Adult Liver Transplant

Adult Liver Transplant
A Guide for Patients
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This booklet provides general information about liver
transplant at the University of Minnesota Medical
Center. It explains what you can expect during
your transplant evaluation and your hospital stay. It
also describes your role in caring for yourself after
your transplant. Please ask the transplant team any
questions you may have at any time.
Recent statistics show that our results meet or
exceed expected standards. For current survival rates
and other statistics, you may visit one of the websites
below.
• The United Network of Organ Sharing: www.
unos.org
• One-year Survival Rates for Kidney, Pancreas and
Liver Transplant: www.srtr.org
• The Organ Procurement and Transplant Network:
https://optn.transplant.hrsa.gov/
• University of Minnesota educational videos:
www.mytransplantplace.com
• University of Minnesota Liver transplant website:
https://www.mhealth.org/care/treatments/livertransplant-adult
If you have questions about this information,
please ask your doctor at your next visit to the
Transplant Center.
Contents
Overview
Overview................................................................. 1
The liver is a very important organ in your body.
It performs three major tasks:
Your transplant evaluation.................................... 2
• It makes proteins from digested food. These
proteins help fight infections and stop bleeding.
After the evaluation............................................... 4
A note about insurance......................................... 5
• It helps the body rid itself of waste products.
It also helps to break down medicines and flush
them from the body.
Your donor.............................................................. 6
Waiting for your transplant.................................. 7
• It secretes bile, which helps the body absorb
fat. Fat is needed for energy and for absorbing
vitamins A, D, E and K.
Problems to watch for while you wait................. 9
Coming in for your transplant surgery.............10
The operation.......................................................11
When your liver doesn’t work well, a transplant may
be needed. The goals of liver transplant are to extend
your life and improve your quality of life.
Possible surgical complications..........................11
After your transplant...........................................12
Liver failure can be caused by a number of things,
including inherited diseases, infections and toxins
such as alcohol and some medicines. Some of these
diseases can come back in the new liver. Your
transplant doctors will tell you if you are at risk
for this.
Going home..........................................................13
Possible complications after transplant.............15
Keeping track of your vital signs and lab tests.16
We are here to help..............................................17
The best time to have your transplant is when your
health is stable but you are showing signs of liver
failure. Signs include:
Contacting UNOS................................................17
• Fluid retention (swelling or bloating)
• Feeling very tired
• Problems sleeping
• Confusion
• Unusual bleeding
• Yellow skin and eyes (jaundice)
If you vomit blood or pass blood in your stool
(bowel movements), this is a medical emergency.
Go to the nearest emergency room. Be sure to tell
your doctor afterward.
1
Your evaluation will consist of several doctor and
clinic visits. We urge your family or close friends to
come with you. You will receive a lot of information,
so please take notes and write down questions.
Your transplant evaluation
Your local doctor will let you know when it is time
to meet with a doctor from the transplant team. He
or she will ask you to call us to start the process.
If you do not want to start or continue your
evaluation, please let us know.
At that time, please do the following:
• Contact your health insurance provider to
ask about your coverage. Explain that you will
be having a liver transplant evaluation at the
University of Minnesota Medical Center. This
is also a good time to discuss post-transplant
costs for home care and medicines. (Your social
worker will talk to you about this during your
evaluation. A financial representative is available
to talk with you if you have questions about your
insurance coverage.)
Drug and alcohol evaluation
If you have a history of IV drug use or heavy
alcohol use, you will need to have a formal chemical
dependency evaluation. The transplant social worker
will explain how to arrange for this. You must follow
through with any recommendations from this
evaluation, including further treatment.
You must be sober for at least 6 months before
starting your transplant evaluation.
• Have your medical records sent to the transplant
office. Once we receive your records, we will
schedule your evaluation.
We may test you for drug use at any time. You
cannot receive a new liver until you have been
alcohol-free and drug-free for one year. You will
be asked to sign a contract to show that you agree
to this.
If you are very sick, you may have to stay in the
hospital during your evaluation.
The goal of your evaluation is to decide if liver
transplant is the best treatment for you. We will:
Doctor consultations
• Check for problems that might occur during or
after your transplant.
You will meet the transplant team doctors. Your
transplant coordinator may be with you during some
of these visits.
• Gather recent medical information for
the surgery.
• The transplant hepatologist (liver doctor) will
review your records. If the doctor thinks you
might need a transplant, you will see him or her
regularly. He or she will do an exam, then help
manage your disease.
• Review and adjust your diet and treatment so that
you will be in the best possible condition for a
transplant.
• The surgeon will explain the operation, possible
risks and donor options.
• Teach you more about liver transplant surgery,
after-care and what to expect while waiting for a
transplant.
You may need to see other doctors as well, including
a cardiologist (heart doctor), nephrologist (kidney
doctor), endocrinologist (hormone doctor),
neurologist (brain doctor) and psychiatrist. Feel free
to ask questions at any time.
• Allow you to meet the transplant team.
• Discuss your liver transplant options.
2
If you have bone disease, we may have you take
medicine to strengthen your bones before your
transplant. Please tell your transplant coordinator
if you’ve had this test in the past.
Blood tests
You will have many blood tests, including:
• Standard tests to measure liver function, protein
levels, electrolytes and clotting factors.
