Guest guest Posted August 23, 2007 Report Share Posted August 23, 2007 Enter your vote today! A new poll has been created for the group: would you consider yourself?? o a family member or caregiver of a pscer o someone with the psc diagnosis but no signs, not on disability, still living a normal life o someone who has had a liver transplant o someone in the midst of psc who is disabled because of it and very sick hoping for a liver transplant within the next couple of years o someone who is still working, but taking urso, feeling fatigued and slowing down To vote, please visit the following web page: http://groups.yahoo.com/group//surveys?id=2562630 Note: Please do not reply to this message. Poll votes are not collected via email. To vote, you must go to the Yahoo! Groups web site listed above. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2007 Report Share Posted August 23, 2007 <Sigh> Once again, there's a new poll and I don't fit any of the categories. I'm not the caregiver, so that rules out the first choice. I do have the PSC diagnosis but have plenty of symptoms, I'm on disability (got that for Crohn's Disease plus fibromyalgia), and definitely not living a " normal " life (whatever that may be!) So there goes choice #2. I have definitely not had a transplant, so that rules out choice #3 the 4th choice comes fairly close until the last few words. Yes, I'm in the midst of PSC, am disabled by the Crohn's and the PSC (not to mention fibromyalgia, spinal stenosis, asthma, etc.). I definitely know that I'm seriously ill even though quality of life has greatly improved thanks to the Xifaxan, so that certainly fits me. But then we hit the last few words and it knocks me right back out again -- " hoping for a liver transplant within the next couple of years. " Folks -- not everyone is eligible (medically speaking) for transplant surgery. I certainly am not!!! I cannot have general anesthesia and I've got a sneakin' suspicion that transplant surgery without anesthesia would be a bit of a bummer, dontcha know??!! So, no, I don't fit this category either. Please try to remember that even though the overwhelming majority here are going the transplant route, there are a few who can't. And, personally, I'm just fine with that! I'm totally at peace with my situation which I think probably gives me somewhat of an advantage simply from not having to deal with the mind-boggling stress of that emotional roller coaster! As for the last choice .... again we have an assumption -- this time being that everyone is taking urso. There are a few of us who can't tolerate the drug. From my perspective, I don't see that I'm any worse off for it. Certainly I'm not getting sicker any faster than the majority of the group. And Heaven knows I don't miss the expense of the drug! Regards, Carolyn B. in SC ============================= > > > Enter your vote today! A new poll has been created for the > group: > > would you consider yourself?? > > o a family member or caregiver of a pscer > o someone with the psc diagnosis but no signs, not on disability, still living a normal life > o someone who has had a liver transplant > o someone in the midst of psc who is disabled because of it and very sick hoping for a liver transplant within the next couple of years > o someone who is still working, but taking urso, feeling fatigued and slowing down Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2007 Report Share Posted August 24, 2007 can we add an other catagory for Carolyn and who knows how many others? Ian <Sigh> Once again, there's a new poll and I don't fit any of thecategories.I'm not the caregiver, so that rules out the first choice.I do have the PSC diagnosis but have plenty of symptoms, I'm on disability (got that for Crohn's Disease plus fibromyalgia), anddefinitely not living a " normal " life (whatever that may be!) So theregoes choice #2.I have definitely not had a transplant, so that rules out choice #3 the 4th choice comes fairly close until the last few words. Yes, I'min the midst of PSC, am disabled by the Crohn's and the PSC (not tomention fibromyalgia, spinal stenosis, asthma, etc.). I definitely know that I'm seriously ill even though quality of life has greatlyimproved thanks to the Xifaxan, so that certainly fits me. But thenwe hit the last few words and it knocks me right back out again -- " hoping for a liver transplant within the next couple of years. " Folks -- not everyone is eligible (medically speaking) for transplantsurgery. I certainly am not!!! I cannot have general anesthesia andI've got a sneakin' suspicion that transplant surgery without anesthesia would be a bit of a bummer, dontcha know??!! So, no, Idon't fit this category either. Please try to remember that eventhough the overwhelming majority here are going the transplant route,there are a few who can't. And, personally, I'm just fine with that! I'm totally at peace with my situation which I think probably givesme somewhat of an advantage simply from not having to deal with themind-boggling stress of that emotional roller coaster!As for the last choice .... again we have an assumption -- this time being that everyone is taking urso. There are a few of us who can'ttolerate the drug. From my perspective, I don't see that I'm anyworse off for it. Certainly I'm not getting sicker any faster than the majority of the group. And Heaven knows I don't miss the expenseof the drug!Regards,Carolyn B. in SC=============================>> > Enter your vote today! A new poll has been created for the > group:> > would you consider yourself?? > > o a family member or caregiver of a pscer > o someone with the psc diagnosis but no signs, not on disability,still living a normal life > o someone who has had a liver transplant > o someone in the midst of psc who is disabled because of it andvery sick hoping for a liver transplant within the next couple of years > o someone who is still working, but taking urso, feeling fatigued and slowing down -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2007 Report Share Posted August 25, 2007 Hi Ian If possible, a few other categories may be in order: (i.e., on URSO but otherwise asymptomatic and leading a relatively active life). I completed my cycling fundraiser last weekend where I cycled 840km (525mi) over 4 days. Completing it was definitely a challenge but doing so made me feel so much better. It allowed me not to have to think about my medical concerns. On the other hand, I definitely have PSC, UC, osteoporosis, and two previous DVTs. I'm also taking a host of pills (including URSO) and leading an otherwise " normal " life. Thanks Quote Link to comment Share on other sites More sharing options...
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