INTRODUCTION
This booklet has been prepared so that you may become acquainted with the
information you need to know after your liver transplant. While we suggest that
you read all the sections of the book that could apply to you, it is most important
for you to learn your medications and know how to take them before you leave the
hospital.
Your nurse on the transplant unit will fill out your medication schedule. It is
important for you to review and record your medications as soon as possible, so
that you are familiar with them when you are discharged from the hospital.
Always keep a list of your medications in your wallet.
Your transplant coordinator will meet with you to review all aspects of care before
you are discharged home. It is our hope to provide as much information as
possible to answer your questions and concerns, however this in no way attempts
to replace the ongoing relationship you have with your transplant team and primary
physician. As always, you should seek medical advice for any new symptoms,
changes in condition or concerns.
Please refer to the following page for instructions on your first follow up visit at
the Liver Center.
Liver Transplant Center Follow Up
Generally you will need to be seen in the Liver Transplant Office twice weekly for
the first three weeks after your transplant, then weekly for several weeks, and then
every two weeks. Clinic days are Monday and Thursday. You will need to have
your blood drawn at the Transplant Phlebotomy Office first in the University
hospital before you take your morning dose of PROGRAF/ NEORAL/
GENGRAF. You should then come over to the Liver Transplant Office and signin to be seen by your transplant coordinator. Expect to be in the office for about
four hours the first time you come in. As time goes on, the wait will be less and
you will be able to have labwork done closer to home in the future.
After Your Liver Transplant
1
TABLE OF CONTENTS
1. Early Post-Op Period.................................................................................. 5
After The Transplant............................................................................... 5
Incisions & Wounds ............................................................................... 6
Showering & Bathing ............................................................................. 6
Vital Signs .............................................................................................. 6
Record of Vital Signs ............................................................................. 6
Daily Patient Record............................................................................... 6a
Before Leaving the Hospital................................................................... 7
Transplant Clinic .................................................................................... 7
Contacting Your Donor Family.............................................................. 8
Tips to Prolong Survival After Transplant ............................................. 8
2. Medications.................................................................................................. 9
Prescriptions ........................................................................................... 10
Brand Name and Generic Cross Reference ............................................ 11
Wallet Medication Cards ........................................................................ 11a
3. Immunosuppressant Medications ............................................................. 13
Prednisone............................................................................................... 13
Neoral® (Cyclosporine/Sandimmune®) ............................................... 15
Prograf® (Tacrolimus/FK-506)............................................................. 18
Cellcept® ................................................................................................ 21
Imuran® (Azathioprine) ......................................................................... 22
4. Other Medications ...................................................................................... 23
Prophylactic Medications ....................................................................... 23
Bactrim.................................................................................................... 24
Mepron.................................................................................................... 25
Valcyte .................................................................................................... 26
Dapsone .................................................................................................. 27
Mycostatin .............................................................................................. 28
Anti-Ulcer Medications .......................................................................... 29
Prilosec.................................................................................................... 30
Other Medications .................................................................................. 31
Over-the-Counter Medication Recommendations.................................. 33
Over-the-Counter Medications to Avoid................................................ 34
5. Medication Schedule ................................................................................... 34a
6. Rejection ...................................................................................................... 35
After Your Liver Transplant
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7. Lab Work..................................................................................................... 37
8. Infection ....................................................................................................... 39
Signs & Symptoms of Infection ............................................................. 40
Preventing Infection................................................................................ 41
Colds ....................................................................................................... 42
CMV (Cytomegalovirus)........................................................................ 42
Injections/vaccinations ........................................................................... 43
Chicken Pox............................................................................................ 44
Pets.......................................................................................................... 45
Food Safety ............................................................................................. 45
9. Who to Call .................................................................................................. 50
Calling With Problems ........................................................................... 50
Social Work Services.............................................................................. 51
Billing Problems ..................................................................................... 51
10. Psychological Changes.............................................................................. 52
11. Mechanical Problems................................................................................ 54
12. PTLD: Post Transplant Lymphoproliferative Disorder ....................... 55
13. Disease Recurrence ................................................................................... 56
14. Follow-up Care.......................................................................................... 57
Your Doctor at Home ............................................................................. 57
Ophthalmologist ..................................................................................... 57
Gynecologist ........................................................................................... 58
Dental Work............................................................................................ 58
15. Staying Healthy ......................................................................................... 59
Resuming Activity .................................................................................. 59
Exercise................................................................................................... 59
High Risk Activity.................................................................................. 60
Swimming............................................................................................... 60
Sun Exposure .......................................................................................... 60
Returning to Work .................................................................................. 60
Driving .................................................................................................... 60
Smoking .................................................................................................. 61
Sexual Activity ....................................................................................... 61
Safer Sex ................................................................................................. 61
After Your Liver Transplant
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Birth Control........................................................................................... 61
Pregnancy ............................................................................................... 62
Alcohol & Other Toxins ......................................................................... 62
Toxic Chemicals ..................................................................................... 63
Drinking Water ....................................................................................... 63
Medic Alert ............................................................................................. 63
Travel ...................................................................................................... 63
16. Nutrition..................................................................................................... 65
Good Nutrition........................................................................................ 65
Weight..................................................................................................... 65
Tips for Intake Problems ........................................................................ 66
Ways to Increase Calories & Protein...................................................... 67
Tips for Losing Weight........................................................................... 69
Special Considerations............................................................................ 70
Basic Diet for High Blood Sugar............................................................ 72
17. Telephone Numbers .................................................................................. 76
18. Patient Resources ..................................................................................... 77
19. Test ............................................................................................................. 80
20. Glossary...................................................................................................... 88
After Your Liver Transplant
4
Early Post-Operative Period
AFTER THE TRANSPLANT
After your transplant, you will be in the intensive care unit. The time you spend in
intensive care varies a great deal depending on how ill you were before the
transplant and how well you are recovering after the operation.
In the intensive care unit you will be cared for by transplant surgeons as well as
doctors who specialize in caring for critically ill patients. The goal of the service
while caring for you in intensive care is to stabilize your condition enough so that
you may be safely transferred to a regular floor.
When your condition has stabilized, you will be transferred to the transplant patient
unit.
When transferred to the patient unit, the transplant team will monitor the function
of your liver, as well as complications such as infection, and medication side
effects. Your medications may be adjusted frequently during this time. Once on a
transplant floor, your transplant surgeons and physicians, along with others
involved in your care, will begin to plan for hospital discharge. The exact date of
your discharge can be difficult to predict in advance. Your physical recovery, as
well as the functioning of your new liver, and complications can all help your
doctors determine your date of discharge. Even when given a possible date of
hospital discharge, a fever or abnormality in a blood test may mean that your
discharge must be postponed.
The hospital transplant clinical specialist will see you daily during the week once
you are transferred from the intensive care unit. You will be informed of who your
post-operative transplant coordinator is; your post-operative coordinator is a
registered nurse who will be your primary contact in the transplant office. Your
coordinator will coordinate all care after discharge home
Laboratory tests will be done frequently, usually daily. These tests can detect
abnormalities of your new liver long before you show physical signs.
An elevation in your "liver numbers" does not necessarily mean that your liver is
not working or that you are experiencing rejection. Some numbers may fluctuate
in a wide range without much danger. Other numbers can indicate a lifethreatening condition if out of range. Feel free to discuss your results with the
transplant team so that the results may be appropriately interpreted.
After Your Liver Transplant
5
INCISIONS AND WOUNDS
After your transplant your staples usually remain in place for 3 weeks. However, it
may be necessary to remove some or all of the staples earlier. You may also have
staples in your axilla (armpit) and groin area for several weeks after the transplant.
If your surgical incision is not closed, your nurse will tell you how to care for your
wound and when you may shower.
SHOWERING AND BATHING
You may shower as soon as you are physically able to do so, unless you are told
otherwise. Do not sit in a bathtub until your incisions and wounds, including the
incision in your groin, are healed. If you are sponge bathing, remember to remove
your dressing before bathing and wash your skin around any wounds.
VITAL SIGNS
Temperature
Before leaving the hospital, it is important to obtain a thermometer and know how
to check your own temperature. Checking your temperature is the only accurate
way of knowing if you have a fever. If you are using an oral mercury
thermometer, be sure to leave it under your tongue for at least 3 minutes.
Remember to shake it down before each use and to clean it with warm water and
soap after each use. You may also use electronic digital thermometers.
Temperature sensing strips applied to the skin are not recommended. Check your
temperature at the same time each day for the first 3 months after transplantation
and any time that you feel warm or ill, have shaking chills, or have any other signs
of infection. A digital thermometer is usually included in your medication supply
for the first month.
Blood Pressure
The medications you take after your transplant may affect your blood pressure. It
is recommended that you buy a blood pressure cuff for home monitoring after
transplant, especially if you had problems with your blood pressure in the hospital.
If you were recently started on blood pressure medication, check your blood
pressure daily or as directed and record the results on the chart provided in this
packet. A blood pressure machine is usually included in your medication supply
for the first month. Call if your systolic number (top number) is over 160 or your
diastolic reading (bottom number) is over 90.
After Your Liver Transplant
6
BEFORE LEAVING THE HOSPITAL
For All Patients:
• The social worker will assist you in choosing a pharmacy where you will get
your prescriptions filled when discharged from the hospital.
• Complete test in back of liver book.
• Have coordinator review test once you have completed it.
• Inform your coordinator of where you will be staying and how to reach you, if
you are not planning to return to your home right away.
For Patients Not From Local Area:
• Arrange for someone to stay with you in the Westchester area while coming to
clinic.
• Decide where to stay while coming to clinic and make reservations.
For Patients From the Westchester area:
Arrange for transportation to clinic appointments (check with surgeon or
coordinator as to when you may drive again).
You may be eligible for assisted transportation. Please check with your social
worker to see if your insurance will cover this.
After Your Liver Transplant
7
CONTACTING YOUR DONOR FAMILY
Many transplant recipients have asked about writing to their donor's family.
Research by the National Donor Family Council has shown that most donor
families want to hear from the recipients of their loved ones' organs. You may
send a letter or card to the donor family. Bring this letter to your transplant
coordinator. Your coordinator will forward the letter on to the appropriate Organ
Procurement Organization.
Attach a separate note stating your name, type of transplant and date. Do not state
your name or hometown in the message. . You may call the Organ Donor
Network at 1(800)GIFT-4-NY with questions regarding donation.
TIPS TO PROLONG SURVIVAL AFTER TRANSPLANT
• Call coordinator with any new medications, prescription or over-the-counter.
Call even if new medicine is ordered by your doctor.
• Take your medication exactly as prescribed. Do not change it on your own.
• Keep adequate medications on hand. Call for refills before running out.
• Call your coordinator if you have a problem taking your medications.
• Make a list of current medications with dosages and frequencies to keep in
wallet.
• Know signs of infection and call coordinator for any fever over 101° or signs of
infection.
• Have doctor seeing you for a fever or infection call coordinator.
• Take antibiotics before any dental work.
• Avoid children vaccinated with oral polio vaccine.
• Call coordinator if exposed to chicken pox.
• Inform coordinator any time you are hospitalized.
• Inform coordinator of any change in your medical condition.
• Alert coordinator of any lymph gland swelling.
• Have blood tests as recommended and make sure coordinator receives the
results. Schedule regular check-ups with your local doctor.
• Avoid alcohol.
• Practice safe sex.
• Limit sun exposure. Use a sunscreen with at least a 15 SPF (sun protection
factor).
• Follow food safety guidelines.
REMEMBER IT IS YOUR RESPONSIBILITY TO HAVE YOUR
BLOODWORK CHECKED EVERY 1-2 MONTHS FOR THE REST OF
YOUR LIFE.
After Your Liver Transplant
8
MEDICATIONS
Now that your surgery is over, it may seem that the most difficult hurdle is over.
However, a successful recovery and continued function of your new liver depend
on a careful balance of your medications.
At home you will continue taking most of the medicines you began taking in the
hospital after your transplant surgery, especially the anti-rejection medications.
Your immune system recognizes your new liver as foreign and will try to reject it.
Therefore, your immune system must be controlled with medications. These
medications are called anti-rejection or immunosuppressant medications.
Immunosuppressants are medications that you MUST take daily for the rest of
your life. They are powerful drugs with many side effects. They must be taken
exactly as prescribed to maintain a delicate balance. Taking too little medication
will allow your immune system to destroy the new liver. However, taking too
much medication will alter your ability to fight off an infection and will increase
the likelihood of side effects. You must NEVER change your medication dose on
your own. Always check with your transplant coordinator first if you have a
question about your medication.
The transplant surgeons, along with your transplant coordinator and referring
doctor, will monitor your condition and change your medications as needed. Your
immunosuppressant medications [Prograf (tacrolimus/(FK506), Neoral
(Cyclosporine/Gengraf), Prednisone (Deltasone), Imuran (Azothioprine), and
Cellcept (RS, Mycophenolate) Rapamune (sirolimus)], should be adjusted only by
a transplant surgeon. It is important that you keep an adequate supply of your
immunosuppressant medications on hand. Your coordinator will contact both you
and your local doctor when we are prescribing a change in your
immunosuppressant medication. You or your local doctor should contact your
coordinator if you believe you are having side effects or reactions to your
medications.
If you ever forget to take a dose of your medications, contact your coordinator.
Taking your doses too closely together may cause damaging side effects. Also
contact your coordinator if you miss more than one dose of your
immunosuppressants due to vomiting, diarrhea (especially with Neoral), or any
other reason. In general, you have about a 4-hour window of time if you miss your
dose. For example, if you miss your 10 a.m. dose, you have until 2 p.m. to take it.
If it is past 2 p.m. just skip that dose and get back on track with your evening dose.
After Your Liver Transplant
9
Remember to keep your medications with you when traveling; do not check your
medications in your luggage. You may also want to divide your medications in
two separate areas when traveling so that you will be prepared if any are lost or
stolen.You may change the times you take your medication for convenience. For
example, if you have been taking your Prograf' or Neoral at 8 a.m., you may take it
at 9 a.m., 10 a.m., or 7 a.m. Keep in mind that your blood tests will need to be
drawn before your Prograf' or Neoral is taken. Make the change all at once.
If you are traveling to a different time zone, check with your coordinator if there is
more than a three-hour difference from your area. Your medication schedule may
need to be adjusted.
Remember to check with your coordinator before taking any over-the-counter
medications--this includes herbal preparations. If your local doctor starts or stops a
medication, notify your coordinator. A new medication may affect your liver or
kidneys, your ability to fight infection, or the way in which your other medications
are absorbed.
PRESCRIPTIONS
When you are discharged from the hospital, the surgeons will give you
prescriptions for the medications you will be taking.
If you choose to use a mail order pharmacy that automatically sends your
prescriptions monthly, you will need to notify the pharmacy if any medications are
discontinued.
If your local doctor or a specialist prescribes a new medication for you, that doctor
must call it to your pharmacy to assure correct prescription.
Even if your health insurance plan covers medications, we recommend that you
comparison shop for the lowest prescription price. Many insurance plans have a
life time limit.
As of July 1995, Medicare recipients will receive 80% of immunosuppressant
medication coverage for 36 months after transplantation. You may contact your
transplant social worker if you have questions related to medication coverage.
