Trish

[Guest guest]

Hello Trish

Nice to hear from you. You may have read from the posts that I have had AIH

since 1967 and I'm still staggering along. I have mailed to Mohammad a sort

of diary I have kept of the progress of my AIH over the years and of my

medication, you may like to have a look too if you think it might help.

Sorry to hear you have varices too, I am not sure if you are saying they are

in your stomach or in your oesophagus. I have them in both but to date it

is the ones in my oesophagus which have bled.

Hope you manage to keep chugging along like me, especially as you have

children to run around after!!

Always pleased to hear from you,

Janet (UK)

Re: [ ] Mohammad, and Janet

> Hello,

>

> My name is Trish and I have just recently discovered

> that I also have AIH (Dec. 00). I am 36 and from the

> states. The thing is, that they thought I had it about

> 5 yrs ago when some tests I had done came back showing

> that I had it, but when they did the biopsy, it came

> back normal. They decided that it was a combo of my

> thyroid medication and birth control pills, that

> caused the abnormal tests, so they did not do any

> future testing.

>

> I am currently on prilosec, Imuran, Prednisone, Lasix,

> aldactone, and inderal.

>

> I dont know much about the varices except that I have

> them. I also had black stools, which they said was

> coming from my stomach liner that was bleeding. 2

> weeks after my hospital stay all but one of the blood

> tests had gone back to normal except for one which was

> very close.

> They are currently lower my prednisone every 2 weeks.

> I started on 80mgs and now I am on 25, going down 5

> mgs until I go back.

>

> I hope we may be able to commnicate with each other

> some, and maybe I will be able to learn as well as

> answer questions.

>

> I want to be able to be normal again, or as close to

> normal as possible. My husband is an OTR truck driver

> and I have 4 children, 3 of which as still at home.

> One is 13 and 4 yr old twins. So, as you can see its

> not easy to be down and out.

>

> Thanks so much

> Trish

> --- janetelmes <janetelmes@...> wrote:

> > Hello Mohammad

> >

> > It is nice to hear from you. I am 55 years old and

> > live in England.

> >

> > I am also new to the group, I found it by browsing

> > the internet a few months ago when I was looking for

> > fellow sufferers of auto immune hepatitis which is

> > what I suffer from. I was diagnosed with it in 1967

> > and have had 7 bouts of jaundice over the years and

> > been taking steroids (prednisolone) all that time.

> > Others in the group asked me for some details of my

> > liver history and I posted them a while ago. I will

> > post you a copy separately in case you would find it

> > helpful. The hepatitis has caused cirrhosis and

> > that has caused the varices in my oesophagus - the

> > varices were found when I had an endoscopy about 3

> > years ago. I had a bleed this July which came very

> > unexpectedly, I was vomiting blood and had black

> > stools. In hospital I was in the Intensive Care

> > facility for 3 days and first they used a balloon

> > tamponade which did not work so they then did band

> > ligation and to date I have had no more bleeds

> > though I am warned that there will be more. Like

> > you, I have an enlarged liver and spleen, caused I

> > am told by the pressure of blood not being able to

> > pass through my scarred liver (this is also the

> > cause of the varices).

> >

> > Also like you, after I got out of hospital I looked

> > on the internet for information about cirrhosis and

> > varices and frightened myself witless!!! sometimes

> > knowledge can be an upsetting thing and one can

> > sometimes know too much!!! What makes me feel the

> > worst is knowing I can have another bleed and

> > without any warning. I have been told by my doctors

> > that the banding and the medication I am on have

> > lessened the possibility of this happening for a

> > while at least. Are you taking any medication? I

> > am sending you details of mine.

> >

> > I think someone else in the group has just had a

> > TIPS and hopefully she will post to you with some

> > information soon.

> >

> > Have your doctors mentioned if you will need a liver

> > transplant in the future? My doctor has said that I

> > will and several of the group are in a similar

> > position and a few have already had a new liver.

> >

> > Do not let yourself be too depressed about your

> > situation, make sure you are optimistic about seeing

> > your grandchildren.

> >

> > Post to me again any time as I think it helps to

> > communicate with others in a similar position.

