Re: Poll: How did you hear about the group?

August 20, 2003

I found the group during one of my searches for information on PSC. I think I got here through a link on about.com, but I can't remember (early senility, you know...I have teenagers!). Anyway, I'm really happy to have found the group and the wealth of information in the postings!

Blessings and healing,

Pam

Poll: How did you hear about the group?

I thought it would be intersting to see what different ways people haveheard about this group. Personally, I joined the group when first created it. I learned that she was creating it via theLiversupport group that I was a member of and I think I happened on thatwhile searching for info on PSC.What's your story?

August 20, 2003

I found the liver support group. I was mis-dx with auto-immune hepatitis, so I joined a group where everyone had AIH. Both Andi and Luanne belonged to it at that time also. Andi left the group when she was dx with psc, but kept in touch.

When I was correctly dx four months later, Andi told me about the psc support group. I couldn't keep up with both, so I joined only this one. It has been wonderful being a part of this group. I believe Luanne still posts with both groups. I don't know how she does it.

Cheryl Berg, Idaho 44 Married 25 years, 4 children, 2 grchildrenPSC 01, UC 00, Fibromyalgia, hypothyroid,hiatal hernia, ulcer, disability (retired English teacher)

Poll: How did you hear about the group?

I thought it would be intersting to see what different ways people haveheard about this group. Personally, I joined the group when first created it. I learned that she was creating it via theLiversupport group that I was a member of and I think I happened on thatwhile searching for info on PSC.What's your story?

August 21, 2003

I thankfully found this group when I did a search on PSC. The thought of a support group hadn't even crossed my mind at that point. All of you have been a big blessing and source of information. Plus my doctor always seems so impressed with how much information I have about the disease and the different drugs. That is all thanks to you and your willingness to share.

Blessings,

Barby

UC - age 11, ileostomy - age 17 (1972), continent ostomy - 1994

PSC - 1995

married 23 years, 5 sons ages 11-22

KS - tornado (1983) and house fire (2002) survivor

August 20-hail the size of ping pong balls-smashed the rear window of my son's car

August 21, 2003

I thought it would be intersting to see what different ways people have

heard about this group. Personally, I joined the group when

first created it. I learned that she was creating it via the

Liversupport group that I was a member of and I think I happened on that

while searching for info on PSC.

What's your story?

I heard about the group from Ivor Sweigler who is secretary of the UK PSC support Group. Very grateful I am too.

Barbara (uk)

August 21, 2003

I had posted on the TRNSPLNT list and

someone invited me to join the PBC support group at Yahoo, which made me look

to see what other kinds of groups were there, and I found this one.

Steve Rahn

L Tx 9/6 & 9/8 '85. (Wash. U-STL)

(re) Born on the

4th of July, 2003 (U of Iowa)

www.presumedconsent.org

" Do

not go gentle into that good night

Rage,

rage against the dying of the light "

(Dylan

)

August 21, 2003

i'm grateful for the opportunity to respond to this poll -- as it means i can take a break from fighting the armageddon of all ant invasions (before that can of RAID brings on the mother of all asthma attacks! sheesh!). the southern california humidity, intermittent respite due to rain, and return to humidity has seemingly millions of those pesky critters marching into our house, in megasuperhighway droves:

jim was the one who first found this support group, immediately after his PSC dx (and before i joined), but he was a lurker/info gatherer and never posted. he eventually became overwhelmed by the volume of postings and unsubscribed (however, he even managed to find a passive way to do that, too -- changing ISPs after switching over to a DSL line meant he didn't have to officially unsubscribe!). it was also at this point of the PSC timeline (also affectionately known as the roller coaster ride) that he stopped attending his monthly UC support group meetings (held off-site to his hepatologist/internist's hospital) and switched over to monthly liver support group meetings (held at the hospital).

