Caryn wrote:

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Sed3, I've thought about that! I don't know what else to say. I have thought about telling him what I have said, then letting him know it is NOT HIV. People are smart and you just need a few words to type in to google and they can figure it out.  I just really am having a hard time with this. I am not sure the truth is a good plan.

Don't say anything in terms of your condition. Just state you have a condition that require treatment which you do not wish to disclose the actual condition. Inform them that it may have adverse effects to treatment and would just like to inform them. Then you can ask them how to proceed. That's what I did

Sed3: Actually, your post below about what you say when people ask is pretty crafty.  I may have to use that!

Sed3, I've thought about that! I don't know what else to say. I have thought about telling him what I have said, then letting him know it is NOT HIV. People are smart and you just need a few words to type in to google and they can figure it out.  I just really am having a hard time with this. I am not sure the truth is a good plan.

Thanks for the responses. This has been crazy as far as emotions.  I am just trying to figure it all out. I would love to have as much information as possible before I start treatment.  I have decided what I will probably do is contact HR and then let my manager know that I have a blood disease that requires chemo like therapy and ask him to respect my privacy. He can let the rest of the team know that I am out on leave and will be back.  This is a compilation of all of the answers to my posts, so thanks everyone!

I also must apologize as I have obvioulsy taken over someones original post. I do apologize. 

keep in mind that you only have to tell HR the actual reason that you are having problems.  Check into if your company has disability insurance you may be eligable for and if not your state should have it...taken out of your paycheck.  The doctor needs to fill out a form and you will be good to go, even if you go down to part time the disability insurance will make up for some lost wages because of dropping your hours.  Good luck! :)

Caryn:  Keep in mind that my side effects were on the severe side, and while it seems that most people will experience some side effects, most people's bodies will be somewhat more receptive to the drugs than mine was.  So, while mine is not a worst case scenario (a worst case scenario being heart attack or death) it is likely worse than yours will be.  This is not a complete description but I will try to hit the most significant side effects.

Within a day or two after beginning tx I got a rash over 90% of my body (everthing except part of my face) that resembled a sunburn on top of measles.  The rash was accompanied by itching, blisters on my fingers and palms, and some difficulty swallowing.   During the first week I experienced intense leg pain and cognitive impairment which included disorientation and difficulty speaking.  I actually sounded drunk when I spoke.  The nausea started immediately and lasted throughout tx.  The rash/itching subsided enough within a couple of days to persuade my doctor that I could continue tx (with the help of many hours of aveeno baths, oatmeal and topical benadryl applications and oral claritin).  The leg pain subsided but I felt far from normal physically or mentally. 

Over the next couple of weeks it was rough but my body appeared to be adjusting and it all seemed doable.  I vomitted a couple of times, had diarrhea, butt burning, fatigue, and the usual, but I did not feel I was in any danger. 

Next, I had some vision problems but those too subsided.  My blood problems had surfaced within a couple of weeks but it wasn't until about week 5 that doc reduced my interferon.  By blood problems I mean seriously reduced platelets and hemoglobin.  By now I was feeling very weak and dizzy and having a hard time even walking across the room.  My gums and nose were bleeding but not heavily. By now I had received my 4 week UND, and the pronouncement that I was a rapid responder.  With that bit of encouragement I was determined to crawl through glass to reach the finish line. 

By week 7 or 8 my blood problems became increasingly worse and my riba was reduced.  I believe it was about this time that I noticed my face was swelling--alot.  I had also been having some trouble swallowing and felt that I was not drinking enough water, although I was trying. I told my doc about the worsening shortness of breath and chest pains and for the second time he suggested that the risks might be outweighing the possible benefits and that I needed to seriously consider stopping tx.  Instead, we agreed that I would see a cardiologist immediately and that I would have a blood transfusion.  He would not agree to prescribe procrit, however, due to the number and severity of my side effects.  Mentally, I felt that I was in an alternate reality. 

The last 2 weeks of my tx things only got worse.  All of the above side effects seemed to be worsening at an increased pace. By week 10, I ended up in the hospital where I was given 2 pints of blood.  The first pint made me feel better, but I had an adverse reaction to the second and ended up feeling worse.  At this point my doc told me it was simply time to stop.

I am now about 3 weeks post tx and, although I am no longer taking the drugs, my hgb is dropping again and in the past week my platelets have dropped 32 points.  I am getting blood tests weekly and now they are checking stool samples for signs of internal bleeding.  More tests are likely. I am still having some of the side effects of tx, but the ones that concern me most, in addition to the blood values going down instead of up, are the shortness of breath and the chest pains.  In short, I am not out of the woods yet, but hopefully things will improve instead of getting worse.

I think it is a question of using good common sense.  If it may effect your ability to earn a living then think twice before blurting out personal information of any kind.  Health problems scare people and that goes double for infectious diseases.

I feel very lucky that I have my own business and, therefore, do not need to discuss it much in my work life.  I have told my work mates (who are very close in a small law practice) and who are holding down the fort brilliantly.

In my personal life I feel more open about it but not with everyone. Obviously, anyone close who will be a support system for us deserves complete honesty.  I have told my entire family and only a couple of other people who I trust and care about.  Anyone else is told on a need- to- know basis.

Then there is the issue of advocacy.  I am feeing somewhat obligated to speak out about this in some manner in order to help improve the situation in the future. Must be my naturally big mouth doing the thinking here.   

