Harper

[Guest guest]

Harper, this a good question. It's not me that has AIH it's my daughter,

Jodi. She is in the process of having all the test for being put on the

transplant list. We are exploring the possibility of me being a living donor

only if a regular transplant does not come in a reasonable amount of time. I

will leave that up to the transplant team to decide. Take care and take it

slow trying to soak in all of this info. Genny/Jodi's Mom/Fl

[Guest guest]

Hi Harper, thanks for the well wishes for me and Jodi. Yes, you may read

post from Cheryl and Randy from time to time. Cheryl gave her husband Randy

60% of her liver one year ago this month and he seems to be doing very well.

Cheryl's liver grew back in about four weeks and the portion she gave Randy

grew to the size he needed in about six. This type of transplant isn't done

every day but Cheryl tells me Cleveland has done nine so far. My first

question to the transplant team in Miami will be how many they have done.

Jodi and I will not jump into this but want to see if I'm a match just in

case a liver does not become available before she gets to ill. Will know a

lot more about it when we return from Miami as we are going down the 19th.

and 20th. for classes. Nice talking to you, Genny/Jodi's Mom/Fl

[Guest guest]

You say citing the message, I don't know how to do that like I have seen you

do. Haven't had the computer very long. Genny

[Guest guest]

In a message dated 12/15/00 1:09:03 PM Pacific Standard Time, mclaffey@... writes:

I was diagnosed two years ago in Nov. The hardest part for me has been

the fatigue. When I would go to the gym in the morning by 11:00 am I

had felt like I worked 3 jobs. I spent many an afternoon in tears

because I couldn't figure out how I would get through the rest of the

day. I have an 8yr old and 5 yr. old, and I would have rather been dead

than say I was too tired to do something. So I struggled and did

everything but everyday was an uphill battle.

Well two years later I have much more energy than I did in the

beginning. I now go to the gym and still have energy left for the day. The moral of this story is take things slow and it might take time but

your energy will pick up as your levels improve. It took me two years I

am now 34. I did gain 20 lbs from the steroids I have managed to lose

most, slowly of course. When you feel well, conquer the world and when your not feeling your

best, remember tomorrow will be better.

Joan Claffey

Thanks, Joan. I keep trying to decide whether I should do the very most I can (which was my mode of operation in my "Previous Life" or to do only what feels comfortable at the time -- and run the risk that I'm being self-indulgent, wasting opportunities. I just don't know, truly. Again, I'm impressed by your having successfully managed the responsibility of children while dealing with this.

Harper

[Guest guest]

Harper: Thanks for the well wishes for me and Jodi. Take care and God

bless, Genny

[Guest guest]

In a message dated 1/13/01 11:13:24 PM Pacific Standard Time, lrb@... writes:

.. Do you know if the blurry vision from the pred. goes away?

No, I don't know. (I had an eye exam back in August, asking about cataracts/glaucoma, but I wasn't having any vision problems then, so I didn't know to ask about it. I don't really have any serious problem now.)

Harper AIH 5/00

[Guest guest]

i lost my left eye vision for about 1 month but it did come back. I went to the eye doctor and he could not find a reason, so we decided it was from the steroids. I still get blurry vision at times.

Bobbie

Re: [ ] Harper

In a message dated 1/13/01 11:13:24 PM Pacific Standard Time, lrb@... writes:

.. Do you know if the blurry vision from the pred. goes away? No, I don't know. (I had an eye exam back in August, asking about cataracts/glaucoma, but I wasn't having any vision problems then, so I didn't know to ask about it. I don't really have any serious problem now.) Harper AIH 5/00

[Guest guest]

Harper: You seem to eat very strange things. LOL Genny

[Guest guest]

In a message dated 2/3/01 7:34:46 PM Pacific Standard Time, Babycolt98102690@... writes:

Harper: You seem to eat very strange things. LOL Genny

(Warning, after I wrote this below -- it's just personal rambling, no useful information, so don't waste your time if you're in a hurry, but I've written, so I'll send.)

Huh? I don't remember talking about anything I ate, on-line -- remind me (brain fog is SUCH a good excuse.) I guess I have eaten strange things from time to time, depending on where I was and what was available and how hungry I was and how broke. When working long hours on my last job, across from a sandwiches-and-bait shop, I became very fond of Hostess Snowballs and a Coke, bought just before the store closed for the night, to take back to my desk and get me through the midnight hours. Earlier, I learned how best to shop for camel meat in open-air, fly-frequented markets. Stewed chickens with their heads left on didn't appeal in Hong Kong, nor did sea cucumber (sort of a big hollow slug) but I ate them politely. Sheep's eyeballs at Easter in Greece I graciously gave back to my host, saying I didn't deserve the honor.

