LiverTransplant

Handbook

Supported by an educational grant from Fujisawa Healthcare, Inc. ©2003

I T N S

YourLiverTransplant

YourLiverTransplantA Guide For Your Healthcare After Liver Transplantation

www.itns.org

Liver Handbook

Tracey Dudley RN, BSC Post-transplant Hepatitis Nurse Specialist

The Liver Transplant and Hepato-biliary Surgery UnitQueen Elizabeth Hospital

Birmingham, UK

William McGhee Pharm.D.Adjunct Assistant Professor of

Pharmacy and TherapeuticsClinical Pharmacy Specialist

University of Pittsburgh School of Medicine

Jorge Reyes MD, FACS, FAAPProfessor of Surgery

Thomas E. Starzl Transplantation InstituteUniversity of Pittsburgh

Mimi Funovitz RN, BSN, CCTCTransplant Coordinator

Thomas E. Starzl Transplantation InstituteUniversity of Pittsburgh

Beth Kassalan MBAExecutive Director

International Transplant Nurses Society

Jane Hartman RNPatient Care Coordinator

Multi-Organ Transplant Program, London Health Sciences Center

London, OntarioCanada

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Beverly Park MSN, CRNPClinical Nurse Specialist

Starzl Transplantation InstituteChildren's Hospital of Pittsburgh

Liver Transplant HandbookA guide for your health care after liver transplantation

ITNS would also like to acknowledge the following Past-Presidents who developed the first ITNS Liver Transplant Handbook (1995):

Nancy Stitt RNITNS Past-President 1993

Kandy Yarris Newell RN, BSN, CCTCITNS Past-President 1994

Les Wheeler RN, MSITNS Past-President 1995

CONTRIBUTORS AND REVIEWERS

Liver Handbook

Congratulations on your recovery following liver transplant!

This manual will provide youwith important informationabout your care as you andyour family prepare fordischarge from the hospital.

This may have been a challenging time foryou and your family as you endured thesymptoms and complications of your liverdisease, waited for a suitable organ, andfinally received your transplant. As you arelearning by now, liver transplantation is farmore than the operation you recentlyexperienced. Now that you are recovering,it is important for you to learn about yourcare so that you will have the best possibleoutcome with your healthy liver. You arethe most important member of the transplantteam and active participation in your carewill lead to your successful recovery.

Having a liver transplant has given you asecond chance at a healthier, more activelife, but also brings new and importantresponsibilities for your care.

PurposeThis handbook is intended to provide informationabout life after liver transplantation. Itincludes information about common healthcareroutines, medications, clinic visits, monitoringguidelines, activities of daily living, signsand symptoms of possible complications,and how to contact your healthcare team.

This handbook is designed as a generalreference for care after liver transplantation.Transplant centers often have different careroutines, monitoring guidelines, andimmunosuppressive routines following livertransplant, so it is always very important tocheck with your transplant coordinatorwhen you have questions or concerns aboutany aspect of your care. It is important toreview this handbook with your nurse,transplant coordinator, or clinical nursespecialist to understand your center’s specificguidelines. Your center’s specificguidelines should always be followed.

Your ResponsibilitiesAs the most important caretaker of thetransplanted liver, you will need to:

✓ Know all your medications: • Why am I taking this medication?• What is my dose?• When should I take this medicine?• What are the side effects of my medicines?• Are there any special instructions for

my medicines?

✓ Follow your medication schedule dailyand make changes only as ordered by yourphysician.

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✓ Maintain routine contact with yourtransplant team through your transplantcoordinator.

• My transplant coordinator is: ________________________________• Phone number:________________________________• Fax number:________________________________• Email address:________________________________

✓ Attend follow-up appointments and/ortransplant clinic as instructed.

• My first clinic appointment is:________________________________• Clinic is located at:________________________________• My appointment time is:________________________________

✓ Have blood tests drawn as required.• I need to have my blood tests drawn every:________________________________• I will get my blood tests drawn at:________________________________• Any special instructions:________________________________________________________________________________________________

✓ Monitor your weight, blood pressure, andtemperature as required.

• My discharge weight is:________________________________• My normal blood pressure is:________________________________• I should call my coordinator if my temperature is > _________ or if my blood pressure is > ______________.

✓ Maintain a healthy lifestyle that includesa balanced diet, regular exercise, androutine check-ups.

Your Transplant TeamAs you have progressed through thetransplant process, you have becomeacquainted with many members of thetransplant team. After transplant, it isimportant that you maintain regular contactwith the team. They will continue to provideadvice and support for you and your family.Team members usually include:

Transplant SurgeonTransplant surgeons are medical doctorswho specialize in liver surgery andtransplantation. The surgeons perform theoperation and will be involved in your careand medical management as you recoverfrom surgery.

My transplant surgeon(s):

________________________________

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HepatologistA hepatologist is a medical doctor whospecializes in medical problems of the liver.You may have seen a hepatologist beforeyour transplant.

My hepatologist:

________________________________

Management varies by transplant center, soyou may have follow-up care with yourtransplant physician, transplant surgeon, orhepatologist. They will be responsible forthe management of anti-rejection medicationsand any medical issues directly related tothe transplant. For health problems notrelated to your liver transplant, you shouldcontinue to contact your local physician orgeneral practitioner. Your transplant coordinatorwill help you plan your follow-up care afteryou leave the transplant center.

Transplant Coordinator (RN, CCTC)Transplant coordinators, usually licensedregistered nurses (RN), have extensiveexperience in the care and management oftransplant recipients, both before and aftertransplant. Your coordinator will beinvolved in preparing you for discharge aswell as your long-term outpatient care.Your coordinator may refer you to otherteam members for services that you needand will be available to discuss anyquestions or concerns you may have as youbegin to adapt to life following yourtransplant. If you notice the initials CCTCafter your coordinator's name it means thathe or she is a Certified Clinical TransplantCoordinator.

My coordinator:

________________________________

Phone: __________________________

Social Worker (MSW)A transplant social worker specializes inhelping patients and families cope with thestresses and challenges of the transplantprocess. Your social worker may help youby identifying community supports, assistingyou with housing while staying in thehospital community, helping with financialdifficulties, providing emotional support,and providing information and referrals forsupport groups or counseling.

My social worker:

________________________________

Phone: __________________________

Clinical Nurse Specialist (CNS)A clinical nurse specialist is a registerednurse with an advanced practice degree in anursing specialty. The transplant clinicalnurse specialist is usually involved in thetransplant evaluation as well aspost-transplant care and will provideinformation on all facets of the transplantprocess, assess any potential problems,provide supportive care, and will helpprepare you for discharge. This nurse maybe involved with your care while you are inthe hospital and after discharge.

My CNS:

________________________________

Phone: __________________________

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Your Transplant Team

Liver Handbook

Pharmacist A pharmacist is a licensed medicalprofessional who dispenses prescriptionmedications. As part of the transplant team,the transplant pharmacist may help monitoryour medications while you are in the hospitaland at clinic visits. The pharmacist may alsobe involved in your discharge teaching and willprovide information about your medicationsand instructions on how to take them.

My pharmacy: ________________________________Phone: ________________________________

DieticianA dietician specializes in aspects of diet andnutrition. As part of the transplant team, yourdietician will help manage your nutritionbefore and after transplant. The dieticianmay also work with you on any specialdietary instructions or diets for medicalcomplications such as diabetes, high bloodpressure, high potassium levels, or highcholesterol.

My dietician: ________________________________Phone: ________________________________

MedicationsOne of the most important responsibilitiesyou will have after transplant is taking yourmedications as they are prescribed. Youwill learn about your medications beforeyou leave the hospital, but you shouldcontact your transplant coordinator if youhave any further questions or concerns. Asyou learn about your medications, be surethat you know and understand the followingfor each medication:

✓ The brand name and generic nameMedications are known by two differentnames. The brand name is the name givento the medication by the pharmaceuticalcompany that produces it. The genericname is the common, non-branded name ofthat medication. There can be several brandnames for a generic medication.

✓ The purpose or reason for taking each medication

A medication often has more than one useand may be prescribed for different reasons.You should always know why you aretaking each medication.

✓ What each medication looks likeIt is important that you are able to recognizeeach medication by color, shape, and size.Many medications have a similar appearancewith only slight differences and must belooked at closely to be sure the correctmedication is being taken.

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✓ When to take each medicationSome medications, such as the anti-rejectionmedications Prograf® (tacrolimus) or Neoral®

(cyclosporine) must be taken on time dailyso that the level of medication in yourblood stays stable to help prevent rejection.It is important to know what time you takeeach medication. Work with yourcoordinator or nurse to arrange amedication schedule that is easy to followwith your daily routine.

✓ How to take each medicationYou probably take most of your medicationsby swallowing a pill or capsule. Occasionally,particularly for children, a pill may bedivided or crushed and mixed with food orliquids. Discuss how to take each of yourmedications with your nurse or coordinator.

✓ How long each medication is prescribed Some medications may be prescribed onlyfor 7-14 days, such as antibiotics. Others,like your anti-rejection medications, areusually prescribed for your lifetime.Some medications can be discontinuedafter a complication or side effect hasresolved.

✓ The most common side effectsEvery medication has side effects, but theseare not experienced by everyone. Youshould know the most common side effectsthat each medication may cause and whatwill be done to relieve that side effect.

✓ Any special instructionsSome medications must be taken with foodor on an empty stomach, or separated fromcertain meds. Discuss any specialinstructions for your medications with yournurse, pharmacist, or coordinator.

✓ What to do if you are late, miss a dose, or forget to take a dose

If you are very late taking a medication orhave skipped a dose, either because youforgot or you have been vomiting, call yourtransplant coordinator. After asking you afew questions and considering your currenthealth status, your coordinator will adviseyou on what to do.

✓ How to order your medicationsYour transplant coordinator, nurse, or socialworker will help you find the mostconvenient way to order your medications.Be sure that you have all your prescriptionsbefore you leave the hospital.

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✓ When to order your refills/repeat prescriptions

The number of refills you have for eachmedication depends on how long you willbe taking the medication, as well as whatyour insurance coverage will allow. Oncethe prescription has been submitted to yourpharmacy, you may call for refills/repeatprescriptions. However, all new prescriptionsand any changes in the meds you arealready taking must be called in or sent toyour pharmacy by your physician. It isvery important to monitor the number ofpills you have so you can order your refillsin time or call your coordinator to do this sothat you avoid missing any doses. Youshould always have a 1-2 week supply.

✓ What is my cost for my medications?It is also important that you know yourfinancial responsibility for your medicationsso you can plan ahead. In the US, somemedications may be completely covered byinsurance, while others have co-pays. Often,insurance companies have a deductible youmust meet until their coverage begins. Itmay be helpful for you or a family memberto call your case manager or approvedpharmacy provider before your medicationsare ordered. A toll-free number for“prescriptive authorization” is usually onthe back of insurance cards. This contactperson should be able to tell you what yourcost is for each prescribed medication.

Internationally, medication costs vary fromcountry to country. You should discuss thepossible cost of your prescriptions withyour transplant coordinator.

MedicationGuidelines

Medications should be taken daily, always asprescribed. Taking your medications correctlyand following your medication scheduledaily will help you achieve a healthy, activelife as a transplant recipient. Liver rejectioncan occur at any time as a result of misseddoses of anti-rejection medications.

Call your coordinator if you:• are unable to take you medications because

you are nauseated, feeling sick, or vomiting• have diarrhea and are worried that you are

not absorbing your medications• have forgotten to take your medication or

missed any doses due to illness• think that the directions on the medication

label from the pharmacy are different thanwhat you were told

• feel you are having an unusual reaction or side effects to a medication

• want to take Tylenol® (acetaminophen) or Advil® (ibuprofen) for fever (see Fever, page 24 )

• want to take an over-the-counter cold remedy, cough suppressant, diet aid, herbalmedicine, or medication that you have notpreviously discussed with your doctor

• are ordered any new medications by your local physician or if any changes are madeto your current medications by another physician.

