cant get a diagnosis for liver problems

[Mom48]

Hello
I need to know how to get a correct dianosis on my health problems.  I have had hep c for almost 30 years and my health is not good, since 1996 I have been going to diffrent G.P.'s to get help when I cant stand the symptoms any more.  I have self educated myself on hep c and I have all the classic symptoms.
Today I am so tired I dont even want to brush my hair. When I tell the doctor about Hep c they run tests and tell me they cant find any thing or that I have Epstein Bar or that it is in my head.  What shoud I do ?  I need help I am tired of being sick all the time.

[jmjm530]

If that's the case, I'd discreetly collect any and all evidence and go see a lawyer.  As they say -- why get mad -- get even. :)

[cuteus]

it is a federal law; HIPAA. She has a case in my opinion.

[jmjm530]

Pardon if some of this was covered earlier but my low Hgb has put me in a little fog lately. :)

I would think it illegal for an employer to make an employees medical history public knowledge within a company. Definitely worth checking out to see if this is true in the state you work in, and if so, you might consider legal action.

-- Jim

[NYgirl]

Thank you for your words.  I was VERY upset as I too planned on keeping this very quiet.  Now EVERYBODY knows in my whole department. Spread like wildfire of course.  

I only took the two days off because I kept FAINTING and there was no way around it!  Discomfort I don't mind but that I couldn't do.  I had plenty of sick days left and figured well they are mine to use right?

All of a sudden it's oh no ... she's not here! She mustn't ever be coming back! Oh no who is going to do her work!  With letters going everywhere.

BS.  I have learned a very important lesson I tell you that much. People suck.  But not you guys!  :)

EGGS! EGGS! EGGS! (shortened quote by Goofy)

[cuteus]

Nygirl; I only told my supervisor and asked that she do not forward the information to anyone, including personnel. there was no reason for them to know at the time since I had no idea how much sick time I would be using. We played it by ear. As it turned out, I did not use many full days(maybe one or two in the 72 wks) and mostly used partial time for appts. I also did not get hit with anemia as early as you did. Your supervisor was wrong in forwarding the info, without your consent (I wonder about the HIPAA compliance in that one) to the HR dept.  You need to make it clear that they are breaking the law.  I was able to keep my tx to myself the whole time. Even though I worked with nurses, I did not feel comfortable having to explain the disease to them and did not want to deal with the ignorant and undiplomatic.  Now that it is over, I don't care if they know. I just found out that my new supervisor's younger brother has ESLD due to hep c, she is very secretive about it, I guess because the older brother is a known politician.  Bottom line is, you do not have an illness that is transmisible by casual contact, so you are not endangering anyone at work, and confidentiality should have been kept. Big lawsuit in the making...when you are strong. GL

norcal: if your anemia is affecting your work, you need to insist that they intervene asap. You have to demand that they help you keep some qol and your job.  Don't let it linger to the point of destruction and loosing your job. Anemia is one side they can control.
best to you

[NYgirl]

Thanks. I do have all the appropriate paper work for FMLA at the doctors waiting for him to sign it.  So I am covered there.

It's just horrible that you bust your hump to come in to work and hold up all of your responsiblities...and instead of being like "thanks" it's like hum disease? Dont know if I want you around here right now...

Life lessons.  I was just so SHOCKED because I would never be like that with any of them that it came as such a huge surprise to see in print all this stuff about the disease (which according to HR NOTHING is supposed to be in PRINT about me at all (find out this from a higher up) so the fact I got this document at least provides some protection.

Of course...my yearly REVIEW is next month...  ;-)

As long as I have my benefits I should shut up though. Seeing how expensive this disease really IS blew my mind.

