Guest guest Posted September 17, 1999 Report Share Posted September 17, 1999 Hi All I am not currently listed, but am 49 and have other autoimmune diseases: AIH, Lupus and Sjogren's Syndrome. Take Care, Dianne A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 1999 Report Share Posted September 17, 1999 Peg, here is my husband's info for your poll. I submitted it before, but I don't see him there, so here he is again Jim, age 42, Staten Island NY, =1. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 Hi Peg, My name is Biddy SANTON. Don't worry about that everyone gets it wrong. I live in Princeton, WV. Thanks. PEG'S POLL UPDATE >Here's the update as of 3:00 p.m. Pacific Time 9/17. I have gone to all >the different polls in the group. Please add info where there are ?, I >have guessed some of the status please correct me if I errored. Thanks. >Peg > >1=Asymptomatic 2=Symptomatic 3=Listed 4=Transplanted >(this is not a transplant status #) > >ADULT > >Phil Alfeld,M,56 =2 Santa Clarita,CA wife-Peg >Diane Arneill,F,49 =2 Castle Rock, CO >Russ Askren,M,42 =3 San Diego, CA >Dan Bertles,M,38 =2 ? , CA >Tom Black,M,46 =4 Kettering, OH >Larry Bowers,M,50 =1 Baltimore, MD >Teri Bullock,F,32 =2 ? , NC >Bill Dolan,M,59 =3? Drexel Hill(Philadelphia), PA >Tina German,F,28 =2 ?, ? >Rick Butchart,M,44 =2 Port Ludlow, WA >athan ,M,29 =2 Clinton, TN >Serge Gilbert,M, =? Edmonton, Alberta, Canada >Mitch Head,M,43 =? Atlanta, GA >Rene' ,F,50 =2 Farmington, NM >Jim ?,M,56 =3 Portland, OR >Jim ?,M,? =? Louisville,KY >Debbie Lynch,F,34 =2 Ontario, Canada >Laurie ?,F,44 =2 ? , ? >Peggy McGovern,F,? =2 ? , ? >Erwin P,M,33 =2 ? , ? >Ed Reynolds,M,48 =3 ? , ? wife-Gracie >Tim Romlein,M,51 =4 4/4/98 Ann Arbor,MI >Dirk Rosen,M,40 =2 Oakland, CA >Tony Spehar,M,30 =? Melbourne,Australia >Jacquelyn S,F,28 =4 4/99 Carrollton (Dallas),TX >Biddy Stanton,F,57 =2 >Carol Staple,F,? =2 ? , ? >,F,21 =2 Piqua(Dayton),OH > Toutant,F,41 =3 Louisville, KY husband-Roy >Vickie ?,F,38 =2 Toledo,OH >Mike Vizas,M,55 =3 Wakesville (Baltimore),MD wife-Lynn > Walderich,F,54 =3 Manchester,NH >Penny Weller,F,55 =2 Rochester,NY listed 4/97,unlisted 2/98 > >CHILD > >Quantell,M,9 =2 Chicago, IL mom-Pam > Rhoades,M,9.5 =2 Eagle,CO mom-Jodi > ?,M,12 =2 ? , ME mom-Marci > ?,M,7 =2 ? , ? mom- >Tyler ?,M,17 =2 ,NJ mom-Luanne > > > > > > > > > > > >------------------------------------------------------------------------ >BETTER THAN EVER: 250 HOURS FREE on AOL! Find out why 18 MM >people have chosen AOL as their ISP! Click here NOW! for >250 Free HOURS http://clickhere./click/914 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 Sorry Liz, I got the whole thing set up yesterday and then I went to lunch and decided to check messages before I sent it and somehow lost it and had to do it over again. I'll add it. I can't seem to find a simple way of updating it. (Probably because I keep accidentally deleting it. How am I going to work until I 70 to keep us insured when I'm getting so senial already? Peg Rnurse987@... wrote: > Peg, here is my husband's info for your poll. I submitted it before, but I > don't see him there, so here he is again Jim, age 42, Staten Island NY, =1. > Liz > > ------------------------------------------------------------------------ > 250 FREE HOURS on America Online! America's most popular online > service! Try AOL *risk free* for 250 HOURS! > CLICK HERE http://clickhere./click/912 > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 Peg, Sorry it's taken so long. Ed Reynolds,M,49 =3 Coventry,RI wife-Gracie palfel-@... wrote: original article:/group//?start=4526 > Here's the update as of 3:00 p.m. Pacific Time 9/17. I have gone to all > the different polls in the group. Please add info where there are ?, I > have guessed some of the status please correct me if I errored. Thanks. > Peg > > 1=Asymptomatic 