Living Donor Liver Transplant HF#6839

Thinking about Live Liver Donation

 

This handout explains the process to persons who are thinking about donating part of their livers.  You will learn about the reasons for living donation, the assessment process, the operation, post-operative care, and the alternatives, benefits, and risks of this surgery.  Please take the time to read this handout carefully.  If you are interested in live liver donation, please contact the transplant office at (608) 261-1996 or the nurse transplant coordinator working with your intended recipient. 

 

With live liver donation, a piece of a healthy person’s liver is transplanted into the recipient.  This can be done because the liver regenerates itself in both the donor and recipient after the transplant.  Both the donated segment and the remaining section of the donor liver will grow to normal size within weeks.

 

 

There is a severe shortage of organs for transplant.  This means that the wait for a liver transplant can be many years.  Patients may die while waiting for an organ.  The UW Transplant Program has long been a leader in trying to find new ways to increase the number of good organs that can be used for transplant.  Living liver donation is an option that can decrease the waiting time for a patient in need of a liver transplant.

 

Who can receive a liver from a live donor?

 

Patients in need of a liver transplant go through their own medical, surgical, and social evaluation to find out if they can receive a transplant.  If they can receive a transplant, they are placed on the deceased donor waiting list.  Once patients are on the waiting list they can begin to consider live donation as an option.

 

Living donation may not be an option for all patients in need of a liver transplant.  The transplant team make this decision.  If living donation is an option, the patient in need of the transplant and the potential donor must agree to a living donation.

 

The donor work-up does not start until the recipient has been listed for deceased donation.  A patient who has a potential living donor remains active on the waiting list while the living donor work-up is being done.  Their place on the waiting list is not affected. 

 

Who can be a Living Donor?

 

• A living donor can be related or un-related and must have an established relationshi with the intended recipient.
• A donor is most often between 21 and 55 years of age.  A donor must be old enough to provide informed consent and young enough to have a healthy liver. Donors between 18 - 20 years of age may be considered on a case by case basis.
• The donor’s main goal should be to help the recipient.  
• Living donation must be a coluntary choice without outside pressure, coercion, or material gain.
• The donor must be in excellent physical and emotional health.  The donor must be free of major health issues.
• The donor must have a blood type that is compatible with the recipient’s blood type.
• The donor cannot have a body mass index over 35.
• A donor cannot have cancer.  
• A donor cannot have any active infections. 
• The donor must have normal or near normal liver function and have no history of any liver disease.
• Anatomical differences occur among persons.  The donor’s liver must have a pattern of blood supply and a distribution of bile ducts that are suitable for transplant.
• The donor must have family or friends that can provide support before, during, and after the surgery. 
• The donor must be able to plan for up to three months off from work.
• The donor must be able to express understanding of the risks of living liver donation.
• A donor is strongly encouraged to have his or her own health insurance.  Lack of health insurance may disqualify a person from being considered as a donor. A donor is required to have his or her own health insurance.  
• Costs related to donating are billed to the recipient’s insurance.  Any questions about the financial aspects of donating can be direct to the transplant financial coordinator at (608) 263-1505. 
• Keep in mind that not all patients that need liver transpant can receive a live donor liver, so this will also need tobe assessed.

 

What are some things to think about?

 

Donor safety is the most important issue during the assessment.  Donation will not be offered if the medical and surgical team believes that the chance for harm to the donor outweighs the benefits to the recipient.

 

A different group of medical providers from those caring for the recipient evaluates the donor in order to avoid conflict of interest.  Donors are assigned a donor advocate team, whose members are responsible for ensuring their interests are being met, and that they understand the risks and benefits of living donation.

 

Donors need to be aware that previously undiagnosed medical conditions may be found during their medical assessment.  A new diagnosis could affect the ability to obtain insurance and/or cause emotional distress.

 

The donor's medical work-up, and every aspect of the donation process, is part of their personal, confidential medical record.  This means that the recipient cannot be told by the transplant team anything about the work-up - including if the donor decides to walk away from the donation.

 

As the donor's work up progresses and they better understand the donation process, they may decide donation is not something they can do.  The transplant team can help donors walk away at any time from the donation process.

 

What are the benefits of living donation?

