carole

[Guest guest]

How did you find a live-able diet?

[Guest guest]

Hi Carole,

I've actually been in both Washoe Med and St. s in Reno and they are both

excellent hospitals. I love my GI and he seems to really be up on AIH. I'm

not seeing a hepatologist, but understand there are some great ones in San

Francisco. UNR is also a great school. Believe it or not all of my kids

ended up going to schools in California. After living in Tahoe so many years

they wanted a warmer climate! Three are in LA and one in . Due to the

redevelopment in Tahoe this place is going crazy!! There seem to be tons of

jobs! I think that is great that your family will follow! Thats my hope some

day that mine will move back to the area. My husband and I talk about

spending part of the winter in LA to get away from the snow and closer to

them. I love the snow until about March, then I'm done! We don't have much

of a spring, but the summers and falls are the best! When summer comes I know

why I live in the mountains! If you plan your move this way and want any

info, let me know. I'd gladly send you newspapers, etc.

Love K

[Guest guest]

Carole,

Time sure goes by quickly! I am just now returning your e-mail from before

Thanksgiving. My BS & MS are in Speech Language Pathology from Univ Nevada

Reno. I was very happy with my education there, and I hope that your

daughter finds the University welcoming.

I know there is a fairly new (5 yrs old?) School of Education building and

library, and an on-site preschool with a several year waiting list. If there

is anything I can do to answer questions about UNR or to help get info for

you or your daughter, please let me know (I just may be a little slow in

responding - sorry). And, of course, if your daughter likes to ski, hike,

bike ride, golf, camp, etc, etc, etc, it's a great place to live! Reno's

cost of living is not too bad, either. Most teachers can afford to buy a

home here.

I started out in the medical side of the field, working with adults who have

had strokes, cancer, head injuries, swallowing disorders (have spent many,

many weeks trying to get patients off g-tubes and back to eating orally),

etc. Alas, I made the switch to working with children in school because

medical care seems to be dictated by medical plan and medicare reimbursement,

quality care issues, ethical dilemmas, and physical exaustion. But, it turns

out it was one of the best decisions I've made. I truly love my students and

find my work challenging and fun. I rarely have a bad day at work and almost

always get at least one hug every day. Kids are such great little people...

Hope to talk to you soon,

Jane in Reno

[Guest guest]

Good Luck on the job interview tomorrow. Just to let you know, Randy went back to work 10 months post tx and has been full time since. The best thing we did was wait awhile and let him recover at a slow pace rather than rush him back into the workforce too soon. My tx team said if we could afford it to try and keep him off a year. But at about 8 months he got antsy so he went back part time for a few months and then went full time.

Now if you met us, you would not know who was the donor and who was the recipient. Life is good....

Cheryl & Randy

[Guest guest]

Cheryl,

That is so awsome he has done so well. It gives all of us hope, I

beleive. You were his donor? I guess that is proof you are a

perfect match! How hard was the part as donor? Just curious. I

have heard that it can be harder on the doner than the recipient -

the surgery that is. Wow! Does that mean you guys have matching

scars? You could make for great party entertainment if you both

learned to belly dance.

Love,

Carole K

[Guest guest]

Carole,

Please know that your friend's son is in my prayers!

W

[Guest guest]

Carole,

Oh you are so right about that pregnant thing!! I have been pregnant seven times. My husband got a vasectomy after the last child.... I say "baby" to him even after 20 years and he rolls over and goes to sleep!

Just Marcy

[Guest guest]

Carole if you promise to be as bad as we are I'll think about sharing [you'll have to talk Marcy into giving up part of the couch she has more of it than I do].

the

WV hillbilly

[Guest guest]

Paybacks!!!!!! Paybacks!!!! Paybacks!!!

Hitting below the belt!!!

OW! That hurt!!!

What goes around comes around!!!!!

Well, I never!!!

I am without words!!!!

I am surprised at you!!!!

