Guest guest Posted August 30, 2000 Report Share Posted August 30, 2000 >Would it be a fair statement that Europeans are ahead of us in their >thinking and treatment of some disorders and their prescribing of >alternatives....??? Mette's Danish doctor prescribed UDCA.. and has not mentioned any alternatives.. as far as I'm aware there are no known alternatives for UDCA in treating PSC that have any body of testing to prove or disprove effectiveness.. well, as far as that goes UDCA is not such a proven therapy for PSC either.. we do plan to talk to him about the higher dose level and milk thistle (when we finally get in to see him) DenverD: husband of Mette (44), UC '73, dx PSC 6/2000 alive in Denmark <www.Texan.dk> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2000 Report Share Posted August 31, 2000 > >Would it be a fair statement that Europeans are ahead of us in their > >thinking and treatment of some disorders and their prescribing of > >alternatives....??? Well, I'm not really an expert on this or anything, and I guess the answer might depend on what point of view you take, but I have heard that alternatives are more accepted by the mainstream medical community there. I think they are also more regulated, which is why herbals from Europe are supposed to be more likely to be of good quality, and more likely to actually be what they say they are! ahtan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2000 Report Share Posted September 9, 2000 athan, Did you reread page 12 ? If I am reading right I wouldn't want TIPS and would rather take my chances with another bleed. If what you say about organ donor is right ( and that makes sense to me ) thats better than my thinking it's sitting in some cooler some where. But still think it would be awlful for donor family to sit around waiting for their love one to donate -- it could take several hours. What do you think about the new policy ? Barb No, not everyone has this procedure. Actually I'd be interested to knowif anyone here has had it done, and what the effects were. I'm in theposition that if I have another bleed they'll probably want to do a TIPSprocedure on me (It helps to alleviate some of the problems associatedwith portal hypertension).athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2000 Report Share Posted September 11, 2000 " T.J. Henshaw " wrote: > > athan,> Did you reread page 12 ? If I am reading right I > wouldn't want TIPS and >would rather take my chances with another > bleed. > > It's definitely true that a TIPS procedure is a tradeoff. They are > trying to prevent a rebleed with banding right now, so hopefully that > will work and I won't need to decide on the TIPS issue. I think that > my doctor is worried that the bleeding might be a more pressing risk > right now than liver failure. My liver function has been prety good > lately, and I'm not able to get on the list, so I may have quite a > while to wait before I can get a transplant. > > Another consideration is the fact that my MELD score is pretty low > (-3). That means that (at least theoretically) I should tolerate a > TIPS procedure pretty well. Of course, UNOS seems to think that since > my MELD score is low I'd also tolerate a bleed pretty well too. At > least that seems to be their reasoning for not giving it extra points > in the proposed scoring system. > > I'm sure that my doctor would reevaluate all the factors if I do have > another bleed and make his decision based on what's happening then. > If I'm on the list by then, and my liver function is siginificantly > worse, it would probably not be as good of an idea to do the TIPS > procedure. That's part of why I'm trying to learn about these things > now. I want to be able to understand what the alternatives are, and > what the considerations are so that I can have some input into the > descision. > > What do you think about the new policy ? > > I think UNOS is honestly trying to be fair, and I think the MELD > scoring system is a reasonable model to use. On the other hand, I'm > pretty sure it will make me have to wait longer for a transplant, > especially if they don't give any extra points for life-threatening > complications like variceal bleeding. > > athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2000 Report Share Posted September 11, 2000 Thanks athan for your input. Sounds like you and Tim don't mind the new policy. I on the other hand have several problems with it. I sure don't know how much UNOS will listen to the people they serve but I sure hope they will. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2000 Report Share Posted September 11, 2000 Barb, When are you going to the meeting again? I want to write something but have had trouble sitting and I have been too busy at work lately. I'd like to try to write. Peg -----Original Message-----From: T.J. Henshaw Sent: Monday, September 11, 2000 4:53 PMTo: egroupsSubject: Re: athan Thanks athan for your input. Sounds like you and Tim don't mind the new policy. I on the other hand have several problems with it. I sure don't know how much UNOS will listen to the people they serve but I sure hope they will. