Biopsy

May 16, 1999

wrote:

>

> From: <lparker@...>

>

> Kirk & Lori wrote:

> >

> > Barb,

> > Good for you for being proactive.Ê I have had two biopsy's. I was in

> > and out of the hospital in 8 hours but I think it is wise to keep a 7

> > yr old in over night.Ê My experience has been pain (not unbearable but

> > noticeable).ÊÊ Just be SURE the drs. give him a sedative and a slight

> > pain reliever (many people like versed).Ê I've had one with and

> > without sedatives and definitely go with.Ê I stayed in bed / on the

> > couch the second day.Ê By the third day to about 7 days I was sore but

> > not overly uncomfortable.Ê Both times the drs. said not to do anything

> > strenuously (I play volleyball and they wouldn't allow it) because it

> > can tear where the needle went in.

> >

> > Overall, it isn't too bad.Ê It can be very frightening the first time

> > but I would go again if I new it would provide beneficial info.

> >

> > Take good care of your son and yourself.Ê If I can answer any specific

> > questions, let me know.

> >

> > LJ

> >

> I am glad to hear your message LJ, as I did not want to say anything

> negative, but was begining to think I was a wimp. I found the biopsies

> to be very painful. I spent two days in hosptial, 3rd day on couch/bed

> and site was tender for weeks after! First time I had it done had

> nothing at all, second had novacaine at location. I didn't really think

> it helped a whole lot. Next time I will be sedated!

>

> The ERCP on the other hand were a piece of cake, I went to sleep being

> wheeled into room, woke up about 8 rs later! That's the kind of tests I

> like!

>

> , PSC

> Waiting

>

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,

My husband is waiting to have an ERCP, I will be happy to tell him you

didn't mind it as he is very nervous. Also, how long have you had this

disease? Do you have colitis? What medication are you on and are there

any side effects? Will you need a liver transplant? Thank you in

advance for answering.

Patti

May 16, 1999

Guys,

All but one of the biopsies I had, were after my transplant. I was wondering?

Does anybody know? Is there a differene in our experience - regarding pain after

a biopsy, because a " new " liver responds differently? Or could it be the

doctors' technique?

, what is an ERCP, I've seen it mentioned here before, but I don't have a

clue.

P.S. Thanks for the explanation of PSC a while back, I'm learing so much from

the group.

---

Barbara Ann

AIH transplant recipient

On Sun, 16 May 1999 09:55:04 Patti McCormick wrote:

>From: Patti McCormick <pmic@...>

>

> wrote:

>>

>> From: <lparker@...>

>>

>> Kirk & Lori wrote:

>> >

>> > Barb,

>> > Good for you for being proactive.J I have had two biopsy's. I was in

>> > and out of the hospital in 8 hours but I think it is wise to keep a 7

>> > yr old in over night.J My experience has been pain (not unbearable but

>> > noticeable).JJ Just be SURE the drs. give him a sedative and a slight

>> > pain reliever (many people like versed).J I've had one with and

>> > without sedatives and definitely go with.J I stayed in bed / on the

>> > couch the second day.J By the third day to about 7 days I was sore but

>> > not overly uncomfortable.J Both times the drs. said not to do anything

>> > strenuously (I play volleyball and they wouldn't allow it) because it

>> > can tear where the needle went in.

>> >

>> > Overall, it isn't too bad.J It can be very frightening the first time

>> > but I would go again if I new it would provide beneficial info.

>> >

>> > Take good care of your son and yourself.J If I can answer any specific

>> > questions, let me know.

>> >

>> > LJ

>> >

>> I am glad to hear your message LJ, as I did not want to say anything

>> negative, but was begining to think I was a wimp. I found the biopsies

>> to be very painful. I spent two days in hosptial, 3rd day on couch/bed

>> and site was tender for weeks after! First time I had it done had

>> nothing at all, second had novacaine at location. I didn't really think

>> it helped a whole lot. Next time I will be sedated!

>>

>> The ERCP on the other hand were a piece of cake, I went to sleep being

>> wheeled into room, woke up about 8 rs later! That's the kind of tests I

>> like!

>>

>> , PSC

>> Waiting

>>

>> ------------------------------------------------------------------------

>> ONElist members are using Shared Files in great ways!

>>

>> Are you? If not, see our homepage for details.

>> ------------------------------------------------------------------------

>> Please support the American Liver Foundation!

