New Member

[Guest guest]

Dear ,

Hello! My name is Jacquelyn, I am 27 years old and have been diagnosed for 8

years with PSC. Against doctor's recommendation, but giving God all the

glory, my husband and I have had 2 healthy miracle babies. is 4 and

Calvin is almost 2. I actually went into remission during the pregnancy b/c

their livers filtered the toxins for mine. My OB/GYN was very nervous through

the entire pregnancy and we ended up delivering both babies very early, but

they are fine.

The only advice I can tell you is to trust in God with all of your heart and

let Him be your confidence. Pray about it and let Him show you and your dear

husband the way to go. He's always faithful.

Now I am Status 3 at a huge hospital in Texas and the list is extremely long.

I've been on the list for 16 months and still no word (and no beeper) but we

just stay focused on our precious little family and on all of the blessings

we've been given.

Take care and I'll be praying for you,

Jacquelyn

------------------------------------------------------------------------

[Guest guest]

Jacquelyn--

What is it that " tipped the scales " that put you on the list for

a transplant? Any clue as to the waiting time?

I agee with you--you have to put your life and concerns in God's hands.

Though, I must admit, it's awfully hard to at times. I will say, though, that

since joining this group and being able to share experiences and faith, that

I feel a little more at ease w/my health situation.

Take care everyone.

C.

------------------------------------------------------------------------

[Guest guest]

,

The " tipping of the scales " was my recurrent cholangitis infections. I

have 5-6 per year that land me in the hospital.

Take care,

Jacquelyn

------------------------------------------------------------------------

[Guest guest]

Jacquelyn -

I've only had that once to where I had to be hospitalized. Was

on IVs for over a week. Had liver surgery after that. I was the

first one (lucky me) to have my gall bladder used as a patch over

the top of my main duct into the liver. I couldn't believe I was the

first one since I was at Mayo Clinic in Rochester, MN. The

surgeon was pretty happy w/himself when he came out after the

surgery & reported it to my husband. That was in '89 and no

cholangitis episodes bad enough to hospitalize me. I know that

has slowed up my transplant situation, but I'm getting closer again.

C.

------------------------------------------------------------------------

[Guest guest]

Dan Bertles wrote:

>

> ,

>

> I don't mind others joining the group, but do feel that this is for PSC, not

> other liver diseases. If that standard is kept, then great. This doesn't

> mean that we only talk about PSC, but the group shouldn't be diluted

> especially if support is offered with other groups.

>

> Once again my $0.02

>

> Dan

>

> > Re: New Member

> >

> > What does everyone think about a person that doesn't have PSC joining the

> > group? I will add her name if you all would like. I am not trying to

> > keep

> > ANYONE from joining this group..but my original reason for creating it was

> > for

> > " patients, and family members of patients with Primary Sclerosing

> > Cholangitis "

> > I will do what everyone thinks is right.

> > Love,

> >

> >

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

> > Fresh flowers are the perfect way to say " I love you " .

> > Shipped direct from the grower, Proflowers.com has

> > arrangements from $29.95 plus S & H.

> > Click here: http://offers./click/216/0

> >

> >

[Guest guest]

Dirk,

I don't think we should open ourselves to support all liver disease

patients. It's not that I don't care, nor is it because I don't think we

have anything to gain from research, discussion, etc. I left the Liver

Support group (LiverSupport-L@...) because I got bogged down

with all the other issues and all the other e-mail. If we accept all liver

diseases, why does this group exist? LiverSupport-L does that. I was very

grateful to for starting this group. It's more intimate and more

specific. I like that!

Penny mentioned in a private e-mail how fast this group is growing. I'm

beginning to loose track of who some of the new people are. If we keep this

group to PSC, we will still be able to know each other without getting lost

at least for a while longer.

The person who requested to join has PBC, but wanted to join to provide

information to others who have PSC who are not on this list. I think anyone

should be more than welcome to join especially for that reason, but let's

not water down the intimacy by doing what is already being done somewhere

else.

