Re: Debbie/FL

[Guest guest]

Hi Debbie, I am putting Florida on your post now because we do have more than

one. Listening is one of the reasons we're here, talk all you need to. I

know your mother is thankful you called her and asked for help. That's what

I keep telling Jodi, I want to help but sometimes you have to tell me how.

She is very independent, wonder where she got that from. My husband would

tell you in a heartbeat, from her mother. LOL I have to go to her house and

do some cleaning when she isn't there because she thinks it puts me out.

Well, it doesn't I want to help as much as possible. She will ask me to keep

Colt ever once in a while but mostly I just say I want to keep the baby. She

knows I just hate to baby-sit, ha ha.........Hang in there Debbie and I hope

you have a good week end. LET YOUR MOTHER HELP God bless, Genny/Jodi's Mom

[Guest guest]

Hi Debbie, the only advice I can give you Hon is just pray. Have faith and

God will see you through, take one day at a time. I know that's easier said

than done. The weird thing is my mother has ITP, which is another immune

disease and when she's on Prednisone she feels like super woman. The first

go round the doctor decreased it until she was completely off and she was so

depressed. When her platelets started dropping again he put her back on

starting with 40 mg. and her depression went away. Her Oncologist can't

explain the reason why. I know people react differently to medication, but

maybe the newness to this disease is what your having problems with. I know

leaving your job has had a big effect and lets face it, it is a life altering

illness. Hope you start feeling better so you can enjoy the time with your

Mom. Know I am thinking about you and if you need to talk you can e-mail me

directly. Take care and I will talk to you soon. Love, Genny/Jodi's Mom

[Guest guest]

Hi Debbie, I most have missed that post but was talking about what Dr.

Jeffers says. He is the main man and hopefully will have answers to your

questions. Yes, we have a trip to Miami Monday. I don't know what to pray

for except God's will. If he puts Jodi on the list I will be very upset but

if he doesn't I will wonder how bad will she get before he does and how long

will it take to get a liver. I am going to talk to him about a living donor

transplant. I can't be the donor because I am over 45 but we have a very

large family. Even though I would not ask anyone to do it I know there are

members who would.........How are you feeling today? Be sure to let me know

what the doctor says. Take care and God bless. Prayers going up for you.

Genny/Jodi's Mom

[Guest guest]

Hi Debbie, hopefully you will find that the prednisone will help with the

energy problem in time. I too am very tired tonight, I took Colton to the

doctor yesterday and both ears are infected. His temperature was almost 104

yesterday afternoon when he got up from his nap. I gave him Motrin and put

him in the bath tub to bring it down. Thank God it worked and he was feeling

much better. Jodi had been up with him the last two nights so I talked her

into letting me keep him over night so she could rest. I slept with him, or

should say I was in the same bed with him but didn't sleep very much. Kept

feeling of him to be sure his temp wasn't getting high again. Jodi said he

was much better today, she stayed home with him and he was eating and

drinking plenty of fluids. Gosh I'm out of practice, my baby is 22 years

old. I guess some things you never forget. Well, better clear out the rest

of my e-mail and hit the hay. Take care and God bless, Genny/Jodi's Mom

[Guest guest]

Hi Debbie, we are not going down until Monday morning since her appt. isn't

until 2:40. At first we would drive down on Sunday afternoon and spent the

night right across the street from and Jodi would see the dr. in the

morning. We can't do that anymore because they won't give her a morning

appt. They say morning appt. are for new pts. so now she always has to see

him in the afternoon and there is nothing for us to do since check out time

is 11:00. We don't know Miami that well and are afraid of getting lost. The

hospital is in a very bad part of town so you don't dare walk around at

night. There was a very nice man at the hotel that told us that...Thanks for

the good wishes and you and your family have a great Thanksgiving. Oh by the

way is your 20 year old a boy or girl and do you have other children? Take

care and God bless, Genny/Jodi's Mom

[Guest guest]

Hi Debbie, we are not going down until Monday morning since her appt. isn't

until 2:40. At first we would drive down on Sunday afternoon and spent the

night right across the street from and Jodi would see the dr. in the

morning. We can't do that anymore because they won't give her a morning

appt. They say morning appt. are for new pts. so now she always has to see

him in the afternoon and there is nothing for us to do since check out time

is 11:00. We don't know Miami that well and are afraid of getting lost. The

hospital is in a very bad part of town so you don't dare walk around at

night. There was a very nice man at the hotel that told us that...Thanks for

the good wishes and you and your family have a great Thanksgiving. Oh by the

way is your 20 year old a boy or girl and do you have other children? Take

care and God bless, Genny/Jodi's Mom

[Guest guest]

