Poll on working through tx

  I was at a toss up on which side to post this, decided here.

  In a post it was quoted as -possibly, not a 'study' - that maybe 95% of people work thru tx. I have 'guesstimated' less in reading here, so curious to have a 'poll' on this. I was out (of the physical part) of work by week 4, and I really intended, expected and tried to work. I was slammed at week 4 and was surprised! My last 2-3 days 'on the job' .... a son went with me and customers ended up helping and making me sit down! I hadn't said a word, looked like I was going to fall on my face (was about to! Stubborn.)
This may be hard to 'poll' as I know many did work, while suffering badly due to couldn't afford not to, loosing job, etc. How about.....

A.) Could not work at all. Adding type of work (physical or desk type jobs.)
B.) Worked, suffered through it.
C.) Worked and was okay.

Also, In my opinion...... the easier we take it on ourselves (if possible) the better our body can fight and heal, so during tx many things just need to be 're-prioritized' to give yourself the best chance.

Just curious as this is some rough meds!                          LL

[NYCMark]

I surprised myself and worked through (suffered through?) my 72 weeks of treatment. My job is not physically demanding, but it does involve long hours. I did have to take just a handful of sick days off.

Mark

[kcrandy]

B.    

had to our possibly lose everything worked so hard to get.

so far i have only misssed two days in 53 weeks.

i feel for you you are right i do see and read that a lot more people do not work thru tx.

what helped me was i informed my employer before i started tx about all the pros and cons of tx and they said for me not to worry they would work with me.

also the va hospital has been there to keep a decent eye on me thru tx, and have given me meds that help with naseau,  headaches and pain med etc...

finally the german blood in me is just to stuborn to let me not work thru tx /: O )

[cbee]

Hi.  Treatment kicked my butt.  Had to lower the doseage during the first month as the side effects were horrendous for me.  Worked on and off during the first 2 months and then didn't work again for 4 months.  I was healthy with little fibrosis when I started.   Some people are more sensitive to meds than others.

-cbee

[mremeet]

I worked through it, but I took substantial amounts of time off (sick leave). Although my situation may not apply to strictly SOC folks because I was also taking telaprevir at the beginning of my tx.

[desrt]

B.

What randy said, only I had BCBS instead of VA and only did 23 weeks.

[Tri-guy]

One of those fortunate enough to work full time during my 24 months of treatment and it was never an issue.

[geterdone]

B.

In wk 38 of 48 / wbc taking a beating but still riding 'em waves to SVR at the end.

jasper

[CockSparrow]

Worked all thru Tx and didnt miss a day except Dr visits.
CS

[shastri20032003]

beginiing of tx worked for 60 hours a week. but around week 12 my hgb went low so reduced working hours to 40-45 hours a week
worked right thru 24 weeks

[zazza]

Work, who are you kidding, I was happy I made it to the bathroom. I am doing better now in the later part of tx, now I am happy if I make it to the grocery store, it lies straight across the street.

[lanier]

I stopped working before I was diagnosed.  had gotten the shingles for the second time had anemia, colitis, and was getting a divorce.  I was diagnosed right as I was trying to get back on the road forward and treatment took me down to a whole different place.  I have not worked since I cannot get 2 hours of anything done on most days and have a whole new batch of issues since trying to treat.
Lanier

[mirceani]

C so far (8 weeks only)

[wyntre9]

A.
I haven't worked (in the financial sense) since started TX 49 weeks ago.  

I have worked my butt off moving so I could afford the time,filling out piles of paperwork to funds that are OWED to me and that I have to PROVE i am entitled to, and renovating and winterizing the cottage I moved into.

I think it depends largely on the type opf job you have.  As a (former) music teacher with 200 kids per day, 600-1200 per week, 6 classes per day, there's no way I could have done it.  Heck, I could barely do it when i was healthy!

I did try to go on a split week schedule; off Mon. and Tues and working Wed. - Friday but the district wouldn't allow it and I went out on early retirement DB.

If I had had to work i would not have started, or, at the very least continued and hopefully finished TX.

wyntre

PS - good poll

[nygirl7]

B.  Worked for all 72 weeks...had no choice really I've worked too hard to get to this level at my company and couldn't take the chance I'd be replaced and out of a job with no insurance.

