Does anybody know anything about a new standard for liver transplant listing instead of MELD score? I may loopy but I can tell when the wool is being pulled over my eyes. I have all the imformation my GI doc needs for a referral to UCSF for liver trans eval. I was sick two years ago and UCSF has my records. (very sick but not sick enough to be listed)...which was good news. I called UCSF and they know nothing about a new standard of transp listing. I have an appt this thursday...quack doctor? or is he on to something that I'm not aware of.
thanks rivll. Man its like I go into denial when I see the Dr. I told him I'm not sick enough to be listed. Yet I really do want to be. I said "I'm not dead man walking with a belly like I'm prego"...please no offence to anybody out there in internet land. I get loopy and speak before thinking about it ....but thats another forum. LOLOlol ~kelly
I'm glad that you are being referred to the UCSF transplant center. Is the doctor that you're seeing on Thursday the gastroenterologist, or the hepatologist at UCSF?
I don't know if you ever looked back at your post on this forum last month, but I responded to your post and so did some forum members who have Cirrhosis.
I have not heard of a another standard for transplant assessments. I know that the University of Washington's liver transplant center uses the MELD score as part of their assessment for a liver transplant. I know that there are other criteria that they consider to determine eligibility for a transplant besides the MELD score.
You mentioned denial in your post above. The problem with denial is that it can keep us stuck an unable to take action. You've started the process to be referred to the transplant clinic, so you are not stuck! Way to go!
I know it's scary, but if you do nothing, you'll get sicker. If you do something, your symptoms can be managed so that your liver can function as well as possible.
Actually, being "loopy" is one of the symptoms of your liver disease, and it can be treated by your hepatologist.
Hang in there.
Thanks for your reply A1955. Yes GI appt today at 3:15pm. I tried to get the AFP test results over the phone and of course they wouldn't give em to me and understood. Actually I gave the GI dr the contact imformation for UCSF eval. and he gave it back to me and said that he knows some "big wig" in SF.I am intouch with the UCSF eval office staff.. She is supportive of me and says I'm on the right track. I'm going to get up there one way or the other and even if I have switch doctors wait a few months. I'm going to start working on that. I know I'm loopy. I think they loopy. I don't want to go off on a rant. I'll just say it's frustrating dealing with the system. I'm fighting for proper health care.
Proposal to Add Serum Sodium to the MELD Score
• Affected/Proposed Policy: Policy 18.104.22.168 (Adult Candidate Status)
• Sponsoring Committee: Liver and Intestinal Organ Transplantation
The Committee is proposing to add serum sodium to the MELD score equation. Based on simulation modeling results, this change could reduce waiting list mortality by 50-60 deaths per year without adversely affecting post-transplant survival or negatively impacting any group of candidates (e.g., age, gender, ethnicity, diagnosis).
• Affected Groups
Directors of Organ Procurement
Transplant Data Coordinators
PR/Public Education Staff
Transplant Program Directors
Transplant Social Workers
• Number of Potential Candidates Affected
This is estimated to save 50-60 lives annually.
• Compliance with OPTN Key Goals and Final Rule
This addresses the key goal to “Increase access to transplants” specifically the indicator “Waiting list mortality rates” by better prioritizing those most in need of a liver.
Acute liver failure (ALF) is a devastating clinical syndrome with a high mortality rate. The MELD score has been implied as a prognostic tool in ALF. Hyponatremia is associated with lethal outcome in ALF. Inclusion of serum sodium (Na) into the MELD score was found to improve its predictive value in cirrhotic patients. Therefore the aim of this study was to determine whether inclusion of serum Na improves the predictive value of MELD in ALF compared to established criteria.
In a prospective single center study (11/2006--12/2010), we recruited 108 consecutive ALF patients (64% females / 36% males), who met the criteria defined by the "Acute Liver Failure Study Group Germany". Upon admission, clinical and laboratory data were collected, King's College Criteria (KCC), Model of End Stage Liver Disease score (MELD), and serum sodium based modifications like the MELD-Na score and the United Kingdom Model of End Stage Liver Disease score (UKELD) were calculated and area under the receiver operating characteristic curve analyses were performed regarding the prediction of spontaneous recovery (SR) or non-spontaneous recovery (NSR; death or transplantation).
Serum bilirubin was of no prognostic value in ALF, and Na also failed to predict NSR in ALF. The classical MELD score was superior to sodium-based modifications and KCC.
We validated the prognostic value of MELD-Na and UKELD in ALF. Classic MELD score calculations performed superior to KCC in the prediction of NSR. Serum Na and Na-based modifications of MELD did not further improve its prognostic value.
The complete article is available as a provisional PDF. The fully formatted PDF and HTML versions are in production.
thanks A1955, I'm now taking my lab value. My AFP is 195 today. I am scheduled for a MRI to check for lesion on liver. II was hoing for a range of like 50 or under. Looks like it's starting to climb again. I don't understand my labs my ALT AST is way down. Normal for me is usually in the 200 to 300 range (I think) ALT is 78? I havent had that since hep c treatment (I failed tx treatment twice), AST is 132?...I don't understand these findings Really I think there was a problem with the lab. I was in emergency about what a month ago and these labs are way different...I lost 5 lbs? I got my apetite back and i'm eatting again...I'm thinking there is something wrong with the scale. The doctor said it is a medical mystery...I can't wait to get back to my homestead and compare against my last labs. Truely feeling angry and sick and tired of being sick...it's just a feeling though it'll pass
That's great to hear Mike, thanks for posting it! I was just reading:
Here's the lingering trouble: Patients with liver failure and would-be donors are not distributed evenly around the country. And the nation is divided into 11 transplant regions that have wide variations in patients and available organs, between regions and within them.
