Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Debby: What's the diference in being " in the system " and on the list, if any? Clara: I've not heard of an age limit. May I ask yours? I know that my neighbor is being sent to see a Hepatoligist to see if whe is a good candidate and she's quite a bit older than me. I forget when her appt.is but it should be coming up. If it wasn't so darn hot, I'd be outside talking to her. When I find something out, I'll let you know. You may get your answer before then. Clara Shelton <cshelton33@...> wrote: Debby Wrote: Anyway, as I started above, my GI wants me to be in the transplant " system " so that when and IF I truly need it, I will be able to get on the list ASAP. Debby and others: Is There an age limit for liver transplant? You seem to know about the timing, as you said your GI had discussed it. My doctor has not mentioned transplant at all. But then he does not like to guess and tell me ahead of time. Right now he thinks I am getting better. Maybe regenerating the liver?? or at least the part that is not cirrhotic is getting better? I do not quite understand! Clara from Or Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 Hi , Not personally, but read this: Liver Transplants Safe, Successful in Otherwise Healthy HIV Patients http://www.thebody.com/content/art14909.html Bob From: [mailto: ] On Behalf Of martin.murray55 Sent: Monday, August 10, 2009 11:43 PM Subject: liver transplant I received news today that I have liver cancer. Tomorrow I will start the process at UCSF for a liver transplant. Has anyone with HIV/Aids had a liver transplane? I would love to talk to you about your experience. Thanks guys. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2009 Report Share Posted August 12, 2009 I was at a national liver meeting several years ago, and Dr. Misha Cohen, of UCSF presented information of healing liver cancer in a Hep C patient. I think she was starting a clinical trial then too. She used nutrition, plus Traditional Chinese Medicine and other modalities. Charlie Smigelski, RD Boston In a message dated 8/11/09 4:49:35 PM, martin.murray55@... writes: I received news today that I have liver cancer. Tomorrow I will start the process at UCSF for a liver transplant. Has anyone with HIV/Aids had a liver transplane? I would love to talk to you about your experience. Thanks guys. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2010 Report Share Posted December 11, 2010 Hello, Dottie & Dennis and Welcome! You're asking the right questions here, and there are many on this site that can help answer most of your questions. I had a transplant in Sept, 2008, and am one of the few in this group to have gone through it. A great woman named Penney also had a tp, several months before me. O.K. Meld score is the measurement used by UNOS (United Network for Organ Sharing) to indicate the severity of one's End Stage Liver Disease. If you Google Unos & Meld score liver transplant, you'll find lots of great sites. Try to find the best liver transplant hospital's site in your state and read all that they have. Basically, with a MELD score of 22, Dennis is typically acceptable to be put on the transplant list, though some states seem to use different numbers due to the overload of patients versus donor organs available. I have heard (only rumor, though) that in NY, you may need a MELD score of 30, which is higher than the " critical " level of 25. When the MELD is 19-24, Dennis should be having monthly blood tests, and if it gets to 25, then weekly blood work. You should make sure your Doctor writes on the prescription for the blood work that all results are to be faxed or mailed to you, and you should save all records yourself. With the blood test results, you can determine the MELD score by going here: http://www.mayoclinic.org/meld/mayomodel6.html Now, with a 22 MELD, I would be very concerned. Without trying to scare you both, what I mean is that you have to be VERY proactive with both your GI or Hematologist Doctor and with the best nearby liver transplant facility you can find. Google will help you find the best hospitals available. I live in Florida where the wait time for transplant is usually less than the New England states, so it varies as I said. My MELD score went from 18 down to 8 before my transplant, but they suddenly found a cancerous tumor on my liver, which made me eligible to be put on the list. First time anyone's celebrated being diagnosed with cancer, I bet! Dennis's stay in the hospital may have been partly due to ascites, which I also had, requiring weekly drainings of my stomach. Questions: Do you have a good Doctor now? Where do you live? Many people in this group know of the best Docs in many cities across the country. Have you filed for Social Security Disability yet? Very important, as Dennis should be eligible now, which would give you both some income and Medicare, too. Your Doctor must help you with that application. Enough for now, but don't hesitate to ask more questions, please. Be ready to be a strong caretaker, and never forget to take care of yourself, too. You both have some difficult times to go through, so you have to remain calm and organized (hence, save all records yourself). Do not take NO for an answer, and remember that you legally do have patient's rights. > > Are there any of you on the list for a transplant? Dennis has a appointment the 21st. with a unit to talk to him about getting on the list. Do you know about the Meld scoring system? It is confusing to me. They say in Jan. when he started it was 10. And now at a 22. I do understand the higher the worse. But thats all i understand. So any info ya'll may have I would greatly appreicate. > He had to stop treatment. Body couldn't handle it. Ended up in hospital for 8 day's had to tap the fluid off him. And now here we are. > > But on a Better note. > Merry Christmas to you all and a Happy New Year. > > Dottie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2010 Report Share Posted December 11, 2010 Hello, Dottie & Dennis and Welcome! You're asking the right questions here, and there are many on this site that can help answer most of your questions. I had a transplant in Sept, 2008, and am one of the few in this group to have gone through it. A great woman named Penney also had a tp, several months before me. O.K. Meld score is the measurement used by UNOS (United Network for Organ Sharing) to indicate the severity of one's End Stage Liver Disease. If you Google Unos & Meld score liver transplant, you'll find lots of great sites. Try to find the best liver transplant hospital's site in your state and read all that they have. Basically, with a MELD score of 22, Dennis is typically acceptable to be put on the transplant list, though some states seem to use different numbers due to the overload of patients versus donor organs available. I have heard (only rumor, though) that in NY, you may need a MELD score of 30, which is higher than the " critical " level of 25. When the MELD is 19-24, Dennis should be having monthly blood tests, and if it gets to 25, then weekly blood work. You