>>

>> 1.) To subscribe send e-mail to -subscribeonelist

>> 2.) To UNsubscribe send to -unsubscribeonelist

>> 3.) Digest e-mail format send to -digestonelist

>> 4.) Normal e-mail format send to -normalonelist

>,

>My husband is waiting to have an ERCP, I will be happy to tell him you

>didn't mind it as he is very nervous. Also, how long have you had this

>disease? Do you have colitis? What medication are you on and are there

>any side effects? Will you need a liver transplant? Thank you in

>advance for answering.

>

>Patti

>

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May 17, 1999

Barbara Ann,

My biopsy was no problem, and I had no transplant. FYI!

Tami (AIH) chollyfam@...

June 22, 1999

Ooooops, I guess if i left my enzymes like they are

(88) for too long I guess its possible i too could end

up with fibrosis in the same time (2 years)

you said that your enzymes were slightly elevated for

about 2 years, Were you taking prednisone during those

2 years?

Elena

--- CREE8V1@... wrote:

> From: CREE8V1@...

>

> Elena,

>

> My biopsy after an estimated two years of only

> slightly elevated enzymes was

> ranked grade 3 with fibrosis and bridging necrosis

> (a sophisticated term for

> cell death).

>

> Roxanne

>

> ---------------------------

August 21, 1999

I had my first biopsy on 5-15-98, and it come out as " Minimal effects "

Meaning that my condition had not changed much and that no fibrosis

had occured. I have elevated liver enzimes (the initial clue that I had Hep

C).

At the time I found out I had it, I was under a lot of stress and I was also

passing kidney stones (Ouch!) and had one 4mm lodged next to my left

kidney. Needless to say, They went in after it.

Hep C , for me , makes me feel tired alot, sore at times, and generally easy

to fatigue. That is something I have never before felt, and as active as I am,

is hard for me to accept. This disease makes you feel helpless (as you all

know) and to be a man and the bread winner of the family can have adverse

effects on the mind. Because you can't do all the things you could do before

Hep C. You just stay tired a lot. A lot of times I feel flue like.

My Doctor is P. in Nashville Tn. @ Baptist hospital.

He is one of the foremost Hep Dr's. in the country. He has me on no other

medication at this time. I , however , am doing everything I can do to

minimize

the effects and damage caused by this disease. Like, drinking lots of water

and juice everyday , eating good foods (No Junk) , Suppliments (Vitamins and

such) and Herbs that support and re-vitalize the liver. I think everything

one

can do to counteract the effects is worth while because it WILL help

minimize the effects and prolong any negative results. I know that many have

more advanced cases , but still you can't give up the fight.

My wife has had two (2) major cancer surgeries in the past 18 months.

(colon and breast) we've been through a lot, but we're still fighting.

And winning. May God bless us all in this fight .

Sincerely,

August 21, 1999

=================================================>

> Carolee: Do you mean your husband dreads the procedure itself? The liver

> biopsy procedure for my husband was not a big deal. I suppose it has a

lot

> to do with the person who's doing it. What he did not like was laying

> perfectly still afterwards for hours!

=========================>

Some people say it is painful, others don't. My husband is waiting to have

one done toohe is to see the doctor on Monday to find out when...He has had

kidney biopsies, so I guess it will be alot like that....he had to lay still

for 4 hours then...and said it was a bit painful....only time will tell.

pauline.

August 21, 1999

Hi and welcome,

I feel much like you. No major symptoms, just fatigued easily and joint pains

(knees). I am taking herbal supplements and watching my diet carefully.

Haven't had a liver biopsy yet, but what little bloodwork I have had has all

been normal (I was just diagnoised about 2 months ago). Waitng on the results

of PCR. My dr. said if my biopsy showed no damage as of yet, he didn't see

any reason for me to start the treatments. Won't take much to talk me out of

that! HA! I'll just wait and see. He did say there are more promising

treatments which should be available in the next few years with far fewer

side effects. Most of this is still so new to me. It's hard to know what the

right thing to do is sometimes. Well, anyhow, welcome. Sandy

August 21, 1999

Sandy and others on the list...

MY dr said I just needed to eat healthy, stay away from alcohol or other

chemicals that are matabolized

the liver. My cholesteroal is a little as is my blood pressure ( 119 over

90...yesterday). Dr. says we'll just keep checking me over regularly and

maybe I can wait till there are some more friendly treatments.

