Re: How experienced is you GI specialist in AIH?

[Guest guest]

Dear Carol:

I was my GI's first case of AIH too. He did go out of his way to try to

learn more about it, including going to several 'liver conferences'. He even

wrote to his teachers from medical school (who were well known Liver

specialist's) for their opinion on my case. He has since told me that he now

has 2 other's with AIH.

My biggest complaint about doctors is when they are rude to me or tell me

that things are in my head. Here are a couple of things that I have been

told over the years by different doctors and the subsequent diagnosis:

1. It's all in your head. (Endometriosis. Ended up requiring hysterectomy)

2. You need to go to church more. (colon obstruction)

3. You are manifesting symptoms out of depression. (high blood sugar)

4. You are imagining things. That's probably always been there and you never

noticed it before. (Strange spots all over my arms and back and torso)

5. Shut up! (trying to ask questions about abdominal pain)

6. Your choices are to either deal with the pain, or take pain pills.

(chronic left side pain, still no definite conclusion to cause, possibly

spleen or colon related)

7. This is the 4th time you've been here with dehydration. You're coming

here too often. (This was said to me by an ER doctor after I was given 2 bags

of fluid because I was so dehydrated from vomiting from the hepatitis. My GI

had instructed me to go to the ER when dehydrated in lieu of hospitalization).

8. You're depressed (blood clot)

9. Oops (wrong dosage of drug resulting in severe illness)

10. Are you going to sue me? (delaying prednisone treatment)

This is but a small example of some of the things that doctors have said to

me. It is usually only after there is proof of a problem that they

apologize, and it's rare to get an apology. Only 2 doctors have ever

apologized to me. Both of them almost killed me.

I don't know if there are other professionals in other fields that treat

people this way. Maybe they figure that since insurance companies pay for

most treatment, that they only have to answer to them and not to the

patients. It is a sad commentary on our lives that so many sick people are

subjected to humiliation and torment by the very people that they go to for

help.

Sorry to go on such a rant. I guess it is a sore point with me. I know that

there are plenty of compassionate doctors out there that look into things

that they don't know about, or who admit that they don't know and either try

to find out, or send you along. I have been unfortunate to have been

subjected to some of the worst of the lot.

Kathy (AIH)

Seattle area

[Guest guest]

Boy what an eye opener. I know my doctor at home didn't have a patient with

AIH until I came along. But he is not a specialist in this field. But he is

learning by reading and keep looking for answers when the question is

something he don't know and he will tell you that he doesn't know and will

find out and call you back.

SUE AIH

Wisconsin

[Guest guest]

Hi Carol,

You are absolutely right in your concern about finding the right doctor. I had

slightly elevated enzymes and no other symptoms whatsoever. I had been going to

a specialist (a local yokel) who told me to go and have a nice life. Eleven

weeks later I had a transplant. The only reason I'm alive is because I went to

Baylor University Medical Center.

There are a couple of ways to find a good, competent doctor. I have made the

suggestion before that if you go to a transplant center you will find doctors in

the hepatology department who have treated every type of liver disease.

Another way is to ask your GI doc if he has any patients who've had liver

transplants.

If they're competent enough to take care of transplant recipients, chances are,

they're pretty darn good.

The doctors at the transplant center are very picky and only recommend competent

doctors for the recipients to see when they return to their hometown.

I hope this helps.

---

Barbara Ann

AIH transplant recipient

On Fri, 28 May 1999 19:37:29 A wrote:

>From: A <3s@...>

>

>Some of the negative comments that have been posted about doctors got me

>concerned. Then Jos comment that her doctor had had only one

>other patient with AIH got me thinking. How many of us are seeing GI

>specialists who have few or no other AIH patients? I tried to make an

>estimate.

>

>In 1990, the population of the USA was 248,709,873. The rate of

>occurrence of AIH is 1 per 100,000 population, so one would expect 2487

>people had AIH in the USA in 1990. There were 7493 GI specialists in

>the USA in 1990. Therefore, there were three times as many GI

>specialists as people with AIH.

