Guest guest Posted September 22, 2000 Report Share Posted September 22, 2000 I agree with you. My main concern is that if they do find out they need to add points for cholang, bleeds, encef, ascit. etc. it will take months - up to a year Mr. said, before it can be acted on. We all know how slow our gov. moves. Who knows what can happen during that amount of time. I just wish they would take more time and come up with a plan that does not treat all liver disease the same, but is fair to all who need txs. I think it can be done. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2000 Report Share Posted September 22, 2000 I agree with you. My main concern is that if they do find out they need to add points for cholang, bleeds, encef, ascit. etc. it will take months - up to a year Mr. said, before it can be acted on. We all know how slow our gov. moves. Who knows what can happen during that amount of time. I just wish they would take more time and come up with a plan that does not treat all liver disease the same, but is fair to all who need txs. I think it can be done. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 Aubrey Goldstein wrote: > > Hi , > > Doesn't sound like asterixis to me. Tremor comes in many forms. So it > might just be that. Would it be normal to have hands shaking about 1 " (2.5 cm) (at the tips of my fingers)? I can control it, but when I just let it go, it's about that much... sometimes even more. So far it hasn't been too much of a problem, but it's starting to make it hard to type etc. at times... I know it's probably impossible to diagnose definitely over the internet! I've got an appointment with my hepatologist next month, so I will let him look at it.... Thanks for the info! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 " T.J. Henshaw " wrote: > Are you drinking very much caffeine ? It sometimes makes hand tremors > worse. No, I drink almost no caffeine, and on the rare occasions that I do, I haven't noticed any difference. > Or, you might want to ask your Dr. when you see him if he wants to increase > your propranolol. This is assuming you take it, which with your bleed I > would think you do. Yes, I take Nadolol which is similar. I think I must be on the max. dose already, because after my last EGD, when they found the varices coming back, he put me on ISMO in addition to the Nadolol. Unfortunately, I reacted badly to the ISMO (bad headaches etc.) and he told me to stop taking it. Thanks for the suggestions! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 " T.J. Henshaw " wrote: > Are you drinking very much caffeine ? It sometimes makes hand tremors > worse. No, I drink almost no caffeine, and on the rare occasions that I do, I haven't noticed any difference. > Or, you might want to ask your Dr. when you see him if he wants to increase > your propranolol. This is assuming you take it, which with your bleed I > would think you do. Yes, I take Nadolol which is similar. I think I must be on the max. dose already, because after my last EGD, when they found the varices coming back, he put me on ISMO in addition to the Nadolol. Unfortunately, I reacted badly to the ISMO (bad headaches etc.) and he told me to stop taking it. Thanks for the suggestions! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 " T.J. Henshaw " wrote: > Are you drinking very much caffeine ? It sometimes makes hand tremors > worse. No, I drink almost no caffeine, and on the rare occasions that I do, I haven't noticed any difference. > Or, you might want to ask your Dr. when you see him if he wants to increase > your propranolol. This is assuming you take it, which with your bleed I > would think you do. Yes, I take Nadolol which is similar. I think I must be on the max. dose already, because after my last EGD, when they found the varices coming back, he put me on ISMO in addition to the Nadolol. Unfortunately, I reacted badly to the ISMO (bad headaches etc.) and he told me to stop taking it. Thanks for the suggestions! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2000 Report Share Posted October 21, 2000 are you getting all the posts....I never recieved the original post from ...and never saw you orginal answer to her....so it makes it confusing when you get someone to say thank you ...when you have never seen anything on them.... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2000 Report Share Posted November 18, 2000 Has anyone seen a reference to when these rules are actually expected tobe implemented? ------- UNOS is giving the new rules to Shalala Nov.16 & 17 in Washington D.C. Since the new contract has been signed, I would expect it won't take long after that. I "think" you may still have time - as it will take awhile to info everyone and put it into practice. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2000 Report Share Posted November 18, 2000 Has anyone seen a reference to when these rules are actually expected tobe implemented? ------- UNOS is giving the new rules to Shalala Nov.16 & 17 in Washington D.C. Since the new contract has been signed, I would expect it won't take long after that. I "think" you may still have time - as it will take awhile to info everyone and put it into practice. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 We haven't heard from you lately. Everything OK ?? Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 " T.J. Henshaw " wrote: > > We haven't heard from you lately. > Everything OK ?? Yeah, just been kind of busy! (I also got a pretty bad cold last week, but I'm better now) Just got back from thanksgiving at my sister's house yesterday, and am trying to catch up on emails again. I did get approval from my insurance company to have the evaluation for the tx list, so now I just need to hear from the people at Vanderbilt to schedule the appointment(s). If they don't call by tomorrow, I'll call them and see what's going on. Thanks for noticing I hadn't been around! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 " T.J. Henshaw " wrote: > > We haven't heard from you lately. > Everything OK ?? Yeah, just been kind of busy! (I also got a pretty bad cold last week, but I'm better now) Just got back from thanksgiving at my sister's house yesterday, and am trying to catch up on emails again. I did get approval from my insurance company to have the evaluation for the tx list, so now I just need to hear from the people at Vanderbilt to schedule the appointment(s). If they don't call by tomorrow, I'll call them and see what's going on. Thanks for noticing I hadn't been around! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 athan, Taking your wife or someone with you when you do the transplant evaluation is a very good idea. My husband went with me and remembered a whole lot more than I did. This was really helpful when we talked to the social worker, the business office and the psychiatrist. Barby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 athan, Taking your wife or someone with you when you do the transplant evaluation is a very good idea. My husband went with me and remembered a whole lot more than I did. This was really helpful when we talked to the social worker, the business office and the psychiatrist. Barby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 athan, Taking your wife or someone with you when you do the transplant evaluation is a very good idea. My husband went with me and remembered a whole lot more than I did. This was really helpful when we talked to the social worker, the business office and the psychiatrist. Barby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 ----- Original Message ----- From: " athan " > I did get approval from my insurance company > to have the evaluation for the tx Thats GOOD news .. Takes a load off your mind to know they are coming through with the BIG bucks. Now get ready for the : blood taking picture taking blood taking pee pee taking blood taking diet taking blood taking info taking taking taking We did a computor print out of ALL info and made several copies -- sure made answering questions easy - just hand them a page with " Everything You Ever Wanted To Know About athan " Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 ----- Original Message ----- From: " athan " > I did get approval from my insurance company > to have the evaluation for the tx Thats GOOD news .. Takes a load off your mind to know they are coming through with the BIG bucks. Now get ready for the : blood taking picture taking blood taking pee pee taking blood taking diet taking blood taking info taking taking taking We did a computor print out of ALL info and made several copies -- sure made answering questions easy - just hand them a page with " Everything You Ever Wanted To Know About athan " Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 " T.J. Henshaw " wrote: > We did a computor print out of ALL info and made several copies -- sure made > answering questions easy - just hand them a page with > " Everything You Ever Wanted To Know About athan " Sounds like a good idea! I've been thinking of getting a little cassette recorder so I can remember the stuff they tell me. I have a really hard time taking notes, and keeping my mind on the conversation at the same time. Or maybe I should just get my wife to be my secretary, and write down the important stuff! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 " T.J. Henshaw " wrote: > We did a computor print out of ALL info and made several copies -- sure made > answering questions easy - just hand them a page with > " Everything You Ever Wanted To Know About athan " Sounds like a good idea! I've been thinking of getting a little cassette recorder so I can remember the stuff they tell me. I have a really hard time taking notes, and keeping my mind on the conversation at the same time. Or maybe I should just get my wife to be my secretary, and write down the important stuff! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 " T.J. Henshaw " wrote: > We did a computor print out of ALL info and made several copies -- sure made > answering questions easy - just hand them a page with > " Everything You Ever Wanted To Know About athan " Sounds like a good idea! I've been thinking of getting a little cassette recorder so I can remember the stuff they tell me. I have a really hard time taking notes, and keeping my mind on the conversation at the same time. Or maybe I should just get my wife to be my secretary, and write down the important stuff! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 > Or maybe I should just get my wife to be my > secretary, and write down the important stuff! Both sound like a good idea. When Ken was in taking pictures, or giving blood. It gave me a chance to ask questions or ( in my case ) get clearer answers. But, athan when we went we knew 00 about PSC and txs. You are really informed and will probably hear nothing you don't already know. I would bet you could give a class or two yourself. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 > Or maybe I should just get my wife to be my > secretary, and write down the important stuff! Both sound like a good idea. When Ken was in taking pictures, or giving blood. It gave me a chance to ask questions or ( in my case ) get clearer answers. But, athan when we went we knew 00 about PSC and txs. You are really informed and will probably hear nothing you don't already know. I would bet you could give a class or two yourself. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 > Or maybe I should just get my wife to be my > secretary, and write down the important stuff! Both sound like a good idea. When Ken was in taking pictures, or giving blood. It gave me a chance to ask questions or ( in my case ) get clearer answers. But, athan when we went we knew 00 about PSC and txs. You are really informed and will probably hear nothing you don't already know. I would bet you could give a class or two yourself. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 Well said Lynn Re:athan > athan, > Every single one of us has thought about the tragedy > that gives us life. I don't think we can help you on this - or you help us > with it. I often think about the parents who > will lose their son or daughter - and my son benefiting from their loss. I > think because we hang on to every minute of life, and fight so hard for it, > we better understand the loss and feel a special connection to the pain. > But I think we all have to find a way to make it ok - within ourselves, > however we get there and whatever it takes. You have a young daughter who > needs her father, I say accept the gift, make the most of it and honor it > by fighting hard no matter what. > In Texas today prayers are being said for the young victim of a skiing > accident and his family. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 > You see, my sister asked me if I wanted her to talk to > the family about a directed donation to me athan, I know I'm butting in here. But what if the shoe was on the other foot ?? Say it was your sister who had the accident, of course you and all of us would be praying for her full recovery. But " IF " the doctors said she would not make it, zero chance of recovery, would you and your family make the decision to donate ?? Would you donate so someone else could live ?? Could your family be that giving ?? Don't you think you would say " It would honor her so much. " " It would be just like her to save someone else. " Many people think of donating as a privilege . How often do we get a chance to save someones life ? Don't you think you could and would do it ?? At Christmas - when your daughter opened her gifts what was it that pleased you most ?? Was it she would think -- WOW DADS NEAT -- or was it seeing the pleasure SHE would have opening that present. Think about JQ - she got to meet her donors parents. They have formed a real bond, and it has helped all of them to heal. If it's offered to you, I say take it. Thank God for the gift , honor the donor, remember it is better to give than receive, allow the family to give .. It is the last chance they will have to honor their son's life, by giving it to someone else. Take it, say thanks then move on. Don't think to hard about it. It's a spare part - not the person - their soul lives on and so do the families memories. Quote Link to comment Share on other sites More sharing options...
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