Re:

[Guest guest]

my mom had a cat climb up under her truck into the spare tire spot... She

couldn't get him out. He drove around town that day and about an hour after she

got home he jumped out.

Kerri

Re: Re:

>

> Hey! I did that once, just recently! Except it wasnt my phone...

>

> I put my purse on my trunk and proceeded to drive Jacqui to school!!!

>

> Yep. It was still there when I got there. Bizarre.

I once followed a woman home who had done that. I was honking and waving

and calling out the window to her; figured if it fell off, I'd pick it up

and follow her to wherever she was going.

Must have terrified her though I don't think I look very frightening. I did

pull up to her house and explained why she was being following by a honking,

waving, calling lunatic.

Salli

[Guest guest]

Thats fantastic. Your all still in our prayers.

hillbillybob

just a quick update for everyone...great news! the hospital discharged jason today! the girls will be hiscaregivers while he stays in the hotel. jim is also doing very well - hewas put on solid foods for lunch today! though, he will miss the littlevisits from jason, having been only three doors down. i will update youfurther later on today.love,maureen

[Guest guest]

We are like family and worry if we don't hear

from

> any of our members. Even if it's just a quick hello.

>

Hi,

I know what your saying and I'm truly sorry for not posting sooner. I should have some news tomorrow once we get back from Miami.

Take care,

[Guest guest]

,

Happy anniversary. How are those single digits doing up there? We hit

27F. Holy cow, I about froze to death :-). It didn't snow like they

promised - okay you and the other Yankees might not call it snow, but we

southern boys consider anything falling out of the sky that is white,

snow.

Darin

[Guest guest]

We had sunshine today, but it still was cold. I heard

South Carolina got snow, 3 inches and it shut down the

airports and towns. We don't even get the plow out

for 3 inches.

Petoskey has 8 feet since Christmas Eve and that is

where we are going tomorrow. I better not stray off

any trails or they won't find me until Spring.

That much snow reminds me of the time I went hunting

with my dad in the UP. It had snowed and there was

3.5 feet of snow. There was no way I was going to be

able to walk back to my blind. So before I got up

there my dad shoveled paths in the woods for us. The

paths were only as wide as the shovel, but, they were

wonderful. Opening evening my dad shot a buck, and it

was getting dark and we had a one wheel cart to put

the deer on to get him back to the cabin. Dad's

flashlight failed, and I had mine, which was a gift

from my son, but the battery was low (I never checked

it since it was new), so here we were in the dark,

huffing and puffing to pull this cart down this narrow

path without light, and we couldn't see the path

well, and I fell off the path into the snow, and then

my dad did, so we sat there laughing our butts off,

and I said, " I sure hope there aren't any deer around

because they would be laughing at us too. " And dad

said, " I'm glad there aren't any people to see this. "

and we laughed some more. We finally got the deer

back to camp, had a nice dinner and hit the sack.

I'm not a tall person so 3.5 feet of snow is up to my hips.

=====

in Michigan (Dx UC 1984, Dx MISSING COLON 1999, Dx PSC 1997, PSC symptoms

2000)

__________________________________________________

[Guest guest]

> Did your daughter have a tx or was she taking the prednisone for UC

> I did not gain weight from it - 3 months(20, 10, 5 , 2.5 and now

> nothing)but I feel like my face and torso is getting hairier.

Luckily

> it is very blonde, but I can see lots of real little ones where I

> dont recall seeing them before.

> It seems rare to hear from a female who has it, especially so young

>

Dorothy(age 36, light uc since age 18, psc 6 years I think)

Dorthy, was first diagnosed in the fall of '99 with what they

thought was AIH.She has been on Prednisone since then & was in the

hospital 7 different times for many days this past year & was

offically diagnosed by a competent Dr. at a large Children's Hospital

with PSC & UC.She's had 7 veins banded this past year & (crossing

fingers) is feeling pretty good.Her labs are not great,Low WBC,low

platelets,high Pt,-but we've seen worse & better.I think it just goes

with the disease.Her colon has actully been behaving itself & right

now she goes once a month for check-ups.It's hard,but at least she is

having more good days than bad.She's usually tired,she couldn't play

basketball this year because she couldn't keep up.The coach would

have worked with her-but she's a all or nothing kid -she hates to be

different.Sorry I've been rambling

Yes, has more darker hair & at one time it looked like she

was growing sideburns(on 90mg. IV Prednisone-she was REALLY in bad

shape then),but it's better now.

[Guest guest]

,

Early stages is when a pscer does not have much damage to the bile

ducts, is not showing any symptoms, ex itchy skin, fatigue. Although

you can still be itchy and fatigued and be in early stages.