2=Symptomatic 3=Listed 4=Transplanted > (this is not a transplant status #) > > ADULT > > Phil Alfeld,M,56 =2 Santa Clarita,CA wife-Peg > Diane Arneill,F,49 =2 Castle Rock, CO > Russ Askren,M,42 =3 San Diego, CA > Dan Bertles,M,38 =2 ? , CA > Tom Black,M,46 =4 Kettering, OH > Larry Bowers,M,50 =1 Baltimore, MD > Teri Bullock,F,32 =2 ? , NC > Bill Dolan,M,59 =3? Drexel Hill(Philadelphia), PA > Tina German,F,28 =2 ?, ? > Rick Butchart,M,44 =2 Port Ludlow, WA > athan ,M,29 =2 Clinton, TN > Serge Gilbert,M, =? Edmonton, Alberta, Canada > Mitch Head,M,43 =? Atlanta, GA > Rene' ,F,50 =2 Farmington, NM > Jim ?,M,56 =3 Portland, OR > Jim ?,M,? =? Louisville,KY > Debbie Lynch,F,34 =2 Ontario, Canada > Laurie ?,F,44 =2 ? , ? > Peggy McGovern,F,? =2 ? , ? > Erwin P,M,33 =2 ? , ? > Ed Reynolds,M,49 =3 Coventry,RI wife-Gracie > Tim Romlein,M,51 =4 4/4/98 Ann Arbor,MI > Dirk Rosen,M,40 =2 Oakland, CA > Tony Spehar,M,30 =? Melbourne,Australia > Jacquelyn S,F,28 =4 4/99 Carrollton (Dallas),TX > Biddy Stanton,F,57 =2 > Carol Staple,F,? =2 ? , ? > ,F,21 =2 Piqua(Dayton),OH > Toutant,F,41 =3 Louisville, KY husband-Roy > Vickie ?,F,38 =2 Toledo,OH > Mike Vizas,M,55 =3 Wakesville (Baltimore),MD wife-Lynn > Walderich,F,54 =3 Manchester,NH > Penny Weller,F,55 =2 Rochester,NY listed 4/97,unlisted 2/98 > > CHILD > > Quantell,M,9 =2 Chicago, IL mom-Pam > Rhoades,M,9.5 =2 Eagle,CO mom-Jodi > ?,M,12 =2 ? , ME mom-Marci > ?,M,7 =2 ? , ? mom- > Tyler ?,M,17 =2 ,NJ mom-Luanne > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 Peg, not senile, just on overload sometimes. I find myself unable to handle all the things I have on my plate lately, (firstborn off to college, parents moved in to apartment downstairs, etc.). Sometimes I'm lucky if I can remember my own name. I'm only 42, so I hope senility can wait until my 70's, if I live that long. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 Caseyspa, Welcome back, it's been awhile since you have posted. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 Thanks for putting the time and effort into organizing this info. I'm M35, Medford, NJ and just had my first recurrence since my diagnosis in 11/98. Caseyspa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 Liz, I hope it's just overload, I forget so much and it's true I try to do too many things at once. I start out to do something then get side tracked and then do something else and then forget what I started out to do. But sometimes it's just plain-the mind goes blank. I'm having trouble remembering names of friends. The other day I was driving along and pictured someone from my Sunday school class - couldn't remember her name. Then it came to me so I sat there grilling myself with who was married to who and so on. It gets real scary sometimes. I'm also forgeting too much at work. I've got to remember to write things down but then I forget to look at the list or can't find it. I give up :-) I still remember my computer programs so I guess I'm okay. There I go rambling. Sorry. Peg Rnurse987@... wrote: > Peg, not senile, just on overload sometimes. I find myself unable to handle > all the things I have on my plate lately, (firstborn off to college, parents > moved in to apartment downstairs, etc.). Sometimes I'm lucky if I can > remember my own name. I'm only 42, so I hope senility can wait until my > 70's, if I live that long. Liz > > ------------------------------------------------------------------------ > 250 FREE HOURS on America Online! America's most popular online > service! Try AOL *risk free* for 250 HOURS! > CLICK HERE http://clickhere./click/912 > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 Is caseyspa your first name? Peg caseyspa@... wrote: > Thanks for putting the time and effort into organizing this info. I'm > M35, Medford, NJ and just had my first recurrence