 

Live liver donation offers several advantages to the recipient.  This is most likely why you are reading this now.  You may be hoping to help your loved one improve their health with a high quality organ.  With living donation the transplant can be done at the best time, before the recipient’s health worsens. It can decrease the time they wait for a new liver.  

 

What are the costs for the donor?

 

Although there is no cost for the medical evaluation or living donation itself, donors will have some costs.  Costs to the donor include:

• Time off work.
• Non-hospital lodging costs, if needed, thought there is a grant available that may help offset these costs.
• Childcare costs.
• Transportation for visits, though there is a grant available that may help offset these costs.

Donors that live in Wisconsin may subtract up to $10,000 from heir federal adjusted gross income for these costs on their state income tax form. Some employers, including the federal government and the state of Wisconsin, may offer 30 days paid leave to living organ donors.

 

Are outcomes the same with a live donor liver versus a deceased donor liver?

 

Outcomes for the patient who receive a live donor liver are similiar to the outcomes for the patient who receives a deceased donor liver.  But, there is an increased risk of surgical complicatons for patients who receive part of a liver from a live donor.  Most complications can be treated.  However, there is a risk that complications will lead to graft loss or death.  Medical complications such as rejection or disease recurrence, are not more or less common for patients that receive a live donor liver.  However, they could also lead to graft loss or death.

 

Living Donor Evaluation

 

Step one: Contact the transplant office.

 

Call the liver transplant office at (608) 261-1996.  You can also call the nurse transplant coordinator working with the intended recipient. 

 

The first step is to make sure the intended recipient is able to get a live donor liver.

 

Blood type (ABO) compatibility must be known before any other testing is done.  The transplant office can help to get your blood type if needed.

 

Then a nurse transplant coordinator will get some basic health information from you and review it with a surgeon.  It is the donor’s responsibility to submit an honest and complete health history to the transplant team. 

 

Your general health maintenance exams must be up to date.  This includes things such as a recent physical from your primary care doctor, any dental work, PAP smears and mammography for females, PSA testing for males, and colonoscopy as needed.  Contact your primary care doctor to ensure your tests are up to date.

 

The transplant coordinator will inform you of next steps.

 

Step two: Work-up testing

 

The team assessing the donor is focused on protecting the donor’s interests and well being.  The screening tests are planned by the transplant office.  You will have a nurse transplant coordinator that will help guide you through the work-up and answer any questions that you may have. 

 

The donor work-up can be complicated.  There are many steps.  It may take days, weeks, or sometimes months to complete all of the needed tests and to confirm that living liver donation is a fitting and safe option for the donor and the recipient. 

 

Testing is done in a step-wise approach to try to avoid donors having tests done that are not needed. 

 

General health maintenance and cancer screening tests should be completed through your primary care doctor.  This includes things such as dental work, PAP/pelvic exams and mammography for females, PSA screening for men, colonoscopy screening if needed.  We prefer to have this testing completed before you come for your evaluation visit.

 

The remainder of your evalution testing will be done at the UW Hospital.  In general, we attempt to get all of the testing done in two to three visits, but certainly more time may be needed.  We try to allow for a one to two week reflection period between each visit.  These visits will include the following:

 

1. A clinic visit with a liver transplant surgeon to discuss the surgery in detail.  The surgeon will discuss risks and benefits of living donation, perform a physical exam, and review the donor’s history.

 

2. Blood tests are done to confirm normal liver function and test for several viral diseases including but not limited to Hepatitis B and C, HIV, and syphilis.  Please note that some viruses are reportable by law to the Public Health Department.  You may be contacted by Public Health if you have tested positive for these viruses.

 

3. You will be assigned to a donor advocate team.  Each member of the team will help you to better understand the risks and benefits of donation and ensure you are making an informed choice.  You will meet with each member of team separately.  This includes:

 

a. Social worker - will cover the effects on family, work, finances, and  mood.  The social worker will also discuss how to plan and prepare for recovery.

 

b. Live donor advocate – talks with you about the decision to be an organ donor, assesses whether you feel under pressure to donate, and whether you understand potential risks as well as benefits. The advocate can also help you walk away from donation if it doesn’t feel right. At our center, the living donor advocate is also the social worker.

c. Health psychologist- will meet with the donor to ensure that the donor is prepared emotionally and mentally for the surgery.

d. Transplant coordinator – is a nurse that helps guide you through the donation process. Also helps to explain the risks and benefits to you, and ensure you are making an informed choice.

e. Internal medicine physician- this is a doctor that is not part of the transplant team. He or she will do a physical exam and help to make sure it is safe for you to donate.

