Aa
Treatment and maintaining a job
One of my main concerns is how I will function in the day to day life activities. I wonder if I will be able to work and do the treatment. I am already so tired all the time. My muscular aches and pains can be overwhelming. I have not started treatment as yet and I also wonder what to tell my job regarding my condition. Any thoughts and comments are appreciated.
They are discussing they treatments that were available on the dates of the posts in 2005
Friole has not posted since July 2007
I expect they were all talking about interferon and Ribavirin as that was all that was available at that time if memory serves
Friole has not posted since July 2007
I expect they were all talking about interferon and Ribavirin as that was all that was available at that time if memory serves
People.. Please post what the treatments you failed, or getting ready to start. Have you even been treated before? etc etc. Nobody can help without this type of information,,,, Just an idea.....
Wow it would be a big help if people would mention some where what treatment, what treated did they Fail etc..
It makes a HUGE help to Help you
It makes a HUGE help to Help you
the tummy woes are most likely riba related. After I finished full dose tx, I continued two more wks on shots and no riba, and my tummy felt much better, even with the hiatal hernia. It does get better after Tx. Like you said, it is not every day.
As for law school, WOW! How is your memory? mine was pretty bad during tx.
As for law school, WOW! How is your memory? mine was pretty bad during tx.
Hello to everyone. I am new to this board so I hope that someone can offer me some advice. I am currently on week 17/48 of treatment. The side effects I am expericing from tx are nausea, vomiting, and severe stomach gas (is that normal?). The side effects aren't everyday. I've been off of work since tx began and I am considering starting Law School. Any advice onto whether I should brave it and start school or wait until tx ends?
Thanks in advance for all your help.
Thanks in advance for all your help.
you too???? My desk is in the fridge/food table area, when we celebrate birthdays, the food is on the table all day! but some of it find its way to my nearby desk, somehow. I did not loose too much wt on tx, I ate everything on sight and did not gain either, it was Heaven... or close to it...then tx ended and 3 months later I was struggling with about 10 lbs...grrr. ( 9mo later still am zipping the 10lbs within my jeans. You definetely have to gain control over it before tx.
and do go back to the nicer dr or find #3, I finished my tx with #3 almost went to 4, for tx extension but did not have to after all.
gl to you
and do go back to the nicer dr or find #3, I finished my tx with #3 almost went to 4, for tx extension but did not have to after all.
gl to you
The story I told was the second opinion. Just felt I needed to try another group as this doctor has a very good reputation. Not so for Nurse Nasty. The nurse is this case appears to run the show so, if I do not feel warm and fuzzy with her now, the future does not look so good either. I may just go back to the old doctor with the nice nurse.
I need to be working on my weight and dropping a few pounds. The doctors would feel much better about treatment. Some things as not as easy as they sound. It is like trying to stop smoking, never started smoking so do not have to quit. However food is another story. It has been the source of instant energy boots at work for a long time (100lbs) now I need to be listing carefully to signals and trying other things to get the boost. Naps, walks, water, vitamins. This has been my struggle. That amd having a desk next to the coffee bar at work, where all the birthday and special occasion food gets left.
I need to be working on my weight and dropping a few pounds. The doctors would feel much better about treatment. Some things as not as easy as they sound. It is like trying to stop smoking, never started smoking so do not have to quit. However food is another story. It has been the source of instant energy boots at work for a long time (100lbs) now I need to be listing carefully to signals and trying other things to get the boost. Naps, walks, water, vitamins. This has been my struggle. That amd having a desk next to the coffee bar at work, where all the birthday and special occasion food gets left.
I would not trust what that nurse or any dr says about hep c. And, no one knows more about YOUR body than you do. You are right in believing that your body might be reacting to the damage already.
I can't believe she said that to you! If you are already too sick to work, doing tx can't be worse and the chance of getting rid of the bug and doing so has to help the liver somewhat, at the very least. Get a new hepatologist and new opinion.
best to you
I can't believe she said that to you! If you are already too sick to work, doing tx can't be worse and the chance of getting rid of the bug and doing so has to help the liver somewhat, at the very least. Get a new hepatologist and new opinion.
best to you
Woke up at 5:30 this morning and began reading all the messages from last week. These postings really are a gift.
