Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 OK so I was a little jumpy about changing doctors however I will say that everything I understand about PSC and being on the transplant list the MELD score is not alway the best for those with PSC. It is also my understanding that there are those who may be listed are because of their symptoms are making the persons life almost unlivable. In the case of my husband, to look at him you would never guess that he would be going through the process of being listed. However his symptoms are too frequent so his specialist sent his name to the transplant clinic. My other opinion has to do with my understanding of how the liver biopsy does not always show how well the liver really is doing. Once again, I understand that it does not matter when you are listed because of the MELD. SO my question is this... would you rather go through the process of being listed while your health is fairly good, and build a firm foundation with your transplant team, or wait until your health is not at it's most optimal? So as I said earlier I may have been a bit jumpy about changing doctors, but I would get a second opinion. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 > > OK so I was a little jumpy about changing doctors however I will say > that everything I understand about PSC and being on the transplant > list the MELD score is not alway the best for those with PSC. It is > also my understanding that there are those who may be listed are > because of their symptoms are making the persons life almost > unlivable. In the case of my husband, to look at him you would never > guess that he would be going through the process of being listed. > However his symptoms are too frequent so his specialist sent his > name to the transplant clinic. My other opinion has to do with my > understanding of how the liver biopsy does not always show how well > the liver really is doing. Once again, I understand that it does not > matter when you are listed because of the MELD. SO my question is > this... would you rather go through the process of being listed > while your health is fairly good, and build a firm foundation with > your transplant team, or wait until your health is not at it's most > optimal? > > So as I said earlier I may have been a bit jumpy about changing > doctors, but I would get a second opinion. > Although I know not everyone will agree with me we have had this discussion before about fairness of MELD for PSC patients. I believe this to be more urban myth than a conclusion based on fact. Here is a statistical view Tim Romlein posted a couple of months ago on the subject... >During the last 2 years (when MELD was being used to allocate liver >transplants), PSC patients were removed from the waiting list because >of death at 60% of the average for all diseases. Those with >Cholangiocarcinoma fared even better only having 30% of the average >death rate. PBC on the other hand had death rates almost identical to >the average. >In the " Too Sick to Transplant " category, PSC retained a slight >advantage (less than the average became too sick). Those with >Cholangiocarcinoma became too sick at almost double the average rate >and PBC was once again average. >Living Donor transplants (LDLT) were almost three times the average >among PSC patients. Cadaveric liver transplants were about average >for those with PSC. >It would appear from my quick look at the numbers that the high LDLT >rate kept PSC patients from getting too sick or dieing while on the >waiting list at the average for all diseases. MELD does not appear to >disadvantage PSC patients in getting allocated a cadaveric liver. The fact of the matter is too many patients die waiting for transplant but this is equally true for those suffering from PSC, PBC, Hepatitis, and other liver diseases. The best answer is to increase donotation and/or find a cure. I agree liver biopsy by itself is not a good indication of disease progression but it is a piece of the puzzle. The doctor will look at that along with the other pieces including quality of life to reach a decision about listing. My point is not to get stressed or fire doctors just because they won't list you. 99.9% of the time doctors have your best interest in mind. I just think we need to partner with them with a team mentality rather than advesarily push for a listing before it is time. in Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Thanks - I see where you explained MELD ... do you know what things they look at in the meld? Someone else mentioned " stages " that's new to me too.... barbara in MD > > > > > > All my ducts are blocked, but my liver biopsy showed no cirhosis - > > > > so my dr said I don't go on the transplant list ... no > > jaundice ... > > > never heard of the meld - what is that...so am I lucky not to > have > > > to go on the list or should I be pushing more???? Biggest > > complaint > > > is incredible fatigue and weakness, pain off an on, complications > > > with pancreatitis and eating ... > > > > > > > > I disagree, if you are not sick enough to go on the transplant list > they are not going to put you on the list. We as patients don't get > to make that decision. The length of time you are on the list no > longer has any impact on wait time, it is simply a function of your > MELD score that dictates who gets a liver and who does not. MELD > score is a calculator developed by the MAYO clinic and used by UNOS > that factors several lab results to generate a score. This measures > how sick you are and thus who gets a liver. It is not a perfect > system but is the fairest system we have. When your