My fiance was diagnosed with end stage liver due to Hep c in April of 2008 has had esophagel varices banded and the tips procedure. He was getting disoriented from the disease every 60 days but this time it was within one week apart.
My first question is what is the typical life expectancy for someone with this problem without the transplant. He is on the list. Also if he gets medicaid to transfer his healthcare to Colorado from California will he stay on the transplant list in the same position? I am thinking they give livers to who needs them the most and if they find a match not based on a first come first serve basis, is this true?
Are the hepatic ecephalopothy or episodes of disorientation, commonly become more frequent and more severe? He is on a very disciplined diet low on protien and salt also restricted fluid intake.
Hi there; I’m not especially familiar with the nuances of transplant; others here including Mikesimon can probably provide much more definitive information. While UNOS does provide organs to those most in need, there are also differences in regional availability of organs. You might want to discuss this question with his TP facility, or possibly contact UNOS directly at (804) 782-4876.
I doubt anyone including doctors can offer much information about life expectancy for ESLD patients, except for very broad ideas; it’s quite difficult to predict how long someone will live with this.
I hope he is currently taking Lactulose or similar to help control his encephalopathy; if he is, when was the last time his dose was adjusted or reviewed?
Thank you for your comments, yest he is on the lactulose and he is in the hospital right now so they will be reviewing his doses. I read about the child score I just don't have some of the levels I will request them when I go to the hospital.
You asked: "Also if he gets medicaid to transfer his healthcare to Colorado from California will he stay on the transplant list in the same position?"
It depends on his MELD score in relation to the MELD scores of those waiting in the Colorado region. Time spent waiting is not considered at all in liver allocation - there is no advantage to being first over being last. It was considered when I was transplanted in 2000 but not since the adoption of the MELD Score.
I think the Colorado region is comprised of Colorado, Nebraska, Kansas and Wyoming.
The UNOS site states that 3,984 people are waiting for a liver in the California region as of 2/27/2009.
As of 2/27/200 there are 886 people waiting for a liver in the Colorado region. And then you need to factor in the number of livers that will likely be available in the respective regions and your Husband's blood type to get some vague idea of how long he might wait. I suspect that a reputable transplant physician can give you a ballpark idea.
The MELD score is intended to rank patients in respect to life expectancy. If you know his MELD score you should get some idea but, as Bill said, no one really knows how long a patient will live. You will get some idea however.
The frequency and severity of encephalopathic episodes depends on liver damage and management. My experience is that some people seem to manage this side effect better than others but I have no idea why that is. I would expect that if he is optimally managed now, then if his liver would deteriorate the episodes may become more frequent and perhaps more dramatic. That is just a guess because I don't know a lot about encephalopathy.
I think the best way to get a rough idea is to compare each involved transplant centers avg meld scores at the time of transplants. You would be better off being listed at one with a lower MELD score at transplant. The higher the donor shortage in one region will drive up transplant centers patient MELD scores at transplant. UNOS attempts to achieve parity across all regions but it is a nearly impossible task because of geographical, population , and location, size, and number of transplant centers. With a highly transient work force causing population shifts I would imagine the task becomes even harder .
Having had a TIPS done is problematic in this setting as it can increase the likelihood for encephalopathic episodes. You mentioned protein restriction. Perhaps a change in the amount alowed will help. Your new team will apprise you of this if its not settled before you move. Until then, you may want to use more vegetable sources for your protein intake. While all protein can result in toxin buildup, vegetables contain more fiber and do not spend as much time in the gut which can result in a reduction in the amount of toxins absorbed and released into the bloodstream. Medications can trigger episodes quite easily in many with advanced cirrhosis so vigilant care needs to be given in that area as well. Encephalopathy has other treatments besides lactulose which may be considered by a doctor. I'm sure they will find the proper meds and/or dosages for your husband either where you are or with a new team in CO. At this stage of the game encephalopathy is always reversible . There are 2 hospitals last I checked that could perform liver tp in Colorado. The larger hospital has a very respected hepatology/transplant program. The first liver transplant in the world was done there so they've had the schematic the longest. ;). Good luck to both of you.
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