To Work or Not to work?

[KAMO]

Hey, I'm new to this site and think it's great to have a place to get opinioins and vent!  I beat cancer 20 years ago and 3 years ago I was diagnosed with Hep C - most likely due to blood transfusions while being treated for the cancer.  I did combo therapy and my counts (red and white) fell so the doc cut the amount of meds.  That treatment didn't work. My new doc thinks cutting the meds was the reason and wants me to do the 48 week treatment again. If my counts fall he will give me something to help.  The problem - I work as an assistant cook in a very busy kitchen.  I was off for the first two months of the first round and nobody I work with knew anything.  That gave me time to become "used" to it.  This time around I will not have the grace period, the meds will not be cut and I could be on new stuff to fight the falling counts.  I'm not sure if I should continue working and wait to see what happens or take a medical leave before I start.  My boss has a medical backround - do I tell what's going on?  I'm confused and afraid of starting the meds again with anxieties - I've been told to see what happens and don't tell my boss anything.  Last time, my counts fell and so did I at home in the shower - what if it happens but at work!!??  Any advice out there??

[Dale_Ray]

EVeryone is different on working. I took a weeks vacation the first week of treatment and that was a good decision. Everyday is different and some are good surprises. If I worked at a physical job I think I would be in trouble. If your feeling ill and worried about the boss then that is a tough spot. You sound like a real fighter from you history and with me time seems to march on by and while I don't really feel better I seem to be getting used to feeling so tired all the time. Good luck to you. Dale

[SnoWav]

48 weeks is a long time to sit around the house and think about how crappy you feel. It is much better to stay busy at work and push yourself thru it. I would not have wanted to stop working even if I was rich and diden't need to.When I was very busy I diden't think about how I felt.I diden't count the days and would surprise myself every now and then thinking I was on week 20 and it was really 24. And what if you do the whole TX and don't clear you don't want to waste any of your life. Bend the TX to your life Don't allow the TX to bend you. I told my boss at work at week 24 because I looked so pale and they were worried about me but I could have made up some other excuse,They were great about it. Good luck on whatever you decide.

[FlGuy]

You'll probably get a lot of input on your situation that you'll need to sort through with your 'new doc' who seems to be on the ball. Folks have varying degrees of side effect (sx) from the meds - Interferon and Ribavirin.  The two you alluded to (low wbc - absolute neutraphils and hemoglobin aka HGB are ones that are frequent.  Both can be 'boosted' by other injectable meds which your doc will monitor by regular bloods tests (CBC's).  For these it's best to plan ahead with a doctor solution in place before they are needed. But there are other side effects, tiredness, fatigue, concentration problems that could also affect your ability to work.  With 48 weeks ahead of you, its a long row to hoe.  You should work closely with your doc who, hopefully, has a lot of experience in treatment (tx) of hepc.
Your question on whether to advise your boss about treatment is a loaded question.  There are a lot of misconceptions that people have about HCV and working in the food industry may create even more for you.  My suggestion is to wait on the boss to determine if it is necessary for him to know.  Before you do ask yourself what you will gain by telling anyone except immediate people who need to know. Many people get through tx without missing much work, others are not able.   Here's a website with more information in lots of categories. http://janis7hepc.com/

[KAMO]

I really appreciate all the opinions.  I'm a fighter and I also have kids to consider.  The first time around I worked during the week and took the shot on the weekend.  So I was out of it for the most part. I lost 48 weeks with my kids.  I think I also have to take into consideration they are going through it again with me.  If I take my meds while they are in school during the week, at least I wouldn't be a zombie on the weekends when they are home.  Lots to consider!  I thank you for the suggestions and the web site to look at.

[NYgirl]

First off, when you were treating did they use the rescue drugs (Epogen and Procrit or Neupogen) to try and help with the white and red problem before they cut your meds? That would be so sensless to do that to you without intervening!

I do work - I've been treating for 20+ weeks now and I am a single mom of two kids.  While I admit I'd MUCh rather be home resting (and that is ALL I do on the weekends and at night after doing the mom thing) I have found it completely possible to work most of the time.