you'd *think* he would have been the one to inform me of this group's existence, but... nooooooooo. that would have been too easy! and that also would have meant that we were actually "communicating" about his PSC. again, no. jim was neck-deep in some serious denial back then, insisting (despite my asking his hepatologist, in jim's presence "doctor, didn't you say this was a progressive disease with, to date, no known cure?") that he'd be able to find some way to reverse his PSC, even cure it, and certainly avoid any need for a transplant. did i also mention that he blamed me for his UC and PSC? yep -- he said it was all solely due to my cooking... the foods i chose to prepare, and the way i chose to prepare them. never mind that it was working 18-hour days that catalytically triggered the onset of his UC (IMHO, but his doctor concurs. jim's work hours and lack of vacations were one of the very first things his hepatologist discussed with jim, back at his first appointment).

i mention UC in the same breath as PSC because it is now the held opinion of several doctors, after fully examining 12 years' worth of jim's LFTs, that his PSC dates all the way back to his 1984 UC dx. i should probably add that jim laughs at himself now, with all that he *believed* back then. then again, hindsight is always 20-20, isn't it? and it's a convenient part of the denial process to place the blame on anyone/anything but yourself/your own body's wacky immune system/stress in your life factoring into your health and well-being.

so, with few options before me (beyond that of 1. accompanying jim to his doctor visits to ask questions at those times, and, 2. taking my chances as a cyberidiot and surfing the net for the Very First Time), i eventually ended up in an internet PBC support group, posting my/our need for help/more information. someone there who knew about this group was kind enough to take pity on me and eventually re-direct me here.

and the rest, as they say, is history.

maureen (wife of jim: UC '84; "small-duct" unstentable PSC '96; LRLTx 12/7/01, thanks to our living donor [right lobe hepatectomy] son, jason, now 25)

August 21, 2003

After diagnosis (4/2000), spent the next six months poking around on the

internet, and joined 10/2000.

THANK YOU and the rest of the pioneers from 1998 (in chronological

order):

Pam, Q's mom

JQ

Casey

Stan

athan

Tony

Norm H (bless him)

Bill

Dirk

Serge

Arne

52 - UC 9/77 - PSC 4/00

Alive and (mostly) well in Minnesota

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

From: athan

I thought it would be intersting to see what different ways people have

heard about this group. Personally, I joined the group when

first created it. I learned that she was creating it via the

Liversupport group that I was a member of and I think I happened on that

while searching for info on PSC.

What's your story?

August 21, 2003

I found the group doing PSC searches, kinda by accident. Darn glad I did find

it, cause I found out that I wasn't even aware that some of my problems were

PSC related. I also didn't even know what questions to ask the DR. Just the

fact of knowing you are not the lone ranger was support enough but this group

surpasses that with flying colors. Then there is the support and prayers

during tx or when anything else is not going right. Tim L

--

Tim Long UC / PSC 25+ yrs TX 8/2/02

married 36 yrs, 2 daughters & 2 grandkids

> In a message dated 21/08/03 03:19:57 GMT Daylight Time,

> thegeorges@... writes:

>

> > I thought it would be intersting to see what different ways people have

> > heard about this group. > >

> > What's your story?

> >

>

> I heard about the group from Ivor Sweigler who is secretary of the UK PSC

> support Group. Very grateful I am too.

> Barbara (uk)

August 22, 2003

I, too, came with in the beginning, from the autoimmune

group. I think I found that list a year or two earlier, from a link

on Dr. Bingo's site.

And, for those who are new -- I've started another offshoot, for

parents of kids with PSC. It's also through Yahoo groups, PSCMOMS.

Pam (mom to Quantell, 13, dx 1996, tx 2001, still fighting

complications)

August 22, 2003

Ron & I too found the Liver-L Support group through Dr. Bingo's site &

corresponded with him. That was in '95 or '96 I believe, right after Ron

had been diagnosed with PSC following his heart by-pass surgery. We then

joined this group after its founding. The amount of information & support

that was given to us in the beginning at Liver-L & later in this group was

absolutely the best thing that could have happened for while much of it was

very scary, it helped to prepare us for what was to come. When I first read

Dr. Bingo's site..........I was in shock.........but still could not really

believe that it would ever come to that with Ron. I guess we protect

ourselves that way........anyway, again, a big high five to the group, we