After all these tests and visits - then what? Will I get listed? Who makes that decision?

Who makes the decision about transplantation?

Once the final evaluation at the transplant center is complete, your case is presented to the Selection Committee (made up of hepatologists, transplant nurse coordinators, transplant surgeons, psychiatrists, psychologists, social workers, dietitians, and chaplains — many of whom you will have met) to determine if you meet the criteria for transplant. They typically will discuss your case the week after you have been there. You and your referring provider will receive a letter in the mail discussing the results of that decision.

Candidacy is determined mostly by the following:

• Presence of advanced liver disease which cannot be cured by other treatments
• At least 6 months abstinence from alcohol and illicit substances. The patient must demonstrate convincing evidence that substance use issues have been addressed and can be determined to be of low risk of relapse in the future
• Ceasing any use of any nicotine products
• Stable, clean, and sober support system
• Full understanding of the transplant process
• Ability to demonstrate commitment and compliance to your medical care
• No active infections
• No other medical conditions (heart, lung, or weight issues) that will interfere with the surgery, your recovery or long-term health
• No active cancer, with the exception of some liver cancers

The Selection Committee will then decide and inform you and your referring provider if you are:

Accepted — You have met all of the medical, psychological and social criteria and are ready to be placed on a waiting list when any pending tests are completed.

Deferred — You have some medical and/or psychosocial issues that need to be taken care of (dental work, substance abuse treatment, ceasing nicotine use, improving social support, or further heart testing). Being deferred means that you need to address the concerns brought up during the evaluation before you can be re-considered for acceptance for listing. There is usually a time limit for this to occur. After all concerns are addressed, your referring provider will contact the transplant center to request reconsideration of your case. Your case will be re-discussed at their Selection Committee Conference where members will review how you addressed their concerns and will hopefully recommend you be approved for listing.

Declined — You may have medical or psychosocial support issues that disqualify you from being on the waiting list. Sometimes, it is possible that you can be re-referred at a later date if some of their concerns can be addressed or certain medical conditions improve.

The Wait

If you are accepted for transplantation, your name is placed on the waiting list, according to blood type. It is hard to say how long you will have to wait for a transplant once you are on the list. It could be anywhere from 5 hours to 5 years. The US national wait times for liver transplantation have decreased in recent years.

During the waiting period, you will follow-up regularly with the provider who referred you to the transplant center. The provider will be responsible for your care, checking your blood tests, and reporting to the transplant center if your condition changes. It is always a good idea for you to contact the transplant center as well with any concerns or questions that may be better addressed by them. If you wait more than a year, the transplant center will likely bring you in for a clinic visit to touch base with you, answer any questions, and review the status of your overall health.

How do transplant centers decide who gets transplanted first?

In the United States, the federal government is responsible for regulating the listing of patients and the allocation of organs. The method for determining this is complicated. As part of this process, the Organ Procurement and Transplant Network (OPTN), administered by a non-profit organization, the United Network for Organ Sharing (UNOS), has developed a system for determining which patients waiting for liver transplant should have priority. This system, called the MELD-Na Score (Model for End Stage Liver Disease Sodium Score), is based on statistical formulas that predict which individuals are most likely to die over the next 3 months from their liver disease. The number is calculated by a formula using four lab tests (bilirubin, International Normalized Ratio (INR), creatinine, and sodium) that are routinely checked each time you see your provider for follow-up. These labs tell us how your diseased liver is doing. The MELD-Na usually varies with each lab draw. Lab work needs to be drawn every three months and sometimes more frequently depending upon how sick you are from liver disease. Generally those with the sickest livers (highest MELD-Na scores) will be prioritized. Patients with liver cancers who meet transplant criteria also receive higher priority.

Your Waiting Time

While you wait, continue to take your medications as prescribed. Maximize your health. Follow recommended nutrition, exercise and lose weight if needed. Exercise, walk, and try to keep up some social activities. Keep all doctors' appointments. Make sure your doctor and the transplant center know of any health changes. Though you may feel too sick to be active, you will have to push yourself to keep active; even short walks will help. It is very important not to lose too much muscle mass since the surgery is more risky if you are malnourished. Set up childcare or guardianship, if needed; make plans for your pets, if needed. If you have concerns about your physical limitations and exercise, discuss it with your medical provider. If you notice a change in your health, you need to let your medical provider and the transplant center know as soon as possible.

Notification

When your name has come to the top of the waiting list, a transplant coordinator will notify you by phone/pager to come to the transplant center. Once you are at or near the top of the list, you may need to reside near the transplant center for up to 2-3 months since you will need to be at the transplant center within 6 hours from the time you are called for transplant. The transplant center will let you know if this is the case.