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Medications

Liver Handbook

Organize a medication schedule that fitswell with your daily routine.• Work with your transplant coordinator,

nurse, or pharmacist to arrange a schedulethat fits into your daily routine so thattaking medications is most convenient for you. A comfortable schedule will improveyour success for taking all your meds at the right time every day.

• Some people find it helpful to follow a written schedule or a check-off list. Pill reminder containers and medication alarmsmay also be helpful. Pill containers can be stocked with a week's supply ofmedications. Medication alarms are also available and can be set to remind you to take your medications on time.

• Always keep a copy of your medication schedule with you. If you are seen in clinic, your doctor’s office, or in anemergency room, it will help to have a current list of your medications available.

• It is difficult for some people to take medicines that are prescribed three or fourtimes a day. If this is a problem for you, talk to your doctor about the possibility ofchanging the dosage so that it may be taken less frequently. Unfortunately, dosages can not always be changed.

Storing your medications• Keep medications in the original containers

with the caps closed. If you use a pill reminder container, keep the container sealed. It is important that you can recognize different medications when theyare together in a pill container in case a dose has changed.

• Store your meds in a cool, dry place awayfrom sunlight. Do not store meds in the bathroom since moisture may interfere with the medication’s effectiveness.

• Do not store meds in a refrigerator unless instructed to do so by your pharmacist.

• Keep all medications in a safe place, out of reach of children.

• It may be helpful to keep a few doses of your medications in another place, aside from your household. Sometimes transplantrecipients will store extra doses of anti-rejection medications at a family member’s house or in their office in case of an emergency.

• It may be helpful to bring yourmedications, filled med container and/or medication list with you for clinic visits or if you are admitted to the hospital. Thiswill insure that you won’t miss any doses.

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Medication Guidlines

Liver Handbook

Commonly Prescribed Medications Following Liver Transplantation

Anti-Rejection Medications

Tacrolimus (Prograf®)

Purpose: Tacrolimus is used to prevent ortreat rejection after liver transplant. Itprevents rejection by inhibiting certain cellsin the immune system. Tacrolimus may bethe only immunosuppressant medicationprescribed for you, but some transplantpatients take tacrolimus as well as one or twoother anti-rejection medications such as steroids(prednisone/prednisolone), azathioprine(Imuran®), mycophenolate mofetil(Cellcept®), or sirolimus (Rapamune®).

Dosage: Tacrolimus is available in 0.5 mg(yellow), 1 mg (white), and 5 mg (pink)capsules. It is usually dosed twice dailyand doses should be taken 12 hours apart.Tacrolimus should be taken on time every dayto insure a stable level of immunosuppression.

Side effects: The side effects of tacrolimusvary and are usually related to the bloodlevel of the drug. The most common sideeffects are:

Nervous system side effects (neurotoxicities):These side effects are more commonly seenwith a high tacrolimus level (>15 ng/ml)and usually resolve as the level is decreased.High tacrolimus levels may cause headache,insomnia (trouble sleeping), numbness andtingling of the hands and feet, hand tremors,or an increased sensitivity to bright orblinking lights. Aphasia (difficulty speaking)and seizures are very rare side effects, buthave occurred with very high levels.

Kidney dysfunction (nephrotoxicities):Tacrolimus can affect the kidneys by causingtiny arteries, called arterioles, to get smalleror constrict. When this happens, high bloodpressure, high potassium levels, lowmagnesium levels, and/or abnormal kidneyfunction tests may occur.

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The information about these medications ispresented as an overview that includes thepurpose of each medication, the usual dosageand dosage forms, the most common sideeffects, and other significant information.This information is meant to be a generalguide for the liver transplant recipient andis not all-inclusive. Always contact yourtransplant coordinator or your transplant teamto be aware of your center's recommendationsand specific medication protocols.

Some medications may be harmful if youare pregnant. If you are pregnant or planningto become pregnant, your transplant physicianand obstetrician/gynecologist should beconsulted to discuss your medication history,stop any meds that may be harmful, and/orto readjust your immunosuppression, ifnecessary. If you are pregnant or breastfeeding,contact your physician before any newmedications are started or to discuss yourcurrently prescribed medications.

Liver Handbook

Infection: Your immune system is suppressedso that your transplanted liver is not easilyrejected by your body. Because your body’snatural ability to fight infections hasdecreased, you may be more likely to getinfections. You are at greatest risk fordeveloping infections when your tacrolimuslevel is high, usually during the first threemonths after transplant or if you are beingtreated for rejection with higher doses oftacrolimus.

Other side effects that may be experiencedwith tacrolimus are nausea, diarrhea, highblood sugar, and hair loss.

Additional information: • Do not change the dose of tacrolimus or

take it more or less often than prescribed for you by your transplant physician.

• Tacrolimus levels are monitored through blood tests. Levels are monitored daily in the early postoperative period, then lessfrequently over time. Most patients have a tacrolimus level checked monthly by thetime they are several months post-transplant.Levels may range from 15 -18 ng/ml in the early post-operative period or during treatment for rejection, but may decrease to 5-10 ng/ml after 1-2 years.

• Your tacrolimus level should be drawn 1-2hours before taking a dose, or about 10-12hours after the previous dose. This is called a trough (lowest point) level. When you have your blood work done, donot take your tacrolimus, but bring a dose with you to take after your labs have beendrawn.

• Your tacrolimus dose may be increased during an episode of rejection or to preventrejection. The dose may be decreased if you have an infection or if you have problems with side effects of the drug.

• Food can affect the tacrolimus level and may lower it by as much as 30%. Some transplant centers prefer that patients not eat for an hour before or after taking tacrolimus. Please check with you coordinator or transplant pharmacist for your center's guidelines. A light breakfastor meal appears to have no effect on tacrolimus absorption. It is important to be consistent in the way and time you take tacrolimus daily to maintain a stable level.

• You should not eat grapefruit or drink grapefruit juice when prescribed tacrolimus. An ingredient in grapefruit can decrease the metabolism (breakdown)of tacrolimus, causing a higher level.

• Do not take tacrolimus within 2 hours of taking any antacids such as Carafate®, Mylanta®, or Tums®. Tacrolimus should betaken 3-4 hours from sodium bicarbonate.

• Tacrolimus interacts with some other medications, causing higher or lower levels.Always check with your transplant coordinator before starting any new medication to be sure that it does not interfere with tacrolimus.

• If you miss a dose of tacrolimus, take it assoon as you remember. If it is near the time for the next dose, skip the missed dose and resume your regular dosing schedule. Call your transplant coordinatorif you have missed a dose as your levels may need to be monitored more frequently.

• Store tacrolimus capsules at room temperature.

• If you are planning to become pregnant, discuss the use of tacrolimus with your transplant physician and obstetrician/gynecologist.

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Prescribed Medications

Liver Handbook

Cyclosporine(Sandimmune®, Neoral®)

Purpose: Cyclosporine is used to preventor treat rejection after transplant. It preventsrejection by inhibiting certain cells in theimmune system. Cyclosporine may be theonly immunosuppressant that is prescribedfor you, but it is often prescribed to be takenwith steroids (prednisone/prednisolone),azathioprine (Imuran®), sirolimus (Rapamune®),or mycophenolate mofetil (Cellcept®).

Dosage: Cyclosporine is available asNeoral (grey capsules) and Sandimmune(pink capsules) in 25 mg, 50 mg, and 100mg capsules. Neoral and Sandimmune aredifferent forms of cyclosporine and yourbody absorbs them differently. Be sure thatyour pharmacy always gives you the brand ofcyclosporine that has been prescribed for you.

Cyclosporine is also available as a liquid(100 mg cyclosporine/ 1 ml). You may findthat the liquid form of cyclosporine tastesbetter if diluted with milk, chocolate milk,or orange juice. Mix cyclosporine and aroom-temperature liquid in a glass or cupand stir it with a metal spoon. Styrofoamcups and plastic are porous and should notbe used since some cyclosporine couldcling to the foam container or plastic.

Cyclosporine is usually dosed once or twicedaily and should be taken at the same timeeach day to insure a stable level ofimmunosuppression.

Side effects: The side effects of cyclosporinevary and are usually related to the level ofthe drug. The most common side effects are:

Nervous system side effects (neurotoxicities):These side effects are more commonly seenwith a high level and usually resolve as thelevel is lowered. High levels of cyclosporinemay cause headache, hand tremors, troublesleeping (insomnia), numbness and tinglingof the hands and feet, or an increasedsensitivity to bright or blinking lights.

Kidney dysfunction (nephrotoxicities):Cyclosporine can affect the kidneys bycausing tiny arteries, called arterioles, to getsmaller or constrict. When this happens,patients sometimes have high blood pressure,high potassium levels, low magnesiumlevels, and/or abnormal kidney function tests.

Infection: Your immune system is suppressed so that your transplanted liver isnot easily rejected by your body. Becauseyour body’s natural ability to fight infectionshas decreased, you may be more likely toget infections. You are most at risk fordeveloping infections when yourcyclosporine level is high, during the firstthree months after transplant, and if you aretreated for rejection with higher doses.

Other side effects of cyclosporine include:a high cholesterol level in the blood,excessive hair growth, and swelling orovergrowth of the gums.

Additional information: • Do not change the dose of cyclosporine or

take it more or less often than prescribed for you by your transplant physician.

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• Cyclosporine levels are monitored with your routine labs. Levels are monitored daily early after transplant, then lessfrequently over time. Most patients have a cyclosporine level checked monthly or every other month by the time they are several months post-transplant. Levels are usually lowered slowly over time if liver function tests are normal.

• Your cyclosporine level should be drawn 1-2 hours before taking a dose, or about 10-12 hours after the previous dose. This is called a trough (lowest point) level. Whenyou have your blood work done, do not take your cyclosporine, but bring a dose with you to take after your labs have been drawn.

• Your cyclosporine dose may be increased during an episode of rejection or to preventrejection. The dose may be decreased if you have an infection or if you haveproblems with side effects of the drug.

• It is important to be consistent in the way and time you take your cyclosporine each day to maintain a stable level.

• Do not eat grapefruit or drink grapefruit juice when taking cyclosporine. An ingredient in grapefruit can decrease the breakdown of cyclosporine, causinghigher levels.

• Cyclosporine interacts with some other medications, causing higher or lower levels.Always check with your transplant coordinatorbefore starting any new medication.

• If you miss a dose of cyclosporine, take it as soon as you remember. If it is near the time for the next dose, skip the missed dose and resume your regular dosing schedule. Call your transplant coordinatorif you have missed a dose. Levels may need to be monitored more frequently until the cyclosporine level is stabilized.

• Cyclosporine capsules and liquid should be stored at room temperature away from direct sunlight. An opened bottle of cyclosporine may be used for up to 2 months.

• If you are planning to become pregnant, discuss the use of cyclosporine with your transplant physician and obstetrician/gynecologist.

Prednisone/Prednisolone(Deltasone®)

Purpose: Prednisone is a steroid used tohelp prevent or treat rejection in livertransplantation. It prevents rejection byinhibiting certain cells in the immunesystem and is often given with tacrolimus(Prograf®) or cyclosporine (Neoral®).Although some patients require prednisonefor life, many transplant recipients are beingweaned from steroids within weeks to a fewmonths after transplant.

Dosage: Prednisone/Prednisolone isavailable in several strengths including2.5 mg, 5 mg, 10 mg, and 20 mg tablets. Itis also available in a liquid form. Prednisoneis usually prescribed once daily, but ifprescribed twice daily, doses should betaken about 10-12 hours apart.