After Your Liver Transplant
10
MEDICATION CROSS REFERENCE TABLE
Brand Name
Generic Name
Actigall..................................................................... Ursodiol
Alloremed................................................................. Allopurinol
Avlosulfon................................................................ Dapsone
Axid.......................................................................... Nizatidine
Azulfidine................................................................. Sulfasalazine
Bactrim..................................................................... Trimethoprim Sulfa
Barbita ...................................................................... Phenobarbital
Capurate ................................................................... Allopurinol
Carafate .................................................................... Sucralfate
Catapres.................................................................... Clonidine Hydrochloride
Cellcept .................................................................... Mycophenolate
Cipro......................................................................... Ciprofloxacin
Colace....................................................................... Docusate
Coumadin ................................................................. Warfarin Sodium
Diabeta ..................................................................... Glyburide
Digoxin..................................................................... Lanoxin
Dilantin..................................................................... Phenytoin
Euglucon .................................................................. Glyburide
Feosol ....................................................................... Ferrous Sulfate
Flagyl........................................................................ Metronidazole
Florinef..................................................................... Fludrocortisone Acetate
Gardinal.................................................................... Phenobarbital
Imuran ...................................................................... Azathioprine
Intron ........................................................................ Interferon Alfa 2b
Lasix......................................................................... Furosemide
Lopurin..................................................................... Allopurinol
Luminal .................................................................... Phenobarbital
Mag Ox 400, Maox, Par Mag, Uro-Mag ................. Magnesium Oxide
Micronase................................................................. Glyburide
Mycelex.................................................................... Clotrimazole
Mycostatin................................................................ Nystatin
Nebupent .................................................................. Pentamidine Isethionole
Neupogen ................................................................. Filgrastim (G-CSF)
Nilstat ....................................................................... Nystatin
Pepcid....................................................................... Famotidine
Pentam 300............................................................... Pentamidine Isethionole
Prednisone ................................................................ Deltasone
Prilosec..................................................................... Omeprazole
Procardia .................................................................. Nifedipine
After Your Liver Transplant
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Procrit....................................................................... Epoetin Alfa
Prograf...................................................................... FK-506/Tacrolimus
Reglan ...................................................................... Metoclopramide Hydrochloride
Sandimmune............................................................. Cyclosporine
Septra........................................................................ Trimethoprim, Sulfamethoxazole
Solfoton .................................................................... Phenobarbital
Ursodiol.................................................................... Actigall
Zovirax ..................................................................... Acyclovir
After Your Liver Transplant
12
IMMUNOSUPPRESSANT MEDICATIONS
PREDNISONE (DELTASONE®)
USES: Prednisone is a steroid immunosuppressant used to prevent or treat
rejection. It may be used in low doses for long-term immunosuppression, or in
higher doses for treatment of rejection.
ACTION: Prevents rejection by suppressing immune system.
HOW TO TAKE: Prednisone is available in many strengths including 20 mg, 10
mg, and 5 mg. Usually 5 mg tablets are prescribed, regardless of your dose, so that
you may take the right amount if your dose is decreased or increased.
Never take Prednisone on an empty stomach. It is usually best to take it in the
morning after breakfast. If your Prednisone is prescribed more than once a day, be
sure to eat before taking the other doses.
MISSED DOSE: If you ever forget to take a dose of Prednisone, call your
coordinator for advice.
Notify your coordinator if you are unable to take Prednisone due to vomiting,
inability to swallow, or other reasons. You can receive Prednisone intravenously.
SIDE EFFECTS:
• Stomach upset - Be sure to take Prednisone after eating to avoid this.
• Hyperglycemia (high blood sugar) - This will be checked with your regular
laboratory results. It may be necessary to avoid concentrated sweets (see
nutrition section) and to take medications to lower your blood sugar. If your
Prednisone dose is increased to treat rejection or if you receive intravenous
steroids (solumedrol or solucortef) to treat rejection, your blood glucose may be
temporarily elevated. If the blood sugar levels are too high, you may need to be
hospitalized. Report symptoms of high blood sugar immediately. Signs of high
blood sugar include thirst, excessive urination, fatigue and blurred vision.
• Swelling - You may notice swelling in the face, feet, or hands.
• Hypertension (high blood pressure) - Prednisone may effect the way your body
retains fluid and gets rid of sodium (salt). Refer to the nutrition section of this
book for lowering sodium in your diet.
• Mood swings - Prednisone may cause a depressed mood. High doses used to
treat rejection may cause euphoria (an inappropriate feeling of well-being) that
wears off in a few days. Be aware that these feelings are usually temporary.
• Insomnia (difficulty sleeping) - This effect occurs more often with higher doses.
After Your Liver Transplant
13
• Osteoporosis (weakening of bones) - This side effect occurs after long-term use
of Prednisone. It is important to get the necessary calcium every day, either in
your diet or through a supplement. This is especially important for women.
Your blood calcium level does not indicate whether your bones are receiving
sufficient calcium. Your body will take calcium from your bones to keep a
normal calcium level in the blood.
• Cataracts/Glaucoma - These effects can occur after long-term Prednisone use.
If you have a history of either of these or are diagnosed with either, alert your
coordinator to see if your Prednisone dose can be reduced or eliminated.
• Steroid dependency - Your body makes a hormone that is very similar to
Prednisone. For this reason, your body may stop making this hormone while
you are on Prednisone. Your Prednisone dose should not be stopped suddenly
but reduced gradually. Sudden withdrawal cannot only cause fatigue and other
symptoms, but can be life threatening. Stopping your Prednisone dose usually
is particularly risky if you are under extreme stress (such as infection or
surgery). Notify your doctor that you are on, or were on, steroids.
• Infections - Your ability to fight infection is decreased with Prednisone.
Infections may also be masked. Report any signs of infection to your transplant
coordinator (see Infection chapter). Your Prednisone dose may need to be
reduced.
• Slowed wound healing.
• Skin changes such as bruising and rashes - Skin changes will improve as the
dose is reduced. You may burn more easily in the sun. We recommend
avoiding excessive sunlight. Use a sunscreen with at least a 15 SPF (sun
protection factor) if you must be in the sun. You may also want to wear a hat
for added protection. Patients who are immunosuppressed have greater risk of
getting skin cancer. Report any changes in a mole or new growth to your
coordinator and see your doctor or dermatologist to have it examined.
MEDICATION INTERACTIONS: Notify your coordinator if any medications are
discontinued or any new medications prescribed.
HOW TO STORE: Store at room temperature.
PRECAUTIONS: Never stop or reduce the dosage of Prednisone unless your
transplant surgeon or coordinator tells you to. Sudden withdrawal of Prednisone
can be life threatening. You may be required to be on an antacid during the period
you are on steroids to prevent an ulcer.
Take exactly as prescribed. It is best to take Prednisone in the morning to decrease
side effects.
AVAILABILITY: Prednisone is routinely stocked in most pharmacies.
After Your Liver Transplant
14
NEORAL ® (CYCLOSPORINE/GENGRAF®)
USES: Cyclosporine is an immunosuppressant that has been used since the early
1980s to prevent organ rejection. It is available in either a liquid or capsule form.
A new formation, Neoral, is thought to have better absorption characteristics.
ACTION: Cyclosporine prevents rejection by inhibiting T-lymphocyte cells,
specific cells of the immune system.
HOW TO TAKE: Cyclosporine capsules (Neoral, Gengraf) are available in 100
mg and 25 mg strengths. Capsules should be swallowed whole. Take at the same
time each day. If you take it twice daily, your doses should be 12 hours apart.
Liquid cyclosporine is available in 50 ml (5000 mg) bottles and is good for 2
months once opened (100 mg is equal to 1 ml). It can be diluted in milk, chocolate
milk, or orange juice. Stir well and drink immediately. Use a glass container, not
a Styrofoam cup. Add more juice or milk to the glass and drink it to ensure that
you are getting the full dose. Do not rinse the syringe in water.
Check with your coordinator if you want to change the time of your dose. If you
are traveling to different time zones, contact your coordinator for advice on when
to take your dosage. If the time zone difference is 3 hours or less, such as going to
the West Coast, make the change all at once.
MISSED DOSES: If you ever forget to take a dose of Neoral, Gengraf and it is less
than 4 hours since the missed dose, take your missed dose and get back on
schedule with the next dose. If it is greater than 4 hours, call your coordinator for
advice. Taking the missed dose too closely to the following dose can be dangerous
and produce side effects.
If you miss several doses of Neoral, Gengraf because of vomiting, surgery,
inability to swallow, or other reasons, you can receive cyclosporine in the
intravenous form. Tell your coordinator if you are having problems taking your
cyclosporine. If you need to receive your cyclosporine intravenously, your local
doctor can contact your coordinator for the correct dose.
SIDE EFFECTS:
• High Blood Pressure - You will need to obtain a blood pressure machine to
monitor your blood pressure at home. This is especially important if you are
taking medication to control your blood pressure.
• Increased Hair Growth -- Female patients may want to try Surgicream or any
other over the counter preparation for removal of facial hair. Test this on other
skin 24 hours before using on the face.
After Your Liver Transplant
15
• Swollen or Inflamed Gums - Tell your coordinator if you have swollen gums.
You may require more dental care, such as increased brushing and flossing and
more frequent dental visits. This side effect is usually seen with higher doses of
Neoral. This side effect may improve as your dose is reduced.
• Numbness/Tingling of the Hands or Feet - This side effect can be a sign that
your cyclosporine level is high. If your medication is causing this side effect,
the symptoms should improve as your medication dose is reduced.
• Sinus Drainage/Runny Nose - This effect may be more readily seen at higher
doses. This should improve as your dose is reduced.
• Hot Flashes/Sweating - This symptom may occur several hours after each dose.
This will improve as the dose is reduced.
• Elevated Kidney Numbers - Your creatinine and BUN will be monitored in
your regular laboratory studies to prevent damage to your kidneys. For this
reason, it is important to always check with your coordinator before taking any
new medications that could possibly also affect your kidney function.
• Increased Risk of Infection - See " Infection" chapter. Side effects that include
infection are more likely to occur at high doses. You need not report an
isolated symptom, but do report increases or trends of the above side effects to
your coordinator.
MEDICATION INTERACTIONS: Many medications may affect your
Neoral/Gengraf absorption. For this reason, it is extremely important that you
notify your coordinator of any medication changes. If it is necessary for you to
have a medication that affects your Neoral/Gengraf absorption or metabolism, the
transplant surgeons may recommend that your Neoral/Gengraf dose be changed
and more frequent blood tests may be ordered to check your cyclosporine levels.
BLOOD LEVELS: Cyclosporine levels measure the amount of cyclosporine
medication in your blood. Blood samples for this test should be drawn
approximately one-half hour before your next dose is due. This blood test will be
requested whenever your regular laboratory tests are to be done. This result helps
the surgeons manage your care. Check with your coordinator for blood drawing
times if your dose is not twice a day.
HOW TO STORE: Store cyclosporine capsules at room temperature and keep
them in the foil packets until you are ready to take them. Do not refrigerate or
freeze the liquid cyclosporine. Store at room temperature away from direct
sunlight. Liquid cyclosporine is good for two months once opened. Check the
expiration date on the box and dispose of any unused solution after the expiration
date.
PRECAUTIONS: Never stop this medication unless advised to do so by a
transplant surgeon.
After Your Liver Transplant
16
You should wear a medical alert bracelet or pendant (such as Medic Alert) that
indicates "Taking immunosuppressant."
Take exactly as prescribed, at the same time each day.
AVAILABILITY: Not all pharmacies stock cyclosporine. Call your pharmacist at
least 5 working days before you need to fill a prescription to make sure the
medication is in stock.
After Your Liver Transplant
17
PROGRAF® (TACROLIMUS/FK506)
USES: Prograf is a potent immunosuppressant medication used to prevent or treat
organ rejection. It is used for long-term immunosuppression. It should only be
managed by a transplant surgeon who is familiar with this medication.
ACTION: Prograf prevents rejection by inhibiting T-lymphocyte cells, specific
cells of the immune system.
HOW TO TAKE: Prograf is available in 1 mg (white) capsules , 5 mg (pink)
capsules and 0.5 mg (yellow) capsules. The dose is usually decreased with time.
Your dose must be taken exactly as prescribed.
Prograf should be taken on a regular schedule at the same time each day. Usually it
is taken twice a day 12 hours apart, such as 8 a.m. and 8 p.m. Occasionally it is
taken only once a day (taken at the same time each day), or as often as three times
a day (taken 8 hours apart, such as 7 a.m., 3 p.m., and 11 p.m.).
Check with your coordinator if you want to change the time of your dose. If you
are traveling to different time zones, contact your coordinator for advice. If the
time zone difference is 3 hours or less, such as going to the West Coast, you can
switch to Pacific Time all at once.
MISSED DOSES: If you ever forget to take a dose of Prograf, call your
coordinator for advice. If it is less than 4 hours since the missed dose, take your
dose and get back on schedule with the next dose. Call your coordinator if it is 4
hours or more from the last dose. Taking the missed dose too closely to the
following dose can be dangerous and may produce toxic effects. If you miss
several doses of Prograf due to vomiting, surgery, inability to swallow, or other
reasons, call your coordinator for advice.
SIDE EFFECTS:
• Increased risk of infection - see 'Infection' chapter.
• Burning or tingling of the mouth, hands, or feet - This is more likely to occur
with higher doses. This will improve as the dose is reduced.
• Insomnia (difficulty sleeping) - This will usually improve as your dose is
reduced.
• Headache -- You may experience headaches if your dose is increased to treat
rejection. Contact your coordinator for any undiagnosed headache lasting over
24 hours or accompanied by fever or a stiff neck.
• High blood sugars - Your blood sugar (glucose) will be checked with your
regular laboratory studies. Some patients require oral medication or insulin
After Your Liver Transplant
18
•
•
•
•
•
•
•
injections for a period of time to control their glucoses. Report signs of high
blood sugar, such as excessive thirst, frequent urination, and fatigue to your
coordinator or doctor.
Hypertension (High Blood Pressure)
Nausea and vomiting - Report unexplained nausea and vomiting that lasts more
than 24 hours.
Increased potassium - This may require restricting the amount of potassium in
your diet and/or using medication to lower your potassium (see Nutrition
Section).
Decreased magnesium - it may be necessary for you to take a magnesium
supplement
Increased risk of cancer - Patients who are immunosuppressed are more likely
to develop skin cancers. Report any changes in a mole or new growth to your
coordinator and see your doctor or dermatologist to have it examined. You
should check or be checked yearly for skin growths. We recommend avoiding
excessive sunlight. Use a sunscreen with at least a 15 SPF (sun protection
factor) if you must be in the sun. You should wear a hat for added protection.
Growths - The immunosuppressants that you take to prevent your body from
destroying your liver can allow other growths to develop. These growths can
be internal or may be external, such as a swollen gland in the neck, arm pit,
tonsil area, or groin. Any swelling should be reported to your coordinator
immediately. A biopsy is necessary to determine if the swelling is a swollen
lymph gland or is due to post-transplant lymphoproliferative disorder (PTLD).
PTLD can progress from a benign, noncancerous, swelling to a malignant
cancerous lesion, if not diagnosed and treated quickly. Do not assume that a
swollen gland is normal or a sign of infection. PTLD should be managed only
by a transplant expert. You may be asked to return to Westchester Medical
Center for evaluation of any swelling.