The only time I had trouble was when the anemia smashed in and I was so weak. But the doctor put me on the Epogen and ironed that out.

I can't say I enjoy being here (but then i NEVER do) but I need the money. Also making myself get up every day and keeping the routine helps me to forget I have this....when I'm at work I rarely think about it because I am so busy.  You know how when you are sick you feel so bad UNTIL you get up and take a shower then you feel magically better? It's sort of like that - just maintainning my life and not letting the disease get the best of me...helps my determination and rids me of self pity (somewhat LOL).

Best of luck

[NYgirl]

PS

I did tell my boss about my disease and tx. I swore him to secrecy. Of course he went and told HR all about it...and then a lot of people found out (most I just tell I am on "chemo").

I was glad I had said it because once the anemia kicked in I could not hide the fact that I was sick. The dirtbag actually told me one day I had to "try not to look so tired"...but...because they do know about this they HAVE to cut me some slack when I am not up to par. Between the brain fog and constant itching that I do...LOL they must think something really BAD is wrong with me.

It's a very personal decision. In a lot of ways I wish that I had not but honestly - they would have thought I was completely drugged out or something if I hadn't. Since we have laws to protect us...and things like FLMA...I guess it was a good move.

[KAMO]

They didn't put me on any rescue drugs and that really pisses me off now that I know it was an option.  That's also why I have a "new doc".

I know if I decide to take medical leave for those 48 weeks I will have to stick to some kind of routine so I don't go crazy.  It would too easy to stay in bed and feel sorry for myself which I don't usually do. With young kids it's really hard to do anyway.  I'm usually a very strong person and don't let all the medical stuff I've been through get to me. Always looking at the sunny side if I can find one.  But lately, I feel like it never ends.  I had cancer 20 years ago and every 5 years they tell me about long term side effects of something I was on. Hep C is just the latest on a list.

My concern with work is pretty much the same.  Between the brain fog and the temper alone, if I don't tell my boss what's going on to some extent, they would think I'm totally drugged out or something.  Being I work in a fast paced kitchen,sharp machines, 5 hours on my feet and expected to lift, I really have to see if I can physically do it.  I don't think I really care if anyone knows it's Hep C - my hubby does!!

What if any side effects do you have from the neupogen?

[KAMO]

Thank you for that suggestion.  I will ask about all that when I see the doc next.  I'm always afraid to take more drugs than necessary for fear of what they will do to my liver.  But I guess if it helps..... The first time around I didn't take anything else except tylenol when I needed it.  I handled the depression and anxiety ok for the most part.  Being a mom in the 48 hours after the shot was really hard cause at times I just couldn't do it - I couldn't take care of my kids.  I always thought I could do certain things and wanted people to stop treating like I wasn't capable.  After a short time, I realized I did have limitations which was very hard as an adult who always said you can do it if you put your mind to it.  With this stuff it doesn't always work that way.

As for my boss, I think he would really be supportive with this whole thing cause he has a medical backround and a level head.  I can see both sides of telling or not telling.  I think I would feel more comfortable with having him know just incase I do have to stop working or I'm not up to par on certain days, they see other outward symptoms or I do something stupid due to brain fog or riba rage.

Thank you and good luck to you and all who read these comments!

[SJL]

First of all, their is absolutely nothing to be ashamed of. Your husband needs to do some research on Hep C & realize that it is a dangerous disease which has gone undetected for many years, and their are many people carrying this disease which don't even know it. It is not in any way your fault if you received this through a blood transfusion.

As for your job. Only you can make that decision. You know what your job duties are and it appears to be pretty hectic? Even with all of the aides out there, at times you might not feel  like dealing with it. Personally, I would tell my superiors & let them know what you are going through. Hopefully you can continue & if not, don't forget FMLA.

Good luck & let me know how it is going.

[NYgirl]

One of the biggest reasons people DO quit tx is that they do not have rescue drugs.  Most of us have found that while anemia etc.is horrible - the drugs take care of it and we are able to continue on at full strength on the meds.