• If you have a liver tumor, we will need to do a
chest CT (computerized tomography scan) and a
bone scan to see if the tumor has spread.
• Blood type tests. (We will check your blood type
twice.)
• Other scans and tests as needed. These may
include an MRI (magnetic resonance imaging)
and a CT. If you need further tests, we will explain
them in detail.
• PSA test for men over 50 (to check for
prostate cancer).
• Pregnancy test for women of childbearing age.
• Tests for certain viruses such as hepatitis A,
hepatitis B, hepatitis C and HIV.
Digestive system check
All patient over age 50 need to have a colonoscopy,
if they have not had one in the past year or so. If you
have had one within the past five years, please have
the results sent to your transplant coordinator.
Nutrition check
You will meet with a dietitian. He or she may check
your height and weight, then review your blood
work to check your nutrient levels.
If you have vomited blood in the past, please let us
know. You will need to have regular endoscopies.
The dietitian may ask you to write down everything
you eat or drink for 3 days. He or she will use this
record to measure your routine calorie and protein
totals. You may also receive advice about your diet.
Please tell the dietitian if you would like to meet
with him or her again.
Heart studies
You will have an ECG (electrocardiogram).
If you are over age 40 or have a history of heart
problems, diabetes or high blood pressure, you will
need to have a dobutamine stress echo test. (We will
give you medicine to make your heart beat as if you
were exercising. We will then use ultrasound waves to
see how well your heart is working.)
Scans and X-rays
You may have:
• A chest X-ray.
If you have a history of heart problems or if your
tests are abnormal, you will be asked to meet with a
heart doctor (cardiologist).
• An ultrasound of your liver. This test uses sound
waves to show us the size, shape and position
of your liver. It can also show if there are any
unusual growths or masses. The radiologist (X-ray
doctor) will use the ultrasound to check the blood
flow to your liver.
Lung tests
If you smoke or have ever had lung problems, you
will need special breathing tests (called pulmonary
function tests). We require you to stop smoking.
• A bone density scan (DEXA scan). This will show
how strong your bones are. People with liver
disease sometimes have advanced bone disease.
3
Social Services consult
Liver cancer
You will meet with a social worker during your
evaluation. He or she can describe support services
and help with changes that you and your family may
need to make in the short-term.
During a medical exam we sometimes find a tumor
in the liver. This may be a type of liver cancer.
Some liver diseases increase the risk of liver cancer
(cirrhosis, viral hepatitis B and C, hemochromatosis).
Your social worker will also discuss financial concerns
and help you arrange a chemical dependency
evaluation, if needed. Anyone who has misused
alcohol or drugs will be asked to have this evaluation.
If you have many tumors or large tumors, you may
not be eligible for a transplant. In this case, your
doctors will discuss your options with you. You may
be asked to meet with a cancer doctor (oncologist).
Financial consult
After the evaluation
A financial case manager will discuss the costs
of both the transplant and the medicines needed
afterward. He or she will help you understand your
insurance—what it will cover and what it won’t.
At the end of your evaluation, the transplant team
will meet to discuss your results. They will discuss
any concerns they may have about your test results
and may suggest further testing.
Routine health care
If they decide that you are a good candidate for
transplant, we will send all of your information to
your insurance company to ask for approval.
All necessary dental work should be completed before
your transplant. You should see your dentist every
6 months while you are waiting for the transplant.
You may choose not to have the transplant. In this
case, you may continue your current treatment or
choose to end it. No matter what you decide to do, a
doctor will still provide your care.
Please see your family doctor for the following tests
and vaccines. Have your doctor send all test results
to your transplant coordinator.
Adult transplant waiting list
• Make sure that you are vaccinated for both
hepatitis A and B viruses. Being vaccinated
against hepatitis B will increase the number of
available donors you can accept.
Once your insurance has approved your transplant,
you will be placed on the transplant waiting list. You
will receive:
• You will need to have a pneumococcal vaccine
(shot to prevent pneumonia), if you have not had
one in the past 5 years. Please keep a record of
all shots.
• A letter stating that your name has been added to
the list.
• A doctor’s order showing what lab tests you will
need at your local clinic. Bring this to the clinic.
The order will state how often you need lab tests
and where the clinic should send your results.
• We suggest yearly flu shots.
• Women should see their family doctor for a
yearly Pap test and, if they are over age 40,
a mammogram. If you have had an abnormal test,
tell your coordinator.
4
Your MELD score
MELD stands for Model for End-Stage Liver
Disease. The MELD score uses a complex
formula that includes specific blood values for
total bilirubin, INR, sodium and creatinine.
Your MELD score is based on your lab results. Adult
scores range from 6 to 40. The patient with the
highest score receives the next liver available for his
or her blood type.
Research studies
The higher your score, the more often you will need
lab tests. Your doctor or transplant coordinator will
tell you what your MELD score is at each clinic visit.
We may invite you to take part in liver transplant
studies before and after your transplant. Doctors will
discuss this with you at your clinic visits.
Your lab results must be sent to the transplant
office on time. (See below.) Make sure your clinic
sends the results on time, or call your transplant
coordinator after each lab test. If you do not, you
may fall to a very low MELD score. This means your
transplant could be delayed. If you have questions,
please talk to your coordinator.