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2000 Report Share Posted September 22, 2000 What a shame we can't get all of them to be active in letter writing !! We all know at some point they are going to care about the MELD scores. It's much easier to get what we need now before it goes into law - than after. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2000 Report Share Posted September 22, 2000 >It's much easier to get what we need now before it goes into law - than after. >Barb Yes, that's true. Actually I think that if they do make this change it will be almost impossible to go back the other way even if they decide that the change isn't working out as well as they thought. Since they're going to emphasize more medically urgent patients, the less medically urgent patients won't have lost their chance at a transplant (for the most part)... it will just have been postponed. But if they try to go back the other way, and emphasize transplantation at the most medically effective point of liver failure, then those who have already passed that point will miss out on their chance of transplant altogether! I don't know if that makes sense! I think it does, but I'm not sure I expressed it very understandably! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2000 Report Share Posted September 22, 2000 >It's much easier to get what we need now before it goes into law - than after. >Barb Yes, that's true. Actually I think that if they do make this change it will be almost impossible to go back the other way even if they decide that the change isn't working out as well as they thought. Since they're going to emphasize more medically urgent patients, the less medically urgent patients won't have lost their chance at a transplant (for the most part)... it will just have been postponed. But if they try to go back the other way, and emphasize transplantation at the most medically effective point of liver failure, then those who have already passed that point will miss out on their chance of transplant altogether! I don't know if that makes sense! I think it does, but I'm not sure I expressed it very understandably! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2000 Report Share Posted September 30, 2000 > Hmmm. I wonder how this figures in with the Mayo PSC model UNOS used 4 different models to come up with MELD - one of which was the MAYO PSC Model. They didn't publish all of them , and alot of people were mad because they couldn't figure out - like you where non- TIPS fit in. They were very sorry and promised to do better publishing their reports. - significant enough to be an accurate predictor. If that's > what they're saying, and if they're right, that's a good thing. I still > question whether it is actually true though. This is exactly what they are saying -- I have alot of paper work that I ( shall we say " lifted " while they were at lunch ) haven't had time to read , but one chart lists: MELD MELD w/Risk Factor Variceal bleed : Historical cirrhotics: 182 189 Hospitalized cirrhotics 92 93 Ascites : Hospitalized 90 96 Encephalopathy: Hospitalized 90 100 So you see they are saying the score isn't much changed by adding risk. Also on this chart is the " P " (dealth) factor and the MELD & MELD/risk #'s are even closer. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 > OK That gave me a score of 7... but the page used to have a choice of disease type (alcoholic or cholestatic vs. all others), and it's not there now athan, Did you go to the address I gave ? The Meld score on that page just gives whole #'s, but they said it would round up. I don't think disease is weighing as heavy as before. > Actually they're all symptoms of liver damage. Yes, they're secondary > symptoms, but the cause is still the same. I know for a fact I'm not getting all this right. I tryed real hard to write down everything they said. But they were talking to doctors who understood what they were saying, and I don't think they would of been happy with me if I stood up and said slow down or how to you spell that ? Besides when they just happened to mention that bleeds etc. didn't matter in the big picture I kinda " lost it " of course you all know me --- sweet thing that I am. They were really lucky I let them all live. So there may be parts I didn't get or got wrong. It was hard to see with all the smoke coming from my ears. The thing I do know is this MELD is a done deal. So like it or not ( I'm not 100% happy about it ) we have to fight with UNOS inside the lines of MELD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 You're a kick! I would have liked to have been there. I think you did an excellent job. I can't even keep up with your description without zoning out - that's no reflection on your description, just I'm so tired of all this stuff and can't concentrate on the figures of it. I guess I'm kind of feeling WHAT'S THE USE! Sorry. Some day I'll try to figure it out. Peg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2000 Report Share Posted October 7, 2000 Hi there.. Today Ty go up about 9 and did some homewrok some computer stuff and then got ready to leave for band practice....this is marching band...outside for hours and then off to a competion....he gets thru a day like this better than one where he is not very active...very odd....he probably won't be home till midnight...but tomorrow he will get the usual nap that his body needs....and by 9pm he is ready for bed...The hardest thing is to be tired and not be able to sleep at night.... Hope you are having a nice weekend.... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2000 Report Share Posted October 7, 2000 Hi there.. Today Ty go up about 9 and did some homewrok some computer stuff and then got ready to leave for band practice....this is marching band...outside for hours and then off to a competion....he gets thru a day like this better than one where he is not very active...very odd....he probably won't be home till midnight...but tomorrow he will get the usual nap that his body needs....and by 9pm he is ready for bed...The hardest thing is to be tired and not be able to sleep at night.... Hope you are having a nice weekend.... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2000 Report Share Posted October 7, 2000 Hi, Luanne. Your day sounds a lot like mine. My son is also in the marching band at High School, and he also had competition today. He had to go to Bay Minette, Alabama. The band received Superior rating. How did Ty's band do? Where does he go to school? I know you probably don't live anywhere close to us, but it was unusual that both our sons had band competition today. Sue in Florida. Re: athan > Hi there.. > Today Ty go up about 9 and did some homewrok some computer stuff and then got > ready to leave for band practice....this is marching band...outside for hours > and then off to a competion....he gets thru a day like this better than one > where he is not very active...very odd....he probably won't be home till > midnight...but tomorrow he will get the usual nap that his body needs....and > by 9pm he is ready for bed...The hardest thing is to be tired and not be able > to sleep at night.... > Hope you are having a nice weekend.... > Luanne Ty's mom > > > > > ____________NetZero Free Internet Access and Email_________ Download Now http://www.netzero.net/download/index.html Request a CDROM 1- ___________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 ----- Original Message ----- From: " athan " I always worry that they'll test my ammonia etc. and decide that I don't have it after all... I'm not sure if I agree with you about testing. After all, tests were made by humans ( who are not perfect ) to measure different things. Since we know for a fact that no 2 people are alike, seems to me what might be normal for me couldn't possibily be normal for you. I think " normals values " are more like guidelines. So while ammonia #'s are important and should be looked at. It's my thinking that both you and your wife are a much better judge on " fog " . How many stories have you heard where a patient goes to the doctor with a problem and the doc says everything is ok . Only later to find out something was wrong , and the patient knew it all along. Driving past a red light with your wife in the car is not something you would do - even if you were thinking about something else - we just don't do that - it goes against every thing we have been taught. It's not " plain stupidity " . Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 I believe we've been told that ammonia levels aren't conclusive on testing for Brain fog too. Course even though I've been taught not to go through a red light, I have on occasion stopped at a light and then gone through, when my mind was not on my driving for me who doesn't have PSC, it is stupidity or lack of concentration. I believe you are on lactalose aren't you. The doctor said if it helps you then it probably is brain fog. Phil tried it and thought it helped but I had to admit it didn't make much difference for him an since he isn't into cirrhosis yet I guess I have to agree that his is more distraction and lack of concentration rather than brain fog. I am in my mid 50's and have been having memory problems for a long time so I'm sure that can happen at earlier ages so determining brain fog has got to be one of the biggest challenges and I hate to think we wouldn't do anything about it until one totally forgets where they are and can't get home from someplace or has more serious complications. Peg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 I agree that it probably is brain fog. Especially after I accidently left work an hour early the next day! I just got up and walked out, and drove home. My wife said " your home early! " and I realized I'd left at 4:00 instead of 5:00! I have no idea where I got the idea it was time to leave... As far as testing the ammonia, I guess the thing I'm afraid of is that the test will come out normal, and the doctors will decide there's nothing wrong with me after all. I'm pretty convinced that something's going on, and so are my doctors... I just don't want them to change their minds (not because I want there to be something wrong, but because I think there is and I want them to recognize it.) athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 Especially after I accidently left work an hour early the next day! I just got up and walked out, and drove home. My wife said " your home early! " and I realized I'd left at 4:00 instead of 5:00! I have no idea where I got the idea it was time to leave... I know it's not really funny but I'd sure like to have an