Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 How can a person take a laxative when they have UC? You have all to do to keep solid bowels. That sounds discouraging. Peg wayne bryan wrote: > Hi Peg, > They give you lactulose (it is a liquid and a laxative) It brings down the > ammonia level in your blood. > > > > > >Reply-To: egroups > >To: egroups > >Subject: Re: Phil & tx list > >Date: Fri, 15 Oct 1999 15:02:59 -0700 > > > >Phil and I went to his liver doctor today. He said Phil's liver > >functions are in the normal range and his alkaline or phosphate levels > >were just slightly elevated and everything is looking good. Now we're a > >little concerned that due to the fact that he hasn't had an infecton in > >6 months that they won't put him on the list. But he is still > >recommending him for listing and we will be meeting with the tx team at > >UCLA and it will be up to them. He said that a lot depends on their > >past experiences for example if they had a previous patient like Phil > >that reoccuring infections and then they had a long period of wellness, > >so they didn't list them and then the person got an infection and died > >(that's a bit drastic of an explanation) they might think more carefully > >about listing Phil. At this time I'm not even sure he has enough points > >and I am sure that if he has no more infections before seeing them that > >if he is listed it will probably be a status 7. The main thing would be > >that he could start accruing his time on the llsit. > > > >Then we met with Kaisers transplant coordinator who went into detail > >about the various things we should watch for as far as getting him to a > >hospital and letting her know so she can notate more points and such. > >Thanks to the group I understood what she was saying very well because > >of the discriptions you all have given in regard to the various > >symptoms. There was some information that we did get from her that we > >found very helpful. I don't think she's really studied Phil's history > >yet because she really didn't know about the problems he has had but > >hopefully she'll study it now and keep up with it. I sat there thinking > >when she was explaining each problem (oh, that's what must have happened > >with Jacquelyn's surgery, or has that, or Biddy had that etc.) I > >can't imagine what it would be like to go through this without the > >knowleged I've gained through the group. I think I would be overwhelmed > >and scared to death. > > > >Biddy, you asked what Phil's symptoms are: The main reason they would > >list Phil is that he had 4 reoccuring infections from 12/28/98-3/23/99. > >His other symptoms are the constricted bile duct that wouldn't allow the > >ERCP to be completed, and the fatigue and some brain fog. > > > >Now, some of the things that the coordinator talked about made me think > >of you. She said that when the liver gets cirrhosed fluid backs up into > >the abdomen and causes bloating and PAIN. She also talked about > >bleeding varacies in the digestive tract. Then the brain fog and > >disorientation - The can give you lactilose or something like that > >(maybe someone can correct me on what the drug is, she said it was a > >liquid) to help the brain fog and that if it got too bad they could > >hospitalize you and actually do a detox on you. Now when she was > >describing it I thought of you. It seems to me that you are in this > >situation. I seriously think you need more help than you are getting. I > >don't like it when someone critisizes the treatment of our doctors but > >it seems like the doctors you are seeing don't have a clue. Can't you > >go somewhere else? Aren't there any agencies that can help you with the > >finances? I feel so bad for you. > > > >We will be praying for you, wish we could do more. Well one of the guys > >from the field is making me get to work so I have to go. I might have a > >few more questions for Tim later. > >Peg > > > > > > > > > >Biddy Santon wrote: > > > > > Hi Peggy! I hope Phil gets on the list -- seems like many on this > > > site are getting a new liver -- what a blessing! My brain fog is > > > getting so very bad, so I have my hubby, , typing this one. What > > > were and are Phil's symptoms? I meant to ask Roy the same about > > > , but forgot! Thanks! Hugs, Biddy > > > > > > Re: Vitiam B12 shotLynn, > > > > My husband Mike gets Vit. B-12 shots every two > > > > weeks and has been doing so for about 6 months > > > > now. He gets them from my family Dr. who is > > > > from England and believes in them. Apparently > > > > people with liver disease need extra It. B , it > > > > is supposed to very good for the liver and other > > > > functions as well. Mike finds that the day > > > > after he gets it he feels a bit draggy and then > > > > it really gives him a pick me up, he feels > > > > stronger after that. His specialist in Halifax > > > > agreed 100% that he get them and a nutrionist > > > > that I spoke with said they would be helpful as > > > > well. It may take awhile for him to feel the > > > > benefit from them. > > > > > > > > Patti > > > > > > > > Vizas wrote: > > > > > > > > > Hello everyone.....A few weeks ago Mikes > > > > > primary doctor gave him a B12 > > > > > shot...It really made him feel so much > > > > > better...energy wise. I really didn't > > > > > like Mike doing that without talking to his > > > > > liver doctor. Does anyone get > > > > > these? Does anyone know how it affects the > > > > > liver? > > > > > Lynn > > > > > > > > > > ---- > > > > > > >------------------------------------------------------------------- > > > > > > > > > > eGroups.com home: > > > > > /group/ > > > > > - Simplifying group > > > > > communications > > > > > > > > ------------------------------------------------- > > > > [click here] > > > > Click Here! > > > > eGroups.com home: > > > > /group/ > > > > www. - Simplifying group > > > > communications > > > > > > > > ----------------------------------------------------------- > > > > [click here] > > > > Click Here! > > > > eGroups.com home: /group/ > > > > > > > > www. - Simplifying group communications > > > > > > > > > ------------------------------------------------------------- > > > [click here] > > > Click Here! > > > eGroups.com home: /group/ > > > www. - Simplifying group communications > > > > > > ----------------------------------------------------------------------- > > > [click here] > > > Click Here! > > > eGroups.com home: /group/ > > > www. - Simplifying group communications > > > > > > > > > >------------------------------------------------------------------------ > > > >eGroups.com home: /group/ > > - Simplifying group communications > > > > > > > > ______________________________________________________ > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 How can a person take a laxative when they have UC? You have all to do to keep solid bowels. That sounds discouraging. Peg wayne bryan wrote: > Hi Peg, > They give you lactulose (it is a liquid and a laxative) It brings down the > ammonia level in your blood. > > > > > >Reply-To: egroups > >To: egroups > >Subject: Re: Phil & tx list > >Date: Fri, 15 Oct 1999 15:02:59 -0700 > > > >Phil and I went to his liver doctor today. He said Phil's liver > >functions are in the normal range and his alkaline or phosphate levels > >were just slightly elevated and everything is looking good. Now we're a > >little concerned that due to the fact that he hasn't had an infecton in > >6 months that they won't put him on the list. But he is still > >recommending him for listing and we will be meeting with the tx team at > >UCLA and it will be up to them. He said that a lot depends on their > >past experiences for example if they had a previous patient like Phil > >that reoccuring infections and then they had a long period of wellness, > >so they didn't list them and then the person got an infection and died > >(that's a bit drastic of an explanation) they might think more carefully > >about listing Phil. At this time I'm not even sure he has enough points > >and I am sure that if he has no more infections before seeing them that > >if he is listed it will probably be a status 7. The main thing would be > >that he could start accruing his time on the llsit. > > > >Then we met with Kaisers transplant coordinator who went into detail > >about the various things we should watch for as far as getting him to a > >hospital and letting her know so she can notate more points and such. > >Thanks to the group I understood what she was saying very well because > >of the discriptions you all have given in regard to the various > >symptoms. There was some information that we did get from her that we > >found very helpful. I don't think she's really studied Phil's history > >yet because she really didn't know about the problems he has had but > >hopefully she'll study it now and keep up with it. I sat there thinking > >when she was explaining each problem (oh, that's what must have happened > >with Jacquelyn's surgery, or has that, or Biddy had that etc.) I > >can't imagine what it would be like to go through this without the > >knowleged I've gained through the group. I think I would be overwhelmed > >and scared to death. > > > >Biddy, you asked what Phil's symptoms are: The main reason they would > >list Phil is that he had 4 reoccuring infections from 12/28/98-3/23/99. > >His other symptoms are the constricted bile duct that wouldn't allow the > >ERCP to be completed, and the fatigue and some brain fog. > > > >Now, some of the things that the coordinator talked about made me think > >of you. She said that when the liver gets cirrhosed fluid backs up into > >the abdomen and causes bloating and PAIN. She also talked about > >bleeding varacies in the digestive tract. Then the brain fog and > >disorientation - The can give you lactilose or something like that > >(maybe someone can correct me on what the drug is, she said it was a > >liquid) to help the brain fog and that if it got too bad they could > >hospitalize you and actually do a detox on you. Now when she was > >describing it I thought of you. It seems to me that you are in this > >situation. I seriously think you need more help than you are getting. I > >don't like it when someone critisizes the treatment of our doctors but > >it seems like the doctors you are seeing don't have a clue. Can't you > >go somewhere else? Aren't there any agencies that can help you with the > >finances? I feel so bad for you. > > > >We will be praying for you, wish we could do more. Well one of the guys > >from the field is making me get to work so I have to go. I might have a > >few more questions for Tim later. > >Peg > > > > > > > > > >Biddy Santon wrote: > > > > > Hi Peggy! I hope Phil gets on the list -- seems like many on this > > > site are getting a new liver -- what a blessing! My brain fog is > > > getting so very bad, so I have my hubby, , typing this one. What > > > were and are Phil's symptoms? I meant to ask Roy the same about > > > , but forgot! Thanks! Hugs, Biddy > > > > > > Re: Vitiam B12 shotLynn, > > > > My husband Mike gets Vit. B-12 shots every two > > > > weeks and has been doing so for about 6 months > > > > now. He gets them from my family Dr. who is > > > > from England and believes in them. Apparently > > > > people with liver disease need extra It. B , it > > > > is supposed to very good for the liver and other > > > > functions as well. Mike finds that the day > > > > after he gets it he feels a bit draggy and then > > > > it really gives him a pick me up, he feels > > > > stronger after that. His specialist in Halifax > > > > agreed 100% that he get them and a nutrionist > > > > that I spoke with said they would be helpful as > > > > well. It may take awhile for him to feel the > > > > benefit from them. > > > > > > > > Patti > > > > > > > > Vizas wrote: > > > > > > > > > Hello everyone.....A few weeks ago Mikes > > > > > primary doctor gave him a B12 > > > > > shot...It really made him feel so much > > > > > better...energy wise. I really didn't > > > > > like Mike doing that without talking to his > > > > > liver doctor. Does anyone get > > > > > these? Does anyone know how it affects the > > > > > liver? > > > > > Lynn > > > > > > > > > > ---- > > > > > > >------------------------------------------------------------------- > > > > > > > > > > eGroups.com home: > > > > > /group/ > > > > > - Simplifying group > > > > > communications > > > > > > > > ------------------------------------------------- > > > > [click here] > > > > Click Here! > > > > eGroups.com home: > > > > /group/ > > > > www. - Simplifying group > > > > communications > > > > > > > > ----------------------------------------------------------- > > > > [click here] > > > > Click Here! > > > > eGroups.com home: /group/ > > > > > > > > www. - Simplifying group communications > > > > > > > > > ------------------------------------------------------------- > > > [click here] > > > Click Here! > > > eGroups.com home: /group/ > > > www. - Simplifying group communications > > > > > > ----------------------------------------------------------------------- > > > [click here] > > > Click Here! > > > eGroups.com home: /group/ > > > www. - Simplifying group communications > > > > > > > > > >------------------------------------------------------------------------ > > > >eGroups.com home: /group/ > > - Simplifying group communications > > > > > > > > ______________________________________________________ > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 Biddy, Don't talk like that!!! We will be praying for you to keep your hopes up and that God WILL take care of you and find a solution. I will make sure that we pray for you this morning in Sunday School. DON'T GIVE UP!!!! Peg Biddy Santon wrote: Hi Peg! I shouldn't have posted yet another discouraging thing about my health. What do I know maybe this is a nightmare and I will wake up in the morning with nothing wrong with me!! If I do I will stay here with all of you and give you lots and lots of hope!! Another thing Peg, I now have no desire to put up with this any longer. I have given up on my docs and I want to be with my God NOW! I am not afraid, I just don't want any more stress on my husband and my family and friends. Don't feel sorry for me because I don't need that. All that I need is that all of you keep your hopes up and hopefully most of you will be in 's place soon! Hugs, Biddy -----Original Message----- From: Phil & Peggy Alfeld To: egroups <egroups> Date: Friday, October 15, 1999 9:05 PM Subject: Re: Phil & tx list Biddy, When will you qualify for medicare insurance? The chance of Phil being put on the list isn't over we're just not sure how UCLA will react but don't worry he's gone thorough all the preliminaries and if he gets sick again they will be able to quick put him on it. I just hope and pray that you can find doctors that will treat you as well as we've been treated and your symptoms are not in your mind they are exactly how the doctor and coordinator described them to us. Don't give up - just keep pushing. Peg Biddy Santon wrote: Peggy, I can't understand why he isn't on the list -- maybe they will put him on when you get to UCLA. Have everything crossed I can for you two! Here I go again, I feel so sorry for the families of people with this disease. You don't know exactly how to help -- really there is no help. It has got to be maddening for you. All we have to do is put up with this "devil disease" and we have, hopefully, family or friends that can or will help us. Oh how I ache for you and the other families! What are you talking about a detox place? I am so confused anymore that I can't remember anything. , my hubby, types most of my posts for me because they just do not make sense -- what else is new. I have never understood the status numbers -- my doctors have never even mentioned them in any way, so maybe it will be years before a tx. I can tell you now I will not put up with this stuff much longer. I want to get well and hopefully get back to work. I definitely have too much time on my hands and had a "pity party" today. Oh how I hate it when I get these, but I am so tired of the pain, nausea, the dizziness and all of this stuff. I know that I really, really take advantage of the young people on our list because when I do go into a "pity party" I think immediately of them and their parents. I can always be much, much worse. I hate to trash a doctor, but my doctor doesn't seem interested at all in my case. I guess it is because I have no insurance -- I have heard of this happening, but I thought I would never see it actually happen. I do hope they can sleep at night just because of money! I know I couldn't, but I have always been too soft and always given everything I can to those that were less fortunate than I was. Oh well, just another post that doesn't need to be sent. Take care of yourselves -- will be in your corner no matter what! Hugs, Biddy -----Original Message----- To: egroups <egroups> Date: Friday, October 15, 1999 6:12 PM Subject: Re: Phil & tx list Phil and I went to his liver doctor today. He said Phil's liver functions are in the normal range and his alkaline or phosphate levels were just slightly elevated and everything is looking good. Now we're a little concerned that due to the fact that he hasn't had an infecton in 6 months that they won't put him on the list. But he is still recommending him for listing and we will be meeting with the tx team at UCLA and it will be up to them. He said that a lot depends on their past experiences for example if they had a previous patient like Phil that reoccuring infections and then they had a long period of wellness, so they didn't list them and then the person got an infection and died (that's a bit drastic of an explanation) they might think more carefully about listing Phil. At this time I'm not even sure he has enough points and I am sure that if he has no more infections before seeing them that if he is listed it will probably be a status 7. The main thing would be that he could start accruing his time on the llsit. Then we met with Kaisers transplant coordinator who went into detail about the various things we should watch for as far as getting him to a hospital and letting her know so she can notate more points and such. Thanks to the group I understood what she was saying very well because of the discriptions you all have given in regard to the various symptoms. There was some information that we did get from her that we found very helpful. I don't think she's really studied Phil's history yet because she really didn't know about the problems he has had but hopefully she'll study it now and keep up with it. I sat there thinking when she was explaining each problem (oh, that's what must have happened with Jacquelyn's surgery, or has that, or Biddy had that etc.) I can't imagine what it would be like to go through this without the knowleged I've gained through the group. I think I would be overwhelmed and scared to death. Biddy, you asked what Phil's symptoms are: The main reason they would list Phil is that he had 4 reoccuring infections from 12/28/98-3/23/99. His other symptoms are the constricted bile duct that wouldn't allow the ERCP to be completed, and the fatigue and some brain fog. Now, some of the things that the coordinator talked about made me think of you. She said that when the liver gets cirrhosed fluid backs up into the abdomen and causes bloating and PAIN. She also talked about bleeding varacies in the digestive tract. Then the brain fog and disorientation - The can give you lactilose or something like that (maybe someone can correct me on what the drug is, she said it was a liquid) to help the brain fog and that if it got too bad they could hospitalize you and actually do a detox on you. Now when she was describing it I thought of you. It seems to me that you are in this situation. I seriously think you need more help than you are getting. I don't like it when someone critisizes the treatment of our doctors but it seems like the doctors you are seeing don't have a clue. Can't you go somewhere else? Aren't there any agencies that can help you with the finances? I feel so bad for you. We will be praying for you, wish we could do more. Well one of the guys from the field is making me get to work so I have to go. I might have a few more questions for Tim later. Peg Biddy Santon wrote: Hi Peggy! I hope Phil gets on the list -- seems like many on this site are getting a new liver -- what a blessing! My brain fog is getting so very bad, so I have my hubby, , typing this one. What were and are Phil's symptoms? I meant to ask Roy the same about , but forgot! Thanks! Hugs, Biddy -----Original Message----- To: egroups <egroups> Date: Thursday, October 14, 1999 7:03 PM Subject: Re: Vitiam B12 shotThe only answer we get is fatigue is part of the disease. We see the liver doctor and coordinator tomorrow and the social worker next Wed. hopefully this will result in Phil getting listed. Peg Vizas wrote: Patti....... Mike seemed to notice , within hours, that his energy level increased. He seems to feel that on the 12 or 13th day his energy level decreased. Did you find this to be so. Both of us have a bad cold so Mike's going in on Saturday to get another shot.By the way our primary care physican suggested that Mike pick up Chromium Picolate. I'm not certain what