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Tom,

You are right but between being constricted by medical insurance and costs

and plane fear or whatever, many of our people are being treated by doctors

that are not caring and knowledgeable, Jacquelyn is a prime example. I have

been nagging at her for months to get more opinions. Some people are too

kind for their own good and like in Jacquelyn's instance just to tired and

ill to do what is necessary to get the right help. This group is beneficial

in that respect because those not getting the right help are advised and

encouraged by the post tx patients, others that a very knowledgeable and

have had good experiences and even doctors like Aubrey.

Peg

Tom wrote:

> Reminds me of what a comedian once said: 50 percent of all doctors in

> this country graduated in the bottom half of their class.

>

> It's dangerous to paint with a broad brush, however. Like any

> profession, there are good practitioners and bad practitioners. None

> of us should feel that we are being held captive by a particular

> physician. We all can vote with our checkbooks and our feet.

>

> One thing I've learned in the short time I've known about PSC (dx

> October '99) is that it is a tricky condition to diagnose and to treat.

> One doctor may know a lot about it, while another may know very

> little. It's up to us to discern where our doctors' skill sets are and

> then go to where we will be treated by knowledgable, compassionate,

> caring doctors.

>

> Tom

>

> " edith pearson " wrote:

> original article:/group//?start=7167

> >

> >

> > For years after my husband was diagnosed with PSC we were told that

> all his

> > symptoms were in his head. A month before he received his transplant

> the

> > doctor told him to be a " man " - that there really wasn't much wrong

> with

> > him and that it would be years before he'd need a transplant. We

> were told

> > the itching was psychological, that the fatigue was because he was

> lazy

> > (which believe me he never was)and to smarten up and get on with

> life. When

> > we pointed out that liver functions were ever increasing we were told

> they

> > meant nothing that they would go a lot higher before there would be

> any

> > physical problems. Our liver specialist moved away and never

> bothered

> > telling his patients that he was going. If I sound a little bitter

> believe

> > me I am. When you see the difference the transplant made you start

> to

> > understand that it was the doctor who had a psychological problem -

> some of

> > them sure don't know what they are talking about and won't refer you

> to

> > someone who can help you. Dave spent too much time feeling guilty

> about not

> > feeling well and getting no satisfaction from the medical profession.

> >

> > If you have a definite diagnoses of PSC and you don't always feel

> well

>

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

> Was the salesman clueless? Productopia has the answers.

> http://clickhere./click/1702

>

> -- Easily schedule meetings and events using the group calendar!

> -- /cal?listname= & m=1

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Tom,

You are right but between being constricted by medical insurance and costs

and plane fear or whatever, many of our people are being treated by doctors

that are not caring and knowledgeable, Jacquelyn is a prime example. I have

been nagging at her for months to get more opinions. Some people are too

kind for their own good and like in Jacquelyn's instance just to tired and

ill to do what is necessary to get the right help. This group is beneficial

in that respect because those not getting the right help are advised and

encouraged by the post tx patients, others that a very knowledgeable and

have had good experiences and even doctors like Aubrey.

Peg

Tom wrote:

> Reminds me of what a comedian once said: 50 percent of all doctors in

> this country graduated in the bottom half of their class.

>

> It's dangerous to paint with a broad brush, however. Like any

> profession, there are good practitioners and bad practitioners. None

> of us should feel that we are being held captive by a particular

> physician. We all can vote with our checkbooks and our feet.

>

> One thing I've learned in the short time I've known about PSC (dx

> October '99) is that it is a tricky condition to diagnose and to treat.

> One doctor may know a lot about it, while another may know very

> little. It's up to us to discern where our doctors' skill sets are and

> then go to where we will be treated by knowledgable, compassionate,

> caring doctors.

>

> Tom

>

> " edith pearson " wrote:

> original article:/group//?start=7167

> >

> >

> > For years after my husband was diagnosed with PSC we were told that

> all his

> > symptoms were in his head. A month before he received his transplant

> the

> > doctor told him to be a " man " - that there really wasn't much wrong

> with

> > him and that it would be years before he'd need a transplant. We

> were told

> > the itching was psychological, that the fatigue was because he was

> lazy

> > (which believe me he never was)and to smarten up and get on with

> life. When

> > we pointed out that liver functions were ever increasing we were told

> they

> > meant nothing that they would go a lot higher before there would be

> any

> > physical problems. Our liver specialist moved away and never

> bothered

> > telling his patients that he was going. If I sound a little bitter

> believe

> > me I am. When you see the difference the transplant made you start

> to

> > understand that it was the doctor who had a psychological problem -

> some of

> > them sure don't know what they are talking about and won't refer you

> to

> > someone who can help you. Dave spent too much time feeling guilty

> about not

> > feeling well and getting no satisfaction from the medical profession.