Please take Kalio's advice and arrange these with your doctor.  You won't believe the difference that they make.

[lilmoma]

I just started tx, and I am not complaining yet...............
I too work a very physical job, I'm on "stage" all day, I did tell my boss, and I did "swear him to secrecy" (sp?)
Who knows how many he told, but now "they know" and legally they too,..have to deal with it.
I will give it my best, but it is difficult being under the magnifying glass while going through this. boss man came by today and asked "how I was feeling", I can read whatever I want into it, but this is my reality, and I would rather be working than sitting at home imagining every little ache and pain and thinking about if it is tx related.
lilmoma

[can-do-man]

Hello and welcome, glad you found this place. I take it your a geno 1 because of the 48 weeks. But i am curious though have you had a bx. yet? and if so what stage our you. Maybe i missed it but that would be the first think i'd want to know before deciding on tx.

[KAMO]

I am geno 1 and did have a bx 3 years ago before I started my first go round.  I believe I'm in the moderately inflamed range.  The first doc didn't give me "stage #'s" hopefully my new doc will when I see him next week.  I'll add that to the list of questions for him.  I too am glad I found this site...it always helps to talk with people who are in the same situation.  Thanks!!

[can-do-man]

Best of luck to you, and yes do ask him what stage you are. Could make a whole lot of diff. In what you want to do as there is some new drugs in the pipeline that sounds very promising if all works out with them. Again good luck and hope to see you here more.

[strator]

Welcome here, although you are certainly not new to treatment. Your decision about working can be a tough one. I'm a geno 1a just hitting 24/48 this Staurday and still doing electrical and remodeling work 35 days a week. Usually about 6 hrs day.There's one guy I work for sometimes and also my regular boss who is also my uncle, both know just that I'm on liver meds that may wear me out and they just said well if ya can work great, if not no problem, no questions. I  also have taken on some graphics computer work lately too from home.
The electical work though physically exhausting some days, usually is the best part of the day mentally as well as physically. I'm too busy to 'think' too much, work w/a great guy and I think the exercise of it helps a lot too. I've been fortunate not too need the anemia drugs or ADs yet although i do have a script for the itch I use only at night.
Physical work does have it's drawbacks on tx though. First is getting my A in gear to get there. Mornings are pretty rough for me, but once I'm out and about it seems better. There is also a lot of hazards. It's pretty unusual for me to get through a week without going through a box of bandaids at least, between the dryness from the meds causeing chapped and cracked hands too little nicks and scrapes that come with doing construction type stuff. I have to be very vigilant about not only protecting my hands(and head) but also being prepared for treating cuts and the cleanup so I don't get blood on shared tools or areas someone may touch. I wear gloves as much as I can.
Nowadays my muscles (especially neck and shoulders) ache all day long, some days I pop a tylenol 1/2 way through the day. When it comes to lifting I do okay but I'm more prone to ask for help, screw the macho stuff it's safety. There is noticeable diminished strength and endurance.I don't want to throw my back and derail tx. I'm fortunate not to have been hit with a really low blood count though. Best I can advise on work is just see how it goes, the old one day at a time. That's how I've been handling it for 6mos. Maybe if your boss knows he may be more willing and understanding if you need to cut hours sometimes. Again, your the one that knows your boss and the work environment your in. Talk to your doc about it too.
Wish Good thoughts to you,
Don

[Megsy]

Posted by sjl

"First of all, their is absolutely nothing to be ashamed of. Your husband needs to do some research on Hep C & realize that it is a dangerous disease which has gone undetected for many years, and their are many people carrying this disease which don't even know it. It is not in any way your fault if you received this through a blood transfusion."  

I don't think it's anyone's fault how ever they got it, no?

[spiritwalkin]

Hi. Good question. My wife worked at her job up until one week before her trans-plant in 2003. She finally stopped as a result of bleedind from her nose. This was latter determined to be varices, and she had gained almost 50 lbs. from fluid building up in abdomen. She is an unbelievable fighter, just as you appear to be. But my wife was up-front with her employer. She was not in a job where she could get cut or injured as you are. This disease is a blood issue. You must way that in your particular job. We pray about everything and it works for us. Let your heart dictate your actions. You know that gut feeling. Trust in it.