Rash - Report any new rashes.
MEDICATION INTERACTIONS: Magnesium oxide or other antacids should not
be taken within 2 hours of Prograf. If, for example, you take Prograf at 8 a.m.,
take the Magnesium oxide at 10 a.m. or later. Many medications may affect your
Prograf absorption. For this reason, it is extremely important that you notify your
coordinator of any medication changes. If you need to take a medication that may
affect your Prograf absorption or metabolism, the transplant surgeons may
recommend that the Prograf dose be changed. More frequent blood tests to
monitor tacrolimus levels may be ordered.
BLOOD LEVELS: Tacrolimus levels measure the amount of Prograf medication
in your blood. This blood test should be drawn approximately one half hour before
your next dose of Prograf is due. This blood test will be requested whenever your
regular laboratory tests are to be done. This result helps the surgeons manage your
After Your Liver Transplant
19
care. Check with your coordinator for blood draw times if your Prograf dose is not
twice a day.
HOW TO STORE: Store at room temperature.
PRECAUTIONS: Never stop taking this medication unless advised to do so by a
transplant surgeon.
You should wear a medical alert bracelet or pendant (such as Medic Alert) that
indicates "Taking immunosuppressant."
•
Take exactly as prescribed, at the same times each day.
AVAILABILITY: Not all pharmacies stock Prograf. Call your pharmacist at least
5 working days before you need to fill a prescription to make sure the medication
is in stock.
After Your Liver Transplant
20
CELLCEPT® (RS/MYCOPHENOLATE)
USES: Cellcept is an immunosuppressant used in combination with other
immunosuppressive medications to prevent organ rejection.
ACTION: Prevents rejection by suppressing immune system.
HOW TO TAKE: Cellcept is available in blue/brown 250 mg. capsules and purple
500 mg tablets. It is usually prescribed to be taken twice a day.
They should not be opened or crushed. If you are to take a gram (1,000 mg) this is
equal to four 250 mg. capsules or two 500 mg tablets.
MISSED DOSE: If you forget to take your Cellcept, contact your coordinator for
advice. If it is less than 4 hours, take your dose and get back on schedule with
your next dose. Call your coordinator if it is 4 hours or more from the last dose.
Taking the missed dose too closely to the following dose can be dangerous and
produce toxic effects.
SIDE EFFECTS:
• Diarrhea. Alert your coordinator if it continues for more than 24 hours or is
bloody.
• Vomiting. Report unexplained vomiting lasting more than 24 hours to your
coordinator.
• Low white blood cell count. Your white blood cell count will be monitored on
your regular laboratory tests. Should your dose need to be stopped or changed,
your coordinator will contact you.
MEDICATION INTERACTIONS: Many medications may cause some changes in
absorption. Alert your coordinator of any changes made by other doctors with
acyclovir, antacids with aluminum or magnesium, or oral contraceptives.
HOW TO STORE: Store at room temperature.
PRECAUTIONS: Never stop taking this medication unless advised to do so by
your transplant surgeon.
You should wear a medical alert bracelet or pendant (such as Medic Alert) that
indicates "Taking immunosuppressant."
•
Take exactly as prescribed, at the same times each day.
AVAILABILITY: Many pharmacies do not stock Cellcept. Alert your pharmacist
at least 5 working days before filling a prescription.
After Your Liver Transplant
21
IMURAN® (AZATHIOPRINE)
USES: Imuran is an immunosuppressant that may be used with other
immunosuppressive medications to prevent organ rejection.
ACTION: Prevents rejection by suppressing the body's immune system.
HOW TO TAKE: Imuran is available in 50 mg tablets. Take the Imuran dose the
same time each day.
MISSED DOSES: If you forget to take a dose of Imuran, contact your coordinator
for advice if it is more than 12 hours since your last dose.
SIDE EFFECTS:
• Low white blood cell count - Your white blood cell count will be monitored on
your regular laboratory tests. Should your count fall lower than normal, you
may be instructed to withhold your dose until your white blood count has
returned to normal. The white blood cell count should improve by lowering the
dose.
• Skin lesions - Notify your coordinator.
• Thinning of hair - Notify your coordinator.
• Increased risk of infection - See "Infection" chapter.
MEDICATION INTERACTIONS: Notify your coordinator of any medication
changes. Allopurinol (Zyloprim), a medication used to treat gout, can produce
toxic effects when taken with Imuran. Check with your coordinator before taking
any new medication.
HOW TO STORE: Store at room temperature.
PRECAUTIONS: Never stop taking this medication unless advised to do so by a
transplant surgeon.
• Take exactly as prescribed.
AVAILABILITY: Call your pharmacist at least 5 days before filling a prescription.
After Your Liver Transplant
22
OTHER MEDICATIONS
PROPHYLACTIC MEDICATIONS
Immunosuppressive medication interferes with your body's natural ability to fight
infections. After your transplant, you may be taking several medications to
prevent some common infections, which are listed below.
Your immunosuppressant medications can make you susceptible to pneumocystis
carinii pneumonia, which can be fatal. The transplant surgeons will prescribe
medication such as Bactrim® (trimethoprim sulfa), Dapsone (avlosulfon), or
Mepron to prevent this pneumonia. Bactrim is usually prescribed daily or every
other day; if every other day, you may take it on a Monday, Wednesday, Friday
schedule so that it is easier to remember. Dapsone and Mepron are given daily. .
You may have received a pneumovax injection to prevent pneumonia before your
transplant; pneumovax is effective against one type of bacteria, but not
pneumocystis pneumonia.
Valcyte (valganciclovir HCL) is an antiviral medication that may be prescribed for
several months to help prevent viral infections. If you develop cold sores on your
lips or a rash due to herpes zoster (shingles), you may need Acyclovir (Zovirax).
Nystatin (Mycostatin) or clotrimazole (Mycelex) may be prescribed for a period of
time after your transplant to prevent a fungal infection in your mouth and throat. If
you notice sores in your mouth or a white film on your tongue, or if you have
difficulty swallowing, you may need to have this antifungal medication restarted or
increased. This fungal infection may also occur after treatment with antibiotics.
After Your Liver Transplant
23
BACTRIM® (SULFAMETHOXAZOLE WITH TRIMETHOPRIM)
USES: Bactrim is used to prevent as well as treat pneumocystis carinii pneumonia
(PCP). PCP can be fatal in immunosuppressed patients.
HOW TO TAKE: Bactrim may be taken on a regular basis, either daily or every
other day. If it is to be taken every other day, you may take it Mondays,
Wednesdays, and Fridays. Take it with food or milk if you experience an upset
stomach.
MISSED DOSE: If you miss a dose of Bactrim, take it as soon as you remember,
unless it is almost time for the next dose. If it is time for the next dose, skip the
missed dose and resume your normal schedule. Do not take an extra dose.
SIDE EFFECTS:
• Upset Stomach- take with food or milk if this occurs.
• Rash - notify your coordinator if you develop a rash.
• Sensitivity to sunlight - limit exposure in the sun. Use a sunscreen with at least
a 15 sun protection factor (SPF) that does not contain PABA oil. PABA can
interfere with the action of Bactrim.
MEDICATION INTERACTIONS: Notify your coordinator of any medication
changes. Do not take a new medication without first checking with your
coordinator.
HOW TO STORE: Store at room temperature.
PRECAUTIONS: Do not stop taking this medication unless advised to do so by the
transplant service. Notify your doctor if you have an allergy to sulfa drugs.
AVAILABILITY: Bactrim is available from most pharmacies.
After Your Liver Transplant
24
MEPRON (ATOVAQUONE)
USES: Mepron is used to prevent as well as treat pneumocystis carinii pneumonia
(PCP). PCP can be fatal in immunosuppressed patients. Mepron is used for
patients who cannot tolerate Bactrim.
HOW TO TAKE: Mepron may be taken daily and should be taken with food.
MISSED DOSE: If you miss a dose of Mepron, take it as soon as you remember.
Do not take a double dose on the same day.
SIDE EFFECTS:
• Nausea, diarrhea, upset stomach (take with food)
• Increased blood sugar
• Rash-notify your coordinator if you develop a rash
• Fever
MEDICATION INTERACTIONS: Notify your coordinator of any medication
changes. Do not take a new medication without first checking with your
coordinator.
HOW TO STORE: Store at room temperature.
PRECAUTIONS: Do not stop taking this medication unless advised to do so by
the transplant team.
AVAILABILITY: Mepron is available from most pharmacies.
After Your Liver Transplant
25
VALCYTE (VALGANCICLOVIR)
USES: This medication is used to treat and prevent viral infections especially
Cytomegalovirus or CMV.
HOW TO TAKE: Take this medication as directed, spaced evenly throughout the
day. Take this medication with food.
MISSED DOSE: Do not double the dose if missed, but take it as soon as
remembered. If it is almost time for the next dose, skip the missed dose and
resume your regular dosing schedule.
SIDE EFFECTS:
• Nausea, vomiting, diarrhea, abdominal pain-these symptoms usually
disappear as your body adjusts to the medication. If these symptoms persist,
please tell your coordinator.
• Headache
• Tingling of the hands and feet-tell your coordinator
• Rash-notify your coordinator
• Low blood counts-your transplant team will monitor this
MEDICATION INTERACTIONS: Notify your coordinator of any medication
changes, either prescription or over the counter.
HOW TO STORE: Store at room temperature.
PRECAUTIONS: Take exactly as prescribed.
AVAILABILITY: Most pharmacies stock Valcyte.
After Your Liver Transplant
26
DAPSONE (AVLOSULFON®)
USES: Dapsone is used to treat and prevent pneumocystis carinii pneumonia in
immunosuppressed patients who cannot take Bactrim.
HOW TO TAKE: Take daily as directed. It is important to continue this
medication as long as you are taking immunosuppressants.
MISSED DOSES: If you should miss a dose, take it as soon as remembered, unless
it is nearly time for the next dose. If it is time for the next dose, skip the missed
dose and resume your normal schedule. Do not take an extra dose.
SIDE EFFECTS:
•
•
•
•
•
•
Weakness - notify your coordinator.
Dizziness - notify your coordinator.
Tingling in the hands or feet - notify your coordinator.
Yellow eyes or skin - notify your coordinator.
Stomach upset - take with food or milk if this occurs.
Rash - notify your coordinator.
MEDICATION INTERACTIONS: Notify your coordinator of any medication
changes, either prescription or over-the-counter. Do not take any new
prescriptions without checking with your coordinator.
HOW TO STORE: Store at room temperature, away from heat and light.
PRECAUTIONS: Never stop taking this medication unless advised to do so by the
transplant service. If you have a known allergy to sulfa medications, such as
Bactrim, you may be given this drug. A small number of patents who are allergic
to sulfa drugs are also allergic to Dapsone. Notify your coordinator if you develop
a rash while taking Dapsone.
AVAILABILITY: Dapsone may not be stocked in your pharmacy. Call your
pharmacist at least 5 days in advance of filling your prescription.
After Your Liver Transplant
27
MYCOSTATIN (NYSTATIN SUSPENSION)
USES: This medication is used to treat and prevent fungal infections in the mouth.
HOW TO TAKE: Swish the liquid in your mouth for as long as possible before
swallowing. You may gargle before swallowing. Take after other medications and
after meals. It is preferable that you do not eat or drink for 30 minutes after taking
this medication. Be sure your mouth is clean from foods before taking Mycostatin.
MISSED DOSE: If you miss a dose, take it as soon as remembered, unless it is
nearly time for the next dose. If it is time for the next dose, skip the missed dose
and resume your normal schedule.
SIDE EFFECTS:
• Nausea, vomiting, or diarrhea - Tell your coordinator if these symptoms persist.
These symptoms usually resolve as your body adjusts to the medication.
MEDICATION INTERACTIONS: None have been reported but tell your
coordinator before taking any new prescriptions or over-the-counter medications.
HOW TO STORE: Store at room temperature, do not freeze.
PRECAUTIONS: Take as prescribed.
AVAILABILITY: Most pharmacies stock Mycostatin, but call your pharmacist at
least 5 working days before filling a prescription to be sure.
After Your Liver Transplant
28
ANTI-ULCER MEDICATIONS
An anti-ulcer medication may be prescribed to prevent or treat an ulcer that may be
caused by Prednisone. As your Prednisone dose is decreased or stopped, the
surgeons may also stop the anti-ulcer medication.
After Your Liver Transplant
29
PRILOSEC® (OMEPRAZOLE)
USES: Used to treat and prevent ulcers.
HOW TO TAKE: Swallow capsules whole; do not open or crush them.
MISSED DOSES: If you miss a dose, take it as soon as remembered unless it is
near the time for your next dose. If it is time for your next dose, skip the missed
dose and resume your normal schedule. Do not take an extra dose.
SIDE EFFECTS:
• Diarrhea - notify your coordinator. Headache - notify your coordinator.
Vomiting - notify your coordinator.
• Rash - notify your coordinator.
• Back pain - notify your coordinator.
MEDICATION INTERACTIONS: Inform your coordinator of any medication
changes, either prescription or over-the-counter. Ketoconagile and Ciron may not
be well absorbed while taking Prilosec. Dilantin, coumadin, and valium may
remain in your blood longer than normal.
HOW TO STORE: Store Prilosec at room-m temperature.
AVAILABILITY: Most pharmacies stock Prilosec.
After Your Liver Transplant
30
OTHER MEDICATIONS
This group of medications includes those that are ordered to normalize the levels of
minerals in your blood.
FLORINEF® (FLUDROCORTISONE)
USES: Florinef decreases potassium in your blood. Some of the medications you
take can raise the potassium level in your blood to a dangerous level. Florinef
lowers your potassium by allowing your kidneys to keep sodium and release
potassium into your urine. It is important that the potassium level in your blood
remain in the normal range so that your muscles work properly, especially your
heart muscle.
HOW TO TAKE: Take exactly as directed. Do not stop this medication on your
own or take more than prescribed.
MISSED DOSE: Take any missed dose as soon as possible but not if it is almost
time for the next dose. If it is time for the next dose, skip the missed dose and
resume your regular schedule. Do not "double up' the dose.
SIDE EFFECTS:
•
•
•
•
•
•
•
Swelling of hands or feet - notify your coordinator.
Rapid weight gain/water retention - notify your coordinator.
Unusual bruising - notify your coordinator.
Skin rash - notify your coordinator.
Severe or continuous headaches - notify your coordinator.
Weakness - notify your coordinator.
Joint pain - notify your coordinator.
MEDICATION INTERACTIONS: Notify your coordinator of any medication
changes, either prescription or over-the-counter.
HOW TO STORE: Store at room temperature, away from moisture and sunlight.
PRECAUTIONS: Take exactly as prescribed. Do not stop this medication on
your own.
AVAILABILITY: Most pharmacies stock Florinef.
After Your Liver Transplant
31
MAG-OX® (MAGNESIUM OXIDE)
USES: Mag-ox is used to treat and prevent low levels of magnesium in your
blood. Some of the other medications you take can lower your magnesium level.
It is important that your magnesium stay in a normal range so that your nerves and
muscles work properly.
HOW TO TAKE: Do not crush or chew tablets. Take with a full glass of water.
