Re: Mayo appoitment

[Guest guest]

Sue

I don't post very often but I'm scheduled for Mayo Aug 4 and I believe you

also went to Mayo. Is it possible to be done in 3 days? My appointment is

on a Wednesday and I would hope to come home over the weekend and not stay.

Any info about Mayo would be helpful. My appointment is with Dr. Czaja.

Thanks again

Susie

[Guest guest]

Susie:

I always go on a Tuesday and the first two times I came home by Thursday the

last time it was Friday. They schedule you the first day with all the

doctors and tests they want to have done. This is decided by talking to one

of Dr. Czaja's many colleges and he also comes in and sees you. I usually

have nothing to eat and the about lunch time the first day you will get all

of your appointments in a little folder. You can agree to have them that

week and once in awhile I have had them scheduled for the next week but I

would cancel them because I only can go down the some many times.

The blood is taken the first day. Then you can go eat. They are really easy

to work with and never find a crabby person. (Oh ha, the first time I was

there, My sister and I found one in the x-ray department.) My sister told

her she didn't have to be crabby at us because I couldn't help I was sick.

Boy did we get results after she said that. Otherwise nobody is crabby just

very helpful.

Sue AIH

Wisconsin

[Guest guest]

>From: " Don Hanson " <donhanson@...>

>Reply- onelist

>< onelist>

>Subject: Re: [ ] Mayo appoitment

>Date: Wed, 30 Jun 1999 10:49:56 -0500

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>From: " Don Hanson " <donhanson@...>

>

>Hi Susie,

>

>The time frame really depends on the tests they want done and the

>specialists they want you to see. I had appointments on 9 days, spanning 2

>weekends. Two of those days were for a biopsy and a recovery day. Now, mine

>was a particularly difficult case, and I wouldn't expect most to be so

>involved. Mayo's web site says to plan on 4 to 5 days.

>

>Dr Czaja has the reputation of being very thorough. When the receptionists

>saw the size of my schedule they guessed it must be Czaja. But, in my case,

>the thoroughness paid off, and we finally have a plan of how to treat all

>of

>my various symptoms.

>

>Don

Don,

Do I assume correctly that your Mayo visit is paid for by you, with no

recompense from insurance or otherwise?

/Shireen42@...

>

>

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

[Guest guest]

Don

I saw your article in July consumer report! I know you may have posted the

results of the Mayo visit - did you discover that you did not have AIH and

that it was possibly drug induced? I'm curious was it all from prednisone or

were you on blood pressure medicine before that may have caused damage? I'm

wondering because I had been on Depakote from my neurologist for treatment of

migranes and that drug can also cause liver damage. I do remember you

saying you found out you were diabetic-do you take insulin? I'm glad you

found a good treatment plan and now have answers. Do you follow up with him

again or your own hepatologist/GI?

Thanks

Susie

PS My appointment is on a Wednesday so I was hoping not to have to stay over

the weekend-they said plan on it though! Not too much fun by yourself! My

kids will be at their different camps so I guess that's a good time for me!

It's about 550 miles from IN to MN! Not looking forward to the drive!

[Guest guest]

Hi Susie,

The time frame really depends on the tests they want done and the

specialists they want you to see. I had appointments on 9 days, spanning 2

weekends. Two of those days were for a biopsy and a recovery day. Now, mine

was a particularly difficult case, and I wouldn't expect most to be so

involved. Mayo's web site says to plan on 4 to 5 days.

Dr Czaja has the reputation of being very thorough. When the receptionists

saw the size of my schedule they guessed it must be Czaja. But, in my case,

the thoroughness paid off, and we finally have a plan of how to treat all of

my various symptoms.

Don

[Guest guest]

Dear Don:

I saw the article, too! Congrats on being able to draw some attention to the

illness. It was a very informative article. As for the prednisone bloat,

you are not alone. In fact, you look just like me! Well, except for the

fact that I keep my mustache and chin whiskers shaved! LOL!

Hope you are doing well!

Kathy (AIH)

Seattle area

[Guest guest]

> Do I assume correctly that your Mayo visit is paid for by you, with no

> recompense from insurance or otherwise?