should make sure your Doctor writes on the prescription for the blood work that all results are to be faxed or mailed to you, and you should save all records yourself. With the blood test results, you can determine the MELD score by going here: http://www.mayoclinic.org/meld/mayomodel6.html Now, with a 22 MELD, I would be very concerned. Without trying to scare you both, what I mean is that you have to be VERY proactive with both your GI or Hematologist Doctor and with the best nearby liver transplant facility you can find. Google will help you find the best hospitals available. I live in Florida where the wait time for transplant is usually less than the New England states, so it varies as I said. My MELD score went from 18 down to 8 before my transplant, but they suddenly found a cancerous tumor on my liver, which made me eligible to be put on the list. First time anyone's celebrated being diagnosed with cancer, I bet! Dennis's stay in the hospital may have been partly due to ascites, which I also had, requiring weekly drainings of my stomach. Questions: Do you have a good Doctor now? Where do you live? Many people in this group know of the best Docs in many cities across the country. Have you filed for Social Security Disability yet? Very important, as Dennis should be eligible now, which would give you both some income and Medicare, too. Your Doctor must help you with that application. Enough for now, but don't hesitate to ask more questions, please. Be ready to be a strong caretaker, and never forget to take care of yourself, too. You both have some difficult times to go through, so you have to remain calm and organized (hence, save all records yourself). Do not take NO for an answer, and remember that you legally do have patient's rights. > > Are there any of you on the list for a transplant? Dennis has a appointment the 21st. with a unit to talk to him about getting on the list. Do you know about the Meld scoring system? It is confusing to me. They say in Jan. when he started it was 10. And now at a 22. I do understand the higher the worse. But thats all i understand. So any info ya'll may have I would greatly appreicate. > He had to stop treatment. Body couldn't handle it. Ended up in hospital for 8 day's had to tap the fluid off him. And now here we are. > > But on a Better note. > Merry Christmas to you all and a Happy New Year. > > Dottie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2010 Report Share Posted December 12, 2010 Dottie,wish i had some answers for you but i dont know anything about that.hopefully someone else stops in soon and helps ya out,i know the waiting can be painstaking... From: Dottie <williamsdottie@...> Subject: Liver Transplant Hepatitis C Date: Saturday, December 11, 2010, 9:36 AM  Are there any of you on the list for a transplant? Dennis has a appointment the 21st. with a unit to talk to him about getting on the list. Do you know about the Meld scoring system? It is confusing to me. They say in Jan. when he started it was 10. And now at a 22. I do understand the higher the worse. But thats all i understand. So any info ya'll may have I would greatly appreicate. He had to stop treatment. Body couldn't handle it. Ended up in hospital for 8 day's had to tap the fluid off him. And now here we are. But on a Better note. Merry Christmas to you all and a Happy New Year. Dottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2010 Report Share Posted December 12, 2010 Dottie,wish i had some answers for you but i dont know anything about that.hopefully someone else stops in soon and helps ya out,i know the waiting can be painstaking... From: Dottie <williamsdottie@...> Subject: Liver Transplant Hepatitis C Date: Saturday, December 11, 2010, 9:36 AM  Are there any of you on the list for a transplant? Dennis has a appointment the 21st. with a unit to talk to him about getting on the list. Do you know about the Meld scoring system? It is confusing to me. They say in Jan. when he started it was 10. And now at a 22. I do understand the higher the worse. But thats all i understand. So any info ya'll may have I would greatly appreicate. He had to stop treatment. Body couldn't handle it. Ended up in hospital for 8 day's had to tap the fluid off him. And now here we are. But on a Better note. Merry Christmas to you all and a Happy New Year. Dottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2010 Report Share Posted December 12, 2010 One of the most important parts of being on the transplant list is a strong support team. A high level of communication with the doctors, nurses and counselors is paramount. The care giver should be in the examination room with the patient and doctor so there is a second set of ears listening to the doctor, and can remind the patient of questions s/he has. Ask every question you have, keep a log or journal, investigate lab reports and keep copies of ALL lab reports. A good book to read is " Coma Life " by Dr. Darling. He is on his third liver transplant (his wife says this one will work as it came from a woman). The book is a good read for the patient as well as the care provider. I hope all goes well for Dennis, Glenn > > Are there any of you on the list for a transplant? Dennis has a appointment the 21st. with a unit to talk to him about getting on the list. Do you know about the Meld scoring system? It is confusing to me. They say in Jan. when he started it was 10. And now at a 22. I do understand the higher the worse. But thats all i understand. So any info ya'll may have I would greatly appreicate. > He had to stop treatment. Body couldn't handle it. Ended up in hospital for 8 day's had to tap the fluid off him. And now here we are. > > But on a Better note. > Merry Christmas to you all and a Happy New Year. > > Dottie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2010 Report Share Posted December 12, 2010 One of the most important parts of being on the transplant list is a strong support team. A high level of communication with the doctors, nurses and counselors is paramount. The care giver should be in the examination room with the patient and doctor so there is a second set of ears listening to the doctor, and can remind the patient of questions s/he has. Ask every question you have, keep a log or journal, investigate lab reports and keep copies of ALL lab reports. A good book to read is " Coma Life " by Dr. Darling. He is on his third liver transplant (his wife says this one will work as it came from a woman). The book is a good read for the patient as well as the care provider. I hope all goes well for Dennis, Glenn > > Are there any of you on the list for a transplant? Dennis has a appointment the 21st. with a unit to talk to him about getting on the list. Do you know about the Meld scoring system? It is confusing to me. They say in Jan. when he started it was 10. And now at a 22. I do understand the higher the worse. But thats all i understand. So any info ya'll may have I would greatly appreicate. > He had to stop treatment. Body couldn't handle it. Ended up in hospital for 8 day's had to tap the fluid off him. And now here we are. > > But