Sherry

[Guest guest]

Hi Sherry..these feelings you have about the hep.would you tell me about

them? I'm having a problem holding everything inside and not knowing what is

hep related or am I going nuts? I'm also suppose to be starting treatment

soon but everything seems to move so slow from one doctor to the

next..thankz.judy

[Guest guest]

Hi Sherry..these feelings you have about the hep.would you tell me about

them? I'm having a problem holding everything inside and not knowing what is

hep related or am I going nuts? I'm also suppose to be starting treatment

soon but everything seems to move so slow from one doctor to the

next..thankz.judy

[Guest guest]

Our symptoms sound so much alike..I hurt in my liver area for more than 25

years. The doctors always thought gallbladder and would test me. When the

gallbladder studies came back normal.no more was done.like the pain was in

my head or something. The tiredness, fatigue, I can remember nothing else so

to me it's normal. I always thought I was just being lazy and would push

myself harder to do the things I wanted to do.care for my family and go to

nursing school and working. It would all accumulate and come out as

frustration and anger at myself.

What stage are you in? I'm at the stage just before cirrhosis or what they

might call pre cirrhosis. There were 2 small nodules that were not malignant

and we are to biopsy again in 6 months to check them. I am waiting now for

my gastroenterologist to send a representative down to my family doctor to

train them to train me to give myself the shots and such. This is kind of

silly with me being a RN.I know how to give shots.but they say they must

follow protocol.

Have you got any spider anginomias on your body? I have them on my chest

and neck. The doctor says it is from the liver problems. I've had them for

years.

Thanks for writing..take care.judy

[Guest guest]

Our symptoms sound so much alike..I hurt in my liver area for more than 25

years. The doctors always thought gallbladder and would test me. When the

gallbladder studies came back normal.no more was done.like the pain was in

my head or something. The tiredness, fatigue, I can remember nothing else so

to me it's normal. I always thought I was just being lazy and would push

myself harder to do the things I wanted to do.care for my family and go to

nursing school and working. It would all accumulate and come out as

frustration and anger at myself.

What stage are you in? I'm at the stage just before cirrhosis or what they

might call pre cirrhosis. There were 2 small nodules that were not malignant

and we are to biopsy again in 6 months to check them. I am waiting now for

my gastroenterologist to send a representative down to my family doctor to

train them to train me to give myself the shots and such. This is kind of

silly with me being a RN.I know how to give shots.but they say they must

follow protocol.

Have you got any spider anginomias on your body? I have them on my chest

and neck. The doctor says it is from the liver problems. I've had them for

years.

Thanks for writing..take care.judy

[Guest guest]

Hi Sherry, this is Dr. O'Brien phone # 605-357-3840 or 605-357-3861. I will

tell you that Dr. O. has suspended surgeries until further notice. My

understanding is they.ve been having problems for the last week and suspect

there may be a defect in the equipment they're using. until they investigate

further they've put a halt to surgery.

Pat P

[Guest guest]

Hi Sherry: I have to agree with you on that! I

suffer from chronic headaches and sometimes migraines.

I hate those almost as much as the fatigue that this

creepy dragon causes. I havent heard from you in a

while...Its nice to have you back.

Love in His Light

Sandy

__________________________________________________

[Guest guest]

Hi Sherry: I have to agree with you on that! I

suffer from chronic headaches and sometimes migraines.

I hate those almost as much as the fatigue that this

creepy dragon causes. I havent heard from you in a

while...Its nice to have you back.

Love in His Light

Sandy

__________________________________________________

[Guest guest]

Thanks Judy. I feel pretty good this morning. Got up around 7:30 AZ

time. I have a slight headache so far, but I think it is just me

stressing out & worrying about the side effects. I will take a couple

tylenol in a few and I promissed myself that I was going to worry

about the sides. If I get them, I get them! If they are to much to

handle, then I will call the Doc., but I want to think positively. I

am glad that I am doing ok today cause me & are suppose to be

making homemade bread & pizza..we don't use a bread machine. My hubby

asked if I wanted one, I told him half the fun of making it is

playing with the dough (I love the smell of it raising & in the

oven). I love to bake so I am hoping that I have enough energy for

the holiday baking so that don't get to have all the fun (lol).

