Guest guest Report post Posted April 28, 1999 Hi Penny and everyone! Received your message upon my return, but yes, I did try to pick their brains at Mayo. Quite a place! Didn't find out too much that was earth-shattering, but will sum up a few tidbits from my hour or so with Dr. LaRusso and Hepatology fellow, Dr. Prell(I think that was his name..what a nice " kid " !): They are still very concerned about the Cholangiocarcinoma risk in PSC and Colon Cancer risk in people with both PSC and IBD(UC or Crohn's) Relying a little more on that Ca19-9 screening and frequent (1x/yr) colonoscopy with plenty of biopsies. Cholangiocarcinoma definately seems to be more prevalent in people with PSC who smoke. Dr. LaRusso still thinks Ursodeoxycholic Acid is helpful for PSC. He said that Dr. Lindor's previous study was very short term (2 years) and may have not been enough time to evaluate effect. He saw no reason for a higher dose for me right now as all LFTs are WNL. (I am on 1200 mg Actigall per day, but at 5'10 " , I weigh a bit more than you, Peggy..my dose is 15-20 mg/kg body weight) I may not qualify for Dr. Lindor's new high dose trial as I had a liver bx done at another hospital a year ago and it might not provide a consistant enough baseline for comparison. I did ask the question " Do normal LFTs when one is on Urso indicate anything about the disease status or progression ? " He hedged a little on that question, but left me with the idea that it probably means something..i.e. if the elevations show up because of damage to the cells of the liver and bile ducts, then if these are not excessive, there may be less damage going on. (paraphrased and possibly only partly correct) Also asked about the " autoimmune " vs unknown infection theories. No great revealing answer on that either. Just that it appears to be an abnormal immune response, etc. While there is limited research specifically on PSC, there is a ton of research into abnormal immune response(Crohn's and Colitis, Rheumatoid Arthritis, MS. etc)--they feel that this area of work is most likely to lead to better understanding of PSC. Recurrance of PSC after transplant?--they are about to publish an article on the subject. They think it is about 20% of post-tx PSC people. And unlike the Hep people, even if it does come back, it is often slow in progressing. They confirmed that PSC patients have one of the best tx success rates. Peggy, I was struck with the disproportionate amount of space on the various Mayo bookshelves (Mayo Store, News store etc.) re: Fibromyalgia. Not a thing available on PSC! I thought of you when I saw it. I guess Mayo does alot with that disease as well. If I recall any other PSC info they provided, I will post it later. Take Care! H.- PSC -----Original Message-----From: PR Weller Sent: Friday, April 23, 1999 5:28 PMTo: egroupsSubject: Find out what's new...pick their brains. Penny SHCowmeadow wrote: Hi Everyone-Just wanted to say hello and to wish you all my best. Have been " reading " , but not " talking " much recently. Have been thinking about you all, but sometimes don't know what to say.(Often, things are said better by someone else in the group) Will be going off-line for a few days for my little " vacation " at Mayo Clinic. I feel fine, so it's no big deal--just getting checked out. I admire so many of you for the way you handle everything associated with this disease. Have apleasant few days ! I'll be thiniking about all of you. H.-PSC Shop.theglobe.com * One-Stop Shopping * Free Shipping in U.S.! Live Personal Shopper * Satisfaction Guaranteed * No Hassle Returns! Accessories, Apparel, Jewelry, Kids, Sporting Goods, Apparel, More!! http://clickhere./click/145 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 6, 1999 Hi -Brown, Welcome. I had the dilatation in the bile duct in 1983. This procedure was first done by a Dr. Eugene Schiff at the Univ. of Miami Med School. I was one of the 7 patients in the original study. It is called the -Russel Procedure. I used to have the procedure done every 14 to 16 weeks. Now about once a year. I was diagnosed with PSC in 1979 and in 1981 I was given 18 to 24 months to live. I just turned 75 and am in the best health in the last 15 years. One of the secrets is eating proper foods, low fats and walking, walking and walking. Larry ------------------------------------------------------------------------ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 7, 1999 Hi Larry, I just read your email to and I am very encouraged by your story. My husband is 41 and newly diagnosed with PSC, although the doctor thinks he may have had it as long as 14 years. He is doing really well, has no symptoms as of yet, and is doing just as you advised. He follows a low fat diet, drinks alot of water and has always been