I have to work tomorrow, so I am signing off.

positive dreams

August 22, 1999

,

That is great news. Your counts must be good enough that your dr. doesn't

think anything drastic has be done immediately. My dr. also feels some better

treatments will come around before long. Although it is impossible to say

anything good about this virus, at least it is usually slow to progress which

gives us time to consider our options. I will get my PCR results this week

then probably get scheduled for a liver biopsy. Not sure how to feel about

that. Any thoughts from cyberworld?? Sandy

August 22, 1999

Sandy..

I am ultra new to this list. It doesn't seem to be very active. Did I

just get to it in a lull or is this always the case???!!

I noticed " PCR " in your post to . Could you please explain to me

what this is?? Thanks...

Merril

August 23, 1999

Hi Merrill,

Yes, the group has been in a lull for a few weeks now. Not sure why. I have

been on it for several months now and until recently it has been extremely

active. Wait and see.

A PCR is a test that actually measures the amount of the virus in your system

whereas the test to determine if you have C only measures whether or not you

test positive to the Hep C antibodies. You could test positive for the

antibodies and actually have cleared the virus, that is the case for about

15% of those who test positive. So if you have tested positive, you might

want to ask that a PCR be done to see if you have the virus and how much of

it is in your system. I tested positive and then had some blood test done

that measure liver enzymes and liver functions. If you test high, then the

disease is actively attacking the liver. Luckily, my enzymes and liver

functions were all in normal range. Still waiting on the PCR test. My dr says

if I am detectable (if the PCR does detect the virus in my system), then I

will do a liver biopsy to see if and how much damage I have to my liver. If I

have damage, then he recommends I go on the combo treatments. Are you

familiar with this treatment? Let me know. Bye for now. Sandy

September 25, 1999

Dear :

My hepatologist told me that the best way to check the liver was via a biopsy

done with laparoscopy. He told me that they could better assess the damage

that way because they could see it as well as biopsy the worst parts.

Kathy (AIH)

Seattle area

September 26, 1999

I had laparoscopy biopsy - no overnight stay. Was home in about 4 hours or

so.

J

>From: 55mia@...

>Reply- onelist

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>Subject: Re: [ ] Re: Biopsy

>Date: Sun, 26 Sep 1999 18:05:45 EDT

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>From: 55mia@...

>

>From Kathy (Seattle area)

>

>My hepatologist told me that the best way to check the liver was via a

>biopsy

>done with laparoscopy. He told me that they could better assess the damage

>that way because they could see it as well as biopsy the worst parts.

>

>*********

>

>Very interesting!! I have heard that that requires an overnight stay. I

>guess they would have to have a good reason or the " insurance companies "

>won't like it. Ooohh, I get so mad. Some days I feel like I have an

>accountant treating me instead of the medical community. Okay, I'll get

>off

>my soapbox now. Hope I don't break a leg jumping off.

>

>Warmly,

>

>>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

September 26, 1999

From Kathy (Seattle area)

My hepatologist told me that the best way to check the liver was via a biopsy

done with laparoscopy. He told me that they could better assess the damage

that way because they could see it as well as biopsy the worst parts.

*********

Very interesting!! I have heard that that requires an overnight stay. I

guess they would have to have a good reason or the " insurance companies "

won't like it. Ooohh, I get so mad. Some days I feel like I have an

accountant treating me instead of the medical community. Okay, I'll get off

my soapbox now. Hope I don't break a leg jumping off.

Warmly,

October 7, 1999

Hi ,

The word " biopsy " hasn't entered it's ugly head into my medical scenario

yet, though recently my new Internist asked if I'd been scheduled for a

second one. At some point from some source, I read or heard that it might

be expected that a second biopsy will be ordered after two years of

treatment. I don't really remember the details, but I've been anxiously

watching that 2 year mark since I was diagnosed positively in January 1998.

However, though I'm supposedly in remission, my treatment has never been

discontinued and never will be. On the plus side, my labs have been

consistently benign for months. However, the insomnia that plagued me when

I was first sick seems to be trying to return. Also, I'm noticing a recent

discoloration of my urine. Since I have a history of blood in my urine (no

one has ever been able to figure out why) that could be what's causing it.

Tomorrow I'm having some fasting labs done to check for diabetes and I'll

ask them to also let me leave a urine sample, just in case something is

going on. I don't see the doctor tomorrow, just his nurse who will draw

the blood.

In a way, it's like living under a big, ugly cloud. I have a great

umbrella but I never can be sure that it won't get blown away without

warning. I guess that's what bothers all of us. We just don't know what

to expect and neither does anyone else. Not even our doctors.