Talk to you all later.

May God Bless you & keep you safe.

Sherry Lynn

> I'm praying you are one of the lucky ones and won't have terrible

side

> effects......I'll be thinking of you.....keep us informed...we all

> care....love....judy

>

>

>

[Guest guest]

Sherry,I've been trying to find out actually what quinine is but haven't

found out to much. Dictionary refers to it as alkaloid and then states

used for people who have had malaria. I work for a family who the

father once had malaria. He is always drinking tonic water. They are away

now, but, when they come back, I'll surely find out why from him. I

started drinking tonic water again the other day and I do feel better. My

weakness is improved but not totally gone. But, yesterday afternoon, it

went away totally, but, back again this morning. I like the tonic water

with lime. I hate it's so carbonated. I never was a soda drinker because

of it. I have been trying to find out if there are other things with the

quinine. I forget what Placquinil is. Haven't had a chance to try and

get this in medication form. I have to go to the drug store today. I have

a list of meds I want to get information on. Maybe I'll be able to find

out more on the quinine. Take Care! -NH PS - Sounds like

you have your diet pretty good. I need some ideas for dinners. (easy

ones)

[Guest guest]

Jan, keeping yourself free from outside activities is not selfish. It is life saving! Sometimes it is important that we save ourselves from ourselves! At least, I have had to do that! Keep up the good work!

Debby

[ ] Sherry

Hi Sherry....great that youve got something for the pain. Debby's right about the painkillers, some make you tired. All depends if you were tired beforehand or not. Pain on its own is very tiring. If its not these things and you feel completely exhausted...I found I had to do some 'social housecleaning' meaning Im no longer involved in any activity outside the home that I can do without. In other words I save my energy on things that are only important to me and my family. Sounds selfish but its necessary otherwise Id be constantly pooped & no good to anyone. Look at your diet carefully and eat foods that are only of benefit to you (says me who devoured 2 creamdoughnuts this afternoon). Like you, I would want another blood test further down the track when I know they wouldnt be influenced by the steroids just for peace of mind. Great that you dont have to pay for your medical bills...it sounds very complicated to me. Welcome also to the high cholesterol club ! Take care now and dont do anything I wouldnt do !

Love Jan

[Guest guest]

In a message dated 9/24/2003 4:48:50 AM Eastern Standard Time, cholesteatoma writes:

I still haven't heard anything about Mostoid removal on this site That is

what they are wanting to do to me now. Is there anywhere else I might get

some information about this. Thanks in advance for any help.

Sherry

Hello all. I'm not sure what you mean, Sherry, & I see you've gotten some very fine replies but it did ring a little bell. There is something called "mastoid obliteration" or something like that, where they basically just get rid of your mastoid. It is not common & I don't know if anyone on our list has had it done but it does exist. Type "mastoid obliteration" into a search engine if you are curious (one site offered a CD-ROM of the surgery for $20!!!)

[Guest guest]

Thank You very much. I am really scared and you would think after 11

surgerys I would be use to it but I think it gets worst (the dread and fear)

with everyone. does it ever end?

sherry

>From: rlockw1092@...

>Reply-cholesteatoma

>cholesteatoma

>Subject: Re: Sherry

>Date: Wed, 24 Sep 2003 07:38:10 EDT

>

>In a message dated 9/24/2003 4:48:50 AM Eastern Standard Time,

>cholesteatoma writes:

>

>

> > I still haven't heard anything about Mostoid removal on this site That

>is

> > what they are wanting to do to me now. Is there anywhere else I might

>get

> > some information about this. Thanks in advance for any help.

> > Sherry

> >

>

>Hello all. I'm not sure what you mean, Sherry, & I see you've gotten some

>very fine replies but it did ring a little bell. There is something called

> " mastoid obliteration " or something like that, where they basically just

>get rid of

>your mastoid. It is not common & I don't know if anyone on our list has had

>it

>done but it does exist. Type " mastoid obliteration " into a search engine if

>you are curious (one site offered a CD-ROM of the surgery for $20!!!)

>

>

_________________________________________________________________

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[Guest guest]

Sherry - 11 surgeries?? Why so many...how long have you been

battling with this?