Hi Debbie, I am so glad you liked Dr. Jeffers and he spent time talking to

you. It is good news their lowering your Prednisone to 40 mg. Jodi is now

on 10 mg. but she has been on Pred. since March. She can't take Imuran

because it made her very sick so Dr. Reidy changed it to something else. I

am eager to see what her labs were from Friday. Jodi is having a real

problem with the girl that works for her Gastro. she was supposed to have all

lab test copied for her Friday afternoon but didn't. She had asked her to

fax them to her office but she didn't do that either. So now after she takes

Colt to the sitter she has to run and get those copies before we head down to

Miami in the morning. The girl told her that she had other things to do

besides copy all of the test Jodi has had done. Dr. Reidy said he has not

received all of her test that were supposed to be faxed to him either. I

think she is forcing us to go over her head to the doctors and hopefully we

can get her squared a way. After all we pay her salary. I can get nasty

when I have to.........Well, I better get off for now but will write you

Tuesday night if I find the time.......By the way I have heard of a

Laperoscopy but can't remember at the moment what that is, please tell me.

Have a great Thanksgiving if I don't talk to you before. Take care and God

bless, Genny/Jodi's Mom/FL

[Guest guest]

> Hi Debbie, we are not going down until Monday morning since her

appt. isn't

> until 2:40. At first we would drive down on Sunday afternoon and

spent the

> night right across the street from and Jodi would see the

dr. in the

> morning. We can't do that anymore because they won't give her a

morning

> appt. They say morning appt. are for new pts. so now she always

has to see

> him in the afternoon and there is nothing for us to do since check

out time

> is 11:00. We don't know Miami that well and are afraid of getting

lost. The

> hospital is in a very bad part of town so you don't dare walk

around at

> night. There was a very nice man at the hotel that told us

that...Thanks for

> the good wishes and you and your family have a great Thanksgiving.

Oh by the

> way is your 20 year old a boy or girl and do you have other

children? Take

> care and God bless, Genny/Jodi's Mom

Hey Genny,

My 20 yr old is a girl. A very sweet one I might add :?) I'm a very

proud mother!!!

I had my appt. with Dr. Jeffers on Fri. It went very well. I was

very impressed with the organization of the whole place. Everyone

was very nice. I feel like I got great news. He told me to lower my

prednisone to 40mg. starting Wed. and add 5mg. of imuran. He wants

me to do a laperoscopy(?) after he sees me next. (end of Dec.) His

biggest concern is my diabetes on top of the AIH. He said that could

cause me the most trouble right now. He also said that it will

probably take me about 6mo. to get leveled off. That is if

everything goes OK. I feel like I finally got some answers. He sat

and talked to us for a long time. I liked that he wasn't in a hurry.

Drive safely tomorrow! I do know that it's a bad neighborhood. Let

me know how everything goes.

Debbie

[Guest guest]

Hi Debbie, sorry you are feeling so bad. Hope things get better soon. Is

Dr. Schwartz your Gastroenterolgist? I don't know how Jodi goes to work

every day because she has a very demanding job. To tell you the truth she

doesn't seem to feel that bad most of time. She has her days but by Wed. you

can tell she is getting tired.....There are a lot of test she has to get done

before meeting with the transplant team. Starting with a TB test, mammogram,

HIV, Hep. A vaccine and some kind of scan. Some of the others I can't even

spell and don't remember how to say them.....From what I understand from

Cheryl and Randy that have been through the living donor transplant I would

give Jodi about 70% of my liver. Of course they would remove hers. Cheryl

said hers grew back in about 4 weeks. And hopefully the portion I give to

Jodi would grow. That is if I am a match and if the team will consider me.

I am 2 yrs. over the 45 age limit. Dr. Reddy said that if I'm in very good

health and we are a match that he believes they might. Jodi still wants to

go on the list and see if a liver becomes available fairly soon because she

is afraid something might happen to me. She is also worried if something

happened to her she would want to know I would be here to help raise Colt. I

have peace about being the donor if it comes down to it but will have to wait

and see and put everything in the Lord's hands......Better go to bed for it's

getting late. Feel better soon. Love, Genny

[Guest guest]

Debbie: It was great talking to you on the phone. Thank God for my husband's

cell phone and free minutes. LOL I am so glad your report from Dr. Jeffers

was good. When does he want you to see him again?............Well tomorrow

is Monday again so I better say good bye for now. The weekends sure go by

fast. Take care of yourself and have a good week. Love, Genny

[Guest guest]

Hi Debbie: I just read your post about having another kind of biopsy that

was to be done today. I'm sorry I am so far behind in the group but Jodi and

I were in Miami Thursday and Friday. I had over 300 e-mails and have been

just skimming over them and I saw yours. How did it go and please explain

what this kind of biopsy is for......