on a Better note. > Merry Christmas to you all and a Happy New Year. > > Dottie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 Thank you so much for you response. Rick We live in boro Arkansas. Our Doctor is in the Clopton Clinic. For the Transplant it will be in Memphis Tenn. which is about 1.5 hours away.At the Methodist Hospital. Web site say's top 3 in the nation. Dennis had a Upper GI endoscopy done this morning and a colonoscopy. Colon was good. Found esophageal varices. Put him on some beta blockers. Said if they bleed we will know it. And this is normal for liver problems. I just don't think they are clear enough for me. And then I have to come home and look up all this myself. There alway's in a hurry or something. I hope the tp hospital won't be like that. No disability yet. Trying to keep his blue cross insurance for now. Medicare or Medicade has a waiting period. of 24 months right? After your procedure how long was it before you were able to get up and get out of the house? Not work. But become more active? Before your tp. were you pretty much tired all the time or still some what able to maintain your daily activities? Well I'v probably asked enough for now. Again thanks. Dottie ________________________________ From: rickkipp <rickkipp@...> Hepatitis C Sent: Sat, December 11, 2010 11:35:03 AM Subject: Re: Liver Transplant  Hello, Dottie & Dennis and Welcome! You're asking the right questions here, and there are many on this site that can help answer most of your questions. I had a transplant in Sept, 2008, and am one of the few in this group to have gone through it. A great woman named Penney also had a tp, several months before me. O.K. Meld score is the measurement used by UNOS (United Network for Organ Sharing) to indicate the severity of one's End Stage Liver Disease. If you Google Unos & Meld score liver transplant, you'll find lots of great sites. Try to find the best liver transplant hospital's site in your state and read all that they have. Basically, with a MELD score of 22, Dennis is typically acceptable to be put on the transplant list, though some states seem to use different numbers due to the overload of patients versus donor organs available. I have heard (only rumor, though) that in NY, you may need a MELD score of 30, which is higher than the " critical " level of 25. When the MELD is 19-24, Dennis should be having monthly blood tests, and if it gets to 25, then weekly blood work. You should make sure your Doctor writes on the prescription for the blood work that all results are to be faxed or mailed to you, and you should save all records yourself. With the blood test results, you can determine the MELD score by going here: http://www.mayoclinic.org/meld/mayomodel6.html Now, with a 22 MELD, I would be very concerned. Without trying to scare you both, what I mean is that you have to be VERY proactive with both your GI or Hematologist Doctor and with the best nearby liver transplant facility you can find. Google will help you find the best hospitals available. I live in Florida where the wait time for transplant is usually less than the New England states, so it varies as I said. My MELD score went from 18 down to 8 before my transplant, but they suddenly found a cancerous tumor on my liver, which made me eligible to be put on the list. First time anyone's celebrated being diagnosed with cancer, I bet! Dennis's stay in the hospital may have been partly due to ascites, which I also had, requiring weekly drainings of my stomach. Questions: Do you have a good Doctor now? Where do you live? Many people in this group know of the best Docs in many cities across the country. Have you filed for Social Security Disability yet? Very important, as Dennis should be eligible now, which would give you both some income and Medicare, too. Your Doctor must help you with that application. Enough for now, but don't hesitate to ask more questions, please. Be ready to be a strong caretaker, and never forget to take care of yourself, too. You both have some difficult times to go through, so you have to remain calm and organized (hence, save all records yourself). Do not take NO for an answer, and remember that you legally do have patient's rights. > > Are there any of you on the list for a transplant? Dennis has a appointment the >21st. with a unit to talk to him about getting on the list. Do you know about >the Meld scoring system? It is confusing to me. They say in Jan. when he started >it was 10. And now at a 22. I do understand the higher the worse. But thats all >i understand. So any info ya'll may have I would greatly appreicate. > He had to stop treatment. Body couldn't handle it. Ended up in hospital for 8 >day's had to tap the fluid off him. And now here we are. > > But on a Better note. > Merry Christmas to you all and a Happy New Year. > > Dottie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 Thank you so much for you response. Rick We live in boro Arkansas. Our Doctor is in the Clopton Clinic. For the Transplant it will be in Memphis Tenn. which is about 1.5 hours away.At the Methodist Hospital. Web site say's top 3 in the nation. Dennis had a Upper GI endoscopy done this morning and a colonoscopy. Colon was good. Found esophageal varices. Put him on some beta blockers. Said if they bleed we will know it. And this is normal for liver problems. I just don't think they are clear enough for me. And then I have to come home and look up all this myself. There alway's in a hurry or something. I hope the tp hospital won't be like that. No disability yet. Trying to keep his blue cross insurance for now. Medicare or Medicade has a waiting period. of 24 months right? After your procedure how long was it before you were able to get up and get out of the house? Not work. But become more active? Before your tp. were you pretty much tired all the time or still some what able to maintain your daily activities? Well I'v probably asked enough for now. Again thanks. Dottie ________________________________ From: rickkipp <rickkipp@...> Hepatitis C Sent: Sat, December 11, 2010 11:35:03 AM Subject: Re: Liver Transplant  Hello, Dottie & Dennis and Welcome! You're asking the right questions here, and there are many on this site that can help answer most of your questions. I had a transplant in Sept, 2008, and am one of the few in this group to have gone through it. A great woman named Penney also had a tp, several months before me. O.K. Meld score is the measurement used by UNOS (United Network for Organ Sharing) to indicate the severity of one's End Stage Liver Disease. If you Google Unos & Meld score liver transplant, you'll find lots of great sites. Try to find the best liver transplant hospital's site in your state and read all that they have. Basically, with a MELD score of 22, Dennis is typically acceptable to be put on the transplant list, though some states seem to use different numbers due to the overload of patients versus donor organs available. I have heard (only rumor, though) that in NY, you may need a MELD score of 30, which is higher than the " critical " level of 25. When the MELD is 19-24, Dennis