whats going on

im a 19 year old female
     in feb of 2004 i was told by the emergency room i had either hep a or b then i went back 4 days later because my conditions were worse {jaundice, iching , vomiting, weakness, and fatigue} they then told me all hep test came out negitive and admitted me into the hospital for 8 days with no answer to what was going on. i then was told to follow up with a gi and i did so and have been for the almost 7 months and he has decided to do a liver biopsy since my liver panel test are showing my results to be elevated and haved returned to normal since then i have developed a pain in the left quad muscle in my leg and show signs of quagulated blood i have also lost about 30 pounds and am down to 100pds i would like to know what my doctor is looking for? and what question to ask him to better understand what is going on because i feel really confused

[starfish30]

has the doctor checked for hepatitis c?

more informative troups should be on shortly to answer
u better than i.

im curious to know whether your doctor checked for hep c, your
symptoms show signs of hepatitis c.

[cheee]

yes i have come up negitive several times for al hep a b and c
i once read on a paper of mine acute hepititas 1 but when i ask him for what he thinks it is he says its a mystery to him
im so confused and scared im only 19 and i have a 9 month year old baby girl to take care of and i dont want to be sick
all my liver test come out adnormal and its been 7 months already

[starfish30]

im sorry for your worries.
take it from me, im  a young single mother of a son and when i found
out last yr i had hep c i freaked out. you will be fine. you will be fine.
there is nothing u can do right now so just try and relax and think positive. give ur little girl a great big hug and focus on her smile.

maybe u should get a second blood test with a diffrent doctor?

try and get some rest. you will know better next week.

others will be on shortly, weekends are usually slow as friday are shot night for those on treatment. i start in a few months.

good night and good luck.

[cindee]

"YOU'VE GOT MAIL".....hehehe, Cindee

[Showboat]

***Derail*** HAPPY BIRTHDAY!!!!!!

***Cindee*** Thanks for the "word" on Derail's BD.....Hope you are recovering from your shopping trip....sounds like you two had a great time......I used to love the back to school shopping trips with my mom....good memories....and that includeds MacDonalds too!!!!  Thanks for the memories as well.
Peace and love, gal.

[cheee]

??????

[cindee]

Hey girl, have you heard from LVDBYGOD yet? She e-mailed me with a new e-mail addy. I e-mailed her back, to see if I could post it to you here, as I don't have your e-mail addy. She was also trying another e-mail, that she had set up, but I haven't heard back from her. So I don't know if she got my e-mail or not. I hope we hear from her soon. She said she was doing good. Talk to you soon. I love ya bunches...still waiting with you on that next blood test....but I'm sure you will CLEAR!!!!! Hope you are feeling better and better with each day that passes!!!! (((HUGS @ KISSES))))) and Much Love @ Many Prayers, Cindee

[cindee]

Hi and sorry if the ???? was directed to me, but I needed to break in on your thread, we are allowed to do that. I just needed to get on the forum, and I have very limited use of my husband's laptop. I NEVER get to POST a question....or I should say I rarely get to POST a question...but it is allowed. Sorry if it confussed you. I hope you are feeling well, and I'm sure others will be along to help you more with your question. Sincerely, Cindee

[silvermoon]

there was am article published July 22..

July 22nd, 2004
"Roche Molecular Systems Issues Nationwide Recall of Cobas Taqman Analyzers and Cobas Taqman 48 Analyzers
Source: Company Press Release"
I didn't copy and paste the whole thing, coz I don't know if that is allowed on here..

it is on this site under 'news articles..
It is about  recalls of testing equipment which was found defective.. the fiber optic lens was off center or something.. and was giving false readings on HCV testing.. IF the equipment used to test you was faulty.. you need to be retested..

cheee, You have been ill for too long now.for them to say there is nothing wrong.ir that they don't know..... it seems to me, that you need to go to another doctor. Immediately!!  .. not all are up to date with what's going on, and if it is not in their specialty, they often miss important data.... but you really need to go to another doc. ..find another GI  or  a hepatologist would be even better..
I KNOW how hard it is to find medical help , especially good medical help..    I hope you find a good one right away.. and wish you well.