I did have to take a nap every day at lunch time - and I did miss three days when my hemo plumetted six points in ten days but.........I just didn't have any choice so I came in.

[Teufelhunden]

The 95% was just a swag (scientific wild *** guess) and by no means meant to imply. But I, on the other hand, looking back through the forum, would venture to say more people opted to work than not. But you're right. A poll is a good idea just to see what the percentage would be. Who knows? There may be a study done on it one of these years.
B.
I worked through my 48 weeks. I missed two days because of the flu which, on top of the treatment really put me down hard. The rest of the time was hard as well but was able to drag my butt in to work.

[Stiffneck]

Some days have been better than others,  but after 20 weeks I have not missed any days because of treatment.

[gauf]

B -   24 weeks

[charm27]

Lauri- So glad you started this thread. Im only 1 shot down. However planning to be working in February otherwise I lose everything. Glad to hear there is hope of me getting back to work.

[wyntre9]

Boy, do i feel like a wimp!

wyn

[kittychaos]

I stopped working 2 weeks prior to my treatment..I worked in sales....fortunately for me my fiance is very supportive and is a skilled trade worker, so there for is able to support the both of us..I am only in the first week but it really kicked my but the first injection..I have a rare blood disorder though that lowers my hemoglobin levels already

[pigeonca]

I couldn't have worked if you paid me - well, actually when I work they do pay me.  But the inability to stand without holding onto the wall pretty much precluded gainful employment.  During tx, my major task was a daily walk around my block and the next one - about 1/2 mile.  

After tx I was unemployable for quite some time as well.  I do desk work, but the hours are long - 10 hours a day or more, and I didn't feel ready for that, especially with another hour or so of driving to and from the job if I couldn't work at home as I sometimes do.  I just began putting word out that I was looking for work and Boom! The writers' went on strike.  I'm a film editor, and if there aren't any scripts, there aren't any films,  There are editors who are far more successful than I who are also looking for gigs, so the competition is fierce.  Anybody know of a reality show that needs editors?  They don't have scripts, or at least nothing that requires a guild writer.

[moahunter]

B. I have taken quite a few days off (like today). At 40 weeks, feel exhausted. Haven't worked very well over last year, has slowed down promotion for me, but so be it. Better to try and beat this and get my health back.

[R Glass]

  I noticed most post did not specify "desk job" or "physical." I am curios  because I work construction and hopefully will be starting tx soon. I am still fighting "The Man" over ridiculously high Co-Pay.

[dmhrdh]

I have worked full time throughout my treatment for the last 7 mos.
I won't say it's been easy though.  I have missed 2 1/2 days. But, I have also been severely anemic without access to rescue drugs (Prove 3).
I worked FT the last time I treated also.  I really have no other option.
I do think that in the long run it has helped me mentally and physically....but  again, it hasn't been easy...

[Lady Lauri]

  Thanks and get this....... In a rush as it just hit me...tho I am not doing the physical job, I just added up that I have 'worked' paperwork and delivery of estimates 4 out of the past 5 days! The paperwork a few hours a day, so I guess I am working 'part time', tho I guess it's only because I can 90%of the time do it when I feel like it. Was about 3 weeks of NOTHING tho.

  Wyntre....me too :{ ....feel like a wimp ! No way I could do a HAVE to be there job.

  Back later but as RGlass said, please post that physical or 'desk' type job.

Tuef....... couldn't remember who ! I knew you'd said as a guess, thats what got me thinking :}

                                                                 LL

[wyntre9]

I believe i could have functioned on a part-time level, 2 or 3 days per week, during TX, but that would have jeopardized seniority, tenure, pension, etc. etc.  Besides, the district found it easier (and cheaper) to hire a sub.

Not that I'm exactly sad about that part of TX - i was ready to get out of that job after 20 years . . .

Hopefully, when i finish treatment, in May, I'll find something else to do at least part time.

If I had had to teach through TX I simply would not have started the meds.  

