Guest guest Posted August 2, 2003 Report Share Posted August 2, 2003 Dear Patty, It is hard to know what to do, especially if it has been especially warm and your body needs more fluid even though I was told to watch my fluid intake. Are you on potassium? That may be what's in quinine that works, I don't know. But they put me on potassium and suggested high potassium foods, such as oranges, apricots, etc. to help avoid the low potassium from excess fluid loss which apparently can cause cramping. Does the liver transplant clinic have someone on call? This close to transplant, you don't need things to go haywire!!!! Take care. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2003 Report Share Posted August 4, 2003 Amy....in reference to your question to Patty on transplant centers having someone to call.... Are you not listed yet? If you are on the list you should've been assigned a transplant " team " which will include a transplant coordinator (or more than one) A co-ordinator is on call 24 hours a day. Other members of the team will include the Hep., the head surgeon, the anisthesiologist, a pyschologistand/or a social worker, an RN (who is probably the Tx coordinator) andother staff (who am I forgetting Cheryl, Patty?) Perhaps I'm confused with your situation...what Tx center are you associated with? love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2010 Report Share Posted January 23, 2010 Lottie my docs solution for PL was to do a tap, I had this done 3 times, they took out 8.5 500ltr bottles I had pneumonia with it.. all caused by dasasinib ... so they put me back on nilotinib (I failed that to) I wonder why they did not try lasix on me??? the tap was painless and I healed up in a matter of weeks Skip DX 32++ years ago ________________________________ From: Lottie Duthu <lotajam@...> CML < > Sent: Fri, January 22, 2010 6:40:11 PM Subject: [ ] Lasix  Dear , I have found that different doctors handle the pleural effusions in different ways. When I was on Sprycel, they just took me off, because I also had pericardial effusions as well and pneumonia. Some doctors want you to take Lasix, but mine doesn't advise taking it, even though my local internist wants me on it. I am torn between the two, but I stick with my oncologist who does research and publishes a lot of papers in journals. I am another trial and have had pleural effusions for several months. My pulmonologist is not doing any follow ups, so I am thinking of going back to Ochsner in New Orleans. Hearts & hands, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Dear Skip, My pulmonologist talked about doing a thorocentesis, but he never followed up on it and neither did he call back to tell me about the xray; my internist had to call the hospital to get the results and it turns out I still have the pleural effusion. I am very upset with him now anyway because he refuses to treat my son who has TB. I think he is getting personal here. He told me he was interested in seeing my son, so he made an appointment to see him and he never called him back to follow up. My son made another appointment to find out the results of his tests and he said he couldn't treat him. So that is the closest I ever got to having a thorocentesis. I think Bobby might have a different opinion about whether she was comfortable with it. In your case, you are doing better without the meds at this point in time. Hands & hearts, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Hi Lottie Is a thorocenteses where they stick a needle in your lung and draw out fluid? If so I had one done two years ago after being on Sprycel for three years. They took about a qt of liquid out of my lungs. That is when they switched me to Tasigna. And after I had that done I still had high blood pressure for about three weeks and a fever. He attributed it to PE. He said a little bit of fluid was probably still in my lungs. But I have never had it since. Sharon _____ From: [mailto: ] On Behalf Of Lottie Duthu Sent: Saturday, January 23, 2010 9:10 PM CML Subject: [ ] Lasix Dear Skip, My pulmonologist talked about doing a thorocentesis, but he never followed up on it and neither did he call back to tell me about the xray; my internist had to call the hospital to get the results and it turns out I still have the pleural effusion. I am very upset with him now anyway because he refuses to treat my son who has TB. I think he is getting personal here. He told me he was interested in seeing my son, so he made an appointment to see him and he never called him back to follow up. My son made another appointment to find out the results of his tests and he said he couldn't treat him. So that is the closest I ever got to having a thorocentesis. I think Bobby might have a different opinion about whether she was comfortable with it. In your case, you are doing better without the meds at this point in time. Hands & hearts, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Lottie and Sharon, I had shortness of breath, fever and was fairly ill, they did X-Ray and showed me my chest. the PE was  evident, it was all around the lung, you could not see the lung just a white area where the lung should be. I had none around the left lung it was normal  But the tap was the correct way to go . In just over two months they took out 8.5 bottles. I never had a problem, they watched me close for infection gave me antibotics and sent me home. The hem doc showed me the Dasatinib write up and shure enough the rate of patients that were on Dasatinib that got PE was 30%, I still have small bit at the bottom of the lung which cause no trouble so the leave it along. Skip  ________________________________ From: Sharon Teichera <onthewtr@...