> Thank You very much. I am really scared and you would think after

11

> surgerys I would be use to it but I think it gets worst (the dread

and fear)

> with everyone. does it ever end?

> sherry

>

>

> >From: rlockw1092@a...

> >Reply-cholesteatoma

> >cholesteatoma

> >Subject: Re: Sherry

> >Date: Wed, 24 Sep 2003 07:38:10 EDT

> >

> >In a message dated 9/24/2003 4:48:50 AM Eastern Standard Time,

> >cholesteatoma writes:

> >

> >

> > > I still haven't heard anything about Mostoid removal on this

site That

> >is

> > > what they are wanting to do to me now. Is there anywhere else I

might

> >get

> > > some information about this. Thanks in advance for any help.

> > > Sherry

> > >

> >

> >Hello all. I'm not sure what you mean, Sherry, & I see you've

gotten some

> >very fine replies but it did ring a little bell. There is

something called

> > " mastoid obliteration " or something like that, where they

basically just

> >get rid of

> >your mastoid. It is not common & I don't know if anyone on our

list has had

> >it

> >done but it does exist. Type " mastoid obliteration " into a search

engine if

> >you are curious (one site offered a CD-ROM of the surgery for

$20!!!)

> >

> >

>

> _________________________________________________________________

> Get McAfee virus scanning and cleaning of incoming attachments.

Get Hotmail

> Extra Storage! http://join.msn.com/?PAGE=features/es

[Guest guest]

I am 42 and had my 1st surgery at the age of 6. I have had 4 ctoma and 4

2nd looks 2 attempts at reconstruction and the rest have been to replace the

ear drum. Now a mastoid removal and from the look of this site I think

Instead of trying to fix my hearing over the years maybe they should of just

gave me a safe ear. The thing is my nerves are still good and they keep

thinking they can fix it. but hell they cant even give me 1 year with out a

ear infection. Thanks, for all your support this site is great in all this

time i have never met or talk with anyone who had the same problem as me.

sherry

>From: " Melody " <melodyreilly@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: Re: Sherry

>Date: Thu, 25 Sep 2003 23:32:36 -0000

>

>Sherry - 11 surgeries?? Why so many...how long have you been

>battling with this?

>

>

>

>

>

> > Thank You very much. I am really scared and you would think after

>11

> > surgerys I would be use to it but I think it gets worst (the dread

>and fear)

> > with everyone. does it ever end?

> > sherry

> >

> >

> > >From: rlockw1092@a...

> > >Reply-cholesteatoma

> > >cholesteatoma

> > >Subject: Re: Sherry

> > >Date: Wed, 24 Sep 2003 07:38:10 EDT

> > >

> > >In a message dated 9/24/2003 4:48:50 AM Eastern Standard Time,

> > >cholesteatoma writes:

> > >

> > >

> > > > I still haven't heard anything about Mostoid removal on this

>site That

> > >is

> > > > what they are wanting to do to me now. Is there anywhere else I

>might

> > >get

> > > > some information about this. Thanks in advance for any help.

> > > > Sherry

> > > >

> > >

> > >Hello all. I'm not sure what you mean, Sherry, & I see you've

>gotten some

> > >very fine replies but it did ring a little bell. There is

>something called

> > > " mastoid obliteration " or something like that, where they

>basically just

> > >get rid of

> > >your mastoid. It is not common & I don't know if anyone on our

>list has had

> > >it

> > >done but it does exist. Type " mastoid obliteration " into a search

>engine if

> > >you are curious (one site offered a CD-ROM of the surgery for

>$20!!!)

> > >

> > >

> >

> > _________________________________________________________________

> > Get McAfee virus scanning and cleaning of incoming attachments.

>Get Hotmail

> > Extra Storage! http://join.msn.com/?PAGE=features/es

>

_________________________________________________________________

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http://join.msn.com/?page=dept/byoa

[Guest guest]

Hey Sherry, Your doctor was one of the names mentioned to me. My appointment for echo is for December 11, 2003, at 11:00. I am moving to a condo here in Richmond. Less space to have to keep clean and no maintenance, since my 18 year old son will soon be looking at 4 year colleges. He is current in community college trying to get his GPA up. My daughter graduates from Tech on the 19th of December. Maybe we can all get together over that weekend. I'll be talking to Cheryl and Randy and see if this works for them.