> >

> > Regards

> > Janet

> > UK (United Kingdom)

> >

>

>

> __________________________________________________

>

[Guest guest]

Janet, I suggested, a few minutes ago, that you check on calcium "for your osteoporosis." I didn't mean to imply that calcium would repair osteo problems, only help prevent future difficulties. Other drugs (that you know about) can help mend the bones, very slowly.

I should also have mentioned to avoid the calcium tablets that are based on oyster shells, as my doctor says they're too hard on the digestive tract.

It's heartening for us (selfishly and otherwise) that you've kept going with AIH for thirty years without a transplant. Perhaps your next thirty will be easier, with medical advances.

Harper

[Guest guest]

Janet, I think its real great that you have kept a diary of your illness. Not only does it provide a point of information, but its a good way to write feelings. I have been keeping a journal off and on for a long time. I dont even know where any of my writings are. I wish I had the kind of discipline you have. And I admire you for not letting an illness beat you. That truly inspirational.

Christi

[Guest guest]

In a message dated 5/30/2001 2:35:00 PM Eastern Daylight Time,

tricia810@... writes:

>

> I'm curious how you know this? Do you know whether she has had her

> revision/conversion to RNY or whether she is close to having this done yet?

>

> I would think that she would want this as soon as possible, yet last I knew

> she hadn't done it yet? Just curious, but not curious or crazy enough to

> ask

> her personally! : )

>

>

Well, she sent me a copy of one of my post from this list with a

question........ So she is either here or someone sent it to her.

Someone told me she was living in Florida. I heard on her webpage she refers

to her house as where she used to live. As far as her revision I don't know

if she had one or not. If she was feeling that badly I hope she did.

[Guest guest]

In a message dated 7/2/2001 9:55:43 PM Eastern Daylight Time,

wwmohler@... writes:

>

> Trish

> I live in SE MN in SPAMTOWN USA, (aka Austin.)

> Are you coming on a road trip?

> in MN

>

>

>

Yes, My Husband is from MN, And I went to U of M that is how we met.

If the doctors allow him to go we will go the first week of August for our

nephews wedding. How far away are you from MPLS?

Trish

[Guest guest]

In a message dated 9/10/01 9:04:29 AM Eastern Daylight Time,

nvalmassoi@... writes:

> Trish Lanman. Trish is a patient of Dr. R who is involved in a new clinic in

> Los Vegas performing wls...

>

>

So Trish will this doctor do a revision for you??

[Guest guest]

Hmmm well you must have looked like a suspicious character, lol. They didnt

search me.

Love ya

Pat

[Guest guest]

Hi I am sorry your daughter is going through this. I would suggest that you get her some counseling. It would probably be a good idea for the whole family. See if the hospital has someone that can talk and explain about all the affects of prednisone to all of you.

I hope she gets settled soon and starts to feel better.

the WV hillbilly

[Guest guest]

S,

If you don't mind please e-mail me directly at Mkantzle@.... My ex-husbands son by his 2nd wife has Tourettes. He is 8 years old and recently diagnosed. Sounds like he has a lot of the same symptoms your son has. I would love to talk with you directly. He's a great kid who is really struggling. His parents are divorced and remarried again and he has very little support. My heart goes out to him. I would love to understand more about this disease as my son and daughter are with him a lot and I want them to understand what he's going through.

Thanks.

[Guest guest]

Trish, I was glad to read that Kelsey's doing better. It's always

upsetting to a mother to see their child sick and especially with what

she has been through! Was Kelseys dx with AIH? Have they discussed with

you doing a liver biospy to see if she has any damage to her liver?

-NH

[Guest guest]

Jan I just read your email and I hope your daughter made it OK

We are praying for cooler weather here in WV

the WV hillbilly

[Guest guest]

Trish,

What wonderful news about Kels visit. I'm so glad they are allowing her some freedom. I know that will help her mentally. Hang in there and keep up the good work.

[Guest guest]

Thanks Trish,

I didn't mean to make you cry. Just a little discouraged. Today is a better day except I just got a phone call from my ex who said he thinks my son broken his hand last night. He is on his way here to meet me and we are going to ER. Wish him luck.

Thanks.

[Guest guest]

Dear Trish,

It sounds like you are doing all of the right things for Kelsey. Yes, she does need rest, even when counts are normal fatigue can wipe you out. It's wonderful that your were able to take her back at the end of the day. Have you met with the teacher, counselor, nurse and administrator. Here in Washington, an illness qualifies the child for special considerations - this could be important when she may have a less understanding teacher.

