Re: Looking for a liver specialist that will LISTEN

[Guest guest]

In our experience, these tests are all pretty normal. I'm surprised that his old

doc never checked for varices......They are uaually asymptomatic unless he has a

bleed. But my husband is checked routinely and  they band from 2 to 7 at a

time....Occasionally,he has no large ones. And his doc always checks for liver

cancer by doing an ultrasound every 6 months....because his chances of getting

liver cancer are hugely increased from having cirrhosis. Unfortunately,we live

in Ohio and go to The Cleveland Clinic Foundation for Ed's treament....so I'm

afraid I can't help with a doc in Iowa. I'm sorry.

                                       

                                    Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

________________________________

To: livercirrhosissupport

Sent: Tuesday, April 24, 2012 8:26 AM

Subject: Looking for a liver specialist that will

LISTEN

 

My hubby's first specialist passed away a while back. The clinic has assigned a

new doctor. Met her for the first time last week. Hubby doesn't like her. So,

I'm wondering if there's anyone here, that lives in central Iowa? If so, who is

your specialist? Would you recommend her/him to a new patient?

He has non-alcoholic cirrhosis, secondary polycythemia & type 2 diabetes. The

diabetes was diagnosed well after the cirrhosis & polycythemia.

Main complaint about his new doc is that she doesn't listen. She constantly

interrupted him. She'd ask him a question then didn't let him finish answering.

She also wants to do a bunch of new tests. Test for esophageal varices even

though he shows no symptoms. Some kind of protein test that Medicare won't pay

for, $165. Another blood test that Medicare won't pay for, $65. She did order

some blood work and he got those tests done, but he won't do these others.

She also wants to do another liver biopsy and a colonoscopy. Assume this is so

she can have results that aren't 5 or 6 years old. But is it really necessary?

Do cirrhosis patients get additional biopsies as a normal practice?

In all fairness, it's been about 5 years since he's seen the specialist, but his

symptoms haven't changed. I suspect she wants her own tests done and more recent

lab results, but she didn't even ask if his insurance would cover those tests.

Does anyone know if these tests are a normal part of a cirrhosis patient's life?

Also I suspect she wants to rule out liver cancer and/or colon cancer.

The only reason hubby went to this new specialist is because his last blood work

indicated he may now have portal hypertension coming on. As with most men,

hubby has no desire to go to any doctor most days. He likes his primary, but it

took us a while to find one that he'd agree to see. At this point, most of his

primary care focuses on his type 2 diabetes, since there really is no treatment

for his cirrhosis.

I would like for him to get these tests, but I won't fight with him over it.

It's his body. Even the ones that Medicare won't pay for. We can find a way to

make payments.

Anyway, the main reason I'm here today is to try to find a different liver

specialist. Central Iowa area would be best. Des Moines, Ames, Marshalltown.

His current specialist is at the Iowa Digestive Diseases Center in West Des

Moines. Anyone here know of a doctor that will actually listen to their

patients?

Thanks!

Twila

[Guest guest]

In our experience, these tests are all pretty normal. I'm surprised that his old

doc never checked for varices......They are uaually asymptomatic unless he has a

bleed. But my husband is checked routinely and  they band from 2 to 7 at a

time....Occasionally,he has no large ones. And his doc always checks for liver

cancer by doing an ultrasound every 6 months....because his chances of getting

liver cancer are hugely increased from having cirrhosis. Unfortunately,we live

in Ohio and go to The Cleveland Clinic Foundation for Ed's treament....so I'm

afraid I can't help with a doc in Iowa. I'm sorry.

                                       

                                    Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

________________________________

To: livercirrhosissupport

Sent: Tuesday, April 24, 2012 8:26 AM

Subject: Looking for a liver specialist that will

LISTEN

 

My hubby's first specialist passed away a while back. The clinic has assigned a

new doctor. Met her for the first time last week. Hubby doesn't like her. So,

I'm wondering if there's anyone here, that lives in central Iowa? If so, who is

your specialist? Would you recommend her/him to a new patient?

He has non-alcoholic cirrhosis, secondary polycythemia & type 2 diabetes. The

diabetes was diagnosed well after the cirrhosis & polycythemia.

Main complaint about his new doc is that she doesn't listen. She constantly

interrupted him. She'd ask him a question then didn't let him finish answering.