> >

> > If you have a definite diagnoses of PSC and you don't always feel

> well

>

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

> Was the salesman clueless? Productopia has the answers.

> http://clickhere./click/1702

>

> -- Easily schedule meetings and events using the group calendar!

> -- /cal?listname= & m=1

Link to comment
Share on other sites

Tom,

You are right but between being constricted by medical insurance and costs

and plane fear or whatever, many of our people are being treated by doctors

that are not caring and knowledgeable, Jacquelyn is a prime example. I have

been nagging at her for months to get more opinions. Some people are too

kind for their own good and like in Jacquelyn's instance just to tired and

ill to do what is necessary to get the right help. This group is beneficial

in that respect because those not getting the right help are advised and

encouraged by the post tx patients, others that a very knowledgeable and

have had good experiences and even doctors like Aubrey.

Peg

Tom wrote:

> Reminds me of what a comedian once said: 50 percent of all doctors in

> this country graduated in the bottom half of their class.

>

> It's dangerous to paint with a broad brush, however. Like any

> profession, there are good practitioners and bad practitioners. None

> of us should feel that we are being held captive by a particular

> physician. We all can vote with our checkbooks and our feet.

>

> One thing I've learned in the short time I've known about PSC (dx

> October '99) is that it is a tricky condition to diagnose and to treat.

> One doctor may know a lot about it, while another may know very

> little. It's up to us to discern where our doctors' skill sets are and

> then go to where we will be treated by knowledgable, compassionate,

> caring doctors.

>

> Tom

>

> " edith pearson " wrote:

> original article:/group//?start=7167

> >

> >

> > For years after my husband was diagnosed with PSC we were told that

> all his

> > symptoms were in his head. A month before he received his transplant

> the

> > doctor told him to be a " man " - that there really wasn't much wrong

> with

> > him and that it would be years before he'd need a transplant. We

> were told

> > the itching was psychological, that the fatigue was because he was

> lazy

> > (which believe me he never was)and to smarten up and get on with

> life. When

> > we pointed out that liver functions were ever increasing we were told

> they

> > meant nothing that they would go a lot higher before there would be

> any

> > physical problems. Our liver specialist moved away and never

> bothered

> > telling his patients that he was going. If I sound a little bitter

> believe

> > me I am. When you see the difference the transplant made you start

> to

> > understand that it was the doctor who had a psychological problem -

> some of

> > them sure don't know what they are talking about and won't refer you

> to

> > someone who can help you. Dave spent too much time feeling guilty

> about not

> > feeling well and getting no satisfaction from the medical profession.

> >

> > If you have a definite diagnoses of PSC and you don't always feel

> well

>

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

> Was the salesman clueless? Productopia has the answers.

> http://clickhere./click/1702

>

> -- Easily schedule meetings and events using the group calendar!

> -- /cal?listname= & m=1

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Share on other sites

Peg--

I couldn't agree more. I guess we all need an advocate--someone in our

corner who will look out for us. We all need this group, too, for the

variety of opinions and experiences that are shared. I don't think you

can have too much knowledge about PSC, and I'm convinced that you can

have far too little.

Tom

peggy alfeld wrote:

original article:/group//?start=7170

> Tom,

> You are right but between being constricted by medical insurance and

costs

> and plane fear or whatever, many of our people are being treated by

doctors

> that are not caring and knowledgeable, Jacquelyn is a prime example.

I have

> been nagging at her for months to get more opinions. Some people are

too

> kind for their own good and like in Jacquelyn's instance just to

tired and

> ill to do what is necessary to get the right help. This group is

beneficial

> in that respect because those not getting the right help are advised

and

> encouraged by the post tx patients, others that a very knowledgeable

and

> have had good experiences and even doctors like Aubrey.

> Peg

>

> Tom wrote:

>

> > Reminds me of what a comedian once said: 50 percent of all doctors

in

> > this country graduated in the bottom half of their class.

> >

> > It's dangerous to paint with a broad brush, however. Like any

> > profession, there are good practitioners and bad practitioners.

None

> > of us should feel that we are being held captive by a particular

> > physician. We all can vote with our checkbooks and our feet.

> >

> > One thing I've learned in the short time I've known about PSC (dx

> > October '99) is that it is a tricky condition to diagnose and to

treat.

> > One doctor may know a lot about it, while another may know very

> > little. It's up to us to discern where our doctors' skill sets are

and

> > then go to where we will be treated by knowledgable, compassionate,

> > caring doctors.