Bert!!! BERT!!! BERT!!!! BERT!!!!!!!!!!

((SNIFF SNIFF)))

AND TO THINK......

i WAS GOING TO TELL YOU THE ANSWERS TO MY NEXT MISSING LINK PUZZLE.........SO YOU COULD HOLD IT OVER BERTS HEAD.....

I AM SOOOOO DEVASTATED!!!

WAIT......

LOOKING IN THE MIRROR!!!

OH NO!!!

WHO IS THAT WOMAN?

HMMMM.....

NOT BAD FOR 56...... (turning around......) OH NOOOOOO!!!

I VOW NEVAH NEVAH AGAIN WILL I SIT ON A SOFA AGIN!!

( I ) } teehee!!

JUST Marcy!

I I I I

I I I I

[Guest guest]

I feel your pain.

[Guest guest]

Wow! What wonderful news! I could just picture your doctor dancing arounn while he tried to talk to you. Aren't tears of joy sweet and wonderful? Well roll the dancing floor and celebrate while you make your play and, do an extra jig for the rest of us

Amy

[Guest guest]

Dear Carole,

You are too funny!

Cheryl & Randy

[Guest guest]

Carole, What a wonderful opportunity for you to speak tonight at the

college! Have you ever done anything like that before? I wish I could

be there myself to hear you. Do you think there would be anyway I could

read your speech? I think someone should go to all schools (elementary

and High) and teach about the liver and what it does and signs to look

out for. To many die from not knowing. I found two of the books that

mention the half moons on the fingernails. I know I have one more article

around here. One book is the Palmer Book. " Signs that suggest

Cirrhosis " page 22 Terry's nails-a condition in which the normal

pinkish color of the nail bed turns completely white and the half moon

circles at the base of the nails disappear. The other book is a very old

medical book of mine. Under discoloration of nail-The nail bed appears

pale in anemia and white in chronic liver disease. I would really like to

know from everybody if their moons are gone. I am always looking at

people hands to see their nails. Of course what can they do? Blood work

would probably be normal. Numbers are not going to go up until basically

your liver has had enough. Right? When I first was dx and got really

sick, I was at the emergency room alot. Doctors kept looking at my

tongue. Even nurses and people who came in to take blood wanted to look

at my tongue. My Dad said he read that a person with a liver disease has

a white coating on their tongue at all times. And I do. But I have never

been able to find any reading on it. Have you ever heard this? Well

want to wish you good luck tonight!! -NH

[Guest guest]

Carole so glad you had this opportunity to tell others about this disease. I know you wowed them because you have such good word power and spirit. Maybe you can go on a lecture tour.(You can get paid for those!).

the WV hillbilly

[Guest guest]

Hi Jan,

I went to the walk in clinic. And guess what? My BP is high. I was

shocked by it. Mine is ALWAYS like 90/60 this time it was 138/98 -

very high for me. They did it a couple of times and never went

down. Now have to go see my reg. doc on Monday. Pissed me off. Can

you beleive that crap? When I was well over 200 lbs and on steroids

BP was just fine. Now I am off pred for a year and have lost over 70

pounds now, and what do I get? Argh! I think it is from having to

teach my daughter to drive. So they have no clue right now, just

said if head pain or bleeding gets worse to go to ER. Didn't make

Carole happy at all. Makes me so mad. I had planned on no doctors

all summer. This disease is really starting to cramp my style, I may

just have to give it up. I wish! Take it easy. I will let you know

how it goes.

Love,

Carole

[Guest guest]

Carole,

Hate to hear the BP is up. If you determine it IS teaching your

daughter how to drive, I can believe that. I had that experience

last year...my husband bailed out , course he went the extreme. I

kept telling him he could have just declined rather than have a

heart attack to get out of it!

