, colonoscopy, sigmoidoscopy, high-contrast CAT, liver bx, retina and psyche exam before my doctor would consider treatment. By the time that 8 months of he!! was over, I was desperate to get this thing out of my body.
I stopped complaining after the third week. I've missed two days of work because of either violent migraine or wicked diarrhea and too weak to stand. I force myself to get out every day for my job.
I work for a nurse-driven profession. I try to stay out of the office because I'm sick of hearing "how are you? you look great!" I seriously want to slap someone. I've had to chop off most of my hair, I have reddish black bags under my eyes, I've lost about 20 pounds and there are huge red spots all over my face and body, but hey, I look great.
I'm so glad.
Thank you for letting me vent in your thread and I agree completely. If (and I pray never) I ever have to do this again, I will save like a greedy pig for as long as I can and not deal with this pressure.
I found treatment very difficult, from the intial 42c reaction, to the weight loss (50 pounds), and mood swings. At the end of the day though, I have minimal lasting side effects (just a bit of nerve damage). I think there is a tendency to thump our chest and yell out loud "I am so strong, for I did this", but to some extent, I think it is whining / attention seeking, which can mislead those considering treatment. There are lots of horrible things in life, I can't imagine how bad cancer chemo must be (having to face up to a more immediate death risk), or many other conditions. Like a lot of things, the mental attitude of someone going in, is probably as important to how "hard" they consider treatment to have been, as the physical effects themselves.
In saying all of that, I sure hope they come up with a "nicer" treatment soon :-)
In saying all of that, I sure hope they come up with a "nicer" treatment soon :-)
“I once likened it to dying without the relief of death”
Best Description I’ve ever Heard
Best Description I’ve ever Heard
I can relate and agree with you. I had to think back since I am coming up on 5 mos post tx and have tx amnesia. I remember in the begining feeling so sick in so many ways and then becoming overwhelmed with every aspect of life while trying to work each day and being mostly terrified/scared to death type of feeling. I would feel so sick that I got really scared and always felt like I was seconds away from calling 911. It was pretty 'horrid' to say the least during those moments and yes I felt completely alone and no one can relate EXCEPT people that have completed tx or are currently tx'ing etc. I remember my NP telling me that she had construction workers tx'ing and doing just fine LOL. The upside to tx is that YOU WILL FINISH IT eventually and live to talk about it.
TV
TV
Nope not as much as a drop. Ever.
I learned to carry my own in my bag because it was that crucial to always have around. That first time being unprepared without having water with me was like being in a desert and thinking I wouldn't make it out.
I learned to carry my own in my bag because it was that crucial to always have around. That first time being unprepared without having water with me was like being in a desert and thinking I wouldn't make it out.
I have been offered bottled water on every appointment with my NP....also yogurt with granola when given meds.
Here's a little story – as I mentioned in my original post, I also happen to be under the care of an oncologist, a breast specialist of all things though I'm a guy. This morning was an appointment. The woman in front of me was signing in. The receptionist asked her how she was holding up and if she could use anything to eat.
This is not some touchy, feely little clinic but a major research hospital, but they still took the time to make sure this woman, who I assume was undergoing treatment, had adequate nutrition to make it through the visit.
Would it kill our providers and their attendants to offer us a glass of water when we go to the waiting room? Hydrating is very important and a major challenge. Have you ever been offered a glass of water by a medical professional, even someone who supposedly understands this treatment? I'm going to be shocked if anyone says yes. I really think the medical professionals minimize the challenge of the sides for HCV treatment.
Thanks to everyone for your incredibly thoughtful comments and perspectives. It is much easier to feel you have some support and understanding.
This is not some touchy, feely little clinic but a major research hospital, but they still took the time to make sure this woman, who I assume was undergoing treatment, had adequate nutrition to make it through the visit.
Would it kill our providers and their attendants to offer us a glass of water when we go to the waiting room? Hydrating is very important and a major challenge. Have you ever been offered a glass of water by a medical professional, even someone who supposedly understands this treatment? I'm going to be shocked if anyone says yes. I really think the medical professionals minimize the challenge of the sides for HCV treatment.
Thanks to everyone for your incredibly thoughtful comments and perspectives. It is much easier to feel you have some support and understanding.
THIS is why this forum is so important to those who are treating or considering treatment. With out the info gathered here I would have been totally unprepared for this. My sx have been managable ONLY because of the advice and preperation I recieved here. To those that have completed treatment, SVR or not, a heart felt thanks for sticking around and helping. jerry
You know, I think in some cases and I don't mean anyone here at all, people convice themselves they are going to have bad sides, so do.
I know when I treated on Peg and Pyg, I had few sides, except emotional ones. on pyg I did have low HGB. After a few weeks on both I leveled out, my body adjusted, and while not the most pleasant experience, I did it.
I have been lucky though and had good GIs, who paid attention.
But I know there is some awful GIs out there, who haven't a clue, I think that is why ADVOCATING for your self is so IMPORTANT. You have to know what your labs mean, You have to speak up, if they don't want to hear it, get another opionion. That is your right.
I don't think anyone is ever fully prepared either. I think we all react different, we all have different body chemistrys, pre existing health problems,
It is a tough road for sure, we do have a bonus, we have each other, for facts and "studies" but for comfort also.
DEb
I know when I treated on Peg and Pyg, I had few sides, except emotional ones. on pyg I did have low HGB. After a few weeks on both I leveled out, my body adjusted, and while not the most pleasant experience, I did it.
I have been lucky though and had good GIs, who paid attention.
But I know there is some awful GIs out there, who haven't a clue, I think that is why ADVOCATING for your self is so IMPORTANT. You have to know what your labs mean, You have to speak up, if they don't want to hear it, get another opionion. That is your right.
I don't think anyone is ever fully prepared either. I think we all react different, we all have different body chemistrys, pre existing health problems,
It is a tough road for sure, we do have a bonus, we have each other, for facts and "studies" but for comfort also.
DEb
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