I have been measuring the pros/cons of working, starting treatment for a second time and my thinking seems to be in black and white on this subject of health and work. Sooner or later you do begin cheating yourself or your job or both. When I was diagnosed in Dec of 2003, biopsy revealed chirossis. So this has been a part of my life for some 30 to 35 years. I had been working in a very busy stressful office, I thought I was thriving on the fast pace and mental challenge untill I started to fall apart. I began by not speaking what I was thinking. Co-Workers looked at me in wonder or just puzzled. Than I began to realize that I was just not speaking the words I thought I was. Than there is the challenge of learning new processes. Well in a fast paced environment where every thing counts this is just not acceptable. The first round of therapy seemed to slow me down and now the speach is cleared up, however other language and learning skills are just dull.
Than last week, I found myself sleeping a lot. Drive 45 min to work, take an hour nap before going into the office. Getting up in the morning and needing 2 naps before 1pm. Going home and naping. Inbetween I have met with a new Nurse regarding treatment, when I asked her about working while on therapy her response was, if you are too sick to work, you are too sick for therapy. Ouch, that hurt This woman,who by the way also told me it was pointless to need to know what my viral load was if I was not on treatment. (Another story there) So what is the pivital moment, what are the key indicators in the lab work, that tell you you need to step back from your schedule and focus. I keep thinking the doctors know, they keep telling me I am fine and I feel like a putz because I know I can not keep this schedule up.
This forum has also brought up the over 54 and menopause issues.(i am 56) Do any of you in this catagaory find using hormone replacements any help?
My liver has not started to decompensate (fail)the doctors tell me I should be fine, I just do not feel fine. I am applying for LTD Long term disability thru our insurance at work, starting with a reduced workschedule.
DO any of you who have had HEC-c for many years find you are always thinking that the doctors still to not see all of the indicators? That they must still be missing something and do you sometimes feel that the vail between compensated and decompensated liver function is much thinner that we are being told. (Ya that means I have a hard time trusting the medical community) Just wondering if any of the rest of you carry this uneasy feeling around?
Zip
I have been measuring the pros/cons of working, starting treatment for a second time and my thinking seems to be in black and white on this subject of health and work. Sooner or later you do begin cheating yourself or your job or both. When I was diagnosed in Dec of 2003, biopsy revealed chirossis. So this has been a part of my life for some 30 to 35 years. I had been working in a very busy stressful office, I thought I was thriving on the fast pace and mental challenge untill I started to fall apart. I began by not speaking what I was thinking. Co-Workers looked at me in wonder or just puzzled. Than I began to realize that I was just not speaking the words I thought I was. Than there is the challenge of learning new processes. Well in a fast paced environment where every thing counts this is just not acceptable. The first round of therapy seemed to slow me down and now the speach is cleared up, however other language and learning skills are just dull.
Than last week, I found myself sleeping a lot. Drive 45 min to work, take an hour nap before going into the office. Getting up in the morning and needing 2 naps before 1pm. Going home and naping. Inbetween I have met with a new Nurse regarding treatment, when I asked her about working while on therapy her response was, if you are too sick to work, you are too sick for therapy. Ouch, that hurt This woman,who by the way also told me it was pointless to need to know what my viral load was if I was not on treatment. (Another story there) So what is the pivital moment, what are the key indicators in the lab work, that tell you you need to step back from your schedule and focus. I keep thinking the doctors know, they keep telling me I am fine and I feel like a putz because I know I can not keep this schedule up.
This forum has also brought up the over 54 and menopause issues.(i am 56) Do any of you in this catagaory find using hormone replacements any help?
My liver has not started to decompensate (fail)the doctors tell me I should be fine, I just do not feel fine. I am applying for LTD Long term disability thru our insurance at work, starting with a reduced workschedule.
DO any of you who have had HEC-c for many years find you are always thinking that the doctors still to not see all of the indicators? That they must still be missing something and do you sometimes feel that the vail between compensated and decompensated liver function is much thinner that we are being told. (Ya that means I have a hard time trusting the medical community) Just wondering if any of the rest of you carry this uneasy feeling around?
