Guest guest Posted August 20, 2008 Report Share Posted August 20, 2008 First of all, you're NOT alone! Here's some information to start you off: http://www.pscpartners.org/PSCBrochure.pdf http://www.psc-literature.org/FAQ.htm As for what will happen, it is quite variable among us. The average time from diagnosis to transplant is 10 years - but we have members who have had PSC for 30+ years without transplant, and are still doing well. We have members who have progressed rapidly and suffer from the symptoms (fatigue, itching, frequent hospitalizations) - and some who are completely without symptoms. One of the foremost PSC researchers (Dr. Chapman) has stated " you're more likely to die WITH PSC than because of it " (or something like that). Hang in there, and start listing your questions for your next Dr. visit. Welcome! Arne UC 1977, PSC 2000 Alive and well in Minnesota ---- jsportw98407 jsportw98407@...> wrote: ============= I am 25 years old and just recently diagnosed with PSC. My doctor hasn't really told me much about it and all my research online hasn't came up with much. Can anyone please fill me in on what happens?.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2008 Report Share Posted August 20, 2008 I'm sure you'll get many responses, but I'll try and cover some key points: It is overwelming to get this diagnosis and it can really get you down if you read all the information that is available online. Let me just say this; Your life will change in that PSC isn't like cancer where you can hope to get Chemo and try and eliminate the cancer. PSC will stay with you until (and if) the day comes that you will require a transplant. There is no cure other than a transplant. When I was first diagnosed in 2000 (31 years old), I was freaked out because my doctor told my wife and I that she could only guarantee 1-2 years of good liver function before I would most likely need a transplant. After a rough start, I have been perfectly healthy for the past five years and I don't anticipate a liver transplant any time soon. I'm one of the lucky ones. Understand that every one of us afflicted may have similar symptoms from time to time, but each individual is different. What may work for someone may not work for you and vice versa. Each one of leads different lifestyles and each one of us may treat our bodies differently. I wouldn't get too caught up in all the minute details of this support group. This group is full of great information, but trying to read every post will get you down. You will have to be strong and realize that there are no timelines involved really. PSC just doesn't work that way. The way you view the disease will change versus what you are probably feeling now. I realize that even though I have this disease, I'm still pretty lucky. Some people just have heart attacks and drop dead with no warning. I've been given a huge wake up call to live life to the fullest. I'm sure this may sound like common sense, but you should probably stop drinking and smoking if you haven't already. I miss having my occasional social drinks, but why chance anything. It's just not that important. Steve H. PSC (2000) UC (1994) New to PSC I am 25 years old and just recently diagnosed with PSC. My doctor hasn't really told me much about it and all my research online hasn't came up with much. Can anyone please fill me in on what happens? Timelines, what to expect, How my life will have to change? Any responses would be greatly appreciated...thanks!! ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2008 Report Share Posted August 20, 2008 Welcome to the group. We are all different and so PSC progresses differently in each of us. Most of the information on the web is dated, but we were given a link to a recent article on PSC; http://www.pulsus.com/journals/abstract.jsp?sCurrPg=abstract & jnlKy=2 & atlKy=8237 & isuKy=802 & spage=0 & isArt=t & fromfold=Current Under " PROGNOSIS " it states " median transplant-free survival of 18 years " . That figure is much closer to my personal experience (I was diagnosed 19 years ago) than other documents I've seen that stated live expectancy of only 11-12 years. Ian (52) PSC 89 I am 25 years old and just recently diagnosed with PSC. My doctor hasn't really told me much about it and all my research online hasn't came up with much. Can anyone please fill me in on what happens? Timelines, what to expect, How my life will have to change? Any responses would be greatly appreciated...thanks!! -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2008 Report Share Posted August 20, 2008 Welcome to the group. We are all different and so PSC progresses differently in each of us. Most of the information on the web is dated, but we were given a link to a recent article on PSC; http://www.pulsus.com/journals/abstract.jsp?sCurrPg=abstract & jnlKy=2 & atlKy=8237 & isuKy=802 & spage=0 & isArt=t & fromfold=Current Under " PROGNOSIS " it states " median transplant-free survival of 18 years " . That figure is much closer to my personal experience (I was diagnosed 19 years ago) than other documents I've seen that stated live expectancy of only 11-12 years. Ian (52) PSC 89 I am 25 years old and just recently diagnosed with PSC. My doctor hasn't really told me much about it and all my research online hasn't came up with much. Can anyone please fill me in on what happens? Timelines, what to expect, How my life will have to change? Any responses would be greatly appreciated...thanks!! -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2008 