excuse like that to leave work early. In all seriousness I think the doctor said that things like you are doing more describe brain fog than the ammonia testing can do. I think you are given points for that. Be sure to let your doctors know. I'm surprised that they haven't listed you cause with that and the bleeding varacies I would think you should be listed. When Phil went for listing the coordinator told us to let them know if Phil was doing things like that. Peg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 Peggy Alfeld wrote: > > I believe we've been told that ammonia levels aren't conclusive on testing > for Brain fog too. > > Course even though I've been taught not to go through a red light, I have on > occasion stopped at a light and then gone through, when my mind was not on > my driving for me who doesn't have PSC, it is stupidity or lack of > concentration. > > I believe you are on lactalose aren't you. Yes. It seemed to help, but recently I've been having some more strange episodes. Before I went on it I'd forget things, but realize that I'd forgotten something. More recently, I've been forgetting things, but not realizing that I'd even forgotten! I guess if it was just once going through a light, I'd probably just pass it off, but there were enough things happening that just weren't normal for me (especially before I went of the lactulose) that I think something is wrong... It is hard to tell though, 'cause it's so subjective, and has to be compared with what's 'normal' for each person. Also it tends to develop so gradually, that by the time it gets bad, you've gotten used to it and developed coping mechanisms. I used to be very good at remembering things without writing them down... never took any notes in college (except for once in a while to write down assignments etc.), now I carry a notebook in my pocket all the time, and if I don't write something down within about 10 seconds of when I hear it, it's gone! I guess that's enough rambling for now! athan The doctor said if it helps you > then it probably is brain fog. Phil tried it and thought it helped but I > had to admit it didn't make much difference for him an since he isn't into > cirrhosis yet I guess I have to agree that his is more distraction and lack > of concentration rather than brain fog. I am in my mid 50's and have been > having memory problems for a long time so I'm sure that can happen at > earlier ages so determining brain fog has got to be one of the biggest > challenges and I hate to think we wouldn't do anything about it until one > totally forgets where they are and can't get home from someplace or has more > serious complications. > > Peg > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 > I'm surprised that they haven't listed you . athan, I'm with Peg on this. In my view you should push to be listed. I think anyone who is " close " to being listed, should - because of new rules you might be much better off Grandfathered in. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 Again, I encourage you to report these things to your doctor because the transplant coordinator stressed that was the kind of stuff to look for and I really think you should be pushing to get listed. Where do you live? Is it somewhere where getting listed and tx happens fairly quickly, course that may change with the new Regs. I agree with Barb who agrees with me that you should push so the MOM's have spoken.LOL Peg PS - You still seem very sharp to me!!!! Do you have periods of extremely lucidity and then the forgetful times? That's how Phil is although, at this point I'm agreeing with the doctor that he doesn't have brain fog yet. Have you cut your animal protein intake? I think you are a lot like Phil - very intelligent - so when you are not that way all the time it is very distressing. Phil has going in so many directions I'm sure that adds to his memory problems, but being very intelligent, not working without having some other purposes other than keeping house would drive him crazy and would be very depressing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2000 Report Share Posted October 20, 2000 athan I have told Ty the same thing...slap for awhile...because the way he digs with the itching he will be a mess.... As far as your furniture rubbing....carpet scuffing..desk massaging...You guys are truly a funny sight....can spot you PSCers a mile away.....LOL Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2000 Report Share Posted October 21, 2000 >I never recieved the original post from there have been several in the last few days who have missed postings.. I wonder, if those were all AOL folks.. maybe there was a mail delivery problem within AOL.. maybe. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 " T.J. Henshaw " wrote: > > Are you still having nausea ?? Yes, but not as bad as I was... now I'm having abdominal pain :-( I don't really like the idea of hypnosis... I'll see if I can hold out. The nausea actually isn't too big of a problem as long as it's not so bad that it makes me throw up. Mainly concerned about the varices... Thanks for the info though... I'll keep it in mind! athan Quote Link to comment Share on other sites More sharing options...
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