Zip
I wanted to add my good wishes to all the others you've received from your friends here this week. Congratulations on finishing treatment, Califia. You've been a breath of fresh air on this board and you really raised the bar for intelligent and civil discussion. I hope you won't be a stranger now that you're done doing battle with the dragon.
Take care,
Susan
Take care,
Susan
Cuteus wrote above: "I have been paying attention to how people write and I see it a lot with the tx, but also with folks just with hep c status and no tx. or maybe is just aging? grrr"
I'm glad you brought this up. This is one of the most frustrating "symptoms" I have. I have an undergraduate and graduate degree in journalism (I write for a business journal), yet you'd never know it from my spelling and grammar. Actually, it's more of a typing thing. I think I'm typing correctly, but after I re-read what I wrote (usually long after I've hit the send button), I'm horrified. I honestly believe this is HCV-related. My husband is the same age as me and he doesn't have this problem.
Susan
I'm glad you brought this up. This is one of the most frustrating "symptoms" I have. I have an undergraduate and graduate degree in journalism (I write for a business journal), yet you'd never know it from my spelling and grammar. Actually, it's more of a typing thing. I think I'm typing correctly, but after I re-read what I wrote (usually long after I've hit the send button), I'm horrified. I honestly believe this is HCV-related. My husband is the same age as me and he doesn't have this problem.
Susan
I am no well-heeled lady of leisure, but to celebrate the end of treatment I've hired a beautiful young Tibetan ex-monk to clean the house next week. (Not inventing this, I swear.) I'll be durned if I waste whatever energy is being restored to me on mildew removal. Imagine that on a headstone--"Her shower stall was immaculate. Rest in antiseptic peace." Naw, I'm setting my sights a little higher than that!
As for your domestic routine on tx, sounds exactly like small mammal behavior. Maybe there are advantages to adopting gerbil mind (and travel routes), if only temporarily? :) I've been trying hard to find some Buddhist advantage in the simplification and stripping down that happens while on treatment. But yes, it's terribly humbling. No way could I write well or conduct research or grade papers or deliver a lecture or any of that while under the influence. Neuro-linguistic meltdown. And so, my dear, just how much longer do you want to carry on with this? Do you NEED to carry on with this?
As for your domestic routine on tx, sounds exactly like small mammal behavior. Maybe there are advantages to adopting gerbil mind (and travel routes), if only temporarily? :) I've been trying hard to find some Buddhist advantage in the simplification and stripping down that happens while on treatment. But yes, it's terribly humbling. No way could I write well or conduct research or grade papers or deliver a lecture or any of that while under the influence. Neuro-linguistic meltdown. And so, my dear, just how much longer do you want to carry on with this? Do you NEED to carry on with this?
I just read my post and when I saw "unfolded" and I was thinking unfold it, i worried. it happened to me a lot on tx that similar sounding words or phrases were used instead of the actual work, I have been paying attention to how people write and I see it a lot with the tx, but also with folks just with hep c status and no tx. or maybe is just aging?
grrr
one of these days I will show you the pics I took of my apartment as is now, I hope to have the "after" pics to go with them. over 5 yrs of storing and saving...need a dumpster.
I found a forum in delphi; cluttered lives, I will check it out someday. I am also a procrastinator...not a good combo; Pack rat and procrastination.
grrr
one of these days I will show you the pics I took of my apartment as is now, I hope to have the "after" pics to go with them. over 5 yrs of storing and saving...need a dumpster.
I found a forum in delphi; cluttered lives, I will check it out someday. I am also a procrastinator...not a good combo; Pack rat and procrastination.
Ina; and when all four are filled, unfolded, let everything fall under them and open them again...drag on!