Side effects: Prednisone can have manyside effects, but these vary depending onthe dose, frequency and duration of yourtreatment. The most common side effectsinclude: an increased appetite leading toweight gain, stomach irritation and/or

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stomach ulcers, mood changes, irritability,anxiety, and acne. You may also retainfluids which may make your face, hands,and ankles “puffy”. Side effects that canadditionally occur with higher dosages overa longer period of time include: bruising,high blood pressure, high cholesterol levelsin the blood, high blood sugar, muscleweakness, night sweats, osteoporosis (boneweakening), delayed wound healing, growthretardation (in children), vision problemsdue to cataracts, and glaucoma.

Additional information: • Do not change the dose of prednisone/

prednisolone or take it more or less often than prescribed.

• If prescribed once a day, prednisone/ prednisolone should be taken in the morning to avoid insomnia (trouble sleeping).

• If prednisone/prednisolone is to be stopped, the dose must be decreased slowly over several weeks. Stopping prednisone completely may cause serious complications.

• Since prednisone/prednisolone may cause stomach upset, it is best to take it with meals.

• If you miss a dose of prednisone/ prednisolone, take it as soon as you remember. If it is near the time for the next dose, skip the missed dose and resume your regular dosing schedule. Call your transplant coordinator if you have missed a dose. Since your own body’s production of a natural steroid (cortisol) is disturbed when you takeprednisone/prednisolone, missing doses ofprednisone could make you sick.

• If you are taking prednisone/prednisolone,examine your skin routinely for bruising. If you have any wounds that don’t seem

to be healing well, notify your transplant coordinator. Maintain good care of your skin.

• Your physician may advise you to avoid concentrated sweets, like candy bars and soda, while taking prednisone/prednisolone.High blood sugar can develop with higherdoses of steroids. Patients who already have diabetes may find it more difficult tocontrol their blood sugar.

• If you develop a stomach ulcer fromprednisone/prednisolone, you may have an upset stomach or abdominal pain. Sometimes ulcers can cause bleeding which will make your stools look black and tarry. Call your transplant coordinatorwith any of these symptoms so medicationsand treatment can be prescribed promptly.

Sirolimus (Rapamune®)

Purpose: Sirolimus is used to preventrejection in organ transplant recipients. Itprevents rejection by inhibiting certain cellsof the immune system. Sirolimus may bethe only immunosuppressant that isprescribed for you, but in many cases,sirolimus is prescribed to be taken withtacrolimus (Prograf®) or cyclosporine (Neoral®).

Dosage: Sirolimus is available in 1 mgtablets and in a 1 mg/ml liquid. It is usuallytaken once or twice daily and should betaken on time to insure a stable level ofimmunosuppression. The liquid form ofsirolimus should be mixed with 1-2 oz. ofwater or orange juice in a glass or cup. Donot use a styrofoam container since it mayabsorb some of the medication. The tabletshould be swallowed whole and nevercrushed or broken.

Prescribed Medications

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Side effects: The side effects of sirolimusvary and are usually related to the level ofthe drug. The most common side effectsare: an increased risk of infection, nausea,diarrhea, anemia (low blood count), highcholesterol and/or triglyceride levels in theblood, a low white blood cell count,headache, acne, arthritis, and musclecramping. Side effects usually resolve asthe dose is reduced.

Additional information: • Do not change the dose of sirolimus or

take it more or less often than prescribed for you by your transplant physician.

• Check with you transplant coordinator or pharmacist about the correct time to take your dose of sirolimus. Since sirolimus works with tacrolimus and cyclosporine, some centers prefer that sirolimus be taken about 4 hours from these medicationswhile others recommend taking themedications at the same time.

• Sirolimus is usually not started immediatelyafter transplant like other anti-rejections medications. It may be prescribed for youat 6-8 weeks after transplant.

• Your dose of sirolimus may be increased during an episode of rejection. The dose may be decreased if you have an infectionor if you have problems with side effects of the drug.

• If you miss a dose of sirolimus, take it as soon as you remember. If it is near the time for the next dose, skip the missed dose and resume your regular dosing schedule. Call your transplant coordinatorif you have missed a dose.

• Sirolimus tablets should be swallowed whole without crushing or breaking. The medication is coated on the outside of the pill, so breaking or crushing can result in losing some of the drug.

• If you take the liquid form of sirolimus, mix your dose in 1-2 oz. of orange juice or water in a glass or cup, avoiding styrofoam. Rinse the container with another ounce of water or orange juice and swallow that amount as well. You may want to additionally rinse your mouth with more water or orange juice. Some patients have developed mouth ulcers from the liquid form. These ulcers have resolved over time with decreased dosing.

• Store sirolimus tablets at room temperature.The liquid must be refrigerated.

• If you are planning to become pregnant, please discuss the use of sirolimus with your transplant physician andobstetrician/gynecologist.

Azathioprine (Imuran®)

Purpose: Azathioprine is used to helpprevent or treat rejection in organ transplantrecipients. Azathioprine is usually givenwith tacrolimus (Prograf®), cyclosporine(Neoral®), and/or prednisone.

Dose: Azathioprine is available as a 50 mgtablet. It is usually prescribed once dailyand should be given at about the same timeeach day.

Side effects: Azathioprine may lower thenumber of white blood cells in your body,the cells that fight infection. It may alsolower your platelets, which are cells thathelp your blood clot. Other side effectsmay include nausea, vomiting, and rash.Azathioprine may also cause an increase inthe liver functions tests (LFTs).

Prescribed Medications

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Additional information: • Do not change the dose of azathioprine or

give it more or less often than prescribed.• Your dose of azathioprine may be

increased during an episode of rejection. The dose may be decreased if you have aninfection or if you have problems with side effects of the drug.

• If you miss a dose of azathioprine, take it as soon as you remember. If it is near the time for the next dose, skip the missed dose and resume your regular dosing schedule. Call your transplant coordinatorif you have missed a dose.

• Azathioprine may be discontinued after several months if you have not had any rejection and your liver is working well. You may only need one medication to control rejection by this time.

• Azathioprine interacts with a medication called Allopurinol, a drug used to treat gout. Call your transplant coordinator if you are diagnosed with gout or if aphysician, other than your transplant doctor, has prescribed this medication for you.

• If you are planning to becomepregnant, discuss the use of azathioprine with your transplant physician and obstetrician-gynecologist.

Mycophenolate mofetil (Cellcept®)

Purpose: Mycophenolate is used to helpprevent or treat rejection in organ transplantrecipients. It is usually given withtacrolimus (Prograf®), cyclosporine(Neoral®), and/or prednisone.

Dose: Mycophenolate is available in250 mg and 500 mg capsules. It is usuallyprescribed once or twice daily (3-4 timesdaily in some centers) and should be givenat about the same time each day.

Side effects: Mycophenolate may lowerthe number of white blood cells in yourbody, the cells that fight infection. It mayalso lower your platelets which help yourblood clot. Other side effects may includenausea, stomach irritation, vomiting, anddiarrhea. Side effects may decrease orresolve with a lower dose.

Additional information:• Do not change the dose of mycophenolate

or take it more or less often than prescribed.• Your dose of mycophenolate may be

increased during an episode of rejection. The dose may be decreased if you have aninfection or if you have problems with side effects.

• Mycophenolate capsules should be swallowed whole and should not be opened. The powder inside the capsule may be harmful if inhaled.

• If you miss a dose of mycophenolate, takeit as soon as you remember. If it is near the time for the next dose, skip the misseddose and resume your regular dosing schedule. Call your transplant coordinatorif you have missed a dose.

• If you are planning to become pregnant, discuss the use of mycophenolate with your transplant physician andobstetrician/gynecologist. Women of childbearing age should use contraceptionwhile on this medication and for 6 weeks after discontinuing mycophenolate.

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Antithymocyte globulin (ATG,Thymoglobulin®, Atgam®)

Purpose: Antithymocyte globulin (ATG) isan immunosuppressant given in sometransplant centers as “pre-treatment”(induction therapy) prior to transplantation.One dose of ATG is given about 4 hoursbefore transplant surgery to reduce yourbody’s immune response and possiblyreduce the risk of rejection. Some transplantcenters also use ATG to treat rejection.

Dose: ATG is available only as anintravenous (IV) solution and isadministered in the hospital.

Side effects: Patients may have fever,chills, or difficulty breathing during theATG infusion. To minimize this “infusionreaction,” patients are usually treated withmethylprednisolone (a type of steroid),acetaminophen (Tylenol®)/paracetamol, anddiphenhydramine (Benadryl®) before andduring the infusion. The infusion may alsobe slowed down to decrease side effects.You will be closely monitored during theinfusion to watch for any of these sideeffects.

ATG can increase the risk of viral infections,so you may also receive preventative dosesof some antiviral medications. Other sideeffects include a low white count, lowplatelets, pain, headache, abdominal pain,diarrhea, high blood pressure, nausea,swelling of the hands and feet, an increasedheart rate, low blood pressure and anincreased level of potassium in the blood.

OKT3 (Orthoclone®, muromonab-CD3)

Purpose: OKT3 is an immunosuppressantthat is sometimes used to treat moderate tosevere rejection

Dose: OKT3 is given through an IV once aday for 5 to 14 days.

Side effects: Some patients have a reactionto the first or second dose of OKT3.Methylprednisolone (an IV steroid) is givenbefore the first and second doses of OKT3to decrease these reactions. After the firstdose, patients may react with low bloodpressure, a high heart rate, fever, and flu-likesymptoms. Patients may also have areaction with wheezing, difficulty breathing,and fluid in the lungs (pulmonary edema).Patients are monitored closely during thisperiod. In some transplant centers, patientsare monitored in the Intensive Care Unit(ICU) for 24 hours after the first dose.

Other side effects may include high bloodpressure, tremor, seizures, rash, itching,diarrhea, nausea, vomiting, joint pain,sensitivity to light (photophobia), andkidney dysfunction.

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Anti-Infective Medications

Trimethoprim/sulfamethoxazole(TMP-SMX, Bactrim®, Septra®)

Purpose: This medication is used intransplant patients to prevent or treat a typeof pneumonia called Pneumocystis cariniipneumonia (PCP).

Dose: To prevent PCP, patients areprescribed Bactrim/Septra three times aweek, usually on Monday, Wednesday, andFriday. The adult dose is usually 80 mg, orone single-strength tablet. Bactrim/Septrais available as a tablet or liquid.

Side effects: Patients who are allergic tosulfa drugs may have an allergic reaction toBactrim/Septra and may develop a rash,itching, and hives. If you are allergic, yourtransplant doctor will prescribe anothermedication to prevent PCP.

Other side effects may include nausea,vomiting, diarrhea, mouth ulcers, anemia, alow white blood cell count, or a low plateletcount. Bactrim may also cause an increasein the liver and kidney function tests.

Ganciclovir (Cytovene®)Valganciclovir (Valcyte®)

Purpose: Ganciclovir and valganciclovirare antiviral medications used to prevent ortreat cytomegalovirus (CMV) and herpessimplex infections (HSV). Ganciclovir isalso used to treat Epstein Barr Virus (EBV)infections.

Dose: Ganciclovir is usually given twicedaily for 14 days through an IV to treat anactive CMV infection. In some cases, itmay be given longer until the virus resolves.Some transplant centers give a preventativecourse of therapy for 14 days followingtransplantation, particularly if the patient isat risk for developing CMV. An oral tabletform (valganciclovir, Valcyte) is alsoavailable and may be prescribed daily for3-6 months after transplant to prevent CMVin patients who are at risk for the virus.Valcyte is available as a 450 mg tablet.