Let you know.

[Guest guest]

Sherry,

My appointment has changed from the 11th to the 16th. They are doing both the echo and the transplant eval on that date. It's a Tuesday. I have no idea how long it will take but if you can meet up with us my Mom and I usually stop for dinner before we start home. E-mail me directly and maybe we can trade phone #'s. I'd love to meet you.

[Guest guest]

I only have a few mins tonight so I'll be brief. I read your post and didn't know if you had thought about having the biopsy slide read by another pathologist. I know when I go in at UVA they have discussed my case and the last time I walked in the nurse told me the decision had already been made to send me over for transplant evaluation. (Something we had discussed and my Hepatologist was wavering back and forth about. The development of ascites was the thing that convinced them it was time.).

I know that when my first and only liver biopsy was done in 1999 the local GI doc had the pathologist read it in the hospital it was done at, it was then sent to MCV and read by their pathologist and when I was referred to UVA the Hepatologist I saw up there asked that I bring the slides and they were read at UVA. All 3 hospitals and 3 different pathologist were in agreement. This can be done and I would mention to your doctor at UVA you would like to have someone else read it also. The slides are kept. Maybe a 2nd opinion on the biopsy slide would make you feel more confident.

Just a thought. I'm sorry your have having such a difficult time and hope you get to the bottom of what's going on. The diagnosis of AIH can be difficult. If I can help in any way please contact me directly at MKantzle@....

I forgot to mention my ANA is normal also, however based on the biopsy and my response to prednisone the diagnosis of AIH has been made. This may not be the case for you but if you are concerned I would ask if another pathologist could look at the slides. What could it hurt?

[Guest guest]

Sherry,

can't type a lot cause my hand is still healing. I have lupus (diagnosed in Oct 96), antiphospholipid syndrome (diag Jul 02), AIH (diag Jan 03), type II diabetes (diag Jan 03), and chronic pancreatitis (diag Jun 03). For years my ANA was positive (ranged from positive at 1:80 to 1:320), but it was negative the last time (or two) it was checked. My rheumy says that's because the plaquenil I take for lupus is doing what it should do. I would think that the steriods could also make your ANA negative. I don't know that for a fact, I'm just trying to think logically. I think that in addition to the hep, you really should consider seeing a good rheumatologist. Autoimmune diseases are tricky and often very hard to diagnose. It often takes a doctor who is willing to do a lot of digging and homework to put the whole picture together. Even without meds, the ANA can be negative on occasion in a person who typically has a positive ANA. Depending on how many times your ANA has been checked, they may have just checked it at a time that it happened to be negative.

Try to hang in there and demand that the doctors give you answers that at least seem to have some logic to them!

W

[Guest guest]

Hi Sherry, Thanks for all the information regarding the holistic approach to this AIH disease. I was diagnosed with celiac disease shortly after the AIH diagnosis and so have really been on the wheat free and gluten free diet for over a year. Now, I would really like to get off or at least drop down on the Mg. of the the steroids and immunesuppresants (imuran). The Dr. has me going up and down on these drugs trying to find what he says will be the right combination to control the AIH. Are you on a low dose of the prednisone and have you ever had to be on the imuran.

Thanks again for all the information. I am going to try and find a good Naturopathic Dr. Wish me luck!

Happy New Year!!

Shirlee (Wa State)

[Guest guest]

The journal tells a lot about how I am doing with my implant in it's second

half. Ok, no problem I will talk about it here!

A typical week lately has been like this: I wake up in the morning for class

and put on my implant. I can hear the birds singing in the morning on my way

to the subway station. I leave the implant off for the subway because I am

tired of hearing all that useless noise. I get to class and I find that some

people don't speak up loud enough. When this happens I use the Whisper setting

to raise up their voices. During break or lunch time everyone is talking but

I can hear just fine. If I am in a particularly loud crowd then I can turn

the sensitivity wheel down and hear the people standing closest to me very well

and not hear the people who are farther away in the room. I am finally able

to take notes without having to lipread so intently! Sometimes I take my CD

player with me and listen to my music (with those big Bose headphones!) while I

am walking back to the subway or just walking around Manhattan because I like

to. If there is an announcement on the subway to change trains, I can

understand it often, but not always. If I watch TV at night, I can do so

without

captions but I usually choose to keep them on.