since my diagnosis in > 11/98. > > Caseyspa > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 Here's the update as of 6:00 p.m. Pacific Time Sun 9/19. Please add info where there are ?, I have guessed some of the status please correct me if I errored. We could use some last names or initials after the Jim's. Thanks. Peg 1=Asymptomatic 2=Symptomatic 3=Listed 4=Transplanted (this is not a transplant status #) ADULT Phil Alfeld,M,56 =2 Santa Clarita,CA wife-Peg Diane Arneill,F,49 =2 Castle Rock, CO Russ Askren,M,42 =3 San Diego, CA Dan Bertles,M,38 =2 ? , CA Tom Black,M,46 =4 Kettering, OH Larry Bowers,M,50 =1 Baltimore, MD Teri Bullock,F,32 =2 ? , NC Bill Dolan,M,59 =3? Drexel Hill(Philadelphia), PA Rick Butchart,M,44 =2 Port Ludlow, WA Caseyspa,M,35 =2 Medford NJ Tina German,F,28 =2 ?, ? athan ,M,29 =2 Clinton, TN Serge Gilbert,M, =? Edmonton, Alberta, Canada Mitch Head,M,43 =? Atlanta, GA Diane Howell,F,55 =2 Vancouver, BC, Canada Rene' ,F,50 =2 Farmington, NM Jim ?,M,56 =3 Portland, OR Jim ?,M,? =? Louisville,KY Jim ?,M,42 =1 Staten Island,NY wife-Liz Debbie Lynch,F,34 =2 Ontario, Canada Laurie ?,F,44 =2 ? , ? Peggy McGovern,F,42 =2 Billings, MT Erwin P,M,33 =2 ? , ? Ed Reynolds,M,49 =3 Coventry, RI wife-Gracie Tim Romlein,M,51 =4 4/4/98 Ann Arbor,MI Dirk Rosen,M,40 =2 Oakland, CA Tony Spehar,M,30 =? Melbourne,Australia Jacquelyn S,F,28 =4 4/99 Carrollton (Dallas),TX Biddy Santon,F,57 =2 Princeton, WV Carol Staple,F,? =2 ? , ? ,F,21 =2 Piqua(Dayton),OH Toutant,F,41 =3 Louisville, KY husband-Roy Vickie ?,F,38 =2 Toledo,OH Mike Vizas,M,55 =3 Wakesville (Baltimore),MD wife-Lynn Walderich,F,54 =3 Manchester,NH Penny Weller,F,55 =2 Rochester,NY listed 4/97,unlisted 2/98 CHILD/TEEN Quantell,M,9 =2 Chicago, IL mom-Pam Rhoades,M,9.5 =2 Eagle,CO mom-Jodi ?,M,12 =2 ? , ME mom-Marci ?,M,7 =2 ? , ? mom- Tyler ?,M,17 =2 ,NJ mom-Luanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 Peg, You can remove the question mark after the 3 in my listing. You were correct in choosing " listed. " Bill Dolan palfel-@... wrote: original article:/group//?start=4573 > Here's the update as of 6:00 p.m. Pacific Time Sun 9/19. Please add > info where there are ?, I have guessed some of the status please > correct me if I errored. We could use some last names or initials after > the Jim's. Thanks. > Peg > > 1=Asymptomatic 2=Symptomatic 3=Listed 4=Transplanted > (this is not a transplant status #) > > ADULT > > Phil Alfeld,M,56 =2 Santa Clarita,CA wife-Peg > Diane Arneill,F,49 =2 Castle Rock, CO > Russ Askren,M,42 =3 San Diego, CA > Dan Bertles,M,38 =2 ? , CA > Tom Black,M,46 =4 Kettering, OH > Larry Bowers,M,50 =1 Baltimore, MD > Teri Bullock,F,32 =2 ? , NC > Bill Dolan,M,59 =3? Drexel Hill(Philadelphia), PA > Rick Butchart,M,44 =2 Port Ludlow, WA > Caseyspa,M,35 =2 Medford NJ > Tina German,F,28 =2 ?, ? > athan ,M,29 =2 Clinton, TN > Serge Gilbert,M, =? Edmonton, Alberta, Canada > Mitch Head,M,43 =? Atlanta, GA > Diane Howell,F,55 =2 Vancouver, BC, Canada > Rene' ,F,50 =2 Farmington, NM > Jim ?,M,56 =3 Portland, OR > Jim ?,M,? =? Louisville,KY > Jim ?,M,42 =1 Staten Island,NY wife-Liz > Debbie Lynch,F,34 =2 Ontario, Canada > Laurie ?,F,44 =2 ? , ? > Peggy McGovern,F,42 =2 Billings, MT > Erwin P,M,33 =2 ? , ? > Ed Reynolds,M,49 =3 Coventry, RI wife-Gracie > Tim Romlein,M,51 =4 4/4/98 Ann Arbor,MI > Dirk Rosen,M,40 =2 Oakland, CA > Tony Spehar,M,30 =? Melbourne,Australia > Jacquelyn S,F,28 =4 4/99 Carrollton (Dallas),TX > Biddy Santon,F,57 =2 Princeton, WV > Carol Staple,F,? =2 ? , ? > ,F,21 =2 Piqua(Dayton),OH > Toutant,F,41 =3 Louisville, KY husband-Roy > Vickie ?,F,38 =2 Toledo,OH > Mike Vizas,M,55 =3 Wakesville (Baltimore),MD wife-Lynn > Walderich,F,54 =3 Manchester,NH > Penny Weller,F,55 =2 Rochester,NY listed 4/97,unlisted 2/98 > > CHILD/TEEN > > Quantell,M,9 =2 Chicago, IL mom-Pam > Rhoades,M,9.5 =2 Eagle,CO mom-Jodi > ?,M,12 =2 ? , ME mom-Marci > ?,M,7 =2 ? , ? mom- > Tyler ?,M,17 =2 ,NJ mom-Luanne > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 Hi Liz! I also live in Staten Island (New York). Although I do not have PSC, my daughter (now 6) received a liver transplant more than 5 years ago (not PSC, but biliary atresia). We have friends here in SI whose 8 year old son has PSC. I subscribed to the PSC list because I run the Children's Liver Alliance and we have several kids with PSC (so I want to learn as much as I can). With friendship, -- L. Carroccio Chairwoman & Founder CHILDREN'S LIVER ALLIANCE E-Mail: Livers4Kids@... Web: http://livertx.org Telephone/Fax: 3835 Richmond Avenue, Suite 190 Staten Island, NY 10312-3828 USA Publishers of The Biliary Tree newsletter Rnurse987@... wrote: > Peg, here is my husband's info for your poll. I submitted it before, but I > don't see him there, so here he is again Jim, age 42, Staten Island NY, =1. > Liz > > ------------------------------------------------------------------------ > 250 FREE HOURS on America Online! America's most popular online > service! Try AOL *risk free* for 250 HOURS! > CLICK HERE http://clickhere./click/912 > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 marsha adams 1 nov. 98 garden grove california 47 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 Peg, its Jim C. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 Hi , thanks for the post. It is interesting to meet people via this list, especially in my own backyard! I hope your daughter is doing well, and I'm sorry to hear of your friend's son having PSC. Apparently, it is not that uncommon in kids as we have a few on this list alone. It is especially cruel to hear about kids getting these diseases that cause so much misery. I am interested to hear about your organization. I am a pediatric nurse at a foster care agency here on the island, and would like to hear about your work. You can e-mail me directly at rnurse987@.... I look forward to hearing from you! Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 Sorry, Biddy, People keep calling us Alfred instead of Alfeld. I say " Why do they put an r in and take the l out " . I guess fred is easier to say than feld. Anyway I guess you got me back. Hugs back, Peg Biddy Santon wrote: > Hi Peg, > My name is Biddy SANTON. Don't worry about that everyone gets it wrong. > I live in Princeton, WV. > Thanks. > > PEG'S POLL UPDATE > > >Here's the update as of 3:00 p.m. Pacific Time 9/17. I have gone to all > >the different polls in the group. Please add info where there are ?, I > >have guessed some of the status please correct me if I errored. Thanks. > >Peg > > > >1=Asymptomatic 2=Symptomatic 3=Listed 4=Transplanted > >(this is not a transplant status #) > > > >ADULT > > > >Phil Alfeld,M,56 =2 Santa Clarita,CA wife-Peg > >Diane Arneill,F,49 =2 Castle Rock, CO > >Russ Askren,M,42 =3 San Diego, CA > >Dan Bertles,M,38 =2 ? , CA > >Tom Black,M,46 =4 Kettering, OH > >Larry Bowers,M,50 =1 Baltimore, MD > >Teri Bullock,F,32 =2 ? , NC > >Bill Dolan,M,59 =3? Drexel Hill(Philadelphia), PA > >Tina German,F,28 =2 ?, ? > >Rick Butchart,M,44 =2 Port Ludlow, WA > >athan ,M,29 =2 Clinton, TN > >Serge Gilbert,M, =? Edmonton, Alberta, Canada > >Mitch Head,M,43 =? Atlanta, GA > >Rene' ,F,50 =2 Farmington, NM > >Jim ?,M,56 =3 Portland, OR > >Jim ?,M,? =? Louisville,KY > >Debbie Lynch,F,34 =2 Ontario, Canada > >Laurie ?,F,44 =2 ? , ? > >Peggy McGovern,F,? =2 ? , ? > >Erwin P,M,33 =2 ? , ? > >Ed Reynolds,M,48 =3 ? , ? wife-Gracie > >Tim Romlein,M,51 =4 4/4/98 Ann Arbor,MI > >Dirk Rosen,M,40 =2 Oakland, CA > >Tony Spehar,M,30 =? Melbourne,Australia > >Jacquelyn S,F,28 =4 4/99 Carrollton (Dallas),TX > >Biddy Stanton,F,57 =2 > >Carol Staple,F,? =2 ? , ? > >,F,21 =2 Piqua(Dayton),OH > > Toutant,F,41 =3 