Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 HI, my name is and I am 17 yrs old with CF, if you would like to e-mail me, my e-mail adress is stacky_shorty@.... You can also add me to aol messenger (evil flute angel) or yahoo messenger (stacky_shorty). I also have a website: www.angelfire.com/in2/stacycf/home.html > hello all > My name is tanya and I am 21 yrs old. I was born with many things > wrong with me and i live a pretty normal life. I do have to do > things like your kids do every day to stay healthy. I would love to > talk to a child or young adult on the internet who just needs a > buddy. Please feel free to e-mail me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 HI, my name is and I am 17 yrs old with CF, if you would like to e-mail me, my e-mail adress is stacky_shorty@.... You can also add me to aol messenger (evil flute angel) or yahoo messenger (stacky_shorty). I also have a website: www.angelfire.com/in2/stacycf/home.html > hello all > My name is tanya and I am 21 yrs old. I was born with many things > wrong with me and i live a pretty normal life. I do have to do > things like your kids do every day to stay healthy. I would love to > talk to a child or young adult on the internet who just needs a > buddy. Please feel free to e-mail me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 , I share your outrage at lack of funds for CP. I, however, am in the unique position of also having Hepatitis C and know the stigma that is attached to both illnesses. Believe me, just as many people DO, unfortunately, think of hepatitis c as a drug users disease as think of CP and an alcoholics disease. It's a very bad thing for both diseases. Sounds like you made some progress with your senator. Jill Hi Haven't checked the message board the past few days as I was feeling good & being bad. I've actually enjoyed going out to eat & doing activities such as sailing & horsebackriding. I was shocked when I logged on today with the amount of messages I missed. First off, , I am saddened to hear about your sister. Loosing a loved one through any circumstances is tough. I will keep you & your family in my daily prayers. Second, welcome to the new members. I hope you'll stay with the group as we are all on the same cruise ship just different levels. Last but most importantly, I wish Everyone a PainFREE Day. If that's not possible, I offer comfort through prayers. By the way, I wasn't just enjoying my painless days.........I started an ulcer with my state legislature. Not to mention my Senator in DC. I figured since I have delt with them before with similar health issues, I might as well get the ball rolling before I get that denial from Social Security. My Senator was in town doing a fund raiser for hepatitis C awareness & treatment. What a better opportunity than that to raise concerns about the lack of funding for CP? We got into a heated argument about the causes of CP as opposed to Hep C. My position was since HepC is blood borne, why isn't everyone classified an IV Drug user where our healthcare professionals classify CP patients as Drunks? Needless to say, I've got my senator's attention & his promise in writing that he will push for better healthcare issues & research into treatments for CP. Hope to see ya'll on the chat line tonight. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 , I share your outrage at lack of funds for CP. I, however, am in the unique position of also having Hepatitis C and know the stigma that is attached to both illnesses. Believe me, just as many people DO, unfortunately, think of hepatitis c as a drug users disease as think of CP and an alcoholics disease. It's a very bad thing for both diseases. Sounds like you made some progress with your senator. Jill Hi Haven't checked the message board the past few days as I was feeling good & being bad. I've actually enjoyed going out to eat & doing activities such as sailing & horsebackriding. I was shocked when I logged on today with the amount of messages I missed. First off, , I am saddened to hear about your sister. Loosing a loved one through any circumstances is tough. I will keep you & your family in my daily prayers. Second, welcome to the new members. I hope you'll stay with the group as we are all on the same cruise ship just different levels. Last but most importantly, I wish Everyone a PainFREE Day. If that's not possible, I offer comfort through prayers. By the way, I wasn't just enjoying my painless days.........I started an ulcer with my state legislature. Not to mention my Senator in DC. I figured since I have delt with them before with similar health issues, I might as well get the ball rolling before I get that denial from Social Security. My Senator was in town doing a fund raiser for hepatitis C awareness & treatment. What a better opportunity than that to raise concerns about the lack of funding for CP? We got into a heated argument about the causes of CP as opposed to Hep C. My position was since HepC is blood borne, why isn't everyone classified an IV Drug user where our healthcare professionals classify CP patients as Drunks? Needless to say, I've got my senator's attention & his promise in writing that he will push for better healthcare issues & research into treatments for CP. Hope to see ya'll on the chat line tonight. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 , I share your outrage at lack of funds for CP. I, however, am in the unique position of also having Hepatitis C and know the stigma that is attached to both illnesses. Believe me, just as many people DO, unfortunately, think of hepatitis c as a drug users disease as think of CP and an alcoholics disease. It's a very bad thing for both diseases. Sounds like you made some progress with your senator. Jill Hi Haven't checked the message board the past few days as I was feeling good & being bad. I've actually enjoyed going out to eat & doing activities such as sailing & horsebackriding. I was shocked when I logged on today with the amount of messages I missed. First off, , I am saddened to hear about your sister. Loosing a loved one through any circumstances is tough. I will keep you & your family in my daily prayers. Second, welcome to the new members. I hope you'll stay with the group as we are all on the same cruise ship just different levels. Last but most importantly, I wish Everyone a PainFREE Day. If that's not possible, I offer comfort through prayers. By the way, I wasn't just enjoying my painless days.........I started an ulcer with my state legislature. Not to mention my Senator in DC. I figured since I have delt with them before with similar health issues, I might as well get the ball rolling before I get that denial from Social Security. My Senator was in town doing a fund raiser for hepatitis C awareness & treatment. What a better opportunity than that to raise concerns about the lack of funding for CP? We got into a heated argument about the causes of CP as opposed to Hep C. My position was since HepC is blood borne, why isn't everyone classified an IV Drug user where our healthcare professionals classify CP patients as Drunks? Needless to say, I've got my senator's attention & his promise in writing that he will push for better healthcare issues & research into treatments for CP. Hope to see ya'll on the chat line tonight. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 I was just told today that I have PSC....think I need some support...I am overwhelmed and afraid....just had ERCP TEST today and have my MRI on Friday. Then get the big picture next week.....I have been reading everything I can find on the internet tonight and don't think I like what I am reading.....maybe someone out there can help me to understand this better than I do...My doctor did not make me feel very comfortable with this either...he is a very good doctor but not much bedside manner....ty CJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Start with the brochure at http://www.pscpartners.org/PSCBrochure.pdf. There are also some FAQs at http://www.psc-literature.org/FAQ.htm which will give you a good start on questions. As we say, glad you found us (but sorry you found us). Ask away - someone here will have your answers. Welcome! Arne 56 - UC 1977, PSC 2000 Alive (and well) in Minnesota ---- cjlackie wrote: ============= ......maybe someone out there can help me to understand this better than I do... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 CJ, Welcome to the support group. I am sorry you need us, but I am glad you found us. This group is a bunch of very caring and knowledgeable people, both PSC patients and caregivers for PSC patients. Please be careful when you read about PSC on the internet. Much of the research is somewhat outdated because they were done before high dose UDCA came around. Don't get me wrong, high dose UDCA is not some miracle drug, but at the very least it improves the quality of life. Also, it appears that lately a lot of people are diagnosed without having symptoms, more than in the past. There are people here that were diagnosed more than 20 years ago. One of the main PSC gurus, Dr. Chapman in the U.K. has stated not so long ago that in his opinion most of the PSC patients alive now will die with PSC, not from PSC. For now, don't panic and try to live your live in an as normal as possible way. Try to educate yourself using this forum, the http://www.psc-literature.org/ website, our brochure http://www.pscpartners.org/PSCBrochure.pdf and the mayo website http://www.mayoclinic.org/primary-sclerosing-cholangitis/ which I found to be very clear and user friendly. Sorry, I have to go back to work. Regards, Chaim Boermeester, Israel From: [mailto: ] On Behalf Of cjlackie Sent: Thursday, February 28, 2008 05:36 To: Subject: Hi I was just told today that I have PSC....think I need some support...I am overwhelmed and afraid....just had ERCP TEST today and have my MRI on Friday. Then get the big picture next week.....I have been reading everything I can find on the internet tonight and don't think I like what I am reading.....maybe someone out there can help me to understand this better than I do...My doctor did not make me feel very comfortable with this either...he is a very good doctor but not much bedside manner....ty CJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Thank you for you reply. I will read the info you told me to eard. I am sure this qroup will be a big help to me in understing better. CJ In , wrote: & #65007; & #65007; > & #65007; & #65007; > Start with the brochure at & #65007; & #65007; > http://www.pscpartners.org/PSCBrochure.pdf. & #65007; & #65007; > & #65007; & #65007; > There are also some FAQs at & #65007; & #65007; > http://www.psc-literature.org/FAQ.htm & #65007; & #65007; > & #65007; & #65007; > which will give you a good start on questions. & #65007; & #65007; > & #65007; & #65007; > As we say, glad you found us (but sorry you found us). Ask away - someone here will have your answers. & #65007; & #65007; > & #65007; & #65007; > Welcome! & #65007; & #65007; > & #65007; & #65007; > Arne & #65007; & #65007; > 56 - UC 1977, PSC 2000 & #65007; & #65007; > Alive (and well) in Minnesota & #65007; & #65007; > & #65007; & #65007; > & #65007; & #65007; > ---- cjlackie wrote: & #65007; & #65007; > & #65007; & #65007; > ============= & #65007; & #65007; > .....maybe someone out there can help me to understand this better than I do... & #65007; & #65007; > & #65007; & #65007; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Thank you Chaim for you reply to me....I appreciate you saying that about the internet...I thought it would be up to date..What is this UDCA, I have not gone in for the big picture from my Dr. yet and not sure what