A note about insurance
Every health plan is different. Some plans will pay
100% of your costs. Others will pay 80% or less. Call
your insurance company or read your policy. Find
out what your plan will pay for and what it won’t. If
you have questions or concerns, please speak to a
financial case manager at the Transplant Center.
Your MELD score will change over time. A member
of your transplant team will tell you how often you
need lab tests.
Some health plans will only pay for transplants done
in certain medical centers. If your plan does not
approve a transplant at our hospital—or if it limits
the services it will pay for—you may need to pay
part or all of the cost. In this case, your financial case
manager will help you explore other resources for
payment.
• If your MELD score is 25 or greater: You will
need new lab tests every week. Fax your results
within 48 hours. If we receive tests that are more
than 7 days old, you must repeat the tests.
• If your MELD score is 19 to 24: You will need
new lab tests every month. Fax your results
within 7 days. If we receive tests that are more
than a month old, you must repeat the tests.
After a liver transplant, the cost of your health
and life insurance may increase. Future insurance
companies may refuse to insure you. Your current
plan may refuse payment for your medical care
because you have a pre-existing condition.
• If your MELD score is 11 to 18: You will need
new lab tests every 3 months. Fax your results
within 14 days. If we receive tests that are more
than 3 months old, you must repeat the tests.
• If your MELD score is 10 or less: You will need
new lab tests every year. Fax your results within
30 days. If we receive tests that are more than 12
months old, you must repeat the tests.
5
The donor’s health history may affect the success of
your transplant. If the organ is damaged before we
receive it, this may affect your outcome as well.
Your donor
Your new liver will be “matched” according to size
and blood type. Usually, a liver is chosen from a
donor who has the same blood type as the recipient.
There is a small risk of getting a disease from a
deceased donor (such as HIV or hepatitis). All
donors are tested for disease, but some diseases may
not show up at the time of testing.
The new liver must fit into the body in about the
same position as the original liver: the upper side of
the abdomen, under the ribs.
Expanded criteria donors
The blood vessels leading to and from the liver can
be more easily connected if they are about the same
size as those of the old liver.
These are deceased donors who may be older
than standard donors or have had certain health
problems. They are not perfect donors for everyone,
but they may be a good fit for some people. Please
tell your surgeon if you would like to learn more
about this option.
Living donors
The wait time for a deceased donor liver can be
very long. At the University of Minnesota Medical
Center, it is possible to use a live donor.
A living donor transplant involves taking part of the
liver from a family member or friend and using it for
transplant. We can do this because the liver is one of
the few organs that can regenerate (grow back).
A living donor may help you avoid a long wait for
your new liver. The donor must undergo a major
surgery that involves some risk. The donor must be
in good health to qualify.
There are three types of donors: deceased donors,
expanded criteria donors and living donors.
A living donor is often a friend or family member.
If someone you know is interested in being a living
donor, he or she can contact the transplant office
after your evaluation is completed. A donor needs to
have a medical and psychological evaluation. Please
refer to the booklet Living Donor Liver Transplants.
Deceased donors
A deceased donor is someone whose tissues or
organs are donated soon after he or she dies. Some
of these donors have livers that are large enough to
split between two people. Split livers are used only
in smaller recipients. If this is an option for you, the
surgeon will tell you during your evaluation.
If you are very ill, a living donor may not be an
option for you.
6
• Make sure to eat enough protein. Eat both animal
and plant sources. Animal sources include meat,
fish, chicken, eggs and dairy products (such as
milk, cheese, and yogurt). Get plant protein from
nuts and seeds, soy products, beans and legumes.
Your dietitian can tell you more about how to get
enough protein.
Waiting for your transplant
It may be some time before you have your transplant
surgery. While you wait, it is important to follow the
steps listed below.
See your doctor regularly
It is your job to schedule all doctor visits.
• Your dietitian can help you build a healthy meal
plan. The goal is to get enough calories and
protein without putting stress on the liver.
You will need to see a liver doctor (hepatologist)
from The Transplant Center at least every 3 months.
He or she will assess your condition, order lab tests,
adjust your medicines and tell you how often you will
need to have check-ups. Some of these check-ups
may be done with your family doctor.
Quit smoking
If you smoke, you need to stop. Smoking increases
the risk of heart and lung problems (such as
pneumonia) after surgery. Smoking after transplant
also increases your risk of cancers of the mouth,
throat and lungs.
You will need to see your family doctor for general
health care. Your doctors will write to each other to
share the results of your exams and note any changes
in your health.
Be sure we know how to contact you
To stay active on the transplant waiting list, you will
also need to have regular lab tests at your local clinic.
(See “Your MELD score” on page 4.)
If your liver will come from a deceased donor, we
will call you when a liver is available. If we can’t find
you, you may lose the chance for this liver. We will
not leave a message on your answering machine or
voice mail.
Eat the right foods
Your liver disease may change the way that your
body stores nutrients. For this reason:
We must have current phone numbers where you
can be reached 24 hours a day. This may include
numbers for close friends, family and work. Please
call us right away if a phone number changes. You
will also need to contact the transplant office any
time you are in the hospital.