Did the Dr say how long he thought would go without a

transplant? Did he say how much damage there was to his bile ducts?

What Meds are he on if any? Most of the people with psc have crohns

disease or UC (ulcerative colitis) does have either?

in CT, wife of Tony Dx w/ Crohns 1979. Dxed with PSC 1993,

mother of 2

Give the gift of life

Sign your organ donor card

Tell your family you want to be an organ donor

> ,

>

> Thank you for you e-amil. What is considered the " early stages " of

the

> disease?

>

> ~

[Guest guest]

You requested information on books you could read. Faith sent this

Darin

Barby- I have yet to meet a M.D. of any kind that knows anything about

nutrition. They normally study about 3 min. of basic stupidity unless

they pursue anything on their own. The reason why dairy products are so

rough is because of the mucous that they create in your system. I'm

sorry, I have become very judgemental after dealing with so many of them

who know so little of the real basic stuff. It seems that none of them

recommend diet change as important to those with compromised livers when

it is so obviously  a major factor. When we first found out that

was really sick-he was very sick and jaundiced. Tom stumbled into the

library one day after crying and praying for wisdom all day. A very nice

lady put alot of effort into helping him find books relating to the

liver. When she gave him one of the books it  fell open to the chapter on

PSC. He felt sure that it was divine guidance, not to mention that when

we followed her diet guidelines began to appear and act like

himself again, (levels almost normal). He has had ups and downs here and

there but when I am really strict about his diet he does amazingingly

well,and believe me that is not easy for a six-year-old (7 on Dec 1) to

live with! You have heard me go on about this book before, but I'm

telling you it is full of info. and very easy to read. If I were wealthy

I would send everyone in this group a copy of it.

But if you just wanted an intelligent answer to your question (instead of

my ramblings :-)

you can actually ask Dr. Cabot such questions on her websites. I'm sorry

I don't know how to cut and paste but here they are-

   www.sandracabot.com

    www.liverdoctor.com

     www.whas.com.au

The book is called The Healthy Liver and Bowel book . Faith Scheidt.

('s mom)

_

[Guest guest]

Get a notebook and write down the questions in it. When ever you

think of somethng write it down for the next appointement.

If Ercp was done I'm sure the Dr will tell youif there is any damamge

to the dile ducts, if tey are beaded or partically closed or what?

Be sure to ask how long he thiks will live before needing a

transplant(he probably wont know that unless ercp is done) Start a

journal and writing about how is feeling when he doesn't feel

good, when he goes for tests.

Here is another positive note. They are making big strides in

transplants. I believe the survival rate of making it through a

transplant is 80 % or more. Those are good odds. THere are also

many studies being done looking for something to slow the progression

of the disease as well.

Good luck at the Dr and keep us posted.

in Ct wife of Tony

[Guest guest]

Welcome ...

I have just come back after a time away due to computer problems...so I am not up on all the e-mails...I don't think I have read one from your wife...although I have only been back on for a couple of days....

You will see that most here also have UC or Crohns and some have been thru the same procedures you have been thru....and those people will be answer your quesions best...

I'm a mom here....my son who is 19 has Crohns and PSC...along with a couple other auto-immune diseases....My other son who is now 23 has UC since he was 3...and has no other problems....You find a wide spectrum of problems and the way they are handling them....meds that they take and tests that we all seem to share at one time or another....

You will find alot of support here and hopefully you will make some new friends....all over the country....

Tyler takes Urso and doesn't have any problems with it...so hopefully you will have success with it also....

Again welcome..and hopefully I will see some e-mails from Kathie

Luanne Ty's mom

[Guest guest]

,

I am excited to hear that you and have decided to try and have kids

again. If he is relatively asymptomatic (slight fatigue) you should move

forward. You wait too long he will complain of being too tired to change

diapers or get up for the am feeding (given that formula is used - as you

might have seen, if I leave myself open for sarcasm or ridicule, some in

the group will take advantage of the opportunity :-).

Darin

[Guest guest]

Darin,

Right you are! I will NOT let use this excuse to get out of getting

up with a baby! NO WAY! =)

Are you and your wife thinking about kids in the near future? Sounds like

you were told 1 yr. post tx. When is that?

~

>

> ,

> I am excited to hear that you and have decided to try and have kids

> again. If he is relatively asymptomatic (slight fatigue) you should move

> forward. You wait too long he will complain of being too tired to change

> diapers or get up for the am feeding (given that formula is used - as you

> might have seen, if I leave myself open for sarcasm or ridicule, some in

> the group will take advantage of the opportunity :-).

[Guest guest]

I was tx on 11/04, so I haven't scribbled on that date to start having

kids. Although, I have marked that I will be a very mature 1 year old and

have already started putting together my wish list for my second birthday.