its use is, may be someone out there knows. As of yet no one at s Hopkins has sent Mike to a nuitritionist or suggested they he see someone about how to boost his energy level. What are you and others doing about this? Lynn -----Original Message----- To: egroups <egroups> Date: Sunday, October 10, 1999 8:07 PM Subject: Re: Vitiam B12 shotLynn, My husband Mike gets Vit. B-12 shots every two weeks and has been doing so for about 6 months now. He gets them from my family Dr. who is from England and believes in them. Apparently people with liver disease need extra It. B , it is supposed to very good for the liver and other functions as well. Mike finds that the day after he gets it he feels a bit draggy and then it really gives him a pick me up, he feels stronger after that. His specialist in Halifax agreed 100% that he get them and a nutrionist that I spoke with said they would be helpful as well. It may take awhile for him to feel the benefit from them. Patti Vizas wrote: Hello everyone.....A few weeks ago Mikes primary doctor gave him a B12 shot...It really made him feel so much better...energy wise. I really didn't like Mike doing that without talking to his liver doctor. Does anyone get these? Does anyone know how it affects the liver? Lynn ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 Biddy, Don't talk like that!!! We will be praying for you to keep your hopes up and that God WILL take care of you and find a solution. I will make sure that we pray for you this morning in Sunday School. DON'T GIVE UP!!!! Peg Biddy Santon wrote: Hi Peg! I shouldn't have posted yet another discouraging thing about my health. What do I know maybe this is a nightmare and I will wake up in the morning with nothing wrong with me!! If I do I will stay here with all of you and give you lots and lots of hope!! Another thing Peg, I now have no desire to put up with this any longer. I have given up on my docs and I want to be with my God NOW! I am not afraid, I just don't want any more stress on my husband and my family and friends. Don't feel sorry for me because I don't need that. All that I need is that all of you keep your hopes up and hopefully most of you will be in 's place soon! Hugs, Biddy -----Original Message----- From: Phil & Peggy Alfeld To: egroups <egroups> Date: Friday, October 15, 1999 9:05 PM Subject: Re: Phil & tx list Biddy, When will you qualify for medicare insurance? The chance of Phil being put on the list isn't over we're just not sure how UCLA will react but don't worry he's gone thorough all the preliminaries and if he gets sick again they will be able to quick put him on it. I just hope and pray that you can find doctors that will treat you as well as we've been treated and your symptoms are not in your mind they are exactly how the doctor and coordinator described them to us. Don't give up - just keep pushing. Peg Biddy Santon wrote: Peggy, I can't understand why he isn't on the list -- maybe they will put him on when you get to UCLA. Have everything crossed I can for you two! Here I go again, I feel so sorry for the families of people with this disease. You don't know exactly how to help -- really there is no help. It has got to be maddening for you. All we have to do is put up with this "devil disease" and we have, hopefully, family or friends that can or will help us. Oh how I ache for you and the other families! What are you talking about a detox place? I am so confused anymore that I can't remember anything. , my hubby, types most of my posts for me because they just do not make sense -- what else is new. I have never understood the status numbers -- my doctors have never even mentioned them in any way, so maybe it will be years before a tx. I can tell you now I will not put up with this stuff much longer. I want to get well and hopefully get back to work. I definitely have too much time on my hands and had a "pity party" today. Oh how I hate it when I get these, but I am so tired of the pain, nausea, the dizziness and all of this stuff. I know that I really, really take advantage of the young people on our list because when I do go into a "pity party" I think immediately of them and their parents. I can always be much, much worse. I hate to trash a doctor, but my doctor doesn't seem interested at all in my case. I guess it is because I have no insurance -- I have heard of this happening, but I thought I would never see it actually happen. I do hope they can sleep at night just because of money! I know I couldn't, but I have always been too soft and always given everything I can to those that were less fortunate than I was. Oh well, just another post that doesn't need to be sent. Take care of yourselves -- will be in your corner no matter what! Hugs, Biddy -----Original Message----- To: egroups <egroups> Date: Friday, October 15, 1999 6:12 PM Subject: Re: Phil & tx list Phil and I went to his liver doctor today. He said Phil's liver functions are in the normal range and his alkaline or phosphate levels were just slightly elevated and everything is looking good. Now we're a little concerned that due to the fact that he hasn't had an infecton in 6 months that they won't put him on the list. But he is still recommending him for listing and we will be meeting with the tx team at UCLA and it will be up to them. He said that a lot depends on their past experiences for example if they had a previous patient like Phil that reoccuring infections and then they had a long period of wellness, so they didn't list them and then the person got an infection and died (that's a bit drastic of an explanation) they might think more carefully about listing Phil. At this time I'm not even sure he has enough points and I am sure that if he has no more infections before seeing them that if he is listed it will probably be a status 7. The main thing would be that he could start accruing his time on the llsit. Then we met with Kaisers transplant coordinator who went into detail about the various things we should watch for as far as getting him to a hospital and letting her know so she can notate more points and such. Thanks to the group I understood what she was saying very well because of the discriptions you all have given in regard to the various symptoms. There was some information that we did get from her that we found very helpful. I don't think she's really studied Phil's history yet because she really didn't know about the problems he has had but hopefully she'll study it now and keep up with it. I sat there thinking when she was explaining each problem (oh, that's what must have happened with Jacquelyn's surgery, or has that, or Biddy had that etc.) I can't imagine what it would be like to go through this without the knowleged I've gained through the group. I think I would be overwhelmed and scared to death. Biddy, you asked what Phil's symptoms are: The main reason they would list Phil is that he had 4 reoccuring infections from 12/28/98-3/23/99. His other symptoms are the constricted bile duct that wouldn't allow the ERCP to be completed, and the fatigue and some brain fog. Now, some of the things that the coordinator talked about made me think of you. She said that when the liver gets cirrhosed fluid backs up into the abdomen and causes bloating and PAIN. She also talked about bleeding varacies in the digestive tract. Then the brain fog and disorientation - The can give you lactilose or something like that (maybe someone can correct me on what the drug is, she said it was a liquid) to help the brain fog and that if it got too bad they could hospitalize you and actually do a detox on you. Now when she was describing it I thought of you. It seems to me that you are in this situation. I seriously think you need more help than you are getting. I don't like it when someone critisizes the treatment of our doctors but it seems like the doctors you are seeing don't have a clue. Can't you go somewhere else? Aren't there any agencies that can help you with the finances? I feel so bad for you. We will be praying for you, wish we could do more. Well one of the guys from the field is making me get to work so I have to go. I might have a few more questions for Tim later. Peg Biddy Santon wrote: Hi Peggy! I hope Phil gets on the list -- seems like many on this site are getting a new liver -- what a blessing! My brain fog is getting so very bad, so I have my hubby, , typing this one. What were and are Phil's symptoms? I meant to ask Roy the same about , but forgot! Thanks! Hugs, Biddy -----Original Message----- To: egroups <egroups> Date: Thursday, October 14, 1999 7:03 PM Subject: Re: Vitiam B12 shotThe only answer we get is fatigue is part of the disease. We see the liver doctor and coordinator tomorrow and the social worker next Wed. hopefully this will result in Phil getting listed. Peg Vizas wrote: Patti....... Mike seemed to notice , within hours, that his energy level increased. He seems to feel that on the 12 or 13th day his energy level decreased. Did you find this to be so. Both of us have a bad cold so Mike's going in on Saturday to get another shot.By the way our primary care physican suggested that Mike pick up Chromium Picolate. I'm not certain what its use is, may be someone out there knows. As of yet no one at s Hopkins has sent Mike to a nuitritionist or suggested they he see someone about how to boost his energy level. What are you and others doing about this? Lynn -----Original Message----- To: egroups <egroups> Date: Sunday, October 10, 1999 8:07 PM Subject: Re: Vitiam B12 shotLynn, My husband Mike gets Vit. B-12 shots every two weeks and has been doing so for about 6 months now. He gets them from my family Dr. who is from England and believes in them. Apparently people with liver disease need extra It. B , it is supposed to very good for the liver and other functions as well. Mike finds that the day after he gets it he feels a bit draggy and then it really gives him a pick me up, he feels stronger after that. His specialist in Halifax agreed 100% that he get them and a nutrionist that I spoke with said they would be helpful as well. It may take awhile for him to feel the benefit from them. Patti Vizas wrote: Hello everyone.....A few weeks ago Mikes primary doctor gave him a B12 shot...It really made him feel so much better...energy wise. I really didn't like Mike doing that without talking to his liver doctor. Does anyone get these? Does anyone know how it affects the liver? Lynn ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 Biddy, Don't talk like that!!! We will be praying for you to keep your hopes up and that God WILL take care of you and find a solution. I will make sure that we pray for you this morning in Sunday School. DON'T