Ballet after missing school. Normally I would feel the same as you - you're sick, you're home. But since this is a chronic illness and you obviously don't feel like she's taking advantage of the situation, why punish her even more for being sick. Let her do what she enjoys and just watch the patterns. Physical excercise is so important and the focus she needs for ballet can help her through a lot of tough stuff.

As far as other students crying, ask the teacher or nurse to briefly explain that she has an illness that can make her very tired so she needs extra rest to help her stay healthy and be at school with her friends. They may want to do it when Kelsey isn't there - that's a judgement call for you. What they are afraid of is what they feel from the adults and Kelsey and that she might not come back. More understanding would help that transition be less stressful. They can show their support through pictures and letters but have the teacher screen them first - I had one very upsetting one get sent to a child because I only made sure who did them not what they said. They child who drew the picture had serious emotional issues so I now screen them all!

Trust yourself. You're doing great, mom!

Amy

[Guest guest]

I wasnt going to register the information on her necklace, didnt know

I could do that even. I just want something with Kelsey so if shes

never with me, is injured, unconcious, etc they know she has a

medical condition. If I put Prednisone on it, in 6 months she may no

longer be on Prednisone. Im not sure what I should put on it.

Trish

> Hi Trish....I agree with Debby....I wouldnt put Autoimmune

Hepatitis on the bracelet; that info would be available when the

medic alert info was accessed. Few nurses & quite a few doctors

havent heard of AIH, they all think its something viral. The worry is

being immunosuppressed & on prednisone in an emergency situation.

Personally I wouldnt want a label that says hepatitis anywhere on me

as Ive experienced a lot of kneejerk reactions, enough sometimes to

be ostracised.

> Love Jan

[Guest guest]

Trish,

They are tapering my prednisone. It is now down to 5 mg daily. However, I will leave the 5 mg daily in my medical info for a year after I am no longer on prednisone. This is because I read that it can take up to a year for your adrenal gland to function properly after being on long term prednisone. Even when the prednisone is stopped completely, I will need a dose of steriods during trauma (such as surgery, car accident, etc.) because my body may not produce enough naturally to get me through the crisis.

By going with the medic alert foundation, you can list only the things that will not change and they can keep the rest on file. You can update Kelsey's info 24 hours a day either by phone or online when anything changes. The bracelet could just have the following:

autoimmune liver disease

CALL FOR VITAL MEDICAL INFO

Kelsey's person medical alert foundation number

call collect 209-634-4917 USA

Obviously the phone number would be different for Canada. I was thinking that there was a toll free number on my bracelet, but it's a number that can be called collect from anywhere in the world. That's actually better since a toll free number would only work in the U.S.

I found out about the medic alert foundation from my mom. My stepdad has what's called empty sella syndrome - his pituitary gland has basically died and quit functioning. He has to be on steriods and also has to be given additional steriods in any major crisis because his body will not produce the natural steriods.

The $30 for the first year and $20 for each year after that is a small price to pay to give my family peace of mind.

W

[ ] Re: Trish

I wasnt going to register the information on her necklace, didnt know I could do that even. I just want something with Kelsey so if shes never with me, is injured, unconcious, etc they know she has a medical condition. If I put Prednisone on it, in 6 months she may no longer be on Prednisone. Im not sure what I should put on it.Trish> Hi Trish....I agree with Debby....I wouldnt put Autoimmune Hepatitis on the bracelet; that info would be available when the medic alert info was accessed. Few nurses & quite a few doctors havent heard of AIH, they all think its something viral. The worry is being immunosuppressed & on prednisone in an emergency situation. Personally I wouldnt want a label that says hepatitis anywhere on me as Ive experienced a lot of kneejerk reactions, enough sometimes to be ostracised.> Love Jan

[Guest guest]

Jan, I have never heard of carrying a card or anything warning that I

have been on prednisone for a long time. This is the first I ‘ve heard

of it, but then, the doctors here in our area are not exactly the best in the

world! Possibly this is why I kept prednisone on my tag. I just feel safer

with it, especially knowing that I could again go back on.

