Rosemary

[Guest guest]

Hilda....

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the heart and very healing. Soooooo, laugh a lot, love a lot, and be healthy,

especially love a lot, the more love you give the more you get in return.....

Joan, List Moderator

Florida

AIH, 1 Gall Stone, HBP

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[Guest guest]

\take me off this list immediately.

[ ] Rosemary

> Yes, Hunt should get the flu shot. I called my hep cause the school was

> giving them and they said get it. There is a shortage of the vaccine this

> year so he should get to student health as soon as he can. I only take

5mg

> of prednisone for the AIH. I don't know what type I have either. I have

> been on the 5mg since July and don't see my hep again until Nov. It has

> been my psychiatrist taking care of me and doing labs. The new med is

paxil

> because I started having severe rapid mood swings and it turns out they

were

> from the ritalin I was taking. On Hunts behalf, the elevated labs could

> well be stress induced as mine were. My liver swelled and got very

painful

> so I knew the labs were up before testing. Let me know how his cold gets.

> I had to take meds for congestion about 3 weeks ago. Take care of you.

>

> Debra

> your gentle friend

> God Bless

>

>

>

>

>

> _______________________________________________________

> Say Bye to Slow Internet!

> http://www.home.com/xinbox/signup.html

>

>

>

>

[Guest guest]

. i am confused myself about the damage of Hunt's liver. The doc did say

that no permanent damage had been done but he was certainly very jaundiced

when he first went in. I just don;t know, this is all so confusing. I am

thinking about seeing another hep. This one is suppose to be the best at Duke

but he is getting ready to retire in 3 years so i think he just is not into

learning more and is not digging hard enough. I just don;t know. I do know

that right now we are just trying to come up with the right combination of

drugs to keep his ezyme levels normal. To thell you that truth that is the

only numbers (alt's and ast's) that the doc seems interested it. Maybe that

is all he should be though. Well i do know that they are looking at his wbc

counts also.

Thanks so much for caring.

Rosemary

[Guest guest]

Sylvia

Hunt and his dad both just love diving. I will certainly let you know how

this weekend does. He was certified before we found out he had aih and has

not dove, dived, or doven (which ever it is) since. This weekend he has

signed up for the advanced divers certification. I will let you know how this

goes. He is sooo excited about it.

Have a great day,

Rosemary

[Guest guest]

Hi Rosemary,

I also got acne from the medication. Really big ones. It is not all that

bad, but so hard to stay of them. I used to have a very nice soft skin and

find it very troublesome. 27 and look like 18 and sometimes feel like 72.

How confusing (LOL)!

The reason of my respone; I found out that when I go ('ships' I don't know

how to call this in English therfore I will try to describe it) under the

artificial sun screen ('hoogtezon' in Dutch) it gets a lot better and they

clear up sooner. You have big screens you can put over your bed and you also

have small facial ones. They work on electricity. Maybe it is worth a try.

Hope I made some sense!

Please take care. And wish Hunt good luck while getting his advanced drivers

certificate.

Loes, AIH, The Netherlands

Re: [ ] Joan C

> Joan, thanks for the support. I was just thinking today that maybe he

ought

> to see a counselor. If he is hard headed as usual, then it may be hard to

> convince him but i can certainly try. He is lucky that he has not gained

> weight, actually it would not hurt him if he did, but his face is slighly

> moonshaped and his acne is really bad. I bought him some tea tree oil that

> someone suggested the other day. Hopefully that will help. Someone else

also

> suggested 2 other things but i cannot find them at any of the drug stores

> around here. (even at walmart). Maybe it is just the part of the country

we

> are in. My husband and i are still looking for them.

>

>

> Hunt and his dad are both scuba divers. They are suppose to get there

> advanced divers certificate this weekend. I sure hope this is not to much

for

> him. He is SOOOO excited about it. This will incorperate 2 days of diving,

> ANyone have any thoughts on this?

>

> Thanks for eeryone's support

> Rosemary

>

>

>

>

[Guest guest]

I too would some day like to get dive certified. Let me know how he does. On my

good days I think I can still conquer the world, but usually end up just

beginning the campaign for about 1.5 hours instead of going all day. Best of

luck and hopes for his success.