Report Share Posted August 20, 2008 Welcome to the group. We are all different and so PSC progresses differently in each of us. Most of the information on the web is dated, but we were given a link to a recent article on PSC; http://www.pulsus.com/journals/abstract.jsp?sCurrPg=abstract & jnlKy=2 & atlKy=8237 & isuKy=802 & spage=0 & isArt=t & fromfold=Current Under " PROGNOSIS " it states " median transplant-free survival of 18 years " . That figure is much closer to my personal experience (I was diagnosed 19 years ago) than other documents I've seen that stated live expectancy of only 11-12 years. Ian (52) PSC 89 I am 25 years old and just recently diagnosed with PSC. My doctor hasn't really told me much about it and all my research online hasn't came up with much. Can anyone please fill me in on what happens? Timelines, what to expect, How my life will have to change? Any responses would be greatly appreciated...thanks!! -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2008 Report Share Posted August 21, 2008 Hi, SO sorry you are facing this, I wish none of us had to... I was diagnosed a few months ago and the first few months were really difficult. I was in the middle of a busy period at work and I just couldn't concentrate or get anything done. It's a lot to process. If your approach to information is " knowledge is power " (as opposed to " ignorance is bliss " ), then this group is for you! Sometimes it's difficult to read about people's struggles and be reminded that what they are going through could be in your future. But it's also great, for me, to know that there are others who are going through exactly what I go through and can understand. It's really hard for other people who don't have PSC to understand how it feels. For me, it's been also really helpful to talk to people other than my family and friends. So I would really recommend seeking out a counselor to help you process what you are feeling and provide a safe space to express thoughts about otherwise tabboo subjects, like death and sickness. The good news, though, is that many people with PSC live on! And have rockin' fulfilling lives, with careers, kids, marriages, athletic accomplishments - you name it! PSC is really a chance for the soul to wake up and start guiding you in life. The uncertainty sucks, but living life to its fullest every day doesn't! Please keep us posted about what is going on with you and ask us ANYTHING that is on your mind. My doctor also didn't tell me very much when I first was diagnosed, and that was very frustrating for me. So please use this group of knowledgable compassionate people as a resource. Ruth UC - 2000, Colectomy - 2007, PSC - 2008 > > I am 25 years old and just recently diagnosed with PSC. My doctor > hasn't really told me much about it and all my research online hasn't > came up with much. Can anyone please fill me in on what happens? > Timelines, what to expect, How my life will have to change? Any > responses would be greatly appreciated...thanks!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2008 Report Share Posted August 21, 2008 Ruth,That was a wonderful e-mail!!! Very well written and very close to how I feel, and probably how a lot of us feel.Marie To: From: rblatt@...Date: Thu, 21 Aug 2008 14:37:49 +0000Subject: Re: New to PSC Hi, SO sorry you are facing this, I wish none of us had to... I was diagnosed a few months ago and the first few months were really difficult. I was in the middle of a busy period at work and I just couldn't concentrate or get anything done. It's a lot to process. If your approach to information is "knowledge is power" (as opposed to "ignorance is bliss"), then this group is for you! Sometimes it's difficult to read about people's struggles and be reminded that what they are going through could be in your future. But it's also great, for me, to know that there are others who are going through exactly what I go through and can understand. It's really hard for other people who don't have PSC to understand how it feels. For me, it's been also really helpful to talk to people other than my family and friends. So I would really recommend seeking out a counselor to help you process what you are feeling and provide a safe space to express thoughts about otherwise tabboo subjects, like death and sickness. The good news, though, is that many people with PSC live on! And have rockin' fulfilling lives, with careers, kids, marriages, athletic accomplishments - you name it! PSC is really a chance for the soul to wake up and start guiding you in life. The uncertainty sucks, but living life to its fullest every day doesn't! Please keep us posted about what is going on with you and ask us ANYTHING that is on your mind. My doctor also didn't tell me very much when I first was diagnosed, and that was very frustrating for me. So please use this group of knowledgable compassionate people as a resource. Ruth UC - 2000, Colectomy - 2007, PSC - 2008 > > I am 25 years old and just recently diagnosed with PSC. My doctor > hasn't really told me much about it and all my research online hasn't > came up with much. Can anyone please fill me in on what happens? > Timelines, what to expect, How my life will have to change? Any > responses would be greatly appreciated...thanks!! > Be the filmmaker you always wanted to be—learn how to burn a DVD with Windows®. Make your smash hit Quote Link to comment Share on other sites More sharing options...
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