But I still feel wimpy compared to all the other strong determined folk here.

wyn

[desrt]

wyntre9:

You are not wimpy. There is an incredibe range of reactions to tx. One person's CBC may barely budge out of normal range and they SVR, another may suffer, and fight, and struggle to no avail. There is no 'justice' to this disease or its treatment.


R Glass:

I worked as a plumber, pipefitter, utilities worker during tx. I've also been around  a few other people in the trades (auto mechanic, carpenter, utilities contractor) while they were txing. A couple observations:
I've seen bosses, coworkers, and business partners be  extremely supportive and go out of their way to help pick up the slack. I'm not saying this will be your experience, but it was mine.
I've also seen the people treating be pigheaded, stoic, and push on through when they should have asked for help. (Not me - I'm a big ol' whiner.)
Good luck with yours.

[wyntre9]

Thanks, desrt.  

wyn

[PokerRon]

i was on Failed TX for 31 weeks
i worked the entire time, five days a week
...........being a boss ...........
i was tired,cranky, irritable, confused, and paranoid
making decisions and dealing with the stress was horrible

..........im off TX, feel great and life is good again,

my job was both physical and desk

i will have treat again in a year or so
im hoping i wont have to work during the next round

ron

[indyjo]

I am doing 72 weeks this time around and am about half way through. I am currently working and worked all through the first 48 week treatment. I am struggling and have difficulty with fatigue, nausea, irritability, and concentration.  My doctor stated that he would support my going on disability and that is comforting. Lucky for me that I have a "desk" job. I couldn't do physical work.

[FloridaMouse]

I worked the entire 48 weeks of tx at my desk job as a paralegal.  It was VERY hard.  I didn't start missing work until the last 2 months when  I started experiencing severe synovitis.  I wound up quitting 4 days after my last shot due to discrimination (I had been there 9 years ... pretty sad, eh?).  2 weeks after I quit working I was diagnosed with Rheumatoid Arthritis (that's what was causing the synovitis) and I have not and will not be able to return to work.  

I'm getting ready to start round 2 (pegasys & co-peg for 72 weeks) on Sunday.  I'm very glad that I'm not going to have to try to work through this hell again.

Mouse

[wyntre9]

I wish youo hadn't quit.  Maybe you could hgave taken FLMA to gather your thoughts.  That really stinks.

I don't understand about why you quit.  Was the company discriminating against you?  For what?

SO sorry about the RA DX and a muted congrats on starting TX again.  I'm on 72 weeks as well, 50 down, 22 weeks to go.

Best of luck, Mouse.

wyntre

[FloridaMouse]

Hey wyntre,

Basically I was being verbally abused by a co-worker who had only been employed by the firm for 9 months.  It ranged from comments about not touching the stair rail, to calling me names like "the thing" and general lack of cooperation on the job.  It was indeed over  my Hep C.  I worked for a very small law firm that was supposedly "family" that's why they knew I had Hep.  I went to the attorney I worked for 3 times and he refused to get rid of the offending co-worker so I finally left.

My firm was not governed by FMLA, EEOC or Americans With Disability Act as they had fewer than 15 employees.  So basically, I had no recourse and they didn't have to stop the abuse.

Best of luck to you on your 72 week sentence

Mouse

[gazebo1]

B.....then A.  Could be another poll choice.  Tried, suffered, than had to stop working.

Tried, tried again, but just too weak and not able to contribute fairly to my employer.  Actually could not try less work at my job, so really was a question of fairness.  Also not an option to be paid less for less quality work, so all things combined, had to stop.  Suspect others had same history. Judy

[JRenquist]

B.... then A for me , too.  Made  it through the 1st half of 48, then had to take a leave.  Work with children and am walking around all day, up and down stairs.  Someone told me that they hadn't missed a day of work - but they weren't able to walk up a flight of stairs by the end of tx.  

FloridaMouse that's just awful!