Louisville, KY husband-Roy > >Vickie ?,F,38 =2 Toledo,OH > >Mike Vizas,M,55 =3 Wakesville (Baltimore),MD wife-Lynn > > Walderich,F,54 =3 Manchester,NH > >Penny Weller,F,55 =2 Rochester,NY listed 4/97,unlisted 2/98 > > > >CHILD > > > >Quantell,M,9 =2 Chicago, IL mom-Pam > > Rhoades,M,9.5 =2 Eagle,CO mom-Jodi > > ?,M,12 =2 ? , ME mom-Marci > > ?,M,7 =2 ? , ? mom- > >Tyler ?,M,17 =2 ,NJ mom-Luanne > > > > > > > > > > > > > > > > > > > > > > > >------------------------------------------------------------------------ > >BETTER THAN EVER: 250 HOURS FREE on AOL! Find out why 18 MM > >people have chosen AOL as their ISP! Click here NOW! for > >250 Free HOURS http://clickhere./click/914 > > > > > >eGroups.com home: /group/ > > - Simplifying group communications > > > > > > > > > > > > ------------------------------------------------------------------------ > 250 FREE HOURS on AOL! So easy to use, no wonder its #1 > Click here NOW! for 250 Free HOURS > http://clickhere./click/913 > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 Here's the update as of 11:45 p.m. Pacific Time Mon 9/20. Please add info where there are ?, I have guessed some of the status please correct me if I errored. We could use some last names or initials after the Jim's. Thanks. (Peggy McG I went and put you at 42 instead of 52 guess that's because you said you felt younger I guess.) Peg 1=Asymptomatic 2=Symptomatic 3=Listed 4=Transplanted (this is not a transplant status #) ADULT Phil Alfeld,M,56 =2 Santa Clarita,CA wife-Peg Diane Arneill,F,49 =2 Castle Rock, CO Russ Askren,M,42 =3 San Diego, CA Dan Bertles,M,38 =2 ? , CA Tom Black,M,46 =4 Kettering, OH Larry Bowers,M,50 =1 Baltimore, MD Teri Bullock,F,32 =2 ? , NC Bill Dolan,M,59 =3 Drexel Hill(Philadelphia), PA Rick Butchart,M,44 =2 Port Ludlow, WA Caseyspa,M,35 =2 Medford NJ Vickie Fowler,F,38 =2 Toledo,OH Tina German,F,28 =2 ?, ? athan ,M,29 =2 Clinton, TN Serge Gilbert,M, =? Edmonton, Alberta, Canada Mitch Head,M,43 =? Atlanta, GA Diane Howell,F,55 =2 Vancouver, BC, Canada Rene' ,F,50 =2 Farmington, NM Jim ?,M,56 =3 Portland, OR Jim ?,M,? =? Louisville,KY Jim ?,M,42 =1 Staten Island,NY wife-Liz Debbie Lynch,F,34 =2 Ontario, Canada Laurie ?,F,44 =2 ? , ? Bill McCarthy,M,43 =2 ?,? Peggy McGovern,F,52 =2 Billings, MT Erwin P,M,33 =2 ? , ? Ed Reynolds,M,49 =3 Coventry, RI wife-Gracie Tim Romlein,M,51 =4 4/4/98 Ann Arbor,MI Dirk Rosen,M,40 =2 Oakland, CA Tony Spehar,M,30 =? Melbourne,Australia Jacquelyn S,F,28 =4 4/99 Carrollton (Dallas),TX Biddy Santon,F,57 =2 Princeton, WV Carol Staple,F,? =2 ? , ? Toutant,F,41 =3 Louisville, KY husband-Roy Mike Vizas,M,55 =3 Wakesville (Baltimore),MD wife-Lynn Walderich,F,54 =3 Manchester,NH Penny Weller,F,55 =2 Rochester,NY listed 4/97,unlisted 2/98 Marilyn ,F,54 =3 Wysong,F,21 =2 Piqua(Dayton),OH CHILD/TEEN Quantell,M,9 =2 Chicago, IL mom-Pam Rhoades,M,9.5 =2 Eagle,CO mom-Jodi Crowley,M,12 =2 Buckfield, ME mom-Marci ?,M,7 =2 Madison, WI mom- (38) Tyler ?,M,17 =2 ,NJ mom-Luanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 LOL! Is there some sort of conspiracy going on that I don't know about? One minute I was meeting someone for lunch in the fall, and the next...I'm walking down the isle. LOL! just kidding of course! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 phil & peggy alfeld wrote: original article:/group//?start=4571 > Is caseyspa your first name? > Peg > Sorry, I'm just so used to signing w/ that name. My oldest son's name is Casey and I am his father, ergo Caseyspa. My name is Ben. Caseyspa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 Hi ! Go for it! This guy just maybe your knight in shining armor -- never know and what to you have to lose. You two have a lot in common and I think the conversation over an incredible meal would be the finishing touches! Oh buy the way, if you cannot get me