Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 Hi, I am not really a 'kid' but I am new to all of this. When I was first diganosed I cried for days, but now i am at a point where I want knowledge. First off, will this disease kill us? I mean is it terminal? Seems like what I read says a transplant is the only option and that transplant patients can live up to 8 years more. The thing is that I am 30 years old, and knowing that I have 10-20 years to live, makes me so sad. But then again, I may have created this time limit on my own, that is why I want to hear from others about what this disease means for/to them. I appreciate any info, really, I am REALLY alone in this, I have loved ones, but NOONE that understands, (including me) at this point. Thank you! God Bless B- Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 B- I am so sorry to hear about your diagnosis, but glad you found us. You have come to a very supportive and extremely knowledgeable group of PSC patients and their loving caregivers. So you have come to the right place for knowledge, but also if you have those days where you want to cry about your diagnosis we are here for that also. You are not alone. I would start first with the very informational brochure that PSC Partners Seeking a Cure Foundation has put together. You can access this brochure at: http://www.pscpartners.org/PSCBrochure.pdf This also is a great source friends and family that don’t understand. They are also having their 4th annual PSC Conference on May 2-4 in ville, FL at the Mayo Clinic. The weekend will be full of excellent topics and speakers and also gives you the opportunity to meet others with PSC. It is a weekend every year I look forward to. You can find out more information at www.pscpartners.org Welcome to the group! Joanne (mom of Todd, 21, PSC 01, Crohns 02, TX Twice 03, rPSC 05, Diabetes 06, living life to the fullest 08) No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.2/1304 - Release Date: 02/29/08 8:18 AM No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.2/1304 - Release Date: 02/29/08 8:18 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 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. PSC affects everyone differently. Some people have had it for a long time with few symptoms. Some, such as my self, have needed to be transplanted. There is no good way to detemine how it will affect you. I was 28 when I was diagnosed in 1989. I was doing realitively well until 1995 at which time they could no longer open my ducts. In December of 1995 I was put on a transplant list. 19 gruling months later I got the call for a new liver. Everything went well with the transplant and I was back to work full time in 2 months. I was one of the unfortunate few that has the PSC recur. In 2004 I received a second tranplant and am doing great. Don't be afraid of PSC, be knowledgable about it. The people in this group are great and will try to answer any question you may have. Doing searches on the internet will get you a lot of mis information, such as living only 8 years after a transplant. Stay positive and ask questions. > > Hi, > First off, will this disease kill us? I mean is it terminal? Seems like what I read says a transplant is the only option and that transplant patients can live up to 8 years more. The thing is that I am 30 years old, and knowing that I have 10-20 years to live, makes me so sad. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 Hi B, sorry to hear about your diagnosis, but glad you joined the group. i can relate to everything you wrote. my husband was diagnossed in december 2006 at the age of 40.after reading stuff on the internet i was terrified (fyi info is out dated.) like you i thought he would die in 8 to ten years. we met with doctor kris kowdely -an expert in psc- and he was very reassuring. he said some people don't ever need a transplant. he recommends the urso(he is involved in study and urso is high in antioxidants) he says to eat protein and not to get fat. get regular blood checked and make sure to check vitamin deficiencies and cholesterol. he said it is very important to get yearly colonoscopy with 45 biopsies done. pscers have high risk of colon cancer that is curable with early detection. we were paniced two months ago when an mri showed more constictions from a year befors. again dr. kowdely said he does not treat mri but rather the person. so since alex was feeling fine-no symptoms and blood was good he said just go about your life! ercp is most accurate but surprisingly he only recommends doing them every three years(again assuming no symptoms). my husband takes vitamins -milk thistle for the liver and omega threes. he also drinks goji juice 1/4 cup in morning and 1/4 cup at night. he also practices bikram hot yoga 5 days a week. thank god he is feeling great and blood work is fine. try not to worry and know we are all here for you good days and bad. all the best-rachel > > Hi, > > I am not really a 'kid' but I am new to all of this. When I was first diganosed I cried for days, but now i am at a point where I want knowledge. > > First off, will this disease kill us? I mean is it terminal? Seems like what I read says a transplant is the only option and that transplant patients can live up to 8 years more. The thing is that I am 30 years old, and knowing that I have 10-20 years to live, makes me so sad. But then again, I may have created this time limit on my own, that is why I want to hear from others about what this disease means for/to them. > > I appreciate any info, really, I am REALLY alone in this, I have loved ones, but NOONE that understands, (including me) at this point. > > Thank you! > God Bless > B- > > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Yahoo! Search. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 , I am fairly new to the PSC club (not one I really wanted to join!) and when you are first diagnosed it can be a scary thing. I think there are a few things you need to consider. 1) This is not a terminal disease, but does have some serious consiquences 2) You may or may not need a liver transplant and who knows when that might be so find a good doctor knowledgable in treating PSC patients. 3) Medical science is making tremendous breakthroughs in all kinds of areas such as stem cell therapy and gene therapy. In my opinion there will be a time in the near future (5-7 years) where they will be able to treat your liver and not require transplants. 