Liver Transplant Waiting List
The United Network for Organ Sharing (UNOS) is the national organization in charge of administering and allocating organs from deceased donors. They use four different criteria to rank the priority of potential organ recipients for liver transplants:
- Urgency of condition – Within each blood type list, people are ranked by urgency of medical condition. This is indicated in general by their MELD score.
- Location – Available organs are allocated within their local region. The United States is divided into 11 regions, each with its own supply and demand. Lahey Hospital & Medical Center is part of UNOS region 1, which includes most of New England.
- Blood type – Within each region, the liver transplant waiting list is divided into four different lists separated by blood group: O, A, B, and AB. The + or- after a blood type is not a factor in liver transplantation so for example, an O+ person can donate to an O- recipient.
- Liver size – Your body size is another consideration in liver allocation. The donor liver has to have an adequate volume for the transplant to be a success. If you are a large person, a small liver will not provide you with sufficient function.
UNOS forbids organ allocation based on any other factors, such as age, sex, race, or socioeconomic status. It is also illegal to purchase a liver or any other organ.
About the MELD Score in Liver Transplantation
In 2002, UNOS implemented a nationwide system for prioritizing patients for liver transplantation. It is called the Model for End Stage Liver Disease, or MELD, and it is based on a very accurate statistical formula that predicts which people are most likely to die in the near future from their liver disease.
The MELD score is determined by using the results of three blood tests (bilirubin, INR, and creatinine) to determine the severity of a person’s liver disease. The score ranges from 6 (normal liver function) to 40 (severe liver disease).
While on the waiting list, each person’s MELD score must be updated according to a schedule determined by UNOS. The score may go up or down over time, depending on the status of the patient’s liver disease. A MELD score may be reassessed weekly, monthly, every three months or annually. The higher the score, the more frequently it will need to be reassessed.
Time spent on the waiting list has not been a factor in liver allocation since the MELD score was introduced. For example, an ill patient with a very high MELD score may be listed and get a liver quickly, “passing” someone who has been on the list for a longer time but has a lower MELD score.
Waiting Time for Liver Transplantation
It is impossible to predict when a liver will become available for transplantation. Patients with higher MELD scores receive liver offers more quickly than patients with lower MELD scores. In general, patients with blood type O or B have the longest wait times, while those with blood type A or AB generally wait a shorter time.
Staying Active on the Liver Transplant Waiting List
In order to remain active on the liver transplant waiting list, it is essential that you understand and fulfill certain responsibilities. These include but are not limited to:
- Keeping all scheduled appointments
- Obtaining laboratory and radiology testing according to the schedule you will be given. This schedule is a UNOS regulation and it is extremely important that you adhere to it. If you do not, you will become ineligible for a liver transplant
- Random drug and alcohol screening
Communication with Our Transplant Center
It is imperative that you or a member of your family contact your liver transplant coordinator or another member of the transplant team regarding any of the following situations:
- Admission to another hospital
- A visit to the Emergency Room
- Diagnosis of an infection of any type
- Any changes in contact information, including address and phone numbers for you and/or your primary contact person
- Any changes in your insurance coverage, including prescription plans
- Your inability to keep any scheduled appointments at the transplant center
It is permissible for patients to be listed at more than one transplant center simultaneously, but certain restrictions apply. UNOS regulations allow you to be listed at more than one transplant center as long as the two centers are not in the same geographic region.
The Liver Transplant Process at Lahey
One of the most exciting calls you can receive while on the waiting list is when the hospital tells you that a liver has become available. This call can come at any time of day or night, and on any day of the week. It is important for you to remain reachable at all times – at work, at home or even on vacation. We recommend that you give the transplant team the phone numbers of close friends and family as well in case you cannot be reached directly. Lahey has 60 minutes to reach you before the liver is made available to the next person on the list.
Liver Transplant Preparation
It is impossible to predict when a liver will become available – so we recommend that you are always prepared to come to the hospital. An overnight bag should always be ready with clothes and items you will need in the hospital. We also recommend that you arrange a transportation plan with family and/or friends.
You will receive instructions from the surgeon regarding the specifics concerning travel to Lahey. Frequently, you will be asked to come in immediately after the phone call. Deceased donor livers will not survive for longer than 12 hours without a blood supply, and the faster it is transplanted into a recipient, the higher the likelihood the transplant will be successful.
If you are unable to reach Lahey within 4 to 6 hours of being called, the liver will be offered to the next person on the waiting list. Should this occur, your position of the waiting list will not be affected.
There is a 1 in 4 chance that the liver will be found to be unsuitable for transplantation when it arrives. This may be due to deterioration during transportation, or it may have been found to have a disease or infection. If this happens, you will be sent home to wait for the next liver. Your position of the waiting list will not be affected.
At the Hospital
At the hospital, your family will be allowed to accompany you in the pre-op area where you will undergo a few preliminary tests to ensure that you are still in good condition to receive the transplant. You will be allowed to spend some time with your family before being transferred to the operating room.
You will be brought into the operating room on a gurney, where the anesthesiologists will place you under general anesthesia. Once you are asleep, the team will insert a tube in your throat that is connected to a machine that will help you breathe (a ventilator). They will also insert a tube (a Foley catheter) into your urethra and into your bladder to allow urine to drain during the long surgery and a nasogastric tube through your nose to drain the contents of your stomach.
