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hcv/employment/treatment

Hello to everyone. This is my first post to this forum.
A little about myself, I'm a 43 yr old male w/hcv geno 1b diagnosed in 1990. I have consistantly elevated alt levels, last test in june showed viral count of 5 million copies. I've had three biopsies '97, '2001, '2004. last one showed fibrosis, doc said a 2/2 score. Up until now I've been told I did not have to treat, As first two biops showed only inflammation but now with a signifigant change w/fibrosis I'm told I need to treat. For the past 7.25 yrs I've worked for an Illinois municipality as a mechanic. Its a physically hard job w/snowplow duties at all hours of night/day. I'm concerned about disclosure to my employer (the village I work for) in regards to treatment and the possible need to take time off if sides are bad. Also I don't know who would find out like coworkers as this disease is feared so much. It's a small place (150 employees) so if I started looking sickly the rumors would fly. Would they/could they fire me? do I need a lawyer? I know Ill is an "at will state" but I have a great work history with them and it would be a comfort knowing they know and supported me. My other objectives are to get on anti-depressant med and decide between the two peg drugs (dr offerd peg intron) but I like what I here about pegasys. If anyone can help with these employment issues I would be greatful. It's a shame we can't just come out and let everyone know we're sick, like people with say cancer can. The employment/insurance issue makes treating this disease a challenge. Thanks for taking time to read this.

wrench
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Avatar universal
First off, I am sad to hear that someone in the medical community advised you to wait for treatment.  !a is the hardiest, most aggressive genotype to treat and the faster you get at it the better the chances to clear it.

So my feeling is that you should talk to a specialist and get on the pegasys/ribiviron treatment asap.

Now, to address why you think you might look sickly???  I run a support group that consists of 43 infected individuals, some are coinfected with HIV and most are right in the middle of tx.  The nastiest side effect anyone has reported was weakness and the inability to sleep.  I myself suffer from some nausea if I eat fatty foods, like yellow cheese, and so have switched to soy products.

Noone at work need to know your status unless you chose to disclose, also, it is illegal for you to lose your job because you are going through treatment.

Please explain why you think you might be ill or look sickly.
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Avatar universal
I've heard of hair and weight loss etc..
I don't know why they never checked my geno type till this yr.
I am a 1b. I hope I can still beat this!

Wrench
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Avatar universal
just to add to my previous comment:   one client of mine did feel a bit fluish after his first three doses.  We all take our shot on our "weekend", so on friday night, before I go to bed, i do my shot.  Pegasys has the least side effects, if any.  Drink ALOT of water, get off any caffeine you might be using, including chocolate, and use excersice, even walking to help counter side effects such as depression.  I have tons of brochures to help educate people on HCV.  I am an outreach worker, and this is what I do for a living.  I can mail some to you, or you can go to any of the web sites I have posted in this forum and get more info.  Look at this as an opportunity to educate people and get yourself well.  I personally have not missed one day of work since starting tx in April.  I began with 450,00o rna quant load and am now undetectible.  I live in a rather tiny, ed necked town.  I have hit the streets and made it my mission to educate everyone, I place brochures in coffee houses, bars, jewelry stores, grocery stores, public bathrooms...I even stand outside movie theaters and concerts and hand out info.  Once again:  IT IS ILLEGAL TO FIRE YOU BECAUSE YOU HACE HCV.  And you are under no obligation to disclose to your employer.  It is up to you who you tell.
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Avatar universal
You have some very good questions and I don't know so much if you will look ill in face but my husband has lost 20lbs first 6 months of tx so naturally people ask why he is losing.  I personally think if I was you,,,I would try not to tell your work and see how it goes on tx,,,You may not have bad enough days to call in sick but will have days at work that you will feel under the weather.  If you start getting too sick and have to miss alot of work,,,then you could discuss this with your boss.  That should be confidential!  Good Luck!
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Avatar universal
1a is the toughest.  It's also the most common.  I know individuals who have taken the 48 week course and beaten it.  Keep a positive attitude.  You can do this!
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Avatar universal
I wouldn't tell my employer my situation. I told them about the middle of the treatment and after 6 month after finishing tx I still strugglr to keep my job.
It is your choice though...
I had my PCR yesterday (6 month after tx) and is negative!!!!!!!
Good luck to everybody to SVR.
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Avatar universal
Noone in my group(43individuals) have suffered anything drastic, all have worked through it by their 3rd treatment.  Weight loss is very common, but ya know, you can just say you are eating healthier now!  Everyone is so concerned with lower carbs, yadda, yadda yadda.  Don't stress, it's not good for the liver, take milk thistle, which supports liver function and will help you process out toxins, I take 300 mg. a day.  Again, drink at least 64 ozs. of water a day.  I don't know why this works, but it does.  If you get ill, then you can think about SDI.  You've already paid into the account, it's temporary Social Security Disability and pays roughly 55% of your salary for everyday you cannot work.  You can collect partial disability and still work as much as you can or want.  You can tell your boss you are undergoing chemo (that's not a lie) without disclosing your diagnosis, if you need to. You can clear the hepc, work and go on to live a good life...I'm just sorry you didn't start sooner, and all this would have been behind you now.  DON"T WORRY!
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Avatar universal
Congratulations!!  I'm so happy for you! And if I remember right,,,you were a genotype 1 also..
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Avatar universal
my hopes for you are that you have an easy of time on tx. as the people in hippiemoms group seem to have had, however using myself and others on this forum for the last year+ , not all are so lucky. I would not have been able to work from 10 weeks into tx. on. Luckily I only had to do 24 weeks. You will do at least 48. Many are able to work all the way through tx. Some just have to take a few days sick leave. Some can't work at all. The odds are in your favor, though, so I wouldn't talk to your employer unless it becomes necessary. Good luck, and as someone else said, get a Dr. who will tx. with Pegasys, if that is what you wish. There are things you also need to find out. Will your Dr. intervene w/ Nuepogen and/or Procrit for drops in blood count, rather than lowering dosage or stopping tx. Also will he give Vioxx if your platelete count gets too low.