A donated liver is offered first to the sickest patients in the local transplant center, and if there's no good match, then to the sickest patients throughout that transplant region. If there's still no good match, the liver can go to someone who's not as sick – rather than to someone sicker in the next transplant region.
Patients can shop around for shorter lines, even get on more than one list, if they have the means to get to a far-away hospital within hours of a liver becoming available. For instance, Apple CEO Steve Jobs' 2009 liver transplant was in Tennessee, where the wait was much shorter than back home in California.
I believe that the research concluded that adding serum sodium to the equation did not improve prognostic value of the MELD which would argue against its inclusion saving any lives.
The fact that we have an organ shortage doesn't necessarily mean that refining or improving the prognostic value of the MELD score would not save lives.
Hypothetically it is possible that the livers we do have are not going to the sickest patients which results in more people dying while waiting for an organ. My point is: the fact that there is an organ shortage doesn't argue against improving/refining the criteria for getting a liver.
As far as your current lab work AST and ALT are of minimal importance. They vary constantly. There just indicate the damage currently being done to your liver by your hepatitis C virus.
As far as the MELD score Mike answered that. There are always new proposals to modify criteria to make the MELD score more fair to all. But this is not something you need to be concerned about. It is best to focus on the next step. Getting your MRI performed and then finding out what the results are. That is plenty believe me. There is no need to worry about other things right now, as the people at UCSF will direct you step by step through the process that all patients must go through to be list for transplant. They have done this for thousands of patients. It is a process and it takes time. Lots of time. Most of us are sick and disabled for years before receiving a liver transplant. Patience is a virtue. The evaluation process to be listed for a liver transplant can take weeks unless it is an emergency. There is no need to rush things. Most of the time liver disease is a slow moving progressive disease that develops of many decades. Fulminate liver failure, very advanced liver disease, life-threaten complication of cirrhosis requiring ICU care and other medical crises are the exception rather than the rule, although UCSF care for many of these patients and they are of the highest priority they may be close to death. Remember only the sickest of the sick get transplants. At least in this part of the country. There are currently over 700 people on the UCSF liver transplant waiting list. They usually perform between 125-150 liver transplants a year. UCSF is currently transplanting patients with MELD scores of 33 or higher.
AFP is a different story. An AFP of 195 ng/mL is concerning. Which is why they schedule you for the MRI. I will not explain it in detail HCC and its implications, as that is your hepatologist job after they see the results of your MRI scan and assess the result along with your AFP. You mention that your AFP "is starting to climb again?
What have been your AFP numbers?
While AFP can be increased by cirrhosis and inflammation without HCC a constantly rising AFP or and AFP in the hundreds is something that needs to be addressed.
When is your MRI scan?
I don't know what type of doctor you have been seeing but it is good you are going to UCSF to get a proper evaluation and diagnosis.
I have been going to UCSF for over 5 years. UCSF has the best liver disease care in this part of the country. They also have the best department for hepatitis care. UCSF is involved in many clinical trials right now for the new all oral treatments. I am in the first all oral trial ever for cirrhotics at UCSF.
If you have your lab work done at UCSF or if it is sent out from UCSF you should sign up for "My Chart" an online application that allows you to see all of your blood test results from anywhere over the Internet. In-house tests are usually available later that day or the next day.
Your future appointments will also be listed there as well.
H HectorSF-I am a "medical mystery"..twice doctors have told me that. 07/15/2010 I was referred to UCSF for transplant eval. I have my medical records on disk, accept I wasn't able to access the imfo...The disk is encripted and my combo wouldn't work so as a result of that I have been digging up my GI medical records. I found some AFP values.
ALPHA 1 FETOPROTEIN
06/17/2005 AFP 3.2
05/15/2007 AFP 66.7
04/26/2010 AFP 427.8
06/01/2010 AFP 636.3
06/07/2010 AFP 832.5
08/05/2010 AFP 857.4
08/11/2011 AFP 404.1
08/18/2010 AFP 688.3
10/12/2010 AFP 274.6
10/11/2010 AFP 57.7
10/24/2010 AFP 44.9
06/16/2011 AFP 523.3
09/13/2011 AFP 492.2
I did have one last AFP level taken about a year ago but I couldn't find the result. I remember it wasn't alarming like this last value.
RE: "UCSF Proper eval and diagnosis" My doctor has not referred me to UCSF. He pushed the TP eval. contact imformation back to me when I gave it to him...I tried. Thats why I'm seriously thinking about changing dr to SF and patiently wait and do what I can in the mean time.
RE: "MRI Imaging" Bluecross Anthem will be calling me back with the date and time of appt. as they need approval for the procedure...thanks mike, howie and randy. You guys are a great bunch of guys!
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