Aa
Treatment or not?
Thank you Pooh, cliff and BoceprivGal. I so appreciate all the information. I guess what bothers me so much is I was ready to handle any side effect that I came across and was ready for the worst until my doctor started giving me the run around about taking time off. His explanation was..."if it makes you bad enough you cant work...then I would stop the treatment" He says mine isnt bad enough to put me through that at this point. ??? What??? I have had second thoughts every since. I just dont think I could do this and still hold a full time job driving a fork lift especially not having the support of my doctor and having to worry abuot losing my job because he wont sign some papers
I tend to agree with James, about waiting if your liver is healthy.
Whatever you decided to do, you need a doctor you feel good about.
You don't want to be having difficulties when you are under medication and suddenly realizing your doctor just isn't there for you.
Find one you trust.
Whatever you decided to do, you need a doctor you feel good about.
You don't want to be having difficulties when you are under medication and suddenly realizing your doctor just isn't there for you.
Find one you trust.
"I totally disagree that "if it makes you bad enough you can't work .. then I would stop the treatment." That is just crazy and I feel it is irresponsible (as well as ignorant) for a doctor to say something like that."
I don't know. Perhaps the body's short term reaction to the drugs is some indicator as to the likelihood of significant long term side effects.
I don't know. Perhaps the body's short term reaction to the drugs is some indicator as to the likelihood of significant long term side effects.
If it were me and it may be, b/c of possible relapse I'd wait until 2014 if you liver isn't stage 3or4. GS-7977 and the BMS drug look promising. Ofcourse there are no guarantees.
I have been able to work during triple therapy. I do not have a terribly physical job, but I do have a mental job both brain wise and stress wise. I am 9.5 weeks into treatment and have only missed 5 days of work, one of those days I purposely took off since it was day after my first shot and two of other days, I could have totally gone in just didn't want to. Your Dr. is assuming the worst for you? I don't know all of the circumstances, but your Dr said if sides got so bad he would stop treatment makes no sense. You have no idea how you will respond to treatment and neither does you Dr. I have relatively few side effects and many people do not. Side effects that come can be managed. The fatigue does set in from the anemia, but, I and I know of many people who still work fulltime. I have no idea how my liver really is. My Dr said treat since I had very good chance of responding based on my history, so here I am. And UND at 4 weeks according to test but I know I probably was at 2 weeks. Have had HCV for 37 years just diagnosed this January, G 1a. If you decide to treat, just worry about things as they come. There are legal ways to protect you and your job if needed that have been mentioned. Have you talked to your supervisor, may be more accomodating than you think.
Hi thank you for the add and i have some questions to ask
Sentinel is correct about the brain fog. I have major difficulty concentrating and focusing and staying on topic. I cannot even read a book or work on my geneology, which I love, and which is second nature to me. I also caught myself putting postage stamps on the wrong side of the envelope. I caugtht it only when I went to apply the addres labels and realized the stamps were where the address labels were supposed to be. I did this more than once. I also kept driving past my exit when I was on a freeway. I just could not hold a thought long enough to get me off on the right exit. It took me three tries to finally remember to get off at the correct exit. I had to keep turning around and going the other direction after I realized I had passed the exit (about 5 miles down the road). I can sort of see missing it once, maybe, but twice, is a bit much, especially when I had already missed it once and knew I had to head back and get off. But, I missed it again, lol. I just spaced out.
So yes, I agree, a precision job where one has to think straight and be alert might be a problem. I told someone else (an electrician) that I would not want to be climbing poles or working around electricity while on these meds. One fal;se move and it's your life (or someone elses).
The other thing I did not mention is the overwhelming fatigue. I know I said fatigue, which we all get, but besides the normal fatigue these drugs give you, periodically, usually 2-3 times a day, I get overwhelmingly fatigued. I am suddenly so tired (my whole body) that it makes me nauseated and I feel like I just cannot stay upright. I feel like I might pass out. I have to lay down or sit in the recliner and recline back. There is no indication when these extreme fatigue bouts will come on, although it is usually after I have been up walking around or working on something like cleaning or after I have gone out to grocery shop or something (anything that taxes my body).
So yes, I agree, a precision job where one has to think straight and be alert might be a problem. I told someone else (an electrician) that I would not want to be climbing poles or working around electricity while on these meds. One fal;se move and it's your life (or someone elses).