Do not take within 2 hours of Prograf (FK506/Tacrolimus).
MISSED DOSE: If you miss a dose, take it as soon as remembered. Do not take it
if it is near the time for the next dose. Instead skip the missed dose and resume
your usual schedule.
SIDE EFFECTS:
Diarrhea - Notify your coordinator.
MEDICATION INTERACTIONS: Avoid taking within 1 hour of enteric-coated
(coated to prevent breakdown in the stomach) medications, within 1 to 2 hours of
tetracycline or quinotone antibiotics, and within 2 hours of Prograf
(FK506/Tacrolimus). These other medications may not be absorbed if taken with
Mag-ox.
HOW TO STORE: Store at room temperature.
PRECAUTIONS: Take exactly as prescribed.
AVAILABILITY: Most pharmacies stock Mag-ox.
After Your Liver Transplant
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OVER-THE-COUNTER MEDICATION RECOMMENDATIONS
Headache, fever, body aches
Acetaminophen (Tylenol)
Sneezing, itching or running nose
Chlorpheniramine (Chlor-trimetro)
Brompheniramine (Dimetapp)
Nasal and sinus congestion
Oxymetazoline (Afrin spray)
Sodium chloride0.9% (Ocean Spray)
Phenylephrine (Neosynephrine)
Chest Congestion
Guaifenesin (Robitussin)
Productive Cough
Guaifenesin (Robitussin)
Dry Cough
Dextromethorphan (Delsym)
Sore Throat
Chloroseptic lozenges or spray (Spec-T)
Lozenges (COLD-EEZE)
Constipation
Psyllium (Metamucil)
Docusate (Colace, PeriColace, Glycerin)
Bisacodyl (Dulcolax) suppositories
Diarrhea
Loperamide (Immodium AD)
Insomnia
Diphenhydramine (Benedryl)
Doxylamine (Unisom)
Stomach Upset
Calcium carbonate (TUMS)
Famotidine (Pepcid AC)
Gas
Simethicone (Gax-X)
After Your Liver Transplant
33
OVER-THE-COUNTER MEDICATIONS TO AVOID
• Pseudoephedrine
• Cough syrup with sugar if patient is diabetic
• Nyquil due to high alcohol content
• Magnesium-based medications and aluminum-based products for patients
with renal impairment (milk of magnesia, Maalox, Pepto Bismol)
• Tagamet
• Beano if patient is diabetic
• Chronic use of non-steroidal anti-inflammatory agents (Motrin, Advil)
After Your Liver Transplant
34
REJECTION
Rejection is your body's way of recognizing your donated liver as foreign and
attacking it. If rejection is diagnosed and treated early, it can usually be reversed.
Some important facts about rejection:
• Having rejection does not mean you will lose your liver.
• You may feel perfectly well while you are having rejection.
• Rejection may be acute, occurring suddenly.
• Rejection may be chronic, occurring slowly over time.
• If not treated, rejection will worsen.
• Rejection can occur at any time.
To increase the odds in your favor for early detection of rejection:
• Have your lab tests as recommended by the transplant team.
• Assure that your transplant coordinator receives the results promptly.
• Take your medications as prescribed.
• Report signs of rejection immediately.
Signs of liver rejection include:
• Elevated liver numbers - total bilirubin, SGPT (ALT), SGOT (AST), GGTP.
• Fatigue.
• Fever.
• Abdominal pain or tenderness.
• Dark-colored urine.
• Light colored stool.
• Yellow eyes.
• Yellow skin.
• Ascites (fluid in the abdomen)
• Itching
Elevated laboratory results can indicate a possible rejection but only a liver biopsy
can determine if you are having rejection. Other factors can cause your liver
enzymes to be elevated. For this reason, treatment of rejection should be managed
only by the transplant team. The transplant surgeons may ask you to come to
Westchester Medical Center for a biopsy to diagnose and treat you promptly. Your
symptoms and test results will help the surgeon make this judgment. Your surgeon
will determine whether these tests can be done at a hospital near your home or
whether you will need to return to Westchester Medical Center. If the surgeons
think that it would be life threatening to delay diagnosis and treatment, they will
ask you to return to Westchester Medical Center immediately.
After Your Liver Transplant
35
We recommend that you have a plan in place should you need to return to
Westchester Medical Center for this or other reasons. Such a plan would include
having extra money for travel expenses and transportation and making
arrangements for the care of your children, other dependents, or pets while you are
away.
For patients who also received a kidney transplant, signs of rejection include:
• Decreased urine output
• Increased blood pressure
• Weight gain
• Fluid retention
• Fatigue
• Fever
• Increased creatinine level
• Pain or tenderness near transplanted kidney
After Your Liver Transplant
36
LABORATORY TESTS
If you are not from the Westchester area, you will need to choose a laboratory near
your home where you will have necessary blood tests when you are discharged.
This may be in a hospital, a free-standing lab, or your doctor's office. If you are
not sure where to go for lab tests, ask your coordinator for recommendations. Also
remember to check with your insurance provider as it may be necessary for you to
use a particular laboratory.
When you are discharged from clinic (out-of-town patients), your transplant
coordinator will meet with you and give you a lab schedule to follow. Call your
coordinator the day after the first set of lab tests at home to assure that they were
received. The lab test results should be faxed to our office at (914) 493-1097.
They may be sent by mail after the first two weeks at home. However, the lab test
results are received and reviewed more quickly if faxed or phoned to our office.
Either your laboratory staff, or your doctor's office staff can relay the results to us.
Ask your coordinator when the frequency of having laboratory tests can be
decreased. You will have lab tests once or twice a week for several weeks after
discharge, depending on your condition. The frequency of testing is decreased
with time if your liver functions are stable and the immunosuppressants have not
been changed. Your doctor may ask for more frequent blood tests (weekly for 2 or
3 weeks) if your immunosuppression has been changed. After one year, you may
need to have blood tests alone once a month.
The laboratory tests that will need to be performed routinely include:
• Complete blood count
• Platelets
• Sodium, potassium
• BUN, creatinine
• Glucose
• Total bilirubin
• ALT (SGPT)
• AST (SGOT)
• GGTP
• Magnesium
THIS IS FOR THE REST OF YOUR LIFE!
These tests may be drawn and processed at your local laboratory or hospital and
results can be sent to coordinator.
After Your Liver Transplant
37
Your Prograf (Tacrolimus/FK506) or Neoral (Cyclosporine) blood sample can be
drawn at your local lab, if they are able to process the specimen and send the
results to your coordinator.
The liver laboratory tests listed above are very sensitive to early changes and can
signal rejection long before you feel ill.
After Your Liver Transplant
38
INFECTION
Your immunosuppressant medications, which are necessary to prevent rejection of
your transplanted organ, make it more difficult for your body to fight infections.
Symptoms such as a cough or fever, which may have gone away on their own
before your transplant, can now be a warning sign of an infection. If you have any
signs or symptoms of infection listed on the following page, you should call your
coordinator immediately. We will recommend that you be seen by a doctor to
determine if you have an infection, and if so, how you should be treated. Even if
your doctor diagnoses and treats your infection, it is important that you inform
your transplant coordinator.
Fever in a person taking immunosuppressants is an important warning sign that
there may be an infection or organ rejection. Even if your fever lasts only a few
minutes, you need to contact your coordinator. If your fever is gone, that does not
mean that the cause of the fever (usually an infection) is gone.
Check your temperature every morning for the first three months after your
transplant and any time you feel ill, feel hot, or have shaking chills. You may use
a glass mercury thermometer under your tongue (for 3 minutes) or electronic
digital thermometer. If your temperature is 101°F (38.5°C), call your coordinator
immediately. If your temperature is between 100° F (37.5°C) and 101°F (38.5° C)
for 24 hours, call your coordinator. If you feel ill don't wait 24 hours before
calling your coordinator, call your coordinator right away.
Your coordinator will advise you regarding your fever. You may be asked to go to
your local hospital emergency department. The doctor seeing you should contact
your coordinator to assure that all the necessary tests are ordered before you are
discharged. These may include blood culture, urine culture, throat culture, a chest
x-ray, and liver enzymes, as well as other tests. Your symptoms and physical
condition will help decide what tests are necessary.
Remember to call your coordinator when any new medications are started.
Do not take Tylenol (acetaminophen) or aspirin for a fever until you have called
your coordinator. If you take Tylenol (acetaminophen) or aspirin while your
temperature is mildly elevated (between 99°F and 100.9°F) it will lower the
temperature and we will never know if the temperature would have gone up. Just
because the fever is gone, the cause of the fever, usually infection, is not also gone.
After you have been examined by a doctor and have had the necessary tests to
investigate the cause of the fever, you may take medicine such as Tylenol to lower
your fever. Remember to drink extra fluids and rest if you have a fever.
After Your Liver Transplant
39
You may take Tylenol (acetaminophen) occasionally for muscle aches, headaches,
etc. It should not be used on a regular basis, however. Remember to call your
coordinator if you have an unrelieved headache or pain. Do not take
Advil/Aleve/ibuprofen/Motrin or any other non-steroidal medications.
SIGNS AND SYMPTOMS OF INFECTION TO REPORT
Night sweats
Blisters
Pus-like drainage
Chills
Rash
Clammy skin
Redness
Confusion
Shortness of breath
Cough
Skin changes
Decreased appetite
Sore throat
Diarrhea
Sputum production
Difficulty swallowing
Swelling
Earache
Swollen glands
Fatigue
Urinary burning, frequency, pain
Fever
An and/or bleeding
Headache
Vaginal drainage
High white blood cell count
Vision changes
Joint pain
Vomiting
Lethargy
Weakness
Muscle aches
Weight loss
Nausea
White plaque in mouth
Neck Stiffness
New unexplained pain or tenderness
Drainage, redness, pain, swelling, leaks, or odor at: wound site, incision site, or
catheter site.
Also report any:
•
•
•
•
Exposure to chicken pox or herpes zoster (shingles)
Dirty cuts or injuries
Animal bites/human bites
Exposure to contagious disease
After Your Liver Transplant
40
PREVENTING INFECTION
Your immunosuppressant medications, which are necessary to prevent rejection,
reduce your ability to fight infections. This does not require you to avoid contact
with people. By making some changes in your activity and life style, you can
significantly reduce your risks of acquiring infections. You must consider the risks,
remembering that it will be easier for you to acquire an infection and harder to fight
it off.
Various recommendations are given below. However, new risks for infection may
present themselves at any time. Remember to call your transplant coordinator for
advice when such situations arise, such as contamination in local water supplies.
Some actions you can take to decrease your risk of infection include:
• Maintain your general health with proper nutrition, rest, exercise, and stress
reduction.
• Avoid people with infections, especially those with active viral infections such as
chicken pox, mumps, measles, mononucleosis, tuberculosis, colds, or flu.
• Take your medications to prevent infection as prescribed.
• Call your transplant coordinator with any signs of infection.
• Take the recommended antibiotics before and after dental work or other invasive
procedures. Call your coordinator before these procedures are done.
• Follow the recommended food safety guidelines.
• Practice good hand washing, especially before eating, after touching objects that
carry micro-organisms (money, door knobs, public telephones), and after using
the bathroom.
• In public facilities, turn off the water with a paper towel after drying your hands.
Use care to touch the faucet or handles with your clean hands. If no paper towels
are available, use your elbows or backs of hands, if possible.
• Remember to scrub with soap for at least 10 seconds, rubbing between fingers.
• Avoid compost piles, construction sites, damp hay, decaying plants, fruits, and
vegetables.
• Wear gloves when you could be exposing small cuts in your hands to potentially
dangerous micro-organisms, such as gardening.
• Wear shoes when walking outside to prevent exposing cuts in feet to
microorganisms in soil.
• Cover your body, including arms and legs, when hiking.
• Avoid touching your eyes, nose, and mouth if your hands are not clean.
After Your Liver Transplant
41
• Do not receive any live vaccinations. Avoid anyone who has received an oral
polio vaccine for eight weeks. You may call your coordinator to check if a
vaccine is safe.
• Get tetanus shots, as needed (animal bites, dirty cuts).
• Get flu shot yearly in the fall. These are not live vaccines.
• Do not share razors, toothbrushes, or eating and drinking utensils.
• Practice safe sex.
• Avoid drinking well water. Use bottled water or boil water for 10 minutes if there
is a question of contamination.
COLDS
Should you experience cold symptoms such as cough, sore throat, or nasal discharge,
see your doctor. It may be difficult to tell if you have a cold or a more serious
infection requiring antibiotics. You may need a chest x-ray, throat cultures, or other
tests to determine treatment. Remember to inform your coordinator of any new
prescriptions.
Keep track of your temperature, and remember to call your coordinator if it goes to
101° F (38.5' C) or is 100° F (37.80 C) for 24 hours.
Check with your coordinator before taking any over-the-counter cold medications.
Many over-the-counter cold medications contain pseudoephedrine which can interact
with Prograf/Neoral/Gengraf.
CMV (CYTOMEGALOVIRUS)
CMV is a virus that causes a mild infection in people with a normal immune system.
When you are immunosuppressed, however, your immune system is not able to keep
this virus in check. For this reason, CMV is the most commonly seen infection in
transplant recipients. Most people have already had a CMV infection by the time
they are adults. If you have never had a CMV infection and have no antibodies to
CMV, you will be at a greater risk of getting a CMV infection. If you have had a
CMV infection, and have antibodies, you can still get a CMV infection. It is not
possible to prevent using organs or blood which carry CMV since most adults have
had CMV.
After Your Liver Transplant
42
A blood test called CMV antigenemia will be performed on a regular basis for the
first six months after your transplant to detect for presence of a CMV infection. This
test may reveal an infection that is just starting. Treatment can be started before you
become ill with the infection.
Treatment for a CMV infection is usually Valcyte (valganciclovir), a medication
given one to two times a day. The length of treatment will depend on the severity of
your infection and your response to the medication. Treatment usually lasts 14 days.
It may not be necessary for you to stay in the hospital during part of the treatment for
intravenous medication.
It is possible to get a CMV infection more than once. Symptoms can include fever,
fatigue, nausea, vomiting, decreased appetite, diarrhea, vision changes, or elevated
liver enzymes. Tell your coordinator if you have any of these symptoms.
INJECTIONS/VACCINATIONS
As an immunosuppressed transplant recipient, you must NEVER receive an injection
of a live virus. You could develop the disease that the vaccine is trying to prevent.
The oral polio (Salk) vaccine is a live virus. In the past, this was usually given to
children at two, four, and six months of age and once again between four and eight
years of age. This live virus may be spread for up to 8 weeks after being given. This
virus is spread in the child's bowel movement, saliva, tears, and in the air. We
recommend that you avoid all contact with any children who have received the live
oral polio vaccine for eight weeks. The oral vaccine is rarely used now. If there is a
child with whom you do not want to avoid contact, the child should receive the
inactivated (Sabin) polio injection, which is not a live virus; this is a shot, not liquid
drops in the mouth. You may have the pediatrician involved call your coordinator if
there is any question about polio immunization.
Another example of a live virus vaccine would be the MMR (measles, mumps and
rubella), that is given to children. You do not need to avoid persons vaccinated with
MMR. You would not need to ever receive such injections as an adult.