Your surgical transplant team will consist of two or more surgeons, two anesthesiologists, and up to four supporting nurses. The surgery can last from 4 to 10 hours, depending on the difficulty of the procedure.
You will have either an L-shaped or a Y-shaped incision on your abdomen that will be closed with staples. You will also have at least 2 drains in the surgical area to allow the fluids that accumulate during recovery to be drained.
Your Hospital Discharge
You will typically be discharged from the hospital about 7 to 10 days after your surgery. You must meet certain criteria prior to discharge including:
- You must be able to get out of bed, walk, eat, and shower on your own
- You must demonstrate understanding of your medication regimen
- Your incisions must be healing normally
- You must have an acceptable blood level of your primary immunosuppressive medication. This will usually be tacromilus (Prograf), but occasionally others are prescribed
- If you are medically but not physically ready for discharge, the transplant team may recommend additional time at a rehabilitation facility close to your home
You will have to come back to the hospital for follow-up tests frequently. If you live more than 1 hour away from Lahey, we can arrange for you to stay at a nearby hotel. This will allow for easy access to the transplant team and will avoid excessive travel.
Liver Transplant Facts and Frequently Asked Questions (FAQs)
A: Liver transplant is a life-saving operation. You will enjoy better health, a longer life expectancy and a better quality of life. The cons include surgical complications, organ rejection or other post-surgery complications, side effects of the immunosuppressive drugs, and medical costs that may not be covered by insurance.
A: First, ask your doctor for a referral to the Lahey Liver Transplant Program. Then make an appointment for an initial consultation. If you and your physicians feel it is appropriate for you to continue, a comprehensive, two-day evaluation will be scheduled. Two weeks after that, the transplant team will meet to review all the information that was gathered and, if there are no outstanding issues, your name will be placed on the waiting list.
A: The United Network for Organ Sharing (UNOS) maintains the waiting list for organ donation.
A: Liver waiting list times can range from weeks to years, depending on a number of factors. The average waiting time in New England for a liver is about 2 to 2½ years.
A: Live liver donors are relatives, friends or acquaintances of the person needing a liver transplant. Living donors must be between 18 and 60 years old, have a compatible blood type and body size as determined by height and weight. Potential donors must have no serious medical conditions such as liver disease, diabetes, heart disease, or cancer.
A: Following a liver transplant, most people are in the hospital for about 7-10 days.
A: You will start taking immunosuppressant medications immediately after surgery. Patients in our transplant program take at least one immunosuppressive medication for the rest of their lives.
A: Absolutely. Most people need at least six months to recover from surgery before they return to work on a full-time basis. Some people choose to return part-time if they are still experiencing fatigue.
A: Yes. You can travel near and far as long as you always have your medication with you.
A: Yes. Following transplant, women have become pregnant and have delivered healthy babies, and men have fathered children. Planning a pregnancy, however, should be carefully discussed with the transplant team.
A: Yes. Everyday sports such as tennis, golf, softball and basketball are not only fun, but also a good way to stay in shape following transplant.
Liver Transplant Recovery After Surgery at Lahey
When you arrive home after your liver transplant, you should begin to do muscle toning exercises and walk 5-10 minutes each day. You should slowly increase the time each week to enhance overall recovery. Lahey will arrange for a nurse from the Visiting Nurse Association (VNA) in your location to visit you at home for the first three weeks after your discharge.
Visiting nurses are the eyes and ears of the transplant team after your discharge. They will check your medications, vital signs, incisions, drains and will also look for signs of infection. Depending on your condition, you may be visited daily or three times per week. The VNA visits will continue until you are healthy enough to take care of yourself.
When a foreign object enters the body, the immune system recognizes it as unfamiliar and will try to destroy it in order to protect the body. Your body will view your transplanted liver as a foreign object and will try to destroy it. The process is called rejection, and to combat it, you will have to take several medications called immunosuppressants that will prevent your immune system from attacking your new liver.
Your first dose of immunosuppressants will take place at the time of your surgery, and you will need to take them for as long as your transplanted liver is functioning within your body. Some of the medications have side effects, and you may have to take additional medications to counteract these unwanted effects.
Our post-transplant nurse coordinator and our transplant pharmacist will educate you on all aspects of your medications. They will give you a card that describes the medicines you need to take as well as their side effects, and the time, frequency and amount of each that you should take.
Remember that after you leave the hospital and are finished with VNA visits, taking your medications correctly will be your responsibility. You should call the transplant office if you miss a medication dose or have other concerns.
Liver Transplant Recovery Time
The following can generally be expected during your recovery:
- In 1 month – The staples will be removed from the incision area at the transplant center.
- In 2 months – You may lift up to 15 pounds (babies, small pets, groceries.)
- In 2 1/2 months – Your bile tube and drainage tubes will be removed during a clinic visit.
- In 3 months – You may begin jogging.
- In 3-6 months – Your liver incisions will have healed. You may also go back to work; some people choose to return part time if still experiencing fatigue.
- In 1 year – You may begin playing sports and weightlifting. However, you should get the transplant team’s approval before engaging in these activities.