Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 Shona Maynard wrote: Hi everyone, Just wondering......I take daily tablet medication and am wondering if this will be a problem in the early days post-operatively.?? Thanks, Shona Only 5 days to go! Shona: When I was early band - I just took all the pills and threw them in the blender with the AM protein drink. -- Wayne http://www.waynesmith.net/weight ( Updated every Thursday ) 07-10-1999 - 315 lb. - Dr Rumbaut - Monterrey, Mexico --------------------------------------------------- Tag Line for Today: "Democracy is the art of running the circus from the monkey cage." -- H. L. Mencken --------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 Tough question. From the UNOS data base, the average time nationally is measured in years. Each region will have a different average time. BTW, a not bad approach is to see which regions have shorter times and consider being listed in those regions - there is so limit on the number of hospitals or in what regions you can be listed. Before being listed outside of your immediate area, make sure you look into the financial and follow-up health care issues. Everybody, though is individual. One approach is to say it is a 50-50 proposition: either you get the transplant in a specific period of time or you don't. What I am trying to say, don't stress over a specific time. Wnen you get the call, you get the call. Just do the best you can until then. Jerry > What is the average time frame from dx to tx? > > Thanks! > > Gema > > Thought I'd share this beauty (Kit) with all of you. Taken on Sunday! > --------------------------------------------- This message was sent using the LA Free-Net - LA's best kept secret. http://www.lafn.org/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 I meant when is it medically necessary for a person with PSC from the time dx'ed to the tx? Thanks, Gema Re: question Tough question. From the UNOS data base, the average time nationally is measured in years. Each region will have a different average time. BTW, a not bad approach is to see which regions have shorter times and consider being listed in those regions - there is so limit on the number of hospitals or in what regions you can be listed. Before being listed outside of your immediate area, make sure you look into the financial and follow-up health care issues.Everybody, though is individual. One approach is to say it is a 50-50 proposition: either you get the transplant in a specific period of time or you don't. What I am trying to say, don't stress over a specific time. Wnen you get the call, you get the call. Just do the best you can until then.Jerry> What is the average time frame from dx to tx?> > Thanks!> > Gema> > Thought I'd share this beauty (Kit) with all of you. Taken on Sunday!> ---------------------------------------------This message was sent using the LA Free-Net - LA's best kept secret.http://www.lafn.org/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 Gema, Neat picture! Your question is difficult to answer because of the way PSC affects different individuals differently. Some people go decades without a TX, and have no plans to have one anytime soon. Others go from dx to tx within a few years. A lot depends on how you were diagnosed. That is, if you were symptomatic, with jaundice or right upper quadrant pain, or itching that wasn’t controllable with ointments, creams, etc., the chances are that the PSC is in a more advanced stage, and it’s quite possible that you might need a transplant sooner. If you were asymptomatic, and PSC was diagnosed after something like a routine physical or insurance physical showed some problems, PSC could be in its early stages, and it might be possible to avoid tx for a longer period. The major problem is that the only treatments available to this point are for relief of symptoms – there’s not as yet any magic bullet that will cure PSC. Even transplantation is not a cure so much as a treatment – substituting a chronic condition that can be controlled (rejection) for one that can’t. Steve Rahn L Tx 9/6 & 9/8 '85. (Wash. U-STL) Listed for Re - Tx (U of Iowa) " Do not go gentle into that good night Rage, rage against the dying of the light " (Dylan ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 Thanks Steve, Just trying to digest more information about this ailment. xxooxx Gema RE: question Gema, Neat picture! Your question is difficult to answer because of the way PSC affects different individuals differently. Some people go decades without a TX, and have no plans to have one anytime soon. Others go from dx to tx within a few years. A lot depends on how you were diagnosed. That is, if you were symptomatic, with jaundice or right upper quadrant pain, or itching that wasn’t controllable with ointments, creams, etc., the chances are that the PSC is in a more advanced stage, and it’s quite possible that you might need a transplant sooner. If you were asymptomatic, and PSC was diagnosed after something like a routine physical or insurance physical showed some problems, PSC could be in its early stages, and it might be possible to avoid tx