• Your doctor may suggest special vitamin and
minerals supplements. Do not take any other
vitamin, minerals or herbal products without first
discussing them with your doctor. Some of these
products may cause liver problems. Please tell
your transplant coordinator if you start any new
medicines, vitamins or herbal products.
It is helpful if one family member always knows
where to reach you.
Plan your transportation
• If you have fluid retention (bloating or swelling),
you may need to restrict your sodium (salt) intake.
Read nutrition labels on all packages and try to
stay below 2000 mg of sodium per day. Foods in
cans, boxes or jars tend to have the most sodium.
Whole foods such as fruits, vegetables, fresh meat
and whole grains (rice, noodles) are best.
If your liver will come from a deceased donor,
arrange your ride to the hospital in advance.
Plan more than one route in case of rush hour or
bad weather.
7
You may need to arrange air travel if you live more
than six hours from the hospital. It might be a good
idea to call your local airlines to get their schedules.
• A list of your current medicines (bring this to
every clinic or hospital visit)
• A favorite pillow or blanket.
Some families arrange for a company plane. Check
with corporations in your area—they may be willing
to make a plane or pilot available. This is good public
relations, which is why many are able to help.
If your liver will come from a deceased donor, be
sure your packing list is ready when the doctor calls.
Prepare your family and friends
Plan for your children and pets
Please tell visitors that plants and flowers (cut or
dried) are not allowed in your room. Your medicines
will lower your immune system, and plants and
flowers may increase your risk for fungal infection.
When you return home, this will not be a problem.
You will be in the hospital for at least 2 weeks. Some
people stay as long as 2 months.
If you have children, now is the time to plan for their
care while you are in the hospital. Get them used to
another home if they will be staying there.
Your children may visit you in the hospital, but
they must be carefully supervised and have no
contagious diseases.
Remind your family and friends that they need
to take care of themselves in order to be the best
possible support for you. This includes getting plenty
of sleep, eating regular meals and limiting caffeine
and tobacco.
If you have pets, you will need to arrange for their
care as well.
You might also warn them that you will tire easily for
the first three to six months after your transplant.
Plan where your family can stay
Prepare yourself emotionally
If family and friends will stay in the Twin Cities while
you are in the hospital, start looking for hotels. You
may ask your social worker for options. Or call our
Accommodations Office at 612-273-3695 or 1-800328-5576.
Waiting for your transplant is stressful. Patients have
told us that being in the hospital after the transplant
is also difficult.
Please think about how you and your family have
dealt with great stress in the past. Think about what
helped you through these periods as well as what
you would like to do differently this time.
Family members may not stay overnight in the
hospital if you have a semi-private room.
If you are having a hard time, please ask for help.
Social workers, transplant coordinators, clergy and
other support staff are here for you. You may want
to ask your social worker about our weekly support
groups. Family and friends are invited to attend.
Plan what to bring to the hospital
Make a list of items to bring with you to the hospital.
Be sure to include:
• Comfortable clothes (jogging suits, sleepwear)
that have soft, elastic waistbands or no waistbands
Finally, try to take a tour of the University of
Minnesota Medical Center. This may be very helpful
for you and your family. Your social worker can
arrange the tour.
8
Problems to watch for while you wait
Fever
Be on the alert for any of the following symptoms.
These may be signs that your liver disease is getting
worse. If you notice a change, call your family doctor
and your transplant coordinator.
Call your family doctor if you have a fever over
101°F (38.3°C) taken under the tongue.
If your liver is failing, you cannot fight germs as
well and may get sick more often. An illness can be
much more severe for you than for other members
of your family.
Feeling sleepy or mentally cloudy
People with liver disease often have low energy and
trouble sleeping. It is common to want to sleep all
day and stay up all night. If these are problems for
you, be sure to tell your doctor. Take a short nap in
the afternoon if you need to.
Fluid retention
When the liver is not working well, fluid may leak
out of your blood vessels and build up in your
abdomen (belly). This fluid is called ascites (uh-SYteez). If your belly gets large and you have trouble
breathing, call your transplant coordinator or go to
the emergency room. You may need to have fluid
removed from your belly.
As your liver disease gets worse, your ammonia levels
may rise. (Ammonia is a waste product of the body.)
This can cause your thought process to slow or you
may feel confused. Your family may be the first to
notice this. You might need medicine to help you
think more clearly. If you feel this way, do not drive.
Swelling or fluid build-up may also occur in other
parts of the body, such as in your legs or ankles. This
is called edema (uh-DEE-muh).
Signs of bleeding
It is important to watch for any signs of blood in
your vomit or stool (bowel movements). This can be
life threatening. Call your family doctor or go to the
emergency room if:
If you notice swelling, it may help to limit your
salt intake.
• Your vomit is bright red or dark brown (like
coffee grounds).
When your liver isn’t working well, you may notice
that your skin or the white parts of your eyes turn
yellow. This is called jaundice (JAWN-dis). You
may also notice darker urine or itching skin. This is
not unusual.
Jaundice
• Your stool is black.
You may also notice that you bruise more easily and
that bleeding from cuts may be harder to stop. You
may have nosebleeds. If using pressure will not stop
the bleeding, call your family doctor or go to the
emergency room.
Be sure to take good care of your skin and use lots of
lotion. You may also ask your doctor for medicines
to help with the itching.