should be having monthly blood tests, and if it gets to 25, then weekly blood work. You should make sure your Doctor writes on the prescription for the blood work that all results are to be faxed or mailed to you, and you should save all records yourself. With the blood test results, you can determine the MELD score by going here: http://www.mayoclinic.org/meld/mayomodel6.html Now, with a 22 MELD, I would be very concerned. Without trying to scare you both, what I mean is that you have to be VERY proactive with both your GI or Hematologist Doctor and with the best nearby liver transplant facility you can find. Google will help you find the best hospitals available. I live in Florida where the wait time for transplant is usually less than the New England states, so it varies as I said. My MELD score went from 18 down to 8 before my transplant, but they suddenly found a cancerous tumor on my liver, which made me eligible to be put on the list. First time anyone's celebrated being diagnosed with cancer, I bet! Dennis's stay in the hospital may have been partly due to ascites, which I also had, requiring weekly drainings of my stomach. Questions: Do you have a good Doctor now? Where do you live? Many people in this group know of the best Docs in many cities across the country. Have you filed for Social Security Disability yet? Very important, as Dennis should be eligible now, which would give you both some income and Medicare, too. Your Doctor must help you with that application. Enough for now, but don't hesitate to ask more questions, please. Be ready to be a strong caretaker, and never forget to take care of yourself, too. You both have some difficult times to go through, so you have to remain calm and organized (hence, save all records yourself). Do not take NO for an answer, and remember that you legally do have patient's rights. > > Are there any of you on the list for a transplant? Dennis has a appointment the >21st. with a unit to talk to him about getting on the list. Do you know about >the Meld scoring system? It is confusing to me. They say in Jan. when he started >it was 10. And now at a 22. I do understand the higher the worse. But thats all >i understand. So any info ya'll may have I would greatly appreicate. > He had to stop treatment. Body couldn't handle it. Ended up in hospital for 8 >day's had to tap the fluid off him. And now here we are. > > But on a Better note. > Merry Christmas to you all and a Happy New Year. > > Dottie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 Thank you so much for you response. Rick We live in boro Arkansas. Our Doctor is in the Clopton Clinic. For the Transplant it will be in Memphis Tenn. which is about 1.5 hours away.At the Methodist Hospital. Web site say's top 3 in the nation. Dennis had a Upper GI endoscopy done this morning and a colonoscopy. Colon was good. Found esophageal varices. Put him on some beta blockers. Said if they bleed we will know it. And this is normal for liver problems. I just don't think they are clear enough for me. And then I have to come home and look up all this myself. There alway's in a hurry or something. I hope the tp hospital won't be like that. No disability yet. Trying to keep his blue cross insurance for now. Medicare or Medicade has a waiting period. of 24 months right? After your procedure how long was it before you were able to get up and get out of the house? Not work. But become more active? Before your tp. were you pretty much tired all the time or still some what able to maintain your daily activities? Well I'v probably asked enough for now. Again thanks. Dottie ________________________________ From: rickkipp <rickkipp@...> Hepatitis C Sent: Sat, December 11, 2010 11:35:03 AM Subject: Re: Liver Transplant  Hello, Dottie & Dennis and Welcome! You're asking the right questions here, and there are many on this site that can help answer most of your questions. I had a transplant in Sept, 2008, and am one of the few in this group to have gone through it. A great woman named Penney also had a tp, several months before me. O.K. Meld score is the measurement used by UNOS (United Network for Organ Sharing) to indicate the severity of one's End Stage Liver Disease. If you Google Unos & Meld score liver transplant, you'll find lots of great sites. Try to find the best liver transplant hospital's site in your state and read all that they have. Basically, with a MELD score of 22, Dennis is typically acceptable to be put on the transplant list, though some states seem to use different numbers due to the overload of patients versus donor organs available. I have heard (only rumor, though) that in NY, you may need a MELD score of 30, which is higher than the " critical " level of 25. When the MELD is 19-24, Dennis should be having monthly blood tests, and if it gets to 25, then weekly blood work. You should make sure your Doctor writes on the prescription for the blood work that all results are to be faxed or mailed to you, and you should save all records yourself. With the blood test results, you can determine the MELD score by going here: http://www.mayoclinic.org/meld/mayomodel6.html Now, with a 22 MELD, I would be very concerned. Without trying to scare you both, what I mean is that you have to be VERY proactive with both your GI or Hematologist Doctor and with the best nearby liver transplant facility you can find. Google will help you find the best hospitals available. I live in Florida where the wait time for transplant is usually less than the New England states, so it varies as I said. My MELD score went from 18 down to 8 before my transplant, but they suddenly found a cancerous tumor on my liver, which made me eligible to be put on the list. First time anyone's celebrated being diagnosed with cancer, I bet! Dennis's stay in the hospital may have been partly due to ascites, which I also had, requiring weekly drainings of my stomach. Questions: Do you have a good Doctor now? Where do you live? Many people in this group know of the best Docs in many cities across the country. Have you filed for Social Security Disability yet? Very important, as Dennis should be eligible now, which would give you both some income and Medicare, too. Your Doctor must help you with that application. Enough for now, but don't hesitate to ask more questions, please. Be ready to be a strong caretaker, and never forget to take care of yourself, too. You both have some difficult times to go through, so you have to remain calm and organized (hence, save all records yourself). Do not take NO for an answer, and remember that you legally do have patient's rights. > > Are there any of you on the list for a transplant? Dennis has a appointment the >21st. with a unit to talk to him about getting on the list. Do you know about >the Meld scoring system? It is confusing to me. They say in Jan. when he started >it was 10. And now at a 22. I do understand the higher the worse. But thats all >i understand. So any info ya'll may have I would greatly appreicate. > He had to stop treatment. Body couldn't handle it. Ended up in hospital for 8 >day's had to tap the fluid