She also wants to do a bunch of new tests. Test for esophageal varices even

though he shows no symptoms. Some kind of protein test that Medicare won't pay

for, $165. Another blood test that Medicare won't pay for, $65. She did order

some blood work and he got those tests done, but he won't do these others.

She also wants to do another liver biopsy and a colonoscopy. Assume this is so

she can have results that aren't 5 or 6 years old. But is it really necessary?

Do cirrhosis patients get additional biopsies as a normal practice?

In all fairness, it's been about 5 years since he's seen the specialist, but his

symptoms haven't changed. I suspect she wants her own tests done and more recent

lab results, but she didn't even ask if his insurance would cover those tests.

Does anyone know if these tests are a normal part of a cirrhosis patient's life?

Also I suspect she wants to rule out liver cancer and/or colon cancer.

The only reason hubby went to this new specialist is because his last blood work

indicated he may now have portal hypertension coming on. As with most men,

hubby has no desire to go to any doctor most days. He likes his primary, but it

took us a while to find one that he'd agree to see. At this point, most of his

primary care focuses on his type 2 diabetes, since there really is no treatment

for his cirrhosis.

I would like for him to get these tests, but I won't fight with him over it.

It's his body. Even the ones that Medicare won't pay for. We can find a way to

make payments.

Anyway, the main reason I'm here today is to try to find a different liver

specialist. Central Iowa area would be best. Des Moines, Ames, Marshalltown.

His current specialist is at the Iowa Digestive Diseases Center in West Des

Moines. Anyone here know of a doctor that will actually listen to their

patients?

Thanks!

Twila

[Guest guest]

I have to agree-- these tests are normal and I think the specialist is right to

ask for them. I know it can seem difficult and frustrating to have to go through

(and pay for!) all these tests, but at the very least your husband should be

checked for varices, especially if portal hypertension is a concern. Varices can

be life-threatening if unchecked, and they're one result of portal

hypertension-- if your husband has the latter, he likely has or will soon

develop varices.

My GI found several varices in my stomach and esophagus after my diagnosis. My

symptoms? None. None at all. I'm lucky he checked and caught them early. I

didn't need banding, but I had to go on beta blockers and proton pump inhibitors

(to soothe the inflammation in my stomach lining).

I'm less knowledgeable about having multiple biopsies, but 5 or 6 years seems

like a long time. She may want to check whether his condition has worsened

signficantly (which again, can be asymptomatic for some people), and if his

condition has stayed the same, she (and you!) need to know that too, because it

would be a good sign for the time being. Not getting worse is very very

positive!

Seeking a new doctor might be a good idea if you and your husband don't connect

with this specialist and feel that you aren't being heard, but any liver doctor

you see will likely want to order these tests as well.

>

> In our experience, these tests are all pretty normal. I'm surprised that his

old doc never checked for varices......They are uaually asymptomatic unless he

has a bleed. But my husband is checked routinely and  they band from 2 to 7 at

a time....Occasionally,he has no large ones. And his doc always checks for liver

cancer by doing an ultrasound every 6 months....because his chances of getting

liver cancer are hugely increased from having cirrhosis. Unfortunately,we live

in Ohio and go to The Cleveland Clinic Foundation for Ed's treament....so I'm

afraid I can't help with a doc in Iowa. I'm sorry.

>

>

>                                        

>                                    

Love,Jill

>  

> We don't remember days, we remember moments.

> Life is not measured by the breaths we take,but by the moments that take our

breath away.

>

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Tuesday, April 24, 2012 8:26 AM

> Subject: Looking for a liver specialist that will

LISTEN

>

>

>

>  

>

> My hubby's first specialist passed away a while back. The clinic has assigned

a new doctor. Met her for the first time last week. Hubby doesn't like her.

So, I'm wondering if there's anyone here, that lives in central Iowa? If so,

who is your specialist? Would you recommend her/him to a new patient?

>

> He has non-alcoholic cirrhosis, secondary polycythemia & type 2 diabetes. The

diabetes was diagnosed well after the cirrhosis & polycythemia.

>

> Main complaint about his new doc is that she doesn't listen. She constantly

interrupted him. She'd ask him a question then didn't let him finish answering.