GIVE UP!!!! Peg Biddy Santon wrote: Hi Peg! I shouldn't have posted yet another discouraging thing about my health. What do I know maybe this is a nightmare and I will wake up in the morning with nothing wrong with me!! If I do I will stay here with all of you and give you lots and lots of hope!! Another thing Peg, I now have no desire to put up with this any longer. I have given up on my docs and I want to be with my God NOW! I am not afraid, I just don't want any more stress on my husband and my family and friends. Don't feel sorry for me because I don't need that. All that I need is that all of you keep your hopes up and hopefully most of you will be in 's place soon! Hugs, Biddy -----Original Message----- From: Phil & Peggy Alfeld To: egroups <egroups> Date: Friday, October 15, 1999 9:05 PM Subject: Re: Phil & tx list Biddy, When will you qualify for medicare insurance? The chance of Phil being put on the list isn't over we're just not sure how UCLA will react but don't worry he's gone thorough all the preliminaries and if he gets sick again they will be able to quick put him on it. I just hope and pray that you can find doctors that will treat you as well as we've been treated and your symptoms are not in your mind they are exactly how the doctor and coordinator described them to us. Don't give up - just keep pushing. Peg Biddy Santon wrote: Peggy, I can't understand why he isn't on the list -- maybe they will put him on when you get to UCLA. Have everything crossed I can for you two! Here I go again, I feel so sorry for the families of people with this disease. You don't know exactly how to help -- really there is no help. It has got to be maddening for you. All we have to do is put up with this "devil disease" and we have, hopefully, family or friends that can or will help us. Oh how I ache for you and the other families! What are you talking about a detox place? I am so confused anymore that I can't remember anything. , my hubby, types most of my posts for me because they just do not make sense -- what else is new. I have never understood the status numbers -- my doctors have never even mentioned them in any way, so maybe it will be years before a tx. I can tell you now I will not put up with this stuff much longer. I want to get well and hopefully get back to work. I definitely have too much time on my hands and had a "pity party" today. Oh how I hate it when I get these, but I am so tired of the pain, nausea, the dizziness and all of this stuff. I know that I really, really take advantage of the young people on our list because when I do go into a "pity party" I think immediately of them and their parents. I can always be much, much worse. I hate to trash a doctor, but my doctor doesn't seem interested at all in my case. I guess it is because I have no insurance -- I have heard of this happening, but I thought I would never see it actually happen. I do hope they can sleep at night just because of money! I know I couldn't, but I have always been too soft and always given everything I can to those that were less fortunate than I was. Oh well, just another post that doesn't need to be sent. Take care of yourselves -- will be in your corner no matter what! Hugs, Biddy -----Original Message----- To: egroups <egroups> Date: Friday, October 15, 1999 6:12 PM Subject: Re: Phil & tx list Phil and I went to his liver doctor today. He said Phil's liver functions are in the normal range and his alkaline or phosphate levels were just slightly elevated and everything is looking good. Now we're a little concerned that due to the fact that he hasn't had an infecton in 6 months that they won't put him on the list. But he is still recommending him for listing and we will be meeting with the tx team at UCLA and it will be up to them. He said that a lot depends on their past experiences for example if they had a previous patient like Phil that reoccuring infections and then they had a long period of wellness, so they didn't list them and then the person got an infection and died (that's a bit drastic of an explanation) they might think more carefully about listing Phil. At this time I'm not even sure he has enough points and I am sure that if he has no more infections before seeing them that if he is listed it will probably be a status 7. The main thing would be that he could start accruing his time on the llsit. Then we met with Kaisers transplant coordinator who went into detail about the various things we should watch for as far as getting him to a hospital and letting her know so she can notate more points and such. Thanks to the group I understood what she was saying very well because of the discriptions you all have given in regard to the various symptoms. There was some information that we did get from her that we found very helpful. I don't think she's really studied Phil's history yet because she really didn't know about the problems he has had but hopefully she'll study it now and keep up with it. I sat there thinking when she was explaining each problem (oh, that's what must have happened with Jacquelyn's surgery, or has that, or Biddy had that etc.) I can't imagine what it would be like to go through this without the knowleged I've gained through the group. I think I would be overwhelmed and scared to death. Biddy, you asked what Phil's symptoms are: The main reason they would list Phil is that he had 4 reoccuring infections from 12/28/98-3/23/99. His other symptoms are the constricted bile duct that wouldn't allow the ERCP to be completed, and the fatigue and some brain fog. Now, some of the things that the coordinator talked about made me think of you. She said that when the liver gets cirrhosed fluid backs up into the abdomen and causes bloating and PAIN. She also talked about bleeding varacies in the digestive tract. Then the brain fog and disorientation - The can give you lactilose or something like that (maybe someone can correct me on what the drug is, she said it was a liquid) to help the brain fog and that if it got too bad they could hospitalize you and actually do a detox on you. Now when she was describing it I thought of you. It seems to me that you are in this situation. I seriously think you need more help than you are getting. I don't like it when someone critisizes the treatment of our doctors but it seems like the doctors you are seeing don't have a clue. Can't you go somewhere else? Aren't there any agencies that can help you with the finances? I feel so bad for you. We will be praying for you, wish we could do more. Well one of the guys from the field is making me get to work so I have to go. I might have a few more questions for Tim later. Peg Biddy Santon wrote: Hi Peggy! I hope Phil gets on the list -- seems like many on this site are getting a new liver -- what a blessing! My brain fog is getting so very bad, so I have my hubby, , typing this one. What were and are Phil's symptoms? I meant to ask Roy the same about , but forgot! Thanks! Hugs, Biddy -----Original Message----- To: egroups <egroups> Date: Thursday, October 14, 1999 7:03 PM Subject: Re: Vitiam B12 shotThe only answer we get is fatigue is part of the disease. We see the liver doctor and coordinator tomorrow and the social worker next Wed. hopefully this will result in Phil getting listed. Peg Vizas wrote: Patti....... Mike seemed to notice , within hours, that his energy level increased. He seems to feel that on the 12 or 13th day his energy level decreased. Did you find this to be so. Both of us have a bad cold so Mike's going in on Saturday to get another shot.By the way our primary care physican suggested that Mike pick up Chromium Picolate. I'm not certain what its use is, may be someone out there knows. As of yet no one at s Hopkins has sent Mike to a nuitritionist or suggested they he see someone about how to boost his energy level. What are you and others doing about this? Lynn -----Original Message----- To: egroups <egroups> Date: Sunday, October 10, 1999 8:07 PM Subject: Re: Vitiam B12 shotLynn, My husband Mike gets Vit. B-12 shots every two weeks and has been doing so for about 6 months now. He gets them from my family Dr. who is from England and believes in them. Apparently people with liver disease need extra It. B , it is supposed to very good for the liver and other functions as well. Mike finds that the day after he gets it he feels a bit draggy and then it really gives him a pick me up, he feels stronger after that. His specialist in Halifax agreed 100% that he get them and a nutrionist that I spoke with said they would be helpful as well. It may take awhile for him to feel the benefit from them. Patti Vizas wrote: Hello everyone.....A few weeks ago Mikes primary doctor gave him a B12 shot...It really made him feel so much better...energy wise. I really didn't like Mike doing that without talking to his liver doctor. Does anyone get these? Does anyone know how it affects the liver? Lynn ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Click Here! eGroups.com home: /group/ www. - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 You have to modify the dosage so that you take as much as you can without the laxative effect kicking in. This sounds strange but for the entire time was on Lactulose she had very few UC problems....she thinks it actually helped her UC although I'm not clear on how it helped, exactly. Thanks, Roy T. Re: Vitiam B12 shotLynn, > > > > > My husband Mike gets Vit. B-12 shots every two > > > > > weeks and has been doing so for about 6 months > > > > > now. He gets them from my family Dr. who is > > > > > from England and believes in them. Apparently > > > > > people with liver disease need extra It. B , it > > > > > is supposed to very good for the liver and other > > > > > functions as well. Mike finds that the day > > > > > after he gets it he feels a bit draggy and then > > > > > it really gives him a pick me up, he feels > > > > > stronger after that. His specialist in Halifax > > > > > agreed 100% that he get them and a nutrionist > > > > > that I spoke with said they would be helpful as > > > > > well. It may take awhile for him to feel the > > > > > benefit from them. > > > > > > > > > > Patti > > > > > > > > > > Vizas wrote: > > > > > > > > > > > Hello everyone.....A few weeks ago Mikes > > > > > > primary doctor gave him a B12 > > > > > > shot...It really made him feel so much > > > > > > better...energy wise. I really didn't > > > > > > like Mike doing that without talking to his > > > > > > liver doctor. Does anyone get > > > > > > these? Does anyone know how it affects the > > > > > > liver? > > > > > > Lynn > > > > > > > > > > > > ---- > > > > > > > > >------------------------------------------------------------------- > > > > > > > > > > > > eGroups.com