>

>My conclusion from this is unless you specifically asked for a GI

>specialist with experience in AIH, or are being treated by doctors in a

>teaching hospital, I fear that 65% of us are seeing a GI specialist who

>has no other patient with AIH.

>

>This is pretty scary. We cant afford to blindly trust our GI

>specialists. They know a lot about Hepatitis, but may not know a lot

>about AIH unless they, like Jos or my doctor, go out of their way

>to learn more about the disease. We need to educate ourselves for our

>own protection.

>

>Just food for thought that I wanted to share.

>

>Carol N.

>

>The sources for population data were:

>(http://pharminfo.com/pubs/msb/nih_GI_stats.html).

>(http://www.ask.com/main/FinalAnswer.asp?qCategory=EDU%5F & Link=http%3A%2F%2Fwww\

%2Ecensus%2Egov%2Fmain%2Fwww%2Fcen1990%2Ehtml & Title=Census+Data & Answers=1 & ajpara\

m_list1=0 & ajparam_fillers=%7C%3C611%3E%7C & ajparam_qid=2145 & site_name=Jeeves & scop\

e=web & ask=Where+can+I+find+U%2ES%2E+census+bureau+statistics+and+information+abo\

ut+1990+census%3F)

>

>

>

>

>

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[Guest guest]

Carol:

You are so correct about some GI's having little experience with AIH.

My gastroenterologist told me he had only treated one other person with AIH

when I was diagnosed in 1984. I live in a small community with no

hepatologists in the area. So I had to rely on my doctor to treat me to the

best of his ability, and I, too, was pretty ignorant about AIH. I think that

my doctor's lack of experience in treating this illness resulted in his

waiting

too long to suggest transplantation. This resulted in my having an extremely

difficult time with the surgery and recovery process since I was critically

ill when I did receive my transplant.

My advice to others with AIH who are not completely pleased with

their doctors is to immediately seek treatment elsewhere...with someone who

has more experience and knowledge treating the liver disease from which you

are suffering.

Just had to present my opinion.

Hope everyone has a great Memorial Day weekend.

Bonnie P.

AIH & post transplant

[Guest guest]

Carol,

Good statistical perspective. I've also been concerned about the number of

people who are being treated by GI doctors who very well may have no

understanding at all of autoimmune diseases, AIH, or proper use of

corticosteroids in treatment. I'm seeing two Hepatologists and I'm

relatively certain they understand AIH. Trouble is, they don't want to deal

with the other problems that go with AIH nor do they seem to want to

address the issues arising from taking these volatile drugs.

Geri

[Guest guest]

Hi Barbara Ann,

I don't know if this is too personal..What happened if you had no symptoms

and only slightly elevated enzymes? It's scary to think you can have no

warning signs before you need a transplant. Was your liver inflamed? In

hindsight, can you identify any warning signs? AIH is pretty confusing to

our poor bodies!!

>From: " barbara ann " <barbara-ann@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] How experienced is you GI specialist in AIH?

>Date: Fri, 28 May 1999 22:34:23 -0500

>

>From: " barbara ann " <barbara-ann@...>

>

>Hi Carol,

>You are absolutely right in your concern about finding the right doctor. I

>had slightly elevated enzymes and no other symptoms whatsoever. I had been

>going to a specialist (a local yokel) who told me to go and have a nice

>life. Eleven weeks later I had a transplant. The only reason I'm alive is

>because I went to Baylor University Medical Center.

>There are a couple of ways to find a good, competent doctor. I have made

>the suggestion before that if you go to a transplant center you will find

>doctors in the hepatology department who have treated every type of liver

>disease.

>Another way is to ask your GI doc if he has any patients who've had liver

>transplants.

>If they're competent enough to take care of transplant recipients, chances

>are, they're pretty darn good.

>The doctors at the transplant center are very picky and only recommend

>competent doctors for the recipients to see when they return to their

>hometown.

>I hope this helps.