Annual flu shots are an inactivated vaccine, which our Infectious Disease Service
recommends. Flu can be very serious, particularly in immunosuppressed patients.
You may get the flu shot yearly in the fall. Do not get the flu shot if you are allergic
to eggs or chickens. You should wait at least four months after your transplant
before getting a flu shot.
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43
Varivax is an injection for chicken pox, which is a live vaccination. Transplant
patients should not receive this vaccination. Being in contact with someone who
received a varivax injection may present a risk.
If you get an animal bite or scratch, or a dirty cut or injury, such as stepping on a
nail, you should get a tetanus shot. Tetanus boosters are recommended every ten
years.
CHICKEN POX
Chicken pox, caused by the varicella virus, can be a very dangerous disease in an
immunosuppressed transplant patient. If you are ever exposed to chicken pox, call
your transplant coordinator immediately. Even if you had chicken pox in the past,
you may get them again if your immunity is low. Remember that someone may be
contagious with the chicken pox virus as early as five (5) days before they breakout.
It is important to know the status of your immunity to chicken pox. Have your
coordinator write it here:
If you have never had chicken pox and you have no immunity, our infectious disease
doctor may recommend medications to temporarily provide protection.
Once you have had chicken pox, the virus remains inactive in the nerve roots of your
body forever. It can flare up at a later time in the form of red blisters along the nerve
root. Usually this is on one side of the trunk of your body or head. It is called herpes
zoster or shingles. You need to contact your coordinator any time you notice red
blisters on your body such as these. We will recommend that you see a doctor as
soon as possible to determine if you do have herpes zoster. If you do, a medication
called acyclovir (Zovirax) or valacyclovir (Valtrex) will be ordered. If you are
already taking acyclovir prophylactically, you may need to receive it intravenously or
have the oral dose increased.
If you are exposed to someone with herpes zoster and you have no immunity to
varicella (the chicken pox virus), you will need to contact your coordinator, just as in
exposure to chicken pox. If you have no immunity to the varicella virus, our
Infectious Disease service will make recommendations for preventative medications.
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44
PETS
The Transplant Service does not ask that you give away your house pets with the
exception of birds. It is strongly recommended that you do not have a bird in your
home. We do recommend:
• that you wash hands well after touching pets
• that someone else care for sick pets
• that someone else should clean up after the pet (you should not clean up kitty
litter). You should not come in contact with animal urine, feces or emesis.
Bird droppings, especially pigeons, often carry a fungus that is dangerous to
immunosuppressed patients. This fungus is life-threatening.
Do not let your pets roam freely outside. Cats in particular may acquire infectious
agents while hunting rodents.
Contact your transplant coordinator if you have questions about pets.
FOOD SAFETY FOR PEOPLE WITH WEAKENED IMMUNE SYSTEMS
People with weakened immune systems face special risks from foodborne disease.
Not only are you more likely to develop foodborne disease, you are also more likely
to have serious complications as a result.
Who is vulnerable? Many people with weakened immune systems have a chronic
illness of some type such as cancer, kidney failure, chronic liver disease, diabetes, or
AIDS. Transplant patients, especially in the early months, are also at risk because
their immune systems are purposely suppressed to prevent rejection.
Your risks can be controlled. By following basic rules of food safety, you can
protect yourself whether you eat at home or out.
Protect yourself when you eat out: the single most important thing to remember when
you eat out is never eat raw or undercooked foods of animal origin, such as raw fish,
beef, or seafood. Eating raw oysters, for example, can cause serious problems. Raw
oysters can contain a number of harmful organisms including a particularly deadly
bacterium, Vibrio vulnificus. For people with liver disorders, mortality rates from
this disease can run as high as 50 percent. That also means no uncooked meat (like
steak tartar), rare roast beef, and undercooked hamburger.
After Your Liver Transplant
45
It is best to avoid salad bars at restaurants. It is nearly impossible to be sure that
those using the salad bar before you did not contaminate it by using the same plate
more than once or through other unsafe practices.
Foods should be well cooked and they should be served to you hot, not lukewarm.
Cooking foods thoroughly destroys potentially harmful organisms, and not allowing
foods to stand longer than two hours at room temperature helps keep them safe.
According to the Centers for Disease Control and Prevention, one of the most
important causes of foodborne illness at home is "cross-contamination." Crosscontamination occurs when juice or blood from uncooked meat, poultry, or fish
comes into contact with other foods via cutting boards, utensils, plates, counters, or
hands. Be sure to thoroughly wash your hands, cutting boards, plates, utensils,
counters, sinks, and any other surfaces in hot soapy water to prevent the spread of
germs from raw meat to cooked foods. You may want to clean your cutting board
with bleach or use one cutting board for raw meats and another for cooked meats.
Avoid foods with raw or undercooked eggs, which are found in Caesar salad
dressing, hollandaise sauce, and some desserts. These foods may be safely made
with egg substitute that is pasteurized. Recent data suggests that raw or undercooked
eggs may be a significant source of salmonella infection. Eggs need to be thoroughly
cooked to be safe. Do not eat dough or batter with raw eggs.
If you have more questions, call the USDA Meat and Poultry Hotline at
1(800)535-4555, 10 a.m. to 4 a.m., weekdays, EST. For information about seafood
safety, call the Seafood Hotline at 1(800)FDA-4010.
Adapted from: FOOD NEWS FOR CONSUMER, SPRING 1990.
PROTECT YOURSELF FROM FOODBORNE ILLNESS
1. NEVER eat raw or undercooked meat, poultry, seafood, or eggs. Raw food can
contain dangerous bacteria and other disease-causing organisms.
2. COOK RAW MEAT THOROUGHLY - poultry to 180° and beef/pork to 165°.
Cook eggs solid, both yolk and white. Wild game such as bear, boar, or venison,
should also be cooked. You may eat USDA grade meat purchased in a store
cooked more than medium rare.
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46
3. DRINK/EAT ONLY PASTEURIZED MILK AND CHEESE made from
pasteurized milk.
4. PREVENT SPREADING OF BACTERIA (cross-contamination). Wash hands,
utensils, cutting boards, and counters in hot soapy water after contact with raw
meat, fish, poultry, and eggs.
FOLLOW THESE GUIDELINES AT EACH STEP OF FOOD HANDLING
SHOPPING
FOOD
PREPARATION/SANITATION
Don't buy foods in damaged containers,
such as cracks, dents, or bulging lids.
Wash all surfaces that come in contact
with raw meat, fish, poultry.
Avoid roadside stands and farmers
markets unless regulated by your County
Health Department.
Use cutting boards that don't get
grooves in them. Use separate cutting
boards for meats (such as beef, poultry,
and fish).
Avoid luncheon meat and cheese from the
deli; buy prepackaged meats and cheeses
instead.
Use the dishwasher as much as possible,
if you have one.
Wash kitchen towels, cloths, and
sponges often.
Check meat, fish, poultry, for freshness.
Check sell-by dates. Don't buy undercooked seafood.
Scrub fruits and vegetables and peel
whenever possible.
If your water is from a well, you may
use bottled water or boil the water for
10 minutes.
After Your Liver Transplant
47
COLD STORAGE
Refrigerate perishables as soon as you get home from the store. Freeze meat,
poultry, and fish immediately if you are not going to use within a few days.
Use with an appliance thermometer to make sure refrigerator temperature is 40° or
lower and freezer is 0° or lower.
Store canned goods in a cool, dry place for not more than one year.
Place meats on a plate on the bottom shelf of refrigerator so that juices don't drip on
other foods.
THAWING
Bacteria grow quickly at room temperature. Thaw food only in the refrigerator the
night before or in the microwave just before cooking.
EATING OUT
• Avoid salad bars. Eat at restaurants with good safety records and ratings.
• Avoid roadside stands and markets.
• Scrutinize buffets (make sure food is hot).
COOKING
Cook meat and poultry well (see above) at oven temperatures of 325° or higher.
Cook poultry to an internal temperature of 180°, beef and pork to 165°.
Red meat should be brown or gray inside. Poultry juices should run clear. Fish
should flake with a fork.
When adding herbs/spices to food - cook for at least 5 minutes.
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48
LEFTOVERS
• Cool hot foods as quickly as possible by dividing into small shallow containers.
Foods can be placed into refrigerator warm.
• Heat leftovers to 165°.
• Keep leftovers no more than 3 days.
After Your Liver Transplant
49
WHO TO CALL
The transplant office is open from 8:30 a.m. to 4:30 p.m. EST, Monday through
Friday. It is closed weekends and holidays. The telephone number is
(914)493-8916. A transplant coordinator is on-call to assist with problems that arise
when the office is closed. It is best to contact your coordinator during office hours
for routine questions and problems when possible.
When calling the Liver Transplant office, we recommend that you leave your name
and number if your coordinator is unavailable. Inform the receptionist if your call is
urgent.
If you call when the office is closed, you will be directed to the answering service.
The answering service will take your name and number for the on-call coordinator to
call you back. If your call is not returned within one hour, please call again. If the
answering service mistakenly wrote the incorrect phone number, we will not be able
to return your call. An example of why you should call would be fever, if you forgot
to take your medications, if you are admitted to a hospital. Tell the answering
service if your call is urgent.
When calling the transplant office or answering service, please realize that there are a
large number of calls every day; you may need to let the phone ring a number of
times. However, there have been rare circumstances causing a temporary telephone
outage. If your call is not answered, you may call the Westchester Medical Center
operator at (914)493-7000 and ask to have your coordinator paged if it is during
office hours. After hours, ask for the liver transplant coordinator on-call.
If you want to meet with your coordinator, do call ahead to schedule an appointment.
Your transplant coordinator should be notified of any change in your medical
condition. However, if you are having a medical emergency, you need to contact
your local emergency medical system first, not your coordinator first. An example of
an emergency would be shortness of breath, chest pain, or severe bleeding. This
emergency number is usually "911" but not always. Post your local EMS number by
your telephone. Emergency treatments can and should be started before notifying
your coordinator. Call your coordinator any time you are hospitalized.
After Your Liver Transplant
50
We recommend that you be seen by your doctor first if you have any new symptoms
such as swelling in the feet, high blood pressure, cough, pain, etc. Staff at the
Transplant Office are available for consultation and should be contacted with
changes in your condition. This includes examinations for new symptoms or
complaints, examinations for possible infections, changes in medications, new
diagnoses, any surgeries, or any hospitalizations.
SOCIAL WORK SERVICES
After your transplant, a social worker will be available to you to assist you and your
family with emotional and financial issues and issues related to discharge planning,
such as lodging, transportation, and obtaining your medications. You may reach
your social worker through the social work office at (914)493-7641.
BILLING PROBLEMS
Should you have problems or questions related to hospital billing, you can call
Patient Accounts at (914)493-2840, Monday through Friday, 8 a.m. to 4:30 p.m.
If you have problems or questions related to surgeon bills, you can call (914)5943239.
If you have a change in your heath insurance, it should be telephoned to the
transplant office at (914)493-8916. It is important to do this, even if you are not
currently coming to clinic. If you are contemplating an insurance change, please call
our financial coordinator prior to making any changes.
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51
PSYCHOLOGICAL CHANGES
After your transplant, you and your family may notice several psychological
changes. Most immediately following your surgery, you may experience delirium.
This is a disorder that is caused by the high doses of medications you were given
during surgery and immediately after. The symptoms will become less intense and
disappear over time. Symptoms of delirium include:
•
•
•
•
•
•
•
Slowed thoughts
Confused thoughts
Fluctuating emotions often described as "being on an emotional roller coaster"
Concerns that someone is following you or attempting to hurt you
Being unsure of where you are, of the date, or commonly known information
Poor short-term memory
Hallucinations (seeing or hearing things that no one else does)
If these symptoms occur after you are discharged, notify your transplant coordinator
or physician at once. If these symptoms become intense and cause you extreme
discomfort, agitation, or interfere with your treatment, a psychiatric consult may be
requested. Medication is available to control these disturbing symptoms.
Many patients and their families experience depression or anxiety following the
stressful event of transplantation. Symptoms include:
•
•
•
•
•
•
•
•
•
•
Depressed or nervous mood for more than two weeks
Loss of interest or pleasure in activities that you normally found enjoyable
Significant weight loss or gain without dieting
Problems with falling or staying asleep or sleeping all the time
Restlessness or being slowed down
Feelings of worthlessness or excessive guilt
Hopelessness that things will never get better
Difficulty thinking, concentrating, or making decisions
Frequent thoughts of death or ideas of suicide
Irritability
Being away from home and loved ones for long periods of time, financial worries,
frustration with trying to understand the hospital system, physical setbacks, and
physical discomfort are some of the reasons you may become depressed or feel
After Your Liver Transplant
52
anxious. Sometimes the medications necessary following the transplant can magnify
symptoms of these disorders you may have had before the surgery.
There are several ways you may find some relief from your concerns. Often, talking
to others who have gone through similar experiences allows you to feel less lonely.
Social workers, psychiatrists, nurses, and chaplains are available to assist you either
in the hospital, clinic or at home. If you would like to make use of these services, tell
your nurse, physician, or transplant coordinator.
TRIO (Transplant Recipient International Organization) is a non-profit organization
for transplant recipients and those interested in supporting transplantation. In
addition to offering support, TRIO provides public education regarding
transplantation and organ donor awareness. You can call TRIO international
at 1(800)TRIO-386 to check if there is a TRIO chapter in your area. There is
also the Transplant Support Organization (TSO) located in the Bronx, Putnam,
Dutchess and Westchester area. The number for the Westchester chapter is
(914)576-6617.
Monthly support groups for Hepatitis C are also held here at Westchester Medical
Center. Please check with your coordinator for the schedule.
After Your Liver Transplant
53
MECHANICAL PROBLEMS
During your liver transplant surgery, blood vessels of the donated liver are attached
to blood vessels in your body. The bile duct is either attached to your bile duct or
your intestine.
Many factors, such as size difference of the vessel or ducts between you and the
donor, may cause problems in healing such as leaking, narrowing, partially or totally
blocked blood vessels or ducts. You may have elevated enzymes, fever, or jaundice.
Special tests can be performed to diagnose such a mechanical problem. Treatment
may include dilatation, medications, surgery, or retransplantation.
It is important that only a transplant surgeon diagnose and treat the symptoms listed
above. It cannot be assumed that all instances of elevated liver enzymes or jaundice
are due to rejection. Mechanical problems can be deadly if not treated.
After Your Liver Transplant
54
PTLD
POST-TRANSPLANT LYMPHOPROLIFERATIVE
DISORDER
PTLD is a cancer-like condition that occurs in about 2% of transplant recipients. It is
usually due to a certain viral (Epstein-Barr virus) infection. This is the same virus
that causes mononucleosis. The most common symptom is swelling in a lymph
gland. Lymph glands are most commonly found in the neck, but can also be in the
tonsil area, armpit, groin, and elsewhere. You may have fever. Any masses or
swelling should be reported to your coordinator immediately. While a swollen gland
is a normal response to an infection, this can be a fatal process in an
immunosuppressed transplant patient. You may need to be hospitalized urgently so
that a biopsy may be performed.
If your biopsy shows that you have PTLD, your immunosuppressant medications will
be adjusted by a transplant surgeon. You may also receive intravenous medications.
Special tests may also be performed to determine if any masses are occurring
internally.
