Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 , Like you when I was first diagnosed back in 1991 I was in a similar point in my life and also am the type of personality that likes to quantify things. Unfortunately, this disease does not lend itself to any normal, average or expected progression. When I was first diagnosed I was planning a career as a pilot, had just learned a couple months prior my wife was pregnant with our first child and had recently purchased a house. Diagnosis had in a large impact on some decisions and little impact on others. A career as a pilot was out of the questions due to the diagnosis but fortunately I had begun been making that transition and decision for other reasons prior to diagnosis. Certainly the decision on kids had already been made but how many? Financial decision become even more complicated not knowing what the future may hold. I can tell you personally for me that the disease made little impact on my decision to have a second child a couple years later. Financially it has perhaps been a motivator to save a little better than most Americans and perhaps go with a smaller house rather than an extravagant new one. I think most in this group would agree with me that having this disease should be considered in making decisions but not be the driving force. In other words live life to the fullest now but reponsibly plan for the future. What impact this disease will have on your future and on what timeframe, no one can know. Therefore it cannot rule your life. Many have gone 20-30 years with little or no impact while others have only made it a few years after diagnosis before transplant. The best thing you can do for yourself and your family is learn as much as possible, take charge of your health management, and be an informed and decisive patient. This will strenghen the relationship with your doctor and the good ones will respect this knowledge and form a good partnership with you. I wish you well as your navigate these decisions. We are all here to support you. Feel free to e-mail me privately if you want to discuss more. Try to remember through this to not let this disease define who you are. in Seattle UC 1991, PSC 2001 > > As a person, I will admit I am bit of a control freak. Up until this point > I have lived my life by setting a goal in the future some where and working > toward it at some rate (the daily trudge). My life has pretty much been > text book, with the following game plan 1) collage 2) career 3) wife 5) > house 6) kids 7) save for kids collage 8) retirement. Now that I have been > told that I suffer from this disease with only one " cure " the old game plan > needs to be changed up a little bit. The problem is I don't know where the > liver transplant resides in the scheme of things (5, 10, 15 years?). > > > > I am finding out that every case of this disease is not typical and there is > no real way to put a time frame on things. But for curiosity sake how long > did it take from the first notable symptoms, initial diagnosis, or first > major blockage until either 1) you had to start working part time due to the > fatigue or other health issues related to the disease or 2) require a > transplant. > > > > As a new comer, > > Thank You, > > > > Spencer > > UC 91 PSC 05 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 The standard rule of thumb is 10 years from diagnosis to transplant. As you've said however, about the only thing that's common in the course of the disease for us is that nothing is common. Several members were diagnosed 20-30 years ago and still have their original equipment. Personally, I believe there will be a breakthrough in the next 5-10 years - I'm rooting for "grow your own". Autologous (self) stem cell research is advancing at an astonishing rate. They have already managed to coax liver cells from bone marrow stem cells. believes the answer to be in genetic research. Both avenues, and many others are being pursued. My advice (easy for me to say) is go with your original plan. Even without PSC, you could get hit by a bus tomorrow - would you plan for that? The only change I've made is to pay very close attention to my medical insurance. Arne54 - UC 9/77 - PSC 4/00Alive and (mostly) well in Minnesota From: [mailto: ] On Behalf Of scott & julie spencer As a person, I will admit I am bit of a control freak. Up until this point I have lived my life by setting a goal in the future some where and working toward it at some rate (the daily trudge). My life has pretty much been text book, with the following game plan 1) collage 2) career 3) wife 5) house 6) kids 7) save for kids collage 8) retirement. Now that I have been told that I suffer from this disease with only one “cure” the old game plan needs to be changed up a little bit. The problem is I don’t know where the liver transplant resides in the scheme of things (5, 10, 15 years?). I am finding out that every case of this disease is not typical and there is no real way to put a time frame on things. But for curiosity sake how long did it take from the first notable symptoms, initial diagnosis, or first major blockage until either 1) you had to start working part time due to the fatigue or other health issues related to the disease or 2) require a transplant. As a new comer, Thank You, Spencer UC 91 PSC 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 , I was diagnosed in 89 and had my first transplant in 97. My PSC came back and had another transplant in 04. I worked full time up to both transplants. I'm a software engineer so I sit at a desk all day so I didn't have much physical activity to tire myself out. Since I had my transplant I have purchased 3 homes, had two sons, and recieved my masters degree. This disease slowed me down, but I won't let it beat me. Stay positive! PCS 89, TX1 97, TX2 04 --- In , " scott & julie spencer " > I am finding out that every case of this disease is not typical and there is > no real way to put a time frame on things. But for curiosity sake how long > did it take from the first notable symptoms, initial diagnosis, or first > major blockage until either 1) you had to start working part time due to the > fatigue or other health issues related to the disease or 2) require a > transplant. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Dear , I am adding your email to my keepers for the day that my son might need some inspiration. I'm so glad to hear your success story. Lee > , > I was diagnosed in 89 and had my first transplant in 97. My PSC came > back and had another transplant in 04. I worked full time up to both > transplants. I'm a software engineer so I sit at a desk all day so I > didn't have much physical activity to tire myself out. Since I had my > transplant I have purchased 3 homes, had two sons, and recieved my > masters degree. This disease slowed me down, but I won't let it beat > me. Stay positive! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Given your game plan, not unlike my own, you probably won't like the answers. No body knows. It can give you 10-20 years of normal grace, or it can hit you in spurts, it can hammer you early on.......like life itself there are no guarantees, just enjoy today for what it is, a gift. Best jd, 45 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 Southern, IL krmpotich@... Quote Link to comment Share on other sites More sharing options...
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