,

I've received three statements from Mayo totaling about $10,000. Since I

have great coverage from my wife's HMO, our only out of pocket is a $15

co-pay. All of the labs are covered 100%.

Don (AIH/ Minneapolis)

[Guest guest]

Thanks for all the info. Yes I saw your puffy face. I also just remembered

it said you were in printing sales. I worked in printing for 14 years before

I went back for nursing. I used to be a planner/estimator. After printing I

moved on to a company called Colwell Merchandising where I was an estimator

and I bought/priced printing and occasionally had to travel and do some press

checking-that was the fun part of my job-got me out of the office and away

from the computers and calculators! Colwell was a lot of hand pricing-very

tedious.

Do you ever wonder if some of the chemicals in the ink/coatings etc could

have affected our liver? I remember for years coming home and I could sense

the smell and taste of the plant all over me. Being in sales I'm not sure

how much time you spent near the presses, but as a planner I was almost

always out in the plant. Mainly I worked in sheetfed printing. I did a

short stint in Grand Rapids in a web shop-didn't care too much for newspaper

web shops. Small world. Do you ever anticipate going back to work. I'm off

also and my doctors here say I'm obscessed about work and not to right now.

Being a single mom and people ask what do you do-where do you work? So hard

to answer. I have a very long and complicated history so I'm sure Dr. Czaja

will have a field day with me. I'm not sure I'm up for it all! But I'm a

single mom with a 15 year old and 14 year old and they need me. My daughter

actually started her first job this summer! Guess? She washes cement trucks

with some of her buddies from school at Power Wash -just 2-3 hours a day-

26.00 a day. She's thrilled-she loves the dirt!

I have thought about Mall of AMerica-but I'm not the shopper-my daughter

is-but she'll be with her Dad that week. I may though since I'll most likely

be there the weekend.

[Guest guest]

> I saw your article in July consumer report!

How'd you like the puffy face?? Thanks prednisone!

> I know you may have posted the

> results of the Mayo visit - did you discover that you did not have AIH

and

> that it was possibly drug induced?

Dr Czaja isn't real sure. The biopsy looks more like a drug induced

hepatitis, but there was a three year time span between when I jaundiced and

when all of the blood tests pointed to AIH. He can't explain that...and

there is a rare variant of AIH that shows the same pattern on the biopsy.

So, we gradually stop prednisone and carefully watch the numbers.

> I'm curious was it all from prednisone or

> were you on blood pressure medicine before that may have caused damage?

Nope.

> I'm

> wondering because I had been on Depakote from my neurologist for

>treatment of

> migranes and that drug can also cause liver damage. I do remember you

> saying you found out you were diabetic-do you take insulin?

Yep, I do shots twice a day. Just controling my blood sugar seems to have

increased my energy level. I actually mowed our lawn, though I thought I was

going to die afterwards. My wife said I can never do that again! <g>

>I'm glad you

> found a good treatment plan and now have answers. Do you follow up with

him

> again or your own hepatologist/GI?

My PCP was having me see a rheumatologist rather than a GI, so I will be

following up with Dr. Czaja. It is only a couple hour drive from our house,

so it's not terribly inconvenient.

> Thanks

>

> Susie

>

> PS My appointment is on a Wednesday so I was hoping not to have to stay

>over

> the weekend-they said plan on it though! Not too much fun by yourself!

My

> kids will be at their different camps so I guess that's a good time for

me!

Come on up to the Twin Cities. You can always shop at Mall of America!

> It's about 550 miles from IN to MN! Not looking forward to the drive!

Once you are into Wisconsin, the drive is rather pleasant.

Don (AIH / Minneapolis)

[Guest guest]

>From: Roselle50@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Mayo appoitment

>Date: Thu, 1 Jul 1999 00:41:57 EDT

>MIME-Version: 1.0

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What magazine are you all talking about?

/shireen

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>

>From: Roselle50@...

>

>Don:

>

>I too saw the Comsumer Report with you in it. my daughter said you

>look

>good and that your face was not big from the prednisone.

>

>I have the short term disability at work but I used it all so they filed

>papers for the Long Term Disability.