>

> She also wants to do a bunch of new tests. Test for esophageal varices even

though he shows no symptoms. Some kind of protein test that Medicare won't pay

for, $165. Another blood test that Medicare won't pay for, $65. She did order

some blood work and he got those tests done, but he won't do these others.

>

> She also wants to do another liver biopsy and a colonoscopy. Assume this is

so she can have results that aren't 5 or 6 years old. But is it really

necessary? Do cirrhosis patients get additional biopsies as a normal practice?

>

> In all fairness, it's been about 5 years since he's seen the specialist, but

his symptoms haven't changed. I suspect she wants her own tests done and more

recent lab results, but she didn't even ask if his insurance would cover those

tests. Does anyone know if these tests are a normal part of a cirrhosis

patient's life?

>

> Also I suspect she wants to rule out liver cancer and/or colon cancer.

>

> The only reason hubby went to this new specialist is because his last blood

work indicated he may now have portal hypertension coming on. As with most men,

hubby has no desire to go to any doctor most days. He likes his primary, but it

took us a while to find one that he'd agree to see. At this point, most of his

primary care focuses on his type 2 diabetes, since there really is no treatment

for his cirrhosis.

>

> I would like for him to get these tests, but I won't fight with him over it.

It's his body. Even the ones that Medicare won't pay for. We can find a way to

make payments.

>

> Anyway, the main reason I'm here today is to try to find a different liver

specialist. Central Iowa area would be best. Des Moines, Ames, Marshalltown.

His current specialist is at the Iowa Digestive Diseases Center in West Des

Moines. Anyone here know of a doctor that will actually listen to their

patients?

>

> Thanks!

> Twila

>

>

>

>

>

[Guest guest]

Although these tests are normal it still does not explain why the doctor is

not letting him talk. Most of this disease is about being heard and listened

to. Not everyone wants all treatments that are available. Just because

something is normal does not mean it has to be accepted. Financial hardship

is a reality and this disease can really blow a well intentioned budget. I

would say that it would be better to find a doctor who listens and that you

can relate to then it is to have the best doctor in the world that can

bankrupt you. While the tests are normal...it is okay to state to the doctor

I only have this much money...which ones are the most important for his

longevity and for his best health. Look at your insurance and what it will

pay and also sometimes the doctors can rework the codes so that something

will be paid for that previously was not.

I understand the money part really well and work hard for mine and have to

balance life with those decisions. Nothing wrong with it. My doctor is an

angel because he listens and he tells me what I need and why and tells me

what the consequences will be of not having it....and then we discuss

it....after listening to him I make a decision that I can live with both

emotionally, physically and financially.

Best of luck and I am sorry but I don't live close to you...but my heart is

with you on this.

Becky...slayer of the dragon and defender of little gnomes.

If you are going to worry, do not pray.

If you are going to pray, do not worry.

From: livercirrhosissupport

[mailto:livercirrhosissupport ] On Behalf Of tjingham

Sent: Tuesday, April 24, 2012 8:26 AM

To: livercirrhosissupport

Subject: Looking for a liver specialist that will

LISTEN

My hubby's first specialist passed away a while back. The clinic has

assigned a new doctor. Met her for the first time last week. Hubby doesn't

like her. So, I'm wondering if there's anyone here, that lives in central

Iowa? If so, who is your specialist? Would you recommend her/him to a new

patient?

He has non-alcoholic cirrhosis, secondary polycythemia & type 2 diabetes.

The diabetes was diagnosed well after the cirrhosis & polycythemia.

Main complaint about his new doc is that she doesn't listen. She constantly

interrupted him. She'd ask him a question then didn't let him finish

answering.

She also wants to do a bunch of new tests. Test for esophageal varices even

though he shows no symptoms. Some kind of protein test that Medicare won't

pay for, $165. Another blood test that Medicare won't pay for, $65. She did

order some blood work and he got those tests done, but he won't do these

others.

She also wants to do another liver biopsy and a colonoscopy. Assume this is

so she can have results that aren't 5 or 6 years old. But is it really

necessary? Do cirrhosis patients get additional biopsies as a normal

practice?