home: > > > > > > /group/ > > > > > > - Simplifying group > > > > > > communications > > > > > > > > > > ------------------------------------------------- > > > > > [click here] > > > > > Click Here! > > > > > eGroups.com home: > > > > > /group/ > > > > > www. - Simplifying group > > > > > communications > > > > > > > > > > ----------------------------------------------------------- > > > > > [click here] > > > > > Click Here! > > > > > eGroups.com home: /group/ > > > > > > > > > > www. - Simplifying group communications > > > > > > > > > > > > ------------------------------------------------------------- > > > > [click here] > > > > Click Here! > > > > eGroups.com home: /group/ > > > > www. - Simplifying group communications > > > > > > > > ----------------------------------------------------------------------- > > > > [click here] > > > > Click Here! > > > > eGroups.com home: /group/ > > > > www. - Simplifying group communications > > > > > > > > > > > > > > >------------------------------------------------------------------------ > > > > > >eGroups.com home: /group/ > > > - Simplifying group communications > > > > > > > > > > > > > ______________________________________________________ > > > > ------------------------------------------------------------------------ > > > > eGroups.com home: /group/ > > - Simplifying group communications > > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 You have to modify the dosage so that you take as much as you can without the laxative effect kicking in. This sounds strange but for the entire time was on Lactulose she had very few UC problems....she thinks it actually helped her UC although I'm not clear on how it helped, exactly. Thanks, Roy T. Re: Vitiam B12 shotLynn, > > > > > My husband Mike gets Vit. B-12 shots every two > > > > > weeks and has been doing so for about 6 months > > > > > now. He gets them from my family Dr. who is > > > > > from England and believes in them. Apparently > > > > > people with liver disease need extra It. B , it > > > > > is supposed to very good for the liver and other > > > > > functions as well. Mike finds that the day > > > > > after he gets it he feels a bit draggy and then > > > > > it really gives him a pick me up, he feels > > > > > stronger after that. His specialist in Halifax > > > > > agreed 100% that he get them and a nutrionist > > > > > that I spoke with said they would be helpful as > > > > > well. It may take awhile for him to feel the > > > > > benefit from them. > > > > > > > > > > Patti > > > > > > > > > > Vizas wrote: > > > > > > > > > > > Hello everyone.....A few weeks ago Mikes > > > > > > primary doctor gave him a B12 > > > > > > shot...It really made him feel so much > > > > > > better...energy wise. I really didn't > > > > > > like Mike doing that without talking to his > > > > > > liver doctor. Does anyone get > > > > > > these? Does anyone know how it affects the > > > > > > liver? > > > > > > Lynn > > > > > > > > > > > > ---- > > > > > > > > >------------------------------------------------------------------- > > > > > > > > > > > > eGroups.com home: > > > > > > /group/ > > > > > > - Simplifying group > > > > > > communications > > > > > > > > > > ------------------------------------------------- > > > > > [click here] > > > > > Click Here! > > > > > eGroups.com home: > > > > > /group/ > > > > > www. - Simplifying group > > > > > communications > > > > > > > > > > ----------------------------------------------------------- > > > > > [click here] > > > > > Click Here! > > > > > eGroups.com home: /group/ > > > > > > > > > > www. - Simplifying group communications > > > > > > > > > > > > ------------------------------------------------------------- > > > > [click here] > > > > Click Here! > > > > eGroups.com home: /group/ > > > > www. - Simplifying group communications > > > > > > > > ----------------------------------------------------------------------- > > > > [click here] > > > > Click Here! > > > > eGroups.com home: /group/ > > > > www. - Simplifying group communications > > > > > > > > > > > > > > >------------------------------------------------------------------------ > > > > > >eGroups.com home: /group/ > > > - Simplifying group communications > > > > > > > > > > > > > ______________________________________________________ > > > > ------------------------------------------------------------------------ > > > > eGroups.com home: /group/ > > - Simplifying group communications > > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 Carol, The doctor said on Friday that Phil's bilirubin was normal, not sure what it was. It was high when he was admitted to the hospital the first time (when he was in there 10 days). I'm not sure what it was the other 3 times. I can't seem to get a handle on the LFT scores yet. I'm not sure if they go back and add up the previous scores or what. The main reason he wants to get him listed is because of the reoccuring infections at the begining of the year. But now he's indicating that UCLA might not list him because it's been 6 months almost 7 months since his last infection. Were glad that he is well but really want to get on the list so he serves his time and can be ready if he really needs a liver. We would rather he wait to get a liver until his quality of life gets worse on the hope that they will have done more research and can improve the quality of life after and the risk of other problems during and after surgery. Since Phil is type O blood he probably will have to wait a long time. Another criteria is size he's 5'7 " and 145 lbs. He might be able to have a split liver and his chances are better than being a large man. Were in a heavy populated area but UCLA does the most transplants in the country (that's good so the doctors have had a lot of practice). But it sounded like that since he is a O type he'd probably have to wait for 2-3 years once he got listed. That's why we want him on the list. She did indicate that the sickest get first choice - provided they are otherwise healthy and at this point we're doing great in that respect. She also indicated that the person had to have a caregiver - that's me and if the social worker we see on Wednesday doesn't think I'm to crazy to take care of him, I think we're okay in that area. I do worry a little because I do take antidepressants (mainly because we've been through stress you can't believe, this illness only a small part in the last 4 years) and because I'm going through menopause and refuse to take HRT. I also asked her if someone could will their liver to Phil. She said YES but they would have to have it on their donor card because they couldn't wait to get trough a will. I also asked how old the donor could be and I can't remember what she said, something about the condition I guess. I probably should have taken notes. She says she'll (the coordinator) will talk to us more each time we see the liver specialist. Fortunately, my work lets me go along. Phil just doesn't come up with as many questions and doesn't remember the answers. Sorry for rambling on so. Peg C Staples wrote: > Peg, I was wondering what Phil's bilirubin count is. When I asked my > doctor whenI could be considered for the transplant list, he said not > until my bili countwent up. Did anyone else get that as a > criteria? Carol > ----------------------------------------------------------------------- > [click here] > Click Here! > eGroups.com home: /group/ > www. - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 Carol, The doctor said on Friday that Phil's bilirubin was normal, not sure what it was. It was high when he was admitted to the hospital the first time (when he was in there 10 days). I'm not sure what it was the other 3 times. I can't seem to get a handle on the LFT scores yet. I'm not sure if they go back and add up the previous scores or what. The main reason he wants to get him listed is because of the reoccuring infections at the begining of the year. But now he's indicating that UCLA might not list him because it's been 6 months almost 7 months since his last infection. Were glad that he is well but really want to get on the list so he serves his time and can be ready if he really needs a liver. We would rather he wait to get a liver until his quality of life gets worse on the hope that they will have done more research and can improve the quality of life after and the risk of other problems during and after surgery. Since Phil is type O blood he probably will have to wait a long time. Another criteria is size he's 5'7 " and 145 lbs. He might be able to have a split liver and his chances are better than being a large man. Were in a heavy populated area but UCLA does the most transplants in the country (that's good so the doctors have had a lot of practice). But it sounded like that since he is a O type he'd probably have to wait for 2-3 years once he got listed. That's why we want him on the list. She did indicate that the sickest get first choice - provided they are otherwise healthy and at this point we're doing great in that respect. She also indicated that the person had to have a caregiver - that's me and if the social worker we see on Wednesday doesn't think I'm to crazy to take care of him, I think we're okay in that area. I do worry a little because I do take antidepressants (mainly because we've been through stress you can't believe, this illness only a small part in the last 4 years) and because I'm going through menopause and refuse to take HRT. I also asked her if someone could will their liver to Phil. She said YES but they would have to have it on their donor card because they couldn't wait to get trough a will. I also asked how old the donor could be and I can't remember what she said, something about the condition I guess. I probably should have taken notes. She says she'll (the coordinator) will talk to us more each time we see the liver specialist. Fortunately, my work lets me go along. Phil just doesn't come up with as many questions and doesn't remember the answers. Sorry for rambling on so. Peg C Staples wrote: > Peg, I was wondering what Phil's bilirubin count is. When I asked my > doctor whenI could be considered for the transplant list, he said not > until my bili countwent up. Did anyone else get that as a > criteria? Carol > ----------------------------------------------------------------------- > [click here] > Click Here! > eGroups.com home: /group/ > www. - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 Peg I always went with to her doctor appointments for the same reason. She usually did not remember clearly what the doctor said. Phil's size is a little below average for