As for the morphine, I had a severe reaction to it once. Got all beet

red and peeled one entire layer of skin from my face. It was pretty ugly for a

while! So, I just prefer not to try for another reaction!

debby

[ ] Trish

Trish.....anyone who's been on high

& lengthy doses of prednisone should have been told by their doctor that a

warning card is to be carried at all times. In a high stress situation

like having an accident, or even in my case when I needed to have a tooth

extracted, a boost is sometimes required. Simplistically, an individual with

normally functioning adrenal glands the production of corticosteroid hormones

is inceased at times of stress (injury, surgery & infections). This problem

of increased need during stress ( & I dont mean ordinary daily stress but

stress to the body), the problem of increased need during is exaggerated

in people who are taking corticosteroids.(Prednisone affects the function of

the adrenal glands & can slow them right down). Even when prednisone is

stopped, after long term use (anything longer than a month) a warning card

should be carried for two years after stopping. Your doctor is the best person

to explain what you need to fill out as its usual for a doctor to verify the

details to medic alert in any case. But in any case any person who has Kels in

their care need to know shes on pred in case of an accident. It all sounds

heavy stuff but Im surprised your doctor hasnt explained this to you.

Hope you and Kels are

well. BTW I wont answer for Debby but personally I dont have

problems taking morphine but some people cant tolerate it.

Love Jan

[Guest guest]

Just a quick note. I have been on this site since you had yours surgery. It

is so awesome to hear you have lost 100 lbs. One question. Did you ever

have a plateau and for how long? What did you do to start losing weight again?

Donna Pinto

December 9, 2003

273\231

Little Rock

Dr. Hargroder and Dr. Wilshire

[Guest guest]

I had my mgb on 5/20/03 - I have lost over 100 pounds!! I have had

plateaus, and what is (for me) an easy solution. I stop weighing myself for

a while. Sometimes a couple days, sometime for up to a week or even a

little more. When I " feel " that the weight is coming off again, I hope back

on, and, lo n behold, The numbers are down. I keep a calendar hung up in my

bathroom with a pen to note my weight (only when it's going down). For me,

it's helpful.

Best of luck on your journey.

Felice (Fort Lauderdale)

Dr. R. Statesville

247.5/144

Re: Trish

> Just a quick note. I have been on this site since you had yours surgery.

It

> is so awesome to hear you have lost 100 lbs. One question. Did you ever

> have a plateau and for how long? What did you do to start losing weight

again?

>

> Donna Pinto

> December 9, 2003

> 273\231

> Little Rock

> Dr. Hargroder and Dr. Wilshire

>

>

>

[Guest guest]

Hi Donna,

Yes I had allot of plateus. some would last from a week to a month..

in February I only lost 3 pounds. But cameback in March to loose

10...weird.. Now I'm stuck again... I did not really do anything, but

I learned to wait and let my body do what is was going to do. I do

know that staying away from carbs as much seems to help push the loss

on a little. I have learned that your body is going to loose in it's

time and not ours. I still freak. Thinking I'm not going to loose the

last 20 pounds.. I'm 10 months out now. I avaraged about 8 pounds a

month until after my sixth month and then it went to around 5 or six

a month.

The best advice I can give you is to just chill and it will come off.

I have watched you and cheered you on from the side lines since you

have been on here. You have allot of determination. You are going to

do just fine. This is a rollercoaster Donna. Sit back and enjoy the

ride.

with the most love and respect,

Trish

> Just a quick note. I have been on this site since you had yours

surgery. It

> is so awesome to hear you have lost 100 lbs. One question. Did

you ever

> have a plateau and for how long? What did you do to start losing

weight again?

>

> Donna Pinto

> December 9, 2003

> 273\231

> Little Rock

> Dr. Hargroder and Dr. Wilshire

>

>

>

[Guest guest]

> > Hi,

> >

> > My name is Jayne and I live in New Hampshire. My son, Zachary,

was

> > diagnosed with Autoimmune Hepatitis Liver Disease in November of

> > 2002. His disease was found accidently. His intestines were

> > bleeding and in diagnosing his Ulcerative Colitis, they found

> > problems with his liver. After many tests including

colonoscopies

> > and blood work weekly, in December of 2002 Zach started his

> regimine

> > of medicaitons. His liver counts were up to as high as 1800

(which

> > normal would be between 35 and 70) and were doubling by the

week.