>---

>Barbara Ann

>AIH transplant recipient

>

>On Fri, 28 May 1999 19:37:29 A wrote:

> >From: A <3s@...>

> >

> >Some of the negative comments that have been posted about doctors got me

> >concerned. Then Jos comment that her doctor had had only one

> >other patient with AIH got me thinking. How many of us are seeing GI

> >specialists who have few or no other AIH patients? I tried to make an

> >estimate.

> >

> >In 1990, the population of the USA was 248,709,873. The rate of

> >occurrence of AIH is 1 per 100,000 population, so one would expect 2487

> >people had AIH in the USA in 1990. There were 7493 GI specialists in

> >the USA in 1990. Therefore, there were three times as many GI

> >specialists as people with AIH.

> >

> >My conclusion from this is unless you specifically asked for a GI

> >specialist with experience in AIH, or are being treated by doctors in a

> >teaching hospital, I fear that 65% of us are seeing a GI specialist who

> >has no other patient with AIH.

> >

> >This is pretty scary. We cant afford to blindly trust our GI

> >specialists. They know a lot about Hepatitis, but may not know a lot

> >about AIH unless they, like Jos or my doctor, go out of their way

> >to learn more about the disease. We need to educate ourselves for our

> >own protection.

> >

> >Just food for thought that I wanted to share.

> >

> >Carol N.

> >

> >The sources for population data were:

> >(http://pharminfo.com/pubs/msb/nih_GI_stats.html).

>

>(http://www.ask.com/main/FinalAnswer.asp?qCategory=EDU%5F & Link=http%3A%2F%2Fwww\

%2Ecensus%2Egov%2Fmain%2Fwww%2Fcen1990%2Ehtml & Title=Census+Data & Answers=1 & ajpara\

m_list1=0 & ajparam_fillers=%7C%3C611%3E%7C & ajparam_qid=2145 & site_name=Jeeves & scop\

e=web & ask=Where+can+I+find+U%2ES%2E+census+bureau+statistics+and+information+abo\

ut+1990+census%3F)

> >

> >

> >

> >

> >

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

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> >

> >Tell other Star Wars fans at ONElist!

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> >

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>

>

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[Guest guest]

Carol,

What a great comment, we need to educate ourselves for out own protection.

I too have been lucky enough to have 2 doctors that go out of their way to

make sure all my questions are answered. When I first got sick I just did

as I was told and went along with everything. Not now. I spend hours

reading about what I can find about the disease. I ask any question that

comes into my mind that I think the doctors should have the answers for and

I have been lucky enough that if they don't know they will find out.

I had a period there for a while that I thought they were not doing

anything for me and told them I was going to go elsewhere. After long

discussions with them and other doctors I decided I had the best available

(that I know of). Originally my specialist consulted with a number of

professors and other specialists on my case and she still confers with

them, she says because she is open to any suggestions as to what the next

steps should be. So I decided that if she was in contact with all these

other doctors why should I try to see others, she is doing that for me. I

can only hope I did the right thing.

SueB.

----------

> From: A <3s@...>

> onelist

> Subject: [ ] How experienced is you GI specialist in AIH?

> Date: Saturday, 29 May 1999 12:37

>

> From: A <3s@...>

>

> Some of the negative comments that have been posted about doctors got me

> concerned. Then Jo’s comment that her doctor had had only one

> other patient with AIH got me thinking. How many of us are seeing GI

> specialists who have few or no other AIH patients? I tried to make an

> estimate.

>

> In 1990, the population of the USA was 248,709,873. The rate of

> occurrence of AIH is 1 per 100,000 population, so one would expect 2487

> people had AIH in the USA in 1990. There were 7493 GI specialists in

> the USA in 1990. Therefore, there were three times as many GI

> specialists as people with AIH.

>

> My conclusion from this is unless you specifically asked for a GI

> specialist with experience in AIH, or are being treated by doctors in a

> teaching hospital, I fear that 65% of us are seeing a GI specialist who

> has no other patient with AIH.