men but not for women. The donor can be a man or woman, it doesn't matter. I think they take donors of almost any age as long as their liver is in good shape. If people don't abuse their liver and don't have liver disease, the liver can probably outlive most people. Having someone will their liver to a specific person sometimes happens but it is extremely rare. They would have to die in a certain set of circumstances (usually an accident) and have the right blood type and size. The living-donor technology is coming along but is still considered somewhat risky right now. Of course the transplant is always risky to the recipient but the living donor is also at some risk. If UCLA does split livers then that probably does slightly help his chances of getting a liver after he is listed. Usually an infant gets the smaller piece and an adult gets the larger piece. I think UCLA has a really good program. They publish a lot of research literature. Thanks Roy T. Re: Phil & tx list > Carol, > The doctor said on Friday that Phil's bilirubin was normal, not sure > what it was. It was high when he was admitted to the hospital the first > time (when he was in there 10 days). I'm not sure what it was the other > 3 times. I can't seem to get a handle on the LFT scores yet. I'm not > sure if they go back and add up the previous scores or what. The main > reason he wants to get him listed is because of the reoccuring > infections at the begining of the year. But now he's indicating that > UCLA might not list him because it's been 6 months almost 7 months since > his last infection. Were glad that he is well but really want to get on > the list so he serves his time and can be ready if he really needs a > liver. We would rather he wait to get a liver until his quality of life > gets worse on the hope that they will have done more research and can > improve the quality of life after and the risk of other problems during > and after surgery. > > Since Phil is type O blood he probably will have to wait a long time. > Another criteria is size he's 5'7 " and 145 lbs. He might be able to > have a split liver and his chances are better than being a large man. > Were in a heavy populated area but UCLA does the most transplants in the > country (that's good so the doctors have had a lot of practice). But it > sounded like that since he is a O type he'd probably have to wait for > 2-3 years once he got listed. That's why we want him on the list. She > did indicate that the sickest get first choice - provided they are > otherwise healthy and at this point we're doing great in that respect. > She also indicated that the person had to have a caregiver - that's me > and if the social worker we see on Wednesday doesn't think I'm to crazy > to take care of him, I think we're okay in that area. I do worry a > little because I do take antidepressants (mainly because we've been > through stress you can't believe, this illness only a small part in the > last 4 years) and because I'm going through menopause and refuse to take > HRT. > > I also asked her if someone could will their liver to Phil. She said > YES but they would have to have it on their donor card because they > couldn't wait to get trough a will. I also asked how old the donor > could be and I can't remember what she said, something about the > condition I guess. I probably should have taken notes. She says she'll > (the coordinator) will talk to us more each time we see the liver > specialist. Fortunately, my work lets me go along. Phil just doesn't > come up with as many questions and doesn't remember the answers. > > Sorry for rambling on so. > > Peg > > > > > > C Staples wrote: > > > Peg, I was wondering what Phil's bilirubin count is. When I asked my > > doctor whenI could be considered for the transplant list, he said not > > until my bili countwent up. Did anyone else get that as a > > criteria? Carol > > ----------------------------------------------------------------------- > > [click here] > > Click Here! > > eGroups.com home: /group/ > > www. - Simplifying group communications > > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 Peg I always went with to her doctor appointments for the same reason. She usually did not remember clearly what the doctor said. Phil's size is a little below average for men but not for women. The donor can be a man or woman, it doesn't matter. I think they take donors of almost any age as long as their liver is in good shape. If people don't abuse their liver and don't have liver disease, the liver can probably outlive most people. Having someone will their liver to a specific person sometimes happens but it is extremely rare. They would have to die in a certain set of circumstances (usually an accident) and have the right blood type and size. The living-donor technology is coming along but is still considered somewhat risky right now. Of course the transplant is always risky to the recipient but the living donor is also at some risk. If UCLA does split livers then that probably does slightly help his chances of getting a liver after he is listed. Usually an infant gets the smaller piece and an adult gets the larger piece. I think UCLA has a really good program. They publish a lot of research literature. Thanks Roy T. Re: Phil & tx list > Carol, > The doctor said on Friday that Phil's bilirubin was normal, not sure > what it was. It was high when he was admitted to the hospital the first > time (when he was in there 10 days). I'm not sure what it was the other > 3 times. I can't seem to get a handle on the LFT scores yet. I'm not > sure if they go back and add up the previous scores or what. The main > reason he wants to get him listed is because of the reoccuring > infections at the begining of the year. But now he's indicating that > UCLA might not list him because it's been 6 months almost 7 months since > his last infection. Were glad that he is well but really want to get on > the list so he serves his time and can be ready if he really needs a > liver. We would rather he wait to get a liver until his quality of life > gets worse on the hope that they will have done more research and can > improve the quality of life after and the risk of other problems during > and after surgery. > > Since Phil is type O blood he probably will have to wait a long time. > Another criteria is size he's 5'7 " and 145 lbs. He might be able to > have a split liver and his chances are better than being a large man. > Were in a heavy populated area but UCLA does the most transplants in the > country (that's good so the doctors have had a lot of practice). But it > sounded like that since he is a O type he'd probably have to wait for > 2-3 years once he got listed. That's why we want him on the list. She > did indicate that the sickest get first choice - provided they are > otherwise healthy and at this point we're doing great in that respect. > She also indicated that the person had to have a caregiver - that's me > and if the social worker we see on Wednesday doesn't think I'm to crazy > to take care of him, I think we're okay in that area. I do worry a > little because I do take antidepressants (mainly because we've been > through stress you can't believe, this illness only a small part in the > last 4 years) and because I'm going through menopause and refuse to take > HRT. > > I also asked her if someone could will their liver to Phil. She said > YES but they would have to have it on their donor card because they > couldn't wait to get trough a will. I also asked how old the donor > could be and I can't remember what she said, something about the > condition I guess. I probably should have taken notes. She says she'll > (the coordinator) will talk to us more each time we see the liver > specialist. Fortunately, my work lets me go along. Phil just doesn't > come up with as many questions and doesn't remember the answers. > > Sorry for rambling on so. > > Peg > > > > > > C Staples wrote: > > > Peg, I was wondering what Phil's bilirubin count is. When I asked my > > doctor whenI could be considered for the transplant list, he said not > > until my bili countwent up. Did anyone else get that as a > > criteria? Carol > > ----------------------------------------------------------------------- > > [click here] > > Click Here! > > eGroups.com home: /group/ > > www. - Simplifying group communications > > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 Peg I always went with to her doctor appointments for the same reason. She usually did not remember clearly what the doctor said. Phil's size is a little below average for men but not for women. The donor can be a man or woman, it doesn't matter. I think they take donors of almost any age as long as their liver is in good shape. If people don't abuse their liver and don't have liver disease, the liver can probably outlive most people. Having someone will their liver to a specific person sometimes happens but it is extremely rare. They would have to die in a certain set of circumstances (usually an accident) and have the right blood type and size. The living-donor technology is coming along but is still considered somewhat risky right now. Of course the transplant is always risky to the recipient but the living donor is also at some risk. If UCLA does split livers then that probably does slightly help his chances of getting a liver after he is listed. Usually an infant gets the smaller piece and an adult gets the larger piece. I think UCLA has a really good program. They publish a lot of research literature. Thanks Roy T. Re: Phil & tx list > Carol, > The doctor said on Friday that Phil's bilirubin was normal, not sure > what it was. It was high when he was admitted to the hospital the first > time (when he was in there 10 days). I'm not sure what it was the other > 3 times. I can't seem to get a handle on the LFT scores yet. I'm not > sure if they go back and add up the previous scores or what. The main > reason he wants to get him listed is because of the reoccuring > infections at the begining of the year. But now he's indicating that > UCLA might not list him because it's been 6 months almost 7 months since > his last infection. Were glad that he is well but really want to get on > the list so he serves his time and can be ready if he really needs a > liver. We would rather he wait to get a liver until his quality of life > gets worse on the hope that they will have done more research and can > improve the quality of life after and the risk of other problems during > and after surgery. > > Since Phil is type O blood he probably will have to wait a long time. > Another criteria is size he's 5'7 " and 145 lbs. He might be able to > have a split