Side effects: Side effects may include:nausea, vomiting, headaches, pancreatitis,irritation from the IV infusion, confusion,and seizures. Ganciclovir can affect thewhite blood cell and platelet counts in theblood, but this usually resolves by decreasingthe dose or by stopping the medication.Ganciclovir is eliminated by the kidneys, sopatients with kidney dysfunction receive alower dose. Animal studies have shownthat ganciclovir affects fertility and sperm

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production. It is recommended that maleand female transplant patients receivingganciclovir use contraceptive precautionsduring ganciclovir therapy and for at least90 days after discontinuing the medication.Breastfeeding should be avoided during thisperiod as well.

Additional information:• The first few doses of IV ganciclovir are

usually given in the hospital, but most patients are able to finish treatment at home.

• Since ganciclovir is eliminated by thekidneys, drink plenty of fluids while you are receiving this medication.

• If you are taking valganciclovir (Valcyte®),swallow the tablet whole and take with food. It is recommended that patients take 2-3 liters of fluid daily (unless fluid restricted) while receiving valganciclovir.

• Avoid handling crushed or broken tablets.Wash the affected area thoroughly if thereis contact with the powder.

• There is an increased risk of infection while on ganciclovir and valganciclovir therapy. Call your coordinator for any fever, chills, unhealed sores, or white plaques in your mouth.

Acyclovir(Zovirax®)

Purpose: Acyclovir is an antiviral medicationused in the treatment of herpes simplexinfections (HSV-1, HSV-2) and varicella-zosterinfections (chickenpox, shingles).Acyclovir will help decrease pain from theherpes lesions and also help them heal.

Dose: The dose varies according to thetype of infection and if used to prevent ortreat herpes simplex. The IV form may beused at first, and then changed to oraltablets (400 mg or 800 mg) or capsules(200 mg).

Side effects: The most common side effectsare headache, tiredness, dizziness, seizures,pain, insomnia, fever, rash, nausea, vomiting,diarrhea, elevated liver enzymes, muscleaches, and kidney dysfunction.

Additional information: If you have herpes, acyclovir will not preventyou from spreading herpes to others.Condoms may help prevent the spread ofgenital herpes. Sex should be avoided whenthere are any herpes symptoms or activelesions.

CytoGam®

(Cytomegalovirus Immune Globulin,CMV-IGIV)

Purpose: Cytogam is an immune globulinused to treat CMV and EBV disease inpatients who are immunosuppressed. Itprovides antibodies against CMV.

Dose: Cytogam is given through an IVonly. The dose and frequency varydepending on different transplant centerprotocols. It can be given to treat an activeinfection or to help prevent infection.

Side effects: The most common sideeffects are flushing, sweating, musclecramps, back pain, nausea, vomiting,wheezing, chills, and fever.

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Antifungal Agents

Nystatin (Mycostatin®) and Clotrimazole (Lotrimin®, Mycelex®)

P u r p o s e : When you are takinganti-rejection medications, particularlyprednisone, there is a greater risk for gettingan infection from fungus. This infectionusually develops in the mouth and throat,vaginal area, or on the skin.

Dose: An antifungal is prescribed to treatfungus at the site of the infection. Nystatin,a liquid antifungal, is prescribed if a patienthas fungus or thrush in the mouth. Thedose is usually 5 cc swished and swallowed2 to 4 times a day. Sometimes a lozenge(Mycelex®) is prescribed to be dissolved inthe mouth. Vaginal creams, suppositories,and ointments are also available for vaginalor skin infections.

Side effects: Side effects are uncommon,but may include nausea, vomiting, anddiarrhea. Side effects of clotrimazole alsoinclude irritation, a stinging sensation, andincreased liver function tests.

Additional information:• The oral liquid should be swished and

held in the mouth for as long as possible before swallowing.

• Patients should not eat or drink for about 15-20 minutes after taking the liquid or lozenge.

• The clotrimazole lozenge should bedissolved slowly in the mouth.

Antacids and Acid Inhibitors

Famotidine (Pepcid®)Cimetidine (Tagamet®)Ranitidine (Zantac®)Omeprazole (Prilosec®)Pantoprazole (Protonix®)Lonesprazole (Prevacid®)Sucralfate (Carafate®)Mylanta®, Tums®, Rolaids®, Maalox®, Di-Gel®

Purpose: Following transplantation,patients are at risk for developing stomachirritation and ulcers. This can be caused bysteroids and also stress (stress gastritis)which may increase the amount of acid inyour stomach. You may be prescribed 1 or2 of these antacids after transplant.

Dose: The dose varies according to themedication prescribed. Some medicationscoat stomach ulcers while others inhibit theamount of acid that is being released in thestomach.

Side effects: Most patients are able to takethese medicines without any problems. The most common side effects of eachmedication include:

famotidine: headache, heart palpitations, high blood pressure, dizziness, weakness, diarrhea

cimetidine: headache, low blood pressure, low heart rate, dizziness, confusion

ranitidine: headache, low or high heart rate,dizziness

omeprozole: headache, diarrhea, nausea,

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vomiting, abdominal painlonesprazole: headache, diarrhea, nausea,

vomiting, abdominal painsulcralfate: dizziness, sleepiness, vertigo,

rash, itching, constipationantacids: side effects vary according to the

minerals or electrolytes in the medication.• antacids containing sodium — fluid retention• antacids containing aluminum —

confusion, constipation• antacids containing magnesium — diarrhea

Additional information:• Antacids may increase or decrease the

absorption of many medications. Antacids should be taken 1-2 hours away from other medications.

• Omeprazole (Prilosec®), lansoprazole (Prevacid®) and pantoprazole (Protonix®) capsules should be swallowed whole, not chewed.

• Sucralfate (Carafate®) should be taken before meals or on an empty stomach. It should be given 2 hours away from tacrolimus or cyclosporine.

Medications for ElectrolyteImbalances:

Magnesium (Magnesium Oxide, Magnesium Gluconate)Fludrocortisone (Florinef®)Sodium Citrate, Citric Acid (Bicitra®)Neutra-Phos

Purpose: Sometimes medications cancause imbalances in the body’s electrolytes, the substances needed by your

body to maintain fluid balance and manyother functions. Sodium, potassium, chloride,magnesium, calcium, and phosphorus aresome of the electrolytes found in your body.When electrolytes are higher or lower thanthe normal range, medications such as theones listed above are used to correct thelevels.

Magnesium Oxide (Mag-Ox 400) orMagnesium Gluconate (Magonate®): usedto treat a low magnesium level. Side effectsof magnesium supplements include diarrhea,abdominal cramping, muscle weakness, a highmagnesium level, and low blood pressure.

Fludrocortinsone (Florinef®): used to treata high potassium level. Side effects includehigh blood pressure, swelling of the handsand feet, headache, rash, and low potassium.

Sodium Citrate, Citric Acid (Bicitra®):used to treat low CO2 levels, often resultingfrom diarrhea. Side effects include swellingof the hands and feet, increased gas,abdominal distention, and low levels ofsodium, potassium and/or calcium.

Neutra-Phos®: a phosphorus supplement.Side effects include low blood pressure, ahigh phosphorus level, nausea, vomiting,high potassium levels, and diarrhea.

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Blood Pressure Medicines

Nifedipine (Procardia®)Isradapine (DynaCirc®)Amlodipine (Norvasc®)Atenolol (Tenormin®)Labetalol (Normodyne®)Enalapril (Vasotec®)

Purpose: Patients may develop high bloodpressure after liver transplantation as a sideeffect of medications, particularlyimmunosuppressants. High blood pressurecan also be a symptom of kidney dysfunction.Your transplant doctor will prescribe bloodpressure medications to control high bloodpressure.

Dose: Blood pressure medications may beprescribed 1 to 4 times daily, or when thepatient’s blood pressure is above a certainrange. A variety of blood pressuremedications are available and your doctor willchoose the medication or the combinationof medications that are best for you.

Over the Counter (OTC)Medications After liver transplant, patients may havecomplaints about common “every day”problems. There are some over-the-counter(OTC) medications that may be taken totreat these. However, these recommendationsvary by physician and transplant center. Pleasecheck with your transplant center for the OTCmedications that you are permitted to use.

DiarrheaDiarrhea may occur after transplant as aside effect of some commonly prescribedmedications such as magnesium oxide(Mag-Ox) or magnesium gluconate(Magonate®). Although diarrhea may alsoresult from certain foods that you do nottolerate very well, it may also be a symptomof a viral or bacterial infection. If you havediarrhea for more than 48 hours or if youdevelop fever with diarrhea, contact yourtransplant coordinator. Diarrhea may affectthe absorption of your medications andresult in lower than desired levels ofimmunosuppression. After evaluating yoursymptoms, your transplant team mayrecommend an OTC medication.

ConstipationIf you are constipated, you may get somerelief by increasing your fluid intake as wellas the fiber content of your diet. Eat plentyof bran, whole grains, fresh fruits, andvegetables. Gradually increase your activitylevel. Medications and fiber supplementsthat may help resolve constipation includeMetamucil®, Fiber-Con®, Senekot®, and Colace®.If constipation continues to be a problem,contact your transplant coordinator.

Headache and Muscle AchesIf you have a headache or muscle aches thatdo not occur with fever, acetaminophen(Tylenol®) may be taken. Check with yourtransplant coordinator for the recommendeddose of acetaminophen and the frequency ofdosing. Most centers advise 1-2 tabletsevery 4-6 hours, not to exceed 3 doses perday. If your headaches worsen and/orbecome more frequent, or if your headache

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presents with fever or vomiting, contactyour transplant coordinator. Most transplantcenters recommend that patients do not takeibuprofen products such as Motrin®, Advil®,Nuprin®, or Midol®, and Naproxen productssuch as Naprosyn® or Aleve®. Ibuprofencan cause kidney dysfunction and alsostomach irritation.

Upper Respiratory Infections andSeasonal AllergiesAlthough OTC medications may be taken forcold symptoms, these symptoms, particularlywhen occurring with fever, should be reportedto your coordinator. If it is determined thatyou have a community-acquired cold, askyour coordinator what cold remedy may betaken. Most OTC cold medications containan antihistamine, acetaminophen and/or acough suppressant. However, some coldremedies contain alcohol. Alcohol-containingcold remedies should be avoided.

If you require an OTC antihistamine torelieve and treat the symptoms of a seasonalallergy, contact your coordinator for yourcenter’s specific recommendations.

Nutritional SupplementsPatients are often advised to take a dailymultivitamin, vitamin supplements, and/ormineral supplements after transplantation,particularly if their nutritional status waspoor before transplant or if they have had adifficult recovery with complicationsfollowing surgery. Your dietician willadvise you about how to maximize yournutrition following transplant. Check withyour transplant coordinator before takingany nutritional supplement that has not beenprescribed for you.

Herbal ProductsMost t ransplant centers s t ronglyrecommend that transplant recipients avoidtaking any type of herbal products/remediesor teas. In the United States, these productsare classified as dietary supplements by theFood and Drug Administration (FDA), so themanufacturers do not have to test them foreffectiveness, side effects, drug interactions,or safety, and doses are not regulated.

St. John’s Wort is a well-known herbalsupplement that is used to treat depression.This herb increases the metabolism, orbreakdown, of medications which intransplant patients, can decrease cyclosporineand tacrolimus levels. Decreased levelsplace the patient at risk for rejection.

Grapefruit juice is sold as an herbalsupplement called paradisapfel, pomelo, andtoronja. A substance found in grapefruit andgrapefruit juice decreases the metabolism ofsome medications. Patients who are takingcyclosporine or tacrolimus may develop avery high level of their medication ifgrapefruit juice is taken anytime of day.Any form of grapefruit, including the herbalsupplement, should be avoided if you areprescribed tacrolimus or cyclosporine.

Before taking any herbal supplement orremedy, you should check with yourtransplant team for the best advice. Do nottake any herbal supplements without tellingyour physician or transplant coordinator.These products can interact with yourmedications and lead to problems with yourliver transplant.

