Few Questions re: Working Full Time on Treatment

[LindaC1207]

I will be going on treatment at the end of August, beginning of September.  I am genotype 1a and will be treating for 48 weeks.  I would like to hear from those who had to work while being on treatment, how bad was it for you.  Did you make it to work everyday, did you experience brain fog and found it hard to perform you job to full capacity?  What did you do if your hair fell out.  I am an administrative assistant and have a pretty high profile job supporting 8 people in a pharmaceutical company.  I'm worried that I might not be able to make it to work everyday, which is okay, they will let me work from home but not everyday.  I would like to think that I won't miss much work though, I would hate to put my job in jeapordy, I worked so hard to get to this point in my life.  

Any advice you can give me is greatly appreciated.  I can't tell you how much inspiration I get from reading all your posts, you are an exceptional bunch of people and I consider myself lucky to have found this site.

Linda

[LindaC1207]

To all of you who responded, thank you very much, you've all be very helpful.  I do realize that I could get lots of side effects but then again, I could be one of the lucky ones who gets very few and I am trying to have a very positive attitude regarding that.  I feel that I will do okay and I intend to take this treatment one day at a time.  

Yes 48 weeks is a long time but then I see that some of you, i.e. nygirl7 did 72 weeks, and some of you are on your second 48 weeks of treatment, well you have my utmost respect and admiration.  You make it easy for me to treat, yes, it's a no brainer, I'm sick with HepC and yes I'll try the treatment, if I get too sick, I'll stop and wait for better drugs, but hopefully I'll be as strong as some of you and go the distance and I'll drag myself to work every day and do the best that I can at that time.

Best to all of you!
Linda

[Trinity4]

I have question for you.  You are a practicing surgeon.  There has been much debate on this forum as to whether we should disclose to dentists, labs, doctors and so on that we have hepc.  As a surgeon, did you disclose your illness to your patients prior to performing surgery?
Trinity

[JackABCD]

By all means we are all very  lucky to have this site.  Keep staying with us, this is a great site, it is a god bless for us. I am now on treatement, Geno 1b, now on 34 week of the treatement, I am UND since week 6.

It took me some years to come to decision on the treatment itself, if to treat (I failed once, before Peg was in the market), what o do with work, quite similiar to many of us, maybe all of us.

I personally felt very bad before treatement, I assume I had a lot of liver inflmanations events.

Now aout the treatement - I take Peg & Copegus, It is not easy, there are some side effects and they are not pleasent at all, but at the bottom line - I feel better then before treatement, even much better.

For every side effect I faced there is a treatement, but every side effect is like a project for you - to diagnosed, find the best doctors, read in this forum and in the net, find the right remedy.

To conclude my recommendation - go do the treatement, it is really a very good treatement today, you can always stop if you can not tolerate, but I believe that like myself you will find out that it is not so difficult and that you can do that, it is much easier treatement then before there was Peg.

Hope I helped, few months ago I was exactly at the same place, and great people in this forum provide me this excellent recommendation, let god will bless them for that.

Good luck,
Jack

[denise358]

hi

I  just did my blood work for the 12 th week i  am still waiting on the results it takes forever  to get back but the good news is the procrit has started working so i have a little bit more energy . But  i sure feel the bubble in my head people at work talk to me and i am just in a daze like i can't  focus on what there saying it so weird a little bit funny after i realize they were  trying to ask me something  and i just ignore them .  
I just signed up for the family medical leave at work becuase my job was bothering me about  leaving  or not coming in so i am on intermediate leave so they can't fire me for  my dr's appt .well hope all is well with you

[Kristina538]

Hey Lynda - I'm somewhat of a newbie; I'm in week 4 of tx.

I asked for 3 months leave without pay and a possible extension which was granted, and luckily my boss has said to 'pull back in the leave' if I want to go back within that time.   My job is 'full-on',  and I was having trouble looking after myself as I wanted to; having been there 10 years in June, it was a opportune time to ask for a break.  (I hope I go back soon though because the $ are running out!!!).