[CMcH]

Again I would love to hear from people doing a very physical job involving lifting. I will start TX in Jan after the holidays and I work in a hospital as a Physical therapist in the Brain Injury unit. It involves a lot of lifting and being mentally alert as some pts. are confused and combative. I plan on telling my boss and perhaps 2 of my closest co-workers about it but I don't want it spread all over the hospital if that is possible. I wanted to avoid telling everyone but my MD say's my boss should know when I start TX and they can't fire me. It's a county hospital with a strong union so I'm not worried about that I just don't like the stigma with it. I have the possibility to drop to 20 hours a week but then i pay more for my medical. At first I am going to try to keep my regular schedule and keep up with my dance & Pilates. Then I'll have to see where the chips fall and start eliminating some things.
So I'd love to hear from people who have keep active physical jobs or maintained any ex. program.

[ladybug52]

I love that you started this poll!
I was a b, worked suffered through it.
I work in long term care, and have to do a lot of lifting also. The worst part for me wasn't the lifting, it was the bending over to move a foot rest, or find a shoe and then straightening back up. The room would spin and I would have to stop until it slowed down. Also felt a slight rise in nausea when the normal stuff, like toilet training came into the picture.
I was always hot, drank lots of watered down juice to counter the nauseau and did what I could to get through it.
I did have flexible work hours, and called in a few times, but I had the short 16 week tx.
My decision to stop early, was definitely influenced by the sides. I wasn't as sick as some, I did get anemic early on, but that resloved itself after only a few procrit injections.
Good luck Laurie/CMch
Hugs,
Bug

[merryBe]

it's good to work a little if its low stress. depends entirely on what's involved.
typing from home, a few phone calls. this can take you mind off the rest, but 1 st month is hell for most, so 10-20 hrs max. then return fulltime in a month if you can...or say agree to a 30-35 wk from home, that way, you can just do 5 hours a day, not get too burnt, and not loose your benefits....but not long long hours you can't expect that work well...that much pushing can really adversely effect your treatment outcome as too much stress quakes an already shakey (shaky) cradle to it's breaking point.
you owe yourself some rest and time off to fight this disease, especially in later stages and/or with exaustion.
hope that helps.

[Lady Lauri]

I do plan to keep track of this poll, tho may have to print/save as per keeping track with this brain right now :}

CMch..... part of why I started this was I had to quit the physical, just no way. Tho that job also needed concentration, math, etc. (and that was also hard) it was the physical that made me drop in my 4th week of tx. And I was 'determined' to do part time! I hope you can continue but I think it's wise to prepare yourself if not, and hope for the best.

LadyBug......seriously considering the 16 weeks, shooting for 18-20 but as we had that option, it's getting to be a lot more thought. especially with the no rescue drugs.

Merrybe.......I agree the 1st mth. is hell and had no idea! Not that it's 'okay' now, but in the start I think it just slams your body. Being able to 'piddle work' at home is good, at least feel a bit productive and I keep learning that pushing it puts me down for days (or rather, NEED to get that THRU my head!)
I agree that it's major to take time off, rest, take it easy during tx. It's my advice to all starting tx IF POSSIBLE and I did set myself up with 'it's all about me right now' (sticking with it is hard:} Just makes sense that your so drained, sick and doing normal routine is harmful to your strength, health and stress levels. I compare that I have gone from a hyper, yipping Chihuahua to a sleeping, lazy hound dog! I am staying on the porch!

  I should add a D.) tried to work but Riba rage got me fired, LOL.

[Teufelhunden]

Wow!  Good response so far!  You keeping track so far lady lauri? My job is extremely physical which requires heavy lifting of armored parts, climbing in and out, on top, underneath of military vehicles and equipment. About half the time it's outdoors. I have a crew of 13 which means every once in a while I get to sit down and do paperwork (actually rest. Hard to keep up with the younger ones).

[Lady Lauri]

  Thanks all , keep posting. This gives a lot of insight for those starting and ,like me, in the 1st several weeks what to expect, plan for.

                                                                                              LL

[sunspot]

I missed 33 days in the first 9 months of tx that I used FMLA on. After that I went on Short Term Disability for the next 5 months. I could not take working any longer.
I have a desk job. Tx really beat me up.

[pigeonca]

Question:  Is age a factor?  Do younger folks have an easier time?