Once the dr gives me the ok we will start (not sure if we will have to go

to a fertility specialist or not - she has endometriosis). In the

meantime, we will just continue to practice for practice makes perfect.

Darin

[Guest guest]

Oh hec Barb.......do you really think that I would make a " new years "

commitment??? I promised myself to stop smoking at " 40 " - yeah, I have 10

months to mentally and physically prepare for it:) Although, I have to say,

I have been a lot better about not smoking at work. It smells awfully gross!

Darn habit! Larry has been working on me for months!!!!!! (gotta love him:)

I saved a lot of info. from him and when the time nears I will refer back to

ALL the helpful info. he sent me:)

Sincerely, wife of dx 97

[Guest guest]

Heh would it help if Mom Peg tells you " Ya just

gotta stop it " ? Since I've been having a real weight

problem, I have more sympathy for people that can't

quit unhealthy habits. It's hard and we are praying

that you'll make it. We love you too much for you to

be distroying your sweet little body.

Mom Peg

__________________________________________________

[Guest guest]

Hey...

You are sounding better and from your last email you are looking(color wise) better....yellow is a tough color to carry off....

Glad you are feeling better about the posibility of another tx...but things are also sounding better....are your labs getting better...that would be great....

I bet those nice long hot showers feel so good....

Take care...

Luanne Ty's mom

[Guest guest]

Hey

Good to hear from you...I have been mostly lurking...but have not seen much from you lately....so it was nice to see that you are still around...LOL

I think from what you told us about Connor and his study habits...just proves that the nut does not fall far from the tree....YOU ARE HIS MOM....LOL....Love it....

I think you need to read more of his homework for our TGIF's....

Luanne Ty's mom

[Guest guest]

Glad to hear about 's continued progress. Hope you can get the rest you

so need and deserve, Ruth.

Continue prayers are going up for you. and your family from New Jersey.

Janet from Jersey

****************************************************************

This e-mail and any documents accompanying this e-mail contain information which

is confidential and/or legally privileged. The information is intended only for

the use of the individual or entity named on this e-mail. If you are not the

intended recipient, you are hereby notified that any disclosure, copying,

distribution, or the taking of any action in reliance on the contents of this

e-mail information, is strictly prohibited and that the documents should be

returned to Saiber Schlesinger Satz & Goldstein, LLC immediately. In this

regard, if you have received this e-mail in error, please notify us by return

e-mail or telephone () immediately, delete the e-mail and all

attachments and destroy all hard copies of same.

>>> Ruth 02/06/02 01:05PM >>>

Hello all,

I'm home for a " nap " . As you know, was

transplanted yesterday, about 8 1/2 hours this time.

Lots of interesting stories leading up to, like

getting pulled over on his way home to get to the

hospital and having to give the cop a lesson on liver

disease and billirubin. Telling him " dude, I have to

go get a liver transplant " ,,,,anyway

For a comparison, yesterday his billi was 20, this

morning it's 5. something. White count has gone up to

6 with no help. Now for the fun. Dr. said his liver

was green and mushy. BUT, the spleen, normally smaller

than a fist or so, was actually LARGER than the liver.

Weighed about 2kg the dr. said. So, obviously it was

good that they took it out. He's already off the

respirator which is a couple of days quicker than last

time.

I've been up basically since work Monday morning, so I

must go lay down. Thank you for all your support and

continued prayers. He took his teddy bears and I had

bought a new one, nearly life-sized and had it in my

trunk. I brought it in when we left for the hospital.

I got to carry it around all day while we were between

rooms. Startled a few people I think.

Dorothy, great news. All of you are wonderful. I'll

try to keep you posted.

Ruth

__________________________________________________

[Guest guest]

Andi,

Check post #34107 from Barb.

Joanne (Todd's mom)

[Guest guest]

Hi everyone!

Still waiting to hear from the doc this afternoon. Thanks for all the help!

Leona.....you let the cat out of the bag, except for one thing. Im not sure

if it is technically our 10 year annivesary! (LOL) We were married on

Feb.29TH 1992- Leep year! loves it, that brat. Says he only has to

get me a gift once every four years! What the hell was I thinking when we

set that date????? Must of been because my hormones were out of whack. I

was a few months pregnant at the time. No " white wedding " for me<grin!

Hope everyone has a TGIF kind of day! Sincerely, wife of dx 97

(waiting for his lab results today to find out what could be causing the nose

bleeds)

[Guest guest]

Hey there...haven't heard from you in along time...glad to see that everything is going pretty good...except for the nose bleeds but it looks like that too will be taken care of....