[cheee]

unfortuanlly my doctor wont close my case intill hes satisfied and im on medical so is he says if i refuse treatment then medical will make me pay for everything  
      anyways what am i to expect from a liver biopsy
do they put you to sleep or is it a local anistetic

[silvermoon]

Surely you can request another doctor.. there is such a thing as 'Patients Rights'. you have a right to a second opinion.....  If he is not satisfied,, then why the @*#@ has he let you be sick for 7 months and he hasn't gotten to the bottom of the situation???
Normal live biopsies are done with a local anesthetic..  they will tell you to hold your breath and not move.. you will feel a stick, and a bit of a tug or pressure for a few seconds.. and then it is done.. you have to lie on your side on a pressure bandage for about 4 hours.. and if there are no problems they let you go home with instructions to follow... FOLLOW THEM!!!
The Dr doing the procedure should thoroughly explain everything to you ahead of time..  Let us know what's going on.. will be thinkin of ya.. best of luck..

[cindee]

HI again, And welcome! I did read your post and I should have answered you 1st. I was in a hurry, and it made me "rude". I apologize.

If your doctor has let this go on for so long, I would ask him to refer you to a hepatologist. A hepatologist only studies the liver.

You need to have a liver bx.( biopsy ) done. That will be the only way to really tell you what's going on.

I know it's troubling you now, but you do need to see a different doctor.

A bx. is not hard. Mine was really easy. Your doctor will schedule you to go to the hospital...first they send you to radiology, and do an ultra-sound...this shows where the liver may be inflamed...etc. and they "mark" the area to be tested.

Then your doctor will numb the area of your liver, and go in with a needle and take a few samples of your liver. I asked my doctor if I could look at my samples. They were tiny, very tiny....and a light pink color...I think he took about 5 tiny samples.

It's not a painful procedure...he will ask you to hold your breathe each time he takes a sample and you will feel a little pressure.

Then you go into your recovery room....they will offer you something mild for pain, take it. It's weird that where you liver sample is taken it doesn't hurt...the only tiny bit of uncomfort I had was in my right shoulder...something to do with nerve endings...I think.

The bx. was over in about 5 mins. You do have to be monitored for any bleeding. And they want you to lie still for about 2 hours.

My bx. area was covered with a bandaid. My doctor also wanted me to go home and be sorta still for a while.

cheee, my hepatologist is a "nut". He's so funny...always joking...@ the appropriate time.

But we had a "blast" when he did mine! In fact when he touched my liver area before the bx. I jumped...I made the mistake of telling him, it didn't hurt...it tickled me....well that was the wrong thing for me to tell HIM...he took his fingers and tickled me, until I really peed my pants!!!!

The unknown is always the most scarey. I will be praying for you. Please keep asking questions....and stay with us here on the forum.  You will find a lot of very smart hepatitis people here. They are caring, loving, compassionate and down right sweet! I wish you the best, and keep us posted. Much love @ many prayers, Cindee

[silvermoon]

Hey !..  How are you?? sent you email... last time I heard from you , you were doing so hot..have been concerned.. ..glad to see you on.. hope it means you're doing better...Carol

[cindee]

We must have been posting at the same time!!!! Why are you up @ 2:40am????? LOL I tried to sleep and I couldn't! I'm going to try again!!!!! Nite all! See ya later today....hhen the sun is up???? YIKES>>>>we don't have hep c...we are VAMPIRES!!!!! LOL love @ prayers, Cindee ;)

[cindee]

TODAY IS DARYL'S BIRTHDAY !!!!!!!


HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY DEAR DARYL.......... HAPPY BIRTHDAY TO YOU!!!!! ~~~~AND MANY MORE~~~~~~ !!!!!!!

I LOVE YOU AND I CHERISH YOUR FRIENDSHIP MORE THAN YOU WILL EVER KNOW!!!!!!!

I am so glad you found this forum, for we all are truely blessed to have you with us here!!!! You are a WONDERFUL MAN, and I LOVE YOU WITH THE LOVE OF OUR LORD !!!!!!!! Cindee~~~~~~~~

[silvermoon]

hahaha.. so do you!!!   time??? what is that... my internal sleep clock has been broken and unrepairable for YEARS!!!  Vampires???   I used to be one for the Red Cross...haha...as for lack of sleep, besides being a nurse and a mom.., I think in a previous life I was an owl and a wolf... don't remember anything about being a 'bat' though...LOL..  anyway.. as the saying goes.."..they only come out at night!..."   sweet dreams all..and may your 'sides' be non-existent!!!

[hippiemom]

Just to let you all know, I have spent thousands putting people through treatment who couldn't afford it, getting individuals on treatment assistance programs who would otherwise not be able to afford treatment,  I volunteer 24 hours of every week to specialized care in HCV.  I know a lot of "tricks" to keep side effects at bay.  Like drinking 75 ounces of water a day, not smoking or using caffeine, stay away from canned or frozen foods, eat eggs, avacados, broccali, I have tons of very on the edge info... I go to seminars and am in touch.  I keep very hands on.  I am myself undergoing treatment.  Obviously I have some problems, that's why I am on a liver transplant list!!!