Take care,

Geri

October 8, 1999

Hi Everyone

In november I am having the second biopsy, it will be three + years.

the main purpose is that we see how much the disease has progressed, and

how long estimated time before liver failure.

I've been told even though I've been in remission (test normal) it does

not mean there is not still damage happening to the liver.

Mt two cents, oh and I requested it, i was curious now I don't want to

no.

January 14, 2000

I am scheduled for a biopsy on Feb. 1, and as far I know the doctor

said he will numb my side with a local and I will be very wide awake. No

sedative..... no nothing! .... YIKES!! .... LOL I'll be all right and

so will you.

Leah

Biopsy

>From: " " <suejacks@...>

>

>Hello Everyone,

>

>I am curious to know if any one has had a transjugular biopsy and if you

>could give me some insight as to what to expect. How long does it take,

>awake or asleep, sedation or heaven forbid, none?

>

>Thanks,

>Sue

>

>---------------------------

January 14, 2000

I am scheduled for a biopsy on Feb. 1, and as far I know the doctor

said he will numb my side with a local and I will be very wide awake. No

sedative..... no nothing! .... YIKES!! .... LOL I'll be all right and

so will you.

Leah

Biopsy

>From: " " <suejacks@...>

>

>Hello Everyone,

>

>I am curious to know if any one has had a transjugular biopsy and if you

>could give me some insight as to what to expect. How long does it take,

>awake or asleep, sedation or heaven forbid, none?

>

>Thanks,

>Sue

>

>---------------------------

January 14, 2000

Leah,

Ask for a mild sedative or pain killer before they do the biopsy. I, along

with alot of other people, experienced right shoulder pain after the needle

was removed. The biopsy itself only took 5 minutes or less. The reason you're

awake when it's performed is because you have to hold your breath when they

take the microscopic piece of liver.

Love,

Bren

April 14, 2000

Doctor,

I am thankful to your advise. Is that PEG.IFN would be

better than IFN combo as available now.I am only hoping

to reduce the side effects as adopting a better treatment.

My expection of the new medicine to reach here

may be by end of this year and I wanted to have the biopsy

test done by knowing this.

As the HCV is a slow progressive disease I was of the assumption to have

the biopsy done after the medicine confirmation.

Please advise.- Regards - Gyani.

---

Subject: Re: What's high viral count?

Date: Fri, 14 Apr 2000 20:19:10 +0530

I think it is wiser to have a liver biopsy and then decide if she needs

treatment.

April 14, 2000

Doctor,

I am thankful to your advise. Is that PEG.IFN would be

better than IFN combo as available now.I am only hoping

to reduce the side effects as adopting a better treatment.

My expection of the new medicine to reach here

may be by end of this year and I wanted to have the biopsy

test done by knowing this.

As the HCV is a slow progressive disease I was of the assumption to have

the biopsy done after the medicine confirmation.

Please advise.- Regards - Gyani.

---

Subject: Re: What's high viral count?

Date: Fri, 14 Apr 2000 20:19:10 +0530

I think it is wiser to have a liver biopsy and then decide if she needs

treatment.

April 14, 2000

Peg.IFN may yet be a long way off, so have the biopsy now, then one can

decide regarding treatment.

Dr SCM

Re: What's high viral count?

> Date: Fri, 14 Apr 2000 20:19:10 +0530

>

> I think it is wiser to have a liver biopsy and then decide if she

needs

> treatment.

>

April 14, 2000

Peg.IFN may yet be a long way off, so have the biopsy now, then one can

decide regarding treatment.

Dr SCM

Re: What's high viral count?

> Date: Fri, 14 Apr 2000 20:19:10 +0530

>

> I think it is wiser to have a liver biopsy and then decide if she

needs

> treatment.

>

April 25, 2000

Dear Claudine:

I agree that a biopsy should be everyone's own choice. But, to take

some of what you mentioned, and twist it a little, if you are 1b, what

difference does it make how much, if any, liver damage is done? Whether

you have 10% left, or 10% destroyed, should not play on whether to

treat. That 10% could quickly accelerate, especially since we have no

idea what turns the virus on and off.

There is also the issue that many GIs will not treat a patient if

they are below a stage. But, if you treat early, you may avoid liver

damage, or minimize it. While it is true that you could build a quasi

species if you take the treatment and it does not work, there is nothing

to say that a quasi species will not mutate by itself, with or without

therapy.