[Forseegood]

Hi sorry to be a budinsky on your thread, but this might be of interest to anyone here. As farfetched as this sounds, they are doing this in conjunction with the WHO, the World Health Organization. It seems they are now doing trials in Zambia on herbal remedies to help boost the immune system against the AIDs virus, because the AIDs drugs are so expensive for that country. They are indicating promise to at least help to boost the bodies defenses. It says in the article on the Associated Press that "they are working on reducing viral load and increase CD4 cells which defend the body." They pretty much made sure the herbs are harmless before they went ahead with the study, if I remember right. I'm working on finding out what exactly these herbs are. Pretty interesting even if its only preliminary. Here it tiz:


http://news.yahoo.com/s/nm/20051019/hl_nm/aids_zambia_herbal_dc

Jim: of course you probably wouldn't think of going under the knife now on tx, but this is minimally invasive laparscopic surgery - to deal with the problem of GERD, and it's gotten good results according to a French study. I think you mentioned you had this.

http://news.yahoo.com/s/hsn/20051019/hl_hsn/minimallyinvasivesurgeryeffectiveforgerd

p.s. you might of taken the wrong herbs and/or the wrong dose, just thought i'd throw that in there, he he he. Don't clobber me.

[vcj]

I think you would have symptoms of Hep C after 30 years, I've had it for over 40 years, but I just found out. That's why I've been so sick.  Not all gastro's know the symptoms or have seen them in practice, but you should find a good GP first to help find a good gastro.  Don't forget, they haven't studied Hep C for very long. I think the Red Cross told me I was the oldest to have it.

[GoofyDad]

As further validation to the liver cleanse and tonic and crowd (ducking for cover ;-) the stuff posted by Mike has an abstract indicating green tea cuts HCC risks. Sign me up for the tea brew kit, folks. Speaking of a brew, .. aw heck - there I go AGAIN....

[new-sojourn]

I was infected via transfusion in 2-67.  cl'd 4-02.  so i'm almost 39yrs since exposure and I'm sure there are tons of people who had it way before me-obviously, since the blood supply was already tainted.

So even the Red Cross doesn't know jack about hep c.

[GoofyDad]

I read recently that current mutations are thought to go back 200 years, with the original virus dating back thousands of years. Yet one more reason not to choose gladiator as a career path.

[Forseegood]

Where's Mike? What tea? Who's the gladiator????

[vcj]

Hep C has been around for a long time,my friend who was under gastro care for other problems, by coincidence the one who did my biopsy 1 year ago, has cirrhosis of the liver because the gastro didn't know?! That's why I got a new gastro.Evidently he only opened practice in our area 2 years ago because of so many people with liver disease. But all people, are not equally affected by it, so hense the delay in cirrhosis. She is being moved, to a larger medical center because of her husband being angry and put on transplant list. It does pay to shop for a good doctor.

[NYgirl]

Sorry to intrude.

Just found out that my job wants to bring in a full time temp to do my job and put me to doing errands. They said I have a disease and although I "come in when I feel up to it" I'm letting things fall through the cracks.

BS!  NOTHING has gone undone at ALL.  In fact my boss was OUT for two weeks and I had hardly anything to do at all!!!  I took TWO SICK DAYS (and i have plenty of time LEFT that I never used so why not! that is not "coming in when I feel up to it").

It's discrimination pure and simple. RIDICULOUS I am so livid I am going to fight this.  

Asked the boss what did I drop? And he couldn't answer me back ANYTHING and instead said I "look tired" all the time.

Nice.

sorry I just had to spew this out at somebody. I'm just so upset.

[jmjm530]

Forseegood said previously: "p.s. you might of taken the wrong herbs and/or the wrong dose, just thought i'd throw that in there, he he he. Don't clobber me.'
----------

Gee, why didn't I think of that? :)

Have I ever implied otherswise?????

Again, for the last time (why do I have to keep saying this) I am not against herbs and vitamins. My posts are very clear. I simply  have challenged some claims/studies here and there, did have a bad  experience with herbs, and have personally chosen not to take them for now.  That, indeed may change in the future after treatment, or it may not. I'm pretty open. Herbs/vitamins/supplements is a big and complex field (like conventional medicine) and I truly hope it's Ok to find fault with parts of it without being labled "anti-vitamin, anti-herb".