In all fairness, it's been about 5 years since he's seen the specialist, but

his symptoms haven't changed. I suspect she wants her own tests done and

more recent lab results, but she didn't even ask if his insurance would

cover those tests. Does anyone know if these tests are a normal part of a

cirrhosis patient's life?

Also I suspect she wants to rule out liver cancer and/or colon cancer.

The only reason hubby went to this new specialist is because his last blood

work indicated he may now have portal hypertension coming on. As with most

men, hubby has no desire to go to any doctor most days. He likes his

primary, but it took us a while to find one that he'd agree to see. At this

point, most of his primary care focuses on his type 2 diabetes, since there

really is no treatment for his cirrhosis.

I would like for him to get these tests, but I won't fight with him over it.

It's his body. Even the ones that Medicare won't pay for. We can find a way

to make payments.

Anyway, the main reason I'm here today is to try to find a different liver

specialist. Central Iowa area would be best. Des Moines, Ames, Marshalltown.

His current specialist is at the Iowa Digestive Diseases Center in West Des

Moines. Anyone here know of a doctor that will actually listen to their

patients?

Thanks!

Twila

[Guest guest]

We owe thousands and thousands to The Cleveland Clinic. The hospital has a

special credit card that you apply for,and beleive me if we can get it anybody

can!, that has low interest and the payments are minimal. We had no other

choice. Call the financial aid office and see what they have available. But I do

agree that if the doc won't let you talk...find a new one.. Go on the centers

website and see if there are any other hepatologists.  Do a search for

hepatologists in your area. We travel 2 1/2 to 3 hours(depending on traffic) to

see Ed's hep doc in Cleveland.  We too are lucky. His doc is great. We question

him and he sometimes has to see our point of view . He's never even scheduled a

biopsy because he says with all Ed's other symptoms he doesn't need one more

test to say he has cirrhosis. he is pretty adament about the EGDs because of

Ed's history with Esophageal varices. Much luck to you in your search. This

disease just stinks,doesn't it?

                                       

                                    Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

________________________________

To: livercirrhosissupport

Sent: Tuesday, April 24, 2012 11:24 AM

Subject: RE: Looking for a liver specialist that will

LISTEN

 

Although these tests are normal it still does not explain why the doctor is

not letting him talk. Most of this disease is about being heard and listened

to. Not everyone wants all treatments that are available. Just because

something is normal does not mean it has to be accepted. Financial hardship

is a reality and this disease can really blow a well intentioned budget. I

would say that it would be better to find a doctor who listens and that you

can relate to then it is to have the best doctor in the world that can

bankrupt you. While the tests are normal...it is okay to state to the doctor

I only have this much money...which ones are the most important for his

longevity and for his best health. Look at your insurance and what it will

pay and also sometimes the doctors can rework the codes so that something

will be paid for that previously was not.

I understand the money part really well and work hard for mine and have to

balance life with those decisions. Nothing wrong with it. My doctor is an

angel because he listens and he tells me what I need and why and tells me

what the consequences will be of not having it....and then we discuss

it....after listening to him I make a decision that I can live with both

emotionally, physically and financially.

Best of luck and I am sorry but I don't live close to you...but my heart is

with you on this.

Becky...slayer of the dragon and defender of little gnomes.

If you are going to worry, do not pray.

If you are going to pray, do not worry.

From: livercirrhosissupport

[mailto:livercirrhosissupport ] On Behalf Of tjingham

Sent: Tuesday, April 24, 2012 8:26 AM

To: livercirrhosissupport

Subject: Looking for a liver specialist that will

LISTEN

My hubby's first specialist passed away a while back. The clinic has

assigned a new doctor. Met her for the first time last week. Hubby doesn't

like her. So, I'm wondering if there's anyone here, that lives in central

Iowa? If so, who is your specialist? Would you recommend her/him to a new

patient?

He has non-alcoholic cirrhosis, secondary polycythemia & type 2 diabetes.

The diabetes was diagnosed well after the cirrhosis & polycythemia.

Main complaint about his new doc is that she doesn't listen. She constantly

interrupted him. She'd ask him a question then didn't let him finish

answering.

She also wants to do a bunch of new tests. Test for esophageal varices even

though he shows no symptoms. Some kind of protein test that Medicare won't

pay for, $165. Another blood test that Medicare won't pay for, $65. She did

order some blood work and he got those tests done, but he won't do these

others.