4) Knowledge is power so educate yourself with the proper material which I see people have already provided links to. 5) The most important thing is to stay positive and if you feel good then just keep on living life to the fullest. -Dave --- Hanley wrote: > Hi, > > I am not really a 'kid' but I am new to all of > this. When I was first diganosed I cried for days, > but now i am at a point where I want knowledge. > > First off, will this disease kill us? I mean is > it terminal? Seems like what I read says a > transplant is the only option and that transplant > patients can live up to 8 years more. The thing is > that I am 30 years old, and knowing that I have > 10-20 years to live, makes me so sad. But then > again, I may have created this time limit on my own, > that is why I want to hear from others about what > this disease means for/to them. > > I appreciate any info, really, I am REALLY alone > in this, I have loved ones, but NOONE that > understands, (including me) at this point. > > Thank you! > God Bless > B- > > > --------------------------------- > Looking for last minute shopping deals? Find them > fast with Yahoo! Search. ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 Hi B! Your post sounds very similar to my first post. I am 25 and was diagnosed with this diseases 6 months ago and felt the same way. Someone very smart told me that PSC is not terminal, it's chronic. That made me feel better in a way. I have had this disease for a while I'm sure, I started having symptoms 5 years ago so I am scared that I will need a transplant in the next 5 years or so. I hope not but I'm afraid I will. The post transplant survivial rate is another thing that scared me. When I was first dx I read that 80% of liver transplant patients have a 5 year survival rate. So, in my thinking, that meant that I could be dead from this disease by the time I was 40. BUT!!!! Since joining this group I have totally changed my outlook. There are people that I've talked to here and in real life (lol) that have had a liver transplant 18-20 years ago and are still okay. So, I have faith that I will be okay even when I do get my transplant. So, welcome to the group. No one I am around truely understands either. They try. There is a PSC conference in ville Florida May 2-4 that I am goign to try my hardest to go to. You should too if possible. They will have groups for spouses and caregivers of PSC which I am excited about. My husband will get to talk with others in his situation. Well, sorry this turned into a novel, lol. You can email me if you want. I completely empathize with you. Welcome to the group! PSC & PBC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 Hello B, I'm also all to aware of what you are feeling, having just been diagnosed in November. I'm still trying to swallow all this info. I think it's been hardest on my family. I'm also having a hard time explaining the disease process even with passing out the flyers to people, it's just hard to understand. Some of my friends keep telling me to get on the transplant list now and go get transplanted, like it's an option and it's just something you go do. Hang in there, the feeling of doom does get better, thanks to this group, it has helped me tremendously. What part of California are you in? I'm just south of Riverside. UC 2002, PSC 11/07 > > B- > > I am so sorry to hear about your diagnosis, but glad you found us. You have > come to a very supportive and extremely knowledgeable group of PSC patients > and their loving caregivers. So you have come to the right place for > knowledge, but also if you have those days where you want to cry about your > diagnosis we are here for that also. You are not alone. > > > > I would start first with the very informational brochure that PSC Partners > Seeking a Cure Foundation has put together. You can access this brochure > at: HYPERLINK > " http://www.pscpartners.org/PSCBrochure.pdf " http://www.pscpartners.o rg/PSCBr > ochure.pdf This also is a great source friends and family that don't > understand. They are also having their 4th annual PSC Conference on May 2-4 > in ville, FL at the Mayo Clinic. The weekend will be full of > excellent topics and speakers and also gives you the opportunity to meet > others with PSC. It is a weekend every year I look forward to. You can > find out more information at HYPERLINK > " http://www.pscpartners.org/ " www.pscpartners.org > > > > Welcome to the group! > > > > Joanne (mom of Todd, 21, PSC 01, Crohns 02, TX Twice 03, rPSC 05, Diabetes > 06, living life to the fullest 08) > > > > > > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.21.2/1304 - Release Date: 02/29/08 > 8:18 AM > > > > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.21.2/1304 - Release Date: 02/29/08 > 8:18 AM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 , One small note with your e-mail; not all people with PSC have IBD. Some people might start worrying about something they don't need to worry about. Regards, Chaim Boermeester, Israel From: [mailto: ] On Behalf Of rachel Sent: Friday, February 29, 2008 22:36 To: Subject: Re: Questions for the new kid Hi B, sorry to hear about your diagnosis, but glad you joined the group. i can relate to everything you wrote. my husband was diagnossed in december 2006 at the age of 40.after reading stuff on the internet i was terrified (fyi info is out dated.) like you i thought he would die in 8 to ten years. we met with doctor kris kowdely -an expert in psc- and he was very reassuring. he said some people don't ever need a transplant. he recommends the urso(he is involved in study and urso is high in antioxidants) he says to eat protein and not to get fat. get regular blood checked and make sure to check vitamin deficiencies and cholesterol. he said it is very important to get yearly colonoscopy with 45 biopsies done. pscers have high risk of colon cancer that is curable with early detection. we were paniced two months ago when an mri showed more constictions from a year befors. again dr. kowdely said he does not treat mri but rather the person. so since alex was feeling fine-no symptoms and blood was good he said just go about your life! ercp is most accurate but surprisingly he only recommends doing them every three years(again assuming no symptoms). my husband takes vitamins -milk thistle for the liver and omega threes. he also drinks goji juice 1/4 cup in morning and 1/4 cup at night. he also practices bikram hot yoga 5 days a week. thank god he is feeling great and blood work is fine. try not to worry and know we are all here for you good days and bad. all the best-rachel > > Hi, > > I am not really a 'kid' but I am new to all of this. When I was first diganosed I cried for days, but now i am at a point where I want knowledge. > > First off, will this disease kill us? I mean is it terminal? Seems like what I read says a transplant is the only option and that transplant patients can live up to 8 years more. The thing is that I am 30 years old, and knowing that I have 10-20 years to live, makes me so sad. But then again, I may have created this time limit on my own, that is why I want to hear from others about what this disease means for/to them. > > I appreciate any info, really, I am REALLY alone in this, I have loved ones, but NOONE that understands, (including me) at this point. > > Thank you! > God Bless > B- > > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Yahoo! Search. > Quote Link to comment Share on other sites More sharing options...
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