 

4. A CAT scan (or CT) is done.  This is a special x-ray that makes detailed pictures of internal organs and bones.  It uses a computer to create the images.  The CT is very useful tool that helps the doctors look closely at certain sites. This helps to get a map of your bile ducts to help guide the surgeons.  Images obtained in the CT scan help the transplant team decide if the donor’s anatomy is suitable for transplant surgery.

 

5. You will have an electrocardiogram and a chest x-ray to confirm normal heart and lung function. 

 

6. You will meet with a dietician to review any diet or nutritional needs or concerns related to donation.

 

7. A clinic visit with a hepatologist (a doctor whose focus is liver disease). The doctor will review the donor’s health history to ensure it is safe for the donor to give part of the liver.  He will also discuss the medical risks that can go with a live liver donation. Sometimes, this doctor will suggest that more testing needs to be doneAn echocardiogram (ultrasound of your heart) is done.  This is a safe and painless way to view the heart for problems.  Depending on the donor’s history, more heart testing may be needed.  This testing may include an exercise stress test

 

8. A liver biopsy may be done to see if the liver tissue is healthy.  During a liver biopsy, a small piece of tissue is removed from the liver.  It is checked under a microscope for signs of disease.  The biopsy takes only a few minutes, but the donor remains in the hospital for 4 hours after the test.  The transplant team will provide more information to help prepare the donor for the biopsy. 

 

9. There will be a pre-anesthesia screening visit to review the medical testing and to assess the donor’s risks of getting anesthesia. 

 

 

 

What if the tests are abnormal?

 

If there is a concern with the testing, the donor will be informed and the work-up is stopped.  The results of the tests done during the work-up are sent to the donor’s home doctor with a request that he or she follows up on these tests.  Some abnormal findings can be treated, and after treatment, the work-up can be restarted.

 

It is the transplant team’s job to be careful about any would-be risks to the donor.  The team may decide it is not possible for a donor to proceed for a number of reasons.  If this happens, the reason is discussed with the donor in detail.

 

Can I change my mind about being a donor?

 

Some donors may decide that going ahead with living donation is not a good choice for them after starting the assessment.  Donors are supported in the decision they make.  At any stage, the donor may decide that they do not want to proceed with liver donation. 

 

Donors are given a confidential chance to walk away from live liver donation.  The reason for no longer being a donor will not be shared with the recipient.  Donors may change their minds because of medical, social, or personal reasons.  This information is not given to the recipient. 

 

Donors must be in direct contact with us about questions or concerns about their assessments.  We will not discuss information or test results with third parties (family members, friends, recipients, etc) unless we have the okay to do so. 

 

What other resource do you offer?

 

We offer a mentor program that links people, by phone, who have already donated an organ with those who are considering donation.  We believe our donors know better than anyone what donation is actually like.  They can be a valuable source of support, encouragement, and information for those going through the process.

 

What are some of the main things to keep in mind while going through the evaluation?

 

There is a risk of transmitting infections via organ donation.  Donors should report any fever, flu-like illness, or neurological symptoms right away.  If a donor has an active infection, he should not donate part of the liver because this illness could be given to the recipient.  To lessen the risk of disease transmission we do blood tests to check for infections.

Donors should also

• Take steps to avoid disease transmission through sexual contact by using condoms.
• Avoid being bitten by mosquitoes, which could transmit the West Nile virus infection.  The donor needs to wear long sleeve shirts and pants and use mosquito repellant. 

 

Avoid alcohol completely for 4 weeks before surgery and for at least 8 weeks after the surgery. Alcohol is toxic to the liver.  It is important that the liver be in the best condition before and after surgery. 

 

Stop smoking: Smoking can lead to blood clots after surgery.  As a result, we strongly advise donors to quit for at least one month before donation.

 

 

Stop birth control pills or hormone replacement medicine.  These can lead to blood clots after surgery.  We ask women using any form of hormonal birth control or hormone replacement therapy to stop this medicine when the evaluation begins.  Use two alternative forms of birth control (such as condoms and spermicide).  You can restart hormonal birth control pills or hormone replacement therapy 4 to 6 weeks after donation.   