She also wants to do another liver biopsy and a colonoscopy. Assume this is

so she can have results that aren't 5 or 6 years old. But is it really

necessary? Do cirrhosis patients get additional biopsies as a normal

practice?

In all fairness, it's been about 5 years since he's seen the specialist, but

his symptoms haven't changed. I suspect she wants her own tests done and

more recent lab results, but she didn't even ask if his insurance would

cover those tests. Does anyone know if these tests are a normal part of a

cirrhosis patient's life?

Also I suspect she wants to rule out liver cancer and/or colon cancer.

The only reason hubby went to this new specialist is because his last blood

work indicated he may now have portal hypertension coming on. As with most

men, hubby has no desire to go to any doctor most days. He likes his

primary, but it took us a while to find one that he'd agree to see. At this

point, most of his primary care focuses on his type 2 diabetes, since there

really is no treatment for his cirrhosis.

I would like for him to get these tests, but I won't fight with him over it.

It's his body. Even the ones that Medicare won't pay for. We can find a way

to make payments.

Anyway, the main reason I'm here today is to try to find a different liver

specialist. Central Iowa area would be best. Des Moines, Ames, Marshalltown.

His current specialist is at the Iowa Digestive Diseases Center in West Des

Moines. Anyone here know of a doctor that will actually listen to their

patients?

Thanks!

Twila

[Guest guest]

Excellent advice Jill.....and yes it does stink but I know many people with far

worse crosses to bear so I try to be gentle with the criticism...LOL...

If you are going to worry, do not pray.

If you are going to pray, do not worry.

From: livercirrhosissupport

[mailto:livercirrhosissupport ] On Behalf Of Jill

Sent: Tuesday, April 24, 2012 11:44 AM

To: livercirrhosissupport

Subject: Re: Looking for a liver specialist that will

LISTEN

We owe thousands and thousands to The Cleveland Clinic. The hospital has a

special credit card that you apply for,and beleive me if we can get it anybody

can!, that has low interest and the payments are minimal. We had no other

choice. Call the financial aid office and see what they have available. But I do

agree that if the doc won't let you talk...find a new one.. Go on the centers

website and see if there are any other hepatologists. Do a search for

hepatologists in your area. We travel 2 1/2 to 3 hours(depending on traffic) to

see Ed's hep doc in Cleveland. We too are lucky. His doc is great. We question

him and he sometimes has to see our point of view . He's never even scheduled a

biopsy because he says with all Ed's other symptoms he doesn't need one more

test to say he has cirrhosis. he is pretty adament about the EGDs because of

Ed's history with Esophageal varices. Much luck to you in your search. This

disease just stinks,doesn't it?

Love,Jill

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

________________________________

From: Becky Hoddy <chennoa@... <mailto:chennoa%40chartermi.net>

>

To: livercirrhosissupport

<mailto:livercirrhosissupport%40yahoogroups.com>

Sent: Tuesday, April 24, 2012 11:24 AM

Subject: RE: Looking for a liver specialist that will

LISTEN

Although these tests are normal it still does not explain why the doctor is

not letting him talk. Most of this disease is about being heard and listened

to. Not everyone wants all treatments that are available. Just because

something is normal does not mean it has to be accepted. Financial hardship

is a reality and this disease can really blow a well intentioned budget. I

would say that it would be better to find a doctor who listens and that you

can relate to then it is to have the best doctor in the world that can

bankrupt you. While the tests are normal...it is okay to state to the doctor

I only have this much money...which ones are the most important for his

longevity and for his best health. Look at your insurance and what it will

pay and also sometimes the doctors can rework the codes so that something

will be paid for that previously was not.

I understand the money part really well and work hard for mine and have to

balance life with those decisions. Nothing wrong with it. My doctor is an

angel because he listens and he tells me what I need and why and tells me

what the consequences will be of not having it....and then we discuss

it....after listening to him I make a decision that I can live with both

emotionally, physically and financially.

Best of luck and I am sorry but I don't live close to you...but my heart is

with you on this.

Becky...slayer of the dragon and defender of little gnomes.

If you are going to worry, do not pray.

If you are going to pray, do not worry.

