Re: Geri/AIH discovery/welcome

[Guest guest]

Hi Tammy,

It took awhile to get my medical care organized. I naively thought that " a

doctor is a doctor " and they wouldn't hang out a shingle if they didn't

know what they are doing. When you've never been really ill, you don't

realize how important it is to locate a specialist with an inquiring mind

and strong knowledge in her or his field.

One of the shocks I had in LV is that when I finally located Board

certified specialists, I'd be shuffled off to their Nurse Practitioner.

Nothing wrong with that, but on a first appointment, I'd like the doctor to

at least introduce her or himself. Because of the edema and an irregular

heartbeat, I located a cardiologist (pre AIH diagnosis). The person who

saw me didn't tell me he wasn't a doctor nor did he mention it the second

time I came in. I never did see the doctor I paid to see. Fortunately,

comprehensive tests were ordered, an irregularities were found, and I was

referred to a GI specialist. By then I was so angry at being, I thought,

deceived, I didn't see the person I was referred to. Instead, I located

another GI doctor through the AMA web pages. Again, I wasn't seen by the

doctor I made the appointment to see.

The new doctor ordered a liver profile (that was good) but it turned out

that he didn't know what to do with the results, so he did nothing. For

two weeks I couldn't reach him, he didn't return calls, and I was getting

very sick. In desperation, I chose a woman internist at random because I

saw an ad for a new clinic in an " exclusive " area. I figured that good

doctors will often be found where the money is. My instincts weren't that

far off. She knew nothing about AIH but she knew that something was

seriously wrong. She hospitalized me the same day she saw me for the first

time, after she had the various labs fax her the results of my tests (LFT,

ultrasound, CT scan.) By then, my gallbladder and bile ducts had stopped

functioning. She called in some FINE specialists - several of them. I had

a liver biopsy and other tests, including tests to be sure that the

extraordinary amount of fluid in my abdomen wasn't toxic.

The GI specialist she called in was very good but didn't pretend to know

anything about AIH. Originally he thought I had PBC but he wasn't

reluctant to tell me that he wasn't sure and he arranged for me to see the

Hepatologist from San Francisco as soon as he came to LV, several weeks

later. He was clearly upset because he didn't know what meds to give me and

he knew I should be taking something, so he relied on maintenance drugs

like lasix and Pepcid and anything else he was sure wouldn't cause more

harm. The only reason I changed doctors after that was because of my

insurance coverage (a PPO). I think that Scripps was the best choice for

me and I can't think of any aspect of my health they haven't checked and

addressed. The fact that I'm in remission is testimony to how

comprehensive their care has been.

Sorry to make this so long, but so many of us talk about our negative

experiences with our doctors and I can see how we can get locked into

seeing the wrong doctor who may have too much ego to admit that they simply

don't know what they're doing. In my opinion, the mark of excellence in a

physician is the ability to admit that they don't know everything about

everything and the willingness to refer to someone who does. During the

past year several doctors have commented to me about the first principle in

medicine, (sic) " Do no harm " . If only we could count on that as the credo

of every doctor we see!

I'm doing very well now. I'm in remission, trying to find out if I can

successfully wean off of Prednisone. My Hepatologists don't like the drug

and prefer that I not take it if I can get along without it. I understand

that a relapse is possible anywhere from weeks to months after stopping

prednisone so my fingers are crossed that it won't happen to me. Meantime,

I'm still on the transplant list, so if all else fails, at least I know

there's a possibility for that alternative.

Take care,

Geri

[Guest guest]

dear geri,

i agree with you about the doctors. i went in for a yearly physical,

and had a blood test done for the first time in about 10 years. the

receptionist told me i had to come in to see the doctor because i had a

bladder infection. when i got there, the doctor told me my liver enzymes

were high, and that i did not have a bladder infection. the doctor

proceeded to take blood every two weeks for about a month and a half, while

my levels rose. she had no idea what was going on and said to me: " well,

you've had time to think about this..how do you think you got it? " . this,

even without a diagnosis. finally, i had to fight the doctor and

receptionist for a referral. they didn't try very hard to get me an

appointment, and made me feel as if i was wasting everyone's time. suffice

to say, i was surprised when the specialist diagnosed me. the whole medical

process is very slow. i had a biopsy done last week and will find out on

tuesday exactly where i stand. i have no idea how long i've had this, but

my symptoms aren't too bad (just a little tired, a few dizzy spells etc.).

my alt levels are up around 400, and ast 300. is that bad? anyways, it's

funny how you're brought up to think doctors have all the answers. i'm

realizing now how important it is to fight for your own rights, and for your

own body.

emily

>From: Geri Spang <spangs@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Geri/AIH discovery/welcome

>Date: Fri, 07 May 1999 20:05:57 -0700

>

>From: Geri Spang <spangs@...>

>

>Hi Tammy,

>It took awhile to get my medical care organized. I naively thought that " a

>doctor is a doctor " and they wouldn't hang out a shingle if they didn't

>know what they are doing. When you've never been really ill, you don't

>realize how important it is to locate a specialist with an inquiring mind

>and strong knowledge in her or his field.