off him. And now here we are. > > But on a Better note. > Merry Christmas to you all and a Happy New Year. > > Dottie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 Thank you so much for you response. Rick We live in boro Arkansas. Our Doctor is in the Clopton Clinic. For the Transplant it will be in Memphis Tenn. which is about 1.5 hours away.At the Methodist Hospital. Web site say's top 3 in the nation. Dennis had a Upper GI endoscopy done this morning and a colonoscopy. Colon was good. Found esophageal varices. Put him on some beta blockers. Said if they bleed we will know it. And this is normal for liver problems. I just don't think they are clear enough for me. And then I have to come home and look up all this myself. There alway's in a hurry or something. I hope the tp hospital won't be like that. No disability yet. Trying to keep his blue cross insurance for now. Medicare or Medicade has a waiting period. of 24 months right? After your procedure how long was it before you were able to get up and get out of the house? Not work. But become more active? Before your tp. were you pretty much tired all the time or still some what able to maintain your daily activities? Well I'v probably asked enough for now. Again thanks. Dottie ________________________________ From: rickkipp <rickkipp@...> Hepatitis C Sent: Sat, December 11, 2010 11:35:03 AM Subject: Re: Liver Transplant  Hello, Dottie & Dennis and Welcome! You're asking the right questions here, and there are many on this site that can help answer most of your questions. I had a transplant in Sept, 2008, and am one of the few in this group to have gone through it. A great woman named Penney also had a tp, several months before me. O.K. Meld score is the measurement used by UNOS (United Network for Organ Sharing) to indicate the severity of one's End Stage Liver Disease. If you Google Unos & Meld score liver transplant, you'll find lots of great sites. Try to find the best liver transplant hospital's site in your state and read all that they have. Basically, with a MELD score of 22, Dennis is typically acceptable to be put on the transplant list, though some states seem to use different numbers due to the overload of patients versus donor organs available. I have heard (only rumor, though) that in NY, you may need a MELD score of 30, which is higher than the " critical " level of 25. When the MELD is 19-24, Dennis should be having monthly blood tests, and if it gets to 25, then weekly blood work. You should make sure your Doctor writes on the prescription for the blood work that all results are to be faxed or mailed to you, and you should save all records yourself. With the blood test results, you can determine the MELD score by going here: http://www.mayoclinic.org/meld/mayomodel6.html Now, with a 22 MELD, I would be very concerned. Without trying to scare you both, what I mean is that you have to be VERY proactive with both your GI or Hematologist Doctor and with the best nearby liver transplant facility you can find. Google will help you find the best hospitals available. I live in Florida where the wait time for transplant is usually less than the New England states, so it varies as I said. My MELD score went from 18 down to 8 before my transplant, but they suddenly found a cancerous tumor on my liver, which made me eligible to be put on the list. First time anyone's celebrated being diagnosed with cancer, I bet! Dennis's stay in the hospital may have been partly due to ascites, which I also had, requiring weekly drainings of my stomach. Questions: Do you have a good Doctor now? Where do you live? Many people in this group know of the best Docs in many cities across the country. Have you filed for Social Security Disability yet? Very important, as Dennis should be eligible now, which would give you both some income and Medicare, too. Your Doctor must help you with that application. Enough for now, but don't hesitate to ask more questions, please. Be ready to be a strong caretaker, and never forget to take care of yourself, too. You both have some difficult times to go through, so you have to remain calm and organized (hence, save all records yourself). Do not take NO for an answer, and remember that you legally do have patient's rights. > > Are there any of you on the list for a transplant? Dennis has a appointment the >21st. with a unit to talk to him about getting on the list. Do you know about >the Meld scoring system? It is confusing to me. They say in Jan. when he started >it was 10. And now at a 22. I do understand the higher the worse. But thats all >i understand. So any info ya'll may have I would greatly appreicate. > He had to stop treatment. Body couldn't handle it. Ended up in hospital for 8 >day's had to tap the fluid off him. And now here we are. > > But on a Better note. > Merry Christmas to you all and a Happy New Year. > > Dottie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 Well, it sounds as if you have your Doc and tp hospital in line. That's great. I, too, had gastric varices, but mine weren't found until I was vomiting huge amounts of blood and tissue. It was nearly fatal for me, and I was pretty much unconscious and in a coma. They can be very dangerous if they suddenly break open and bleed, so it's good that they're aware of it. When you apply for Social Security Disability, they will go back to a date they determine you were unable to work, but I believe the maximum they can go back is 18 months. I was approved on my first application, and received a check for over $17,000 for back pay! Don't wait to apply. Most people are denied the first time. You have to stress not only all the physical problems (thus, why Dennis can't work), but also it's critical to emphasize the mental problems that go along with this disease: things like anxiety, fear, constant pain, fatique, inability to sleep, etc. That really helped my case, and they told me that. I'm still on SSDisability (have been for 4 years), but I turn 65 in 5 months, so they'll just switch it to regular Social Security - no change in income or insurance. btw, my Medicare Advantage insurance is taken out of my SS check each month, but it only costs me $96.50 per month, probably a lot cheaper than your BC/BS now. And, I use the VA for all my meds, costing me absolutely nothing, though they cost me a good $10,000 per year on my insurance, before I got the VA. My rejection meds (Prograf) are around $1,200 monthly when I reach the insurance co's " doughnut " hole, so you have to think ahead for post tp costs. I had many problems after tp, mostly with infections, but none with rejection. I was hospitalized several times for days at a time, as I needed IV antibiotics. Most people are ready to do light work such as desk stuff after 3 months, and more physical work after 6 months, but that is a rough guideline only. Look at Steve Jobs of Apple. I think he was back at work within a few months! It took me 1-1/2 years to be near normal, but after 3 full 48 week treatments, I am weakened for live. As an ex-construction worker, I love doing things around the house, but I'm quite tired after 