Also, like the rebetron combo, there is nothing to say that someone

will respond to the Peg either. If you fail both treatments, and more

quasi species develop, your only hope at that point is that the virus

will turn itself off.

Like any chronic, and potentially lethal disease, you are owed

whatever therapy might work. You make the final decision! But, if you

have 50% of your liver destroyed, and the statistics on use of the

current therapies are known, shouldn't you be offered the option of

therapy?

If you refuse therapy or decide to wait, is always up to that

individual. But, since there is nothing to say whether you will be the

person that current treatment works on, no matter how small, what

difference does it make on how much liver damage there is, or is not. If

I tell you, you only have 20% of useful liver tissue left, and the

alternative is to try something; wait; or just hope, with the

alternative being you become so bad, if you can afford and are eligible

for a transplant, you might live, should you take take the risk of a

liver becoming available, or, try to stop the progression of the disease

into what you still have left?

In either case you may lose, or you may come out ahead. But, until

you have exhausted all possible treatments, you may not even make it to

the transplant list. Remember, only about 1 in 10 actually get a

transplant, and the rest leave us. If I have 1 or 90% of my liver

functioning, I would much rather give it a try to stop the virus, then

just sit and wait until something better comes along, if ever.

I realize that this is a depressing topic, but, none the less, it is

a fact. None of us knows what will happen tomorrow, or anything else.

While I might not personally go through some of mutilation that has been

seen in cancer treatment, at least I might give it a try. If you

respond, then the right decision was made. If you do not, did it buy

extra time? qualify you for some research protocol?, or maybe the cure

for you!

To be a " devil's advocate " , you only have one liver, and, if the virus

is going to destroy it, you elect whatever direction to take. The

biopsy, almost like the genotype, is a research tool. It is not

supposed, at least in the US, to be used as a criteria for a provider to

offer, or hold therapy. Only the viral count is important.

Even if your liver function tests are normal, if your viral count is

elevating, at some point liver destruction is a given, if it is not

stopped, and therefore probable death. So why add another criteria, that

is not accepted as a basis for therapy or holding, to the problems

already present.

Every person should have the most information to make an informative

decision. But, that information should be based on as much fact as we

know it. Without therapy, the virus will probably do destruction, and

can lead to death. With therapy, the same thing MAY happen, but it is

not as certain. Who wants to become the guinea pig and try nothing, or

something, both are unknowns. But, if you are part of the responders,

then you give whatever portion of your liver the ability to regenerate,

or the amount that is still functioning properly, the ability to take

over what has been destroyed.

Yes, you can die from the treatment making things worse, or get hit

by a plane falling out of the sky. If you do nothing and wait, then you,

again, may be allowing the virus that much more time to possibly cause

damage. The biopsy may give you information, but, it is NOT, information

that is supposed to be used by a provider to recommend therapy, or

holding.

It is similar to what our government did to the Blacks in the

Carolinas with syphilis. Treatment was available, but, by using the

color of someone's skin, it was withheld from many, and many progressed

to death. If they were told, when they were severely infected that

something may work to cure them, or at least may help them, but, may not

cure them, wasn't it owed? For some it may have been too late, but for

others it would have cured them. But, it was withheld, and most died a

horrible death. This was all based on an arbitrary decision, by someone

outside the stricken community. If they had suffered some brain damage,

but, still had a chance of being cured, or being stabilized, what would

each have done?

I would guess we could probably predict their decisions. Some would

have died anyway, but, if you were one of the responders, what decision

then? A treatment was consistently withheld based on one criteria. That

should not be allowed ever again, and by throwing in variables that do

not effect whether treatment is offered, isn't this the same principal?

Every day that goes by is one step closer to beating this. But, how

many steps are needed is an unknown. Should someone with diabetes, or a

heart condition be led to believe that just because they do not have a

" perfect " body, they are not entitled to the therapy available?

I know some of this is extreme, but, some of the facts are the same.

Knowing if, and how much liver damage you may or may not have, is not a

criteria for current therapy. Maybe in 10 years it will help to offer

better statistics, but, every person should not be looked at as just a

potential statistic. That is all the biopsy information actually offers

us today. It is not a predictor or success or failure, and until it has

been proven to definitely state it will hasten therapy, or interfere

with it, it should not be a basis for deciding, or electing what is

available at the moment.

This is just my opinion, and I am not saying I am right or wrong. It

is this unknown that I am concerned is being used to sway people towards

or away from therapy. Marty

April 25, 2000