The Pocket Guide for Transplant Candidates

The Pocket Guide for Transplant Candidates

Liver transplantation is performed in most major cities in the United States. It is regarded as one of the most difficult operations that can be performed, and its success is highly dependent on the surgeon’s experience and the medical team involved, including all support personnel. There must be a deep commitment by the hospital and the medical staff to have a successful outcome.

By: Howard P. Monsour JR., M.D.

Most importantly, the patient must be committed to the process, with the understanding that they will be taking multiple medications for the rest of their life, which often will be interrupted by doctor’s visits, hospitalizations for liver biopsies, yearly evaluations, and possible complications. Liver transplantation is a lifesaving procedure, and it can restore years of productivity and enjoyment to life when the outcome is what we expect.

Here are some of the most commonly asked questions concerning liver transplantation. The answers and information given will help you understand the process and consequences of liver transplantation.

When Should You Think About Transplant?

From the first time a diagnosis of liver disease is made, the physician must consider the possibility that a "new liver" may at some point be necessary. The laboratory tests and physical exam will determine the patient’s prognosis. The current status or stage of liver disease will be assessed. Most of the time it will be quite easy to determine how well the liver is functioning.

This determination will depend on three main laboratory values; Serum Bilirubin, which reflects the liver’s ability to produce and secrete bile; Prothrombin Time, a measure of the coagulation of the blood by proteins produced in the liver; and Albumin Level, a protein also produced by the liver. Changes in these three laboratory values will determine the synthetic function that the liver is capable of. Once they are abnormal, at least 50 to 70 percent of the liver is nonfunctional. Either it has been replaced with scar tissue or the cells have been damaged.

Other factors include clinical symptoms of advanced liver disease, which are the presence of ascites (fluid in the stomach), a history of bleeding varices (esophageal or gastric veins), and, at times, encephalopathy (inability of the brain to process normal thoughts, concentration and reasoning due to build-up of blood chemicals normally processed by the liver). The key factor in liver transplantation is early referral. It is better to be evaluated at a transplant center and told that you are too early rather than too late!

Are There Age Limits To Liver Transplantation?

No. Newborns to patients in their seventies have been transplanted. Your numeric age isn’t as important as your physiological age. We all know people who are fifty, but look and act ninety, and vice versa. If you have problems with other organ systems, especially your heart and lungs, you may be denied listing for transplant. In essence, the transplant team will assess your overall "survival ability."

You can become too sick to get a transplant; for example, the chance of survival is so low that it would be better to give the liver to someone else who has a better chance. You can help yourself by remaining active and refraining from smoking. Choose as healthy a lifestyle as possible, given the extent of your liver disease. It is not your chronological age; it’s your overall state of health that is important.

What Is The Success Rate Of Liver Transplantation?

In general terms, the overall success rate should be in the 80 percent plus range. Some diseases like Primary Biliary Cirrhosis (PBC) have a better success rate than others. A person with fulminate acute liver failure may have a success rate in the 60 percent range. You must be careful when reviewing the success rates of various programs. Some will make their numbers look better by not transplanting fulminate failure patients or by selecting only healthy patients. Newer programs will have low numbers and may tout 100 percent success rates. The largest and best programs take all patients and deal with them fairly. You can look up the survival numbers on the Web, but remember that some of the largest and best programs will take the sickest patients, and their numbers may be lower, but they have vast experience.

What Is The Listing Process?

You must first go through an evaluation process that usually will take several days. It’s a chance for you to get to understand what is involved on all levels - physically, emotionally and financially. Your family plays an important supporting role, and the transplant team also will assess this. You can’t be an island. You must understand and accept that you will need constant monitoring and medications for life.

The transplant team not only will be assessing your health, but your emotional stability and your support system as well. This will involve medical and psychological testing. At the end of the evaluation, the transplant team may set certain requirements that must be fulfilled before you are actually listed. For instance, if you have a history of substance abuse, they may require that you attend AA meetings or substance abuse counseling.