>

>Time will tell.

>

>I had my husband Ron out tonight to get the magazine because I couldn't

>find

>one.

>We both agreed it was a very good article and my open some people eyes

>about

>AIH

>

>When I was in the ER tonght the nurse said you have hepatitis and I said

>no

>I have Autoimmune Hepatitis and she would not get it unless she was a

>relative. Then five mintures later she said again, you have Hepatitis.

>And

>again I said NO I have AIH.

>

>The doctor didn't know very much about AIH but he was very concern about my

>tests.

>So tomorrow I will find out what is in my system that is causing the

>problem.

>

>Well off to bed.

>

>Sue AIH

>Wisconsin

>

>PS Where to you live in Minneapolis? I live in Superior, WI on Lake

>Superior.

>

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

[Guest guest]

Don:

I too saw the Comsumer Report with you in it. my daughter said you look

good and that your face was not big from the prednisone.

I have the short term disability at work but I used it all so they filed

papers for the Long Term Disability.

Time will tell.

I had my husband Ron out tonight to get the magazine because I couldn't find

one.

We both agreed it was a very good article and my open some people eyes about

AIH

When I was in the ER tonght the nurse said you have hepatitis and I said no

I have Autoimmune Hepatitis and she would not get it unless she was a

relative. Then five mintures later she said again, you have Hepatitis. And

again I said NO I have AIH.

The doctor didn't know very much about AIH but he was very concern about my

tests.

So tomorrow I will find out what is in my system that is causing the problem.

Well off to bed.

Sue AIH

Wisconsin

PS Where to you live in Minneapolis? I live in Superior, WI on Lake Superior.

[Guest guest]

Don:

I too saw the Comsumer Report with you in it. my daughter said you look

good and that your face was not big from the prednisone.

I have the short term disability at work but I used it all so they filed

papers for the Long Term Disability.

Time will tell.

I had my husband Ron out tonight to get the magazine because I couldn't find

one.

We both agreed it was a very good article and my open some people eyes about

AIH

When I was in the ER tonght the nurse said you have hepatitis and I said no

I have Autoimmune Hepatitis and she would not get it unless she was a

relative. Then five mintures later she said again, you have Hepatitis. And

again I said NO I have AIH.

The doctor didn't know very much about AIH but he was very concern about my

tests.

So tomorrow I will find out what is in my system that is causing the problem.

Well off to bed.

Sue AIH

Wisconsin

PS Where to you live in Minneapolis? I live in Superior, WI on Lake Superior.

[Guest guest]

Where did you find the article on Don...I would be interested in reading it..

Thanks

Luanne Ty's mom

[Guest guest]

> What magazine are you all talking about?

>

I was interviewed for an article on disability insurance for the July issue

of Consumer Reports.

Don (AIH / Minneapolis)

[Guest guest]

Don:

Again I read your article in the Comsumer Report. I should have you

autograph it for me. Very interesting. I have long term disability at work

and trying to get it. It will cover me until I am 65. The owners of the

company I work for are really great people and were the one to start the

paper work on it.

Sue AIH

Wisconsin

[Guest guest]

>From: susan johnson <shireen42@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Mayo appoitment

>Date: Wed, 30 Jun 1999 21:45:22 PDT

>MIME-Version: 1.0

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>From: susan johnson <shireen42@...>

>

>

>

>

>>From: Roselle50@...

>>Reply- onelist

>> onelist

>>Subject: Re: [ ] Mayo appoitment

>>Date: Thu, 1 Jul 1999 00:41:57 EDT

>>MIME-Version: 1.0

>>From errors-165537-2416-shireen42 Wed Jun 30 21:42:39 1999

>>Received: from [209.207.164.205] by hotmail.com (1.5) with SMTP id

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>>Received: (qmail 30357 invoked by alias); 1 Jul 1999 04:42:18 -0000

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>

>

>What magazine are you all talking about?

>

>/shireen

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>>Mailing-List: list onelist; contact

>> -owneronelist

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>>List-Unsubscribe: <mailto: -unsubscribeONElist>

>>

>>From: Roselle50@...