Snookie; i am so glad you made so far and in good spirits, and that your HGB held well, that one makes a HUGE difference,as anemia can incapacitate, but mostly it causes aches, fatigue, depression, brain damage and anything oxygen deprived cells and organs can get. It might take God's mind to restore red cells in our blood, but you are right that dragging the body, forcing it to go, will be better in most instances, because the distraction will lessen the dwelling on sides, that is how Lamaze works, by distraction, but the anemia is still there. And many people don't have the stamina to do this daily after their bodies secret battle with HCV for years. I just wish the drs would not let anemia drag in so many folks, and that people would insist on Procrit, if insurance will pay. these are some of the symptoms some people have complained about on tx:
http://www.emedicinehealth.com/articles/4893-3.asp
and then you have to add other conditions that folks have that might add to THAT list, it can be a killer. You and I had it "easy" compared to some.
stay well
Snookie; i am so glad you made so far and in good spirits, and that your HGB held well, that one makes a HUGE difference,as anemia can incapacitate, but mostly it causes aches, fatigue, depression, brain damage and anything oxygen deprived cells and organs can get. It might take God's mind to restore red cells in our blood, but you are right that dragging the body, forcing it to go, will be better in most instances, because the distraction will lessen the dwelling on sides, that is how Lamaze works, by distraction, but the anemia is still there. And many people don't have the stamina to do this daily after their bodies secret battle with HCV for years. I just wish the drs would not let anemia drag in so many folks, and that people would insist on Procrit, if insurance will pay. these are some of the symptoms some people have complained about on tx:
http://www.emedicinehealth.com/articles/4893-3.asp
and then you have to add other conditions that folks have that might add to THAT list, it can be a killer. You and I had it "easy" compared to some.
stay well
Hey! Thanks for asking. All's good. The Hgb held, and I insisted on PCR's at 1 month- and 3 month-post. (Arm wrestled with the nurse who advised me to wait 6 months, but relented when she saw I wasn't going to budge on this.) Then I got a call from the doc who applauded my PCR schedule and suggested that we continue testing every 3 months for a year, even approving a new biopsy in a year's time. Hallelujah! It just takes persistence and jumping through a few hoops. It would help, of course, if there were more actual communication between the doctor and his nurse, who is the one who issues the lab slips and actually oversees treatment. Idiotic, yes indeed. Thanks for the very useful info, tho'. I will definitely file it away for future reference. How are you holding up?
Foreseegood said it very eloquently. All I can do is reduce _one_ of her lucid observations to convenient billboard size for easy recall:
A 28 year-old body handles chemotherapy differently than a 54 year-old one.
Let us not extrapolate from this any conclusions about weakness of character or the powers of positive thinking and all the rest of that simple-minded rot.
Oh, and thanks for your congratulations on my finishing 60 weeks, heavy side effects and all.
A 28 year-old body handles chemotherapy differently than a 54 year-old one.
Let us not extrapolate from this any conclusions about weakness of character or the powers of positive thinking and all the rest of that simple-minded rot.
Oh, and thanks for your congratulations on my finishing 60 weeks, heavy side effects and all.
It seems to me that there are no bad decisions at all regarding working or not working during treatment. Treatment and the associated side effects are so individual that we all need to make the best decision for ourselves and our famililies.
I was prepared to continue working through my 48 week tx. Started out fine and then hit depression and sleep/exhaustion issues around week 19-20. As I sat crying in the bathroom at work one day, I realized that the stress of my daily work was not helping me and I was not doing my employer any favors by being there and not giving it my best. More importantly I was struggling to maintain myself for my family (two young boys, 8 and 5 ).
Fortunately, I have been putting into disability with Jefferson Pilot for several years now and was eligible to apply for STD and got it. This covered me for 13 weeks and now am in the process of going for long term. Don't know yet if I'll qualify but after a phone call from the benefits specialist at JP, I am encouraged. The truth is that this treatment is a tough one for most of us (I haven't heard of many that don't experience some repetoire of the possible side effects) and much to my surprise these private insurance companies do know that. In most cases it is also a temporary medical condition and the sides are reversible when tx is over.
I know that all employers don't offer this benefit and I count myself extremely fortunate that my does. The coverage varies as well. I get ~ 55% of my base salary which helps tremendously but would not be enough if my hubby didn't work as well.
Good health is not overrated and in my opinion, worth focusing on when needed. If that means not working for a while and getting through this tx, then so be it.
I know STD/LTD is not an option for everyone on tx but thought it should be mentioned in this thread.