Dheana FANTASTIC news!!!!!!
           Joni
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Avatar universal
WAY TO GO GIRL!!!!! Have been wondering how it has been going for you.
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Will weight loss be significan? I'm 5'7" and weight 125 lbs now. I dont want to loose too much weight.
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Avatar universal
Just from reading posts,,,overall it seems to me that men tend to lose more then women.  I am on my 6 month of tx and lost about 8 to 10 lbs but the advantage is I can eat anything and all I want LOL  However,,,like I said My hubby is same point in tx and lost 20lbs,,,he started at 185 and down to 165 now but everyone is so different that you may not lose that much.  My dr explained that this medicine tends to make you lose even though you are eating.
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Avatar universal
I whole heartedly agree with everything Chev said. It is so important to prepare by educating yourself prior to tx. Do not put ALL your trust in the doctor. EDUCATE YOURSELF!
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Avatar universal
Your questions and concerns are very valid ones... I can only tell you that I am also genotype 1b.... in treatment 7 months..(pegasys)...and today am undetectable...I am hoping that tomorrow will be the same...for myself and for all of us...

I personally would refrain from sharing my condition with employers, co-workers , neighbors and even some family member's...   I have little tolerance for ignorance...especially during treatment...
I have mentioned to some co-workers who I work closely with that I am under treatment for something personal, which I do not care to discuss, and if I ever seem impatient, agressive, or difficult to work with, to please forgive me in advance, it is really nothing personal, and one day I will be back to my old self...they in turn have been very understanding and patient...but I question if the reaction would be the same if they knew the truth.... I dont think so...and I am not willing to put all my cards on the table and take those risk...

As far as side effects are concerned...some person's have little or none...and unfortunately some have a difficult time...try not to anticipate how you are going to feel...you really won't know until you begin treatment...but do drink plenty of water...I am a huge promoter of water... it really helps... also remember that you are not by yourself...we are all by your side...we just cant reach out and touch you...but we are here...

Whatever your decision... I send you a heartfelt hug...my sincerest best wishes on your final decision... and I pray that you make the right one.... God Bless...Edgar



dheana.....congratulations to you...may continued recovery be yours.... Edgar
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Avatar universal
Hi All,

Im sorry to barge this post but its full. Pls continue with your comments to Wrench.

I dont know if u all remember me, I just posted not too long ago
about being extemely fatiqued and was needing help.
I went to the doctor today about it and he has told me that the only thing
to do with being so tired is tx. My load came back in the millions this time and I am 1a. I have decided to start tx with help from some friends. However my insurance runs out first of August, I have applied for A Ben Taub Gold Card which is a Local Hospital that see people with no insurance, I will need to see if they offer Tx, Im not sure if they do, so my question is, how can I pay or get assistance with tx and could I apply for Disability now?