9
Your family can stay with you until it is time to go to
the operating room. We will then direct them to the
waiting area on the third floor. After your surgery,
the doctors will meet them there.
Coming in for your transplant surgery
If you need to contact the transplant unit before you
arrive (night or day), call 612-273-3000. Ask for the
Solid Organ Transplant Unit.
Living donor transplants
Deceased donor transplants
If you will receive a liver from a living donor, we will
give you a date for your surgery.
If you will receive a liver from a deceased donor,
you will get a call from a doctor at the University of
Minnesota Medical Center. Calls like this often come
at night, so be sure to answer your phone.
The day before surgery: You will come to the
Transplant Center for a physical exam. This will
include blood tests, chest X-rays and an ECG. We
will also teach you how to get ready for the surgery.
The doctor will ask you to come to the hospital as
quickly (and safely) as possible. Please be sure to:
The day of surgery: Please arrive at 5:30 a.m. Go to
the Same Day Admission Unit (3C) at the University
of Minnesota Medical Center.
• Get the doctor’s name and phone number.
• Ask the doctor if you should stop any of your
medicines. If you take insulin for diabetes, ask
what to do about your insulin.
We will give you elastic stockings (to prevent blood
clots in your legs) and a hospital gown. Please remove
dentures, glasses, nail polish, lipstick, makeup,
jewelry and hairpins. Leave your valuables at home,
with Security or with your family for safekeeping.
• Stop all foods and liquids. If you have taken
insulin, you may eat hard candy or drink glucose
fluids (juice, regular soda pop) to prevent low
blood sugar.
We will insert an IV (intravenous) line. This allows
us to give you fluids and medicines during the
surgery. The doctor in charge of your anesthesia
medicine (the anesthesiologist) will also come to
see you.
Once your arrive at the hospital, please stop at
the Admissions Department. They will know you
are coming and will direct you to the Transplant
Unit. Once you are admitted, we will prepare you
for surgery.
Your family can stay with you until it is time to go to
the operating room. We will then direct them to the
waiting area on the third floor. After your surgery,
the doctors will meet them there.
• You will have a chest X-ray, ECG, blood tests and
urine tests.
• You may need enemas to clean out your
intestines.
• You will be told how to take a shower using
special soap.
• The doctor in charge of your anesthesia
(anesthesiologist) will do a brief exam.
• We may insert an IV (intravenous) line to give
you fluids and medicines.
10
The operation
Possible surgical complications
• Bleeding: Bleeding is a major concern during
and right after surgery. A blood transfusion will
be given if needed. You may need to go back to
surgery to correct further bleeding.
A liver transplant is very complex. The average
surgery takes 6 to 10 hours to complete. The
surgeons must isolate the major blood vessels and
bile duct of your liver and attach the “new” liver to
the same vessels. They will remove the old liver and
gallbladder.
• Breathing problems: The liver, lungs and
diaphragm are located close to each other. For
this reason, fluid build-up as well as short-term
swelling in the new liver can make it hard to
breathe deeply. You will receive medicine to help
prevent pain and to keep you relaxed. You will
need the help of a breathing machine (respirator)
until you can breathe on your own.
The surgery is long because removing the diseased
liver can be difficult. If you have had other surgeries,
you may have scar tissue that causes tissues to stick
together. Also, poor clotting can cause bleeding. You
may receive blood products (a blood transfusion) to
make up for this loss.
• Infection: The drugs used to prevent rejection
may limit the body’s ability to fight infection. We
will give you antibiotic (germ-fighting) medicine
before and after surgery. (Most people take this
for the rest of their lives.) We will test you often
for early signs of infection.
Your incision will be in the upper abdomen, just
under the rib cage.
• Obstruction (blocked vessels): Your blood
vessels or bile ducts may become blocked right
after surgery. This may slow the flow of blood or
bile to and from your new liver. We will do an
ultrasound after surgery to check the blood flow.
Liver
Bottom
of rib cage
While most patients come in with a swollen spleen,
this is rarely removed during the surgery. The spleen
may get smaller in the weeks after the transplant.
Your spleen helps to maintain a good blood flow
through your new liver. It is only removed when
it causes problems or when your liver donor has a
different blood type.
• Kidney damage: You may have kidney problems
after your surgery. These may be short-term or
lifelong and have a number of possible causes.
Sometimes liver disease can affect the kidneys.
At other times, anti-rejection drugs may affect
kidney function. For some people, the blood flow
from the kidneys is disrupted during surgery,
causing the kidneys to function poorly for several
days. (In this case, kidney function will often
improve over time.) Some people need dialysis for
a time after surgery.
After your new liver is in place, your surgeons will
watch for signs that it is healthy and has a good
blood supply. One of the surgeons may update your
family at this time.
We will watch your urine output and do blood
tests to check your kidneys. You may have a tube
in your bladder (a urinary catheter) for several
days until your fluids and kidneys are stable.
Incision
11
• Chest tube: In rare cases, a tube may be placed in
your lungs to help drain fluid. This is temporary.
After your transplant
The Intensive Care Unit
• Foley catheter (urinary tube): This tube will be
in your bladder for a number of days until your
fluids and kidneys are stable. It allows the nurses
to check your urine output.