doctor feels > your symptoms are worsening he/she will then consult with colleagues > and they will as a group decide to list you. Getting on early is > only going to mean you will wait on the list longer but the end point > will still be the same. Not listing you yet is not a reason to > switch doctors. Of course I speak in generalities here and there > always special cases that may require a little prodding on the > patients part. > > in Seattle > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Thanks - I see where you explained MELD ... do you know what things they look at in the meld? Someone else mentioned " stages " that's new to me too.... barbara in MD > > > > > > All my ducts are blocked, but my liver biopsy showed no cirhosis - > > > > so my dr said I don't go on the transplant list ... no > > jaundice ... > > > never heard of the meld - what is that...so am I lucky not to > have > > > to go on the list or should I be pushing more???? Biggest > > complaint > > > is incredible fatigue and weakness, pain off an on, complications > > > with pancreatitis and eating ... > > > > > > > > I disagree, if you are not sick enough to go on the transplant list > they are not going to put you on the list. We as patients don't get > to make that decision. The length of time you are on the list no > longer has any impact on wait time, it is simply a function of your > MELD score that dictates who gets a liver and who does not. MELD > score is a calculator developed by the MAYO clinic and used by UNOS > that factors several lab results to generate a score. This measures > how sick you are and thus who gets a liver. It is not a perfect > system but is the fairest system we have. When your doctor feels > your symptoms are worsening he/she will then consult with colleagues > and they will as a group decide to list you. Getting on early is > only going to mean you will wait on the list longer but the end point > will still be the same. Not listing you yet is not a reason to > switch doctors. Of course I speak in generalities here and there > always special cases that may require a little prodding on the > patients part. > > in Seattle > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Thanks - I see where you explained MELD ... do you know what things they look at in the meld? Someone else mentioned " stages " that's new to me too.... barbara in MD > > > > > > All my ducts are blocked, but my liver biopsy showed no cirhosis - > > > > so my dr said I don't go on the transplant list ... no > > jaundice ... > > > never heard of the meld - what is that...so am I lucky not to > have > > > to go on the list or should I be pushing more???? Biggest > > complaint > > > is incredible fatigue and weakness, pain off an on, complications > > > with pancreatitis and eating ... > > > > > > > > I disagree, if you are not sick enough to go on the transplant list > they are not going to put you on the list. We as patients don't get > to make that decision. The length of time you are on the list no > longer has any impact on wait time, it is simply a function of your > MELD score that dictates who gets a liver and who does not. MELD > score is a calculator developed by the MAYO clinic and used by UNOS > that factors several lab results to generate a score. This measures > how sick you are and thus who gets a liver. It is not a perfect > system but is the fairest system we have. When your doctor feels > your symptoms are worsening he/she will then consult with colleagues > and they will as a group decide to list you. Getting on early is > only going to mean you will wait on the list longer but the end point > will still be the same. Not listing you yet is not a reason to > switch doctors. Of course I speak in generalities here and there > always special cases that may require a little prodding on the > patients part. > > in Seattle > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 > > Thanks - I see where you explained MELD ... do you know what > things they look at in the meld? Someone else mentioned " stages " > that's new to me too.... > > barbara in MD > Martha answered your question about MELD but here is some background on PSC staging. PSC has four stages. Here are the stages as found on the Mayo clinic Website... Stages of PSC Stage 1 -- Fibrosis or scar tissue limited to a few spots called portal areas, little areas of " plumbing " or ductwork in the liver tissue Stage 2 -- Fibrosis begins to appear outside the portal areas. The strands of fibrosis are not yet connected to each other Stage 3 -- Areas of fibrosis connecting to each other Stage 4 -- Widespread, honeycomblike scarring known as cirrhosis You will find most doctors rarely talk about stage of disease because although it may be an indication of progression it has little impact in regards to listing, time to transplant, or approach to treatment. Some patients may initially diagnosed at Stage 1 but will rapidly progress through the four stages while someone else may be diagnosed at Stage 3 and stay that way for many many years. Often all staging really does is cause a patient worry and stress. Staging is usually defined following a liver biopsy along with other factors such as ultrasound, ERCP, etc (Tip of the hat to Barb in Texas)! If the doctor has not told you what stage you are at you can ask her at your next appointment but I would not lose a lot of sleep over and you will probably find she is reluctant to talk much about it based on the reasons I mentioned above. Hope that helps. in Seattle Quote Link to comment Share on other sites More sharing options...
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