Thanks!!!
meshell
aka - starfish
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Avatar universal
Hi and welcome!!!! You've found the best place to come w/ your questions and problems. I "DITTO" Chevy's feelings. I however had some rough times on tx and had to go on disability. You employer is going to see your insurance reports and know you are treating...because of meds. Like hippiemom said, I told EVERYONE!!! I too wanted to educate as many as possible. In fact my office manager asked me a lot of questions, because her Mom was feeling really bad. Well she told her Mom to be checked for HCV and she found out she has it. I was with my co. for 5.5 yrs and they all are very concerned about me. Even though I had to go on disability...and BTW I relapsed and will start a clinical trial in Oct.....my co. has told me more than once, they will hire me back when I am well! They know I was a great worker and they miss me. They have 3 people doing the job I did by myself, and that's the truth! I wouldn't worry about anybody knowing....I couldn't hide mine @ work...on Monday's I was still pretty sick and spent a lot of time in the bathrm...sick on my stomach. I didn't loose any weight. My hair didn't "fall" out...I lost a little. But it's your choice to tell or not. AND ALWAYS REMEMBER..EVERYODY IS DIFFERENT ON TX. There are a lot of ppl here that haven't "skipped" a beat! I want to wish you the best! You will be in my prayers. Stay with us and keep asking questions...it helps everybody! Sincerely, Cindee
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Avatar universal
Hey girl, So good to see your post!!!!! I've missed you! I want to give you a great big>>>>>>>>CONGRATULATIONS!!!!!!!!!! YOU GO GIRL!!!!!!! I am sooooooo happy for you. I want to wish you the best and a very healthy life for the rest of your life!!!!!! God has "smiled down on you"!!!!!!! Much love, Cindee
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Avatar universal
Hi wrench,
I just went through the same situation with the difference that I work for a large municipality. I totally agree with rev, apply for FMLA (Family Medical Leave). You get up to 12 weeks off, if needed and it can't be held against you or in your preformance reviews. The time off can be taken in increments as needed.

Now I didn't tell my director what I had, I just said that I had to undergo treatment for a medical condition and that I may have to use FMLA on a as needed basis. That's it, no more was necessary. I did send him a memo to inform him but it just stated I was applying for FMLA due to treatment. I think there is a requirment if you take the 12 weeks off in one chunk you're supposed to give 30 days written notice. You may want to check with your HR person. Also remind him/her this is a HIPPA issue to be kept confidential.

There is a form that your doctor will need to fill out and it will not list the disease, just a number of the condition. You don't have to tell anyone, remember HIPPA prevents employers and peers from discussing any medical stuff you're going thru.

Wishing you all the best.
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Avatar universal
So happy to hear your news. You had a hard time, but it seems it was worth it! I can't tell you how happy your news makes me. Congratulations.
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Thanks you guys. I want to start tx asap. I know I've had hcv for 20 plus yrs. With FMLA do you have to disclose? I guess some of my guilt or anxiety comes from the fact that I work on Police and Fire vehicles and fear if they found out I would be fired. As I said I've been there almost eight yrs and did  disclose at my pre employment physical (I wrote non a, non b hep 1990, no problems).
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Hi Gulfcoast,

I have a few Q's, does your director know now that you have hcv? and when you were hired did you disclose at a pre-employment physical?
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Go to janis7hepc.com. That site has all the info you need to apply for disability and phone no.s for assistance programs from the drug companies that make tx. meds. Also, see if you can keep your  insurance by paying for it yourself. I think they have to give you that option.    Joni
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Avatar universal
while on treatment you are protected under the Americans With Disabilities Act. (ADA) fill out the Family Medical Leave Act form. tell your supervisor. he is required to keep it confidential.you may be suprised at the support you get. i told everyone at my municipality.it might help you along to get some encouragement from co - workers. they may want details about needles and giving yourself shots. curiousity.  keeping secrets weighs heavy and you don't need added stress. anyone who says anything stupid isn't worth beans.
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Avatar universal
hi wrench,
no, my director doesn't know I have HepC. I agree with a lot of folks that it's a very personal decision who to inform. I just stated to him that I had to follow a treatment regimen, it would last 6 months and there may be some side effects and some possible impact on my job attendance/performance. Now we do have a very good working relationship and that helps.

I did not state my dx on my pre-employment physical which is interesting as it didn't show up then (14 years ago). I had assumed I contracted HepC during my military service 25 years ago. I had a blood transfusion back then and numerous shots w/airguns in the "cattle chutes". I didn't even think about my pre-employment physical till you mentioned it. Also I just found out this year.

I think if you disclosed during yours you should be ok. I have no ideal why working on Police and Fire vehicles with this would lead to firing. I realize that on your treatment you may not be able to worj as physically as before but I feel that some kind of accomodation for your condition will need to be made per the ADA.

My wife handles alot of HR stuff for her agency (yeah, we're both gov. workers) and I'll ask her some specifics on HR protection and how ADA may apply in your case. I'll try to respond tomorrow as I tend to get sleepy earlier than I used to now that I'm on treatment and I'm fading fast, lol.

I'm sure others here have lots of input from their experience also.

Wishing you all the best and beating this thing.


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