Re: Re: question about approaching dr?

[Guest guest]

I love it! I

have lots of work to do before then.

If anyone has

any great ideas for other places to find great data supporting the high dose

URSO let me know. I am on a hunt.

I already have

a notebook going. I just have been putting results of everything in it. Now

it is time to put some “research” into it.

From: [mailto: ] On Behalf Of Marci/Marc

Sent: Monday, August 22, 2005 6:25

PM

To:

Subject: Re:

question about approaching dr?

,

Commit to yourself that you are NOT leaving

without the high-dose

URSO!

PSC is an obscure disease and many doctors are

working from antiquated

or frankly ill-informed positions. Do your

homework and give this

doctor a crash course on the " latest and

greatest " results from

high-dose URSO. This is the most vital sell job

you will undertake.

I prepared a quick reference notebook (small

binder with clear page

fill able inserts) to show my husband's GI when we

wanted to go

high-dose (30 mg/kg/d). I printed articles only

from sources the GI

would receive as credible: World Journal of

Gastroenterology

(www.wjgnet.com), Hepatolgy (pulled from

Medline.com), et al. I also

only printed reports from 9/2004 to now. Current

and academically

credible information is imperative. I also printed

some anecdotal

postings of success from this board.

Highlight the KEY points. Have your most powerful

page first. When the

URSO topic came up, I had my notebook open, cited

my source and turned

it around for the GI. He glanced at it and

returned it to me. We

continued on and I again referenced the notebook,

citing an alternate

accredited source and emphasizing that URSO is a naturally

occurring

bile salt with NO side effects demonstrated over a

clinically

significant time period. This time he took the

binder and read more.

He went to return it me and I told him that binder

was his copy for

future reference; I made a duplicate for me. The

GI finally asked if I

worked for Axcan. " No " , I recanted,

" I work for his (my husband's)

liver. " The GI smiled; I knew my sale was

successfully completed.

In researching URSO for my presentation to the GI,

I learned a copious

amount about the drug, became extremely

comfortable and confident with

the facts and realized that to keep Marc's liver

undamaged we HAD to

have high-dose URSO.

I also loved finally being able to do something

constructive and

concrete to fight PSC. The notebook I created for

this initial need

has grown as Marc's case has evolved. Anytime I

want to approach any

of his medical team, I augment the original book.

It gives me a great

reference in discussion and has garnered a

tremendous amount of

respect from all the specialists we encounter.

Doing your homework shows your commitment to

fighting this disease. An

informed patient/family is the best asset a doctor

can have. You can

control this completely.

THE DOCTOR WORKS FOR YOU. ESTABLISH YOUR GOALS AND

DO NOT WAIVER.

You must have a strong team for your son. DO NOT

compromise any health

care and do not EVER become a spectator in this

process. Lead this

fight for your son. No one will EVER care more

about beating this than

you! Re-read the last sentence and NEVER forget

it.

Now, go put together your sales presentation.

And don't take " no " for an answer,

Marci

Marketing Genius Wife of Marc (PSC 2005)

>

>

> I have a question about how to approach your

doctor (or in my case,

my

> son's) about increasing his meds

(specifically the URSO). I have a

very

> easily offended doctor I am dealing

with. I think the high dose

URSO is a

> good suggestion that has been blown off in

the past. It has not

only been

> brought up here, but when we went to CHOP for

our second opinion.

While the

> stress of changing doctors would be great, I

am kind of leaning that

way if

> this is something she does not allow me to at

least talk about with

her.

> She shut me down very quickly before.

If anyone has any ideas, I

would love

> to hear them.

>

>

>

> -Recycle Yourself

>

> Become an Organ Donor

[Guest guest]

Deb,

My choices for

other docs are these…I could move him to CHOP which is a day trip for

every visit or I could move him down to a doctor from s Hopkins that is able

to see us in the Hagerstown/Frederick area. That would be like a half day

drive. I have no idea where I would get labs done with this sort of

change. I think I like the s Hopkins proximity, but I really liked

the CHOP experience. Yet another good choice would be DC Children’s.

I know the s Hopkins lady indicated that she would be willing to work in

coordination with CHOP. She seemed to have no ego issues. I think

that is what I have at Hershey.

Let me know

your thoughts…

Hope you are doing

well with the “sit in”. Thinking of you often.

From: [mailto: ] On Behalf Of Deb in VA

Sent: Monday, August 22, 2005 8:02

PM

To:

Subject: Re:

question about approaching dr?