Well, this was far more than $0.02 worth; maybe a buck fifty. Sorry.

Dan

> Re: New Member

>

...I would recommend we open ourselves to support of all liver

disease

> patients. One of our biggest tasks is simply getting the word out, and

> ensuring that more organs are available through donars by the time each

> of us (if ever) is in need. The more people informed, the more family

> members and friends can join our circle.

>

------------------------------------------------------------------------

[Guest guest]

I was gonna put together a reply on the " opening to non-PSC folks " issue,

but when I just read Dan's I found he has done it for me. I agree with his

comments - I, too,left the LiverSupport-L group because there was more

non-PSC stuff that wasn't relative than there was PSC stuff.

I like the idea of this being open to anybody interested in PSC even if they

don't have it, but don't think the topics should get off onto liver diseases

other than PSC.

That's my $1.50 (borrowed from Dan).

Bill

> Re: New Member

> >

> ...I would recommend we open ourselves to support of all liver

> disease

> > patients. One of our biggest tasks is simply getting the word out, and

> > ensuring that more organs are available through donars by the time each

> > of us (if ever) is in need. The more people informed, the more family

> > members and friends can join our circle.

> >

>

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

> Fresh flowers are the perfect way to say " I love you " .

> Shipped direct from the grower, Proflowers.com has

> arrangements from $29.95 plus S & H.

> Click here: http://offers./click/216/0

>

>

[Guest guest]

On this subject I think it might be a good idea to come up with a FAQ

(frequently asked questions) and maybe statement of the purpose of this

group that we could post periodically and maybe put on our website.

What do you all think? We could post potential questions and answers,

and try to come to a concensus on the final form of the FAQ. Here are a

few starters that I thought of.... (note that the answers are just my

opinion and can be altered or totally changed based on the wishes of the

group)

Q. Who is this group open to?

A. PSC patients and their friends and family members. People with

related diseases are welcome to join, but we try to keep the subject

focused on topics directly related to PSC, so please no off topic posts.

Q. What is the purpose of this group?

A. As the name PSC-support suggests, there are two purposes for this

group:

1. To provide information on symptoms, treatments and other issues

related to PSC

2. To provide emotional, spiritual, and informational support to people

with PSC, their friends and their families.

Q. What do the abbreviations and terms I see on this list mean?

A. PSC -- Primary Sclerosing Cholangitis

LFT -- Liver Function Test

PBC -- Primary Biliary Cirosis

URQ -- Upper Right Quadrant

UC -- Ulcerative Colitis

Urso -- Short for Ursodeoxycholic Acid. A medication that many of us

take.

(I'm sure there are others that I can't think of right now.. anyone?)

Anyone else with comments, other questions or if you want to vote yes or

no to even having a FAQ, let us know! I'd be willing to compile the list

(if we decide to have one) if no one else would rather do it.

athan

Dan Bertles wrote:

>

> Dirk,

>

> I don't think we should open ourselves to support all liver disease

> patients. It's not that I don't care, nor is it because I don't think we

> have anything to gain from research, discussion, etc. I left the Liver

> Support group (LiverSupport-L@...) because I got bogged down

> with all the other issues and all the other e-mail. If we accept all liver

> diseases, why does this group exist? LiverSupport-L does that. I was very

> grateful to for starting this group. It's more intimate and more

> specific. I like that!

>

> Penny mentioned in a private e-mail how fast this group is growing. I'm

> beginning to loose track of who some of the new people are. If we keep this

> group to PSC, we will still be able to know each other without getting lost

> at least for a while longer.

>

> The person who requested to join has PBC, but wanted to join to provide

> information to others who have PSC who are not on this list. I think anyone

> should be more than welcome to join especially for that reason, but let's

> not water down the intimacy by doing what is already being done somewhere

> else.

>

> Well, this was far more than $0.02 worth; maybe a buck fifty. Sorry.