>

> This is pretty scary. We can’t afford to blindly trust our GI

> specialists. They know a lot about Hepatitis, but may not know a lot

> about AIH unless they, like Jo’s or my doctor, go out of their way

> to learn more about the disease. We need to educate ourselves for our

> own protection.

>

> Just food for thought that I wanted to share.

>

> Carol N.

>

> The sources for population data were:

> (http://pharminfo.com/pubs/msb/nih_GI_stats.html).

>

(http://www.ask.com/main/FinalAnswer.asp?qCategory=EDU%5F & Link=http%3A%2F%2F

www%2Ecensus%2Egov%2Fmain%2Fwww%2Fcen1990%2Ehtml & amp;Title=Census+Data & amp;A

nswers=1 & amp;ajparam_list1=0 & amp;ajparam_fillers=%7C%3C611%3E%7C & amp;ajparam

_qid=2145 & amp;site_name=Jeeves & amp;scope=web & amp;ask=Where+can+I+find+U%2ES%

2E+census+bureau+statistics+and+information+about+1990+census%3F)

>

>

>

>

>

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

> What was YOUR favorite part?!

>

> Tell other Star Wars fans at ONElist!

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

> 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]

I have heard a few nice ones from doctors too. For example when some

nurses were taking my blood, my doctor called out and said to them be

careful she has a disease. As if AIH is catching.

When I told my doc about the fatigue he suggested exercise. I would if

I could!

Oh well, I just have to laugh

Elena

--- KATBERCOO@... wrote:

> From: KATBERCOO@...

>

> Dear Carol:

>

> I was my GI's first case of AIH too. He did go out

> of his way to try to

> learn more about it, including going to several

> 'liver conferences'. He even

> wrote to his teachers from medical school (who were

> well known Liver

> specialist's) for their opinion on my case. He has

> since told me that he now

> has 2 other's with AIH.

>

> My biggest complaint about doctors is when they are

> rude to me or tell me

> that things are in my head. Here are a couple of

> things that I have been

> told over the years by different doctors and the

> subsequent diagnosis:

>

> 1. It's all in your head. (Endometriosis. Ended up

> requiring hysterectomy)

> 2. You need to go to church more. (colon

> obstruction)

> 3. You are manifesting symptoms out of depression.

> (high blood sugar)

> 4. You are imagining things. That's probably always

> been there and you never

> noticed it before. (Strange spots all over my arms

> and back and torso)

> 5. Shut up! (trying to ask questions about abdominal

> pain)

> 6. Your choices are to either deal with the pain, or

> take pain pills.

> (chronic left side pain, still no definite

> conclusion to cause, possibly

> spleen or colon related)

> 7. This is the 4th time you've been here with

> dehydration. You're coming

> here too often. (This was said to me by an ER doctor

> after I was given 2 bags

> of fluid because I was so dehydrated from vomiting

> from the hepatitis. My GI

> had instructed me to go to the ER when dehydrated in

> lieu of hospitalization).

> 8. You're depressed (blood clot)

> 9. Oops (wrong dosage of drug resulting in severe

> illness)

> 10. Are you going to sue me? (delaying prednisone

> treatment)

>

> This is but a small example of some of the things

> that doctors have said to

> me. It is usually only after there is proof of a

> problem that they

> apologize, and it's rare to get an apology. Only 2

> doctors have ever

> apologized to me. Both of them almost killed me.

>

> I don't know if there are other professionals in

> other fields that treat

> people this way. Maybe they figure that since

> insurance companies pay for

> most treatment, that they only have to answer to

> them and not to the

> patients. It is a sad commentary on our lives that

> so many sick people are

> subjected to humiliation and torment by the very

> people that they go to for

> help.

>

> Sorry to go on such a rant. I guess it is a sore

> point with me. I know that

> there are plenty of compassionate doctors out there

> that look into things

> that they don't know about, or who admit that they

> don't know and either try

> to find out, or send you along. I have been

> unfortunate to have been

> subjected to some of the worst of the lot.

>

> Kathy (AIH)

> Seattle area

>

>

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>

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===

Elena Pheasant

_________________________________________________________