After you leave the operating room, you will be
taken to the adult Intensive Care Unit on 4D. You
will stay there until you are stable and able to breathe
on your own. Visiting hours are limited. Please ask
your nurse for more information.
• Intravenous (IV) lines: You will have many IV
lines, including a “central line.” This tube is placed
in a large vein near the heart. We use it to give
medicines, fluids and blood transfusions. It is
also used to take blood samples and check fluid
pressures in the body. You may have this until the
day you leave the hospital.
You may be slow to wake up after surgery. We may
give you medicine to control pain and help you
relax. You will find that many tubes were placed in
your body during surgery.
• Endotrachial (breathing) tube: You will have a
tube in your throat to help you breathe. It may be
uncomfortable, but we will give you medicine to
help you relax. You cannot talk while the tube is
in your mouth. The doctors will remove the tube
as soon as you can breathe on your own.
• Nasogastric (NG) tube: This helps keep your
stomach empty so you don’t get nauseated (feel
sick to your stomach). During surgery, the tube
is placed in the nose and goes down into your
stomach. It will stay in place until you can pass
gas and have bowel movements. You cannot eat
when you have an NG tube.
• Biliary stent (tube): This tube is placed in your
bile duct at the time of surgery. It allows bile to
flow freely while the stitches in your bile duct
heal. Your surgeon will decide when to remove
the stent. There are two kinds of biliary stents:
• Compression sleeves: These sleeves surround
your lower legs. They will inflate and deflate every
so often. This helps blood flow and prevents blood
clots. Once you can get up and walk, you will not
need them.
ȤȤ An external stent comes out the front of the
abdomen. It drains bile into a small plastic bag.
The bile often looks golden or dark green.
The Transplant Unit
ȤȤ An internal stent is placed inside your body
at the site where your new bile duct connects
with your old one. It allows the tissue to heal
without scarring and blocking bile flow.
Once you are stable and your breathing tube has
been removed, we will move you to the Transplant
Unit. You may be in a single or double room.
We will draw blood tests daily, usually through your
central line. You may also have X-rays and a liver
biopsy to make sure your liver is working well.
• Jackson-Pratt (JP) tubes: These help drain the
extra fluid and blood from the surgical area in
your abdomen. They are attached to soft plastic
bulbs that provide gentle suction. You may be
sent home with one of these drainage tubes. We
will tell you how to care for it. We will remove the
tube during one of your follow-up visits.
While you are on the Transplant Unit, you will
learn about your medicines and how to take care of
yourself at home. You will need to go to two different
classes. Your nurse will schedule these for you.
You will also receive a handbook for patients. This
12
You will need to write your lab results in your
log book and call them in to the transplant office.
The transplant coordinator will call you if there are
changes or concerns. If you do not give us your lab
results, we will not know if your liver is working well.
provides general information and a place to write
your lab results.
Your nurse will work closely with you as you learn.
By the time you go home you will know how to take
your medicines, record your lab values, check your
blood pressure and more. Once you go home, you
will need to keep track of your lab values and report
them to the transplant office for the rest of your life.
Follow-up visits
Your nurse will arrange for you to see a doctor at
the Transplant Center one week after you go home.
At that time, the surgeon will check your incision,
drains, medicines and pain control. You will also
meet with your transplant coordinator. You must
bring your medicine card and patient handbook to
this appointment.
Going home
Expect to be in the hospital for at least 2 weeks.
Some people stay as long as 2 months.
Once you have attended the self-care classes and
know how to care for yourself, you will leave the
hospital. If you were very sick before your transplant,
you may move to a short-term care facility or rehab
(rehabilitation) unit until you are strong enough to
go home. You may still have a JP tube or stent. You
may still have staples in your incision.
You will return to the clinic again in a couple of
weeks. After that you must return 3, 6, 9 and 12
months from the date of your transplant, and then
once a year for the rest of your life. You will be seen
more often if you have any special problems.
Please remember to schedule your yearly visits.
You will not be reminded. If you live far from
The Transplant Center, you may have some of
this follow-up with your family doctor. However,
you must always stay in close contact with your
transplant team.
If you did not attend classes before leaving the
hospital, please call the Patient Learning Center at
612-273-4894 to schedule them. It is helpful to bring
someone with you to class.
After you go home, a home health nurse may come
to visit for the first couple of weeks. He or she will
help with routine blood tests, check your incision for
infection, change bandages, review your medicines
and provide other care. If have any questions, please
call your transplant coordinator.
Please remember to see your family doctor every year.
Your doctor will check your heart, blood pressure,
cholesterol and general health. The Transplant Center
will provide care for your new liver.
Biliary stents
Blood test results
When you first go home, you will need to have your
blood checked 2 or 3 times a week. This will decrease
over time to blood tests every other month.
You will need blood tests for the rest of your life.
This will tell us how well your liver is working. Just
because you feel well does not mean that your liver
is healthy.
13
If you have a biliary stent, you will likely have it for 6
weeks to 3 months. Your surgeon will tell you when
the stent should come out.
If you have an internal stent, it may pass out of your
system in your stool without you even knowing it.
You will have an X-ray about 6 weeks after surgery
to see if this has occurred. If the stent is still in place,
you will have an endoscopy to remove it.
consider your new liver to be foreign as well. These
cells can attack the liver. If not controlled, they could
cause the body to reject the new liver.