>

> Dan

>

> > Re: New Member

> >

> ...I would recommend we open ourselves to support of all liver

> disease

> > patients. One of our biggest tasks is simply getting the word out, and

> > ensuring that more organs are available through donars by the time each

> > of us (if ever) is in need. The more people informed, the more family

> > members and friends can join our circle.

> >

>

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

>

>

[Guest guest]

athan--

I agree with your FAQ idea and the questions you propose.

Good idea!

Laurie

------------------------------------------------------------------------

[Guest guest]

Welcome Bill:

Welcome to the group. I, too, am 43, and in the very early stages,

asymptomatic. Enyoy the skiing, it will help with the psyche, which I think is

the hardest part.

Mitch

Atlanta, GA

------------------------------------------------------------------------

[Guest guest]

Bill,

Welcome to the support group! I hope that we can truly help you.

Love,

------------------------------------------------------------------------

[Guest guest]

Welcome Bill, My case is similar to yours although I was diagnosed 8 years

ago. I'm fairly near the PorterCare Center in Denver and my dr. sent me there

a year & a half ago to be evaluated. They said then that I was probably 2-5

years from being put on a list.

I, too, had never known or been in touch with anyone else with PSC until

Payton's story came out. Soon thereafter I found this group and it's been

wonderful hearing from others in the same " leaky boat " as one of them said

recently!

Again, welcome.

Peggy McG

------------------------------------------------------------------------

[Guest guest]

Welcome, Bill. I'm 44, was diagnosed with

PSC in 1987, though my liver enzymes were

elevated as far back as in 1980 at which time

I had several bouts of pericholangitis. I have

yet to be placed on the transplant list, but

may be there soon as I have an appt. Mar. 22

at a transplant center in Omaha.

My point is--a person can go YEARS with this

and not need a transplant--I'm one example. Had

I known YEARS ago I'd still be fighting this now,

I may not have gone through the YEARS with all the

anxiety I did, knowing I'd still be in the waiting game now.

So----enjoy life now and put it in the back of your mind as

much as you can.

Take Care and enjoy your trip!

Laurie

------------------------------------------------------------------------

[Guest guest]

Roy,

Welcome to the group!!!! My symptoms are: URQ pain (frequently), nausea,

edema, and hair loss. (I don't know for sure that the hair loss is a symptom

of this, but it does seem to be)

Love,

------------------------------------------------------------------------

[Guest guest]

Roy, hi and welcome to the group. I too am a new member, having joined about

a month ago, and I have found it very helpful to be able to sign on every day,

as I have learned alot from the other members and feel much less alone. My

husband, who is also 41, was diagnosed with PSC this past year. Like your

wife, his symptoms were only elevated LFTS. It took about 2 years to get a

final diagnosis, after 3 gastroenterologists, one internist and a 2

hepatologists. His doctor feels, that since his initial elevations in LFTs

went back as early as 1984, and crept up little by little, that he may have

had PSC for as long as 15 years. Thank God he does not have UC, at least not

yet. He is basically symptom free, on Actigall 300mg three times and day and

doing very well for now. I pray his good health continues indefinitely, as we

are sending off one boy to college next year and busy raising another who is

10. I guess, however, there is never a convenient time to get sick! In any

event, welcome and I hope you enjoy the group. It has given me alot of hope

for the future, especially when I hear of all the wonderful things some

members are doing, such as having babies, etc. What better reason to continue

to fight to stay well than a new little girl? My best to you and your wife.

Liz

------------------------------------------------------------------------

[Guest guest]

Welcome Dave...

I'm the mom of Tyler (16 yr old PSC<AIH<Crohns and Rhuemtoid Arthritis...It

sound like you have definitely made lemonade out of lemons...Good for

you...Ty is a Junoir in HS and interested in the medical field...I hope he

finds as much joy in his job as you do...