,

First, I'd try the " nice " way of

bringing it up again, saying you

know that high-dose was recommended at CHOP, and

see what happens.

If you encounter resistance, then I'd pull out a

stack of abstracts

from the papers that suggest that high-dose urso

is better. I'd also

do the research for low-dose urso and have that

available, too. I'd

bet that what you'll find when you do the research

is that the most

recent studies lean toward high-dose. I'd show

this to her, and I'd

ask her why she's reluctant for your son to be on

it at a higher

dose. I'd ask her if there is any literature that

suggests that

higher doses are more harmful for children than

the dose he is

currently taking...

If she's still resistant and without good reason,

I'd fire her. You

shouldn't have to tiptoe around a doc. You

shouldn't have to put up

with being blown off. I went through a similar

situation when I was

in the process of diagnosis. The doc never

returned my calls,

promised me a dx from a biopsy that he didn't show

up to perform,

and he treated me like a know-nothing. I switched

and haven't looked

back since...Just my two cents. How hard is it to

find a good doc in

your area for a kid with PSC?

Take care,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX

5/19/2005, thrombosis in

branch of portal vein and cholangitis 8/20/2005

[Guest guest]

Thank you so

much . You are so efficient.

Blessings and

Thanks,

From: [mailto: ] On Behalf Of

Sent: Tuesday, August 23, 2005

2:30 AM

To:

Subject: Re:

question about approaching dr?

Dear ;

All of the high-dose ursodeoxycholic acid studies

in liver disease

are listed on this page:

http://www.psc-literature.org/hdurso.htm

The two most important one are probably these:

SA, Bansi DS, Hunt N, Von Bergmann K,

Fleming KA, Chapman RW

2001 A preliminary trial of high-dose

ursodeoxycholic acid in primary

sclerosing cholangitis. Gastroenterology 121:

900-907.

Harnois DM, Angulo P, nsen RA, Larusso NF,

Lindor KD 2001 High-

dose ursodeoxycholic acid as a therapy for

patients with primary

sclerosing cholangitis. Am. J. Gastroenterol. 96:

1558-1562.

This may save you some time?

Best regards,

Dave

(father of (20); PSC 07/03; UC 08/03)

> I love it! I have lots of work to do

before then.

> If anyone has any great ideas for other

places to find great data

supporting the high dose URSO let me know. I

am on a hunt.

> I already have a notebook going. I just

have been putting results

of everything in it. Now it is time to put

some " research " into it.

[Guest guest]

You were talking about getting labs done. We are 4 hours from our tx center. They let me have the lab done locally and they forward the results to the tx center. Saves alot of extra driving.marti Martens wrote:

Deb,

My choices for other docs are these…I could move him to CHOP which is a day trip for every visit or I could move him down to a doctor from s Hopkins that is able to see us in the Hagerstown/Frederick area. That would be like a half day drive. I have no idea where I would get labs done with this sort of change. I think I like the s Hopkins proximity, but I really liked the CHOP experience. Yet another good choice would be DC Children’s. I know the s Hopkins lady indicated that she would be willing to work in coordination with CHOP. She seemed to have no ego issues. I think that is what I have at Hershey.

Let me know your thoughts…

Hope you are doing well with the “sit in”. Thinking of you often.

From: [mailto: ] On Behalf Of Deb in VASent: Monday, August 22, 2005 8:02 PMTo: Subject: Re: question about approaching dr?

,First, I'd try the "nice" way of bringing it up again, saying you know that high-dose was recommended at CHOP, and see what happens. If you encounter resistance, then I'd pull out a stack of abstracts from the papers that suggest that high-dose urso is better. I'd also do the research for low-dose urso and have that available, too. I'd bet that what you'll find when you do the research is that the most recent studies lean toward high-dose. I'd show this to her, and I'd

ask her why she's reluctant for your son to be on it at a higher dose. I'd ask her if there is any literature that suggests that higher doses are more harmful for children than the dose he is currently taking...If she's still resistant and without good reason, I'd fire her. You shouldn't have to tiptoe around a doc. You shouldn't have to put up with being blown off. I went through a similar situation when I was in the process of diagnosis. The doc never returned my calls, promised me a dx from a biopsy that he didn't show up to perform, and he treated me like a know-nothing. I switched and haven't looked back since...Just my two cents. How hard is it to find a good doc in your area for a kid with PSC?Take care,Deb in VAPSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, thrombosis in branch of portal vein and cholangitis 8/20/2005__________________________________________________

[Guest guest]

True! I

forget now that he is on Medicaid I might be a little freer to go more places,

or fewer… hmmm! My concern was that it would not be an approved lab with

the insurance that we have…I wonder…is Medicaid accepted

everywhere?