I was prepared to continue working through my 48 week tx. Started out fine and then hit depression and sleep/exhaustion issues around week 19-20. As I sat crying in the bathroom at work one day, I realized that the stress of my daily work was not helping me and I was not doing my employer any favors by being there and not giving it my best. More importantly I was struggling to maintain myself for my family (two young boys, 8 and 5 ).
Fortunately, I have been putting into disability with Jefferson Pilot for several years now and was eligible to apply for STD and got it. This covered me for 13 weeks and now am in the process of going for long term. Don't know yet if I'll qualify but after a phone call from the benefits specialist at JP, I am encouraged. The truth is that this treatment is a tough one for most of us (I haven't heard of many that don't experience some repetoire of the possible side effects) and much to my surprise these private insurance companies do know that. In most cases it is also a temporary medical condition and the sides are reversible when tx is over.
I know that all employers don't offer this benefit and I count myself extremely fortunate that my does. The coverage varies as well. I get ~ 55% of my base salary which helps tremendously but would not be enough if my hubby didn't work as well.
Good health is not overrated and in my opinion, worth focusing on when needed. If that means not working for a while and getting through this tx, then so be it.
I know STD/LTD is not an option for everyone on tx but thought it should be mentioned in this thread.
Thanks for the kind words guys, you can relate I guess, I'm a little hormonal and wound up these past few days - ech! Hope you have a FAST FORWARD TO YOUR POINT button on your puters, ha! They'd make millions with a patent like that!
Glad you said it. Not that I want to castigate anyone, I'm not a grade school teacher, but I think it's really important that we put opposing views out there for newbies, when indicated. While I think attitude is really important - there is an article put out today how a study found that the reason "placebo" effect worked so well in some people is that people can actually induce their own endorphins for pain if they truly "believe" a drug will work... something we all knew anyway. And I believe that working probably helps many occupy their time while they are going through the treatment time which is probably a lifesaver. But there seems to be many who just can't work, they are too debilitated by the meds, even if they are using other meds to counteract the weakening agents. They shouldn't be made to feel guilty that they are presenting too many symptoms and are too severely weakened by them. I can't forget the time when a well regarded hepatologist told me that my symptoms are probably from some "other" illness (what does that infer?) because I'm only a stage 1 and the only people who really experience hep c symptoms are people who are cirrhotic or esld. I told him that I know people who are cirrhotic and they hardly have any symptoms at all? That he couldn't answer. Guess he just figured they had strong characters and I didn't. It's hard being invalidated like that and I'm ashamed to say that I secretly wished that he would have to walk around in my body for a week and see if he sang the same tune. Thankfully, my present hepatologist says this is too multi-factored and that some can have a high function rate using less of their liver, while others can't. Prolly same thing goes for the meds and how people present.
Just to set the record straight, I'm stage 3 fibrosis.. Genotype 1a, and work a minmum of 40 hours a week. I am a retail service technician, so I travel daily and am on my feet ALL day. No desk job here. I lift heavy objects all day and work with power tools. Of course I don't feel my best all the time, but I suck it up and get the job done. I have maintained full doseage the entirity of of my tx without ANY drugs to compensate, and Dr's have suggested my high Hemo and RBC's to me staying active. I even go to the gym 2 or 3 days a week and do light excercise and lifting.
Difference here, is I REFUSE to sit around and feel sorry for myself. 48 weeks is a long time and if HCV is gonna kill me, I'm not gonna sit around for the time I have left. I'm gonna keep enjoying every minute of it. Yeah, I feel like **** many days of the week, but life goes on, and so will tx. The key to tx is staying active. If you sit around and dwell on your sx's, your gonna go crazy. You have to keep your mind occupied and positive.
Again, the meds are only going to effect YOU, if YOU let them!
Difference here, is I REFUSE to sit around and feel sorry for myself. 48 weeks is a long time and if HCV is gonna kill me, I'm not gonna sit around for the time I have left. I'm gonna keep enjoying every minute of it. Yeah, I feel like **** many days of the week, but life goes on, and so will tx. The key to tx is staying active. If you sit around and dwell on your sx's, your gonna go crazy. You have to keep your mind occupied and positive.
Again, the meds are only going to effect YOU, if YOU let them!