Luanne Ty's mom

[Guest guest]

Hi Dave...Unfortunately I know way to much about UC...My other son who is 21

has had UC since he was 3 yrs old...Both boys see the same GI doc in

Childrens Hospital in Philly...

So far he has not had any other problems...Tys meds also haelp with his

Crohns...like you withyour UC...

Feel well...

Luanne Ty's mom

[Guest guest]

Thank you to all of you out there for each other. I hope I can help someone

someday that this is new to PSC, but for now I am learning how to deal with

all of this through you. I am having some kind of attack of pain in my URQ.

Saturday it sent me to the hospital and today I waited to see if it would

pass but did call my GI. I am instructed to go to the hospital if it reoccurs

and I will see him tomorrow at 12:30 if not before. I can't even explain this

pain, it imobolizes me I can move or talk or do ANYTHING but wait for it to

pass it is in my side and goes across my upper stomach when the attack is

happening, otherwise it is more a constant pain that I can handle at other

times. Please let me know if anyone else experiences this before I go to the

doctor tomorrow and he tells me... I shouldn't be feeling this way! I do feel

this way!!! No I want him to tell me WHY!!

Thanks Vicki

[Guest guest]

Biddy,

Maybe I was wrong maybe I can help someone else even thought this is all new

to me, I know that just knowing others out there are going through what you

are does help.

I was diagnosed 3 months ago with PSC I had occasional pain and would tell my

husband " I feel like I have a gallbladder " . But jaundice and itching is what

sent me to the GI along with high liver enzyems. Ever since the ERCP I have

had a dull achy pain (URQ) But only last week did I start feeling worse,

more severe pain then usual, and the this past Saturday I had my first

attack, and then again today (Monday). I go to the GI tomorrow I will let you

know what happens. I am not sure yet if he is supportive and the doctor I

plan to stay with or not.

What did you mean your pain was a good sign, tell me a little about your PSC

and how it started and how long you've had it.

I think the darvoct makes me sicker espically if I have'nt eaten.

So glad we met,

Vicki

[Guest guest]

Larry,

At the time I was diagnosed with Gilbert's I was perfectly healthy, so no

further tests were done. I'm not sure of the extent of my Mediterranean

background. Elevated bilirubin was the only clue.

Norm

[Guest guest]

Welcome to the group!

Your story sounds similar to mine in ways. I was first diagnosed as

having gallstones when I got really sick the first time. Then the night

before my ERCP the stone which had been blocking the duct passed, and I

felt much better. They went ahead and did the ERCP anyway because they

suspected PSC based on the other tests they'd run. The ERCP confirmed

the PSC.... that was about 8 years ago.

Again welcome to the group!

athan

sleepy5916@... wrote:

>

> Hi all,

> I think I finally figured out how to post here, time will tell!

> I have been in contact with and one other person ( sorry I forget

your name) but thank you for welcoming me so nicely. I tend to get on line when

I am feeling the worst, trying to find anything and everything out I can. Which

was the same old thing ( a discription of PSC) until God finally led me to all

of you! I was diagnosed 3 months ago after jaundicing and itching and having

urine the color of coke. An ultrasound and catscan showed nothing, the GI I went

to WAS SURE that I had a stone in my bile duct. My blood work had gotten better

even before the ERCP but we went ahead with the procedure. ( I don't know how

much better) Well there was no stone and I was diagnosed with 95% assurity with

PSC. I was put on Actigall and given a base line cancer blood level, which came

back " good " . I got very sick for two weeks after " a ton of bile " as the doc

said, was released. I asked to go off of the Actigall as I was feeling so

nauseas and thought it might be causing it. The d!

oc agreed since my blood work " looked better than it should " . I have had a lot

of bad days since all of this started. My blood work still continues to look

good but I feel like I have a gallbladder (which I don't) most days. I didn't

have this problem til diagnosed although occationaly I would tell my husband

that it felt like I still had my gallbladder, that feeling would pass after a

few minutes. It took 7 years for the doctors to take out my gallbladder (5 years

ago)and after having every test coming back normal during that time and every

doctor acting like I was either a hypocondrite or a mental patient, finally one

of the surgeons did a different test that showed my gallbladder did not function

right - they don't usually do surgery for this but since I had so many problems

he di. MY GALLBLADDER WAS FULL OF TINY STONE! I think all of that was connected

to this PSC and I just pray that they listen to me about what is going on with

my body now. Sorry to rant and rave, it fee!

ls so good to talk with others that know some of the things I am going through.