From: livercirrhosissupport

<mailto:livercirrhosissupport%40yahoogroups.com>

[mailto:livercirrhosissupport

<mailto:livercirrhosissupport%40yahoogroups.com> ] On Behalf Of tjingham

Sent: Tuesday, April 24, 2012 8:26 AM

To: livercirrhosissupport

<mailto:livercirrhosissupport%40yahoogroups.com>

Subject: Looking for a liver specialist that will

LISTEN

My hubby's first specialist passed away a while back. The clinic has

assigned a new doctor. Met her for the first time last week. Hubby doesn't

like her. So, I'm wondering if there's anyone here, that lives in central

Iowa? If so, who is your specialist? Would you recommend her/him to a new

patient?

He has non-alcoholic cirrhosis, secondary polycythemia & type 2 diabetes.

The diabetes was diagnosed well after the cirrhosis & polycythemia.

Main complaint about his new doc is that she doesn't listen. She constantly

interrupted him. She'd ask him a question then didn't let him finish

answering.

She also wants to do a bunch of new tests. Test for esophageal varices even

though he shows no symptoms. Some kind of protein test that Medicare won't

pay for, $165. Another blood test that Medicare won't pay for, $65. She did

order some blood work and he got those tests done, but he won't do these

others.

She also wants to do another liver biopsy and a colonoscopy. Assume this is

so she can have results that aren't 5 or 6 years old. But is it really

necessary? Do cirrhosis patients get additional biopsies as a normal

practice?

In all fairness, it's been about 5 years since he's seen the specialist, but

his symptoms haven't changed. I suspect she wants her own tests done and

more recent lab results, but she didn't even ask if his insurance would

cover those tests. Does anyone know if these tests are a normal part of a

cirrhosis patient's life?

Also I suspect she wants to rule out liver cancer and/or colon cancer.

The only reason hubby went to this new specialist is because his last blood

work indicated he may now have portal hypertension coming on. As with most

men, hubby has no desire to go to any doctor most days. He likes his

primary, but it took us a while to find one that he'd agree to see. At this

point, most of his primary care focuses on his type 2 diabetes, since there

really is no treatment for his cirrhosis.

I would like for him to get these tests, but I won't fight with him over it.

It's his body. Even the ones that Medicare won't pay for. We can find a way

to make payments.

Anyway, the main reason I'm here today is to try to find a different liver

specialist. Central Iowa area would be best. Des Moines, Ames, Marshalltown.

His current specialist is at the Iowa Digestive Diseases Center in West Des

Moines. Anyone here know of a doctor that will actually listen to their

patients?

Thanks!

Twila

[Guest guest]

I go to University of Colorado liver transplant program. Standard tests are s

follows:

Every 6 months, screening for liver tumors-either CT scan or ultrasound.

Every 6 months-labs and alfa feto protien test for cancer markers.

Every two years endoscope for esophageal varicies, more often if varicies

present and even every three months if varicies are large, requiring regular

banding.

A repeat liver biopsy is generally NEVER done, except for extreme cases,

although it is almost a routine procedure for post transplant folks. 

A colonoscopy is per age,and is not really related to the liver.

I hope this helps give you and idea of our tests out here. Love, Bobby

 

________________________________

To: livercirrhosissupport

Sent: Tuesday, April 24, 2012 6:26 AM

Subject: Looking for a liver specialist that will

LISTEN

 

My hubby's first specialist passed away a while back. The clinic has assigned a

new doctor. Met her for the first time last week. Hubby doesn't like her. So,

I'm wondering if there's anyone here, that lives in central Iowa? If so, who is

your specialist? Would you recommend her/him to a new patient?

He has non-alcoholic cirrhosis, secondary polycythemia & type 2 diabetes. The

diabetes was diagnosed well after the cirrhosis & polycythemia.

Main complaint about his new doc is that she doesn't listen. She constantly

interrupted him. She'd ask him a question then didn't let him finish answering.

She also wants to do a bunch of new tests. Test for esophageal varices even

though he shows no symptoms. Some kind of protein test that Medicare won't pay

for, $165. Another blood test that Medicare won't pay for, $65. She did order

some blood work and he got those tests done, but he won't do these others.

She also wants to do another liver biopsy and a colonoscopy. Assume this is so

she can have results that aren't 5 or 6 years old. But is it really necessary?