On the weekends, I sometimes like to go to an early Saturday morning matinee

movie. I can hear the movies just fine without anything to have to plug into!

I will be seeing The Producers in September as an open captioned production.

I'll be able to read the captions and also hear the words and lyrics which

means I don't miss a thing! If I go to a bar, which I rarely do anymore, I do

pretty well in all that noise either using the autosensitivity or reducing the

sensitivity.

None of any of this was possible before my implant because I had slowly lost

all of my high frequencies from the age of 12 to 39. It was the best decision

I have ever made!

N24C

2000

In a message dated 8/20/2004 11:54:13 PM Eastern Standard Time,

phillipssl@... writes:

Right now if you don't mind I would like to just read how you all

are doing with your CI's.

[Guest guest]

I am confused. When in noisy places do we turned the sensitivity up and

volume down or is it the reverse?

Re: Sherry

> The journal tells a lot about how I am doing with my implant in it's

second

> half. Ok, no problem I will talk about it here!

>

> A typical week lately has been like this: I wake up in the morning for

class

> and put on my implant. I can hear the birds singing in the morning on my

way

> to the subway station. I leave the implant off for the subway because I am

> tired of hearing all that useless noise. I get to class and I find that

some

> people don't speak up loud enough. When this happens I use the Whisper

setting

> to raise up their voices. During break or lunch time everyone is talking

but

> I can hear just fine. If I am in a particularly loud crowd then I can

turn

> the sensitivity wheel down and hear the people standing closest to me very

well

> and not hear the people who are farther away in the room. I am finally

able

> to take notes without having to lipread so intently! Sometimes I take my

CD

> player with me and listen to my music (with those big Bose headphones!)

while I

> am walking back to the subway or just walking around Manhattan because I

like

> to. If there is an announcement on the subway to change trains, I can

> understand it often, but not always. If I watch TV at night, I can do so

without

> captions but I usually choose to keep them on.

>

> On the weekends, I sometimes like to go to an early Saturday morning

matinee

> movie. I can hear the movies just fine without anything to have to plug

into!

> I will be seeing The Producers in September as an open captioned

production.

> I'll be able to read the captions and also hear the words and lyrics

which

> means I don't miss a thing! If I go to a bar, which I rarely do anymore,

I do

> pretty well in all that noise either using the autosensitivity or reducing

the

> sensitivity.

>

> None of any of this was possible before my implant because I had slowly

lost

> all of my high frequencies from the age of 12 to 39. It was the best

decision

> I have ever made!

>

> N24C

> 2000

> In a message dated 8/20/2004 11:54:13 PM Eastern Standard Time,

> phillipssl@... writes:

> Right now if you don't mind I would like to just read how you all

> are doing with your CI's.

>

>

>

[Guest guest]

I turn the sens down in noisy places because the noise is interfering with

the close people to whom I am listening. I turn the sens up in quiet when I

can't hear the soft speaker well enough or they are far away, i.e like in a

lecture hall or on stage. Whisper works well for that too.

In a message dated 8/21/2004 7:07:53 PM Eastern Standard Time,

wdywms@... writes:

I am confused. When in noisy places do we turned the sensitivity up and

volume down or is it the reverse?

[Guest guest]

SO does that mean you calm our tummies too???? lol

[Guest guest]

Oh no Carolyn, have you caught Pepto Deb's font disease? You look pink!

> LIFE IS GREAT!!!!!!! I'm able to eat foods I haven't been able to in

> years. The first few weeks after my surgery were rough but it has been

> worth it.Thanks for all your prayers and good wishes.It's been a long

> bumpy road and I hope I'm getting close to the end.

> Sherry

>

>

>

>

>

>

>

[Guest guest]

For the record, my font disease is a pinkish color (Microsoft calls it "fuchsia" but I don't think it looks fuchsia at all!), and Carolyn's is more of a plum color.... hee hee hee

Pepto Deb, just for clarification purposes! ;o)

Oh no Carolyn, have you caught Pepto Deb's font disease? You look pink!

That is so wonderful to hear! I am so happy for you! You go girl!!!

Carolyn mom of Cameron in CA