> Sent: Sun, January 24, 2010 1:20:28 AM Subject: RE: [ ] Lasix  Hi Lottie Is a thorocenteses where they stick a needle in your lung and draw out fluid? If so I had one done two years ago after being on Sprycel for three years. They took about a qt of liquid out of my lungs. That is when they switched me to Tasigna. And after I had that done I still had high blood pressure for about three weeks and a fever. He attributed it to PE. He said a little bit of fluid was probably still in my lungs. But I have never had it since. Sharon _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Lottie Duthu Sent: Saturday, January 23, 2010 9:10 PM CML Subject: [ ] Lasix Dear Skip, My pulmonologist talked about doing a thorocentesis, but he never followed up on it and neither did he call back to tell me about the xray; my internist had to call the hospital to get the results and it turns out I still have the pleural effusion. I am very upset with him now anyway because he refuses to treat my son who has TB. I think he is getting personal here. He told me he was interested in seeing my son, so he made an appointment to see him and he never called him back to follow up. My son made another appointment to find out the results of his tests and he said he couldn't treat him. So that is the closest I ever got to having a thorocentesis. I think Bobby might have a different opinion about whether she was comfortable with it. In your case, you are doing better without the meds at this point in time. Hands & hearts, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 All I know is they stuck a needle in my back and I could see it all on a little tv. It was awful for me and it hurt like heck!!!! But thank God I have not had to have another done. S _____ From: [mailto: ] On Behalf Of Skip Duffie Sent: Sunday, January 24, 2010 7:25 AM Subject: Re: [ ] Lasix Lottie and Sharon, I had shortness of breath, fever and was fairly ill, they did X-Ray and showed me my chest. the PE was evident, it was all around the lung, you could not see the lung just a white area where the lung should be. I had none around the left lung it was normal But the tap was the correct way to go . In just over two months they took out 8.5 bottles. I never had a problem, they watched me close for infection gave me antibotics and sent me home. The hem doc showed me the Dasatinib write up and shure enough the rate of patients that were on Dasatinib that got PE was 30%, I still have small bit at the bottom of the lung which cause no trouble so the leave it along. Skip ________________________________ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net> net> groups (DOT) <mailto:%40> com Sent: Sun, January 24, 2010 1:20:28 AM Subject: RE: [ ] Lasix Hi Lottie Is a thorocenteses where they stick a needle in your lung and draw out fluid? If so I had one done two years ago after being on Sprycel for three years. They took about a qt of liquid out of my lungs. That is when they switched me to Tasigna. And after I had that done I still had high blood pressure for about three weeks and a fever. He attributed it to PE. He said a little bit of fluid was probably still in my lungs. But I have never had it since. Sharon _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Lottie Duthu Sent: Saturday, January 23, 2010 9:10 PM CML Subject: [ ] Lasix Dear Skip, My pulmonologist talked about doing a thorocentesis, but he never followed up on it and neither did he call back to tell me about the xray; my internist had to call the hospital to get the results and it turns out I still have the pleural effusion. I am very upset with him now anyway because he refuses to treat my son who has TB. I think he is getting personal here. He told me he was interested in seeing my son, so he made an appointment to see him and he never called him back to follow up. My son made another appointment to find out the results of his tests and he said he couldn't treat him. So that is the closest I ever got to having a thorocentesis. I think Bobby might have a different opinion about whether she was comfortable with it. In your case, you are doing better without the meds at this point in time. Hands & hearts, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
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