physically active. I hope and pray when he is 75 he will be around to inspire as much hope for the future to someone else as your short posting has done for me tonite. God bless you and I wish you many more years of continued good health. Liz ------------------------------------------------------------------------ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 16, 1999 Hi everyone I found an interesting article Bone Marrow Cells could one day be used to heal damaged livers. http://www.post-gazette.com/healthscience Scroll down the bottom of the news article and it will be there. Click on!! Hope everyone is doing well Marsha ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 24, 1999 -- Best of luck Friday on your ERCP/dilation. I'll be praying for you. Laurie ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 24, 1999 Thanks so much, Laurie. Oceandrmer@... wrote: > -- > Best of luck Friday on your ERCP/dilation. I'll be praying for you. > > Laurie > > ------------------------------------------------------------------------ > eGroups now offers FREE email newsletters! > Women.com, RollingStone, Travelocity, and more… > Sign-up Now! http://clickhere./click/315 > > eGroups.com home: /group/ > - Simplifying group communications ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 31, 1999 -- Keep us posted. If you still feel the way you sound today, I'm sure you will call your dr. (Hint) Take Care. Love & Prayers, Laurie ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 19, 1999 Mike-- If normal drugs aren't helping you with your UC, you may not be alone. I started Flagyl two months ago and it works. There are issues with taking flagyl for UC though. Jon ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 22, 1999 Sharon, Welome to the group. Forget about the happy message. Things will get fixed. Sorry to hear about all the problems you've had with the UC. How long have you had the UC? How bad is the PSC? Larry Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 22, 1999 Sharon, This is a great group of people to help you thru the tough times. They are well informed, I have learned a great deal in the last 6 months. If you want to know anything, just ask. Someone will have the answer. Larry Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 22, 1999 Larry, I have had UC since I was 17 (33 years). No problems now because the colon is gone! The PSC isn't bad unless I have to take anti-biotics then I get a sever itch. No one has confirmed if the abdominal pain attacks I get are from the PSC. My GP keeps trying to send me back to the specialist but she don't want to see me for another four months. I was told I was to early into it to see the local transplant team. I have been researching on the internet and ran into you guys so thought I would try and find out what I am in for. Sharon Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 22, 1999 Larry, I have had UC since I was 17 (33 years). No problems now because the colon is gone! The PSC isn't bad unless I have to take antibiotics then I get a sever itch. No one has confirmed if the abdominal pain attacks I get are from the PSC. My GP keeps trying to send me back to the specialist but she don't want to see me for another four months. I was told I was to early into it to see the local transplant team. I have been researching on the internet and ran into you guys so thought I would try and find out what I am in for. Sharon Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 22, 1999 Larry, Do you have the virus that those people posted they gave to us? Biddy Re: Re: >Sharon, > >This is a great group of people to help you thru the tough times. They are >well informed, I have learned a great deal in the last 6 months. If you want >to know anything, just ask. Someone will have the answer. > >Larry > >------------------------------------------------------------------------ >Accurate impartial advice on everything from laptops to tablesaws. >http://clickhere./click/552 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 24, 1999 Biddy, When I saw the happy face tag on the email and I didn't know who it was from so I just deleted it. I didn't get infected. Larry Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 24, 1999 Larry, Thank God it looks as if I haven't been infected either! YEAH!! Hugs, Biddy Re: Re: >Biddy, > >When I saw the happy face tag on the email and I didn't know who it was from >so I just deleted it. I didn't get infected. > >Larry > >------------------------------------------------------------------------ >Want the power to purchase wisely? Productopia has the answers. >http://clickhere./click/553 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 9, 1999 Peggy, I happen to love egg custard!! One of the biggest reasons for finally