[Algernon]

Strator, I felt inspired reading about what you do everyday.  

It's taken me a while to figure out what most of you know--it's better to get out of the house and keep living your life.  At first, I was so worried about hurting myself that I took it too easy and, eventually, time stood still--not good when you're counting down the weeks.

Now that I'm forcing myself to have a more normal schedule, I'm actually feeling better.  All that said, Kamo, if you can build in some flexibility, it's a good thing.  When I first became anemic, I really couldn't hardly get out of bed for a week.  Monitor your labs closely so that you can hit it any anemia hard and fast.

[KAMO]

I think everyone on this site is strong.  Let's face it, what are the choices.  Be strong or give in?  We do what we have to and one day at a time is the way we've all learned to live with this.  Some days are much harder than others -like yesterday when I found this site:)!

As for hubby, he does need to be educated.  The first time around he was given the ins and outs, but I don't think it sank in and he never really talked about it.  He's scared and we have to talk......

I would be curious to know if anyone has taken/tried any herbal stuff that worked or helped.

Again, thanks for all your stories, ideas and advice.  Best wishes and prayers to all of you.

[skydiver1013]

This is my first post here. I am 50, married for the past 20 years, and we have a 16-year-old daughter that likes to die her hair red & blue. I work full time to support my family; my wife is a full time homemaker, part time art student. For the past two years, I also have been back at the university as a half time student pursuing a second degree. During a routine physical last December, I found that I have HVC. It is genotype 1, and my liver biopsy shows stage 2 fibrosis. I understand my treatment will consist of two drugs; some type of interferon injection one a week for 48 weeks, along with ribavirin, taken in pill form. I have no idea as to what is ahead of me however; I do not plan to stop my life just because I had a bad physical last December. I work for a major corporation and have short & long term disability however, it only pays 3/4 salary. There is no way we can afford a 25% pay cut.

[cuteus]

Welcome to Medhelp! It could be a huge asset while on treatment(tx) to be here.
no need to think of disability just because you are going on tx, you might not need it at all. Genotype one can be conquered and tx is doable, you will not have fun while on these meds, I will be surprise if you do but you can still find humor in some of the weird things that will come your way. I found that coming to work daily, no, pushing and dragging myself to work daily was better in the long run, than staying home dwelling on the aches. Once the Procrit was introduced to treat the anemia that will come with ribavirin I was able to finish the tx successfully. Ask away, someone here will help find the answers.

[strator]

algernon and KAMO... I just wanted to be clear about something. I'm able to work and take care of my duties as a single Dad an caregiver for my father. Not everybody on tx can, and they may very well be far stronger than me. Many are dealing with physical and sometimes emotional sx that I haven't had to face. We each do what we can, as we are able to. There are also people on here that deal with daily injections, multiple times through tx, and other physical ailments that I wouldn't want to deal with even off tx. People like Magnum and Eisbein have been extaordinary inspirations in their battling this disease with all they've gone through.

skydiver1013.. For reference here: tx=treatment. sx= side effects bx=biopsy dx=diagnosis