The most wonderful thing about having this time off is actually having the time to look after myself.  I have needed to drink bulk water, and I know I wouldn't have managed that as well at work, plus I was anxious about the side effects and the blood test results early in the treatment.   I'm managing to get into a routine of lots of small meals a day and feeling better for it.  A couple of days I've gone back to bed but that was early on when I was unable to sleep during the evening.  Now that I'm hitting the 4 week mark, and see a bit of a pattern in my weekly sides,  and am starting to feel confidant enough to start thinking of when to resume work.

The downside is that i can get introspective - when I start getting like that I get out and exercise or housework;  I haven't been too tired, just a little anxious and lacking in sleep - seem to have sussed that now.

I just wanted to see how my body would handle it;  I went on Mono therapy years ago and did really well - only one day down.   I was going to keep working full-time;  I'm personally glad I didn't, but as mentioned above, it seems to depend on the individual and also possibly related to your general state of health.

Best wishes for the start of tx - we'll be watching out for you - these guys have been a real Godsend to me..

[Facta_non_verba]

Guess I'll chime in here, too. It's true that people react differently to treatment. Luckily, I don't have as many symptoms as some others. Here are some of the things that have happened to me since starting treatment:

-Had a sore throat for 3 months after starting treatment. Almost a year later it's back. Damn!
-Had some badass mouth ulcers for a while
-Had a chronic cough for months
-Went from 185 pounds to 167
-Lost some hair, but not that much
-Trouble with my memory. Lose my train of thought easily. Repeat myself. Repeat myself.
-Hemoglobin dropped quickly from 16 to below 11
-Personality changes which my family see much more than I do. Apparently I'm not too fun to live with nowadays.

That said, I'm a surgeon with three offices, and I have lost 3 days of work since starting treatment in July 2007. I'm on week 53 of 72. I also started a new business and am learning a new foreign language, so I haven't had it that bad. I'm at a teaching hospital, and it's embarrasing when I lose my train of thought when I'm working with the residents on my service. People in the O.R. ask me if I'm OK because I've lost so much weight, which *****. Whereas I used to make my residents take the stairs with me on rounds, I now have to use the elevator. I'm very grateful that I don't have a job where I have to swing a hammer or do other physical work. Some people here have had that type of job and were able to work throughout treatment. All I can say is "wow."

Four things that have helped me along the way:
1. I've been in Recovery for several years and have a huge support group.
2. Procrit for anemia. Before I started on Procrit I needed to sleep all the time. I even had to take a nap between cases. It took about 2 weeks before it kicked in, but what a relief.
3. I was started on an antidepressant prior to starting treatment (Wellbutrin). I found out recently how much it helps. It makes me feel a little jittery and gives me a dry mouth, so I stopped taking it. Within three days I starting sinking into an agitated depression. It was awful. I started back on the antidepressant and feel much better.
4. This forum. Although I'm a physician, I've probably learned more about Hep C and its treatment from this forum than all the other resources combined. Thanks to Jim for all his work. And thanks to Magnum. Dude, you are my hero. Four treatments and getting ready to start again. I'm serious when I say that if there's anything I can do, I'm there for you.

God bless everyone on this forum.

Jeff
Facta non Verba (talk less, do more)

[Magnum]

Having been through 4 treatments, as far as working full time, I feel there are two main factors in being able to.

First: How well you can tolerate treatment. For example, the loss of oxygen due to the drugs can be debilitating in a physical job. In my case as an entertainer, I have to sing and continuously gasp for breath. This was very difficult for me and I was NOT able to work full time.

Second: The mental intensity of a job. Mentally, if you're having to constantly deal with the public, there is always some idiot in every crowd who will push your buttons. The result could be a breakdown of patience on your part, leading to a possible physical confrontation.

I feel that anyone who has these type of taxing jobs, has to be aware of the points I made. Best of luck...

Magnum

[Marc1955]

Linda – The folks who have posted have offered good advice. Since the side effects impact everyone differently, it's hard to be decisive.