Tiny translucent eels with big blue eyes, fried, taste quite good if you don't look at them too long. Thin, ice-cold slices of raw beef with lemon and capers (beef carpaccio) was lovely on hot nights in Rome, but my husband got toxoplasmosis from it (hasn't hurt him so far). I drew the line at fermented shark in Iceland, after a few bites -- it tasted strongly of pee, to me. I did become quite fond of the dried raw cod, to be eaten like candy. Then there was the plate of fried bulls' balls and intestines in a very spiffy restaurant in Mexico City -- the intestines came in short lengths, tied into bows.

Now, nothing tastes better than really good pure unsalted peanut butter from the corner store, used in small amounts with the oil drained off on really good bread. That's breakfast and often lunch, with an apple added and non-fat milk. Not the best thing to eat often, nutritionally, but it's easy, and that counts for a whole lot some days, doesn't it.

Tonight my husband is in town and is cooking spaghetti. Yummm!

Harper

[Guest guest]

Hi Harper,

Yuck, yuck and more yuck. And how do you know what pee tastes like? What

did you do that you traveled so much. It must have been exciting. I've been

to Mexico and Canada once. I didn't eat any weird stuff there though. I

haven't traveled much at all. Heck, I lived in Arizona for ten years and I

STILL haven't seen the Grand Canyon. Now I'm in NC and haven't been to the

beach yet.

Thanks for the kind words earlier. I don't think you are a voyeur. I love

listening to people's stories too. It helps keep us human to hear the highs

as well as the lows. I just didn't know if anyone wanted to hear my misc.

woes or trivial info. Of course, if it wasn't for the trivial stuff, life

wouldn't be as rich. I know what you mean about just being a bunch of lab

work to doctors. I have been struggling with doctors for years. Now I know

why they call it " practicing " medicine. Before I was diagnosed with Lupus,

I thought I would scream if one more doctor told me I was too young to have

problems, that it must be all be in my head (nevered bothered with blood

tests), they said I should see a psychiatrist. Tommy would never have been

diagnosed with AIH so fast if it wasn't for my pediatrician insisting upon

a test to find out if he had A, B, or C hepatitis before he was discharged.

The hospital just assumed it was A. When they all came back as negatives,

they started investigating further. I'm just praying we caught it early. I

guess the biopsy will tell us.

Debbie (Tommy's Mom)

> [Original Message]

> From: <flatcat9@...>

> < >

> Date: 2/3/01 10:58:35 PM

> Subject: Re: [ ] Harper

>

> In a message dated 2/3/01 7:34:46 PM Pacific Standard Time,

> Babycolt98102690@... writes:

>

>

> > Harper: You seem to eat very strange things. LOL

> (Warning, after I wrote this below -- it's just personal rambling, no

useful

> information, so don't waste your time if you're in a hurry, but I've

written,

> so I'll send.)

>

> Huh? I don't remember talking about anything I ate, on-line -- remind

me

> (brain fog is SUCH a good excuse.) I guess I have eaten strange things

from

> time to time, depending on where I was and what was available and how

hungry

> I was and how broke. When working long hours on my last job, across from

a

> sandwiches-and-bait shop, I became very fond of Hostess Snowballs and a

Coke,

> bought just before the store closed for the night, to take back to my

desk

> and get me through the midnight hours. Earlier, I learned how best to

shop

> for camel meat in open-air, fly-frequented markets. Stewed chickens with

> their heads left on didn't appeal in Hong Kong, nor did sea cucumber

(sort of

> a big hollow slug) but I ate them politely. Sheep's eyeballs at Easter

in

> Greece I graciously gave back to my host, saying I didn't deserve the

honor.

> Tiny translucent eels with big blue eyes, fried, taste quite good if you

> don't look at them too long. Thin, ice-cold slices of raw beef with

lemon

> and capers (beef carpaccio) was lovely on hot nights in Rome, but my

husband

> got toxoplasmosis from it (hasn't hurt him so far). I drew the line at

> fermented shark in Iceland, after a few bites -- it tasted strongly of

pee,

> to me. I did become quite fond of the dried raw cod, to be eaten like

candy.

> Then there was the plate of fried bulls' balls and intestines in a very

> spiffy restaurant in Mexico City -- the intestines came in short lengths,

> tied into bows.

>

> Now, nothing tastes better than really good pure unsalted peanut butter

from

> the corner store, used in small amounts with the oil drained off on

really

> good bread. That's breakfast and often lunch, with an apple added and

> non-fat milk. Not the best thing to eat often, nutritionally, but it's

easy,

> and that counts for a whole lot some days, doesn't it.