>>

>>Don:

>>

>>I too saw the Comsumer Report with you in it. my daughter said you

>>look

>>good and that your face was not big from the prednisone.

>>

>>I have the short term disability at work but I used it all so they filed

>>papers for the Long Term Disability.

>>

>>Time will tell.

>>

>>I had my husband Ron out tonight to get the magazine because I couldn't

>>find

>>one.

>>We both agreed it was a very good article and my open some people eyes

>>about

>>AIH

>>

>>When I was in the ER tonght the nurse said you have hepatitis and I said

>>no

>>I have Autoimmune Hepatitis and she would not get it unless she was a

>>relative. Then five mintures later she said again, you have Hepatitis.

>>And

>>again I said NO I have AIH.

>>

>>The doctor didn't know very much about AIH but he was very concern about

>>my

>>tests.

>>So tomorrow I will find out what is in my system that is causing the

>>problem.

>>

>>Well off to bed.

>>

>>Sue AIH

>>Wisconsin

>>

>>PS Where to you live in Minneapolis? I live in Superior, WI on Lake

>>Superior.

>>

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

[Guest guest]

It is the July Consumer Report. You have to go to a good book store to get

one. I had looked at Target, Walmart, K-Mart and the bookstore in town until

my husband found it at a corner book store in town that must carry every

magazine that is printed and has been there for 50 years.

Great article and Don really look good. My daughter said I should grow

a beard.

Sue AIH

Wisconsin

[Guest guest]

Sue:

I will ask you the same things I asked Janelle. What are you claiming as your

disabling condition(s). What doctors are backing you up and what are they

saying? I spoke with my GP and though he would like to help me, thinks I have

a very slim chance of getting disability since I can sit and do a few things.

The problem is I can't do them for very long. I would really appreciate it if

you could give me information. Thanks

Kaye - AIH - Ohio

Roselle50@... wrote:

> From: Roselle50@...

>

> Don:

>

> Again I read your article in the Comsumer Report. I should have you

> autograph it for me. Very interesting. I have long term disability at work

> and trying to get it. It will cover me until I am 65. The owners of the

> company I work for are really great people and were the one to start the

> paper work on it.

>

> Sue AIH

> Wisconsin

>

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

[Guest guest]

Sue "

Are you working now? Part time? What do you do?

Thanks again

kaye - aih - ohio

Roselle50@... wrote:

> From: Roselle50@...

>

> Don:

>

> Again I read your article in the Comsumer Report. I should have you

> autograph it for me. Very interesting. I have long term disability at work

> and trying to get it. It will cover me until I am 65. The owners of the

> company I work for are really great people and were the one to start the

> paper work on it.

>

> Sue AIH

> Wisconsin

>

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

[Guest guest]

KAYE: YOU PROBABLY READ THE LETTER TO JANELLE BUT I WILL LIST THE REASONS.

ALSO THIS IS LONG TERM DISABILITY AT WORK AND WILL PAY UNTIL I AM 65 OR THE

OTHER...

1. AIH

2. DEPRESSION

3. WORK ONLY 4 HOURS

4. SIT ONE HOUR AT A TIME

5. WALK ONE HOUR WITH REST

6. L;IFT ONLY 10 POUNDS.

IN READING THE ARTICLE ABOUT DON IN THE CONSUMER REPORT I THINK THAT

DEPRESSION WAS ONE REASON HE GOT SSI. I KNOW THAT WHEN YOU HAVE THINGS

STRATING TO GO THE WAY YOU WANTED AND THEN GET SICK WITH A CHRONIC ILLNESS IT

WILL BE DEPRESSION. I WAS REALLY HAVING MY LIFE TURN AROUND BECAUSE MY

HUSBAND GOT THE JOB AS BUSINESS AGENT IN THE LABOR UNION HE HAS WORKED OUT OF

FOR 25 YEARS. THINGS WERE LOOKING UP WITH MONEY ETC. AND BOOM I GET SICK.

SUE AIH

WISCONSIN

PS ASK ANY QUESTIONS YOU WANT. WE WILL ANSWER.

