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Peg--

I did go through the evaluation process almost a year ago - 3/99. At that

time they couldn't make a determination one way or the other, so decided to

keep a close eye on me. The dr. who saw me in the hosp. asked if I had had

my liver eval yet & I told him it was about a yr ago. He asked what the

result was and I told him. His response, " We'll get that going. You're

fading on us. " Not what you want to hear. I am on the list now. Status 3

- they anticipate less than 1 yr. can't be a 2B unless in hosp. they say.

They sent me home even though I had fever & chills. I'm on Cipro 500 mg 3 x

a day. My abdomen is so distended it is miserable - like I'm PG and I am not

kidding. Even my back hurts from the stretched abdomen. I know they dilated

a dominant stricture & a few others, but there were others they weren't able

to do. I don't think my abdomen should be like this this long. According to

my Mayo medical book, distended abdomen is one of the signs of pancreatitis.

If not better by tomorrow afternoon, I'm calling over to Omaha and maybe

they'll have me go to hosp here in DSM. I can't even wear anything over than

a nightgown or lounge shirt - cuts in big time.

Thanks for your concern.

Laurie

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Aubrey--

Thanks for your words of encouragement. Right now I just want to get back to

the way I was before I went over there. It is really hard being " listed. "

Have had a couple of crying jigs with more to come, I'm sure.

Laurie

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I don't believe that about the 2B, Russ is a 2B, is a 2B and she looks

great and doesn't have near the problems you are having. Something is wrong

with

this picture. But you do have to be on the list and Jacquelyn says you can

never

be transplanted as a 3, course now that you are listed they can but you up to 2B

at anytime. I just don't know what they are waiting for.

Can't you go back to Mayo? Ask Tim, I know he had mentioned that he was very

distended and had to wear suspenders. (I look like I'm pg and have no good

excuse - it's a depressing feeling). Especially when you are hardly eating. I

think you left the hospital too soon. The IV antibiotics work much better than

the oral drugs and much quicker. Be careful pancreas problems can be real

serious. Don't give up pushing them until they find and answer. I will be

praying for you constantly. Please keep me informed. Sorry to seem so pushy

and

negative. But I get so frustrated knowing how sick you and Jacquelyn are and I

can't do anything to help, so I nag at you to push the doctors to take care of

you and let me know if there is anything else I can do for you. Hope and PRAY

that you get better and that God will give you the strenght (and Steve too) to

get through all of this.

Love,

Peg

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As Tim has mentioned, you can be a status 2B and not be hospitalized,

although a lot of 2Bs are sick enough to be hospitalized at least

intermittantly. You can also be a status 3 or even not listed and be

hospitalized.

You can also get a transplant as a status 3 but this is getting more rare

these days. got hers as a 3 but that was sort of a fluke based on her

size and blood type. Plus she had to wait 3 years.

Thinking back to the original message, I believe that the transplant center

said that there would be a 1 year wait as a status 3. Sorry to say, this

sounds really low to me. Maybe the waits are lower in Nebraska, I don't

know.

You might want to have a more in depth conversation about this with the

coordinator who is responsible for pre-transplant liver patients. Sounds

like whoever provided the info might not have been all that current on the

rules and waiting times.

Thanks Roy T.

PS the pancreatitis is a not-too-infrequent complication of ERCP. When

had her first ERCP, she started feeling really bad that night so they

had her come back to the ER and hang around for observation. It turned out

that she was OK but they were worried about the pancreatitis. The

hepatologist who did the ERCP even came in to check on her at the ER in the

middle of the night. I'm pretty sure he got up out of bed just to come in

and make sure she was OK. He has turned out to be one of our

favorites....although we hope not to see him any more!

----- Original Message -----

From: Phil & Peggy Alfeld

> I don't believe that about the 2B, Russ is a 2B, is a 2B and she

looks

> great and doesn't have near the problems you are having. Something is

wrong with

> this picture. But you do have to be on the list and Jacquelyn says you

can never

> be transplanted as a 3, course now that you are listed they can but you up

to 2B

> at anytime. I just don't know what they are waiting for.

>

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Peg--

Tks for your words of concern. Actually, I just canceled my Mayo appt for

2/22--dont feel up to another trip. Omaha said that they do tx Status 3s and

they anticipate me going through it " within 1 yr. " One dr even said as soon

as 8 months. It depends on body size, blood type, etc.. They said I have a

very good blood type (A+) and due to my small frame is in my favor as well.