You may need to watch out for other side effects from riding in the

car while she is in learning mode, such as:

bruised foot soles from hitting the nonexistent brake on the

passenger side

flat butticus: from pushing your bottom into the car seat at the

thought of an imminent collision

bruised palms from bracing yourself when the brake is applied

suddenly (usually right after you have reminded her while trying to

suppress the tones of terror)

tics and tremors from the continual assault on your nervous system

during the ride.

Let's hope the BP is a short term thing like the above...they

usually disappear within a day or so... until the next ride.

Take care,

nne

> Hi Jan,

>

> I went to the walk in clinic. And guess what? My BP is high. I

was

> shocked by it. Mine is ALWAYS like 90/60 this time it was 138/98 -

> very high for me. They did it a couple of times and never went

> down. Now have to go see my reg. doc on Monday. Pissed me off.

Can

> you beleive that crap? When I was well over 200 lbs and on

steroids

> BP was just fine. Now I am off pred for a year and have lost over

70

> pounds now, and what do I get? Argh! I think it is from having

to

> teach my daughter to drive. So they have no clue right now, just

> said if head pain or bleeding gets worse to go to ER. Didn't make

> Carole happy at all. Makes me so mad. I had planned on no

doctors

> all summer. This disease is really starting to cramp my style, I

may

> just have to give it up. I wish! Take it easy. I will let you

know

> how it goes.

>

> Love,

> Carole

[Guest guest]

Carole I wonder if we could put a packet together between all of us so that we can educate people. I know quite a few doctors that I would like to educate and some of my sons friends parents. When they here that word hepatitis they freak out.

the WV hillbilly

[Guest guest]

I would be will to help with this. I think it is really needed.

Some of the content I feel should address:

What is Autoimmune Hepatitis?

How does a person get it? Is it contagious?

How does it effect the person who has it?

Patty

-----Original Message-----From: MITSMEMYERS@... [mailto:MITSMEMYERS@...] Sent: Monday, July 07, 2003 6:19 AM Subject: Re: [ ] Re: CaroleCarole I wonder if we could put a packet together between all of us so that we can educate people. I know quite a few doctors that I would like to educate and some of my sons friends parents. When they here that word hepatitis they freak out. the WV hillbilly

[Guest guest]

We need to figure out a way to get this going any ideas?

the WV hillbilly

[Guest guest]

Carole how abut we start by approaching talk shows or maybe put together a packet that can be taught in health classes at schools and collages.

I was made to quit working at the school and at my sons ballgames because of this. It is not only debilitating it is humiliating.

I have offered that if anyone my docs know get diagnosed with the disease they can have my name and I will try to help them.

Went to a new doc yesterday and he took all my info to educate himself.

Something definitely needs done!!!!

the WV hillbilly

[Guest guest]

Carole & , I also agree that not only the public but our docs need

to be educated. My hep. specialist I see is at Cleveland Clinic & was

previously from Mayo Clinic. He had very minimal verbal info to give me let

alone ZERO written info. I asked if there were any support groups &

he said that the 'disease' is so rare there was nothing available. I just

spoke with him yesterday because my stomach has been killing me, but he said

it's muscle pain (due to the bronchitis I'm trying to get over-one of many

things I pick up with a compromised immune system). I am down to 7mgs. of

pred. & he thinks I may relapse when I get down to 5mgs.. He says that

it will take a minimum of 7 more mos. to get off the pred. (if relapse doesn't

occur). My enzymes are right at the normal/abnormal range, & my albumin

is low. He says he regards it a relapse if the enzymes double. Is his protocol

similar to anyone else's in the group??? I have an interview on 7/11 for

disability. Any suggestions to help to be approved would be appreciated!

Thanks! Best wishes to everyone,thanks for the love, support & guidance.

Sue (from Ohio)

MITSMEMYERS@... wrote:

Carole how abut we start by approaching talk shows or maybe put

together a packet that can be taught in health classes at schools and collages.

I was made to quit working at the school and at my sons ballgames because

of this. It is not only debilitating it is humiliating.

I have offered that if anyone my docs know get diagnosed with the disease

they can have my name and I will try to help them.