I do not waste my time whinning.  I help everyone who comes into my agency whether they can pay or not.

Thank you for not knowing a damn thing about me, and not even asking?  I wanted to know a serious thing about someone who thought they might look ill, I asked because I ws concerned about they thought, so I could offer feedback...Again, I hear negativity and people who have excuses to stay feeling sick and sorry for themselves.  What you believe becomes true.  If you think it will happen, it will.  Hair loss?  Yes, I've experienced it, gave some tips to minimize it.  Sleeplessness, yes, me too...been to the insomnia clinic, offered what I'd learned.  Sun sensitivity, yeah, every retroviral does that to you....But you folks don't want advice, because you are too busy boo hooing your situation and stuck in your own mud.  You can't break out of your own blinders for one moment to listen or try something different.  I swear, it's too depressing on this site, too negative, and stress and all that isn't good for the liver.  This is the absolute last time I will post.  I do have a lot to offer, but I think I'd rather give it to the medically indigent folks who come to my agency and are grateful for the place that offers hope, help and cheer. Not gloom, doom, and people who are unwilling to try or bend to anothers ideas.  You think you've been through it and know everything, so good luck to you, but I don't think you learn by being closed minded.  I'm sorry I ever got involved here, I thought at first it was a good place to exchange emotions, ideas, hope, but it's not, it's full of rejection and "nay, can't do this, tried that, didn't work, and blah blah blah."  My bad.  Thought this was a different sort of site.  No wonder Docs get fed up with patients like you.  I've never come across such a bunch and I work with addicts, HIV+ people, HCV infected people, people a stone throw away from death who are happier, more positive and lead more positive lives than you folks sound as if you do.  I'm sad for you.  Hope you get some help, you don't have a clue who the person you've just run off is, but you may someday end up in my office, and I'll recognize you from your defeatest attitude.

[silvermoon]

I am fairly new to this site, and have read most of the recent posts.. even went back to read a few previous ones.  NOWHERE did I see anyone ask you nor tell you to leave the site!
I think that what happens with typed words, where you acnnot hear the tone and inflections  in the voice, things are often taken the wrong way..
When I first read the comments  where this seemed to start going downhill, I felt that those who have been on here for quite awhile, were simply tryinng to make the point that.. NO ONE should take anything or everything that is said on here as the gospel  and go with it.. There are new folks coming on everyday,, who are very scared, confused and naive about the illness which has them in it's nasty web...
It is WISE for everyone to get all the info they can, and do research.. and take info to their doctors..especially since HepC IS NOT JUST HepC.. since it affects the liver, which in turn affects other organs and body functions, not only at different levels, but also at different rates.. there is NOT ONE set of definites for everyone across the board!! Then, when you factor in other medical conditions that each person may have, it is another game altogether!! The whole body.. the whole patient, has to be considered..  therein is the problem.. too many doctors are treating us like a disease.. and only one illness.. not as individual patients.. PEOPLE, with variations of disease...  I was taking certain herbs , for instance, which boost the immune system, however, I have low platelets and a high clotting time.. as it turned out.. one of the herb formulas I was taking, also had a few other herbs in it.. one of which lowers platelets and increases clotting time..Needless to say, I stopped taking it.
What everyone has said is that we need to take charge of our health.. be informed and aware.. This site is for sharing information, stories, encouragement,laughter... it is for building each other up so we can all get thru this..
Those close to us who aren't sick, get tired of us being sick all the time.they feel helpless because they can't make us better... they want us back to our old selves... so people come on here to share with others who KNOW what they are going thru..That is NOT whining and being negative... That is SMART, and self preservation.
Most people I know find it hard to believe I am sick at all, because I "don't look sick"..so they aren't terribly helpful, and don't GET IT that cannot just "snap out of it"..  I have seen so much love and friendship and encouragement on here.. There really is no room for egos getting in the way... coz we are ALL in the same leaky boat.. trying as hard as we can to plug up all the holes and stay afloat..til we one day have smooth sailing again!!  
Sometimes perhaps the words come out in print differently than they were meant.. We all NEED all the info we can get, but we have to remember, that with this dragon,and all it's little mutated dragons,  the game is ever changing.
I hope you will think things over, and contribute valuable information when you have it..what works for one doesn't work for all.. but if one person benefits from the info.. that is a very good thing.. one piece of info leads to another and another...
Well... THIS is just what I think and feel about the situation.. I wouldn't dare try to speak for anyone else..
Do what you must.. but it would be a shame not to share any and all info that is available..just because of words on a computer screen....   Sorry so long,, folks..
I am tired... sweet dreams!!!