I will close now, if I haven't put all of you to sleep by now. LOL Thank you for

listening. Thank you for your stories, I will be looking forward to chating with

all of you, Sorry so long I will not be so windy next time,Vicki

>

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

> [it's a Free World]It's a Free World

> eGroups.com home: /group/

> www. - Simplifying group communications

[Guest guest]

Hi!

Welcome to this site and never apologize about being windy -- I must be

the worst but sometimes we have so much to say -- to get out to people who

really understand. Never, never hold back on your messages because you think

you are too " windy. "

You are going to love this site and the people on it. Oh my gosh they

are so understanding and helpful. Don't know how I got this far without

them.

One of the best on this site is Jacquelyn and she is in the hospital now

and this upsets me. She is a great gal! When she gets back " online " , you

will see what I mean!

Again, welcome!

Hugs,

Biddy

new member

>Hi all,

>I think I finally figured out how to post here, time will tell!

>I have been in contact with and one other person ( sorry I forget

your name) but thank you for welcoming me so nicely. I tend to get on line

when I am feeling the worst, trying to find anything and everything out I

can. Which was the same old thing ( a discription of PSC) until God finally

led me to all of you! I was diagnosed 3 months ago after jaundicing and

itching and having urine the color of coke. An ultrasound and catscan showed

nothing, the GI I went to WAS SURE that I had a stone in my bile duct. My

blood work had gotten better even before the ERCP but we went ahead with the

procedure. ( I don't know how much better) Well there was no stone and I was

diagnosed with 95% assurity with PSC. I was put on Actigall and given a base

line cancer blood level, which came back " good " . I got very sick for two

weeks after " a ton of bile " as the doc said, was released. I asked to go off

of the Actigall as I was feeling so nauseas and thought it might be causing

it. The doc agreed since my blood work " looke am going through. I will close

now, if I haven't put all of you to sleep by now. LOL Thank you for

listening. Thank you for your stories, I will be looking forward to chating

with all of you, Sorry so long I will not be so windy next time,Vicki

>

>

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

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

>

>

[Guest guest]

Hi Vicki!

I just cannot believe what you wrote. Here you are a new member and it

must have been " kismet " that sent you to this site. I have been on this site

for about a year now and have learned so much. But, I really haven't found

anyone that has this extreme pain that I have been experiencing for 2-1/2

years!! I used to be a workalcholoic ( I know this is the wrong spelling,

but I just can't remember how to spell it) , but the pain brought me to my

knees and I had to quit! I did work a year with this horrible symptom.

I have been to a pain-management center and of course my docs. My docs

really don't believe me that it is as horrible as it is. I do have, thank

God, my family doc that has seen me in these and she is a BELIEVER!

I have been on Percoset for about 2 years. I don't know if I am addicted

because that was a big concern for me. When I told all of my docs about this

concern they said -- and you worry about this -- why? I don't want to become

a druggie -- that is my biggest fear. However, when this incredible pain

hits, I take my pill -- sometimes up to three-a-day, but usually averages

out to one-a-day! There used to be months, weeks and days that the pain

didn't appear at all -- but when it did -- watch out!

I have only been to the ER four times for the pain, but the orders are

to take blood and give me a shot -- they have been so nice because I really

don't need X-rays and all of that.

I do wish I had good news for you and after all, everyone is different

and your pain may go away soon -- I will definitely pray for that! I feel so

sorry for you. The pain, as you know, is awful but I have built up a great

tolerance to pain -- sometimes I can " suck it up! "

One thing you have GOT to be thankful for is that you have a doctor that

believes you!!