From: [mailto: ] On Behalf Of Marti

Sent: Tuesday, August 23, 2005

10:18 AM

To:

Subject: RE: Re:

question about approaching dr?

You were talking about getting labs done. We are 4 hours from our tx

center. They let me have the lab done locally and they forward the results to

the tx center. Saves alot of extra driving.

marti

Martens wrote:

Deb,

My choices for

other docs are these…I could move him to CHOP which is a day trip for

every visit or I could move him down to a doctor from s Hopkins that is

able to see us in the Hagerstown/Frederick area. That would be like a

half day drive. I have no idea where I would get labs done with this sort

of change. I think I like the s Hopkins proximity, but I really liked

the CHOP experience. Yet another good choice would be DC

Children’s. I know the s Hopkins lady indicated that she would

be willing to work in coordination with CHOP. She seemed to have no ego

issues. I think that is what I have at Hershey.

Let me know

your thoughts…

Hope you are

doing well with the “sit in”. Thinking of you often.

From: [mailto: ] On Behalf Of Deb in VA

Sent: Monday, August 22, 2005 8:02

PM

To:

Subject: Re:

question about approaching dr?

,

First, I'd try the " nice " way of

bringing it up again, saying you

know that high-dose was recommended at CHOP, and

see what happens.

If you encounter resistance, then I'd pull out a

stack of abstracts

from the papers that suggest that high-dose urso

is better. I'd also

do the research for low-dose urso and have that available,

too. I'd

bet that what you'll find when you do the research

is that the most

recent studies lean toward high-dose. I'd show

this to her, and I'd

ask her why she's reluctant for your son to be on

it at a higher

dose. I'd ask her if there is any literature that

suggests that

higher doses are more harmful for children than

the dose he is

currently taking...

If she's still resistant and without good reason,

I'd fire her. You

shouldn't have to tiptoe around a doc. You

shouldn't have to put up

with being blown off. I went through a similar

situation when I was

in the process of diagnosis. The doc never

returned my calls,

promised me a dx from a biopsy that he didn't show

up to perform,

and he treated me

like a know-nothing. I switched and haven't looked

back since...Just my two cents. How hard is it to

find a good doc in

your area for a kid with PSC?

Take care,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX

5/19/2005, thrombosis in

branch of portal vein and cholangitis 8/20/2005

__________________________________________________

[Guest guest]

>

> If anyone has any great ideas for other places to find great data supporting

> the high dose URSO let me know. I am on a hunt.

: If you put this together, and I am sure the experts will help you here,

could I pretty please have you privately email me so that I can put together a

book with this info or Bob. Thank You Thank You. I have printed out many

papers and throw them into a pile under my desk at work and them when I go back

to edit them it is outdated or unbelieveabley overwhelming and too much for me

to even think about.

dee

[Guest guest]

Dee,

I sure

will. I am amassing some great stuff thanks to everyone here. Our

appointment is Thursday, so I will get it out then.

Take care,

From:

[mailto: ] On Behalf Of Deanna Vinovich

Sent: Tuesday, August 23, 2005

11:20 AM

To:

Subject: RE: Re:

question about approaching dr?

>

> If anyone has any great ideas for other

places to find great data supporting

> the high dose URSO let me know. I am on

a hunt.

: If you put this together, and I am

sure the experts will help you here, could I pretty please have you privately

email me so that I can put together a book with this info or Bob.

Thank You Thank You. I have printed out many papers and throw them into a pile

under my desk at work and them when I go back to edit them it is outdated or

unbelieveabley overwhelming and too much for me to even think about.

dee

[Guest guest]

I find myself in the same place. Looking at a day trip per visit, but you know, not playing 'wrestle the doctor' would be worth it, at least for me.

Bestjd, 45UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3ston City, ILkrmpotich@...

[Guest guest]

Never were

truer words ever said. It is traumatic none-the-less, especially since she is

the person who has “gone through all of it” with me. In this case,

I believe a brick could have been there with me and I would feel as attached.

From: [mailto: ] On Behalf Of JD & MARLENE KRMPOTICH

Sent: Tuesday, August 23, 2005

7:39 PM

To:

Subject: Re: Re:

question about approaching dr?

I find myself in the same place. Looking at a day trip per

visit, but you know, not playing 'wrestle the doctor' would be worth it, at

least for me.

Best

jd, 45

UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3

ston City, IL

krmpotich@...