they will be doing with me but maybe this is something I should discuss with him....I am trying not to panic but is awfully hard with reading the things in the next...your reply was very comforting and I thank you again...... CJ > > CJ, > > > > Welcome to the support group. I am sorry you need us, but I am glad you > found us. This group is a bunch of very caring and knowledgeable people, > both PSC patients and caregivers for PSC patients. > > > > Please be careful when you read about PSC on the internet. Much of the > research is somewhat outdated because they were done before high dose UDCA > came around. Don't get me wrong, high dose UDCA is not some miracle drug, > but at the very least it improves the quality of life. Also, it appears that > lately a lot of people are diagnosed without having symptoms, more than in > the past. There are people here that were diagnosed more than 20 years ago. > One of the main PSC gurus, Dr. Chapman in the U.K. has stated not so long > ago that in his opinion most of the PSC patients alive now will die with > PSC, not from PSC. > > > > For now, don't panic and try to live your live in an as normal as possible > way. Try to educate yourself using this forum, the > http://www.psc-literature.org/ website, our brochure > http://www.pscpartners.org/PSCBrochure.pdf and the mayo website > http://www.mayoclinic.org/primary-sclerosing-cholangitis/ which I found to > be very clear and user friendly. > > > > Sorry, I have to go back to work. > > > > Regards, > > > > Chaim Boermeester, Israel > > > > _____ > > From: [mailto:psc- support ] On > Behalf Of cjlackie > Sent: Thursday, February 28, 2008 05:36 > To: > Subject: Hi > > > > I was just told today that I have PSC....think I need some support...I > am overwhelmed and afraid....just had ERCP TEST today and have my MRI > on Friday. Then get the big picture next week.....I have been reading > everything I can find on the internet tonight and don't think I like > what I am reading.....maybe someone out there can help me to understand > this better than I do...My doctor did not make me feel very comfortable > with this either...he is a very good doctor but not much bedside > manner....ty > CJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Hi CJ and welcome to the group. i have found this group to be very impressive.the wealth of medical knowledge and compassion will surely help you. my husband was diagnosed in dec '07. it was extremely scary at first. like you we went to the internet and read more scary things. chaim is correct it is outdated information. we were fortunate to meet with doctor kris kowdely-a psc expert- he is involved with the urso reasearch. i will share with you some of the highlights of our visit with him. 1. if your blood work is good, you are feeling good than go about your life. he stressed the fact that he does not treat the MRI he treats the patient based on how they are feeling. eat a high protein diet and keep fit. take the urso.the ercp is most accurate for knowing what ducts look like. 2.this is a serious disease but not necessarily one that you will need a liver transplant. the disease waxes and wanes he says. you could have a couple years where you are feeling fine a year of being in and out of the hospital and then more years of feeling fine. 3.he says yearly colonoscopies are a must with 35-40 biopsies taken 4.check blood for vitamin deficiencies and high cholesterol and levels every 6 months 5.call the doctor if you are feeling anything new or unusual in between visits. i wish you all the best and know that this group is here for you. -rachel . > > > > CJ, > > > > > > > > Welcome to the support group. I am sorry you need us, but I am glad > you > > found us. This group is a bunch of very caring and knowledgeable > people, > > both PSC patients and caregivers for PSC patients. > > > > > > > > Please be careful when you read about PSC on the internet. Much of > the > > research is somewhat outdated because they were done before high > dose UDCA > > came around. Don't get me wrong, high dose UDCA is not some miracle > drug, > > but at the very least it improves the quality of life. Also, it > appears that > > lately a lot of people are diagnosed without having symptoms, more > than in > > the past. There are people here that were diagnosed more than 20 > years ago. > > One of the main PSC gurus, Dr. Chapman in the U.K. has stated not > so long > > ago that in his opinion most of the PSC patients alive now will die > with > > PSC, not from PSC. > > > > > > > > For now, don't panic and try to live your live in an as normal as > possible > > way. Try to educate yourself using this forum, the > > http://www.psc-literature.org/ website, our brochure > > http://www.pscpartners.org/PSCBrochure.pdf and the mayo website > > http://www.mayoclinic.org/primary-sclerosing-cholangitis/ which I > found to > > be very clear and user friendly. > > > > > > > > Sorry, I have to go back to work. > > > > > > > > Regards, > > > > > > > > Chaim Boermeester, Israel > > > > > > > > _____ > > > > From: [mailto:psc- > support ] On > > Behalf Of cjlackie > > Sent: Thursday, February 28, 2008 05:36 > > To: > > Subject: Hi > > > > > > > > I was just told today that I have PSC....think I need some > support...I > > am overwhelmed and afraid....just had ERCP TEST today and have my > MRI > > on Friday. Then get the big picture next week.....I have been > reading > > everything I can find on the internet tonight and don't think I > like > > what I am reading.....maybe someone out there can help me to > understand > > this better than I do...My doctor did not make me feel very > comfortable > > with this either...he is a very good doctor but not much bedside > > manner....ty > > CJ > > > Quote Link to comment Share on other sites More sharing options...
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