> > They started him on 60 mg of Prednisone every day and Imuran

daily

> as

> > well. Six weeks after starting the Imuran he began to run fevers

> of

> > 105 - 107 every day starting about 3:00. I would give him an

Aleve

> > and the fever would go away and not come back till the next day

at

> > the same time. After being hospitalized and 10 days and what

> seemed

> > like hundreds of tests, his dr's concluded it was a an allergic

> > reaction to the Imuran. He took it every morning at 5:30

> > faithfully. The first day he did not take his Imuran, the fevers

> > stopped. We stayed off it for 3 weeks and his dr's wanted to

start

> > him back on to make sure it was the Imuran causing the fevers.

> > Within 1 hour of his taking the Imuran, he began vomiting. His

> dr's

> > then switched him to 6MP. His first dose of 50mg caused him to

> > vomit. He wasnt ready to give up yet and neither was I. We

waited

> > for three day and tried again starting with only 25mg per day.

> (1/4

> > tablet in the am and 1/4 in the pm). It seemed to work. He was

on

> > the 60mg of prednisone for over 6 months before they started

> weening

> > him off it. Once zachary was stabalized on his medications

> > everything has been fairly normal for him. He plays all kinds of

> > sports and snowboards in the winters. We have reached a point in

> his

> > medical program (20 months from diagnosis) where he has been

weened

> > off his prednisone completely for the first time about 3 weeks

> ago.

> > So far..so good. He also has not been able to attend school in

the

> > last 8 weeks. Once coming off the prednisone, his immune system

> > failed and he got sick with in 3 days of being off it and still

in

> > school. He went back on the prednisone for 3 weeks and when he

> > produced normal labs the took him off again. This time we kept

> him

> > home from school and it seems to have done the trick. He needs

to

> > have his Liver Biopsy sometime this fall and we are hoping he

will

> be

> > able to return to school. The biopsy, from what I understand is

> > going to be the determing factory to whether he needs a

transplant

> or

> > not. Even though we are almost two years into this disease with

> his

> > liver and the other one for his intestines, it seems to be a new

> > challenge every day. Are there any other parents or single moms

> with

> > children with this Liver disease here? Maybe there is someone

that

> > can help me possibly understand what may lay ahead for us? Thank

> you

> > for taking the time to read my son's story. I am excited to have

> > found this group and looking forward to being a part of it!!

> >

> > Jayne, Mom to Zachary

> > New Hampshire

[Guest guest]

Hi how are you doing? I am so out of touch and need to get caught up.

I hope things are going well for you.

the WV hillbilly

[Guest guest]

Hi Trish,

I am glad Kels is doing so good. I will check out that site as soon as i can. She is a very special little girl [ But then her mom is special too].

Where do you guys live? can't they do something about the lice? In our schools they check them coming through the door and send them home right away when there is an outbreak.

Oh well sounds like it may be a better school anyway so maybe for the best. Hope it goes well for her.

[Guest guest]

Hi

We haven't set a date yet. In July we're going to the city to speak again

with the surgeon to iron out final details and ask some more questions. I'm

hoping for September. I went to a CI meeting last night. It was the first

time I'd met and spoken in person with people who've had the implant. One

woman was raving about my doctor, saying he was the best there is and she

was talking and hearing great, so that must say something.

trish

Trish

> Trish, when is your surgery date so those of us who do so can keep you in

prayers?

> I was scared too for my second surgery. But I had higher confidence in the

place and the surgeon who was implanting me and I knew what to expect post

operatively so that helped. My second surgery was shorter than the first and

my recovery much easier. I had no exterior stitches or staples and the

dressing was smaller too. Keep us posted. (You can do it!)

> R

>

[Guest guest]

Hi Trish,

does a great job of sharing tips on what to expect so you can be prepared

after surgery. I'd like to add a couple as I found these helpful for me.

Think soft foods for a couple of days. Your jaw might be sore and the soft

foods seem to make it easier.

If you have a recliner - you might prefer it for sleeping for a few days. There

are two reasons. First, it's more comfortable after surgery on your head and

second, keeping the head elevated a little helps to stop the dizzy feeling.

Whoops - here's advice number 3. I almost forgot this.

When you get up or when you move - go slowly for a few days. Don't move your

head fast in any direction. Just nice slow and even movements feel the best and

keep the dizziness at bay.

Alice