The other thing I did not mention is the overwhelming fatigue. I know I said fatigue, which we all get, but besides the normal fatigue these drugs give you, periodically, usually 2-3 times a day, I get overwhelmingly fatigued. I am suddenly so tired (my whole body) that it makes me nauseated and I feel like I just cannot stay upright. I feel like I might pass out. I have to lay down or sit in the recliner and recline back. There is no indication when these extreme fatigue bouts will come on, although it is usually after I have been up walking around or working on something like cleaning or after I have gone out to grocery shop or something (anything that taxes my body).
I agree with Pooh, you definitely need to get a second opinion on this from a really good doc. A lot of people on here recommend Paul Y. Kwo, MD at the Indiana University School of Medicine in Indianapolis, IN. I know that's a few hours away from you, but they may have a referral service. He is supposed to be really good, very experienced in the research, up on the latest.
You need a very good opinion on this; you are young and depending upon your particular health status this could be the optimum time for you to tx, or it may be okay for you to wait and see what the new tx may offer soon that won't have the debilitating side effects, who knows but a good doctor?
First and foremost, you need someone who really knows their stuff on this and take their advice. Good luck and take good care of yourself by making sure you are doing the best thing for yourself.
You need a very good opinion on this; you are young and depending upon your particular health status this could be the optimum time for you to tx, or it may be okay for you to wait and see what the new tx may offer soon that won't have the debilitating side effects, who knows but a good doctor?
First and foremost, you need someone who really knows their stuff on this and take their advice. Good luck and take good care of yourself by making sure you are doing the best thing for yourself.
Hi DTG36: If you haven't already, suggest familiarizing yourself with the Family & Medical Leave Act (http://www.dol.gov/whd/fmla). FMLA provides 12 weeks of job protected leave to people with serious medical conditions who are unable to perform the essential functions of their jobs.
In advance of treatment, you may want to ask your personnel department to provide you with the essential functions of your job. Also suggest reviewing your company's Policies & Procedures manual to determine if your company provides leave that goes above and beyond what is authorized by FMLA.
Your doctor's support is necessary to receive FMLA leave.
As Pooh pointed out, there are different reasons why someone might not be able to work during treatment. I was unable to work for many of the reasons Pooh itemized plus (and probably most importantly) my severe brain fog.
Driving a forklift requires judgement, alertness, hand-eye coordination, spatial orientation, concentration, and possibly night vision (which can be adversely affected by the hemolytic anemia).
The treatment may, or may not, affect your ability to perform the essential functions of your job. In my opinion, no one can know with certainty, in advance, whether or not your treatment will affect your ability to perform your job. Suggest getting a doctor who is going to keep an open mind on this topic. Cheers, GB
In advance of treatment, you may want to ask your personnel department to provide you with the essential functions of your job. Also suggest reviewing your company's Policies & Procedures manual to determine if your company provides leave that goes above and beyond what is authorized by FMLA.
Your doctor's support is necessary to receive FMLA leave.
As Pooh pointed out, there are different reasons why someone might not be able to work during treatment. I was unable to work for many of the reasons Pooh itemized plus (and probably most importantly) my severe brain fog.
Driving a forklift requires judgement, alertness, hand-eye coordination, spatial orientation, concentration, and possibly night vision (which can be adversely affected by the hemolytic anemia).
The treatment may, or may not, affect your ability to perform the essential functions of your job. In my opinion, no one can know with certainty, in advance, whether or not your treatment will affect your ability to perform your job. Suggest getting a doctor who is going to keep an open mind on this topic. Cheers, GB
Hey, You~ Is there anyway you can apply for temporary disability, and resume your job, when you finish treatment?
If your liver is fibrotic, I think you should treat it, while you are still young, and with energy! Once I got in my late forties, I got tons more symtoms, and often times wish I had treated, when I was around 40 yrs old, but I was having the babies ; /
The Doctors actually want to see your HGB drop, from taking the meds, and once the HGB is low (hemolytic anemia) they have "rescue drugs", but mine have taken about two weeks to kick in. I have to admit, there is NO WAY I could've driven a fork-lift this week!!! But I am older then you, also...and some people only hve mild anemia.
Maybe some of the guys can come thru here, and let us know if they were able to work, during Triple TX. I take care of Elderly people, so I can kind of work my frailness into the whole scenario, but I am only working morning shift. I dont get totally tired, until around 6 pm, and tommorow I will be on week 10, of the triple Therapy, with Victrelis
If your liver is fibrotic, I think you should treat it, while you are still young, and with energy! Once I got in my late forties, I got tons more symtoms, and often times wish I had treated, when I was around 40 yrs old, but I was having the babies ; /
The Doctors actually want to see your HGB drop, from taking the meds, and once the HGB is low (hemolytic anemia) they have "rescue drugs", but mine have taken about two weeks to kick in. I have to admit, there is NO WAY I could've driven a fork-lift this week!!! But I am older then you, also...and some people only hve mild anemia.