My stress test was in the same building as Dr. Reddy's office and we did see

him go by but didn't talk to him. I must go for now but please update me.

Take care and God bless. Love, Genny

[Guest guest]

Hi Debbie: OK I have already told you I need the other half of my liver so

enough of the sweet talk. I wish everyone in the group could get together

for a group reunion. I know that is kinda what the convention is all about

plus new information but Las Vegas is a little out of the question for us. I

so enjoyed our time together and your pretty special yourself. How is

doing and are you still on the sticks?

Jodi and I do have to make another trip down to Miami to see Dr. Reddy.

Dr. Levi wants Jodi's Pred. decreased before the surgery and it has been a

while since she has seen him. Hopefully it will be next week but we are

having a problem getting an appointment. I called the transplant coordinator

and they are working on it. We will also need to look at some apartments.

One of the transplant nurses says we can get one on the beach for what

Towers cost, about $1,000 a month. Dr. Levi says and that doesn't

include any luxury either. She has to be within 30 minutes of the hospital

and we can't go far or we will get lost. We are small town folks and aren't

used to driving in that crazy traffic. They would have to pay me BIG BUCKS

to live there. I will let you know as soon as I find out when we will be

down. Most important they will set the date at that visit. THANK GOD.

is doing well. I talked to her and she has had a problem with her

computer but has posted a couple of times. You most have missed her. We all

need to say an extra prayer for Patty O'brien in California too. Her nose

surgery turned out to be more than she bargained for. They may have to

operate two more times, bless her heart. I told her I have a surprise for

her but I can't tell you until tomorrow in case she reads this.

You have a great weekend. Oh by the way I need a picture to go on my wall

over the computer. I have one of Patty and her husband , now I need

one of you. I think you have my address, if not e-mail me and I will send it

to you.

Hope everyone has a great weekend. Take care and God bless.

Love, Genny

[Guest guest]

OK Debbie, I know what ROFL means but what is the MAO??????? It was great

talking to you as usual, sorry you have been feeling under the weather this

weekend. Get your fanny back on those cruches some so your ankle will heal

too.

I'm so glad that your coming down while Jodi and I are in Miami, but please

only come if you're feeling OK. I talked to today as you know and she

said she may be able to come down also. I would love for you all to meet

Jodi and her you guys, she has heard so much about you that she would feel

like ole friends too.

I have a lot of mail to check so you take care and I will talk to you soon.

By the way I see the group address now so I will also ask my mother-in-law

to keep the group informed of our progress as you asked. Patty in the group

e-mails her all the time so she already knows someone in the group.

Love, Genny

[Guest guest]

OK Debbie but if I see drool your outa there. I am going to get Jodi to draw

on my stomach with a marker, DO NOT LET DEBBIE HAVE WHAT'S LEFT OVER. But

I'll tell you what, I will leave it to you in my will so if you get a call

you better hurry on down.

Love ya, Genny

[Guest guest]

Ms. Genny,

I finally " got hold of my liver " and remembered that you're just

little bitty thing. Your liver wouldn't be big enough. Especially

when Jodi's already taken a bit hunk out of it. Besides that, if I

take what's left over we would have no more Genny and I just can't

have that. I need you to terrorize and drive crazy.

Your sweet, cute, loving friend,

Debbie/FL

PS I'ld still like to see the doctors faces when they see that

written on you stomach. ROFLMAO (you do know what that means)

:?)

Babycolt98102690@a... wrote:

> OK Debbie but if I see drool your outa there. I am going to get

Jodi to draw

> on my stomach with a marker, DO NOT LET DEBBIE HAVE WHAT'S LEFT

OVER. But

> I'll tell you what, I will leave it to you in my will so if you get

a call

> you better hurry on down.

> Love ya, Genny

[Guest guest]

Your so right Debbie, you don't want any of this tiny little ole liver of

mine. I guess that would be called left overs anyway. LOL

Yes, I know what that means now. I can't help that I have lived a

sheltered life. My mom believed in that soap in the mouth trick.

Love, Genny

[Guest guest]

Hi Debbie,

We really DO have to keep a sense of humor about all this, don't we?!! BTW, what are you doing up so late? I'll send Mr. Sandman down your way right after he helps me to sleep!

[Guest guest]

Hi Debbie: Sorry I missed your phone call. No, I haven't been doing to much

running around. My step-mom did take me to the new Dollar Tree here in town

yesterday and and I went to church last night. I have tried to walk a

lot to get this ache to go away from my lower right side. I'm sure glad they

don't have to drain any fluid off too because everyone has been so nice to

tell me how painful that is. I still am a little short of breath and there

still feels like there isn't enough room for my lungs when I take a deep

breath. I'm sure in time all these strange feelings will go away.