Do cirrhosis patients get additional biopsies as a normal practice?

In all fairness, it's been about 5 years since he's seen the specialist, but his

symptoms haven't changed. I suspect she wants her own tests done and more recent

lab results, but she didn't even ask if his insurance would cover those tests.

Does anyone know if these tests are a normal part of a cirrhosis patient's life?

Also I suspect she wants to rule out liver cancer and/or colon cancer.

The only reason hubby went to this new specialist is because his last blood work

indicated he may now have portal hypertension coming on. As with most men,

hubby has no desire to go to any doctor most days. He likes his primary, but it

took us a while to find one that he'd agree to see. At this point, most of his

primary care focuses on his type 2 diabetes, since there really is no treatment

for his cirrhosis.

I would like for him to get these tests, but I won't fight with him over it.

It's his body. Even the ones that Medicare won't pay for. We can find a way to

make payments.

Anyway, the main reason I'm here today is to try to find a different liver

specialist. Central Iowa area would be best. Des Moines, Ames, Marshalltown.

His current specialist is at the Iowa Digestive Diseases Center in West Des

Moines. Anyone here know of a doctor that will actually listen to their

patients?

Thanks!

Twila

[Guest guest]

My tests were very much the same.

Every 6 months for an Ultra Sound and then if anything was seen, followed by a

CT Scan

I've only had one endoscope and the Gastro seemed surprise and happy that I do

not even have a hint of varicies.  Of course, I had blood and alra feto protein

tests prior to the Ultra Sound.  I have never had a colonoscopy and guess I

never will.

My baby brother died only a little over a year ago of colon cancer and so, our

whole family had to be checked since it's hereditary.  Not much use doing one

on me.

Gloria

________________________________

 

I go to University of Colorado liver transplant program. Standard tests are s

follows:

Every 6 months, screening for liver tumors-either CT scan or ultrasound.

Every 6 months-labs and alfa feto protien test for cancer markers.

Every two years endoscope for esophageal varicies, more often if varicies

present and even every three months if varicies are large, requiring regular

banding.

A repeat liver biopsy is generally NEVER done, except for extreme cases,

although it is almost a routine procedure for post transplant folks. 

A colonoscopy is per age,and is not really related to the liver.

I hope this helps give you and idea of our tests out here. Love, Bobby

 

________________________________

To: livercirrhosissupport

Sent: Tuesday, April 24, 2012 6:26 AM

Subject: Looking for a liver specialist that will

LISTEN

 

My hubby's first specialist passed away a while back. The clinic has assigned a

new doctor. Met her for the first time last week. Hubby doesn't like her. So,

I'm wondering if there's anyone here, that lives in central Iowa? If so, who is

your specialist? Would you recommend her/him to a new patient?

He has non-alcoholic cirrhosis, secondary polycythemia & type 2 diabetes. The

diabetes was diagnosed well after the cirrhosis & polycythemia.

Main complaint about his new doc is that she doesn't listen. She constantly

interrupted him. She'd ask him a question then didn't let him finish answering.

She also wants to do a bunch of new tests. Test for esophageal varices even

though he shows no symptoms. Some kind of protein test that Medicare won't pay

for, $165. Another blood test that Medicare won't pay for, $65. She did order

some blood work and he got those tests done, but he won't do these others.

She also wants to do another liver biopsy and a colonoscopy. Assume this is so

she can have results that aren't 5 or 6 years old. But is it really necessary?

Do cirrhosis patients get additional biopsies as a normal practice?

In all fairness, it's been about 5 years since he's seen the specialist, but his

symptoms haven't changed. I suspect she wants her own tests done and more recent

lab results, but she didn't even ask if his insurance would cover those tests.

Does anyone know if these tests are a normal part of a cirrhosis patient's life?

Also I suspect she wants to rule out liver cancer and/or colon cancer.

The only reason hubby went to this new specialist is because his last blood work

indicated he may now have portal hypertension coming on. As with most men,

hubby has no desire to go to any doctor most days. He likes his primary, but it

took us a while to find one that he'd agree to see. At this point, most of his

primary care focuses on his type 2 diabetes, since there really is no treatment

for his cirrhosis.

I would like for him to get these tests, but I won't fight with him over it.