I am 51 and own a small business. I'm in my 26th week of treatment. Based on my experience, I would say this will be the hardest thing you have ever done, but it is doable. In my case, the sides didn't get bad until about 10 weeks in, but when they did, it was pretty rough. At their worst, I'd take about an hour to get through my morning shower, since I needed to lie down between the shower and shave to recoup my energy.

And, yes, for me the "brain fog" has difficult to deal with. I am forgetful  and sort of "dumb" as a result of the treatment.

All that being said, I've never taken a day off from work. After about four months, the sides improved considerably. Now I've established a pretty good baseline for moving forward.

One thing to strongly consider is going on an antidepressant a few weeks before the treatment starts. I did not and I regret it. It's very hard to deal with the challenges of the treatment when you're also depressed. The Interferon definitely messes with your brain chemistry. The antidepressant can also help with the brain fog.

Good luck!!! You'll make it, but it is tough.

[nichole572]

I have been on treament for 10 weeks and I work full time midnights at the local hospital. I havent missed much work since I have been on treatment.In fact the time I called in since on treatment had nothing to do with my treatment. Everyone is effected differently on treatment and for me as long as i rest when my body tells me to rest I can manage it. The best advice I can give you is to listen to your body, drink lots and lots of water, eat right and try and excersize at least on the days you feel up to it and again the most important one of them all listen to your body. So far my really bad days are when I am on my period. Since the ribivirin makes your hgb low as it is having your period doesnt help things. At least for me. I make sure that I rest up before I am going to start so I can get through it. It isnt horrible I am just more tired during that time of the month. Good luck!!!!!!!!!!!!!!!!!!!! Ohjhhhh my mom also did treatment and she didnt miss work either.

[sunqueen]

I just did shot 4 and have found it challenging to work at times. Everyone has different side effects and different types of work responsibilities. I've had some pretty intense side effects almost immediately. I think it might be easier if I had a more traditional office environment job, but I don't.I got documentation to get removed from taking call on weekends.After a busy 40+ hours work week, there was no way I could do 63 more on stand-by over the weekend and then go back to my next usual 40+ hour week.

The thing killing me is the whole in and out of the car in the blazing FL heat all day.They said I could be cut back to three patients a day instead of 4-5, and that's cool.I get so out of breath on some of the large campuses I have to cover in various community types - condos, SNFs, ALFs, private homes and hospitals.

So I can cut back on taking call for a few months, reduce the patients I see without getting crucified, can go home a little early if I get wiped out and won't have to worry if I need to take a few days, here or there.

On the other hand, my employer has reserved the right to put me out if I can't meet the most basic duties of the job. No one seems to be really worried. So far fatigue, aches, rash and headaches are the most annoying things I regularly deal with.

I have all of the "just in case" papers ready. Good luck.

[indyjo]

I've made it through 48 weeks and now almost finished with 2nd round of 72 weeks. My job is nonphysical and I've managed to hang in there. The brain fog is the worst for me. I have not told anyone at work about my tx cause I work in the medical field and I hear nurses reactions to others with this diagnosis. I would sign up for family leave "just in case" if i were to do it all over. My doctor said he would also do paperwork for disability.

[geterdone]

It takes anywhere from 2 to 6 weeks before you really start feeling the benefits of Procrit. So hang on, help is on its way, Procrit is working as fast as it caaaaan. Dose you head feel like its in a bubble, Oop’s sorry wrong timing. You’re doing fine…

Jasper

[denise358]

  yes they put me on Procrit my first injection was  this past  week  and i swear after i did that injection the next 3 days i was in tears  and  still feel so very tired .