[Cindy10]

I did not have to work but I think I could have. I stayed busy all the time did some serious garden
projects, remodeling in the house etc. Hubby still on tx and still working roofing. He is the boss so he doesn't have to do the labor but he does. He says the young kids don't know how to work. He says the "hard work makes you strong like bull"  he he he. Which might explain why he is a roofer
;-)  We have just found that if you stay busy and active you might still feel like **** but sometimes you forget you feel like **** cause your so busy ;-)

Just take it as it comes, everyone is different!!!!!

[kcrandy]

i am a driver for a union plumbing company and i deliver all the equipment these plumbers need aka/some heavy lifting required etc.  and believe me there are some days i would dearly love being home and not at work.
i was told by a lot of people b4 tx that working can help keep my mind off of tx, side effects,etc.  that is still is up for debate as you can see by this poll.

happy holidays ALL.  : O )

[sillymanxyz]

I worked for the first 6 months of treatment as an IT manager and I was able to sit at my desk a lot...I finally told them I was on the interferon and ribovirin about 3 months into it.  I got laid off on December 29th of last year (about the 6th month).  My doctor put me on disability through July, when my 48 weeks were up. I still haven't found another job, which is why I'm also looking at doing either the 72 weeks or the consensus interferon regimen now, since I don't have to report to work every day ( I relapsed - my VL is 1.4M again...).  I really ran in spurts.  I could work at something, even lifting and moving stuff, but I could only do it for short periods, then I'd have to rest for a while.  I still suffer from some of the symptoms occassionaly like irritability and fatigue but my energy level is mostly all back now.  Except for the beginning of last year, when I lost my job and my father-in-law got sick and died, I did pretty well emotionally and spiritually.  I DID learn a lot about how to deal with emotions that are all jammed up under my chin and wanting to leap out at everyone else....I really practiced keeping my mouth shut.... My mantra was,  "DON"T SAY IT, DON"T SAY IT, DON"T SAY IT"...it works well
Mike.

[berts wife]

Bert has not been able to work.  He is an over the road driver.  No way to drive for long periods of time with all the meds.  Not safe for him or anyone else on the road.
This is week 7 for him and i can see he has gotten more and more of the side effects as the weeks go on.  

[toughluck]

I have no choice, no work, no health insurance, no money it is going to rough.

[pigeonca]

I think a lot of it depends on the kind of job you have.  If you work for a large corporation or the government, and have been there for a while, they usually will let a good employee slide, doing less than stellar work and having a portion of their tasks handed to other employees for the duration.

OTOH, if you're self-employed, an independent contractor or owner of your own business, where you have to give 100% a 100% of the time, then I'd think it would be extremely difficult to keep on working.  Also, I just can't imagine doing physical labor during tx, but apparently some people are amazingly tough.  I'm not.

[toughluck]

I am a self employed auto repair tech, those tires are going to feel real heavy. TX and sitting home is worse, I will have to grin and bite it.

[toughluck]

Only good thing is I can come and go as I please will make those doctor visits easy, as long as I can make a weeks pay and not go broke.

[robeire]

I did six month treatment for geno 3a ,neg pcr  from wk 8   virus back 1 month after finishing -yuk- that was 3 yrs ago- never been the same since - shortness of breath-chronic blepharitis- depression etc
I didnt work ,I am on long term disability here in ireland- i was really very asymptomatic before treatment- driving was dangerous- nearly killed myself several times having to drive a 5 hour roundtrip each week to the hospital-Got arrested for losing the head with some people who were cutting down trees near my property!
I was 46 when i did the treatment
could age/being asymptomatic before treatment be major factors to look at re working?
wish you all well /Gods Light upon all  Rob in Eire

[wyntre9]

I know what you mean about the driving problems.  I have a 5 hour RT to see my gastro, too, and the longer I'm on TX the harder it is to feel safe behind the wheel of a car.  I get dizzy, lose concentration, not good in tri-state traffic.

wyntre.

[Lady Lauri]

  Hi all. Re-started poll (sorry for all that already took the time to answer.)
Gives 5 choices. Will run awhile than talley up.

Wyntre, robeire, have to agree on the driving. I limit my driving, ( a vehicle, my motorcycle has been totally parked since week 2 :{ , as just too sick/scattered some days. My truck now has a brand new big dent in the bumper from one of those days! And I really should have seen that BIG tree! :}
  I could not drive 5 hours at all most days, so feel bad for those having to do that. Could not imagine trying to drive 'over the road'!