I have no doubt this will come up again but can at least the two of us not have this discussion again. :)

Thanks for the Gerd article. I wish they identified the type of operation. I'm assuming it;s the Fundo they do here, maybe with a less invasive procedure.  Fortunately (actually unfortunatly) the GERD now has dropped down to about  number three in my list of sides but thanks again.

-- Jim

[jmjm530]

That  truly sucks. Unfortunatley thats what sometimes happens when you confide in people. On the other hand, you probably felt you didn't have much of a choice with your supervisior. This disease teaches you a lot about yourself and other people. Regarding the latter, my expectations have dropped quite a bit. Hope it works out but try and keep most of your energy/focus on yourself and treatment. It's not worth letting the situation and these people bring you down.

-- Jim

[NYgirl]

Thanks so much.

I just got called in and got this elaborate cover story - but you know I saw the confidential memo LOL and read it and know what it said.

Even people you believe are tolerant to the disease...sometimes are lying.

There is a whole big paragraph in there how they looked in to my disease and it is NOT communicable in the office place it is ok for me to be here.....DISCRIMINATION, DISCRIMINATION, DISCRIMINATION!

I did NOT want HR to know of this disease but my boss insisted on telling them...now I take two sick days and it's a national emergency and I've fallen apart right?  Should have said I had the flu, nobody would have known any better.

I am concentrating on ME.  Tomorrow I will go get the bloodwork for the 4 week PCR and concentrate on the results of THAT.  It is more important to me than anything.

thanks JIm like always for calming me down. People just suck.

Although one of my coworkers brought me in donuts again today ;-)

[cougareyes]

If you are eligible for FMLA you may want to check into it. Your doctor can file it that says due to your tx you may not be able to maintain a 40 hr work week. It also says the length of your tx, and you may be off and on affected by the sx.
To have this filed with your HR Dept will help protect you from discimination. It will not stop certain people from sabatoging you because of their own discrimination. But it does give you some legal standing to protect your job, and most importantly your benefits; to at least get you through this tx.
It sucks to have to deal with this on top of our medical condition and tx. I know from experience.  Good Luck

[AK - Hepper]

Sorry, I just read that the doctors haven't found hep c ???

[azgrl]

Wow.  That is just awful that people will be like that. Good luck and keep us posted on what happens.  Keep excellent records on any incidents that come up.  You're a fighting girl so they are picking the wrong person to mess with on this one.

Another thing is if you work in a place with a lot people...then odds are you're not the only one with it...you just may be the only one with the guts to say so.

Deb in Az

[AK - Hepper]

Fatigue is getting to me lately, too.

Have you tried treatment, yet?

Find a hepatologist or a gastroenterologist that has experience with hep c.

GP's will get you nowhere.

[v eggie dip]

ewwwwwwwwwww you must have cooties LOL...Cheer up kiddo, at least you have a lighter load to carry at work, most people would welcome that!

*one cootie to antother cootie dippo*

[NYgirl]

We are all full of cooties you dip you are right!

That's what I am going to tell people now when they ask what is wrong with me (and don't you LOVE those people you BARELY know asking- like I saw someone in the medical group the other day who would NOT let it go...what's WRONG with you...but why is it wrong with you (i just said something wrong with my blood) she would not let it go and I did NOT want to say, I mean use some discretion fools!)

From now on I am going to say "Oh Me?  I have cooties, yeah that's right cooties!".  

That should stop them dead in their tracks! hahahah I LOVE LOVE LOVE IT!

[GoofyDad]

In the (10/19) thread on the San Francisco Liver Meeting, Miked pasted a link to abstracts being presented at the meeting. Somewhere in there is a summary of a study indicating consuming green tea yields benefits related to avoiding hepatitis induced liver cancer.

Hope that helps.