> >

> > Tom

> >

> > " edith pearson " wrote:

> > original article:/group//?start=71

67

> > >

> > >

> > > For years after my husband was diagnosed with PSC we were told

that

> > all his

> > > symptoms were in his head. A month before he received his

transplant

> > the

> > > doctor told him to be a " man " - that there really wasn't much

wrong

> > with

> > > him and that it would be years before he'd need a transplant. We

> > were told

> > > the itching was psychological, that the fatigue was because he was

> > lazy

> > > (which believe me he never was)and to smarten up and get on with

> > life. When

> > > we pointed out that liver functions were ever increasing we were

told

> > they

> > > meant nothing that they would go a lot higher before there would

be

> > any

> > > physical problems. Our liver specialist moved away and never

> > bothered

> > > telling his patients that he was going. If I sound a little

bitter

> > believe

> > > me I am. When you see the difference the transplant made you

start

> > to

> > > understand that it was the doctor who had a psychological problem

-

> > some of

> > > them sure don't know what they are talking about and won't refer

you

> > to

> > > someone who can help you. Dave spent too much time feeling guilty

> > about not

> > > feeling well and getting no satisfaction from the medical

profession.

> > >

> > > If you have a definite diagnoses of PSC and you don't always feel

> > well

> >

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Peg--

I couldn't agree more. I guess we all need an advocate--someone in our

corner who will look out for us. We all need this group, too, for the

variety of opinions and experiences that are shared. I don't think you

can have too much knowledge about PSC, and I'm convinced that you can

have far too little.

Tom

peggy alfeld wrote:

original article:/group//?start=7170

> Tom,

> You are right but between being constricted by medical insurance and

costs

> and plane fear or whatever, many of our people are being treated by

doctors

> that are not caring and knowledgeable, Jacquelyn is a prime example.

I have

> been nagging at her for months to get more opinions. Some people are

too

> kind for their own good and like in Jacquelyn's instance just to

tired and

> ill to do what is necessary to get the right help. This group is

beneficial

> in that respect because those not getting the right help are advised

and

> encouraged by the post tx patients, others that a very knowledgeable

and

> have had good experiences and even doctors like Aubrey.

> Peg

>

> Tom wrote:

>

> > Reminds me of what a comedian once said: 50 percent of all doctors

in

> > this country graduated in the bottom half of their class.

> >

> > It's dangerous to paint with a broad brush, however. Like any

> > profession, there are good practitioners and bad practitioners.

None

> > of us should feel that we are being held captive by a particular

> > physician. We all can vote with our checkbooks and our feet.

> >

> > One thing I've learned in the short time I've known about PSC (dx

> > October '99) is that it is a tricky condition to diagnose and to

treat.

> > One doctor may know a lot about it, while another may know very

> > little. It's up to us to discern where our doctors' skill sets are

and

> > then go to where we will be treated by knowledgable, compassionate,

> > caring doctors.

> >

> > Tom

> >

> > " edith pearson " wrote:

> > original article:/group//?start=71

67

> > >

> > >

> > > For years after my husband was diagnosed with PSC we were told

that

> > all his

> > > symptoms were in his head. A month before he received his

transplant

> > the

> > > doctor told him to be a " man " - that there really wasn't much

wrong

> > with

> > > him and that it would be years before he'd need a transplant. We

> > were told

> > > the itching was psychological, that the fatigue was because he was

> > lazy

> > > (which believe me he never was)and to smarten up and get on with

> > life. When

> > > we pointed out that liver functions were ever increasing we were

told

> > they

> > > meant nothing that they would go a lot higher before there would

be

> > any

> > > physical problems. Our liver specialist moved away and never

> > bothered

> > > telling his patients that he was going. If I sound a little

bitter

> > believe

> > > me I am. When you see the difference the transplant made you

start

> > to

> > > understand that it was the doctor who had a psychological problem

-

> > some of

> > > them sure don't know what they are talking about and won't refer

you

> > to

> > > someone who can help you. Dave spent too much time feeling guilty

> > about not

> > > feeling well and getting no satisfaction from the medical

profession.

> > >

> > > If you have a definite diagnoses of PSC and you don't always feel

> > well

> >

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Tom,

Not only can one have too little knowledge about PSC, I'm

convinced that there IS too little knowledge about PSC, even

among the professionals (and they recognize that this is true).

Tim

--- Tom wrote:

> Peg--

>

> I couldn't agree more. I guess we all need an

> advocate--someone in our

> corner who will look out for us. We all need this group, too,

> for the variety of opinions and experiences that are shared.

> I don't think you can have too much knowledge about PSC, and

> I'm convinced that you can have far too little.

>

> Tom

__________________________________________________

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  • 3 weeks later...

Dear Mom....I mean Peg A, :)

You are absolutely right that I've been too ill and too loyal to these

idiotic doctors who don't know what they are dealing with. I'm very

seriously considering some other hospitals since the docs at Baylor don't

have a clue as to how they are going to treat this rare condition. Also, I'm

still dealing with these terrible colon and chest attacks.

So, Mom, I will get busy on that. I do have to have a repeat vena gram

in two weeks at Baylor...I will get online and let our precious group know

the exact date!!