>

> Tonight my husband is in town and is cooking spaghetti. Yummm!

>

> Harper

>

--- Have a fun day!

--- debbiehenry@...

---

[Guest guest]

Debbie Henry wrote:

> Hi Harper,

>

> Yuck, yuck and more yuck. And how do you know what pee tastes like? What

> did you do that you traveled so much. It must have been exciting. I've been

> to Mexico and Canada once. I didn't eat any weird stuff there though. I

> haven't traveled much at all. Heck, I lived in Arizona for ten years and I

> STILL haven't seen the Grand Canyon. Now I'm in NC and haven't been to the

> beach yet.

>

> Thanks for the kind words earlier. I don't think you are a voyeur. I love

> listening to people's stories too. It helps keep us human to hear the highs

> as well as the lows. I just didn't know if anyone wanted to hear my misc.

> woes or trivial info. Of course, if it wasn't for the trivial stuff, life

> wouldn't be as rich. I know what you mean about just being a bunch of lab

> work to doctors. I have been struggling with doctors for years. Now I know

> why they call it " practicing " medicine. Before I was diagnosed with Lupus,

> I thought I would scream if one more doctor told me I was too young to have

> problems, that it must be all be in my head (nevered bothered with blood

> tests), they said I should see a psychiatrist. Tommy would never have been

> diagnosed with AIH so fast if it wasn't for my pediatrician insisting upon

> a test to find out if he had A, B, or C hepatitis before he was discharged.

> The hospital just assumed it was A. When they all came back as negatives,

> they started investigating further. I'm just praying we caught it early. I

> guess the biopsy will tell us.

>

> Debbie (Tommy's Mom)

>

> > [Original Message]

> > From: <flatcat9@...>

> > < >

> > Date: 2/3/01 10:58:35 PM

> > Subject: Re: [ ] Harper

> >

> > In a message dated 2/3/01 7:34:46 PM Pacific Standard Time,

> > Babycolt98102690@... writes:

> >

> >

> > > Harper: You seem to eat very strange things. LOL

> > (Warning, after I wrote this below -- it's just personal rambling, no

> useful

> > information, so don't waste your time if you're in a hurry, but I've

> written,

> > so I'll send.)

> >

> > Huh? I don't remember talking about anything I ate, on-line -- remind

> me

> > (brain fog is SUCH a good excuse.) I guess I have eaten strange things

> from

> > time to time, depending on where I was and what was available and how

> hungry

> > I was and how broke. When working long hours on my last job, across from

> a

> > sandwiches-and-bait shop, I became very fond of Hostess Snowballs and a

> Coke,

> > bought just before the store closed for the night, to take back to my

> desk

> > and get me through the midnight hours. Earlier, I learned how best to

> shop

> > for camel meat in open-air, fly-frequented markets. Stewed chickens with

> > their heads left on didn't appeal in Hong Kong, nor did sea cucumber

> (sort of

> > a big hollow slug) but I ate them politely. Sheep's eyeballs at Easter

> in

> > Greece I graciously gave back to my host, saying I didn't deserve the

> honor.

> > Tiny translucent eels with big blue eyes, fried, taste quite good if you

> > don't look at them too long. Thin, ice-cold slices of raw beef with

> lemon

> > and capers (beef carpaccio) was lovely on hot nights in Rome, but my

> husband

> > got toxoplasmosis from it (hasn't hurt him so far). I drew the line at

> > fermented shark in Iceland, after a few bites -- it tasted strongly of

> pee,

> > to me. I did become quite fond of the dried raw cod, to be eaten like

> candy.

> > Then there was the plate of fried bulls' balls and intestines in a very

> > spiffy restaurant in Mexico City -- the intestines came in short lengths,

> > tied into bows.

> >

> > Now, nothing tastes better than really good pure unsalted peanut butter

> from

> > the corner store, used in small amounts with the oil drained off on

> really

> > good bread. That's breakfast and often lunch, with an apple added and

> > non-fat milk. Not the best thing to eat often, nutritionally, but it's

> easy,

> > and that counts for a whole lot some days, doesn't it.

> >

> > Tonight my husband is in town and is cooking spaghetti. Yummm!

> >

> > Harper

> >

>

> --- Have a fun day!

> --- debbiehenry@...

> ---

>

>

>

[Guest guest]

Harper and Debbie,

I know what you mean!

I still dont understand why doctors dont always listen to the patient.