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Fever

What is fever?Fever, or a high body temperature, is asymptom of the body’s reaction to anorganism not considered as “self” by theimmune system. Fever can be caused byminor illnesses as well as serious infectionsand is usually defined as a body temperaturegreater than 101 degrees Fahrenheit (F) or38.4 degrees Celsius (C).

Why would I get a fever?Healthy adults may have an occasionalfever throughout the year due to colds,influenzas, or other community-acquiredinfections. However, since your immunesystem is now suppressed so that thetransplanted liver will not be rejected,episodes of infection with fever may bemore common, particularly when you aremore highly immunosuppressed during the

first 3-6 months after transplant or duringperiods of treatment for rejection. A hightemperature can also be a symptom of rejection.

What should I do if I have a fever?It is very important to call your doctorand/or transplant coordinator if you have atemperature of 101°F (38.4°C) or greater.Since the temperature range may vary bycenter, check with your transplant coordinatorabout when to call for fever. Be sure thatyou have a thermometer when you leave thehospital and that you are able to read it.Digital thermometers are also available ifyou have trouble reading a glass thermometer.

If you have a fever, call your transplantcoordinator or physician as instructed atdischarge. Although acetaminophen(Tylenol®)/paracetamol may be used to treatfever after transplant, do not take any fevermedication until you have talked to yourcoordinator.

If you are instructed to take acetaminophen(Tylenol®)/paracetamol, take the recommendeddose at the time interval prescribed. Youmay also be instructed to have blood testsdrawn or to come to Transplant Clinic oryour physician’s office for an examination.

Ibuprofen (Motrin®, Advil®) is anothermedication used to treat fever, but shouldnot be taken by liver transplant recipientssince it can affect liver and kidney function.It can also cause stomach irritation and ulcers.

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My responsibilities for taking careof fever:• I must have a working thermometer that

my caregiver or I can read before I leave the hospital.

• I should have a supply of acetaminophen (Tylenol®)/paracetamol on hand to take forfever if I am instructed to do so.

• After I am discharged from the hospital, I should take my temperature every _________________________________.

• After _________weeks, I should take my temperature only if I feel ill or think I might have a fever.

• I should call my transplant coordinator or physician if my temperature is greater than ______ °F or ______ °C.

• The dose of acetaminophen/paracetamol that I should take if instructed to do so by my physician is:________mg or ____ tablets every _______ hours as needed for fever greater than ________. I should not take more than _____ doses in a 24 hour period.

• I should not take any ibuprofen products (Motrin®, Advil®) unless instructed to do soby my physician.

Rejection

What is rejection?Your body’s immune system is designed toseek and destroy any foreign object that itfinds in your body, such as a cold virus, aflu virus, or a transplanted organ! Theprocess of destroying the foreign object —the transplanted organ — is called rejection.It is very common for your body’s immunesystem to try to reject the liver within thefirst month after transplant, usually at 7-10days. Most patients experience at least onemild to moderate rejection episode duringthis time. This is a normal reactionbetween your body’s immune system andthe transplanted liver and shows that yourimmune system is working. However, inorder to protect the transplanted liver andmaintain good function of your liver, yourimmune system will need to be suppresseda little more so that the rejection resolves.

Rejection may be called “acute”, meaningthat it develops quickly as your immunesystem attempts to destroy the liver cells. If the rejection process continues slowlyover time, it is called chronic rejection.Chronic rejection can be more difficult totreat than acute rejection because of themore permanent changes in the liver tissue.

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How do I know I am rejecting myliver?Any injury to the liver can cause the releaseof normal liver proteins, or enzymes, intothe bloodstream. An injury could be causedby rejection, infection, or drug toxicities.Measuring these enzymes, called the liverfunction tests (LFTs), regularly and watchingthe pattern of the results can help your doctordecide what is happening to your liver.

Liver rejection is usually diagnosed bylooking at the liver function tests. Yourphysician may suspect that you have rejectionif any of these numbers are increased fromthe normal range. (Lab values are USmeasurements and may vary slightly by transplantcenter.)

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Rejection

Test

ALTalanine aminotransferase

ASTaspartate aminotransferase

Total Bilirubin

GGTPGamma-glutamyl transferase

APAlkaline phophatase

Normal Adult Range

1-30 U/L

0-35 U/L

0.1 - 1.2 mg/dl

males 11-50 U/Lfemales 7-32 U/L

30-120 U/L

Indication

↑ rejection

↑ rejection

↑ rejection, bile duct obstruction

↑ rejection, bile duct obstruction

↑ bile duct obstruction↓ malnutrition

What are the symptoms ofrejection?While you are in the hospital, the transplantteam will be monitoring your liver functiontests (LFTs) daily to watch for rejection. Ifyou reject your liver during this time, youmay not have any noticeable symptomsbecause rejection was diagnosed earlythrough your blood test results.

After you leave the hospital, your bloodtests will be monitored less frequently. Ifrejection occurs, you may experience somemild symptoms, although some patients

may continue to feel fine for a while. Themost common early symptoms include:• Fever/high temperature over 101°F or

38.4°C• flu-like symptoms such as chills, nausea,

vomiting, diarrhea, headaches, dizziness, body aches, tiredness

• abdominal pain or tenderness• increased LFTs

Later symptoms may be similar to problemsyou had before your transplant and mayinclude:• yellowing of the skin and eyes (jaundice)• dark, tea-colored urine

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• light, clay-colored stools• confusion• increased fatigue• abdominal swelling (ascites)

How is rejection treated?Rejection does not mean that you will loseyour liver, but it is very important to begintreatment as soon as possible to avoid furthercomplications. Rejection can usually betreated successfully if it is detected early.

Rejection is usually treated by increasingthe doses of your anti-rejection medicationsor by adding or combining differentanti-rejection medications. Your transplantteam may want to perform a liver biopsy toconfirm that your symptoms are caused byrejection before they make any changes toyour medications. You may be prescribedan increased dose of prednisone/prednisolonedaily or given solumedrol, the IV form ofprednisone. Sometimes another anti-rejectionmedicine, such as mycophenolate mofetil,sirolimus, or azathioprine may be added.

When your liver recovers, your doses ofthese additional anti-rejection medicationsmay be decreased or discontinued. The levelof your primary anti-rejection medication,usually tacrolimus or cyclosporine, may bereduced. Your transplant team’s goal is tohave you on the lowest amount ofimmunosuppression possible so that you donot reject your liver, have good liver function,and have minimal risk of infection andother side effects.

What is a liver biopsy?Although liver function tests and yoursymptoms help diagnose rejection, a liverbiopsy confirms that the liver is being

rejected. A small piece of liver tissue isexamined under a microscope for signs ofrejection

Biopsies are usually done as short-stayprocedures at the hospital. To prepare youfor the biopsy, an area on your right sidewill be cleaned with an antiseptic solution,such as betadine. You will be given aninjection of a local anesthetic, or numbingmedicine, into the area where the biopsywill be done. Sometimes an ultrasound isdone to determine the best place to insertthe biopsy needle. After the area is numb,the physician will advance a special coredneedle into the liver to take out a smallcylindrical piece of tissue. The actualbiopsy only takes a few seconds. The pieceof liver tissue may look like a small pieceof string. It is placed into a special solution,and then taken to the pathology lab to beprocessed and viewed under the microscope.Your biopsy results may be ready later thatday, or you may be asked to return to clinicto discuss your biopsy results or anytreatment that may be necessary.

Following a liver biopsy, you will need tolay on your right side for at least 1 hour,and you must rest in bed for 4-6 hours. Yournurse will take your vital signs every 15-30minutes during this time to watch for a highheart rate or respiratory rate and a lowblood pressure. You may also have a chestX-ray and some blood tests before youleave to be sure that there is no bleedinginternally from the biopsy site. Mostpatients feel fine after the biopsy.Sometimes the biopsy site may be a littletender, like a bruise, for a day or two.

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Rejection

Will I always have to be concernedabout rejecting my liver?The risk of rejection decreases over time,but can occur at any time. Taking goodcare of yourself, taking your medications asprescribed, and having your blood testsdone as requested will help decrease yourrisk of rejection. Good communicationwith your transplant team and followingyour care routine are key factors for asuccessful outcome after transplant. Rejectioncan be successfully treated due to advancesin immunosuppression and combinations ofanti-rejection medications.

My responsibilities for monitoring thesymptoms of rejection and decreasingmy risk for rejection:• know and understand the signs and

symptoms of liver rejection• take all medications as prescribed • make sure I always have a supply of my

medications• stay in regular contact with my transplant

coordinator for any changes in my immunosuppression

• have my blood testing done as instructed• follow-up on my blood test results with

my transplant coordinator• call my transplant coordinator or

physician if I think I am experiencing anysymptoms of rejection

• avoid alcohol, illegal drugs, herbal supplements, and alternative medicines

• maintain good communication with my transplant team

Patients who have had liver transplantsrequire anti-rejection medications, usuallyfor their lifetime, to suppress their immunesystem so that the liver is not rejected bythe body. Since your immune system isinhibited by these medications, transplantrecipients always have an increased risk ofgetting infections. This risk is highest inthe first 3-6 months after transplant or whenhigher levels of immunosuppression areprescribed to treat rejection.

How Can I Decrease My Risk ofInfection?If you are doing well, have good liverfunction, and have not had any episodes ofrejection, your transplant doctor willgradually lower your immunosuppressionlevel over time. This will help minimizeyour risk of infection.

These guidelines may help decrease yourrisk of infection:• Practice good handwashing techniques by

using warm water, soap, and vigorous scrubbing for 1 minute. Be sure to scrub between your fingers as well.

• Wash your hands well before eating and preparing food, and after going to the bathroom.

• Avoid putting your fingers or hands in or near your mouth, particularly if you have not washed your hands recently.

• Encourage any family and friends who arein contact with you to practice goodhandwashing techniques.

• Wash your hands well before caring for any wounds or doing any dressing

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Infection

changes. Report any changes in the wound (increased redness, swelling, or drainage) to your transplant coordinator.

• Avoid close contact with people who haveobvious illnesses such as colds and flu.

• Avoid any “live” vaccines including the chickenpox (varicella) vaccine, MMR (measles, mumps, rubella), and the oral polio vaccine. If for any reason you are told to get one of these immunizations, contact your transplant coordinator.

• Get a tetanus injection as needed if you have a skin wound from an object that could potentially cause an infection such as a piece of wood or a rusty nail.

• Consider getting the influenza vaccine every fall. Your close family contacts should also get this vaccine.

• Take the recommended antibiotics before dental work or any invasive procedures asinstructed by your transplant team.

• Do not share eating utensils, cups, and glasses with others since many viralillnesses are spread through saliva and mucous. Also, do not share razors or toothbrushes.

• Do not handle animal waste. Do not clean bird cages, fish or turtle tanks, or change cat litter.

• Practice safe sex.

What infections are most common?There are 3 types of organisms that causeinfections: bacteria, fungi, and viruses.

Bacterial InfectionsBacterial infections usually occur very earlyafter transplant surgery and may be causedby central vein catheters, infections insidethe abdomen, or wounds. Patients maydevelop pneumonia, particularly if they hadcomplications during or early after surgeryand required a prolonged stay in the

intensive care unit. Urinary tract infectionsmay occur from having a urinary catheter todrain urine. Although rare, abscesses candevelop in the liver if the patient developsclots in the major liver arteries and veins.Another type of bacterial infection ischolangitis, or an infection in the bile ductsof the liver.

If you develop a blood infection, bloodspecimens will be sent to the lab to find outwhat type of bacteria is causing the infection.Your doctor will prescribe a specificantibiotic to treat that bacterial infection.