in the next several months, and if this turns out to be great, 3-mail at PMCCC@... or e-mail me at my address and he will read them every night! Hugs, Biddy Re: PEG'S POLL UPDATE >Caseyspa, > Welcome back, it's been awhile since you have posted. >Love, > > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 Hi Liz: Figured I'd post this to the list as others may be interested in the Children's Liver Alliance and my own history... My daughter, Marielle, was born with biliary atresia, diagnosed at 11 weeks, had a corrective surgery which didn't work, then received liver transplant at 9 months old. Had 5 years of great health until this past March when she had a severe rejection which she was hospitalized for more than a month and a half. She is finally returning to good health, but now has to take a tons of meds. I will post our story under a separate e-mail. I started a newsletter, The Biliary Tree, the day after Marielle received her liver transplant. We had only 7 parents and a handful of medical professionals on our mailing list. Our original focus was Biliary Atresia (a disease where there is an obstruction or absence of the bile ducts which causes cirrohsis). However, within the next year it became evident that we needed to form a non-profit organization. Originally named the Biliary Atresia & Liver Transplant Network, within a year we changed our name to the Children's Liver Alliance and opened our doors to all pediatric liver diseases including PSC. Our newsletter has a readership now of over 23,000! In 1996, our Executive Editor won the Reader's Digest Award for Excellence in Journalism. More than a year ago, we opened an office in Australia. Next month we open an office in Canada and then shortly thereafter one in Mexico. We are quite busy to say the least! We are an all volunteer organization dedicated to empowering the hearts and minds of children with liver disease, their families and the medical professionals who care for them. We have lots of different services and programs, all of which are free. I will post our CLA brochure along with the many others as time permits. Thanks for welcoming me to the list! With friendship, -- L. Carroccio Chairwoman & Founder CHILDREN'S LIVER ALLIANCE E-Mail: Livers4Kids@... Web: http://livertx.org Telephone/Fax: 3835 Richmond Avenue, Suite 190 Staten Island, NY 10312-3828 USA Publishers of The Biliary Tree newsletter Rnurse987@... wrote: > Hi , thanks for the post. It is interesting to meet people via this > list, especially in my own backyard! I hope your daughter is doing well, and > I'm sorry to hear of your friend's son having PSC. Apparently, it is not > that uncommon in kids as we have a few on this list alone. It is especially > cruel to hear about kids getting these diseases that cause so much misery. I > am interested to hear about your organization. I am a pediatric nurse at a > foster care agency here on the island, and would like to hear about your > work. You can e-mail me directly at rnurse987@.... I look forward to > hearing from you! Liz > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 Hi Liz: Figured I'd post this to the list as others may be interested in the Children's Liver Alliance and my own history... My daughter, Marielle, was born with biliary atresia, diagnosed at 11 weeks, had a corrective surgery which didn't work, then received liver transplant at 9 months old. Had 5 years of great health until this past March when she had a severe rejection which she was hospitalized for more than a month and a half. She is finally returning to good health, but now has to take a tons of meds. I will post our story under a separate e-mail. I started a newsletter, The Biliary Tree, the day after Marielle received her liver transplant. We had only 7 parents and a handful of medical professionals on our mailing