 

Step three: Schedule the surgery

 

If the evaluation is satisfactory, the donor is offered a target surgery date.  This date depends on the availability of resources and staff as well as your schedule and that of the recipient. 

 

Can the evaluation be done more quickly? 

 

Expedited workups for urgent living donation are only done in exceptional circumstances.  These are most often for an adult with acute liver failure or a child with rapidly deteriorating liver function where death is expected to occur within hours to days.

 

This event requires  a very careful assessment due to the pressure to donate.  Issues that will be considered at this time include these items.

 

• Expedited donor assessments are not the standard of care.
• Donor safety remains most important.  The transplant team will not reduce safety by taking short-cuts.
• Live donation for recipients with a poor prognosis will not be offered when it is believed that the probability of recipient survival is less than 50%. 

 

Surgical Risks and Complications

 

Liver donation has major risks no matter how carefully the donor surgery and work-up is done.  It is vital that people who are thinking about being donors have a good understanding of these risks.

 

• Liver donation is a complicated process.  Donors may die or have severe complications happen even when the very best care is given.

 

• The surgery is done through a large incision across the stomach that can cause mild, permanent weakness and numbness in that area.  There will be a scar.

 

• The remaining liver grows back to its original size in about 6 weeks.  It is expected that liver function will return to normal.  If it does not, this surgery could be fatal to the donor.

 

• The risk of death is estimated to 0.1 to 0.4 % with liver donation.

 

• Potential risks of this surgery include, but are not limited to, the list below.
  • Reaction to the anesthesia given during the surgery.
  • Stroke or heart attack.
  • Blood clots in the legs or lung.
  • Fluid around the lung or collapse of a lung (pneumothorax).
  • Fluid retention (edema).
  • Mild or severe infections.
  • Bleeding requiring blood transfusions.
  • Repeat operations.
  • Bile leakage or bile duct complications.
  • Injury to other organs such as the spleen, stomach, or intestine.
  • Injury to the remaining liver blood vessels or bile ducts resulting in liver failure and the chance of needing a liver transplant.
  • Depression.
  • Unsightly scar.
  • Pain in the incision that doesn’t go away.
  • Financial strain.
  • Problems getting insurance in the future.

 

The Donor Surgery

 

The target surgery date is always tentative and subject to change

 

• You may opt out of donation at any time.
• The liver transplant program may change the target date if the program believes that it is necessary to delay the transplant.

 

Preparing for Surgery

 

Before your surgery, you will come to UWHC transplant clinic for the pre-operative evaluation.  You will have an updated physical, blood tests and an anesthesia appointment.  You will be taught deep breathing and coughing exercises.  This helps prevent pneumonia.

 

You will receive a reminder in the mail about what time to come for this visit.

 

You will be admitted to the hospital the morning of the surgery.  If you need to travel by airplane to Wisconsin we ask that you complete your air travel at least 2 days before the surgery.  Sitting in an airplane for a prolonged time increases the risk of blood clots during and after the surgery.

 

The evening before surgery, your evening meal should be clear liquids only.  You will take a medicine to clean out your bowels.  Then, you will shower using a special soap.  You should not eat or drink anything after midnight.

 

 

The Day of Surgery

 

The day of your surgery you will be admitted to the hospital.  While in the First Day Surgery Center an intravenous catheter (IV) will be inserted into one of your veins.  Through the IV, placed in the arm or hand, you will be given fluids.

 

About an hour before surgery, you will get a shot.  This will relax you and dry the secretions in your lungs.  It will make your mouth feel dry, and you will become sleepy.  After the shot, we will ask you to stay in bed.

 

 

 

During surgery, a small rubber tube (Foley catheter) will be placed in your bladder.  This allows us to watch your urine output.  It remains in place until the day after surgery.

 

 

The surgery will last 6-8 hours.  An incision will be made across your upper abdomen.  The liver will be cut.  A portion of the liver will be prepared for transplant into the recipient. 

 

At the end of your operation, the incision will be closed and a temporary drain (plastic tube) may be placed to exit through the skin.  This will be removed in 3 – 5 days. 