>

>One of the shocks I had in LV is that when I finally located Board

>certified specialists, I'd be shuffled off to their Nurse Practitioner.

>Nothing wrong with that, but on a first appointment, I'd like the doctor to

>at least introduce her or himself. Because of the edema and an irregular

>heartbeat, I located a cardiologist (pre AIH diagnosis). The person who

>saw me didn't tell me he wasn't a doctor nor did he mention it the second

>time I came in. I never did see the doctor I paid to see. Fortunately,

>comprehensive tests were ordered, an irregularities were found, and I was

>referred to a GI specialist. By then I was so angry at being, I thought,

>deceived, I didn't see the person I was referred to. Instead, I located

>another GI doctor through the AMA web pages. Again, I wasn't seen by the

>doctor I made the appointment to see.

>

>The new doctor ordered a liver profile (that was good) but it turned out

>that he didn't know what to do with the results, so he did nothing. For

>two weeks I couldn't reach him, he didn't return calls, and I was getting

>very sick. In desperation, I chose a woman internist at random because I

>saw an ad for a new clinic in an " exclusive " area. I figured that good

>doctors will often be found where the money is. My instincts weren't that

>far off. She knew nothing about AIH but she knew that something was

>seriously wrong. She hospitalized me the same day she saw me for the first

>time, after she had the various labs fax her the results of my tests (LFT,

>ultrasound, CT scan.) By then, my gallbladder and bile ducts had stopped

>functioning. She called in some FINE specialists - several of them. I had

>a liver biopsy and other tests, including tests to be sure that the

>extraordinary amount of fluid in my abdomen wasn't toxic.

>

>The GI specialist she called in was very good but didn't pretend to know

>anything about AIH. Originally he thought I had PBC but he wasn't

>reluctant to tell me that he wasn't sure and he arranged for me to see the

>Hepatologist from San Francisco as soon as he came to LV, several weeks

>later. He was clearly upset because he didn't know what meds to give me and

>he knew I should be taking something, so he relied on maintenance drugs

>like lasix and Pepcid and anything else he was sure wouldn't cause more

>harm. The only reason I changed doctors after that was because of my

>insurance coverage (a PPO). I think that Scripps was the best choice for

>me and I can't think of any aspect of my health they haven't checked and

>addressed. The fact that I'm in remission is testimony to how

>comprehensive their care has been.

>

>Sorry to make this so long, but so many of us talk about our negative

>experiences with our doctors and I can see how we can get locked into

>seeing the wrong doctor who may have too much ego to admit that they simply

>don't know what they're doing. In my opinion, the mark of excellence in a

>physician is the ability to admit that they don't know everything about

>everything and the willingness to refer to someone who does. During the

>past year several doctors have commented to me about the first principle in

>medicine, (sic) " Do no harm " . If only we could count on that as the credo

>of every doctor we see!

>

>I'm doing very well now. I'm in remission, trying to find out if I can

>successfully wean off of Prednisone. My Hepatologists don't like the drug

>and prefer that I not take it if I can get along without it. I understand

>that a relapse is possible anywhere from weeks to months after stopping

>prednisone so my fingers are crossed that it won't happen to me. Meantime,

>I'm still on the transplant list, so if all else fails, at least I know

>there's a possibility for that alternative.

>

>Take care,

>Geri

>

>

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[Guest guest]

tami,

thank you for your support on my test results! i love this group!

emily

>From: Chollyfam@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Geri/AIH discovery/welcome

>Date: Sat, 8 May 1999 18:58:22 EDT

>

>From: Chollyfam@...

>

>

>

>Best of luck to you on your test results. We will all hope for the best!

>

>Tami

>

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[Guest guest]

Best of luck to you on your test results. We will all hope for the best!

Tami

[Guest guest]

,

Fortunately, some doctors are very caring but it's not always easy to find

those who are and another problem is finding a doctor who will admit that

he or she isn't sure what is wrong. The problem is, while they're working

their personal limitations out, the patient can be getting more and more

sick and things could progress to the point where there's no turning back.

I've seen that happen one time too often (to my Mom).

I don't know much about ALT and AST levels because apparently different

labs use different values. The lab that usually does mine shows " normal "

ranges at 3-45 and when I was at my worst, ALT was 192 and AST was 356. I

found the following information in some of the files I've saved. It's not

very helpful because it at least gives some clues about what the tests mean:

ALT a.k.a. SGPT/AST a.k.a. SGOT

These tests are rough indicators of the extent of inflammation of the liver

cells. In acute hepatitis they can be up to the thousands. Chronic

hepatitis range from normal to a few hundred.

ALT is an enzyme produced in hepatocytes, the major cell type in the liver.

ALT is often inaccurately referred to as a liver function test, however,

its level in the blood tells little about the function of the liver. The

level of ALT in the blood (actually enzyme activity is measured in the

clinical laboratory) is increased in conditions in which hepatocytes are

damaged or die. As cells are damaged, ALT leaks out into the bloodstream.