2 hours of physical work. So, I work until I can't! My wife's always after me to " take it easy " , but that's just not my style, plus I'm a stubborn SOB! I'm very hopeful for you both. You appear to have your ducks in line and you also realize tha the Docs can be a pain in the ass. That's why I said in my first post that you MUST keep all blood test results as well as any other test results you can get (ultrasounds, MRI's, etc.). And, you do have to be proactive, as these Docs are extremely busy, and unless you stay under their skin, they may just forget about certain aspects of Dennis's care. Write down each Doc's name and profession, as well as all the head nurses on his floor. They can be you ally and help you contact the Docs for questions. We had to keep reminding them all of all the meds I was supposed to be on, as they just kept forgetting them, which can be very dangerous. Take care, and get on the tp list! And get on SSD! You have paid into this insurance system all your lives, and it's time to receive your just desserts. > > Thank you so much for you response. Rick > We live in boro Arkansas. Our Doctor is in the Clopton Clinic. For the > Transplant it will be in Memphis Tenn. which is about 1.5 hours away.At the > Methodist Hospital. Web site say's top 3 in the nation. Dennis had a Upper GI > endoscopy done this morning and a colonoscopy. Colon was good. Found esophageal > varices. Put him on some beta blockers. Said if they bleed we will know it. And > this is normal for liver problems. I just don't think they are clear enough for > me. And then I have to come home and look up all this myself. There alway's in a > hurry or something. I hope the tp hospital won't be like that. > No disability yet. Trying to keep his blue cross insurance for now. Medicare or > Medicade has a waiting period. of 24 months right? > > After your procedure how long was it before you were able to get up and get out > of the house? Not work. But become more active? > Before your tp. were you pretty much tired all the time or still some what able > to maintain your daily activities? > Well I'v probably asked enough for now. > Again thanks. > Dottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 Well, it sounds as if you have your Doc and tp hospital in line. That's great. I, too, had gastric varices, but mine weren't found until I was vomiting huge amounts of blood and tissue. It was nearly fatal for me, and I was pretty much unconscious and in a coma. They can be very dangerous if they suddenly break open and bleed, so it's good that they're aware of it. When you apply for Social Security Disability, they will go back to a date they determine you were unable to work, but I believe the maximum they can go back is 18 months. I was approved on my first application, and received a check for over $17,000 for back pay! Don't wait to apply. Most people are denied the first time. You have to stress not only all the physical problems (thus, why Dennis can't work), but also it's critical to emphasize the mental problems that go along with this disease: things like anxiety, fear, constant pain, fatique, inability to sleep, etc. That really helped my case, and they told me that. I'm still on SSDisability (have been for 4 years), but I turn 65 in 5 months, so they'll just switch it to regular Social Security - no change in income or insurance. btw, my Medicare Advantage insurance is taken out of my SS check each month, but it only costs me $96.50 per month, probably a lot cheaper than your BC/BS now. And, I use the VA for all my meds, costing me absolutely nothing, though they cost me a good $10,000 per year on my insurance, before I got the VA. My rejection meds (Prograf) are around $1,200 monthly when I reach the insurance co's " doughnut " hole, so you have to think ahead for post tp costs. I had many problems after tp, mostly with infections, but none with rejection. I was hospitalized several times for days at a time, as I needed IV antibiotics. Most people are ready to do light work such as desk stuff after 3 months, and more physical work after 6 months, but that is a rough guideline only. Look at Steve Jobs of Apple. I think he was back at work within a few months! It took me 1-1/2 years to be near normal, but after 3 full 48 week treatments, I am weakened for live. As an ex-construction worker, I love doing things around the house, but I'm quite tired after 2 hours of physical work. So, I work until I can't! My wife's always after me to " take it easy " , but that's just not my style, plus I'm a stubborn SOB! I'm very hopeful for you both. You appear to have your ducks in line and you also realize tha the Docs can be a pain in the ass. That's why I said in my first post that you MUST keep all blood test results as well as any other test results you can get (ultrasounds, MRI's, etc.). And, you do have to be proactive, as these Docs are extremely busy, and unless you stay under their skin, they may just forget about certain aspects of Dennis's care. Write down each Doc's name and profession, as well as all the head nurses on his floor. They can be you ally and help you contact the Docs for questions. We had to keep reminding them all of all the meds I was supposed to be on, as they just kept forgetting them, which can be very dangerous. Take care, and get on the tp list! And get on SSD! You have paid into this insurance system all your lives, and it's time to receive your just desserts. > > Thank you so much for you response. Rick > We live in boro Arkansas. Our Doctor is in the Clopton Clinic. For the > Transplant it will be in Memphis Tenn. which is about 1.5 hours away.At the > Methodist Hospital. Web site say's top 3 in the nation. Dennis had a Upper GI > endoscopy done this morning and a colonoscopy. Colon was good. Found esophageal > varices. Put him on some beta blockers. Said if they bleed we will know it. And > this is normal for liver problems. I just don't think they are clear enough for > me. And then I have to come home and look up all this myself. There alway's in a > hurry or something. I hope the tp hospital won't be like that. > No disability yet. Trying to keep his blue cross insurance for now. Medicare or > Medicade has a waiting period. of 24 months right? > > After your procedure how long was it before you were able to get up and get out > of the house? Not work. But become more active? > Before your tp. were you pretty much tired all the time or still some what able > to maintain your daily activities? > Well I'v probably asked enough for now. > Again thanks. > Dottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 Well, it sounds as if you have your Doc and tp hospital in line. That's great. I, too, had gastric varices, but mine weren't found until I was vomiting huge amounts of blood and tissue. It was nearly fatal for me, and I was pretty much unconscious and in a coma. They can be very dangerous if they suddenly break open and bleed, so it's good that they're aware of it. When you apply for Social Security Disability, they will go back to a date they determine you were unable to work, but I believe the