After Your Liver Transplant
55
DISEASE RECURRENCE
As the number of surviving liver transplant patients increases over the years,
recurrence of their original liver diseases has been observed. Removal of your own
liver does not always remove the cause of your liver disease. Liver transplantation is
a treatment, not a cure.
Recurrence has been seen in patients transplanted for Hepatitis B, Hepatitis C, cancer
of the liver, as well as some other autoimmune liver diseases. Special tests may be
ordered on a regular basis to monitor recurrence and start treatment if indicated.
Patients who were transplanted due to alcohol cirrhosis, as with all liver transplant
recipients, should avoid all alcohol intake. It may have taken decades of alcoholism
to destroy your original liver, however, your transplanted liver is more susceptible to
toxins, such as alcohol, and may be damaged or destroyed rapidly. Retransplantation
would not be considered for recurrence of alcoholism. We do believe that
alcoholism is a treatable disease. Alcohol rehabilitation and Alcoholics Anonymous
are highly recommended. You may also contact your transplant coordinator or
substance abuse counselor.
Recurrence of other liver diseases such as primary biliary cirrhosis, sclerosing
cholangitis, and autoimmune hepatitis were unheard of previously, but as such
patients are surviving many years after transplantation, evidence of such recurrence,
although very rare, is rising. Special tests may be ordered if you have liver failure
and rejection and other diagnoses are not evident.
After Your Liver Transplant
56
FOLLOW UP CARE
YOUR DOCTOR AT HOME
During and after the transplant, your transplant coordinator will have updated your
primary care doctor at home. When you are discharged from clinic, your coordinator
will send a packet of information to your doctor outlining your course at Westchester
Medical Center. It will include medical records, current medications, and laboratory
recommendations. We recommend that you contact your doctor as soon as
convenient after returning home so that your doctor can be familiar with your present
condition and reevaluate you if you have any changes. It is important that you
maintain follow-up with your primary care doctor for routine medical care such as
colds, flu, sprains, vaccinations, etc.
The transplant surgeons will manage your immunosuppressant medications life-long
by monitoring your laboratory results and clinical condition along with your local
doctor and your transplant coordinator. Both you and your local doctor will be
notified when the transplant surgeons recommend a change in immunosuppression.
You or your doctor should feel free to contact us if you are having side effects from
your immunosuppressants.
Your local doctor may manage your other medications, but we ask that your
transplant coordinator should be notified by either you or your doctor when:
* A medication is prescribed, either prescription or over-the-counter.
* Any medication is discontinued.
Your local doctor can best determine how often you need to be examined. After your
initial recovery from your transplant, this should be at least yearly, but may be more
often as indicated by other medical problems.
OPHTHALMOLOGIST
It is recommended that you see an ophthalmologist (a medical doctor who specializes
in diseases of the eye) when you are discharged to home, and yearly after that. Longterm use of Prednisone can lead to cataracts and glaucoma. Should you have
beginning signs of either of these while you are on Prednisone, contact your
coordinator to inquire about reducing your Prednisone.
Vision changes should also be investigated by an ophthalmologist. Infectious
processes can occur in the eye requiring prompt treatment.
After Your Liver Transplant
57
If you are maintained on interferon, it is mandatory that you have an eye exam
yearly.
GYNECOLOGIST
Female patients should see their gynecologist yearly for an examination including a
Pap smear. A baseline mammogram should be done as recommended by your
primary care physician, as well as monthly self-breast exams.
DENTAL WORK
Before having dental work done it is recommended that you have antibiotics to
prevent infection. Your mouth contains many micro-organisms which can invade
your blood stream when tiny cuts are made during a teeth cleaning or dental surgery.
The recommended antibiotic is Amoxicillin 2 grams, 1 hour before the procedure.
If you are allergic to Penicillin, Clindamycin (600 mg ) is recommended 1 hour
before the procedure.
You may have your dentist or local doctor order the medication for you.
If you are unable to take medication by mouth and need to receive it intravenously,
Ampicillin 2 grams IV or IM is recommended 30 minutes prior and 1 gram IV or IM
6 hours after the procedure.
If you are allergic to Penicillin and unable to take by mouth, Vancomycin 1 gram IV,
is recommended 1 hour prior to the procedure.
After Your Liver Transplant
58
STAYING HEALTHY
RESUMING ACTIVITY
The amount of sleep necessary varies widely among individuals. Most people need 4
to 10 hours of uninterrupted sleep in a 24-hour period. You may find it difficult to
sleep in the hospital, especially if you have been in an intensive care unit more than a
few days. You may have an urge to sleep during the day and stay awake at night. It
is best to avoid sleeping long periods during the day while you are recovering so that
you may sleep better at night. Report any sleep problems to your doctor.
You may experience weakness after your transplant surgery from prolonged bed rest
and muscle loss. Exercise and adequate nutrition, rather than too much bed rest, will
help you return to your usual activities. Physical therapy will help you to regain
strength and increase your activity level. You may be given an exercise schedule to
follow after discharge from the hospital.
Remember that the liver transplant treats your liver disease only. If you experienced
fatigue from other medical conditions prior to your transplant, it will not necessarily
be affected by your transplant.
EXERCISE
Resuming or starting an exercise program is important after transplantation. You
may choose something as simple to do as walking 20 minutes three times a week. A
regular exercise program offers many benefits such as preventing weight gain,
improving cardiovascular function, increasing stamina, and reducing stress.
Check with your coordinator or surgeon before starting any intense exercise program
during the first six months after transplant. Begin slowly when initiating exercise
after your surgery. Do not do push ups or sit ups during the first six months after
surgery.
After Your Liver Transplant
59
HIGH-RISK ACTIVITY
Activities with a high risk of injury, such as skiing or motorcycling, should be
avoided during the first year after transplantation. During this time, your
immunosuppressant doses will be at a high level. If you receive an injury and require
surgery, you will be at a greater medication risk for infection.
SWIMMING
Swimming is permitted after transplantation after all your wounds are healed, the
drainage tubes and catheters are removed, and incisions healed. Chlorinated pools
are recommended. Avoid waters posted for "no swimming," which may contain
infectious microorganisms, toxic chemicals, or dangerous vegetation (red tide found
in the Caribbean and West Coast), or have sewer overflow. You can check with
local health departments who often test waters for safety and post signs if unsafe. If
in doubt, do not enter the water. Avoid public hot tubs. Avoid swallowing any pool
water.
SUN EXPOSURE
Sun exposure may increase your risk of developing skin cancer. Use a sunscreen
with at least 15 SPF (sun protection factor), wear a hat, and limit exposure, especially
from 10 a.m. to 2 p.m.
RETURNING TO WORK
Most liver transplant recipients are able to return to work. The time to return to work
is quite variable, however. We do not recommend returning to work for at least 12
weeks after surgery. Check with your coordinator or transplant surgeon if you need a
return-to work release.
DRIVING
After your liver transplant surgery, it is recommended that you do not drive for at
least six weeks. This may be too soon for some people. Check with your
coordinator or surgeon before driving after your transplant surgery and any other
major surgeries.
Your reflexes, judgment, and vision may be affected by the medications you are
taking. Do not drive if you feel any of these are impaired.
Have a licensed driver with you the first time you get behind a wheel.
Always wear your seat belt. It will not hurt your liver.
After Your Liver Transplant
60
If you have a wound that is still open, you may cushion it with a small pillow or
towel so that the seat belt does not rub against it.
If you had any seizures after transplantation, check with your doctor and the state
police before driving again. The laws vary from state to state.
SMOKING
If you smoked prior to your transplant, it is highly recommended that you quit. In
addition to causing damage to your heart and circulatory systems, smoking can make
it more difficult to fight off respiratory infections.
SEXUAL ACTIVITY
Your sexual performance may have been affected before your transplant, if you were
in liver failure. As your new liver regains function, you may wish to resume sexual
activity. You may do so whenever you feel well enough. Your sexual performance
may be affected by your medications. Discuss this and any other concerns with your
doctor or coordinator.
SAFER SEX
As an immunosuppressed transplant recipient, you should protect yourself against the
risk of infection or disease. When used properly, latex condoms can greatly decrease
the transmission of micro-organisms spread during sexual contact. This is
particularly important if you are intimate with a new partner or more than one
partner.
If you are in a monogamous (only one partner) sexual relationship, the chances of
transmitting acquired viruses are small. If you had viral hepatitis (hepatitis B or
hepatitis C) the virus was not removed from the blood by transplantation. It is
possible for you to infect your new partner with the hepatitis virus.
BIRTH CONTROL
Liver transplant recipients who were infertile prior to the transplant may become
fertile after transplantation. Female patients may even ovulate (have a fertile egg)
before menstruation resumes.
If you are sexually active and are not attempting to become pregnant, we recommend
one of the following methods of birth control:
Recommended:
• Condoms to be used with spermicidal agents
• Diaphragm to be used with spermicidal agents
After Your Liver Transplant
61
Check with coordinator about:
• Norplant contraceptive
• Birth control pills
Not recommended:
• IUD (Intrauterine device)
PREGNANCY
The transplant service does not recommend trying to become pregnant during the
first one to two years after transplantation. This is the time when most complications
occur and the medication doses are highest.
Contact your coordinator if you become pregnant. Your obstetrician may also call us
as needed. It is important that you seek prenatal care before becoming pregnant and
as soon as you become pregnant.
A number of female liver transplant recipients have delivered healthy babies. There
is a greater chance of premature births, low birth weights, and Cesarean sections for
the liver transplant recipients. The effects of immunosuppression on the fetus are not
yet known. It is recommended that you do not breast feed to avoid passing the
medications on to the baby through breast milk.
If you are thinking of becoming pregnant, the transplant service suggests that you
discuss this with your doctor, obstetrician/gynecologist, transplant surgeon, and/or
transplant coordinator before you become pregnant.
ALCOHOL AND OTHER TOXINS
Your transplanted liver may be more sensitive to damage by chemicals. That is why
we recommend that you avoid alcoholic beverages completely after transplantation.
This includes non-alcoholic beer, which does contain alcohol. You should also avoid
foods containing alcohol. Even if the food is cooked, it is not possible to know if the
alcohol is cooked out.
If you have used alcohol or abused other chemicals, such as illegal drugs since your
transplant, you may want to contact your coordinator or substance abuse counselor
for help; we believe that alcoholism, like many other diseases, is a treatable one.
After Your Liver Transplant
62
TOXIC CHEMICALS
Many commonly used household chemicals are metabolized by the liver. It is
recommended that you avoid skin contact or inhaling any possibly damaging agents
by using a mask, goggles, and good ventilation, if you must use any chemicals.
These include paint, paint removers, pesticides, gasoline, drain cleaners, or
insecticides.
DRINKING WATER
You may drink treated (chlorinated) municipal tap water after transplantation. If
your water is from a well or questionable, it is safest to boil your water. It should be
at a rolling boil for 1 minute. You may contact your local water authority (the phone
number should be on your water bill) or the EPA Safe Water Hotline at
(800) 426-4791 with questions.
MEDIC ALERT
The transplant service recommends wearing a medic alert or similar identification.
This allows others to be aware of your medical status should you be unable to
communicate. A form is provided in the pocket of this book. It is recommended that
you indicate:
Liver Transplant, on Immunosuppressants
for the area to be engraved, as well as any other important medical diagnoses. We
advise you to always keep a list of current medications in your wallet for easy
reference. This can be especially helpful should you need emergency treatment.
TRAVEL
If you are planning extensive travel (longer than your blood work intervals) we
recommend that you leave a number at which your coordinator can reach you. If this
is not possible, you may designate a third party with whom your coordinator can
leave a message if necessary, such as a relative or friend at home.
Take adequate medication with you. Carry your medication with you rather than
storing it in your luggage. If you are traveling to a time zone with three hours or less
difference from your current time, change your medication times all at once. For
example, medications you take at 8 a.m. Eastern Standard Time, would also be taken
at 8 a.m. Pacific Standard Time. For greater distances, you may contact your
coordinator for advice in timing medication.
After Your Liver Transplant
63
When traveling to foreign countries, we advise you to check with the Centers for
Disease Control International Hot Line at (404) 332-4559 or with your County
Health Department for current recommendations.
When traveling outside of the United States, or other industrialized countries,
contaminated food and water can be a cause of infection and lead to intestinal illness.
It is safest to drink canned or bottled beverages, avoid ice, and avoid beverages with
coffee or tea, in areas with questionable sanitation. If in doubt, do not use the tap
water to brush your teeth.
Uncooked fruits, vegetables and salads should be washed thoroughly. Unpasteurized
milk and milk products, and raw meat and shellfish should be avoided. All dairy
products should be pasteurized. Fruit that you peel is generally safe, as is cooked
food that is still hot. Areas of high risk include the developing countries of Africa,
the Middle East, and Latin America. The lowest risk exists in private homes; the
greatest risk is in food from street vendors.
If you develop traveler's diarrhea, you should consult a physician. Avoid dairy
products and beverages with questionable water. If you develop traveler's diarrhea,
bottled fruit juices and decaffeinated soft drinks with salted crackers are advised.
Ciprofloxin may be prescribed to prevent as well as treat traveler's diarrhea.
After Your Liver Transplant
64
NUTRITION
GOOD NUTRITION AFTER LIVER TRANSPLANTATION
Nutrition is a very important part of your recovery after liver transplantation. It can
affect the healing process in many ways. The proper nutrients in adequate amounts
can help prevent and fight infections. Good nutrition can help heal your surgical
wounds, replenish lost body tissue, and give you strength and energy. Being well
nourished can also help your medications work more effectively and coupled with
following the correct diet, can decrease their side effects. A balanced diet containing
a variety of foods from the basic five food groups will provide the required amounts
of protein, vitamins, and minerals needed to get well and stay healthy. The dietitian
will provide you with the "Food Guide Pyramid" which explains how to include a
variety of foods from the five food groups. If you feel that you are unable to eat a
well balanced diet at this time, you may take a general multivitamin pill. This
supplement should supply 100% of the RDA level. Check with your doctor to be
sure that the multivitamin you are taking is adequate for your needs. Avoid taking
large doses of multivitamins or single vitamin doses, unless prescribed by your
physician. Always let your doctor/coordinator know all the medications you are
taking.
FOOD SAFETY
Because your immune system is suppressed to prevent rejection of your new liver,
you are at an increased risk of certain infections. This includes food born illnesses or
food poisoning. By following some basic guidelines you can protect yourself.
Follow the food safety guidelines provided in this chapter and in the section
beginning on page 50.
WEIGHT
TO GAIN WEIGHT
Initially, weight loss can be a problem for many liver transplant patients. It may be
difficult to gain weight at first. It is important for you to get back to your usual
weight or at least reach a good weight for your size in order to stay healthy. A high
protein, high calorie diet is needed to build up lost muscle and fat tissue and restore
body protein reserves. Protein stores may be depleted because of the high protein
demands during infection and after surgery. Steroids may also increase the need for
protein. See "Ways to Increase Calories and Protein".
If you are having specific eating problems such as poor appetite, nausea, taste
changes, or early fullness, see '"Tips for Nutrition Intake Problems". Remember
After Your Liver Transplant
65
what your desired weight is. Once you reach a good weight for your height, you may
then cut down on extra calories, especially high fat, high sugar foods in order to
maintain your weight.