[Trinity4]

You've captured my feelings and experiences exactly - How very good!!!  I guess I'm one of the "normal" type sx people.  Whew, lately the worst thing is fatigue - I'm so darn tired all the time - fevers and aches, not so much.  I haven't had a fever in 2 wks so the imagination starts to churn and I think, oh no, I'll bet the meds aren't working anymore.  I need a fever!!!  Where's the logic to that!!!  Crazy stuff all the time.
Trn

[geterdone]

Hang in there Denise, for some the first 12 weeks are the hardest to get through and is usually when freak time hits, (like is it ever going to end), short answer, No. Your body has and is going through some drastic changes and hopefully should start to level out some. Some have problems with anemia and the (Procrit) if that is what you’re taking, do come with some additional side effects that mimic those of the INF and riba. It hit me pretty hard during this time, and yes tears rolled at a drop of a hat over the simplest of things, like I stubbed my toe, omg I though it had to be cut off, lol. Anxiety and the public, yup, you know you’re sick, hope they don’t see your sick, got to act normal, put on the face and be on top of your game, right! Ain’t happening. You know your sick and feel very sick and it shows but you can’t hide it so paranoidisim sets in, they looking at me, do I look that bad, am I the subject of talk in the office, and it builds from there and then the withdraw starts. I hate to say it because I personally do not like AD’s and did not use any while treating but you want to talk to the doc about this, quite a few people here have used them and has helped them a lot while working and keep moving forward in the journey and hang in there your almost at the Plato of the maxc cycle of the drugs.

Just curious, when did you start taking meds for the anemia?  

jasper

[denise358]

I am on my 9th week of treatment  and i am having the hardest time ever
I have anemia because of the treatment  so know i am on another medicine I am tired every day and latley someone asks me how i am and i burst into tears now they want me on more medicine. I am getting so stressed at work i have anxiety attacks every day i go  . I don't know what to do my viral load has dropped drastically and i am trying to make it to 12 weeks to see if it  is undetictable. I did not sign up for short term disability  when i first started my job  i wish i did .

[nygirl7]

Trin is right! This treatment is about the hardest thing any of us will ever have to do (for some).  My God some days I just knew I couldn't make it...I couldn't go on...and I came in here and let others build me back up and give me confidence and I'd say ok only one more day and just take it that way. I made it the 72 weeks relying on the wonderful people in here - without them.........I just wouldn't have been able to do it.

I know that sounds sort of stupid but - just having someone say "oh I understand" who really DID understand.........that helped me more than anything any doctor or pharmacy could ever provide.

Count on the people in here to help you through.  It's the BEST tool you have to fight this disease.

[Trinity4]

You are NOT a loser because you quit.  Don't ever feel like that.  This is hardest thing I've ever done in my life.  There are days I don't care about anything and yeah, I talk the talk but I'm not sure I can walk the walk for 48 weeks!!!!  You gave it your best shot and it didn't work at the time but your waiting for new meds so that doesn't sound like a quitter to me.  I wish you the best when you do treat again.  
Trin

[n49]

I was off for 11 days and was READY to go back by then. I dealt with the hair loss by pulling my hair back and putting cute pins in my hair. I also felt okay at work .. headaches once in a while. After a few months the itching and scabbing was pretty bad but you'll be ( if you live a colder climate ) wear long sleeves to cover it if necessary. My rash was not the usual.. it was all over including my scalp. I had to quit. I was a loser but will try again if new meds become available AND THIS TIME I WONT QUIT!  Give it your best shot!

[wed1942]

Hi Linda!
I've been on treatment for 18 weeks now. I've been on Neupogen for 12 of those weeks. My white blood cell count was dropping a lot so looks like I'll have to stay on the Neuogen throughout treatment. It's only come up to 2.4 even with the shots.

I haven't missed any work. I work full time but do 12 hour days twice a week and one 8 hour day. I work Wed through Fri. Sat I pretty much sit on my rear end and do nothing. I have four day weekends so I've been very fortunate in that I have that time to recoop before going back to work. I'm definitely more tired. Get winded easier if I'm walking uphill or doing much of anything. If I get tired, I just try to rest.

In the last two weeks I've noticed my hair falling out more. What I've done is start investigating buying a wig just in case I need it. Just don't know if I can stand having something on my head all the time. I told my kids that if I went bald I was going to paint my head red and green and just have Xmas all year long.