Anymore info you want and I am sure you don't want anymore for me, I

will be glad to talk about. Just talking and finding someone who is

experiencing this is unbelievable -- maybe we can help ourselves. Have long

have you had this? How did it start? How long have you been diagnosed with

PSC? My pain, actually which was a good sign, started as a dull pain in the

URQ. It stayed like that for about 6 months and then it started getting

worse.

Hang is there -- maybe a doctor can cure you and then that would help

me because I want to be cured of this so bad!! Oh, the pain doctor told me

that there was nothing in the world he could do for me, just do what I am

doing with the Percoset.

Hugs,

Biddy

Re: new member

>Thank you to all of you out there for each other. I hope I can help someone

>someday that this is new to PSC, but for now I am learning how to deal with

>all of this through you. I am having some kind of attack of pain in my URQ.

>Saturday it sent me to the hospital and today I waited to see if it would

>pass but did call my GI. I am instructed to go to the hospital if it

reoccurs

>and I will see him tomorrow at 12:30 if not before. I can't even explain

this

>pain, it imobolizes me I can move or talk or do ANYTHING but wait for it to

>pass it is in my side and goes across my upper stomach when the attack is

>happening, otherwise it is more a constant pain that I can handle at other

>times. Please let me know if anyone else experiences this before I go to

the

>doctor tomorrow and he tells me... I shouldn't be feeling this way! I do

feel

>this way!!! No I want him to tell me WHY!!

>Thanks Vicki

>

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

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

>

>

[Guest guest]

Re: new member

>Thank you to all of you out there for each other. I hope I can help someone

>someday that this is new to PSC, but for now I am learning how to deal with

>all of this through you. I am having some kind of attack of pain in my URQ.

>Saturday it sent me to the hospital and today I waited to see if it would

>pass but did call my GI. I am instructed to go to the hospital if it

reoccurs

>and I will see him tomorrow at 12:30 if not before. I can't even explain

this

>pain, it imobolizes me I can move or talk or do ANYTHING but wait for it to

>pass it is in my side and goes across my upper stomach when the attack is

>happening, otherwise it is more a constant pain that I can handle at other

>times. Please let me know if anyone else experiences this before I go to

the

>doctor tomorrow and he tells me... I shouldn't be feeling this way! I do

feel

>this way!!! No I want him to tell me WHY!!

>Thanks Vicki

>

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

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

>

>

[Guest guest]

Vicki,

I am so glad we met also. Some of the people on this site has had pain,

but I haven't heard of any that has had it all of the time. I have posted

several times about the pain, but you are the first, as it seems, that your

pain describes what I have.

I have never been jaundice or had the itching. I do have, now, the

beginning of confusion. I used to say I couldn't tell the difference and so

did my family " LOL " , but now it is getting embarrassing when I am out.

Be sure and tell me what your doc says.

Hugs,

Biddy

Re: new member

>Biddy,

>Maybe I was wrong maybe I can help someone else even thought this is all

new

>to me, I know that just knowing others out there are going through what you

>are does help.

>I was diagnosed 3 months ago with PSC I had occasional pain and would tell

my

>husband " I feel like I have a gallbladder " . But jaundice and itching is

what

>sent me to the GI along with high liver enzyems. Ever since the ERCP I have

>had a dull achy pain (URQ) But only last week did I start feeling worse,

>more severe pain then usual, and the this past Saturday I had my first

>attack, and then again today (Monday). I go to the GI tomorrow I will let

you

>know what happens. I am not sure yet if he is supportive and the doctor I

>plan to stay with or not.

>What did you mean your pain was a good sign, tell me a little about your

PSC

>and how it started and how long you've had it.

>I think the darvoct makes me sicker espically if I have'nt eaten.

>So glad we met,

>Vicki

>

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

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

>

>