I mean, we are the ones in the body, we know what is normal for us,

and we know when something has gone wrong. And dont they get annoyed

when you tell them of some " symptom " that does not fit what they

perceive to be the correct diagnosis..so quick to dismiss it. I am so

grateful that the new doc @ my family practice actually sat down and

listened to me, and hardly let me out of his sight until he got me to

a new gastro. Who in turn spent more time with me the first visit

than the former did in 3 OV. Hope we all get to find more of the

latter, and few of the former.

nne

> In a message dated 2/3/01 8:18:56 PM Pacific Standard Time,

> debbiehenry@e... writes:

>

>

> > I thought I would scream if one more doctor told me I was too

young to have

> > problems, that it must be all be in my head (nevered bothered with

blood

> >

>

> I may have told you (probably have) that someone who developed the same

> symptoms I did at the same time was given " something for her nerves "

and

> wasn't diagnosed until she was going into a coma; fortunately, she

was able

> to get a transplant quickly. I was diagnosed immediately, taken

seriously

> (of course, being bright orange helped that!) I'm glad you finally got

> someone to pay attention to your medical needs.

> Harper

[Guest guest]

Thanks Harper that is worth thinking about. I have started telling people

who say if there's anything we can do, don't say it unless you are ready

because I will take you up on it. Someone I was counting on to help with the

yard sale next Sat. said well we might go to the lake next weekend. She was

very upset because she had to have her dog put to sleep. Well, I loved her

dog too but what has that got to do with helping me, GIVE ME A BREAK. My

husband and my mother say I go beyond the call of duty to help, well I know I

will be rewarded for it someday but it doesn't seem like it will happen on

this earth. It could be worse I know, at least Jodi has insurance and

hopefully I have a big OLE liver. Nothing else about me is small except my

chest so we should be in business. LOL..............Take care Harper and

thanks for the suggestion. Genny/Jodi's Mom

[Guest guest]

Thanks Harper that is worth thinking about. I have started telling people

who say if there's anything we can do, don't say it unless you are ready

because I will take you up on it. Someone I was counting on to help with the

yard sale next Sat. said well we might go to the lake next weekend. She was

very upset because she had to have her dog put to sleep. Well, I loved her

dog too but what has that got to do with helping me, GIVE ME A BREAK. My

husband and my mother say I go beyond the call of duty to help, well I know I

will be rewarded for it someday but it doesn't seem like it will happen on

this earth. It could be worse I know, at least Jodi has insurance and

hopefully I have a big OLE liver. Nothing else about me is small except my

chest so we should be in business. LOL..............Take care Harper and

thanks for the suggestion. Genny/Jodi's Mom

[Guest guest]

Hi Cheryl (ID),

Thanks for your kind words. The doctor mentioned something about blocked

bile ducts. Is that the same thing? He runs fevers ranging from 101-103 and

they only last a day. Sometimes he complains about a headache with it,

sometimes he doesn't. The doctore hasn't mentioned an ERCP. So far he is

scheduled for an endoscopy, colonoscopy, upper GI and liver biopsy. His

liver biopsy will be on March 8th. How long does it take to recover from

it? I'm supposed to be flying to Phoenix on the 12th and need to know if I

need to change the date of my flight. I'm supposed to be meeting the movers

out there on the 13th and flying my mother in law back on the 15th. She

won't fly alone and my husband says he can't go get her.

What are other symptoms of PSC?

Good luck with your custody battle. Your daughter may not realize it right

now, but she has a great Mom.

Debbie (Tommy's Mom)

>

> Debbie, I forgot. When is Tommy having his biopsy? It seems like I

> heard that

> fevers are associated with Primary Sclerosing Cholangitis (PSC). But

> I got sick

> frequently with fevers during the worst part of my illness but they

> were low

> grade and of short duration. Are they considering doing an ERCP? I

> do feel so

> bad for you and all you mothers who are struggling to help your

> little ones. I

> have a daughter who is a recovering (finally) drug addict. She is

> really making

> progress right now. It really was a good thing for us to kick her

> out and get

> temporary custody of her daughter. Anyway, I would have done

> anything to help

> her. I wished I had the addiction. And I'm sure that's how you all

> feel. You

> would rather have the illness than have them deal with it. I am so

> glad it's me

> with this illness. I can handle this. Things are better at home with

> everyone,

> but I'm sure that there will be times. . . My youngest daughter is

> 13 in a few

> days. I know the age--tell Tommy we're all praying for him and you

> and your

> family. Cheryl ID

>

>

>

>

[Guest guest]

Hi Harper: Glad to hear the biopsy wasn't bad for you. Genny

[Guest guest]

Genny,

I had my biopsy last month. The absolute worst thing was the

anticipation of it. The doctor told me the most I would feel would be

like a bee sting from the local. He was right..just like a bee sting.