Went to a new doc yesterday and he took all my info to educate himself.

Something definitely needs done!!!!

the WV hillbilly

[Guest guest]

Wrote to Oprah and am waiting for a reply but maybe if enough of us do it they will hear us?

the WV hillbilly

[Guest guest]

:

I think writing to Oprah is a wonderful idea. I just don't have any energy to put into something like that right now. Maybe I will be able to jump in at a later date....

Hope your spirits are up these days.

Love,

Marty

-- Re: [ ] Re: Carole

Wrote to Oprah and am waiting for a reply but maybe if enough of us do it they will hear us? the WV hillbilly

[Guest guest]

Dear Carole,

Are your joints what are hurting? I get extremely dry skin, it looks like I have psorisis but I don't. If it's your joints, the rhuemy should be able to help ease the pain.

I had a lot of trouble with my voice when my lupus really flared. Made it difficult to start my first graders in the fall. I left work in Oct. and it took until about March for it to get better. None seemed to know what caused it but when I got tired or another infection was starting, the voice would go again. It was weird but got better.

Talk softly - it'll make people wonder what you're saying!

Amy

[Guest guest]

, Bore me anytime & I want Pics. I am still waiting for Ruths pics. I do think we need a photo board. I'll add when my bathroon is ready.

Patty

-----Original Message-----From: Weston [mailto:karenw@...] Sent: Tuesday, July 22, 2003 1:08 PM Subject: [ ] Carole

Carole,

I am pretty sure Wellbutrin is not an SSRI. Unlike most antidepressants, Wellbutrin can be stopped cold turkey with no adverse effects. Most other antidepressants, especially SSRIs, cause some unpleasant side effects (dizziness, nausea, cloudy brain, etc.) when you stop them, even if you taper them down before completely stopping them. By the way, I also don't think effexor is an SSRI, but I might be wrong. They put my daughter on effexor because it was found to be very helpful with both anxiety and depression. They felt most of Nikki's depression was being caused by anxiety. The effexor has made a tremendous difference in Nikki's ability to handle life. She is currently a very successful college student, just about to begin her senior year. She already had two academic scholarships which were awarded to her before she graduated from high school. A couple of months ago she found out she was awarded both of the English department scholarships she had applied for. This means she will have four adademic scholarships for her senior year of college. She will graduate with a B.A. in English around May 10, 2004. Her wedding will be May 29, 2004. She will begin a fifth year master's program around mid June 2004 and then graduate with a masters in secondary education around mid May 2005. She will be certified to teach middle/high school English, speech, theater, language arts, and journalism classes.

As for the wedding, things are going quite well. I recently got my 'mother of the bride' dress from the seamstress. It fit perfectly and is very simple but classy. It's actually a floor length straight skirt, sleeveless top, and long sleeve jacket. It is made of a mauve colored crepe material. I tried it on so Nikki could see it when she was home over the weekend and she absolutely loved it. The same seamstress will make the bridesmaids dresses and the flower girl's dress. She will start on them around December. We have already booked the church and minister (the wedding will be held at our church, which has a simple but tasteful sanctuary), photographer, videographer, florist, transportation (an antique car will take Nikki and from the reception to the place where 's car is hidden), and DJ (for music at the reception). We have not officially booked the place for the reception. We are going to have it in the ballroom of the local university. We cannot officially book it more than six months prior to the date. However, they have told me our date should be no problem and I am going to begin calling to ask if they'll let me book it about 7 months before the date. I figure that they may get sick of hearing from me and let us book it a few days earlier. As for the caterer, we decided we will do the reception ourselves. We are hiring a friend to oversee the reception and to do all the food things that cannot be done more than a day in advance. I ordered a wonderful book, "Cater Your Own Wedding", which has been invaluable. We have everything planned down to the smallest detail and I think the reception will be lovely. I won't bore the group with any more details but you can e-mail me personally and I'll give you so many details you will be ready to block my e-mails!

W