They are keeping a close eye. Had more labs done Mon. 2/7 re: pancreas & it

should the Amyalse (sp?) almost to normal and the Lip___ (can't remember) was

still a little elevated. The dr here called the Dr in Omaha & Omaha said

that they did a lot of manipulating during the 2 ERCPs and that it will take

awhile for the distention (they are chalking that up to inflamation) to go

down & the fevers I am told can be due to inflamation. I'm to go back to

Omaha next week if not better - but I don't plan on it. Feeling like I might

be starting to turn a corner just the fact I am sitting here. Thought I'd

force myself to sit upright for awhile.

Sorry for the long post, everyone.

I appreciate your concern & prayers, Peg.

Laurie

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Peg--

Actually, the dietician gave me samples of Ensure and Boost and told me I am

to eat every HOUR and at four of these times I am to have 2 cans (1/2 can

each time). In addition, with the 4 oz supp. drink I am to have a supp. bar

or cheese & crackers, some snacky nutritional thing. I haven't started on

the every hour bit yet because of the distention, but today I'm trying to

have a couple snacks between meals.

Speaking of which, I guess I should go eat a " lunch " of some sort. Thanks

for your concern and help.

I'll post later about the ERCP results. - remind me if I forget. Lunch & nap

for now.

Laurie

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Laurie,

Glad you're feeling good enough to post. We'll keep praying for you. How about

drinking ensure would that be easier than eating.

Peg

Oceandrmer@... wrote:

> Peg--

> Tks for your words of concern. Actually, I just canceled my Mayo appt for

> 2/22--dont feel up to another trip. Omaha said that they do tx Status 3s and

> they anticipate me going through it " within 1 yr. " One dr even said as soon

> as 8 months. It depends on body size, blood type, etc.. They said I have a

> very good blood type (A+) and due to my small frame is in my favor as well.

> They are keeping a close eye. Had more labs done Mon. 2/7 re: pancreas & it

> should the Amyalse (sp?) almost to normal and the Lip___ (can't remember) was

> still a little elevated. The dr here called the Dr in Omaha & Omaha said

> that they did a lot of manipulating during the 2 ERCPs and that it will take

> awhile for the distention (they are chalking that up to inflamation) to go

> down & the fevers I am told can be due to inflamation. I'm to go back to

> Omaha next week if not better - but I don't plan on it. Feeling like I might

> be starting to turn a corner just the fact I am sitting here. Thought I'd

> force myself to sit upright for awhile.

>

> Sorry for the long post, everyone.

>

> I appreciate your concern & prayers, Peg.

>

> Laurie

>

> ------------------------------------------------------------------------

> eLerts!

> It’s easy. It’s fun. Best of all, it’s free.

> http://click./1/1234/4/_/24674/_/950118159/

>

> -- 20 megs of disk space in your group's Document Vault

> -- /docvault//?m=1

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Laurie,

Have you gotten over the fever yet. Wish I didn't want to eat. (not at the

price

your paying for not wanting to) Actually I don't want to eat dinner and stuff I

want to eat sweets.

You need to eat so you can build yourself up for your surgery but you've already

been told that. Phil has finally gained his weight back that he lost (course he

eats like a pig). He's even getting a tiny roll above his waist, well not

actually a roll but there is something to grab onto. His chest still looks so

emaciated though. He has no muscle and with not working the most he does is run

the vaccum.

Well just keep trying. A few bites at a time.

Peg

Oceandrmer@... wrote:

> Peg--

> Actually, the dietician gave me samples of Ensure and Boost and told me I am

> to eat every HOUR and at four of these times I am to have 2 cans (1/2 can

> each time). In addition, with the 4 oz supp. drink I am to have a supp. bar

> or cheese & crackers, some snacky nutritional thing. I haven't started on

> the every hour bit yet because of the distention, but today I'm trying to

> have a couple snacks between meals.

>

> Speaking of which, I guess I should go eat a " lunch " of some sort. Thanks

> for your concern and help.

>

> I'll post later about the ERCP results. - remind me if I forget. Lunch & nap

> for now.

>

> Laurie

>

> ------------------------------------------------------------------------

> Unique Valentine gifts, available now at eGroups.

> http://click./1/1154/4/_/24674/_/950123562/

>

> -- Create a poll/survey for your group!

> -- /vote?listname= & m=1

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