The listing or evaluation process works both ways. It is your chance to get to know the program and the expectations that will be required of you, and it’s the transplant team’s chance to get to know you. Remember that they are in control, and you must meet the criteria before you will be listed. Do whatever they tell you to do. Your life depends on it.

What Is The Waiting Period?

In most centers the wait can be from one to two years. This alone is why it is so important to be listed early.

Can You Be Listed In More Than One Place?

No. But if one center turns you down, you can go to another center for evaluation if your insurance permits it.

Are All Transplant Centers The Same?

Most centers that perform more than 50 transplants a year are quite similar if they have been in existence for more than a few years. The surgical and medical skills should be the same in the larger programs. Differences, however, may exist in the teams’ personalities.

These may reflect regional differences and local culture. Also, some centers may be more conservative with their listing criteria — shying away from older or sicker patients.

Some may have different policies with patients who have liver disease from alcohol or they may have different substance abuse policies. Although the larger centers are similar in generalities, the specifics may differ.

How Do I Choose A Transplant Center?

Nowadays, unless you can pay for the transplant yourself, your insurance company will do the choosing for you. This doesn’t mean that you do not have any say. Exceptions can be made. If your family support is in Houston, but your insurance says Dallas, an appeal can be made, and in many cases it may be approved. Your physician can help you if this is the case.

How Long Will I Be In The Hospital?

The general rule is not to tell the patient a number that is too small. It’s better for patient morale to "get out" one week early than one week late. But in general, and I mean in general, the rules of three apply. Three days in the ICU, three weeks in the hospital, and three months until you go back to work.

A lot depends on how sick you are at the time of transplantation. With longer waiting periods, patients are "in general" sicker today when their donor liver becomes available. Also, remember what was said earlier; maintain a healthy lifestyle while waiting; for instance, smokers fare worse than non-smokers.

What Liver Is Right For Me?

One that works! Surprisingly, the body is much more accepting of a liver than other organs such as a kidney or a heart. A donor liver will be selected depending on your blood type and size. It may be one of the opposite sex, or a different race. The age of the donor also makes little difference. Some programs offer a living-related donor program. This is where the living donor will offer part of his liver to another family member if a match can be made. Talk with your transplant center about this option.

What Are The Side Effects Of The Anti-Rejection Medication?

There are many. These "life-saving" medications may come with a price and not just a monetary one. High blood pressure, high blood sugar, kidney problems and weight gain, to name a few.

Most important, these medications will suppress your immune system. In the first few months they will be given in high doses to help your body become adjusted to your liver. This increases the risk of infection.

Your transplant team will make you aware of these and other possible side effects and will instruct you appropriately. Many of these side effects will be handled by giving you other medications to control these side effects. You may be required to take a handful of pills a day. You must take them. It really is a small price to pay for your life.

Will The Disease Come Back In My New Liver?

Viral hepatitis B and C can come back and reinfect the new liver. Actually, the virus never left; it was in your body and reinfects the new liver. Most transplant centers are working with antiviral medications either before the transplant or soon after to try to prevent infection from destroying the new liver.

In some cases the new liver can become incapacitated at an accelerated pace. Fortunately, this is rare. With new antiviral medications, liver damage can be prevented in most cases. Newer and more effective medications are being used all the time.

Some other diseases, most of them the autoimmune variety, have been reported to reoccur rarely. These include Primary Biliary Cirrhosis (PBC), Primary Sclerosing Cholangitis (PCS), and Autoimmune Hepatitis Type I. Re-transplantation has been necessary in some of these cases when cirrhosis again returns to the donor liver.

Conclusion

"What can you do while waiting?" Even if your liver disease is of the mild variety, you can help everyone with a liver condition by getting involved in a support group or other volunteer organization. You can be a valuable resource to those with liver disease who need to hear the experiences of "like" individuals.

You can help on the political front by writing to your local governmental representative when legislation is being considered to help fund research and support programs for liver disease.

Most important, make it a goal to "sign-up" 20 or more people a year as potential donors. Each year, thousands of people die waiting for organs. Don’t let it be one of your loved ones or even you.