Fungal InfectionsFungal, or yeast, infections are mostcommon in the first 3 months aftertransplant. These infections usually do notget into the bloodstream. The most commonfungus, Candida, looks like a white plaqueor coating on the tongue and inside themouth. This infection is also called thrush.It may make your mouth tender and soreand you might have difficulty swallowing ifit is coating your throat as well. If thrush isnot treated, it can also infect the esophagus,stomach, and intestines.

Women may get a vaginal infection withcandida. The vaginal area may becomevery itchy and there may also be a thickyellow or white discharge from the vagina.

These types of fungus infections are oftenseen when patients are taking high doses ofprednisone. They usually resolve whentreated with topical medications such asnystatin, lotrimin, or clotrimazole.

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Viral Infections

Cytomegalovirus (CMV) is a commoncommunity-acquired virus and is not aserious illness for most people who arehealthy. However, CMV may be of moreconcern to people who are takingimmunosuppressive medications.

CMV is a common infection that usuallyoccurs within 2-3 months after transplant.Some patients are more at risk for CMVthan others. The patients who are at highestrisk are those who:• are CMV-negative and received a

CMV-positive liver or CMV-positive blood products

• received high levels of immunosuppression

• received OKT3 to treat rejection

Because CMV is such a common infection,transplant centers usually have treatments toprevent this infection, particularly inpatients who are considered to be at highrisk for getting the virus. Most treatmentplans to prevent CMV include ganciclovir.Some centers continue preventative treatmentfor up to 3 months after transplant. Usingthese treatments to prevent CMV hasdecreased the rate of this infection.

Symptoms of CMV include fever, a lowwhite blood cell count and a low plateletcount. A CMV infection in the lungs cancause fever, coughing, shortness of breath,or wheezing. If CMV develops in thegastrointestinal (GI) tract, it causesdiarrhea, nausea, vomiting, abdominal pain,and/or bloody stools. If CMV infects yourliver, your LFTs may increase and you maythink you have rejection. A liver biopsywill confirm if the diagnosis is rejection or

a CMV infection. CMV is suspected if youhave fever and any of these symptoms, butis confirmed through a special blood test.

The medical management of CMV infectionafter liver transplant varies by transplantcenter; however, the treatment usuallyincludes a 14 day course of intravenousganciclovir followed by 6-10 weeks of oralvalganciclovir (Valcyte®).

Additionally, immunosuppression may belowered during the infection so that theimmune system helps fight the virus.

Epstein-Barr Virus (EBV) and Post-Transplant LymphoproliferativeDisorders (PTLD)

EBV is a very common virus and mostadults have been exposed to it at some pointin their lives. In patients who areimmunosuppressed, EBV can occur at anytime after transplant, but most commonlyoccurs within the first year. This virus rangesfrom “mono” (infectious mononucleosis)to a more serious disease, PTLD, whichcan cause tumors or a lymphoma. The viruscauses some cells to multiply or proliferateat a higher rate than usual. This can lead tothe development of a lymphoma.

Some transplant centers monitor patientswho are at high risk of developingEBV-related complications. Since beingimmunosuppressed has caused the virus todevelop, the best treatment is to lower orstop immunosuppression until the virusresolves. Patients are monitored veryclosely during this time so that if they beginto reject, immunosuppression can beresumed or increased. Intravenousmedications to treat the virus are also given.

Taking Care of Yourself and Your Liver

Liver Handbook

ClinicAfter discharge from the hospital, you willbe seen regularly as an outpatient at yourcenter's Transplant Clinic. Most patientsare seen 1-2 times every week for 2-4weeks, then less frequently as they improveand return home. Long-term patients whohave good liver function may be seen onlyonce a year. Most transplant centers willmanage the patient's immunosuppressionfor the rest of their lives, with the patient'slocal physician managing routine care.

Clinic routines vary greatly by center. It maybe helpful for you to discuss the followingquestions with your coordinator.

When should I come to Clinic?My first clinic appointment is:________________________________Clinic is held every:________________________________

Where is Clinic?Clinic is located: ________________________________________________________________________________________________________________________________

What should I bring to Clinic?❑ Medication list or record❑ Vital signs record (if requested)❑ Blood sugar records (if you are a diabetic)❑ Your liver handbook❑ A family member or caregiver❑ Any medications that need to be taken

during clinic times❑ ________________________________❑ ________________________________❑ ________________________________❑ ________________________________

What is the usual Clinic routine? • Registration• Blood tests• Waiting room• Examination by my transplant doctor with

a review of my blood test results and medications

• Meet with my coordinator to:✓ review care✓ answer my questions or concerns✓ be aware of and understand any

changes in my care or medications✓ get prescriptions or have any new

meds or med changes ordered• Schedule or report for any additional

procedures (biopsy, X-ray, etc.)• Meet with my Social Worker if needed• Attend support group meetings if

scheduled

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Liver Handbook

Vital SignsWhen you leave the hospital, you may beasked to regularly check your temperature,pulse, and blood pressure — called your“vital signs”. Understanding what eachvital sign means and what your normalrange is for each vital sign is important.

If you experience difficulty breathing or anychest pain or pressure, call 911 (EmergencyServices) and ask to be taken to the nearestEmergency Room. Never try to driveyourself or have a caregiver take you to thehospital if you have these symptoms. Youmay require care as soon as possible andyour caregiver may not be able to help youwhile driving. You should always call 911.

Blood PressureBlood pressure is the measure of force inyour arteries. It is a measure of two typesof pressure, the systolic and the diastolic.The blood pressure measurement is writtenas 120/80. The systolic blood pressure isthe “top number” of blood pressuremeasurement and measures the force of themuscle contraction of the heart as blood ispumped out of the chambers of the heart.The diastolic blood pressure is the “bottomnumber” and is when the heart muscle is atrest between beats, expanding and fillingwith blood.

If you are asked to record your bloodpressure, you and your caregiver will betaught how to take your blood pressurebefore you leave the hospital. Your centerwill provide you with a cuff or instruct youon where you may purchase one. Cuffsmay be manual (you pump them yourself)or digital (automatic). If you have a digital

cuff, be sure to measure how accurate it iswith a cuff used by your nurse or in theclinic. Accuracy varies in some of thedigital pumps.

High blood pressure (hypertension) mayoccur early on after liver transplant and isusually related to the side effects of somemedications or kidney dysfunction. It canusually be managed well with bloodpressure medications and/or someadjustments in your diet, such as lowsodium diets. A common symptom of highblood pressure is headache.

✓ My blood pressure may range from _______/_______to _______/_______.

✓ I should take my BP ________ times every day at _________________ and before I take any blood pressure medicine.

✓ I should call my coordinator if my BP isgreater than _____/______.

✓ I should record my BP on the Vital Signs Form (see page 59).

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Liver Handbook

TemperatureNormal body temperature is 98.6° F or37° C. If your temperature is rising, youmay feel hot or cold, achy, and/or developchills or sweat. Fever is an importantsymptom and can occur with rejection orinfections (see Fever, page 24).

✓ I should take my temperature ______ times daily or whenever I feel ill.

✓ I should call my transplant coordinator or physician if my temperature is greaterthan ______ ° F or ______ ° C.

✓ The dose of acetaminophen/paracetamol that I should take if instructed to do so by my physician is:________mg or ____ tablets every _______ hours as needed for fever greater than ________.

✓ I should not take more than _____ dosesin a 24 hour period.

✓ I should not take any ibuprofen products(Motrin®, Advil®) unless instructed to do so by my physician.

PulseYour pulse is created by your heart beat.When you take your pulse, you are feelingthe pressure of your blood in an artery fromthe beating of your heart. The pulse rate isthe number of times your heart beats in aminute, for example 72 beats per minute (bpm).

Your pulse can be felt in your wrist or neck.You can also listen to your pulse with astethoscope over your heart. You may be

advised to take your pulse when you takeyour blood pressure or if you feel like yourheart is beating too fast or “racing”. Youmay also be asked to take your pulse if youare on certain heart medications that affectyour pulse rate.

✓ My normal pulse when resting is: _____________________.

✓ My normal pulse when active is: _____________________.

✓ I should call my coordinator if my pulse is greater than ______ or less than______.

WeightYou may be asked to weigh yourself dailyor 2-3 times a week to monitor for anylosses or gains. Your weight will also bemonitored at every clinic visit. You shouldcheck your weight as often as instructed ona bathroom scale at the same time eachmorning. After you go to the bathroom, butbefore you eat breakfast is a good time.Record your weight on the Vital Signs Form(page 59). Gaining or losing weight,particularly if this happens suddenly, can bea sign of problems in your recovery. Asudden weight gain could mean that you areretaining fluids. This could be a side effectof medications or a sign that your kidneysare not working well. A sudden loss couldmean you are dehydrated which can beharmful to your heart and kidneys. Callyour transplant coordinator with any suddenweight changes.

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Vital Signs

Liver Handbook

Blood TestsMonitoring blood tests is another way yourtransplant team follows your recovery andchecks how your transplanted liver andother important body systems arefunctioning. Your medications may beadjusted based on your test results.

Blood tests are done frequently aftertransplant while you are in the hospital tomonitor your recovery and progress. Asyou improve, your blood tests will bechecked less often. Your blood tests maybe repeated more frequently if you haverejection, infections, or other complications.When you return home, you may be askedto have your blood tests done locally.

Depending on your transplant center, it maybe your responsibility to arrange this. Yourcoordinator will advise you on where to goand how to have your results sent to thetransplant center. You may also want tokeep a record of your results (page 37).

✓ My blood tests should be checked every: ________________________________

✓ I will get this done at: ________________________________

✓ Results should be faxed to:________________________________

✓ Any special instructions:________________________________________________________________

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Lab values of blood tests vary by center. Please adjust the normal ranges in the tables below toyour center's guidelines. If your lab results are out of the normal range, your physician ortransplant coordinator will discuss these with you. Some abnormal lab values may be acceptable as you recover from transplant or a related complication and should improve over time. (Lab values are US measurements.)

Test

Bili

Alk Phos

ALT

AST

GGTP

Alb

TP

Name

Total bilirubin

Alkaline phosphatase

Alanine aminotransferase

Aspartate aminotransferase

Gamma-glutamyltranspeptidase

Albumin (serum)

Total protein

Result

↑ Bile duct obstruction↑ May be a sign of rejection or infection

↑ Bile duct obstruction↓ Malnutrition

↑ Liver injury, rejection

↑ Liver injury, rejection

↑ Liver injury, rejection, bile duct obstruction

↓ Malnutrition

↓ Malnutrition, chronic liver dysfunction

Normal Range(US Values)

0.1 - 1.2 mg/dl

30 - 120 U/L

1-30 U/L

0-35 U/L

Males: 11-50 U/LFemales:7-32 U/L

3.5-5. g/dl

6-8.4 g/dl

Tests that Monitor Liver FunctionYour liver function tests (LFTs) will be monitored to check how well your new liver is workingand to watch for any signs of rejection, infection, and/or blockage of the bile ducts.

Liver Handbook

Tests that MonitorKidney Functionand ElectrolytesThese tests are important to follow to besure your kidneys are functioning properlyand that the fluid balance in your body iscorrect. Anti-rejection medications can

sometimes effect how well your kidneyswork, so it is important that kidney functiontests are also checked regularly. If yourkidneys are not working well, you may alsohave abnormal levels of your electrolytes.Your physician will treat any problems withadjustments in your immunosuppressionand/or other medications to treat electrolyteimbalances.