Maybe some of the guys can come thru here, and let us know if they were able to work, during Triple TX. I take care of Elderly people, so I can kind of work my frailness into the whole scenario, but I am only working morning shift. I dont get totally tired, until around 6 pm, and tommorow I will be on week 10, of the triple Therapy, with Victrelis
Every time I see my doctor she reminds me that if it gets too tough for me she will sign disability papers, all I have to do is say the word...I've been ok though, I don't really want to do disability unless I absolutly couldn't work, but so far so good. I only have 11.5 weeks to go, I think I will be able to push through it.
Although i am only doing dual therapy, which is not as tough as triple. I'm not sure what treatment you will be doing
Although i am only doing dual therapy, which is not as tough as triple. I'm not sure what treatment you will be doing
It is unfortunate your doctor won't cooperate. I am not sure why they are so reluctant to treat Hep C like they would any other disease. They should at least be open to the fact that you may not be able to work. If you can, fine. But the doc needs to be aware that you may need to rely on another option (vacation, sick time, disability leave, etc.) at some point in your treatment..
I totally disagree that "if it makes you bad enough you can't work .. then I would stop the treatment." That is just crazy and I feel it is irresponsible (as well as ignorant) for a doctor to say something like that. There are many people on this forum who could not work, many with severe anemia or severe nausea and vomiting or severe fatigue or bad rashes and itching. Those people did not quit treatment (except for a very few with very, very severe, life threatening rashes and allergic reactions). But the rest of us continued treatment. There are people here with cirrhosis who already have the deck stacked against them. They are getting through treatment with the help and understanding of their doctors. There are people here getting transfusions frequently, taking Procrit or Neupogen a few times a week, taking meds for nausea and the rash and itching, etc. We are toughing it out, but to do that, we need the doctors to understand.
As noted, you may be able to work. Many do. Many work all during treatment. Some do light work. Some do part time work. Some take sick days or vacation as needed. Some take a leave. Some work as long as they can and then take a leave if they just cannot continue. If your side effects are mild, you will probably be able to work (although I don't know about driving a forklift...maybe someone else can comment on that). But you could get severe anemia like some do. Anemia will make you incredibly tired and weak and short of breath, and while anemia is no reason to stop treatment, you may have to stop working.
Personally, I could not have done my job. I am retired, but I was a registered nurse working long hours in a highly physically and mentally demanding job. There is no way I could have done that job on treatment. Howebver, had they given me a desk job which was part time, I probably could have done it.
Can you get a different doctor, a hepatologist, one who is experienced in treating Hep C patients, maybe at a large medical center or university affiliated medical center. That is a potential option.
Keep us posted. I hope this can be worked out for you so that you can treat.
I totally disagree that "if it makes you bad enough you can't work .. then I would stop the treatment." That is just crazy and I feel it is irresponsible (as well as ignorant) for a doctor to say something like that. There are many people on this forum who could not work, many with severe anemia or severe nausea and vomiting or severe fatigue or bad rashes and itching. Those people did not quit treatment (except for a very few with very, very severe, life threatening rashes and allergic reactions). But the rest of us continued treatment. There are people here with cirrhosis who already have the deck stacked against them. They are getting through treatment with the help and understanding of their doctors. There are people here getting transfusions frequently, taking Procrit or Neupogen a few times a week, taking meds for nausea and the rash and itching, etc. We are toughing it out, but to do that, we need the doctors to understand.
As noted, you may be able to work. Many do. Many work all during treatment. Some do light work. Some do part time work. Some take sick days or vacation as needed. Some take a leave. Some work as long as they can and then take a leave if they just cannot continue. If your side effects are mild, you will probably be able to work (although I don't know about driving a forklift...maybe someone else can comment on that). But you could get severe anemia like some do. Anemia will make you incredibly tired and weak and short of breath, and while anemia is no reason to stop treatment, you may have to stop working.
Personally, I could not have done my job. I am retired, but I was a registered nurse working long hours in a highly physically and mentally demanding job. There is no way I could have done that job on treatment. Howebver, had they given me a desk job which was part time, I probably could have done it.
Can you get a different doctor, a hepatologist, one who is experienced in treating Hep C patients, maybe at a large medical center or university affiliated medical center. That is a potential option.
Keep us posted. I hope this can be worked out for you so that you can treat.
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