Caryn wrote:

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That is great information! Thanks so much!  I do not work for a very large company so I there is not a health dept. to filter information to HR.  I really feel as though I may not be able to work. I am very active at work. I move around quite a bit and I am inside and outside...the Texas heat is NOT pleasant. I also work with the public and I am in a sales environment. If you are not feeling great, then it is hard to perform your job to the companies expectations. Were you able to work a full 8 hour day? What type of work do you do?

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 Actually did much better than expected. Basically my doctors recommendation is that I do not work more than a normal week (40 hours) We stuck with this. I work in IT and it's a very stressful job where you are pushed to work long hours if needed, sometimes even if not. This helped greatly, If I had to work more, I may have been able to handle the hours, but the stress would have made thing difficult. I never ever was pressed to tell anyone the exact condition. 

I remain anonymous about Hep C at work, as well as some other things. It's none of my co-workers business. But I have no problem telling my boss if the need arises. The medical dept does know about it and the other things. They have been flagging my liver enzymes for 15 years. I haven't told them about tx, but I'm thinking I should and will, as it will grease the wheels if conditions change. Right now, the sx are manageable and haven't missed work except for a couple of early afternoons. I am fortunate that virtually all of my work is on the computer, Live Meetings, and conference calls, and I can do this from home almost seamlessly, other than more distractions.

That is great information! Thanks so much!  I do not work for a very large company so I there is not a health dept. to filter information to HR.  I really feel as though I may not be able to work. I am very active at work. I move around quite a bit and I am inside and outside...the Texas heat is NOT pleasant. I also work with the public and I am in a sales environment. If you are not feeling great, then it is hard to perform your job to the companies expectations. Were you able to work a full 8 hour day? What type of work do you do?

Caryn wrote:

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Is everyone being honest about the hep c at work? I am seriously having issues telling anyone at work. I do NOT feel like there would be much support. I work in a cut throat environment and people use whatever they can to get rid of the competition.

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 Not sure how big the place you work is, the bigger the better as they would want to protect themselves against lawsuits, but you should have a right to privacy. In my case, my company has a special department to handle health situations. My doctor faxed them a form explaining my condition and treatment and his recommendations. That office in turn filtered and send off their recommnedation to HR, who in turn, just told my management what I can or cannot do.

I would suggest you go to your management or HR department, let them know you are going through a medical condition you that you would prefer not to disclose, but that treatment will be required and may limit your work. In the United States, depending on the severity of your response to treatment, you may be covered under the American Disability Act. I was concerned about work and did some research, what convinced me to disclose was this link: http://askjan.org/media/hep.html

same exact here

Hi Sed3:  You are doing the right thing to take sick leave.  I am also an attorney and former public defender (I remember the case loads well) and you are doing your clients, yourself, and your colleagues a service to make those arrangements now. 

There is simply no way to know how bad the side effects will become for each person but most people seem to experience them getting worse (to varying degrees) than they are in the beginning.  Best of luck.

Sed3, good for you, you did the right thing in taking the time off. Hopefully, like me, you'll find that you feel much better when finishing the Incivik. I didn't do it during the Incivik but afterwards I also started drinking V8, seems to help.

i work with at risk youth as well. i get home and i need a sleep. i took a sick day today. finally. just needed time for me...

i manage, but its hard... havent told my work so far, but if things get really rough i will (who am i kidding its rough already haha)

seriously tho, i decided today, that sick was the new normal, i just plug along and have to make do... whats the alternative eh.. ?

Incivek is Telaprevir

Victrellis is Boceprevir.

Brad

Hi Sed3, and Kim.

I am just finishing week 17 of the incivek triple TX. 

Sed3 - I have been able to work the whole time, a busy, on my feet job.  My first week or so was like yours, but the pegasys gets easier.  I haven't had emotional problems or anger, I just get grumpy sometimes (probably just because I don't feel that great on some days, due to TX).  I found the telaprivir  VERY annoying, but it didn't interfere with my work much.  Be SURE you stay ahead of the rash and itching.  I swear the ceterizine (generic for zyrtec) was a huge help.  I ended up taking a once-a-day pill, twice daily.  And of course you heard, "Drink lots of water!"  Every time I slipped up on that, all my side effects went to hell, even the rash.  The good thing is, the Incivek is over before you know it, then things seem a lot easier.

Kim - I was able to easily do aerobic exercise too, especially at the beginning of TX.  LSD (long, slow, distance) seemed to work best.  I can still do that, but as the hemoglobin drops, so does the anaerobic threshhold.  For the last month, I have suspended those workouts.  I am just watching my diet more carefully now.  After my last good workout, I found my recovery time was over 2 days, and I felt terrible.  I have decided just rest my body for the 2 months of TX I have left. 

Oh yeah, like Shep said, sleep has been a big help.  I went from 6 1/2 hours a day to 8 or sometimes 9, and I felt way better.  I was amazed at how much it helped!

I wish you both a speedy "undetectable", and a smooth TX!

Brad

Hi - I'm 49 years old and 4 days into treatment:  ribasphere, telaprevir, pegasys.  Genotype 1B.  My concentration is shot, and I feel like I have a constant low-grade flu without the fever.  No energy at all.

I'm a public defender in Brooklyn, and I go to trial, work arraignment shifts for 8 hours, and do lawyer stuff.  I've told my supervisors everything, and given them info on treatment and side effects. 

I think the side effects will, if anything, get worse.  I am going to ask for a modification of my job duties, which will be difficult for them to do and, more importantly, will impact my colleagues.

Do you think the side effects will get worse?  Any advice or words of wisdom is greatly appreciated.

Thanks!