TIPS FOR NUTRITION INTAKE PROBLEMS
Loss of Appetite
• Eat a variety of foods.
• Eat frequent, small meals.
• Have snacks available for between meals.
• If you are hungrier in the early part of the day, plan your biggest meal then.
• Eat in a relaxing, pleasant atmosphere. Arrange food attractively.
• Do light exercise, such as walking, before a meal to stimulate your appetite.
Feeling of Fullness.
• Eat frequent, small meals.
• Sip cool, clear beverages between rather than with meals.
• Avoid foods that cause gas and bloating such as cabbage, broccoli, beans, onions
and carbonated beverages.
• Eat slowly.
• Eat foods high in carbohydrate and protein rather than foods high in fat. Foods
high in fat, such as fried foods, stay in your stomach longer.
Nausea and Vomiting
• Eat foods high in carbohydrate such as pretzels, toast, cereal, pasta and fruit.
• Eat frequent, small meals.
• Drink clear beverages like apple juice or flat Ginger Ale. Have beverages
between meals rather than with meals.
• Try cold foods or food at room temperature. Limit fatty and spicy foods.
• Avoid eating in a room that is stuffy or too warn. Try fresh air and wear loosefitting clothing.
• If the smell of food nauseates you, avoid foods with strong odors. Eat in wellventilated areas or ask other people to prepare food for you. Also, consider quick
meals such as TV dinners.
• Rest after eating. Elevate your head and shoulders.
• Ask your doctor about medication for nausea.
After Your Liver Transplant
66
Change in Taste
• Marinate meats, chicken or fish in fruit juices, sweet and sour sauce, or Italian
dressing.
• Try using tart foods such as orange juice, vinegar and lemon juice as seasoning to
enhance flavor.
• Use more seasonings such as basil, oregano, rosemary, tarragon or mint. Adjust
food temperatures. Cold foods may be more appealing than hot foods.
• Drink liquids or suck on candies to eliminate bad taste.
WAYS TO INCREASE CALORIES AND PROTEIN
Getting enough calories and protein to maintain or increase weight may be difficult
after surgery or when you are not feeling well. It is important to make sure your
foods are nutrient dense so that the foods you do eat give you a lot of nutrition. The
following are some suggestions for increasing your protein and calorie intake:
Foods High in Protein Include
Meats:
Beef
Pork
Lamb
Veal
Fish:
All
Dairy:
Cheese
Milk
Yogurt
Poultry:
Chicken
Turkey
Eggs
Duck
Legumes:
Peanut Butter
Nuts
Seeds
Dried Beans, Peas &
Lentils
To Increase Protein
• Make double strength milk. Add one cup of dry milk powder to one quart of
whole, liquid milk.
• Add powdered milk to other foods such as mashed potatoes, pudding, meatloaf,
soups, casseroles, scrambled eggs, hot cereal etc.
• Add instant breakfast to milk for a snack. You may also use instant breakfast to
make a milkshake.
After Your Liver Transplant
67
• Add grated cheese to salads, casseroles, cooked vegetables, omelets, sauces soups
and noodles.
• Add diced or sliced hard-boiled eggs to salads.
• Spread peanut butter on bread, crackers, fruit slices and celery sticks.
• Sprinkle nuts, seeds and wheat germ on cereals, ice cream, yogurt, salads and
fruit; also add to muffins, pancakes and cookies.
• Add milkshakes or instant breakfast mixes to your daily meal pattern. Discuss the
use of commercial nutritional beverages with your dietitian.
To Increase Calories
• Follow the guidelines for increasing protein in your diet. Many high protein
foods are also high in calories.
• Add extra butter or margarine to soup, vegetables, potatoes, rice, pasta and
cooked cereals.
• Use dips, cream cheese and sour cream when possible.
• When choosing canned fruit, select varieties packed in heavy syrup.
• Mix light cream with milk to use in cereals, soups, sauces and pudding.
• Use extra mayonnaise in meat salads and on sandwiches.
• Have high calorie snacks ready to eat such as dried fruit, nuts, granola, cheese and
peanut butter.
• Eat high calorie desserts such as ice cream, puddings, custard, cakes, pies,
cookies, etc.
• Minimize intake of plain water. Use drinks that supply calories, such as soda,
fruit drinks, and juices. Do not use diet drinks.
After Your Liver Transplant
68
TO LOSE WEIGHT
It is possible for transplant patients, after a period of time, to gain an excess amount
of weight. Many factors contribute to this including certain medications that may
cause an increased appetite. Being overweight can lead to health problems such as
high blood pressure, heart disease, and diabetes. A low fat, low cholesterol diet is
encouraged to help prevent heart disease. Since fat is the highest calorie food
consumed, decreasing fat intake will also control calories.
TIPS FOR CUTTING FAT AND CALORIES
• Cut down on butter, margarine, dressing, mayonnaise, gravy, dips, sour cream and
cream sauces.
• Use low fat or skim milk, cheese, and yogurt.
• Substitute "lite" margarine, mayonnaise, and dressings for regular, but remember
they still contain some fat, so use sparingly.
• Select lean meat, chicken, and fish and broil, bake, and grill instead of frying in
fat.
• Avoid chips, buttery crackers, and rich desserts such as cakes, cookies, pies,
muffins and ice cream.
• Trim fat from meats, remove skin from poultry.
• Substitute low fat yogurt for sour cream.
• Substitute low-fat frozen yogurt or sherbet for ice cream.
• Substitute plain popcorn, pretzels, soda crackers for chips and nuts; baked potato
for French fries.
• Substitute angel food cake, vanilla wafers, Fig Newtons for higher fat desserts.
• Fill up on plain salads, vegetables, and low calorie beverages.
If you need further assistance, you may seek the services of a Registered Dietitian in
a hospital, clinic, or in private practice.
If you decide to enroll in a weight loss program, be sure it is one that promotes eating
a well balanced diet, changing eating behavior, and exercise, such as the program
Weight Watchers offers. Avoid programs that promote:
• rapid weight loss
• very low calorie or "starvation" diets, specific foods or nutrients as having
magical qualities, the use of liquid diet supplements to replace meals (unless
approved by your liver transplant physicians), "diet" pills. These types of diet
programs may be very harmful for a liver transplant patient.
After Your Liver Transplant
69
SPECIAL CONSIDERATIONS
You may need to restrict some foods due to side effects from your medications. Not
everyone will have to avoid the same foods because not everyone is on the same
medications. Also, everybody reacts to his or her medications differently.
Salt
Some medications prescribed after liver transplant may cause fluid retention. Fluid
build up can be detected by sudden weight gain and the swelling of your hands and
ankles. Certain medications may also cause your blood pressure to rise. If you are
experiencing fluid retention or have high blood pressure, it may help to follow a low
salt diet. See "When you need to cut down on salt" section.
Sugar
Steroids can cause high blood sugar (blood glucose) levels by affecting the activity
of insulin. The proper diet can help control high blood sugar (hyperglycemia). If
you have high blood sugars, follow the "Basic Diet for High Blood Sugar".
Sometimes hyperglycemia persists and becomes a permanent problem and you need
to take insulin. If this happens, you will need a more structured "diabetic" diet plan.
Potassium
Some anti-rejection drugs may cause high blood potassium (K+) levels. If potassium
in the blood gets too high, it can affect the way your heart beats. Your coordinator or
doctor will tell you if your level is higher than normal. If your level is high, please
refer to the Potassium sheet included. It is important to never use salt substitute
made with potassium chloride or foods made with it. Always read the label to be
sure that potassium chloride is not one of the ingredients. Herb and spice mixes are
allowed.
Calcium
This is not a restriction. Instead, you must increase your calcium intake if you are on
steroids. Chronic liver disease and steroid use can cause calcium loss from bones.
Three or more servings from the dairy group each day can give your body the
calcium it needs. If you cannot reach this amount, please ask your doctor to
prescribe a calcium supplement. High calcium foods include milk, yogurt, cheese,
and dark green leafy vegetables.
After Your Liver Transplant
70
WHEN YOU NEED TO CUT DOWN ON SALT
(3,000 to 4,000 milligrams per day)
Salt is made up of sodium and chloride (1/4 tsp = 500 mg sodium). You may need to
limit your sodium intake if you have high blood pressure or fluid retention. No
special foods are needed, but many low sodium products are available and may be
used if desired. If is important to read labels carefully.
Salty Spices (limit to 1/2 tsp per day in cooking or at the table)
Table Salt
Onion Salt
Steak Sauce
Celery Salt
Cooking Wine
Picante
Salt Pork
Meat Tenderizer
Salsa
Garlic Salt
Soy Sauce/Teriyaki
Lemon Juice
Low-sodium broths
Salad Dressing
Mustard
Try These Instead
Herbs and Spices Vinegar
Butter Flavoring
Limit to 1-2 Tbsp
Ketchup
BBQ Sauce
*******************************************************************
Items too High in Salt
Cold Cuts
Bacon
Canned Meats
Ham
Corned Beef
Frozen Dinners
Hot Dogs
Sausage
Chipped Beef
Smoked Meats
Processed Cheese Canned Tuna/Salmon
Eat fresh meats and rinse canned meat or tuna to reduce salt
********************************************************************
After Your Liver Transplant
71
Avoid These
Potato Chips
Pretzels
Salted Crackers Salted Bagels
Olives
Pickle Relish
Tomato Juice
Vegetable Juice
Noodle Rice Mixes
Corn Chips
Salted Nuts
Pickles
Tomato Sauce
Salted Popcorn
Sauerkraut
Pork & Beans
Potato Mixes
Canned Vegetables
(may have if rinsed)
Try unsalted snack foods instead or low sodium snacks: rice cakes, fruit,
vegetables.
********************************************************************
Avoid these:
Canned Soup
Buttermilk
(limit 2 cups)
Bouillon Cubes
Cottage Cheese
(limit 1/2 cup)
Gravy Mixes
Stuffing Mixes
Dried Soup Mixes Biscuit/ Pancake
(eat homemade)
Mixes
Be a Smart Shopper
Look for foods with less than 250 mg to 300 mg of sodium per serving.
BASIC DIET FOR HIGH BLOOD SUGAR
Occasionally certain medications (such as steroids) or medical conditions may cause
your blood sugar levels to become elevated. This is called hyperglycemia. The
proper diet can help control hyperglycemia. The following are basic dietary
guidelines to follow if your blood sugars are high due to steroids. Sometimes
hyperglycemia persists and becomes a permanent problem and you need to take
medication such as insulin. If this happens you will need a more structured
"diabetic" diet. In this case, call a dietitian so that he/she can plan a diet with you.
• Eat a variety of foods to provide the nutrients that your body needs. Use the Food
Guide Pyramid to choose from each of the five food groups: protein, dairy, fruit,
vegetable and starch.
• Eat three balanced meals per day, and snacks in between if needed or desired.
• Do not skip meals.
• Eat meals at about the same times each day and spread them apart; at least four to
five hours between meals.
• If you are overweight, lose weight. Your dietitian can help you learn more about
healthful ways to lose weight.
After Your Liver Transplant
72
• If you do not need extra calories, or do not need to gain weight, then follow a low
fat diet. This is healthier and can decrease your risk of heart disease.
• Choose foods high in fiber, such as bran cereals, whole grain breads, fresh fruits,
and vegetables.
• Do not use a lot of sugar or foods made with large amounts of sugar such as:
sugar
sweet rolls
glazed meats
soda
jelly
cakes
candy
drink mixes
honey
pies
pudding
lemonade
jam
cookies
gelatin desserts
milkshakes
syrup
doughnuts
sherbet
chocolate milk
molasses
Danishes
ice cream
sweetened yogurt
sugared
cereals
canned fruit in syrup
• Limit fruit juice to 1/2 cup serving and fruit to 1/2 cup or 1 medium piece per
meal or snack.
• You may use artificial sweeteners such as saccharin or aspartame or foods made
with these. Look for foods labeled sugar free or no added sugar. Foods labeled
dietetic or light may not be sugar free.
• Limit your intake of simple carbohydrates such as white bread, white rice, &
pasta. Use whole grain bread, whole wheat pasta instead.
POTASSIUM
Potassium is a mineral that helps keep your heartbeat regular and your muscles
working properly. Certain medications and/or poor kidney function may cause blood
potassium (K) levels to become too high and a low K diet is needed (not more than
2300 mg per day). You will not feel any specific symptoms if your potassium is high
(the normal range is 3.5-5.0). You only need to restrict K+ in your diet if your blood
levels are running high. To limit your intake of K+, follow the guidelines below.
When cooking vegetables, use a lot of water and drain before serving. Drain canned
fruits and vegetables and discard the liquid; add fresh water if needed for cooking.
Avoid salt substitute (potassium chloride) or foods made with it.
After Your Liver Transplant
73
AVOID THESE HIGH POTASSIUM FOODS
(greater than 200 - 250 mg/serving)
FRUITS
Apricots
Avocado
Banana
Cantaloupe
Dates
Dried Fruits
Elderberries
Figs (dried)
Guava
Honeydew
Kiwi
Mango
Nectarines
Oranges
Orange Juice
Papaya
Passion Fruit
Juice
Pomegranate
Prunes
Prune Juice
Raisins
Tangerine Juice
After Your Liver Transplant
VEGETABLES
Artichoke
Hearts
Beans:
adzuki
baked
black
broad
butter
kidney
lima
northern
pinto
refried
Carrot Juice
Brussel Sprouts
Falafel
Lentils
Okra
Peas: blackeye
split
Potatoes: baked
canned
chips
fried
sweet
Pumpkin
Soybeans
Spinach
Squash: acorn
butternut
hubbard
zucchini
Tomatoes
Tomato
Juice/Sauce
Vegetable Juice
Wax Beans
Yams
OTHER
Allbran cereal
Catsup (limit to
2T)
Cereal with fruit
and nuts
Chocolate milk
Cocoa
Coffee (limit to
2 cups)
Hot Chocolate
Instant Breakfst
Intn'tnl Coffees
Molasses
Nuts (limit to
1 oz.)
Peanut butter
(limit to 2T.)
Salt substitute/
Lite salt
Soy Flour
Wheat Bran
Wheat Germ
74
LIMIT THESE FOODS (150 - 200 MG/SERVING)
Follow recommended serving sizes:
1 serving = 1 med. fruit or 1/2 cup fruit/vegetable or juice.