35

Test

BUN

Cr

Na

K+

Mg++

Glu

Ca++

Name

Blood urea nitrogen

Creatinine

Sodium

Potassium

Magnesium

Glucose

Calcium (total)

Result

↑ Kidney dysfunction, dehydration, highprotein diet, side effect of some anti-rejection medications

↓ Liver disease; over-hydration

↑ Kidney dysfunction, side effect of some medications, dehydration

↓ Muscle wasting

↓ Side effect of diuretics; kidney dysfunction

↑ Side effect of medications; kidney dysfunction

↓ Side effect of diuretics; decreased intake, vomiting

↑ Kidney dysfunction↓ Diarrhea; side effect of medications

↑ Diabetes, problems with the pancreas, side effect of some medications

↓ Occurs in liver disease or with thyroid problems

↑ High intake of calcium often caused by taking too many antacids; bone disorders, thyroid problems

↓ Kidney dysfunction, over-hydration, problems with the pancreas, severe malnutrition

Normal Range(US Values)

8-25 mg/dl

Males: 0.6 - 1.3mg/dlFemales: 0.5-1.2mg/dl

135-145 mEq/L

3.5-5.0 mEq/L

1.8-3.0 mg/dl

70-115 mg/dl(fasting)

8.5-10.5 mg/dl

Liver Handbook

Your Blood Count(CBC)The Complete Blood Count (CBC) will bemonitored with your routine labs to checkfor infection, the effects of anti-rejectiondrugs, anemia, and to make sure you havethe normal range of each type of blood cell.

36

Test

WBC

Hct

Hgb

Plt

Name

White blood cellcount

Hematocrit

Hemoglobin

Platelets

Result

Cells that fight infection and are alsoinvolved in the rejection process.↑ Bacterial and viral infections↓ Side effect of some medications, stress

Measures the percentage of oxygen-containing RBCs. ↑ May cause blood clotting↓ Sign of anemia

The oxygen-containing part of the RBC.↑ May indicate dehydration or a blood

disorder↓ Anemia

Component of blood that helps stopbleeding.↑ Can make your blood “thick” and lead

to clotting↓ May be a sign of liver disease,

bleeding, anemia

Normal Range(US Values)

4.5-11 WBC/mm3x 1000

Males: 40-54%Female: 37-47%

Males: 14-18 g/dlFemale: 12-16 g/dl

150,000 - 350,000

Lab Tests

Liver H

andbook

37

DA

TE

Prograf level

Bili

ALT

AST

GG

TP

Alk Phos

BU

N

Creat

Sodium

Potassium

Magnesium

Calcium

Glucose

WB

C

Hem

atocrit

Platelets

Liver Handbook

NutritionGood nutrition is an important part of yourcomplete recovery following liver transplant.As you recover, your body has increasednutritional needs for wound healing, toregain any weight you lost due to liverdisease and the stress of surgery, and to helpyour body fight infection. After livertransplant, patients need a diet high incalories and protein to rebuild muscle tissueand restore protein levels. Dietaryrequirements are different for everyone, soyour dietician will meet with you aftertransplant to discuss your specific nutritionaland caloric needs and any dietaryrestrictions you may have. Most patientswill need to increase calories as well ascalcium and protein intake. Some patientsmay have to limit intake of sugar, salt(sodium), or potassium-containing foods.

Transplant recipients may also be at greaterrisk for bone fractures due to poor nutritionbefore transplant, chronic liver disease, orlong-term use of steroids (prednisone). Abone density test may be ordered to checkfor calcium loss and weakness in yourbones. Your physician and dietician mayrecommend that you take calciumsupplements and increase your dietaryintake of calcium. Good sources of calciuminclude: yogurt, low fat milk products(ricotta cheese, skim or low-fat milk,provolone cheese, mozzarella cheese),sardines, salmon, dark green leafy vegetables, and calcium-fortified orangejuice. Regular exercise will also helpprevent bone weakness.

During the first few weeks after transplantyou may have some trouble eating due toloss of appetite, feeling full or nauseated, oryou may have changes in taste. This is

quite common and will resolve over time asyou recover and your activity increases.While your appetite is low, you might tryeating several small meals a day, snackbetween meals on high calorie and highprotein foods, and/or drink higher calorieliquids such as milk or juice rather thanwater. Your dietician can help you planyour meals and snacks. If you feel full orbloated, try to eat frequent small meals,avoid foods that may cause additional gas,eat foods that are high in carbohydrates andproteins rather than fats, or sip on fluidsbetween meals instead of during meals. Ifyou are nauseated during your recovery,foods high in carbohydrates such as pasta,cereal, bread, pretzels, and fruit may help.Nausea may also be decreased by drinkingginger ale and lemon-lime sodas. Spicy andfatty foods should be avoided if you arenauseated. If you continue to haveproblems with nausea, your physician mayorder a medication to help decrease thisfeeling. If you are experiencing changes intaste, try using seasonings and spices toenhance the flavors of your food.Marinating meat, poultry, or fish can also behelpful. If you continually have a bad taste

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Liver Handbook

in your mouth, drinking cold fluids orsucking on hard candies may also help.

Patients often have high potassium levels intheir blood following liver transplant. Anincreased potassium level (hyperkalemia)could be due to anti-rejection medicationsor kidney dysfunction. High levels ofpotassium may cause the heart to beatirregularly. If your potassium level is high,it will be controlled by a medication calledfludrocortisone (Florinef®) and/or dietarylimits of high-potassium foods. Some highpotassium-containing foods include:apricots, bananas, cantaloupes, dates, driedfruits, figs, honeydew, kiwi, nectarines,oranges, prunes, raisins, artichokes, beans,brussel sprouts, lentils, peas, potatoes,pumpkin, spinach, squash, tomatoes,ketchup, cocoa, coffee, nuts, cereals withfruits and nuts, and salt substitute. Yourdietician will advise you on how manyservings of these foods you may have dailyif your potassium level is high.

While it is important to regain lost weightand to rebuild your protein stores, youshould also be careful not to gain too muchweight once you have returned to yourrecommended weight. Being overweightmay contribute to other health complicationssuch as heart disease and diabetes. Regularlow-impact exercise such as walking orriding a bicycle can be very helpful. Youshould start all activities slowly thengradually increase your activity as yourendurance improves.

The recommended weight range for myheight is: _______lbs to _______ lbs(_____kgs to _____kgs).

Safe Food HandlingSafe food handling is important for everyone.However, you may be at an increased riskof getting a food-born illness since you aretaking anti-rejection medications. Thefollowing guidelines will help decreaseyour risk of getting an infection from food.

• Follow the safety instructions on food packaging.

• Avoid raw or undercooked meat, fish (sushi, oysters), poultry, or eggs.

• Foods should be cooked thoroughly and served hot.

• Always check labels on meats, fish, and dairy products for freshness and “sell by” dates.

• Buy pasteurized milk, cheese, and fruit juices.

• Store foods appropriately. Place foods in the refrigerator or freezer as soon as possible if they require cold storage.

• Wash your hands thoroughly with warm water and soap before and after preparing food and particularly after you touch raw meat, fish, or poultry.

• Wash all surfaces that come in contact with raw meat, fish, or poultry.

• Scrub all raw fruits and vegetables before cooking or eating them.

• Some centers caution patients not to eat food from salad bars due to possible contamination by others or from buffets ifthe food temperature is not hot enough.

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Nutrition

Liver Handbook

ActivityExerciseIt is common to feel tired or weak as yourecover from liver transplant. If you havebeen hospitalized for a long time before orafter your transplant, you may have lostsome muscle mass from prolonged bed rest.You may also find that your sleep pattern isdisturbed. Regular exercise and goodnutrition will help get you back to a normal,active routine and an eventual return toyour home routine, work, or school.

While you are in the hospital, you mayreceive physical therapy to help you regainstrength and increase your activity level.Your physical therapist can help you starta simple exercise routine. Walking for shortperiods several times a week can be thestart of a good exercise routine once youleave the hospital. Regular exercise isimportant for everyone to control weight,improve cardiovascular health, increaseendurance, and even to reduce stress.

For the first 6 months after transplant, youmay be advised to avoid any strenuousactivity, heavy lifting, or more intensiveexercise programs. Check with yourcoordinator and physician for your center'sguidelines. The best activity in the first fewweeks after transplant is walking. Mostcenters recommend that any activities orsports with a high risk of injury likefootball, wrestling, skiing, water skiing, ormotorcycling, should be avoided for at leastone year after transplant although somecenters restrict contact sports indefinitely.

Liver transplant patients may swim inchlorinated pools after all drainage tubesare removed and their incision and wounds

are healed. Patients should avoid smallstanding bodies of water such as ponds orsmall lakes that may contain infectiousorganisms. Patients may swim in oceans orlarge lakes if the water is tested to be safeby the local health department. Public hottubs should be avoided.

Returning to Work or SchoolPatients return to work or school at varioustimes depending on the extent of theirillness before transplant, recovery time,complications, and the type of work that isdone. Most patients are ready to return towork or school within 2-3 months aftertransplant. It is often helpful to return on apart-time basis and increase your hoursslowly as your energy and enduranceimproves. Discuss your return with yourtransplant doctor and coordinator to decidethe time that is best for you based on yourworkplace and responsibilities.

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Liver Handbook

DrivingMost patients can resume driving within 4-6weeks after transplant, but this also dependson your recovery period and medications.Your reflexes and judgment may be affectedfrom a prolonged hospitalization or fromcertain medications, so it is best to discussthis with your transplant doctor andcoordinator before getting behind the wheel.It may be helpful to have another licenseddriver in the car with you for the first fewtimes that you drive after transplant. Youmay also want to practice driving in anopen lot or away from other traffic for thefirst time as you get used to driving again.It is important that you always wear a seatbelt even if you still have an open wound.Padding your abdomen with a towel orsmall pillow will help cushion yourabdomen from the seat belt while providinga safe restraint in case of an accident.

Sexual ActivitySexual activity is an important part ofnormal adult life. Your desire and sexualfunction may have been very limited beforeyour transplant due to your liver diseaseand illness. Both men and women may findas they recover from liver transplant thattheir desire for sexual activity has returned.Most centers advise that patients wait for6-8 weeks before resuming sexual activitybecause of the stress on the abdominalmuscles, but how quickly patients feelready for sex after transplant is differentwith every person. Ask your transplantdoctor or coordinator when it is medicallysafe for you to have sex. Also discuss anyconcerns with your spouse/partner so thathe/she understands your feelings aboutresuming sexual activity.

Sexually Transmitted DiseasesSince transplant recipients areimmunosuppressed, they are at higher risk

for contracting sexually transmitted diseases(STD), particularly if they are not in amonogamous (one partner) relationship. Ifyou are not in a monogamous relationship,it is imperative that latex condoms are usedto decrease the transmission of STDs duringsexual activity.

Practicing safe sex is the best way to preventSTDs and is important for everyone who issexually active. Safe sex practices include:• Having sex with only one partner (a

monogamous relationship)• Washing your genitals before and after sex.• Always using latex condoms with a

spermicide• Avoid having sex with anyone who has

sores, a rash, or a foul discharge from their genitals

• Avoid anal sex.

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Activity

Liver Handbook

There are some additional considerationsfor patients who have received transplantsfor hepatitis B or hepatitis C. Sexualpartners of patients who have hepatitis Bmay wish to be tested for the virus andshould be vaccinated if they are not immune.Sexual transmission of hepatitis C is rarebut can occur. Sexual partners may also betested for this virus. However, if this is along-term sexual relationship and partnersdo not have the virus, the risk of contractingthe infection may be low. You may wish totalk to your transplant doctor or coordinatorif you and your partner are consideringwhether or not to use condoms.

Birth Control and PregnancyFemale transplant patients who did notmenstruate before transplant because ofliver disease and illness, often begin toovulate or menstruate within a few weeks tomonths after liver transplant. Mosttransplant centers recommend that womenavoid getting pregnant for 1-2 yearsfollowing liver transplant .