 

It is possible, although very rare, that the surgeons may find reasons not proceed with the donor surgery and the incision is closed.

 

You will be in the recovery room for 1 – 2 hours before being taken to your room on the transplant unit.

 

What to expect while in the hospital

 

You can expect to be in the hospital for 5 – 7 days.

 

When you arrive in your room, you will still be quite sleepy.  You will still have the IV and Foley catheter in place.  Your nurse will take your blood pressure, pulse, and temperature, and measure your urine output often.

 

You will be asked to cough and deep breathe at least hourly while you are awake.  Anesthesia can increase your lung secretions.  These can stay in your lungs and may lead to pneumonia.  By deep breathing, air reaches the area where the secretions collect and coughing helps to bring them up.  A small plastic tool (incentive spirometer) will be used to help you take deep breaths.

 

Most often you will get up and walk about six hours after you return to your room.  Walking will help prevent many problems that can occur after surgery. These include pneumonia, blood clots and bowel problems.  You should walk at least every 1 – 2 hours during the first few weeks.

 

You may be given elastic socks (TED stockings) to help the blood flow to and from your legs to help prevent blood clots.

 

Your doctor will decide when you can resume eating.  Surgery and pain medicines can slow the wave-like action of your bowels for a short time.  As bowel activity and sounds return and you start to pass gas, you will be given liquids.  Slowly you will advance to eating regular food.  Walking as early as you are able will help your bowel function return to normal.

 

If drainage tubes were inserted during your surgery these are removed after the first few days.

 

You should look at your incisions daily.  Watch for signs of infection such as redness, swelling, or drainage.

 

Your doctor will order pain medicine for you.  Until you are able to drink, you will receive it through the IV.  The pain medicine should be taken to help decrease incision pain.  It will be easier to walk and take deep breaths if your pain is under control.  Once you are able to eat, you will take a pain pill.

 

Blood tests are done to check your liver function. 

 

You may develop mild jaundice after the donor surgery.  The jaundice most often improves without any treatment.  If it does not, you may require more tests. 

 

You are started on a blood thinner after surgery, which requires a daily shot for up to 2 weeks.

 

Donor Follow-up Care

 

After you leave the hospital

 

• You will come to the transplant clinic for a doctor’s visit in about 2-4 weeks.  At your clinic visit, you will have blood work done and will be seen by your transplant surgeon.  If you live far away, you will need to stay in Madison at least until this first visit.  Based on your recovery, you may be asked to stay longer.
• You will go home with pain pills to help control your pain.  Your doctors will advise you on over-the-counter pain pills that you can use as well.
• You will continue to need a blood thinner through a daily shot for two weeks. 
• You will come to our transplant clinic again at 4-6 months and one year and two years after donation.
• You should see your regular home doctor yearly.

 

You should plan on being off work for 8 to 16 weeks.

    

                                                 

 

• You will have activity restrictions such as not being able to drive or lift heavy objects for several weeks. 

 

• It may take 3 to 4 months before you are able to return to a normal routine and normal energy level.  It will be important to have a specific plan in place before the surgery of who will be able to help and support you during this time.

 

• It is common to have a “letdown” or mild depression while recovering.  This most often improves in a short time.  Transplant social workers are available to talk.  Please contact the transplant program for help.

 

Phone Numbers

 

Transplant office number           (608) 263-1384

Fax Number                             (608) 262-5624

Main Hospital number                1-800-323-8942.  

Ask for the transplant office telephone number listed above or the department you want to reach.

 

The Gift of Life

 

Donating part of your liver is not an easy choice.  It is not for everyone.  A person should consider the emotional, physical, and financial factors.  The choice to donate should be made free from any feelings of family pressure, responsibility, need for recognition, or financial gain.  Feeling anxious and afraid is very normal and common.  It is our hope that this handout helps put things into perspective for you.  Our entire staff is happy to answer any questions. 

 

Giving someone part of your liver can be very rewarding and satisfying.  Whatever you decide, make the choice that is right for you.

 

The information provided should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Any duplication or distribution of the information contained herein is strictly prohibited.

Last Updated: 09/10/2012

Copyright © 09/10/2012 University of Wisconsin Hospitals and Clinics Authority. All rights reserved. Produced by the Department of Nursing. HF#6839

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