for a longer period. The major problem is that the only treatments available to this point are for relief of symptoms – there’s not as yet any magic bullet that will cure PSC. Even transplantation is not a cure so much as a treatment – substituting a chronic condition that can be controlled (rejection) for one that can’t. Steve Rahn L Tx 9/6 & 9/8 '85. (Wash. U-STL) Listed for Re - Tx (U of Iowa) "Do not go gentle into that good night Rage, rage against the dying of the light" (Dylan ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 Gema, Is that you with that beautiful creature? He looks alot like our Major, one of the beauties that I grew up with. You didn't clarify that so I just had to make sure before I started putting that face with your name, then finding out that you are a flaming redhead ! :-) That was a great article, quite scary but totally believable. I have heard that before,not so well explained, but never given it much thought as to being proactive about it. I do try to buy mostly organic and most are from California or Oregon I believe. I guess I could call the 1-800 no.s and bug them about this huh? Hey, thanks for giving me something else to worry about, girlfriend! :-) You feeling OK? Faith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2003 Report Share Posted June 3, 2003 Hey Girlfriend... yeap that be me!! The picture was taken this past Sunday. Kit belongs to my girlfriend and I ride him often. He is a beauty and a real spunk! Hey guess what... I use to be a flaming redhead once!!! Feeling great, next ERCP June 12 and I plan on knocking the socks of of these doctors! Have a blessed day! Gema On Tue, 3 Jun 2003 00:48:36 -0400 Faith D Scheidt wrote: Gema, Is that you with that beautiful creature? He looks alot like our Major, one of the beauties that I grew up with. You didn't clarify that so I just had to make sure before I started putting that face with your name, then finding out that you are a flaming redhead ! :-) That was a great article, quite scary but totally believable. I have heard that before,not so well explained, but never given it much thought as to being proactive about it. I do try to buy mostly organic and most are from California or Oregon I believe. I guess I could call the 1-800 no.s and bug them about this huh? Hey, thanks for giving me something else to worry about, girlfriend! :-) You feeling OK? Faith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2003 Report Share Posted June 3, 2003 Hi Gema, A belated welcome to the group. I've done more lurking than writing lately. I had PSC for 25+ yrs before I was transplanted and I was tx before I was really sick. This thing treats everybody different and hopefully yours will creep along too. Something to keep in mind, is that livers can be dedicated to a certain person by the deceased family also. This is what happened to me and why i got mine a little earlier. They found that my liver had a hepatoma inside during post tx biopsy so I would have been at or near the top of the list anyway had they known. Tim L PS also from Mich Tim Long UC / PSC 25+ yrs TX 8/2/02 married 36 yrs, 2 daughters & 2 grandkids Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 Well Mark and I are here in Phoenix for what started out as a repeat of the previous testing. Liver biopsy and ERCP, it has turned in to another ordeal. During the ERCP, the doctor fed the wire thru the liver and into the peritoneum. He is unaware if it was already there or he caused it. If it was already there, it explains the LARGE fluid collection in his abdomen which we thought was from the pancreas. So he bought himself another nights stay at Mayo. I am just waiting for the surgeon this morning to find out where we go from here. thanks , Mark in Vegas' wife Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 Janie, I know that there are people that are more knowledgeable than myself on the group, but I will take a shot at answering your question. I think after a year the docs try decreasing current autoimmunue suppressants, and if that is successful they try more after a while. I read somewhere that a very small percentage of ppl eventually are weaned off the meds. But than again Im sure someone else can give you more insight to your question. Saul UC - 94 PSC - 95 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 If you take your meds as directed, for almost every post transplant there is no " fight " . Rejection is not in the fore-front of your thought and, for me, not even ever considered. As to whether or not your new liver becomes part of your body, I suggest you research the subject chimerism. Jerry > Steve mentioned that in getting a transplant, you are trading a > chronic condition that cannot be controlled for another one that can > be:rejection. Does that mean that after you receive a transplant you > are always fighting rejection? Does your body ever just accept the > new liver as part of your own body, or do you always have to fight to > keep from rejecting it? > Janie > > > > > > Quote Link to comment Share on other sites More sharing options...
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