All types of hepatitis (viral, alcoholic, drug-induced, etc.) cause

hepatocyte damage that can lead to elevations in the serum ALT activity.

The ALT level is also increased in cases of liver cell death resulting from

other causes, such as shock or drug toxicity. The level of ALT may

correlate roughly with the degree of cell death or inflammation, however,

this is not always the case. An accurate estimate of inflammatory activity

or the amount cell death can only be made by liverbiopsy. (See also

aspartate aminotransferase below.)

Aspartate aminotransferase (AST)AST is an enzyme similar to ALT (see above)

but less specific for liver disease as it is also produced in muscle and

can be elevated in other conditions (for example, early in the course of a

heart attack). AST is also inaccurately referred to as a liver function

test by many physicians. In many cases of liver inflammation, the ALT and

AST activities are elevated roughly in a 1:1 ratio. In some conditions,

such as alcoholic hepatitis or shock liver, the elevation in the serum AST

level may be higher than the elevation in the serum ALT level.

I didn't really feel sick before I was diagnosed either. I didn't even

notice the fatigue, except that I had chronic insomnia which I later

learned can be a problem for people with AIH.

Yes, you do have to fight for yourself. In a perfect world we could put

all of our trust in our doctors but it's very wise to keep track as much as

possible of your own medical condition. Lots of truth to the saying that

" knowledge is power. "

Take care,

Geri

[Guest guest]

Geri,

Thanks for the information on the ALT/AST levels. I wish I had more to

offer all of you, since you're all being so helpful to me.

Thanks again,

>From: Geri Spang <spangs@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Geri/AIH discovery/welcome

>Date: Sat, 08 May 1999 23:01:19 -0700

>

>From: Geri Spang <spangs@...>

>

>,

>Fortunately, some doctors are very caring but it's not always easy to find

>those who are and another problem is finding a doctor who will admit that

>he or she isn't sure what is wrong. The problem is, while they're working

>their personal limitations out, the patient can be getting more and more

>sick and things could progress to the point where there's no turning back.

>I've seen that happen one time too often (to my Mom).

>

>I don't know much about ALT and AST levels because apparently different

>labs use different values. The lab that usually does mine shows " normal "

>ranges at 3-45 and when I was at my worst, ALT was 192 and AST was 356. I

>found the following information in some of the files I've saved. It's not

>very helpful because it at least gives some clues about what the tests

>mean:

>

>ALT a.k.a. SGPT/AST a.k.a. SGOT

>These tests are rough indicators of the extent of inflammation of the liver

>cells. In acute hepatitis they can be up to the thousands. Chronic

>hepatitis range from normal to a few hundred.

>

>ALT is an enzyme produced in hepatocytes, the major cell type in the liver.

> ALT is often inaccurately referred to as a liver function test, however,

>its level in the blood tells little about the function of the liver. The

>level of ALT in the blood (actually enzyme activity is measured in the

>clinical laboratory) is increased in conditions in which hepatocytes are

>damaged or die. As cells are damaged, ALT leaks out into the bloodstream.

>All types of hepatitis (viral, alcoholic, drug-induced, etc.) cause

>hepatocyte damage that can lead to elevations in the serum ALT activity.

>The ALT level is also increased in cases of liver cell death resulting from

>other causes, such as shock or drug toxicity. The level of ALT may

>correlate roughly with the degree of cell death or inflammation, however,

>this is not always the case. An accurate estimate of inflammatory activity

>or the amount cell death can only be made by liverbiopsy. (See also

>aspartate aminotransferase below.)

>

>Aspartate aminotransferase (AST)AST is an enzyme similar to ALT (see above)

>but less specific for liver disease as it is also produced in muscle and

>can be elevated in other conditions (for example, early in the course of a

>heart attack). AST is also inaccurately referred to as a liver function

>test by many physicians. In many cases of liver inflammation, the ALT and

>AST activities are elevated roughly in a 1:1 ratio. In some conditions,

>such as alcoholic hepatitis or shock liver, the elevation in the serum AST

>level may be higher than the elevation in the serum ALT level.

>

>I didn't really feel sick before I was diagnosed either. I didn't even

>notice the fatigue, except that I had chronic insomnia which I later

>learned can be a problem for people with AIH.

>

>Yes, you do have to fight for yourself. In a perfect world we could put

>all of our trust in our doctors but it's very wise to keep track as much as

>possible of your own medical condition. Lots of truth to the saying that

> " knowledge is power. "

>

>Take care,

>Geri

>

>

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

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>

>Set up your Star Wars list at ONElist.

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>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

[Guest guest]

,

We're all giving something very important to each other here. Every little

piece of information adds to our knowledge about what is going on with us

and the more knowledge we have, the less fear of the unknown. I think that

fear is one of the worst aspects of having a chronic, potentially dangerous

disease like AIH.

Take care,

Geri

At 01:52 PM 05/09/99 PDT, you wrote:

>From: " emily simpson " <esimpson7@...>

>

>Geri,

>Thanks for the information on the ALT/AST levels. I wish I had more to

>offer all of you, since you're all being so helpful to me.

>Thanks again,

>

>