[Guest guest]

KAYE;

I AM WORKING 4 HOURS A DAY. NOW AT NIGHT BECAUSE OF THE RELAPES IN MAY UNTIL

MY NUMBERS GO DOWN. I CAN NOT TAKE STRESS AND DOCTOR DOESN'T WANT ME TO BE

IN THE SITUATION OF THE DAILY STRESS OF WORKING.

I'M AN ACCOUNTS PAYMENT CLERK AT SARATOGA LIQUOR. WE ARE A WHOLESALE LIQUOR

AND WINE COMPANY THAT SELL THE PRODUCTS TO THE LIQUOR STORES AND BARS.

I HAVE BEEN THERE FOR 11 1/2 YEARS . ALWAYS BE VERY DEVOTED WORKER. WORKED

MY WEEKENDS AND LONG HOURS BEFORE I GOT SICK.

SUE AIH

WISCONSIN

[Guest guest]

Can someone please tell me how to get the magazine you are talking about. I

picked up the July 1999 issue of Consumer Reports and cannot find any article in

there. Do I have the right magazine?

Thanks.

Roselle50@... wrote:

> From: Roselle50@...

>

> Don:

>

> I too saw the Comsumer Report with you in it. my daughter said you look

> good and that your face was not big from the prednisone.

>

> I have the short term disability at work but I used it all so they filed

> papers for the Long Term Disability.

>

> Time will tell.

>

> I had my husband Ron out tonight to get the magazine because I couldn't find

> one.

> We both agreed it was a very good article and my open some people eyes about

> AIH

>

> When I was in the ER tonght the nurse said you have hepatitis and I said no

> I have Autoimmune Hepatitis and she would not get it unless she was a

> relative. Then five mintures later she said again, you have Hepatitis. And

> again I said NO I have AIH.

>

> The doctor didn't know very much about AIH but he was very concern about my

> tests.

> So tomorrow I will find out what is in my system that is causing the problem.

>

> Well off to bed.

>

> Sue AIH

> Wisconsin

>

> PS Where to you live in Minneapolis? I live in Superior, WI on Lake Superior.

>

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

[Guest guest]

Sue " :

Thank you so much for your offer to answer questions re: disability. I plan to

take you up on it.

kaye - aih - ohio

Roselle50@... wrote:

> From: Roselle50@...

>

> KAYE: YOU PROBABLY READ THE LETTER TO JANELLE BUT I WILL LIST THE REASONS.

> ALSO THIS IS LONG TERM DISABILITY AT WORK AND WILL PAY UNTIL I AM 65 OR THE

> OTHER...

>

> 1. AIH

> 2. DEPRESSION

> 3. WORK ONLY 4 HOURS

> 4. SIT ONE HOUR AT A TIME

> 5. WALK ONE HOUR WITH REST

> 6. L;IFT ONLY 10 POUNDS.

>

> IN READING THE ARTICLE ABOUT DON IN THE CONSUMER REPORT I THINK THAT

> DEPRESSION WAS ONE REASON HE GOT SSI. I KNOW THAT WHEN YOU HAVE THINGS

> STRATING TO GO THE WAY YOU WANTED AND THEN GET SICK WITH A CHRONIC ILLNESS IT

> WILL BE DEPRESSION. I WAS REALLY HAVING MY LIFE TURN AROUND BECAUSE MY

> HUSBAND GOT THE JOB AS BUSINESS AGENT IN THE LABOR UNION HE HAS WORKED OUT OF

> FOR 25 YEARS. THINGS WERE LOOKING UP WITH MONEY ETC. AND BOOM I GET SICK.

>

> SUE AIH

> WISCONSIN

>

> PS ASK ANY QUESTIONS YOU WANT. WE WILL ANSWER.

>

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

[Guest guest]

Hi Kaye,

You have the right one. Page 64 starts an article on disability insurance.

The first couple of paragraphs are about me and the picture of the guy with

the prednisone cheeks is me.

Don

[Guest guest]

Kaye:

It is the July 1999 Consumer Report and also has ratings on vaccuum cleaners

(I just bought a new one) and the article is way in the back almost to the

end of the book.

Sue AIH

Wisconsin