Sylvia - AIH - Las Vegas, NV

[Guest guest]

Rosemary, just a note to let you know I am thinking of you and Hunt. Genny

[Guest guest]

Rosemary, take a long hot bath. Jodi's are bad too right now but all we can

do is pray and love them. Praying for you both. God bless, Genny

[Guest guest]

Rosemary, if you feel the doctor Hunt is seeing isn't giving you any answers

can you see someone else? When you said he hadn't seen his doctor since May

that sent up a red flag with me. Jodi sees her Gastro every 2-3 weeks and

the hepatologist every 3 months. She has her labs done every two weeks right

now. Better safe than sorry and if it would give you piece of mind a second

opinion is always a good idea. Take care, Genny

[Guest guest]

Hi Rosemary, glad to hear your family is getting away. Hope you have a great

time. I was saying the same thing the other day. The doctors were telling

us how rare AIH is when Jodi was diagnosed in Feb. After being in this group

there seems to be plenty of people with it. Take care and best wishes for

Hunt. Genny/Jodi's Mom

[Guest guest]

Yes, I know you want to protect him as much as possible but you must let him

be a teenager. My mother is back on Prednisone at 40 mg for her ITP and it

makes her so hyper. She can't sit still so I do understand the way Hunt

feels but he must realize he needs his rest. Even though it's been long ago

I still remember thinking I could do anything when I was his age. My mind

still thinks that but the old body won't go a long with it. LOL I didn't

know there was more than one kind of AIH. It will be interesting reading the

replies on the subject. Take care and have a nice get away. Love, Genny

[Guest guest]

> Hi Debra,

>

> Gosh girl, you have been going through a lot and

> not letting us know.

Rosemary, I didn't post for a couple of reasons, 1) didn't feel able and 2)

didn't want to frighten the new members. I hope now that my experience will

help someone else before it comes to hospitalization.

How is Hunt and are you taking care of you? Thanks for caring.

Debra

your gentle friend

God Bless

_______________________________________________________

Say Bye to Slow Internet!

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[Guest guest]

Hi Rosemary, well you would give him back in no time. He is however a pretty

good cook. LOL I love it up there but you don't know how cold natured I am.

We were watching the Gators and South Carolina yesterday and he was sitting

here with his shorts on and I had a blanket. I have low blood pressure and

his is high, I really think that plays a part in it. My feet stay cold and

he just loves it in the winter when we go to bed and I put those ice cubes on

him. I have never been there when the leaves are changing, hope to do that

before I die. Only snow I've seen is the little we've had down

here.......How is Hunter feeling these days? Nice talking to you, better go

for now. Take care and God bless, Genny/Jodi's Mom

[Guest guest]

Rosemary, please take a big enough suitcase for me to get in. It would take

a pretty big one for sure. LOL I'm not fat but not skinny either. Well,

not just right either so in all fairness I should say I'm bigger in some

places than I would like to be but smaller in other places than I would like

to be. GET MY DRIFT?????? Have a great time. Genny

[Guest guest]

Yes, I know what you mean. When they get that age they would rather be with

their friends but the good news is when they get married then they want more

time with parents. That's how I was and Jodi is the same. Kids grow up to

fast don't you think. I can hardly believe my grandson will be three in

April. I had Colt this afternoon but he has a cold and wasn't feeling to

well, took a three hour nap. Jodi wanted me to let him sleep but I am afraid

he will keep her up till midnight and she has to work tomorrow.....Have a

great vacation and quality time with the kids. Be safe and God bless,

Genny/Jodi's Mom

[Guest guest]

Thanks for the well wishes Rosemary. It will be a long day, won't get home

until about 9:00 PM. Just found out Friday I have to work Tuesday after

being told I would be off the whole week. Oh well thats life. Hope you are

doing well. Take care and God bless, Genny

[Guest guest]