Healing after surgery
Your energy level will be low when you first return
home. Keep in mind that you just went through
a major surgery and will need time to recover. It
may take 3 to 6 months before you start to feel
normal again.
To prevent or control rejection, you must take antirejection drugs (immunosuppressive medicines) for
the rest of your life.
These medicines may reduce your body’s ability
to fight infections. To prevent some of the most
common serious infections, you will also need
to take:
Please remember:
• You should not lift anything heavier that 10
pounds for at least 6 weeks after you return home.
• You may not feel like eating much. Do your best
to eat small meals and snacks throughout the day
to maintain your weight.
• an anti-fungal medicine for a short time (nystatin,
Mycelex)
• an anti-viral medicine for three to six months
(acyclovir, ganciclovir)
• Some people have problems sleeping. If you need
to take a nap in the afternoon, do so. Your energy
will improve with time.
• an antibiotic for the rest of your life
(Bactrim, Septra)
• When you’re feeling better, you may notice the
texture and color of your skin improve. The
jaundice begins to clear and is usually gone in 3 to
4 months.
Other possible side effects are listed with the drugs
that follow. You may have more side effects right
after the transplant, but these will often go away over
time. Regular check-ups may prevent side effects or
catch them early so they can be managed.
The first year may be difficult. You will have many
doctor visits and lab tests. Taking your medicines,
having monthly blood tests and watching for
problems will soon become your lifelong routine.
You will take up to 3 anti-rejection drugs by mouth
every day. Your transplant doctors will tell you
which drugs are best for you. They will explain the
side effects and tell you how to manage them.
It is very important for you to take part in your
post-transplant care. Please stay in contact with your
transplant coordinator. This will likely improve your
long-term outcome.
Your anti-rejection drugs may include:
Transplant medicines
• Cyclosporine A (CSA; Neoral, Gengraf) or
tacrolimus (FK506; Prograf): You will need
regular blood tests to check the level of medicine
in your blood. Blood levels that are too high can
cause side effects such as hand tremors, tingling
or headache. Long-term use of this medicine can
cause kidney problems. Your doctor will watch
for this.
After your transplant, the cells in your body that
fight infection and attack foreign matter will
• Azathioprine (AZA; Imuran): At first, AZA may
cause your hair to thin. It can also decrease your
Future dental work
After your transplant, you will need to take
antibiotic (germ-fighting) medicine before every
dental visit.
14
white blood cell count. We may need to adjust
your dose to maintain the right white blood
cell count.
Obstruction (blocked blood vessel
or bile duct)
This may occur right after transplant or many
months later. It may or may not be very serious.
• Mycophenolate mofetil (MMF; CellCept):
MMF may cause diarrhea (loose, watery stools),
nausea (upset stomach) and vomiting (throwing
up). It may also decrease your white blood cell
count.
Your transplant coordinator will watch your lab
results carefully. If there is a change in your results,
he or she will tell you if blockage is a concern.
• Sirolimus (Rapamune, rapamycin): This may
raise your cholesterol and triglycerides (blood
fats). It may also decrease your white blood cell or
platelet counts.
Rejection
• Prednisone: In high doses, prednisone can cause
slow healing. It can also cause increased appetite,
weight gain, stomach irritation or ulcers, bloating,
high blood sugar, bone and joint problems,
sleeping problems, mood swings and depression.
Most people do not take prednisone after leaving
the hospital.
If you are having a rejection, it is vital to catch it
early. This improves the chances that the problem
can be treated. You must send us your lab results
regularly. If you do not, we will not know that you
are having a rejection.
A rejection may occur at any time. It is more likely to
occur if you don’t take your medicines as directed.
You may feel fine, but blood tests may show higher
than normal liver function tests. Some people will
have a low-grade fever. But only a liver biopsy will
tell us for sure if you are having rejection. A liver
biopsy is a simple test that can be done in the clinic.
The transplant team often gets the results back on
the same day.
If you are thinking about having a baby, please talk
to your doctor about your medicines.
Possible complications after transplant
While some problems might appear right after
surgery, others may show up weeks, months and
even years later.
If you have a rejection, your medicines will be
changed. If the rejection is severe, you may need IV
medicine in the clinic.
Infection
The risk of rejection lessens with time, but it never
totally goes away. As this risk decreases, so will your
doses of anti-rejection medicines. Some medicines
may be stopped entirely. You will notice that as your
medicines decrease, most of the side effects will get
better as well.
Signs of infection include:
• Fever over 101°F (38.3°C) under the tongue.
• High white blood cell count.
• Pain or redness at the incision or drain site.
If you ever stop taking your medicines, your
body will reject your new liver. This could be life
threatening.
Most infections can be treated with medicine from
your doctor. If you get an infection, it may slow
your healing process. Please call your transplant
coordinator if you have symptoms of infection.
15
Organ failure
Keeping track of your vital signs and lab tests
Vital signs
There is always a chance that your new liver will not
work. Also, if a disease caused your own liver to fail,
it may come back and damage your new liver. We
will watch closely for this.
You will need to check your vital signs regularly,
both before and after your transplant. You should
have the following items at home:
Cancer
• A thermometer to check your temperature.