[cindee]

Hey you!!!!! Don't leave us! I think you are a wonderful help to us! I HAVE been thru tx and was EVR, undectable thoughout tx and 4 months post tx...BAM! I relapsed! I AM going to do a clinical trial in Oct. I have a different doc this time. A hepatologist who gives a care! My last dr. I think "used" me to learn about HEP C!!!! I was told by his receptionist ...in the parking lot...that I had relapsed! I wasn't upset because I relapsed, I was upset because of the way I was told!!!! I knew I wasn't well...I could feel it in my body! I hope I have NEVER come across being negative or closed minded. I want all the knowledge I can get! I was sick on tx....I will admit that! MY GI let my platelets drop to 9 and did nothing about it! I kept on trudging!!! I hate being sick, but I don't "think"? I complain too much about the hep c. I used to absolutely LOVE chocolate, but Ilearned to eat carob. Now I don't want either. I have fibromyalgia and tissue damage and lower back problems...once again! Now that...I do complain about ...when I can't even "sleep" in MY bed! And I have to call my 80 yr old neighbor to come over because I dropped a pill that I didn't want my g.daughter's dog to eat! I know I'm not absolutely possitive 100% of the time, but I have a lot on my plate. My 2nd Mother is dying of signet ring adenocaromomia(sp?) a rare cancer, and I LOVE HER and I will miss her. I had a "ball" with my bx from my new hepatologist. He's a wonderful doctor! I for ONE don't want you to leave???? Why do you think we don't want you here? I try my best to be up-beat....Indiana has helped me thru a lot of my problems...right here on this forum. I would love to keep getting info from you. I start my clinical trial in Oct. and I will be here thru thick and thin. If you decide to leave the forum, pls e-mail me. I also have a daughter on crack and another REALLY GOOD daughter who just got sent to prison , her own sister wouldn't stand up and take the "rap" for her! MY Father is bi-polar and my Mother has disk problems and won't even "talk" to me about my hep c! She lives an hour away and has been to see me 1 time in almost 2 yrs. But my doctors..w/the exception of my hep. dr, are all in my hometown and I go visit my parents everytime I go to my hometown! I have custody of my 11, well almost 11 yr old g.daughter and I am active in all of her school functions. I don't look at life with "doom and gloom". I take one day at a time. I was a drug addict for 17 yrs and that was by my own choice or stupidity! Call it what ever! I work everyday on the phone trying to get more and more help for my dying neighbor. So I can't understand where you are coming from?????? PLease explain. I did read where your liver stage went from stage 1, I believe to stage 4 in a matter of months, and I don't understand that either. Please tell me about that! I want to know everything I can know about hep c, or how I can help someone else. I don't mean this in a bad way either....I just don't know why you don't like us here???? And I am being as sincere as I can be. Everybody IS different. And we all have diiferent thoughts on all aspects of life. Dang I think the world would be so boring if everybody was the same. So please tell me why you are leaving us????? There are a lot of people here who do need your knowledge. I know I get off the hep subject a lot of times....but I don't like to "dwell" on my illness. We have to have some fun here sometimes. So please don't take my post out of context......there are people who need you here!!!!! Will you take the time to reply before you leave? If I have evr up-set you I apologize...deeply. Sincerely, Cindee

[tina-b]

Just where do you get off? I would say everyone on this board is "very hands on" with hep c. For someone who "doesn't waste time whining", you have been doing quite a bit of it lately.
Your comment "people who have excuses to stay feeling sick and sorry for themselves" makes me sick! These people (including my husband) are on some of the most wicked meds the medical community has to offer and you have the gall to trivialize how they feel  because someone here doesn't bow to your superior knowledge?! MAYBE you should learn something about the people on this board before you start throwing around your  

[ellissg]

I feel just the opposite from you about this site. I don't agree with one word you posted, and I suggest you take a double dose of antidepressent immediately!

Steve

[GulfCoast]

In a previous post I tried to (gently) state that I thought that folks here were not being judgmental and that you should stay to contribute in a positive way from your experiences.

But really now, I think you need to step back and take a hard look at the tenor of your posts. If you were the medical specialist/professional that keep referring to would you take this approach?

I see you making assumptions about the people on this forum and dismissing anything that doesn't agree with your point of view.
Negativity? Pot to Kettle, Pot to Kettle, this is Pot, you are black, over.