I really haven't had any other symptoms. I consider myself very lucky so far. Good luck to you.

[Trinity4]

I will take my 12th shot this Friday.  Hopeful and I are the same age.  A young 56!!!  I haven't missed a day of work yet, but I am going to be honest and tell you the fatigue is my biggest problem.  Fortunately, I do not have a physical job, just sit behind a desk all day and talk.  I haven't been bothered too much with the brain fog, no rash or mouth sores yet and my hair is still intact but I did cut if short and have been getting many compliments since.  I have to work because of insurance so I concentrate on the tasks at hand.  When I get home it's a different story.  No more superwoman syndrome.  I try to prepare a healthy meal which isn't always possible and I'm usually in bed by 9:00.  I haven't been sleeping very well and my doc wanted to prescribe something but I said no.  Lately, I've had neck and back pain which was mild prior to tx but now it really hurts and I just take a tylenol and lay down.  Fevers and fatigue are my enemies right now but not enough to put me down yet.  I'm very emotional but don't let it show at work.  Hubby gets the brunt of it!!  HA  I've never told anyone at work and don't plan to unless things change drastically.  I would say my sx are moderate at this point.  Everyone suffers differently and I think a lot of it depends on how we cope and the extent of the sx.  I've learned to listen to my body and it takes precedence over everything right now. It's rough, not doubt about it, but you can do it.  Keep the attitude positive and fight the battle.  We are all warriors.
Trin  

[geterdone]

I worked through 53 weeks of TX and missed about 6 weeks throughout that time, it was not fun but just took it one week at a time and rolled with what the meds had thrown at me and kept a positive attitude knowing that it was not going to last forever. It takes a strong determination and a guiding spirit when the ups and downs hit through this journey but just keep moving forward. It can and has been done as you will see in the near future and many here will be there to help you when needed in trying to understand what your body and mind are going through on different levels while on these meds and knowing what to expect by reading the inserts of the meds being taken. Good Luck to you when starting.

jasper

[suzeeeq]

I am learning how to operate this forum so I think I posted my comments in the wrong place.  I hope I get it right this time.


Linda,  

All the questions you asked were the ones I have wanted to ask.  I have been reading this site for about two months.  I start tx this week on Friday.  I am scared to death. I go in tomorrow to get meds and learn how to administer the shots.  I am genotype 2b and will go through 26 weeks of tx.  I have a very good chance at clearing the virus.
I have two friends who have offered to come over and give me my shots but I really feel as though I need to be able to do this myself.  I have a terrific husband who said he would give me my shots but his is the type that passes out at his own injuries so we will have to see how that goes.  I told my close coworkers and I figure what the heck they can take me as I am.  They have all been wonderful.  As I was preparing for this and the day after I had my bioposy my 62 yo brother became ill and died within three weeks of  billiary duct cancer.   After taking care of him in the end I decided that my was a very important part of my body and I had to give it a shot. This forum has been great and I am going into it strong and ready to take it on.  Thanks to everyone who writes here it really does help people like Linda and myself get prepared.  It still doesn't take the fearFears and phobias away.  

[R Glass]

I know it starting to sound like a broken record but we all react different.
I treated for 24 weeks and missed 1 day of work. This is not counting all of the Dr. visits and days I had to leave early because I couldn’t go any further. I don’t want to deceive you, sometimes it was a living hell and I walked around like a Zombie. Like NYgirl, quitting work was a last option because I have people depending on me.
Some people breeze through it and some people are bed ridden. I was somewhere in the middle. I did sit down and explain my condition to one of the owners of the company. I volunteered to resign around week 16 because I knew I wasn’t carrying my weight. He asked me to stay on and if I could not take it any longer, he understood.
I had to cut my hair. I kept it about 10” long and cut it short. Being a male and starting to go bald on top probably didn’t help any.
Suck it up if you can but listen to your body. Regardless of what some may tell you, it is not a “Mind over Body” situation. If your body tells you enough is enough, then enough is enough. You are not going to know until you jump in. I hope this helps in some way, R. Glass.