list. Our original focus was Biliary Atresia (a disease where there is an obstruction or absence of the bile ducts which causes cirrhosis). However, within the next year it became evident that we needed to form a non-profit organization. Originally named the Biliary Atresia & Liver Transplant Network, within a year we changed our name to the Children's Liver Alliance and opened our doors to all pediatric liver diseases including PSC. Our newsletter has a readership now of over 23,000! In 1996, our Executive Editor won the Reader's Digest Award for Excellence in Journalism. More than a year ago, we opened an office in Australia. Next month we open an office in Canada and then shortly thereafter one in Mexico. We are quite busy to say the least! We are an all volunteer organization dedicated to empowering the hearts and minds of children with liver disease, their families and the medical professionals who care for them. We have lots of different services and programs, all of which are free. I will post our CLA brochure along with the many others as time permits. Thanks for welcoming me to the list! With friendship, -- L. Carroccio Chairwoman & Founder CHILDREN'S LIVER ALLIANCE E-Mail: Livers4Kids@... Web: http://livertx.org Telephone/Fax: 3835 Richmond Avenue, Suite 190 Staten Island, NY 10312-3828 USA Publishers of The Biliary Tree newsletter Rnurse987@... wrote: > Hi , thanks for the post. It is interesting to meet people via this > list, especially in my own backyard! I hope your daughter is doing well, and > I'm sorry to hear of your friend's son having PSC. Apparently, it is not > that uncommon in kids as we have a few on this list alone. It is especially > cruel to hear about kids getting these diseases that cause so much misery. I > am interested to hear about your organization. I am a pediatric nurse at a > foster care agency here on the island, and would like to hear about your > work. You can e-mail me directly at rnurse987@.... I look forward to > hearing from you! Liz > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 Hi Caseyspa, I am glad to see you posting again. I wanted to thank you for the assistance you gave me when I was appealing my husband insurance company to pay for the MRCP that was done at Faculty Practice in February. The information you gave me helped me write a really good letter, and along with cooperation from Dr. Tobias and my husband's primary, they finally agreed to pay in full ( as opposed to their original $40) in July. I hope all is going well with you. Are you still working there? Hope to hear from you soon. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 1999 Report Share Posted September 22, 1999 Liz, I'm really glad to hear I was of some help to you. I joined a practice in south Jersey about a half hour east of Philadelphia. We also cover Southern Ocean County Hospital out by LBI. We're really enjoying where we're at, but I recently had a slight setback w/ a recurrence of cholangitis and associated whopping pancreatitis. Hopefully it was just a stone or maybe some sludge that caused temporary blockage. I was in the hospital for 5 days, NPO on IV Abx and fluids. And although I got the royal treatment, it still sucked being on the other side. I'm heading back to NYU to see one of Tobias'colleagues, Jon Cohen, for a repeat ERCP w/ a possible balloon dilatation depending on how my MRCP goes. Wish me luck. Hope all's well with your husband. By the way, please feel free to contact me direct at my email address, caseyspa@.... It's been the rare occasion lately that I've had time to actually check all these posts (i.e., had a lot of free time at the hospital recently). Best Wishes to you and your family, Caseyspa Quote Link to comment Share on other sites More sharing options...
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