A high temperature or a fever is often a sign
of infection. After your liver transplant, it may
also signal rejection. Report any fever over than
101°F (38°C) (taken under the tongue) to your
transplant coordinator right away.
Taken over many years, your anti-rejection drugs
may increase your risk of cancer, especially skin
cancer. For this reason, you should cover up before
going out in the sun or use a sun block (at least SPF
15). Do not use tanning beds.
• A scale to check your weight. Your weight may
go up or down a little each day based on fluid
changes in the body.
Your anti-rejection medicines may also increase
your risk of lymphoma, a more serious form of
cancer. You are at an even higher risk of you were
exposed to the Epstein-Barr virus before transplant
and become ill with it after. We will test your blood
before your transplant to see if you are at a high risk.
Those who keep smoking after transplant have
a higher risk of lung, mouth, tongue and throat
cancers. Again, if you are a smoker, stop. Talk to
your family doctor if you need help with this.
Many patients have a poor appetite right after
surgery. Eating small meals often will help you get
the calories you need to heal.
Months or year later, you may find that you have
a better than average appetite. It is important to
avoid gaining too much weight.
Some anti-rejection drugs can be hard on the
kidneys. It is important to send us your lab results so
that we can watch for changes. If your lab tests show
kidney problems, we will change your medicines.
• A blood pressure cuff. Many things affect blood
pressure, including hormones, medicines, fluid in
the body and how well your kidneys are working.
Your family doctor will help you manage your
blood pressure after your transplant. Please
see your family doctor soon after you leave the
hospital. Return once a year for a check-up.
Psycho-social problems
Lab tests
Liver transplant is stressful for both you and
your family. It may lead to depression, body
image problems, money problems and troubled
relationships. Your transplant care team and family
doctor can help you deal with these concerns.
For most blood tests, “normal values” vary from
one lab to another due to different testing methods.
The values listed here are current at the University of
Minnesota Medical Center since 2001.
Kidney problems
Some values are “off ” or abnormal for persons with
liver disease. You will get to know your own normal
values, close to these ranges, after the transplant. For
a few tests, normal values have not been established.
16
Hematology blood tests
INR..............................................0.89 to 1.09
Hgb (hemoglobin).....................11.5 to 15.7 g/dl
Factor V......................................70 to 130%
Hct (hematocrit)........................35% to 45%
Fibrinogen..................................170 to 370 mg/dl
WBC (white blood count)..........4 to 11 x 103/mm3
Blood gases
Platelets.......................................150 to 450 x 103/mm3
pH................................................7.35 to 7.45
Liver function tests
p02...............................................85 to 105 mmHg
PC02............................................26 to 40 mmHg
AST..............................................0 to 45 u/1
HC03...........................................18 to 29 mmol/L
ALT..............................................0 to 45 u/l
Other tests
Alk p’tase
Albumin......................................3.3 to 4.6 gm/dl
(alkaline phosphatase)...........40 to 150 u/1
Total protein...............................6.0 to 8.2 gm/dl
Bilirubin direct (conjugated).....0.0 to 0.4 mg/dl
Bilirubin total.............................0.0 to 1.3 mg/dl
We are here to help
5’ Nuc..........................................0 to 12.0 u/l
After reading this booklet, you may feel overwhelmed
with new information. Try to remember that you will
have more time to learn during the wait for your new
liver. We will help you as much as we can.
Electrolytes and blood chemistries
Na (sodium)...............................133 to 143 mmol/1
K (potassium).............................3.4 to 5.5 mmol/1
You can reach your transplant coordinator by phone
Monday through Friday, from 8:00 a.m. to 4:00 p.m.
Also use your clinic visits to ask any questions you
might have.
C1 (chloride)..............................96 to 110 mmol/1
HC03 (bicarbonate)..................20 to 32 mEq/1
BS (glucose)................................60 to 115 mg/l00m1
Remember that you are a very important member of
our transplant team. We expect to work closely with
you to assure the best possible outcome for your
liver transplant.
BUN (blood urea nitrogen)......5 to 24 mg/dl
Cr (creatinine)...........................0.4 to 1.0 mg/dl
Ca (calcium)...............................8.7 to 10.8 mg/dl
Contacting UNOS
Phos (phosphorus)....................2.9 to 5.4 mg/dl
UNOS (the United Network for Organ Sharing)
directs who can receive deceased (non-living) donor
organs throughout the United States. UNOS offers
a patient service line to help you and your family
understand transplant data and organ allocation.
You may also call to discuss problems you may be
having with your transplant center. Dial toll-free
1-888-894-6361.
Mg (magnesium).......................1.6 to 2.3 mg/dl
Coagulation tests
PT................................................11.0 to 13.5 sec
PTT..............................................23.0 to 34.0 sec
TT................................................13.0 to 18.0 sec
17
The Transplant Center
Phillips-Wangensteen Building
MMC 482, Room 2-200
420 Delaware Street SE
Minneapolis, MN 55455
612-625-5115 (transplant office)
www.fairviewtransplant.org
For informational purposes only. Not to replace the advice of your health care provider.
Copyright © 1989, 2007 Fairview Health Services. All rights reserved. SMARTworks 520229 – REV 09/16.