Feb 29th for your wedding...what were you thinking...I think your are right about your hormones...LOL....well happy 10th kind of anyways...

ours is coming up in March....planning on doing something for the day...not sure what right now though....

how are the kids...wow...If I remember correctly your daughter will be graduating this spring...right....a whole new world for her and you...believe me....

talk to you soon....

Luanne Ty's mom

[Guest guest]

Hey there...haven't heard from you in along time...glad to see that everything is going pretty good...except for the nose bleeds but it looks like that too will be taken care of....

Feb 29th for your wedding...what were you thinking...I think your are right about your hormones...LOL....well happy 10th kind of anyways...

ours is coming up in March....planning on doing something for the day...not sure what right now though....

how are the kids...wow...If I remember correctly your daughter will be graduating this spring...right....a whole new world for her and you...believe me....

talk to you soon....

Luanne Ty's mom

[Guest guest]

Hey ...

That is really funny...the boys having alot in common....Ty just bought his jeep ..just before graduation...last yr....

He was planning on going away to college...but his senior yr he was in the hosp most of the time and it was not in the cards...so he is going to the county college here...which allowed him to have the money to buy the jeep....now he is doing all fun of looking and studying everything that he can find out about it...He has a jeep wrangler...I forget...either a CJ or YJ...I think...its a 93....

my daughter lives in Chicago and she and her boyfriend just bought a jeep cherokee...and they have gone off roading with it a couple of times ...they are coming home next month for a couple of days...and I am sure the guys will have some fun...although I worry about him when he is out there in the woods....He has a spleen problem and is supposed to wear his spleen guard when he is out there ...but I know he doesn't...really hates it...but like you said....you can only do so much...when they are this age and pretty much on their own....

when goes to school will it be far....

well have so much to do today...talk to you again soon

Luanne Tys mom

[Guest guest]

Andi,

At first I wasn't able to eat. They attempted to put a stent in but couldn't get one in so they just surgically opened the pancreatic duct. Still couldn't eat. Put me on TPN for 3 wks. and my liver went nuts, and as a result I became sepsis (not due to the HOHN catheter, but PSC). Still couldn't eat. At 5'8" I weighed 102 pounds as apposed to my 125. (Wasn't pretty!) FINALLY, they put me on MT16 enzymes. Four years later I must say I do not take them with every meal. I only take them when not feeling well or if I think the fat intake will overwhelm it. They did an ERCP in 1999 and there was a backlog again, but opted not to stent me at that time (does that sound obscene?). But, in Nov. it had to be done along with my gallbladder. They were only in for 7 days and that was long enough!!! I told my husband it was like being in labor for 7 days!!! I had contractions as if I were giving birth. In that amount of time I could have had a litter! Then the pancreatic enzymes went up and the pain began. They wanted to remove my gallbladder to see if that helped with the pain, but I'm still hanging on to it. I am eating better than in Nov. and watching my fat intake. MT 16's are always on stand-by. Sometimes when I don't take them, I wish I had but I would like my body to function as much as possible on its own. Some day I may not have a choice but to take them with every meal again, but for now....

I honestly don't know how you can have a stent in for any length of time! Your right it is a weird pain, but not in a positive way!!! I really don't care to ever have one again, but a woman's got to do what a woman's got to do.

Will yours remain or are they planning to take them out? My doc says people don't do well if the stents are left in more than 6 wks. Let me know, I'm curious.

Take care,

[Guest guest]

,

Very interesting. I think its possible we both may have pancreatic damage. I have read that it is part of PSC. It was in a Pub Med article. Anyway I really cant digest anything. So do you have "Malabsorption Syndrome"?. We have quite a bit in common as far as what we have been going thru. Gosh, I had lost so much weight that I looked like a "Dachau" survivor. At one point just under 96 pounds. Iam 5'4". It was horrible. I looked at myself in the mirror one day and my ribs were protruding, my breasts were gone, my face was hollow and I had awful grey shadows under my eyes. I felt terrible as well. Iam now on Ensure. I can barely eat now, because it hurts when I do. I dont know why. Cant tell if it is the stent or my pancreas. I have quite a bit of bile duct stricturing but no cirrhosis or fibrosis yet.

As far as "contractions". YES!. That was the word I was looking for to describe "stent Migration". Isnt that the weirdest feeling in the world?. When Iam getting ready to lose a stent that is usually the feeling I get.

Could you tell me a little bit more about your enzymes?. How do they help you, and if you dont take them what happens?. If you dont mind my asking.

Thanks, and Iam glad you are in the group. Your one of the few people I have met dealing with chronic pancreatic problems related to PSC. Sharing your story is going to help a lot of us.

Andi