While I agree keeping busy during tx is good, I do that at home and am really glad I am able to stay home thru tx. I 'putt' around on days I can, do 'desk work' on good days and am able to stay in bed all day too. It is a luxury in this tx to not HAVE to be anywhere. And God Bless this lap top as saves my sanity on those in bed days!

Anyway, sorry to restart and I can talley from here too so ya' don't all have to re-post.

                                                                                        LL

  

[SJL]

As we all know treatment affects every one differently.I attempted to work through my first round of therapy, but ended up going on long term disability. I have done a total of 102 wks., trying all 3 interferons/riba. I even tried maintainence. My job was both physical and office work. Another thing I would like to see is a thread or add-on to this~~~~~~~~How many people have contracted other attaching diseases? The Doctors will not admit to the fact that Interferon usage for Hep C can cause additional problems. As a healthy person prior to therapy, I now have croglobulemia and Neuropathy.Their is not a doubt in my mind that this are directly related to therapy. I just did 4 wks. of Rituxin therapy and my enzyme numbers dropped by about 30 points. As for age I am 64, female, biopsied as carrying Hep C for at least 30 yrs.~~~~~~~~~~Great post Lauri.

[alagirl]

I'm with you, had the entire pre-existing blood condition that made HCV tx more difficult.  I'm finding though that if and when I can keep my hgb up and if and when I can largely stay out of pain, its much easier for me to focus on the work I need to do.

And boy do I need to do it.  I'm the money tree in this house, and if I don't work I can lose my sales accounts seemingly at the drop of a hat!  LOL

Actually, I have to admit that as long as I bring them in business, the plants, especially one in particular here, have been just tremendous in supporting me through my "chemo for my liver" as they think of it - that's about as much info as I've given them about my diagnosis.  I'm on their cobra bcbs at the moment, and they plan to put me on their insurance when that finishes, and they are letting me do jobs for them, much of which I do over the phone.  They understand that the mornings are the times I am most sick to my stomach so they schedule meetings with me in the afternoons.

[Lady Lauri]

Popping these to the top to tally up soon. Do any new post on 're-start' please.

                                                                  LL

[sallyo]

D. went part time. Bad but doable

[FullOfHope77]

B

Until the last 2 weeks and at week 27 now. I'm taking a sabbatical until beginning of year and will see then how I feel. Until the last few weeks I hung in there but now I feel a bit defeated by the Telaprevir (that I've stopped taking finally). I think I will start to feel better and regain needed strength.

[susan400]

As you can see, everyone responds differently and at different points in time-depending on which drugs they're treating with, length of time treating, years of treatments, their own particular bodies in response to the sides, and on and on.  There's no real 'set in stone for each person' that really applies-that I know of.  I went back to work, early, after my hysterectomy because I did so well - but I was 30 at the time.  As of my TX #4 - it started getting harder and harder for me to handle working on TX.  Now, I'm up to doing this 9 times and the lingering TX/post TX effects on my body has effected me in too many ways to explain.  I hope to hear from you again soon.     Susan400

[ADESI]

wow just did pegasys about 5 hours ago,so a little foggy - but this forum I have just found recently is very helpful and therapeutic.
I have been on TX for a month and have been working mon-fri (couldn't do it on weekends after inj.)
No way I could do anything physical, but I run a crew of my employees and everybody is very understanding. I commute 1.5 hrs. each way , but had to rent an apt. near job.Had to quit coffee , which was my fuel for the past twenty years. Was kind of hoping this will improve w/ time.
ADESI

[Lady Lauri]

-----------As you can see, everyone responds differently and at different points in time-depending on which drugs they're treating with, length of time treating, years of treatments, their own particular bodies in response to the sides, and on and on---------------------

  I know, such a variance in it all that a true 'poll' couldn't happen! I am sure there is many that would not work thru some of it if possible, but just have to. I couldn't imagine doing the physical parts of my jobs and the mental I try to still do is taking twice the time!!

Going to e-mail you later, kids just got here to help with yard work. Have a few questions about your tx, Dr. and so on.

                                                                                              LL