It's his body. Even the ones that Medicare won't pay for. We can find a way to

make payments.

Anyway, the main reason I'm here today is to try to find a different liver

specialist. Central Iowa area would be best. Des Moines, Ames, Marshalltown.

His current specialist is at the Iowa Digestive Diseases Center in West Des

Moines. Anyone here know of a doctor that will actually listen to their

patients?

Thanks!

Twila

[Guest guest]

Sorry to hear that, I dint know where you live but,there is a hepatologist in

Mobile alabama

DR. Herrea he is a great Dr. he is also on the transplant

team @ The Mobile Infirmy..hope this helps...good luck!!

 

>________________________________

>

> Donny

>        

> donnywilliams2006@...

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Thursday, April 26, 2012 12:12 PM

Subject: Re: Looking for a liver specialist that will

LISTEN

 

My tests were very much the same.

Every 6 months for an Ultra Sound and then if anything was seen, followed by a

CT Scan

I've only had one endoscope and the Gastro seemed surprise and happy that I do

not even have a hint of varicies.  Of course, I had blood and alra feto protein

tests prior to the Ultra Sound.  I have never had a colonoscopy and guess I

never will.

My baby brother died only a little over a year ago of colon cancer and so, our

whole family had to be checked since it's hereditary.  Not much use doing one

on me.

Gloria

________________________________

 

I go to University of Colorado liver transplant program. Standard tests are s

follows:

Every 6 months, screening for liver tumors-either CT scan or ultrasound.

Every 6 months-labs and alfa feto protien test for cancer markers.

Every two years endoscope for esophageal varicies, more often if varicies

present and even every three months if varicies are large, requiring regular

banding.

A repeat liver biopsy is generally NEVER done, except for extreme cases,

although it is almost a routine procedure for post transplant folks. 

A colonoscopy is per age,and is not really related to the liver.

I hope this helps give you and idea of our tests out here. Love, Bobby

 

________________________________

To: livercirrhosissupport

Sent: Tuesday, April 24, 2012 6:26 AM

Subject: Looking for a liver specialist that will

LISTEN

 

My hubby's first specialist passed away a while back. The clinic has assigned a

new doctor. Met her for the first time last week. Hubby doesn't like her. So,

I'm wondering if there's anyone here, that lives in central Iowa? If so, who is

your specialist? Would you recommend her/him to a new patient?

He has non-alcoholic cirrhosis, secondary polycythemia & type 2 diabetes. The

diabetes was diagnosed well after the cirrhosis & polycythemia.

Main complaint about his new doc is that she doesn't listen. She constantly

interrupted him. She'd ask him a question then didn't let him finish answering.

She also wants to do a bunch of new tests. Test for esophageal varices even

though he shows no symptoms. Some kind of protein test that Medicare won't pay

for, $165. Another blood test that Medicare won't pay for, $65. She did order

some blood work and he got those tests done, but he won't do these others.

She also wants to do another liver biopsy and a colonoscopy. Assume this is so

she can have results that aren't 5 or 6 years old. But is it really necessary?

Do cirrhosis patients get additional biopsies as a normal practice?

In all fairness, it's been about 5 years since he's seen the specialist, but his

symptoms haven't changed. I suspect she wants her own tests done and more recent

lab results, but she didn't even ask if his insurance would cover those tests.

Does anyone know if these tests are a normal part of a cirrhosis patient's life?

Also I suspect she wants to rule out liver cancer and/or colon cancer.

The only reason hubby went to this new specialist is because his last blood work

indicated he may now have portal hypertension coming on. As with most men,

hubby has no desire to go to any doctor most days. He likes his primary, but it

took us a while to find one that he'd agree to see. At this point, most of his

primary care focuses on his type 2 diabetes, since there really is no treatment

for his cirrhosis.

I would like for him to get these tests, but I won't fight with him over it.

It's his body. Even the ones that Medicare won't pay for. We can find a way to

make payments.

Anyway, the main reason I'm here today is to try to find a different liver

specialist. Central Iowa area would be best. Des Moines, Ames, Marshalltown.

His current specialist is at the Iowa Digestive Diseases Center in West Des

Moines. Anyone here know of a doctor that will actually listen to their

patients?

Thanks!

Twila