FRUITS
(limit to 3
servings per
day)
Apples
Applesauce
Apple Juice
Apricot nectar
Blackberries
Boysenberries
Cherries
Cranberries
Cranberry Juice
Cranberry
Sauce (1 cup)
Figs (canned in
syrup)
Fruit cocktail
Fruit Salad
Gooseberries
Grapes
Grape Juice
Grapefruit Juice
Kumquat
Lyches (raw or
canned)
Mandarin
Colors
Mulberries
(raw)
Nectarine (1/2)
Orange (1/2)
Papaya Nectar
Passion Fruit
Peaches
After Your Liver Transplant
Peach Nectar
Pears
Pear Nectar
Pineapple
Pineapple Juice
Plums
Prunes (canned
in syrup)
Raspberries
Strawberries
Tangerine
Watermelon
VEGETABLES
(limit to 2
servings per
day)
Alfalfa Sprouts
Asparagus
Beets
Broccoli
Cabbage
Carrots
Cauliflower
Corn
Cucumber (1
cup)
Eggplant
Green Beans
Green Peas
Green Pepper (1
cup)
Greens:
Collard
Mustard
Kale
Dandelion
Beet
Turnip
Hot Peppers
Leeks
Lettuce (1 cup)
Mushrooms
Olives
Onions
Potatoes
(skinned,
soaked, and
boiled)
Pumpkin
Flowers
Radishes
Rhubarb
Sauerkraut
Spaghetti
Squash
Tofu
Turnips
DAIRY
PRODUCTS
(1-2 cups per
day)
Milk
Ice Cream
Yogurt
Pudding
75
TELEPHONE NUMBERS
Billing (Surgical)
(914)594-3239
Centers For Disease Control International Travel Hotline
(404)332-4559
Medic Alert
1(800)432-5378
New York Organ Donor Network
1(800)GIFT-4-NY
Paging Operator (Hospital)
(914)493-7000
Patient Accounts
(914)493-2840
Patient Relations
(914)493-8877
Social Work Office
(914)493-7641
Transplant Office
(914)493-8916
Transplant Psychiatric Consultant
(914)493-1934
TRIO (International Office)
1(800)TRIO-386
(Westchester Chapter) TSO
(914)576-6617
After Your Liver Transplant
76
PATIENT RESOURCES
TRANSPLANT SUPPORT GROUPS
TSO – Transplant Support Organization – Westchester Chapter
1154 Webster Avenue
New Rochelle, NY 10804
Jeff Graham, President
(914) 576-6617
TSO97@optonline.net
www.transplantsupport.org
TSO – Transplant Support Organization – Staten Island Chapter
Barbara Stratakis
(718) 967-1588
Babs1928@aol.co
TRIO – Transplant Recipients International Organization – Long Island Chapter
PO Box 81
Garden City, NY 11530
(516) 942-4940; (31) 421-3258
www.litrio.com
litrio@verizon.net
TRIO – Transplant Recipients International Organization – National
217 L Street, NW, #33
Washington, DC 0037
(800) TRIO-386
www.trioweb.org
TSL – Transplants Save Lives – Rockland Chapter
PO Box 516
Nanuet, NY 10954
Nicholas Cinalli and Sue Negrin, Co-Presidents
Newheart93@aol.com
After Your Liver Transplant
77
ORGANIZATIONS AND WEBSITES
LOLA – Latino Organization for Liver Awareness
www.lola-national.org
American Diabetes Association – excellent information about Type I and Type II diabetes
Attn: National Call Center
1701 North Beauregard Street
Alexandria, VA 2231
(800) DIABETES
www.diabetes.org
American Liver Foundation – knowledge and support for people with liver disease.
www.liverfoundation.org
American Society of Transplantation – patient educational brochures in English and Spanish
www.a-s-t.org
Centerspan – news, government and professional articles relating to transplant
www.centerspan.org
Children’s Organ Transplant Association (COTA) – resources for children with transplants (online brochure)
www.cota.org
National Transplant Assistance Fund (NTAF) – assists patients with fundraising and provide
grants for eligible patients.
www.transplantfund.org
Transplant Living – sponsored by UNOS, provides patients with information regarding
transplant
www.transplantliving.com
Transplant Patient Partnering Program (TPPP) – patient education materials
www.tppp.net
Transweb – news and events for transplant patients
www.transweb.org
After Your Liver Transplant
78
National Foundation for Transplants – healthcare and financial support services and patient
advocacy for transplant candidates, recipients and their families.
1102 Brookfield
Suite 200
Memphis, TN 38119
(800) 489-3863
www.transplants.org
United Network for Organ Sharing (UNOS) – statistics about transplants and transplant centers
PO Box 2484
Richmond, VA 23218
(804) 782-4800
www.unos.org
After Your Liver Transplant
79
LIVER TRANSPLANT TEST
NAME:
MATCHING
1.
Adjusted only by transplant surgeons
A.
Prednisone (Deltasone)
2.
Need to check with coordinator first
B.
Mycostatin (Nystatin)
3.
Do not take on an empty stomach
C.
Over-the-counter medicine
4.
Swish and swallow to prevent mouth
fungus
D.
Bactrim, Dapsone, or Mepron
E.
Immunosuppressant medications
5.
Prevents a deadly type of pneumonia
MULTIPLE CHOICE
Circle the correct answer(s).
Prograf(FK-506) Patients Only:
6. Side effects of Prograf- (FK-506) include all of the following EXCEPT:
A.
B.
C.
D.
E.
Headache
nausea/vomiting
difficulty sleeping
weight gain
burning/tingling of hands and feet
Neoral Patients Only
7. Side effects of Neoral/Gengraf include all of the following EXCEPT:
A.
B.
C.
D.
headache
high blood pressure
excessive hair growth
weight gain
After Your Liver Transplant
E.
burning/tingling of hands and feet
80
8. Common side effects of Prednisone include:
A.
B.
C.
D.
E.
stomach irritation
sensitivity to sunlight
swelling of the face
mood changes
all of the above
9. Prior to EVERY dental procedure, even a teeth cleaning, you should take the following
medication before and after your dental visit:
A.
B.
C
D.
Prednisone
antibiotics
pain medication
a gram of Solu-Medrol
10. Activities to AVOID following transplantation include:
A.
B.
C.
D.
E.
seat belt use
alcoholic beverages
safe sexual activity
exercise
all of the above
11. Your responsibilities when you return home include:
A.
B.
C.
having labs drawn as scheduled
calling/mailing lab results to your coordinator
A&B
12. Which of the following IS permitted after transplantation?
A.
B.
C.
D.
Gardening without gloves
Emptying the cat litter box
Exposure to people known to have contagious infections
Tetanus shots
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81
13. If you are exposed to chicken pox, you need to:
A.
B.
C.
D.
Contact your transplant coordinator
Always get an injection of Zoster Immune Globulin
Be quarantined
Have your labs checked within 48 hours
14. If you have a cold, you should:
A.
B.
C
D.
Keep track of your temperature
See your local doctor to see if you have a serious infection requiring antibiotics
Call your transplant coordinator before taking any cold medications including over the
counter medications
All of the above
15. If you are in contact with a child who is to receive an oral polio vaccination, you should:
A.
B.
C.
D.
Avoid ALL contact for 8 weeks after vaccination.
Arrange for the child to receive the injection (inactivated virus) instead of the oral
vaccine
(live virus)
Either of the above
Do nothing
16. If you are admitted to the local hospital you should:
A.
B.
C.
D.
Inform your transplant coordinator only if the problem involves your liver
Inform your transplant coordinator only if you are going to have surgery
Inform your transplant coordinator only if you have an infection
Inform your transplant coordinator for any reason
17. If your local doctor prescribes a new medication, you need to:
A.
B.
C.
D.
Inform your coordinator
Have your local doctor give you a written prescription or call it in to your pharmacy
Report side effects to your local doctor and your coordinator
All of the above
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18. You need to inform your coordinator of any medication changes by other doctors because:
A.
B.
C.
D.
E.
It may affect your liver
It may affect your kidneys
It may affect your ability to fight infections
It may affect the way your Prograf (FK-506) or cyclosporine is absorbed
All of the above
19. A swelling in a lymph gland:
A.
B.
C.
D.
E.
Should be reported to your transplant coordinator immediately
May require a biopsy
May require reducing immunosuppressants
Can be life-threatening if ignored
All of the above
20. When filling out your Medic Alert you should include:
A.
B.
C.
D.
"Liver Transplant on Immunosuppressants"
Any allergies you have
Any other medical conditions
All of the above
21. You are taking Prednisone 20 mg. a day and you have four 5 mg. tablets left. You should:
A.
B.
C.
Check the bottle to see if you have refills and get it refilled within 4 days
Check the bottle for refills and get it refilled immediately
Check the bottle for refill; if none left, you no longer need to take it
22. As an immunosuppressed transplant patient, you should avoid:
A.
B.
C.
D.
Wearing contact lenses
Crowds
Flu shots
Excessive exposure to the sun
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23. Which of the following is NOT recommended for transplant recipients:
A.
B.
C.
D.
Latex condoms
Working full-time
Becoming pregnant during the first year after transplant
Safe sex
24. To maintain a healthy lifestyle, you should:
A.
B.
C.
D.
E.
Avoid cigarette smoking
Eat a healthy diet
Get adequate rest
Exercise at least three times a week
All of the above
25. You may swim:
A.
B.
C.
D.
After all of your incisions and wounds are healed
After all your tubes, catheters, drains are removed
In chlorinated pools
All of the above
26. Which of the following is NOT a sign of liver rejection:
A.
B.
C.
D.
Yellow eyes and skin
Elevated liver enzymes
Headaches
Ongoing tiredness
27. Which of the following should be avoided to decrease your risk of infection:
A.
B.
C.
D.
Construction sites
Composts
Swimming in possibly contaminated waters
All of the above
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84
28. Immunosuppressant medication:
A.
B.
C.
D.
Prevents rejection
Puts you at greater risk of infection
Should only be adjusted by a transplant surgeon
All of the above
29. The immunosuppressant medications I take to prevent rejection are:
30. The medication I take to prevent pneumocystis pneumonia (PCP) is:
31. As an immunosuppressed transplant recipient, you should avoid excessive exposure to the
sun because:
A.
B.
C.
D.
It causes premature aging
It can block the immunosuppresant effects
You can become jaundiced
It can further increase your cancer risk
TRUE OR FALSE
32. It is necessary to check with your coordinator prior to taking over-the-counter medications.
33. An elevation in your liver function tests is usually the first sign of rejection.
34. Cyclosporine/Prograf (FK-506) blood test levels need to be drawn immediately after your
morning dose.
35. Rejection can occur at any time.
36. You can be having rejection if you are feeling well
37. Tylenol should not be taken to lower fever of 101°F (38.4°C) before calling your doctor or
coordinator.
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85
38. An injection of a live vaccine can cause the disease trying to be prevented in an
immunosuppressed transplant patient.
39. If your fever is gone, then you couldn't have an infection.
40. You need to inform your transplant coordinator whenever your local doctor stops or starts
a medication, either prescription or over-the-counter.
41.You should inform your coordinator of your weight, blood pressure, temperature, and heart
rate at least every six months.
BONUS QUESTIONS
42. Your transplant coordinator is:
43. Your social worker is:
44. The telephone number for the Liver Transplant Office is:
Please see your transplant coordinator or your nurse when you have completed your test so that
it may be reviewed with you.
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86
Liver Transplant Test Answers
1. E
2. C
3. A
4. B
5. D
6. D
7. D
8. E
9. B
10. B
11. C
12. D
13. A
14. D
15. C
After Your Liver Transplant
16. D
17. D
18. E
19. E
20. D
21. B
22. D
23. C
24. E
25. D
26. C
27. D
28. D
29. *
30. *
31. D
32. True
33. True
34. False
35. True
36. True
37. True
38. True
39. False
40. True
41. True
42. *
43. *
44. (914) 493-8916
87
GLOSSARY
Acute
Having a rapid onset and short course. Not chronic.
Angiogram
A diagnostic test done to determine if blood is flowing through particular
blood vessels.
Antibody
A protein produced by the body to eliminate foreign substances, such as
bacteria or viruses.
Ascites
Excess fluid in the abdomen.
Bile
A fluid produced by the liver, stored in the gallbladder, and released into the
small intestine to absorb fat.
Bile Ducts
The tubes bile flows through in your liver.
Bile Leak
A hole in the bile-duct system that causes bile to leak into the abdominal
cavity. Symptoms include abdominal pain and fever.
Bilirubin
Yellow substance in bile produced when red blood cells are broken down.
Elevation of bilirubin can indicate liver disease, a bile duct obstruction,
rejection, or other diagnoses.
Biopsy
A diagnostic test in which a small amount of tissue is removed and
examined microscopically.
Blood Urea
Nitrogen (BUN) A bi-product of protein breakdown. Many factors can affect BUN. Can be
an indication of kidney function. Routinely checked in laboratory studies.
Cholangiogram
A diagnostic test whereby dye is injected into the bile ducts and the ducts are
x-rayed.
Chronic
Having a slow onset and long course. Not acute.
Cirrhosis
An irreversible scarring of the liver.
Contaminate
To introduce infectious or possibly infectious material.
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88
Creatinine
A product of protein metabolism, which indicates kidney function.
Routinely checked in laboratory results.
Cytomegalovirus A virus of the herpes family. Present in most of the adult population.
(CMV)
Can cause active infection when immunosuppressed. Virus can
cause infection in the stomach, blood, liver, lungs, eyes and other organs.
Diagnosis
A disease or disorder that one has.
Diagnostic
The use of medical tests and skills to determine the nature of disease.
Edema
Excess body fluid.
Harvesting
Injury
Injury to a transplanted liver caused by lack of blood supply during the time
the liver is being transferred from the donor to the recipient. Also called
ischemic injury.
Hematocrit
A measure of the red blood cell content. Can be decreased due to bleeding,
anemia, or other factors.
Hepatic
Related to the liver.
Hepatitis
An inflammation (injury) of the liver. May be caused by a virus, as in
Hepatitis A, Hepatitis B, or Hepatitis C, or CMV Hepatitis. May also be
caused by chemical exposure or an immune disorder against your own body.
Hyperglycemia
High blood sugars.
Hypertension
High blood pressure.
Ischemic Injury See Harvesting Injury.
Jaundice
After Your Liver Transplant
A yellowing of the eyes and skin caused by excess bile. Can be a sign of
rejection, bile duct obstruction, or liver disease.
89
Liver Enzymes
Substances produced by the liver and released into the blood. Routinely
checked in laboratory studies to monitor liver functioning and detect
rejection. These include:
•
•
•
•
Alk Phos - Alkaline Phosphatase
ALT (SGPT)
AST (SGOT)
Gamma GTP
Many factors can cause liver enzymes to be elevated, such as rejection, bile
duct obstructions, or infection.
PCP
Pneumocystis carinii pneumonia, a type of pneumonia seen in
immunosuppressed patients. Can be prevented by medication.
Platelet
A type of blood cell necessary for blood clotting.
Potassium
A mineral necessary for normal functioning, especially muscle function.
Routinely checked in laboratory studies. High or low levels can be
dangerous.
Preservation
Injury
See Harvesting Injury.
Prophylaxis
Treatment or medication used to prevent disease.
PTLD
Post-transplant lymphoproliferative disorder. A tumor-like swelling in the
lymph nodes seen in immunosuppressed patients. Can become cancerous if
not treated.
Rejection
Identification of a foreign object by the immune system and the attempts to
destroy it.
Renal
Related to the kidney.
Stenosis
or Stricture
A narrowing.
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90
Ultrasound
White Blood
Cells (WBC)
A diagnostic test, using high frequency sound waves, that shows structure of
internal organs. Often used in liver transplant recipients to check openness
of bile ducts and blood vessels to the liver. Also called sonogram.
A blood cell that fights infection. This is a routine laboratory level
that will be checked. Your count may be increased when infection is present.
When count decreased (by medication reactions), it is more difficult for your
body to fight off infections.
We would like to acknowledge Judy Kovalak, Kara Bennorth, Terry Schlanger and Maureen
Burke-Davis for their help in compiling this book.
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