maximum they can go back is 18 months. I was approved on my first application, and received a check for over $17,000 for back pay! Don't wait to apply. Most people are denied the first time. You have to stress not only all the physical problems (thus, why Dennis can't work), but also it's critical to emphasize the mental problems that go along with this disease: things like anxiety, fear, constant pain, fatique, inability to sleep, etc. That really helped my case, and they told me that. I'm still on SSDisability (have been for 4 years), but I turn 65 in 5 months, so they'll just switch it to regular Social Security - no change in income or insurance. btw, my Medicare Advantage insurance is taken out of my SS check each month, but it only costs me $96.50 per month, probably a lot cheaper than your BC/BS now. And, I use the VA for all my meds, costing me absolutely nothing, though they cost me a good $10,000 per year on my insurance, before I got the VA. My rejection meds (Prograf) are around $1,200 monthly when I reach the insurance co's " doughnut " hole, so you have to think ahead for post tp costs. I had many problems after tp, mostly with infections, but none with rejection. I was hospitalized several times for days at a time, as I needed IV antibiotics. Most people are ready to do light work such as desk stuff after 3 months, and more physical work after 6 months, but that is a rough guideline only. Look at Steve Jobs of Apple. I think he was back at work within a few months! It took me 1-1/2 years to be near normal, but after 3 full 48 week treatments, I am weakened for live. As an ex-construction worker, I love doing things around the house, but I'm quite tired after 2 hours of physical work. So, I work until I can't! My wife's always after me to " take it easy " , but that's just not my style, plus I'm a stubborn SOB! I'm very hopeful for you both. You appear to have your ducks in line and you also realize tha the Docs can be a pain in the ass. That's why I said in my first post that you MUST keep all blood test results as well as any other test results you can get (ultrasounds, MRI's, etc.). And, you do have to be proactive, as these Docs are extremely busy, and unless you stay under their skin, they may just forget about certain aspects of Dennis's care. Write down each Doc's name and profession, as well as all the head nurses on his floor. They can be you ally and help you contact the Docs for questions. We had to keep reminding them all of all the meds I was supposed to be on, as they just kept forgetting them, which can be very dangerous. Take care, and get on the tp list! And get on SSD! You have paid into this insurance system all your lives, and it's time to receive your just desserts. > > Thank you so much for you response. Rick > We live in boro Arkansas. Our Doctor is in the Clopton Clinic. For the > Transplant it will be in Memphis Tenn. which is about 1.5 hours away.At the > Methodist Hospital. Web site say's top 3 in the nation. Dennis had a Upper GI > endoscopy done this morning and a colonoscopy. Colon was good. Found esophageal > varices. Put him on some beta blockers. Said if they bleed we will know it. And > this is normal for liver problems. I just don't think they are clear enough for > me. And then I have to come home and look up all this myself. There alway's in a > hurry or something. I hope the tp hospital won't be like that. > No disability yet. Trying to keep his blue cross insurance for now. Medicare or > Medicade has a waiting period. of 24 months right? > > After your procedure how long was it before you were able to get up and get out > of the house? Not work. But become more active? > Before your tp. were you pretty much tired all the time or still some what able > to maintain your daily activities? > Well I'v probably asked enough for now. > Again thanks. > Dottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 Well, it sounds as if you have your Doc and tp hospital in line. That's great. I, too, had gastric varices, but mine weren't found until I was vomiting huge amounts of blood and tissue. It was nearly fatal for me, and I was pretty much unconscious and in a coma. They can be very dangerous if they suddenly break open and bleed, so it's good that they're aware of it. When you apply for Social Security Disability, they will go back to a date they determine you were unable to work, but I believe the maximum they can go back is 18 months. I was approved on my first application, and received a check for over $17,000 for back pay! Don't wait to apply. Most people are denied the first time. You have to stress not only all the physical problems (thus, why Dennis can't work), but also it's critical to emphasize the mental problems that go along with this disease: things like anxiety, fear, constant pain, fatique, inability to sleep, etc. That really helped my case, and they told me that. I'm still on SSDisability (have been for 4 years), but I turn 65 in 5 months, so they'll just switch it to regular Social Security - no change in income or insurance. btw, my Medicare Advantage insurance is taken out of my SS check each month, but it only costs me $96.50 per month, probably a lot cheaper than your BC/BS now. And, I use the VA for all my meds, costing me absolutely nothing, though they cost me a good $10,000 per year on my insurance, before I got the VA. My rejection meds (Prograf) are around $1,200 monthly when I reach the insurance co's " doughnut " hole, so you have to think ahead for post tp costs. I had many problems after tp, mostly with infections, but none with rejection. I was hospitalized several times for days at a time, as I needed IV antibiotics. Most people are ready to do light work such as desk stuff after 3 months, and more physical work after 6 months, but that is a rough guideline only. Look at Steve Jobs of Apple. I think he was back at work within a few months! It took me 1-1/2 years to be near normal, but after 3 full 48 week treatments, I am weakened for live. As an ex-construction worker, I love doing things around the house, but I'm quite tired after 2 hours of physical work. So, I work until I can't! My wife's always after me to " take it easy " , but that's just not my style, plus I'm a stubborn SOB! I'm very hopeful for you both. You appear to have your ducks in line and you also realize tha the Docs can be a pain in the ass. That's why I said in my first post that you MUST keep all blood test results as well as any other test results you can get (ultrasounds, MRI's, etc.). And, you do have to be proactive, as these Docs are extremely busy, and unless you stay under their skin, they may just forget about certain aspects of Dennis's care. Write down each Doc's name and profession, as well as all the head nurses on his floor. They can be you ally and help you contact the Docs for questions. We had to keep reminding them all of all the meds I was supposed to be on, as they just kept forgetting them, which can be very dangerous. Take care, and get on the tp list! And get on SSD! You have paid into this insurance system all your lives, and it's time to receive