getting this done is the doctor told me that any infection will be much more serious for than the normal person. I was supposed to have them out almost 6 years ago but was a wimp and put it off. I guess the inevitable always happens. Thanks for your support. Marcy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 30, 1999 If anyone would care to send me a copy via email, I would love it! Trumbull ptrumbull@... ---------- From: KATHY MCCOLUMN[sMTP:thera1st@...] Sent: Friday, August 27, 1999 4:44 PM To: ptmanageregroups Subject: Re: Outpatient Assessment Forms -Reply Content-Type: multipart/mixed; boundary= " ------------4D6EF495528007BB844CB9AF " Content-Transfer-Encoding: 7bit --------------4D6EF495528007BB844CB9AF Content-Type: text/plain; charset= " us-ascii " content-transfer-encoding: 7bit please send me a copy of your outpatient assessment forms . to thera1st.bellsouth .net Helene Rosen wrote: > I'd love a copy! My e-mail is HRosen@.... > THanks. > > >>> 07/12/99 08:42am >>> > Did everyone get a copy of the forms via email? I got a > response from 1 > person, so I know at least some of you got it. Oddly enough > I did not > get my own message through ptmanager, so I was a bit > concerned. My > email address is RJRK@... > > Thanks (I don't want to have to type it over again - it was > long!!) > > > > ------------------------------------------------------------------------ > > eGroups.com home: > /group/ptmanager > - Simplifying group communications > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ptmanager > - Simplifying group communications ------------------------------------------------------------------------ eGroups.com home: /group/ptmanager - Simplifying group communications --------------4D6EF495528007BB844CB9AF Content-Type: text/x-vcard; charset= " us-ascii " ; name= " vcard.vcf " content-disposition: attachment; filename= " vcard.vcf " content-description: Card for kathy mccolumn content-transfer-encoding: 7bit begin: vcard fn: kathy mccolumn n: mccolumn;kathy org: therapy first outpatient rehab email;internet: thera1st@... x-mozilla-cpt: ;0 x-mozilla-html: FALSE version: 2.1 end: vcard --------------4D6EF495528007BB844CB9AF-- Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 6, 1999 Houston Area Get-together All those with PBC and Autoimmune Liver Diseases are welcome to join us in a get together after the ALF Liver Expo September 19, l999. Get-together at J. W. Marriott Hotel, same meeting room as ALF function Date: Sunday, Septemeber 19, l999 Time: 2:30 - 5pm RSVP: Please e-mail Linie at PBCLinie@... if you would like to join us....we need to get an estimate for the table set up. ~~~~~~~~~~~~~~ The American Liver Foundation South Texas Chapter is sponsoring a Liver Expo program for the practitioner and the patient. Where: J. W. Marriott Hotel, 5150 Westheimer, Houston, Texas. Date: Sunday, September 19, 1999 Time: 10:45 a.m. - 2:30 p.m. Registration fee: $25.00 includes lunch at seminar and ALF membership. Tickets must be purchased prior to seminar by calling or e-mail Patti at Liverstx@... (check, Master Card, Visa and American Express accepted). Program and Luncheon Schedule 10:45 - 11:00 am Registration 11:00 - 11:45 am Hepatitis and the Law Mark Rothstein JD, Director Health Law & Policy Institute U of H Legal restrictions on employees' use of information about hepatitis. 11:45 - 12:15 pm Luncheon 12:15 - 1:00 pm Nutrition and the Liver Victor Ankoma-Sey MD, Chief of Hepatology Texas Liver Center Current thoughts about nutrition for the liver disease patient. 1:00 - 1:45 pm Y2K - Will your liver be compliant Perrillo MD, Director Division Gastroenterology & Hepatology Oschner Clinic New Orleans, La. Latest advances in genetic and molecular biology and what is on the horizon for treatment in hepatitis. 1:45 - 2:30 pm Women and liver disease Caroline Riely MD, University of Tn, College of Medicine, GI/Hepatology Division Memphis, Tn Issues pertaining to women, PBC and other autoimmune liver diseases. If you need any additional information, please contact Patti Wittlif at the American Liver Foundation South Texas Chapter located in Houston. _______________________________________ ________________________________________________________________ Get FREE voicemail, fax and email at http://voicemail.excite.com Talk online at http://voicechat.excite.com Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 20, 1999 Michele, and group, I did go to my uncles funeral, though it was very hard. I was about to leave at one point, and my brother and sister walked in. Since my sister was riding with me, I couldn't abandon her. I'm glad that I went, no matter how hard it was, and will continue to be. Thank you all again for your prayers, and very kind words. We truly have become one huge family, and I