Jodi has another infusion tomorrow so I will go over and watch Colt. The

first time driving in six weeks, knees will feel like jelly. Jodi had her

blood work done again today, hope it's as good as last week. She is running

circles around me.

Hope you're feeling better today. Haven't been on the puter much the last

few days. I need to shape up cause I'm going to work some 1/2 days next

week. It is going to be hard to get back into the swing of things. I also

have brain fog, guess from the surgery but it better clear out fast.

Will talk to you later Debbie. Also Rosemary tell Hunt I'm sorry he is

feeling bad.

Love, Genny

[Guest guest]

Hi Debbie, It's strange but until now (if this is indeed the problem) he has never had any side effects for the reducing of his meds. Is it just when you get to the really low mgs of pred that you have side effects, like 15 and below. He has never been below 10mgs and that was only for 2 days before he had a flare-up. That was a year ago and they have up'd his imuran since then so hopefully he can go lower this time. He is now on 15mgs and has been since June 8th and if he tests come back fine he will drop to 12.5. To tell you the truth I might even tell him to alternate it with 15 for a couple of weeks and then drop to all 12.5. I really want him to go slow, seems to be the best from what I can see.

Take care, Rosemary

[Guest guest]

Debbie, Has you had it easier this time this you alternated for a month before going "just " 10 mgs? In what way?

Rosemary

[Guest guest]

That's how I did my reduction from 15 to 12.5. I alternated for 2wks

and then went to just 12.5. I wish I would have done it for longer

than 2wks. I had a rough time at just 12.5. I did the same thing

going from 12.5 to 10. Alternated first for a month and now trying

the just 10. I hate it.

Debbi/FL

> Hi Debbie, It's strange but until now (if this is indeed the

problem) he has

> never had any side effects for the reducing of his meds. Is it just

when you

> get to the really low mgs of pred that you have side effects, like

15 and

> below. He has never been below 10mgs and that was only for 2 days

before he

> had a flare-up. That was a year ago and they have up'd his imuran

since then

> so hopefully he can go lower this time. He is now on 15mgs and has

been since

> June 8th and if he tests come back fine he will drop to 12.5. To

tell you the

> truth I might even tell him to alternate it with 15 for a couple of

weeks and

> then drop to all 12.5. I really want him to go slow, seems to be

the best

> from what I can see.

>

> Take care,

> Rosemary

[Guest guest]

Rosemary,

That's hard for me to answer. I haven't had the best of weeks so far

and I usually have a really hard time about a week after I started.

That means if I make it through this weekend feeling pretty good then

yes. If not, it didn't help. Too soon to tell. Sorry. I will let

you know.

Debbie/FL

> Debbie, Has you had it easier this time this you alternated for a

month

> before going " just " 10 mgs? In what way?

>

> Rosemary

[Guest guest]

Let me add. I do think the alternating makes it easier. If I

would've gone straight to 10 I know I would have been MUCH sicker. I

was when they tried to take me from 15 to 12.5. Ended up having to

go back to the 15 for a while. My brain fog is running rampid so

forgive me if I get off track.

Debbie/FL

> Debbie, Has you had it easier this time this you alternated for a

month

> before going " just " 10 mgs? In what way?

>

> Rosemary

[Guest guest]

Debbie,

I will be praying that everything will go smoothly during your biopsy.

Carol

dfisher4140 wrote:

> I just got the call. My biopsy is scheduled for next Wed. at 6 a.m.

> I think we're going to go down the night before. It takes me an hour

> and a half to get to Miami. I think it would be easier. That way we

> won't have to worry about traffic. Yea, traffic at 5 in the

> morning. Who am I kidding. Not even in Miami.

> OK, I'm scared. I didn't realize I would have to stay all night. My

> aunt just had a radical masectomy and they were going to do it out-

> patient. Sometimes I just don't understand.

>

> Debbie/FL

>

>

>

[Guest guest]

Hi Debbie: Yes you and I have been playing phone tag. I'm so glad your biopsy showed the liver isn't getting any worse. THIS IS VERY GOOD NEWS!

Sorry to hear about 's broken heart. Boy with a best friend like that who needs enemies. Please tell her for me that it's hard now but he just wasn't her soul mate that God has picked for her. He must me the run around type so this girl will get hers too.

Hope everyone is having a good weekend. Take care and God bless.

Genny/Jodi's Mom

Living Donor Transplant 5-18-01