Re: PSC & MELD

[Guest guest]

If your transplant team believes your case qualifies for an exception, they may submit information to a review board and request a higher score. The review board will consider the medical facts and determine whether or not to grant a higher score."

Dear Ian,

[i am also posting this to the psc group and for those of you who have questions or stories to share, please, email me privately. I am not participating in the group currently as I do not have enough energy to be of any real value at this point. Thanks for understanding.]

Thank you for sharing your story. Yes, DVT's is certainly a clotting disorder that I'm referring to. I have had many DVT's and I've had pulmonary embolisms (clots in my lung). Any disorder that requires blood thinners is going to cause an increase in INR and therefore a patient's MELD score.

My beef with the MELD system is this...what you say is true to the degree that it is up to the transplant team to request exception points. However, this portion of the MELD system is too subjective and costs patients their lives. This is how it works -- someone on the transplant team writes a letter explaining the extraordinary circumstances of a patient with a low MELD score, requesting additional points. Then, someone at UNOS reads the letter, interprets what is written and makes a decision. Problem is this, it depends on so many things like how well the letter is written (wording and such), if it contains ALL of the data that may prove exception points are necessary, and most certainly those things can depend on how the coordinator (or person writing the request) feels about or connects with the patient. On the receiving end you have the same type of variables...how is the reader feeling that day, are they comprehending all that they are reading, do they feel that exception points should ever be awarded, etc.

The purpose of the MELD system was to level the playing field, removing the human factor, because the prior system depended upon a doctor referring a patient for transplant - period. Some doctors would list them long before they were sick enough to constitute a transplant but knew that in the long run that was the only "cure". Other doctors would never list patients in need due to ignorance regarding a disease, or transplant or because they didn't feel that the patient was worthy of a transplant. All of these things put patient's lives in the hands of doctors and we found that leaving the system open to so much subjectivity were costing people their lives. With the MELD system in place the majority of patients are well represented and all subjectivity has been removed. However, I have been told by the transplant team at (in St. Louis), University of NE (Omaha) and Cleveland Clinic Foundation that the MELD system does not give a true picture of how sick a PSC or PBC patient is, due to the nature of the disease and other risk factors. That right there leaves us with a disadvantage, but when you factor in the subjectivity of the letter writing for exception points for these patients we see an even larger gap between the average end stage liver disease patient and PSCers/PBCers. Now, to complicate things even further you have those who have a PSC/PBC and a clotting disorder.

The MELD system, we're told, does not give accurate representation to these patients, but they (we) are forced to live with that if a wonderful exception letter is not written and interpreted properly, however, when there comes a day that a high INR causes the MELD score to rise, it is discounted as 'not a true reflection' of the patient's condition. Why is it acceptable for the MELD score to apply to us when it's not giving an accurate picture and we could die, but it's OK to disregard it when it works to the advantage of the patient. If a patient is playing by the rules set forth by UNOS, then they should be allowed the same benefits. The MELD score is calculated by the values of creatinine, bilirubin and INR -- they set the equation so why does any transplant team have the right to disregard it or manipulate it? I don't believe they have that right. UNOS set the standards and we're going to live by those standards then we should be able to live by those standards no matter what the result.

So, as you can see, it is my goal to force them to set a protocol on how to deal with patients who MUST be on anticoagulants for life (like myself). I believe you cannot disregard the INR of a patient because they are on blood thinners if they must ALWAYS be on them. I am one of those patients. The hemotologist told the transplant team that if they take me off of thinners they will kill me. If I must always be on them it is not a fair assessment to calculate my MELD score, and make it count, when I am completely off of them. That will NEVER be a true representation of where I stand as a patient.

I'm sorry this has been so long, but I feel it's important that I explain my stand point so others like me can join in the fight, or at least make sure that I know who else I am fighting for. Thank you so much for taking the time to write me and to get a better understanding of what it is I'm looking for in all of this.

Sincerely,

(MO)

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