I threw that in for laughs but as I said earlier I don't feel people on this forum as being negative. People are intelligent, questioning, skeptical, and want to know as much as they can. People are not sheep and will not blindly accept as gospel someone who states in an internet forum that their experience dictates that they know more than anyone else.

If you truly work in a clinic I hope you are kinder to the idigent that come for help.
Peace

[Dorothy and Toto]

This thread sounds like a few of you had a bad night!  I appreciate everyones input whether I agree or not and have become more thick skinned than 6 months ago.

It's a beautiful sunny morning in Florida.  I woke up feeling like a truck ran over me but after a great cup of coffee (that I know I shouldn't have), the day is looking good and we have lots to be thankful for.

Peace to you all and hears praying your weekend goes smoothly.
Dot

[rsterling]

From one hippie to another!

I really don't know what upset you so, but as a recovering derelict for almost nine years now, I would really appreciate some of the help that you described.

I posted a few days ago about some of the issues I've encountered while trying to prepare myself and children for treatment and came out knowing that the counseling you describe plus a whole lot more is exactly what I bet a lot of HepC patients need.

I am hoping to get you to post once more for info regarding all that you describe.

God Bless,  Robin

[DonL]

Though it's been said before, I'd like to add my two cents.

I think you're being a little thin-skinned. When you have people who have been on tx for 50, 60, 70, or 80 weeks and who have spent hours researching tx, etiology, and the rest, you have some people who are fairly knowledgeable. Most of us are also deep in tx, with its attendant physical and mental problems, let alone the normal human problems we all face.

In reading your posts, I don't see that people did more than comment or disagree with you. There is a difference between that and negativity, personal attacks, etc. You can't simply show up, announce you're an expert and expect us to hang on your every word. This is the Internet and just cause someone says it, don't make it so. Also, it doesn't work that way--one has to demonstrate expertise in order to be respected for it. And, there are legitimate differences of opinion about pretty much everything and if one of us has had a difference experience or knows something else, he/she is going to contribute.

I just did 43/48 last night and I feel like sh*t and and I'm angry and pissed off most of the time these days and I'm trying to stay positive and look towards the end of tx, but sometimes everything seems to conspire against it. I'm sorry you feel maligned and unappreciated and I am sorry that, you, too, are a fellow sufferer. We all welcome your input and your comments. We all have strong opinions and we express them, but we all care for each other and want us all to succeed. And, very few, if any, are resigned to helplessness, victimization, and negativity.

[TnHepGuy_]

It's always great to have someone come in here and tout their own horn non-stop. And then tell us poor peons how we just wouldn't be able to live without their superior wisdom.

Strange thing is though, hundreds upon hundreds of very fine people from here have somehow made it all the way through tx without your precious knowledge.

Thanks for dropping in. Don't let the door slam your ass on the way out.


TnHepGuy

[Sioux]

Have your ever heard of RIBA RAGE? ? ? ? ?
Since you are on tx, I think that you definatly have it.
As for whinning, can I offer you some CHEESE ?

The majority of everyone on this forum is like family. We laugh, cry, and comfort each other. We even have little family disputes.
If you want to fit in, don't be condesending. We all have a vast
amount of knowledge, mostly from each other and the heavy research of those on this board.

You don't have to leave. That is your choice. You should take the time to know the people on this board, before you make a judgement.

[honey1616]

Hey Everyone,,,Just got back from a trip to visit family and really enjoyed it!  Just now checking in this am to see how my friends have been doing and I have a couple of days of catching up on reading I see!  I hope everyone is having good days and NO sides!!  And yes,,,of Course SVR,,,for the whole Board!!

You guys are awesome in all your responses here and so I really don't have much to add because everyone has stated it so well!!  This is a SUPPORT Group so I am not going to made to feel bad about myself if I'm having a some bad days here and there due to the meds we are on.  

Hippiemom,,,My only response to you ever on this board,,was your support group that you stated all were well and honestly,,,My beliefs are,,,Why would they meet??  If they were totally doing ok and not needing a thing,,,Just to check in with each other on reports of hep c???  You are so wrong about this board,,,WE have some very awesome people here that have been through so much and on meds for a very long time,,,Or maybe even 2nd, 3rd, or more treatments,,,,Can you imagine?  That takes a very strong and yes positive person to do this and if they are having rough gos here and there,,,,Please by all means,,,come here to medhelp and talk it out!  We all have to do our own research and of course our experience talks volumes for hep c and treatment.  Any quack on the net,,,could claim they were a dr or expert and post all kinds of things for a regime for us to follow. Good Luck in your fight as we are all fighters and will SVR!!

[Indiana]

I just LOVE the feel of Riba in the morning.................