am very proud of this fact. (But, if we think of it in terms such as this...it would make me everyone's mother. I'm WAY too young to be a mom!!! <GRIN>) Michele, Please send me your old email address (the one you want deleted) and the new one..I will try to do this for you very soon. You can send it to me personally at Wybear21@... Love, Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 20, 1999 Michele, I have access to the group both from home and at work. You can change to just reading messages from the list and not have them sent as e-mail. To get access at home, will tell you how. To change the access away from e-mail, I've got instructions written down at home, I'll send them tonight. That works good if you are on vacation or away from your computer for awhile and you can change it back and forth. Peg Michele Bruno wrote: > , > My prayers are with you. I lost my mom 11/2 years ago and shortly after > a close friend's mother died and I could not go to the funeral. It was > too painful for me. I understand and don't feel guilty if it is too > difficult. > > I'm experiencing extreme fatique and muscle weakness. I tried to run > after the dog the other day and my legs felt like dead weights. I'm > been trying to go to the gym to build up strength to no avail. What is > the correlation between PSC and EXTREME muscle weakness? > > How do I cancel the postings from coming to my work e-mail and switch it > to my home e-mail at mishbruno@.... I want my husband to be able to > e-mail the group in case I get sick and it is too much mail to continue > to get at work. > > Michele, age 31, status 3 (was 2b) but my bilirubin improved (Go figure > I feel worse!!!!!) > diagnosed PSC /UC 1996 Positive ERCP and liver biopsy. Hometown, NJ > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 20, 1999 Michele, Phil suffers a lot from muscle weakness and the extreme fatigue. He is especially fatigued in the morning and late afternoon. A nap usually helps him. And since he isn't working he is able to sleep in. Peg Michele Bruno wrote: > , > My prayers are with you. I lost my mom 11/2 years ago and shortly after > a close friend's mother died and I could not go to the funeral. It was > too painful for me. I understand and don't feel guilty if it is too > difficult. > > I'm experiencing extreme fatique and muscle weakness. I tried to run > after the dog the other day and my legs felt like dead weights. I'm > been trying to go to the gym to build up strength to no avail. What is > the correlation between PSC and EXTREME muscle weakness? > > How do I cancel the postings from coming to my work e-mail and switch it > to my home e-mail at mishbruno@.... I want my husband to be able to > e-mail the group in case I get sick and it is too much mail to continue > to get at work. > > Michele, age 31, status 3 (was 2b) but my bilirubin improved (Go figure > I feel worse!!!!!) > diagnosed PSC /UC 1996 Positive ERCP and liver biopsy. Hometown, NJ > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 20, 1999 -- I'm so sorry about your uncle. I've been offline (again) for a few days & didn't know. My thoughts & prayers continue to be with you and yours. Laurie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 20, 1999 I don't think of you as the mother. You are one of my children. My daughter used to do my checkbook for me ( would you believe that a big part of my job is accounting, she used to get so frustrated with me, duplicates checks are sure a life saver), you are just doing the support group for us. Love, Peg WYBEAR21@... wrote: > Michele, and group, > I did go to my uncles funeral, though it was very hard. I was about to > leave at one point, and my brother and sister walked in. Since my sister was > riding with me, I couldn't abandon her. I'm glad that I went, no matter how > hard it was, and will continue to be. Thank you all again for your prayers, > and very kind words. We truly have become one huge family, and I am very > proud of this fact. (But, if we think of it in terms such as this...it would > make me everyone's mother. I'm WAY too young to be a mom!!! <GRIN>) > Michele, Please send me your old email address (the one you want > deleted) and the new one..I will try to do this for you very soon. You can > send it to me personally at Wybear21@... > Love, > > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 23, 1999 Peggy McG-- I don't blame you for being nervous about cancer, given your family's history - I think anyone would be! That's too much for one family! I am glad you felt well at the wedding. Laurie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 6, 2003 HI TOM, GOOD ONE. I HAD NOT THOUGHT OF THAT ONE FOR A LONG TIME. HAPPINESS AND BUTTERFLIES TO YOU LYNN Quote Share this post Link to post Share on other sites