your just desserts. > > Thank you so much for you response. Rick > We live in boro Arkansas. Our Doctor is in the Clopton Clinic. For the > Transplant it will be in Memphis Tenn. which is about 1.5 hours away.At the > Methodist Hospital. Web site say's top 3 in the nation. Dennis had a Upper GI > endoscopy done this morning and a colonoscopy. Colon was good. Found esophageal > varices. Put him on some beta blockers. Said if they bleed we will know it. And > this is normal for liver problems. I just don't think they are clear enough for > me. And then I have to come home and look up all this myself. There alway's in a > hurry or something. I hope the tp hospital won't be like that. > No disability yet. Trying to keep his blue cross insurance for now. Medicare or > Medicade has a waiting period. of 24 months right? > > After your procedure how long was it before you were able to get up and get out > of the house? Not work. But become more active? > Before your tp. were you pretty much tired all the time or still some what able > to maintain your daily activities? > Well I'v probably asked enough for now. > Again thanks. > Dottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Congratulations to you both! This is terrific news. With a MELD score of 19, he should have plenty of time to wait for the best donor organ. Keep us posted, and keep your bags packed! > > Just wanted to say that Dennis has been approved for his Transplant. > Meld score of 19 put him to the top of list in the type B blood group. > > I had never thought much about being a Donor before now. But I would like to say how important this has become in our life.And I now find myself asking all I talk to if they are a donor and how they should really think how important this is. God bless you all that have had a second chance and those that may have that chance in the future.!!!!! > > Dottie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Congratulations to you both! This is terrific news. With a MELD score of 19, he should have plenty of time to wait for the best donor organ. Keep us posted, and keep your bags packed! > > Just wanted to say that Dennis has been approved for his Transplant. > Meld score of 19 put him to the top of list in the type B blood group. > > I had never thought much about being a Donor before now. But I would like to say how important this has become in our life.And I now find myself asking all I talk to if they are a donor and how they should really think how important this is. God bless you all that have had a second chance and those that may have that chance in the future.!!!!! > > Dottie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Congratulations to you both! This is terrific news. With a MELD score of 19, he should have plenty of time to wait for the best donor organ. Keep us posted, and keep your bags packed! > > Just wanted to say that Dennis has been approved for his Transplant. > Meld score of 19 put him to the top of list in the type B blood group. > > I had never thought much about being a Donor before now. But I would like to say how important this has become in our life.And I now find myself asking all I talk to if they are a donor and how they should really think how important this is. God bless you all that have had a second chance and those that may have that chance in the future.!!!!! > > Dottie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Congratulations to you both! This is terrific news. With a MELD score of 19, he should have plenty of time to wait for the best donor organ. Keep us posted, and keep your bags packed! > > Just wanted to say that Dennis has been approved for his Transplant. > Meld score of 19 put him to the top of list in the type B blood group. > > I had never thought much about being a Donor before now. But I would like to say how important this has become in our life.And I now find myself asking all I talk to if they are a donor and how they should really think how important this is. God bless you all that have had a second chance and those that may have that chance in the future.!!!!! > > Dottie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Dottie, There are several groups that promote organ donation. " Donate Life " and L.O.L.A. are very active in making people aware that more organ donors are needed. Glenn > > Just wanted to say that Dennis has been approved for his Transplant. > Meld score of 19 put him to the top of list in the type B blood group. > > I had never thought much about being a Donor before now. But I would like to say how important this has become in our life.And I now find myself asking all I talk to if they are a donor and how they should really think how important this is. God bless you all that have had a second chance and those that may have that chance in the future.!!!!! > > Dottie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Dottie, There are several groups that promote organ donation. " Donate Life " and L.O.L.A. are very active in making people aware that more organ donors are needed. Glenn > > Just wanted to say that Dennis has been approved for his Transplant. > Meld score of 19 put him to the top of list in the type B blood group. > > I had never thought much about being a Donor before now. But I would like to say how important this has become in our life.And I now find myself asking all I talk to if they are a donor and how they should really think how important this is. God bless you all that have had a second chance and those that may have that chance in the future.!!!!! > > Dottie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Dottie, There are several groups that promote organ donation. " Donate Life " and L.O.L.A. are very active in making people aware that more organ donors are needed. Glenn > > Just wanted to say that Dennis has been approved for his Transplant. > Meld score of 19 put him to the top of list in the type B blood group. > > I had never thought much about being a Donor before now. But I would like to say how important this has become in our life.And I now find myself asking all I talk to if they are a donor and how they should really think how important this is. God bless you all that have had a second chance and those that may have that chance in the future.!!!!! > > Dottie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Dottie, There are several groups that promote organ donation. " Donate Life " and L.O.L.A. are very active in making people aware that more organ donors are needed. Glenn > > Just wanted to say that Dennis has been approved for his Transplant. > Meld score of 19 put him to the top of list in the type B blood group. > > I had never thought much about being a Donor before now. But I would like to say how important this has become in our life.And I now find myself asking all I talk to if they are a donor and how they should really think how important this is. God bless you all that have had a second chance and those that may have that chance in the future.!!!!! > > Dottie > Quote Link to comment Share on other sites More sharing options...
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