I love you,

Jacquelyn

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Jacquelyn,

If you are my sister, and Peg is your mom... does that make her my mom

also? hmmm Well Mommy Dearest <grin> (PEG), thanks for all the work you have

done on the group, and thanks for holding my sister so close to your heart!

(By the way, my own mother always hated it when I called her " Mommy Dearest " ,

I loved tormenting her) <grin>

Love,

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Jacquelyn,

If you are my sister, and Peg is your mom... does that make her my mom

also? hmmm Well Mommy Dearest <grin> (PEG), thanks for all the work you have

done on the group, and thanks for holding my sister so close to your heart!

(By the way, my own mother always hated it when I called her " Mommy Dearest " ,

I loved tormenting her) <grin>

Love,

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Jacquelyn,

If you are my sister, and Peg is your mom... does that make her my mom

also? hmmm Well Mommy Dearest <grin> (PEG), thanks for all the work you have

done on the group, and thanks for holding my sister so close to your heart!

(By the way, my own mother always hated it when I called her " Mommy Dearest " ,

I loved tormenting her) <grin>

Love,

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Okay daughter dearest,

It feels weird to be everyone's mom (I'm sure I have a few sisters and brothers

out there in my age range) but I'd love to have you as my daughter and Mom is

telling you. GET ANOTHER DOCTOR AND GO TO ANOTHER CENTER!!!!! Why does it take

so

long for you kids to listen to me.

Peg

PSCMODERATOR1@... wrote:

> Jacquelyn,

> If you are my sister, and Peg is your mom... does that make her my mom

> also? hmmm Well Mommy Dearest <grin> (PEG), thanks for all the work you have

> done on the group, and thanks for holding my sister so close to your heart!

> (By the way, my own mother always hated it when I called her " Mommy Dearest " ,

> I loved tormenting her) <grin>

> Love,

>

>

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

> Sneezing, wheezing, trouble breathing? If you have allergies or asthma, or

>

> want to breathe happier and healthier, we can help. Visit gazoontite.com

>

> for the products, information and services you need to breathe easier.

> http://click./1/396/4/_/24674/_/946837008

>

> -- Talk to your group with your own voice!

> -- /VoiceChatPage?listName= & m=1

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Share on other sites

Okay daughter dearest,

It feels weird to be everyone's mom (I'm sure I have a few sisters and brothers

out there in my age range) but I'd love to have you as my daughter and Mom is

telling you. GET ANOTHER DOCTOR AND GO TO ANOTHER CENTER!!!!! Why does it take

so

long for you kids to listen to me.

Peg

PSCMODERATOR1@... wrote:

> Jacquelyn,

> If you are my sister, and Peg is your mom... does that make her my mom

> also? hmmm Well Mommy Dearest <grin> (PEG), thanks for all the work you have

> done on the group, and thanks for holding my sister so close to your heart!

> (By the way, my own mother always hated it when I called her " Mommy Dearest " ,

> I loved tormenting her) <grin>

> Love,

>

>

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

> Sneezing, wheezing, trouble breathing? If you have allergies or asthma, or

>

> want to breathe happier and healthier, we can help. Visit gazoontite.com

>

> for the products, information and services you need to breathe easier.

> http://click./1/396/4/_/24674/_/946837008

>

> -- Talk to your group with your own voice!

> -- /VoiceChatPage?listName= & m=1

Link to comment
Share on other sites

Okay daughter dearest,

It feels weird to be everyone's mom (I'm sure I have a few sisters and brothers

out there in my age range) but I'd love to have you as my daughter and Mom is

telling you. GET ANOTHER DOCTOR AND GO TO ANOTHER CENTER!!!!! Why does it take

so

long for you kids to listen to me.

Peg

PSCMODERATOR1@... wrote:

> Jacquelyn,

> If you are my sister, and Peg is your mom... does that make her my mom

> also? hmmm Well Mommy Dearest <grin> (PEG), thanks for all the work you have

> done on the group, and thanks for holding my sister so close to your heart!

> (By the way, my own mother always hated it when I called her " Mommy Dearest " ,

> I loved tormenting her) <grin>

> Love,

>

>

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

> Sneezing, wheezing, trouble breathing? If you have allergies or asthma, or

>

> want to breathe happier and healthier, we can help. Visit gazoontite.com

>

> for the products, information and services you need to breathe easier.

> http://click./1/396/4/_/24674/_/946837008

>

> -- Talk to your group with your own voice!

> -- /VoiceChatPage?listName= & m=1

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  • 12 years later...

I just saw someone mention Dr. Pop- Moody in Corpus Christi ,Tx. I have

been a patient of hers for the past 11 years and she is the greatest. As far as

I know she isn't taking any new patients at the moment. She is always booked. I

make appointments two months ahead of time. She is considered to be one of the

best in the south Texas area.

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