Welcome. I'm not sure if therer's a question in your post or just a statement that you won't stop your life for tx. I don't think any of us stop our life for tx. We make alterations as life demands so we get through our tx. Remember the goal here is good health.
Sounds like you are planning to tx. I'm also a 1a, grade 2, stage 1 to 2, (53yro now). Also had a high starting viral load of 18.7 million.
I took 2 years to prepare for tx. Part of that in my case was due to wanting to get more sobriety under my belt and work on personal issues like how I react to life. I joined a monthly support group for hep, did research, talked to people I met that had done tx, and saw a therapist.
One of my big concerns was financial. I was(and am) barely getting through from paycheck to paycheck, nevermind if I went on tx and the side effects caused lost work. I'm a jobber so have no FMLA or  disability of any kind, though I am blessed that tx itself is covered. My 14ryo son and I live with my 83yro Dad. Between he and I we like many people, were still struggling from month to month. I tried setting things up so I could afford it easier on tx. Besides my construction I do freelance art work, portaits, and  have worked at major corporations doing PowerPoint graphics, and have an assortment of other trades I have worked in. I went in to tx figuring I wouldn't be working construction much and would have to kick up the artwork. It hasn't worked out that way. The construction is fortunately a flexible schedule so it's a trade off. It's been a tough 6mos financially, also lost a lot of work during Dad's surgery and a number of family funerals. But we DO get by on less than I would have thought we could. Jobs and money have a tendency of showing up just when I need em. Nerve wracking, but I'm hoping to get through this(once) and still have some optimum years in the workforce. Everyone comes to their own decisions on tx, though some with more liver damage may need tx sooner than they'd like. Hang around here and let us know more about you, ask questions. There's some great people here, with wisdom, tips on getting through side effects and most importantly for me...they showed me in the beginning how to be pro active and take part in my  treatment rather than just letting treatment happen to me.

Be Well,
Don

[strator]

One additional comment before I go take the front door handle apart(just found out we're locked IN! Opens from the outside though. Also the dryer broke this morning, that I guess is tomorrows chore.)
Someone suggested to me once that it is better to change our lives to fit our goals, than change our goals to fit our life.
In this case I had to prioritize my goals.
Because I was dealing before treatment with hep related fatigue that was getting in life's way: My #1 goal is to get healthy so I can put the proper focus into my art career and attain my life goals. The changes to my life are part of the journey.
Don

[KAMO]

strator - seems like you really got your stuff together.  I'm happy for you!!  Good luck with the door and the dryer!

When I start treatment again, I don't plan to stop my life, I plan to adjust as I need to. I've learned to adjust pretty well over the last 20 years fighting all the medical conditions and living life in general. If I have to stop working I will.  My health comes first. I'm 38 years old and God willing I will have at least another 40 to go to enjoy my kids and husband.  I don't want to stop working cause I need something to keep me busy.  On the other hand I have to wait to see how things go.  If I physically can't work then I will have to take a leave and find something to fill that time. It's that game of let's wait and see! The only thing that will be new this time around for me is the procrit etc...I've done the 48 week treatment already so I kinda know what to expect with that. But the rescue drugs I'm not familiar with.  This time I also have this site :) I should have some plan by Mon. when I see my doc.  Then I'm gonna do something I've been wanting to do before I get started.  Something fun, different and to relax....

[FlGuy]

In your post about long term disability...you should look at the 75% figure for LTD. I believe that the 75% is tax-free income and that it could end up pretty close to your taxable income net take home.

[GoofyDad]

I think it depends on whether income tax was already taken on the premiums paid for coverage. If the employee paid (after tax) for coverage it becomes an insurance gain rather than income. If it is an employer sponsored benefit - it's income.

[FlGuy]

Got it. I looked into possible ltd way back , just in case. My  premiums are taxed so I was feeling pretty good about having a back-up plan in case I couldn't work.

[skydiver1013]

Glad I found you guys. My first shot will be either this Friday or the next at the latest. I find out Wednesday how my insurance wants to handle my meds. I stopped drinking as soon as I found out I had stage 2 liver damage. I miss drinking beer when I watch sports. But it’s a minor issue in light of what it will take to rid myself of this virus. I wish my body could kill it on its own, but it can’t. So now that I found it, I plan to kill it!  I know that I have no idea what tx will do to my head. I do know what that virus is doing to my liver. Kill it before it kills me. What ever it takes! I wish I knew I had this twenty years ago when I was thirty.

Blue Skies

[FlGuy]

Good luck when you start.  It's a good idea to get the insurance stuff sorted out in advance.  It may take a couple of calls/follow ups by you and your doc to get it all lined up.  Some folks find that the ribavirin is covered under the 'pharmacy' component and the Interferon covered by th 'medical' side of insurance.  Clearing the insurance hurdles is a big step forward. Don't be a stranger, check back in and let folks know how you are doing.