What We Learned

Information is critical to everything—every decision, every treatment plan, every projection, every hope—has to be based in accurate and relevant information.

The doctors will not usually provide all the information you need unless you ask for it specifically. You have to know what questions to ask and what sequence to ask them in. You have to know which doctors are likely to have the correct answers for you.
The most important thing to understand is the concept of the MELD score and how it is used by the transplant centers. MELD is short for Model for End Stage Liver Disease. This scoring mechanism has been in use since February 27, 2002, and knowing what it is, how it is calculated, and what it means is crucial. It is calculated by evaluating the patient’s bilirubin (how effectively the liver excretes bile), creatine (used as a measurement of kidney function), and the INR (International Normalized Ratio for prothrombin time—the liver’s ability to make blood clotting factors). Those terms are a bit daunting to those of us who skipped medical school, but understanding them –and understanding them fully—is necessary to achieving the goal you are seeking.

The MELD score is the transplant centers’ justification for everything that they do or don’t do. Be aware that there are different MELD score criteria in different transplant centers, just as there are different evaluation criteria in each and every transplant center. They are not interconnected and most centers give the impression that they are not fully aware of what their peers are doing with regard to the MELD scores and evaluation criteria. “We only know what WE do,” one transplant team member told me.
Application of the MELD score criteria is more subjective than most people think. It is possible to add points to the score in order to qualify a certain individual—read that as “padding the score” when they run into a patient that they truly want to save, such as a personal friend, family member of a staff member, or a patient that they have a vested interest in. They will all deny this, but I have seen it happen and I believe it to be true.

The transplant centers run their operations on a statistical basis. They accept patients who have a greater probability of survival; that accentuates their success and longevity rate, which in turn helps with their reputation management, funding, and standing in the transplant community. Who would not want to go to a center with a 92% success rate rather than one with an 86% success rate? Those numbers sound impressive, but it is quite likely that the center with the higher number is far more discriminating and selective about whom they accept as a patient than the center with the lower number. The center with the lower number may, in fact, be trying to help more people who are in need of their services. They may lose more due to other health factors, but the transplant methodology itself is so standardized that the surgical success rate in patients with similar health profiles is usually the same no matter where you go.
Make sure you have at least one doctor you can rely on to give you the straight story. That will usually be your gastroenterologist; he has probably been treating the patient for a while and he is the one who has to recommend your loved one to a transplant center. A situation came up once where my gastro doctor was in disagreement with a medication prescribed by a transplant doctor. I trusted both physicians and I asked the transplant doctor why the two of them did not agree; he gave me this point for consideration: “Your gastroenterologist is a great physician and I have known him for many years. However, he treats many people with all sorts of internal issues. Only about 10% of his patients have liver disease like Mary does. On the other hand, 100% of my patients have liver disease….” That made sense to me and I went with the transplant doctor’s advice. That advice turned out to be wrong and created a huge problem and a major setback for us. My lesson in this was that my gastro doctor knew Mary better than anyone else who was treating her and had a more comprehensive vantage point when looking at her overall health picture. The transplant doctor saw her only as a “patient du-jour” and was prescribing medications from a formulaic approach rather than treating her as an individual with her own unique set of issues and problems. Do not rely on the experts exclusively—temper and balance their decisions with those of someone who knows and cares for the patient as a person, someone with a longer history of interaction and treatment for the person you are trying to save.

It is also crucial to know certain facts and sequence them in a specific order. First, alcoholism and drug addiction are a disease. I used to think it was all a matter of will power and nothing else—that if a person wanted to make changes in their life, such as stopping alcohol and/or drug abuse, all they needed was the determination to do it. I have learned, much to my regret, that it is not that simple. It is my belief that all of this starts as a psychological issue, then slowly over time becomes a physiological issue as well. There is a line that separates the emotional from the physical disease and, once that line is crossed, any potential solution becomes exponentially more difficult and problematic. In many cases the patient loses the capacity to think rationally and it falls to you to make the necessary assessments and draw the correct conclusions. A thankless task, to be sure, but one that must be done by someone with a clear head and enough background information to choose the proper path.

The first priority is to make the decision to do all that can be done to save the life of the patient—your husband, your child, your wife, your dad or mom—and commit yourself to that effort. It will be a long and difficult struggle and you must prepare yourself for that. It will get harder every day; it will never get easier until the moment they wheel your loved one into surgery. A phrase you hear a lot at the transplant center is “caregiver burnout”. Prepare yourself for that scenario when it develops. Notice that I say when, not if. Eventually the fatigue and stress will take its toll and you will find yourself on the verge of giving up. Know that from the beginning and be ready for that ugly demon when it shows itself. Then banish it back to the hell from whence it came, pull up your Big Boy britches, and get on with what you have to do. Even then the road remains long and bumpy; the odds are that it will never truly be smooth.
The second priority is to gather as much information as you can about treatment options that will buy you the time to navigate the transplant maze and figure out how to make the process work for your unique situation. Learn what medications are used to control the ammonia level, appetite and metabolism, fluid retention, and so on. Become a subject matter expert so you can discuss the issues with the doctors intelligently. Get used to asking questions and getting answers.

Third, make your gastroenterologist your best friend. Write him letters asking his help in saving the patient’s life, tell him how dedicated you are to this effort and how hard and tricky you know the process will be. Ask for his help. Not many people make a lobbying effort with the doctor; he will be impressed that you are willing to become a strong advocate and are committed to sticking with it. Get his advice about the transplant centers he works with, then do your own research about them also.
Fourth, assemble all the relevant data you have—-
1) What is the patient’s MELD score? What is the MELD score threshold for the transplant center you are working with?
2) What is the patient’s overall health status—is he or she malnourished, what does the patient weigh, are there blood or kidney issues, what is the mental condition of the patient—are they lucid or are they too confused to assist in their own health plan?
3) Who can you rely on for help as the going gets tougher? Are there family members to assist you? Can you afford outside help, such as hired caregiver?
4) Explore your insurance coverage for long term care, skilled nursing coverage, long term acute care/rehab and be aware of how much allotment you have for these options.
5) Initiate contact with whatever transplant center your gastroenterologist has referred you to. Schedule the initial meeting for as soon as possible; when you get to that meeting press for an evaluation appointment as quickly as it can be scheduled. Determine what accompanying criteria the transplant folks want to satisfy their evaluation process—some will require a dental exam, others will not. Some will want a TB test, mammogram for women, colonoscopy for anyone over fifty, and so on. Be aware that all transplant centers are different and each has their own set of rules.
6) If it appears that the MELD score you are working with is too low to be considered for immediate surgery, continue with the process –but also start exploring other transplant centers in other parts of the country. Many will operate on patients with a lower score due to the availability of organs in their region (the centers in Texas usually will not operate on anyone with a score lower than 29 or 31, while transplant centers in Georgia and Florida will accept a patient with a score of 23). It may seem like a lot of effort to take a very sick family member to an out of state facility, but it is not nearly as hard as making that drive to the cemetery if you cannot get them transplanted.
7) Start all this immediately. Do not wait; do not hesitate. Begin right now.