liver and his chances are better than being a large man. > Were in a heavy populated area but UCLA does the most transplants in the > country (that's good so the doctors have had a lot of practice). But it > sounded like that since he is a O type he'd probably have to wait for > 2-3 years once he got listed. That's why we want him on the list. She > did indicate that the sickest get first choice - provided they are > otherwise healthy and at this point we're doing great in that respect. > She also indicated that the person had to have a caregiver - that's me > and if the social worker we see on Wednesday doesn't think I'm to crazy > to take care of him, I think we're okay in that area. I do worry a > little because I do take antidepressants (mainly because we've been > through stress you can't believe, this illness only a small part in the > last 4 years) and because I'm going through menopause and refuse to take > HRT. > > I also asked her if someone could will their liver to Phil. She said > YES but they would have to have it on their donor card because they > couldn't wait to get trough a will. I also asked how old the donor > could be and I can't remember what she said, something about the > condition I guess. I probably should have taken notes. She says she'll > (the coordinator) will talk to us more each time we see the liver > specialist. Fortunately, my work lets me go along. Phil just doesn't > come up with as many questions and doesn't remember the answers. > > Sorry for rambling on so. > > Peg > > > > > > C Staples wrote: > > > Peg, I was wondering what Phil's bilirubin count is. When I asked my > > doctor whenI could be considered for the transplant list, he said not > > until my bili countwent up. Did anyone else get that as a > > criteria? Carol > > ----------------------------------------------------------------------- > > [click here] > > Click Here! > > eGroups.com home: /group/ > > www. - Simplifying group communications > > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Peg, You should request copies of all of Phil's bloodwork. Then you can see what the normal ranges are and just what has gone up or down since the last one. You can also research each one on the internet to see just what it is and how it relates to PSC and UC. I have been getting copies of mine for over 15 years. The doctors don't usually give you the numbers unless you ask specifically and I like to know exactly what mine are. The normal range for total bilirubin is 0.2-1.4. And mine has always stayed within that range. If I'm not mistaken, I believe that encephalopathy is " brain fog " . UCLA looked pretty good on the transplant success list. There pct alive after one year was very good. I guess that could mean that they do a better job of treating patients on the list or, they may just list their patients earlier when they are healthier. That list seems to contain so many variables. Carol Re: Phil & tx list > Carol, > The doctor said on Friday that Phil's bilirubin was normal, not sure > what it was. It was high when he was admitted to the hospital the first > time (when he was in there 10 days). I'm not sure what it was the other > 3 times. I can't seem to get a handle on the LFT scores yet. I'm not > sure if they go back and add up the previous scores or what. The main > reason he wants to get him listed is because of the reoccuring > infections at the begining of the year. But now he's indicating that > UCLA might not list him because it's been 6 months almost 7 months since > his last infection. Were glad that he is well but really want to get on > the list so he serves his time and can be ready if he really needs a > liver. We would rather he wait to get a liver until his quality of life > gets worse on the hope that they will have done more research and can > improve the quality of life after and the risk of other problems during > and after surgery. > > Since Phil is type O blood he probably will have to wait a long time. > Another criteria is size he's 5'7 " and 145 lbs. He might be able to > have a split liver and his chances are better than being a large man. > Were in a heavy populated area but UCLA does the most transplants in the > country (that's good so the doctors have had a lot of practice). But it > sounded like that since he is a O type he'd probably have to wait for > 2-3 years once he got listed. That's why we want him on the list. She > did indicate that the sickest get first choice - provided they are > otherwise healthy and at this point we're doing great in that respect. > She also indicated that the person had to have a caregiver - that's me > and if the social worker we see on Wednesday doesn't think I'm to crazy > to take care of him, I think we're okay in that area. I do worry a > little because I do take antidepressants (mainly because we've been > through stress you can't believe, this illness only a small part in the > last 4 years) and because I'm going through menopause and refuse to take > HRT. > > I also asked her if someone could will their liver to Phil. She said > YES but they would have to have it on their donor card because they > couldn't wait to get trough a will. I also asked how old the donor > could be and I can't remember what she said, something about the > condition I guess. I probably should have taken notes. She says she'll > (the coordinator) will talk to us more each time we see the liver > specialist. Fortunately, my work lets me go along. Phil just doesn't > come up with as many questions and doesn't remember the answers. > > Sorry for rambling on so. > > Peg > > > > > > C Staples wrote: > > > Peg, I was wondering what Phil's bilirubin count is. When I asked my > > doctor whenI could be considered for the transplant list, he said not > > until my bili countwent up. Did anyone else get that as a > > criteria? Carol > > ----------------------------------------------------------------------- > > [click here] > > Click Here! > > eGroups.com home: /group/ > > www. - Simplifying group communications > > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Yes Carol, Your guess about UCLA's low death rate is true. They list healthier patients and aren't quit as fussy about the liver being absolutly perfect before transplanting it. Oh another thing we learned that just popped into my head was that if a liver tested with hep C, they will use it for a hep C patient if it is good because they will give a healthy liver the hep C when they get a transplant. They won't give a hep C liver to someone without Hep C, ie: PSC patients. And if they are Kaiser patients, they take good care of them, like they are taking good care of Phil. Peg C Staples wrote: > Peg, > > You should request copies of all of Phil's bloodwork. > Then you can see what the normal ranges are and > just what has gone up or down since the last one. You > can also research each one on the internet to see just > what it is and how it relates to PSC and UC. I have > been getting copies of mine for over 15 years. The > doctors don't usually give you the numbers unless you > ask specifically and I like to know exactly what mine are. > > The normal range for total bilirubin is 0.2-1.4. And mine > has always stayed within that range. If I'm not mistaken, > I believe that encephalopathy is " brain fog " . > > UCLA looked pretty good on the transplant success > list. There pct alive after one year was very good. I > guess that could mean that they do a better job of > treating patients on the list or, they may just list their > patients earlier when they are healthier. That list > seems to contain so many variables. > > Carol > > Re: Phil & tx list > > > Carol, > > The doctor said on Friday that Phil's bilirubin was normal, not sure > > what it was. It was high when he was admitted to the hospital the first > > time (when he was in there 10 days). I'm not sure what it was the other > > 3 times. I can't seem to get a handle on the LFT scores yet. I'm not > > sure if they go back and add up the previous scores or what. The main > > reason he wants to get him listed is because of the reoccuring > > infections at the begining of the year. But now he's indicating that > > UCLA might not list him because it's been 6 months almost 7 months since > > his last infection. Were glad that he is well but really want to get on > > the list so he serves his time and can be ready if he really needs a > > liver. We would rather he wait to get a liver until his quality of life > > gets worse on the hope that they will have done more research and can > > improve the quality of life after and the risk of other problems during > > and after surgery. > > > > Since Phil is type O blood he probably will have to wait a long time. > > Another criteria is size he's 5'7 " and 145 lbs. He might be able to > > have a split liver and his chances are better than being a large man. > > Were in a heavy populated area but UCLA does the most transplants in the > > country (that's good so the doctors have had a lot of practice). But it > > sounded like that since he is a O type he'd probably have to wait for > > 2-3 years once he got listed. That's why we want him on the list. She > > did indicate that the sickest get first choice - provided they are > > otherwise healthy and at this point we're doing great in that respect. > > She also indicated that the person had to have a caregiver - that's me > > and if the social worker we see on Wednesday doesn't think I'm to crazy > > to take care of him, I think we're okay in that area. I do worry a > > little because I do take antidepressants (mainly because we've been > > through stress you can't believe, this illness only a small part in the > > last 4 years) and because I'm going through menopause and refuse to take > > HRT. > > > > I also asked her if someone could will their liver to Phil. She said > > YES but they would have to have it on their donor card because they > > couldn't wait to get trough a will. I also asked how old the donor > > could be and I can't remember what she said, something about the > > condition I guess. I probably should have taken notes. She says she'll > > (the coordinator) will talk to us more each time we see the liver > > specialist. Fortunately, my work lets me go along. Phil just doesn't > > come up with as many questions and doesn't remember the answers. > > > > Sorry for rambling on so. > > > > Peg > > > > > > > > > > > > C Staples wrote: > > > > > Peg, I was wondering what Phil's bilirubin count is. When I asked my > > > doctor whenI could be considered for the transplant list, he said not > > > until my bili countwent up. Did anyone else get that as a > > > criteria? Carol > > > ----------------------------------------------------------------------- > > > [click here] > > > Click Here! > > > eGroups.com home: /group/ > > > www. - Simplifying group communications > > > > > > ------------------------------------------------------------------------ > > > > eGroups.com home: /group/ > > - Simplifying group communications > > > > > > > > > > > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Yes Carol, Your guess about UCLA's low death rate is true. They list healthier patients and aren't quit as fussy about the liver being absolutly perfect before transplanting it. Oh another thing we learned that just popped into my head was that if a liver tested with hep C, they will use it for a hep C patient if it is good because they will give a healthy liver the hep C when they get a transplant. They won't give a hep C liver to someone without Hep C, ie: PSC patients. And if they are Kaiser patients, they take good care of them, like they are taking good care of Phil. Peg C Staples wrote: > Peg, > > You should request copies of all of Phil's bloodwork. > Then you can see what the normal ranges are and > just what has gone up or down since the last one. You > can also research each one on the internet to see just > what it is and how it relates to PSC and UC. I have > been getting copies of mine for over 15 years. The > doctors don't usually give you the numbers unless you > ask specifically and I like to know exactly what mine are. > > The normal range for total bilirubin is 0.2-1.4. And mine > has always stayed within that range. If I'm not mistaken, > I believe that encephalopathy is " brain fog " . > > UCLA looked pretty good on the transplant success > list. There pct alive after one year was very good. I > guess that could mean that they do a better job of > treating patients on the list or, they may just list their > patients earlier when they are healthier. That list > seems to contain so many variables. > > Carol > > Re: Phil & tx list > > > Carol, > > The doctor said on Friday that Phil's bilirubin was normal, not sure > > what it was. It was high when he was admitted to the hospital the first > > time (when he was in there 10 days). I'm not sure what it was the other > > 3 times. I can't seem to get a handle on the LFT scores yet. I'm not > > sure if they go back and add up the previous scores or what. The main > > reason he wants to get him listed is because of the reoccuring > > infections at the begining of the year. But now he's indicating that > > UCLA might not list him because it's been 6 months almost 7 months since > > his last infection. Were glad that he is well but really want to get on > > the list so he serves his time and can be ready if he really needs a > > liver. We would rather he wait to get a liver until his quality of life > > gets worse on the hope that they will have done more research and can > > improve the quality of life after and the risk of other problems during > > and after surgery. > > > > Since Phil is type O blood he probably will have to wait a long time. > > Another criteria is size he's 5'7 " and 145 lbs. He might be able to > > have a split liver and his chances are better than being a large man. > > Were in a heavy populated area but UCLA does the most transplants in the > > country (that's good so the doctors have had a lot of practice). But it > > sounded like that since he is a O type he'd probably have to wait for > > 2-3 years once he got listed. That's why we want him on the list. She > > did indicate that the sickest get first choice - provided they are > > otherwise healthy and at this point we're doing great in that respect. > > She also indicated that the person had to have a caregiver - that's me > > and if the social worker we see on Wednesday doesn't think I'm to crazy > > to take care of him, I think we're okay in that area. I do worry a > > little because I do take antidepressants (mainly because we've been > > through stress you can't believe, this illness only a small part in the > > last 4 years) and because I'm going through menopause and refuse to take > > HRT. > > > > I also asked her if someone could will their liver to Phil. She said > > YES but they would have to have it on their donor card because they > > couldn't wait to get trough a will. I also asked how old the donor > > could be and I can't remember what she said, something about the > > condition I guess. I probably should have taken notes. She says she'll > > (the coordinator) will talk to us more each time we see the liver > > specialist. Fortunately, my work lets me go along. Phil just doesn't > > come up with as many questions and doesn't remember the answers. > > > > Sorry for rambling on so. > > > > Peg > > > > > > > > > > > > C Staples wrote: > > > > > Peg, I was wondering what Phil's bilirubin count is. When I asked my > > > doctor whenI could be considered for the transplant list, he said not > > > until my bili countwent up. Did anyone else get that as a > > > criteria? Carol > > > ----------------------------------------------------------------------- > > > [click here] > > > Click Here! > > > eGroups.com home: /group/ > > > www. - Simplifying group communications > > > > > > ------------------------------------------------------------------------ > > > > eGroups.com home: /group/ > > - Simplifying group communications > > > > > > > > > > > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Peg - Forgive me for asking, since probably eveyone in the group knows this already - what does body size have to do with getting a liver transplant. I had heard mention of this somewhere but didn't get the reason. Thanks Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Peg - Forgive me for asking, since probably eveyone in the group knows this already - what does body size have to do with getting a liver transplant. I had heard mention of this somewhere but didn't get the reason. Thanks Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Peg - Forgive me for asking, since probably eveyone in the group knows this already - what does body size have to do with getting a liver transplant. I had heard mention of this somewhere but didn't get the reason. Thanks Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Dawn I'm not sure but my guess would be so that it fits the duct work and stuff. I just know that is a major criteria. I'm sure some of our men and probably women could give you a better answer. Peg DScala1193@... wrote: > Peg - > > Forgive me for asking, since probably eveyone in the group knows this already > - what does body size have to do with getting a liver transplant. I had > heard mention of this somewhere but didn't get the reason. > > Thanks > Dawn > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Dawn I'm not sure but my guess would be so that it fits the duct work and stuff. I just know that is a major criteria. I'm sure some of our men and probably women could give you a better answer. Peg DScala1193@... wrote: > Peg - > > Forgive me for asking, since probably eveyone in the group knows this already > - what does body size have to do with getting a liver transplant. I had > heard mention of this somewhere but didn't get the reason. > > Thanks > Dawn > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Dawn I'm not sure but my guess would be so that it fits the duct work and stuff. I just know that is a major criteria. I'm sure some of our men and probably women could give you a better answer. Peg DScala1193@... wrote: > Peg - > > Forgive me for asking, since probably eveyone in the group knows this already > - what does body size have to do with getting a liver transplant. I had > heard mention of this somewhere but didn't get the reason. > > Thanks > Dawn > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 The size of the liver is of concern when it is too big to fit into the abdominal cavity. Children and small women may not be able to take a whole liver, especially from a large donor. Split livers have been used in children for years. Living donor transplants are essentially split liver transplants performed on the living donor. For children the smaller lobe is transplanted, for adults the larger lobe is transplanted. This put donors for adult transplants at greater risk. Both donor and recipient livers grow during the next few months to full size. Tim ltx 4/4/98 --- DScala1193@... wrote: > Peg - > > Forgive me for asking, since probably eveyone in the group > knows this already > - what does body size have to do with getting a liver > transplant. I had > heard mention of this somewhere but didn't get the reason. > > Thanks > Dawn > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications > > > > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 The size of the liver is of concern when it is too big to fit into the abdominal cavity. Children and small women may not be able to take a whole liver, especially from a large donor. Split livers have been used in children for years. Living donor transplants are essentially split liver transplants performed on the living donor. For children the smaller lobe is transplanted, for adults the larger lobe is transplanted. This put donors for adult transplants at greater risk. Both donor and recipient livers grow during the next few months to full size. Tim ltx 4/4/98 --- DScala1193@... wrote: > Peg - > > Forgive me for asking, since probably eveyone in the group > knows this already > - what does body size have to do with getting a liver > transplant. I had > heard mention of this somewhere but didn't get the reason. > > Thanks > Dawn > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications > > > > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 The size of the liver is of concern when it is too big to fit into the abdominal cavity. Children and small women may not be able to take a whole liver, especially from a large donor. Split livers have been used in children for years. Living donor transplants are essentially split liver transplants performed on the living donor. For children the smaller lobe is transplanted, for adults the larger lobe is transplanted. This put donors for adult transplants at greater risk. Both donor and recipient livers grow during the next few months to full size. Tim ltx 4/4/98 --- DScala1193@... wrote: > Peg - > > Forgive me for asking, since probably eveyone in the group > knows this already > - what does body size have to do with getting a liver > transplant. I had > heard mention of this somewhere but didn't get the reason. > > Thanks > Dawn > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications > > > > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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