Be great if we all had your body Snook, your other organs, glands, etc. Your age. The whole body is effected by the virus and the meds, not just the liver. And being that you are not a woman, you don't have certain hormonal factors that we have to deal with, ever try menopause and hep c? The liver has a lot to do with the hormones, hormones have a lot do with every body process. Women have this to deal with and have presented a lot more thyroid related factors than men doing tx. Thyroid will kick butt. So many varying factors, too many to name here even if I could. Because of these extraneous factors, genetic factors, it's impossible for me to say, well, I've had this disease close to 30 years and I"m only a stage 1?...what's with you having a stage 3?, buck up why don't ya? Lifestyle does play into it but so do so many other physiological complications. I feel sorry for docs and researchers because they are wading around in a sea of complications that they only have inklings into. DNA is mind boggling.
Truth is some of us have genetic propensities to certain diseases, arthritis, mental conditions, osteo conditions, etc. that can get kicked in prematurely by the meds. What can we do about our genetic backgrounds? Last week my girlfriend and I were drinking some new fruit drink at the health food store, she broke out in a rash all over. I didn't. Was I utilizing some "strength of character or mind control" that she didn't have access to? Nope, she's got a different body than I have, pretty simple.
Truth is some of us have genetic propensities to certain diseases, arthritis, mental conditions, osteo conditions, etc. that can get kicked in prematurely by the meds. What can we do about our genetic backgrounds? Last week my girlfriend and I were drinking some new fruit drink at the health food store, she broke out in a rash all over. I didn't. Was I utilizing some "strength of character or mind control" that she didn't have access to? Nope, she's got a different body than I have, pretty simple.
hi, i'm on week 20 and work part-time. however i'm not as tired as i was b4 tx...if i didnt have to go to work i could stay in bed all day - but knowing i have to go gets me up and out. that and driving kids around all day & night..keeps me busy and on my down time, i rest, and sleep very well at night.
good luck you can do it.
michelle
good luck you can do it.
michelle
I just wanted to apologize to the people who are about to begin tx or considering it. I guess in trying to make my point to Snookman that although there probably are people who sit around and feel "too sorry for themselves" and avoid working, which would make them feel more occupied and help take their minds off tx, I don't think they are in the majority, by any means. I think it more or less shakes down to the fact that there are some people who feel well enough to work on tx, while others just can't, even if they really, really want to and are very mentally motivated. These people shouln't be made to feel guilty with judgments like that. But in trying to make my point, I probably said some scary things about tx and it's possible consequences. I say "possible" because not everyone will experience a lot of negative effects.
I'm the type of person who wants to know all the negative and positive consequences in making this decision, in case I get some of these bad sides - I want to know it's only a side, and I'm not dying, ha ha! But maybe some people just want to go ahead and jump in without knowing all the scary stories and possible outcomes. And I do agree with some that maybe a lot of people are having an okay time with tx so they don't feel the "need" to post. Of course the anxiety surrounding doing the meds can be brutal and not helpful.
I do see a lot of people who are starting out on the meds, and they haven't had the disease too long or they are relatively young, which can only bode well for the sides issue. Age does play a part. The younger you are the younger your immune system is and you can probably take the meds a lot better, stands to reason even though this is not always the case.. . I personally believe that some can wait for better meds, but not all. There are others who belive that all people who have this should go ahead and treat. There are many issues to consider with your doctor for your own particular case.
I'm the type of person who wants to know all the negative and positive consequences in making this decision, in case I get some of these bad sides - I want to know it's only a side, and I'm not dying, ha ha! But maybe some people just want to go ahead and jump in without knowing all the scary stories and possible outcomes. And I do agree with some that maybe a lot of people are having an okay time with tx so they don't feel the "need" to post. Of course the anxiety surrounding doing the meds can be brutal and not helpful.
I do see a lot of people who are starting out on the meds, and they haven't had the disease too long or they are relatively young, which can only bode well for the sides issue. Age does play a part. The younger you are the younger your immune system is and you can probably take the meds a lot better, stands to reason even though this is not always the case.. . I personally believe that some can wait for better meds, but not all. There are others who belive that all people who have this should go ahead and treat. There are many issues to consider with your doctor for your own particular case.
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