I was a little uncomfortable for a couple of days after, but that was

all.

nne

> Hi Harper: Glad to hear the biopsy wasn't bad for you. Genny

[Guest guest]

In a message dated Sat, 24 Feb 2001 5:13:37 PM Eastern Standard Time, Mike

Claffey <mclaffey@...> writes:

<< As far as why the normal liver itch is ruled out I'm not sure. I do

know that I was never this itchy in the beginning. It started after I

had been on Imuran for a year. It was the most horrible itch. Night

after night up all hours itching. My doc. has also commented on my eyes

being very blood shot as being part of the allergy. He has even told me

that when I am asked about having any allergies I should mention Imuran.

I did try Atarax. Joanne was very helpful in making many suggestions as

I became increasingly itchy. It didn't even help a little. At the time

I was taking 60mg of Allegra. As soon as my Allegra was increased I

found results. I have also had sun reactions two summers in a row.

Since we a summer home at the beach staying out of the sun is out of the

question.

I pray no one ever has to go through the horror of the dreaded itch.

I hope your weekend is going well. I have been out every weekend since

finding out I am so much better than expected. I think my family is

finding my new found desire to be out on the town out of the norm. Too

bad......after two years being home ten time more than being out....I'm

living it up.

Joan Claffey

NJ

[Guest guest]

Harper, as great as that would be if someone is doing that well they would

tell us and we wouldn't worry about them not posting. It's just like when I

didn't hear from I knew there was something wrong. When you have a

friend that you talk to even if you've never met them they don't just all of

a sudden stop writing you without a reason. Even if Jodi was cured tomorrow

I would still want to know how everyone else was doing. Was I sounding

negative or something?

Genny

[Guest guest]

Dear Harper: Thank you so much for the thought but you have bills of your

own to worry about. I hope it won't come to it but you must prepare yourself

for a transplant someday. Insurance never pays for everything and in Jodi's

case you go from two salaries to one and it puts you in a bind. We are just

trying to do what the social worker said and plan ahead so she won't worry

about the money and won't get bad credit over this.

What I was trying to get across is it is a bad state of affairs when

animals are more news worthy than people. The media is mostly interested in

selling newspapers, but remember she is the one who called me, I don't know

what her problem is.

Hope you had a nice day Harper. Must run for now, its almost time for bed

and another Monday. Take care and again thanks for the offer.

Love, Genny

[Guest guest]

In a message dated 4/15/01 7:41:41 PM Pacific Daylight Time, Babycolt98102690@... writes:

..

What I was trying to get across is it is a bad state of affairs when animals are more news worthy than people.

Genny, I know that was the point you were making. You were very clear about that. My offer still stands, if you choose to take it up. (I'm not rich at all, but I can always come up with a bit if it will help.) I'll be thinking of both of you; you are inspirations to all of us.

Harper

[Guest guest]

Harper

I also have been having all kinds of trouble getting mail and having what I send getting out....I wrote many replys on the 1st and I am just starting to see them showing up now...very weird....

hope this gets to you...lets see how long it takes.....Sent it on the 4th at 10:30.....

Ones I sent on the 1st are showing up with different dates....like the 3rd and 4th...

hope this gets straightened out...tough to keep in touch and up to date....

Luanne Ty's mom

[Guest guest]

Yes, Harper I'm sure but I would like their paydays. LOL

Genny

[Guest guest]

In a message dated 5/27/01 10:12:06 PM Pacific Daylight Time, susant@... writes:

Yes, I have AIH and the only food warning my doctor said , was no alcohol at all.

, maybe doctors just go eeny-meeny-miney-mo when they give us instructions. Mine said a couple of drinks a week were fine. I know someone else with AIH (in remission) who now gets deathly ill if alcohol has been used in preparing a dish!

Harper

[Guest guest]

In a message dated 8/1/01 9:16:29 PM Pacific Daylight Time, susant@... writes:

Next week I am going to an endocrinologist to find out what to do about osteoporosis seen in my dexa-scan in my hip. I don't know how bad it is yet. Kaiser does the scan only every 2 years, I should have gotten one on my own a year after my first scan in 1999 . in So.CaL. .

Let us know what you learn. A doctor's assistant at Kaiser talked me out of a scan before I developed AIH. The scan I got last summer shows I am "at imminent risk of bone fracture." And, of course, Kaiser does the scans only every two years. I haven't leaned on them hard for another scan; they point out say there's nothing to be done beyond Fosamax and calcium anyway.

Harper