We are just as taken back as you Rosemary. When Jodi was first diagnosed in

Feb. the Hepatologist said that a transplant was in Jodi's future but we

never guessed it would happen this soon, neither did he. They don't know if

she has had this for a long time or not. The only thing we do know is her

platelet count went down to 70,000 when she gave birth to Colton, three years

ago in April. The OBGYN that delivered him didn't both to tell us anything

about it and didn't follow up on it. We would have never known if the

doctors had not requested pass blood work results. Her primary doctor is not

happy with this at all and says she hasn't heard the last of this, talking

about the OBGYN. He is the Chief of staff of the Haines City hospital but

Jodi had Colt in Winter Haven. You may have read the post to Jerry that Jodi

is in the process of all the test done prior to meeting with the transplant

team in Miami. Thanks for the prayers and caring enough to ask. Take care

and God bless, Genny/Jodi's Mom

[Guest guest]

Hi Rosemary, as you I am afraid Jodi does not eat right. She is so worried

about her weight and said the other night she was going on a diet. In my

opinion she is already on a strict diet. No red meat, little salt and little

sugar, if she wasn't on the Prednisone she wouldn't weigh anything. She

makes me so mad being so hard on herself. I told her she needs to eat the

right kinds of foods and stop seeing herself as fat. She's much taller than

I am, about 5' 7 " I'm 5' 2 " and because I wear a smaller size she thinks

she's big. She gained a lot of weight with Colt and has lost that plus

some.....She got a call from the liver transplant team today and they want

both of us in Miami Dec. 19 and 20. She called me at work to see if those

dates were OK and I didn't get a chance to talk to her in detail because we

were a girl short. She did say they told her we would be in classes from

8:00 until 5:00 on the 19th. I don't know what this is about, I guess since

I want to be the living donor that we have to be counseled. That means the

doctors are going to have to speed things up to get all of her tests done

before then. I don't even know if I am a match or not, don't know how they

will test me. Well, hopefully they told her a lot more than I had a chance

to find out. I'm sure she will call me tomorrow and tell me what they said.

My mother is really taking this hard and she isn't well herself. I have

tried to convince her I have a real peace about it.......You won't ask me to

talk again. LOL Will let you know how things are going as I find out.

Thanks for caring and tell Hunter to hang in there. Love, Genny/Jodi's Mom

[Guest guest]

It sounds like we are in the same boat with our kids. I keep telling myself

that we must stay strong and have faith. Everything will be OK, just keep

saying that over and over. Seems like Jodi's labs get worse and a little

better and worse again, but the Hepatologist said this last time the meds

just aren't doing the trick. Could Hunter take a lighter load at school?

Stress is a bad thing for him. Praying for you both. Genny

[Guest guest]

Genny..... I hope all goes well. As for a match all that`s usually

required is same blood type and same general size, but as far as living

donor I don`t see that size would matter. I hope that`s how you are able

to go because otherwise she might be on the list for sometime. As always

my prayers are with you both.

Jerry

[Guest guest]

Rosemary, that's great. I'm very happy for you both, let's hope they keep

going down. Take care, Genny/Jodi's Mom

[Guest guest]

Hi Rosemary, I just read a post that said Hunter is having a lot of ups and

downs with his counts. Sorry to hear this, being the mother also I know what

your going through. Just wanted to say I'm thinking of you two and hope you

have a very merry Christmas and I pray for a better new year for all of us.

God bless, Genny/Jodi's Mom

[Guest guest]

Hi Rosemary: Your coming in loud and clear at this end. I haven't posted

much lately because I've been so busy. How are you and Hunter doing? Jodi

and I are doing pretty well and just waiting for all of the test to be done

on me so we can get on with the transplant. I wish it were over with

already. For the new members and I see there are many I am trying to be a

living donor for my daughter Jodi.....Rosemary I hope you two are doing well

and I better get back to the job of clearing out over 200 e-mails. Take care

and God bless. Genny/Jodi's Mom/FL

[Guest guest]

Hi Rosemary: I haven't talked to you in a while. Sorry to hear Hunter is

having such a hard time. Just know I'm thinking of you guys but having a

hard time keeping up with the group right now. Love, Genny

[Guest guest]

Rosemary, I don't know when the transplant will be done if all of my test

come back OK. I would think as soon as possible but they tell me I have

about six trips back down to Miami if the first three test come back good.

Jodi is feeling pretty good right now thank God. Give Hunter a big hug for

us and thanks for thinking of us. Love, Genny