Birth control barrier methods using latexcondoms with spermicidal jelly or creamwith nonoxynol-9, or the sponge ordiaphragm with spermicide are recommended.Patients with multiple partners shouldalways use a condom as well. Before usingbirth control pills, the Norplant, or gettingan injection of Depo-Provera, you shouldcontact your gynecologist and transplantcoordinator. These methods may be used insome cases, but recommendations vary bytransplant center. Most centers recommendthat barrier methods be used for severalmonths until the liver function is stable and

there are no further complications withinfections. Oral contraceptives orimplantable devices may then be considered.

For female transplant recipients who areconsidering becoming pregnant, prenatalplanning and consultation with yourobstetrician and transplant team isimperative to ensure a healthy pregnancyfor you and your baby. Some medicationsmay be harmful to the developing fetus andmust be stopped before you become pregnant.If you plan to become pregnant, discuss thisimportant issue with your transplant doctor,obstetrician, and coordinator before youstop using birth control.

Generally, pregnancy after transplantationis successful. Many female transplantrecipients have become pregnant anddelivered healthy babies. There is however,an increased incidence of prematurity,lower birth weights, and Caesarian sections.The mother also has an increased risk ofhigh blood pressure and preeclampsia.Breastfeeding is not recommended sincesome medications can be transmitted to theinfant through breast milk. Outcomes ofpregnancies of transplant recipients arebeing followed through the NationalTransplantation Pregnancy Registry (NTPR).Your physician can discuss the findings ofthis group in greater detail with you if youare considering becoming pregnant.

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Activity

Liver Handbook

OtherConcernsDrinking WaterIt is safe for you to drink treated municipaltap water after your liver transplant. If youlive in an area that has well water, it is bestto boil that water to a rolling boil for atleast 1 minute before using it for drinkingwater. Well water should be tested by yourlocal water authority every 6-12 months,even if you are not using it for drinkingwater. Contact your local water authority orthe EPA Safe Water Hotline (in the US) at800-426-4791.

TravelAs you recover and return to a more normalroutine, you may consider traveling orgoing on a vacation. Please check withyour transplant coordinator for your center'sguidelines on traveling early aftertransplant. Some centers recommendwaiting for 6-12 months before you take anextended vacation, particularly one that maybe remote.

If you are planning a vacation, you may beadvised to have your blood tests taken a fewweeks before to be sure there are noabnormal levels. You should call yourcoordinator if you need to review yourmeds, blood test results, or any specific careneeds. If you are traveling to a differenttime zone, discuss how to adjust yourmedication times with your coordinator.Before you leave, be sure you know wherethe closest hospital and/or transplant centeris located in case of an emergency. Be sureto take enough medication to last yourentire trip and if flying, pack yourmedications in a carry-on bag. Taking extramedication and packing the extra medications

in a different bag may also be helpful. Takeall your important phone numbers with youin case you need to call your transplantcenter while you are away. You may wantto drink bottled water if you are traveling inareas where the sanitation is of concern.

Most transplant centers discourage travel tothird world countries for patients who areimmunosuppressed. The risk of acquiringinfections in these areas is high andappropriate healthcare may not be available.Additionally, some foreign travel mayrequire immunizations that are not safe forpatients who are immunosuppressed, suchas measles and smallpox. If you plan totravel in this type of area, please discussthis with your transplant doctor andcoordinator so that you are fully informedof the risk.

Medic-Alert Identification Many centers recommend that patients weara Medic-Alert necklace or bracelet to beidentified as a transplant recipient in case ofan accident and/or if emergency care isrequired. Medic-Alert, located in Turlock,CA, is a nonprofit membership organizationthat is recognized internationally. Theorganization's goal is to protect and savelives by providing information duringemergencies. These tags are recognized byemergency operations teams as they care foraccident victims. Your coordinator can provideyou with information on this company oryou can contact them at 1-800-432-5378 orat http://www.Medicalert.org to become amember, order your tag, and to update themon any medical information that you wouldlike to have in your file.

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Liver Handbook

PetsPets can be an important part of family life.Research has shown that pets help relievestress and have positive physical andpsychosocial benefits, as well as possiblyimproving our quality of life. One study hasreported that older adults who had petswere better able to handle crisis situations.

Although animals do carry a number ofdiseases that can be transmitted to humans,few are life-threatening. If you followsome common-sense guidelines, your riskof acquiring an infection is minimal.

• Wash your hands thoroughly after petting or playing with your pet, particularly before you eat, drink, or handle food.

• Be sure that your pet is healthy, has regular check-ups, and has received its required immunizations.

• Groom and/or bathe your pet regularly. Keep cat’s claws trimmed.

• If possible, avoid your pet’s bodily fluids (urine, feces, vomit). If your pet has an accident, have someone else clean it up if possible. If not, wear gloves and clean thearea with a disinfectant.

• Don’t let your pet lick your face.• Do not change your cat’s litter box if

possible. The litter and liner should be replaced frequently and the litter box cleaned at least monthly with a disinfectant or boiling water.

• Contact your physician immediately if you are bitten by any animal.

• Avoid stray or sick animals and exotic animals.

PlantsSome centers recommend that transplantpatients avoid exposure to live plants andsoil for 3-6 months after transplant. If youhave a cut on your skin, you are at greaterrisk of infection since many types oforganisms grow in the soil. If you are agardener, be sure to wear gloves wheneveryou are working in the soil. It is alsohelpful to wash your hands every so oftenwhile gardening as well as when you aredone working. Try to avoid compostpiles and rotting materials when possible.Check with your transplant coordinator foryour center's guidelines.

SunscreenTransplant recipients have a higher risk ofdeveloping certain types of skin cancers.Patients should use a sun screen with a sunprotection factor (SPF) of at least 15 whenout in the sun. Additionally, patients shouldwear a hat and limit their exposure to thesun, especially when the sun is highest inthe sky from 10:00 AM to 2:00 PM.

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Other Concerns

Liver Handbook

RoutineHealthcareFollow-upWhen you return home, you will resumeroutine care with your local physician andother health professionals. However, mosttransplant centers prefer to manageimmunosuppression and any transplant-related care such as episodes ofrejection, liver biopsies, and sometransplant-related infections. Check withyour coordinator so you know who to callwhen you have any signs or symptoms ofillness. In some cases, you may be told tosee your local doctor, and then return to thetransplant center for further evaluation.Your local doctor may be asked to performcertain blood tests and send the report to thetransplant center.

Local Primary Care Physician (PCP)Your local physician is usually an internalmedicine physician or a hepatologist whowill see you for routine medical follow-up.This physician usually manages preventativehealthcare, routine physical examinations,immunizations, and complications related tohigh blood pressure, diabetes, highcholesterol, or bone disease. You may beasked to see this physician within the first 2months of returning home. Your transplantcenter should have the contact informationfor your local physician before you leavethe transplant center. The coordinator willforward information to your local physicianabout your transplant surgery, post-opcourse, and your current care. Your coordinator will also discuss the transplant

center’s role in your care and how eachphysician can work cooperatively to besure you do well. Your local physicianplays an important role in examining you forany possible complications. Be sure to seethis doctor regularly and have reports ofthose visits forwarded to your transplantcoordinator.

Dental CareRoutine dental examinations every 6months are essential for good dental healthfor everyone. However, since you areimmunosuppressed, an abscessed tooth orgum infection could lead to more seriouscomplications. Additionally, gum overgrowth(gingival hyperplasia), a side effect ofcyclosporine, may lead to bleeding gumsand infection. Although changes inimmunosuppression may help, in somecases the overgrown gums will need to besurgically reduced.

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Liver Handbook

You should visit your local dentist within3-6 months of returning home. Yourtransplant coordinator can forward anymedical information that the dentist needsfor your health history. Preventativeantibiotics are required for any invasivedental work, which may include cleaning,before the procedure. If there is anypossibility that the gums will be cut, there isan increased risk of infection. Your dentistwill know what to prescribe for this, buthe/she can also call your coordinator foryour center's protocol. Amoxicillin is usuallyused prior to the procedure, but check withyour dentist or transplant coordinator beforeany invasive dental work.

Vision CareRoutine eye examinations are usuallyrecommended every other year. However,some patients may require exams every6-12 months if they have any risks forvision or eye problems. Prednisone, givenin high doses for prolonged periods, maylead to the development of cataracts and/orglaucoma in some patients. Visit yourvision care specialist within 2-3 months ofreturning home so he/she is updated onyour health status and can assess your riskfor any complications.

Gynecological CareWomen should have yearly check-ups asusual with their local gynecologist.Papanicolaou's smear (Pap smear) andmammograms should be completed asrecommended for your age and any riskfactors. After liver transplant, there may bean increased risk for cervical and breastcancers.

If you are of child-bearing age, discussappropriate birth control methods with yourgynecologist. Birth control should bestarted before you resume sexual activity.Barrier methods are recommended until thepatient is several months to a year aftertransplant. At this time, oral contraceptivesor implanted devices may be considered.Your coordinator can also forwardinformation about your liver transplant tothis physician and provide the center'srecommendations for birth control methods.If you are planning to become pregnant,discuss this with your gynecologist beforeyou stop using birth control.

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ImmunizationsImmunizations are a part of routinehealthcare. You have probably received allyour required immunizations as a child andnow may only require boosters for specialreasons. Now that your immune system issuppressed, you must not receive any livevaccines. Receiving a live vaccine couldcause serious health complications becauseyou may develop the virus you are beingimmunized against. This is because theseimmunizations contain some of the actualvirus.

You should neverreceive these live viruses:

Oral polio (Salk vaccine):An inactivated form of this vaccine, theSabin injection, is now available instead ofthe oral vaccine. This injection does notpose a risk to someone who isimmunosuppressed. Some centersrecommend that transplant recipients avoidall contact with patients who have had theoral polio vaccine for up to 8 weeks sincethe virus might be shed in their stool andsaliva. If you have a young child, be surethat your child receives the inactivated formof the vaccine.

MMR (measles, mumps, rubella): This is another live vaccine given to childrenat 12-15 months and again at 4-6 years. Asan adult, you should not need this vaccine.You do not need to avoid a child who hasrecently received the MMR.

Varivax (chickenpox or varicella vaccine): This is a live vaccine given to children at 1year of age to immunize them againstchickenpox (varicella). People who areimmunosuppressed should not receive thisvaccine. Some centers believe you may beat risk if you are in close contact with achild who has received the vaccine. Checkwith your coordinator for your center’sguidelines.

Influenza VaccineThe yearly “flu shot” (injection) is aninactivated vaccine to provide protectionfrom influenza. Most transplant centersstrongly encourage transplant recipients andtheir close family contacts to get thisvaccine every year. You can receive thisvaccine if it is at least 3 months since youhave had your liver transplant. Influenzamay be more serious in someone who isimmunosuppressed. This vaccine willprotect you from the 3 most commonstrains of influenza that are reported for thatyear. You should not receive the influenzavaccine if you are allergic to eggs or chicken.

Tetanus ToxoidThe general public is advised to get atetanus booster every 10 years. If you get adirty injury or cut, or are bitten or scratchedby an animal, you should get this vaccine.

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Other Health ConcernsSmokingSmoking is a risk to everyone’s health.Smoking can cause cancer, heart disease,and lung disease. Additionally, smokersmay have prolonged respiratory infectionsbecause of the effect of smoke on the lungs.Transplant recipients who smoked beforetransplant are strongly encouraged to stopsmoking. Since nicotine is broken down ormetabolized by the liver, there is a possibilitythat some medications, particularlytacrolimus and cyclosporine, may not bemetabolized well and that levels of thesemedications may be lower in smokers. Youshould never risk losing your healthy liverfor cigarettes.

Your transplant coordinator or social workercan help you find local support groups tohelp you stop smoking. If you wouldlike additional information and support,contact the following organizations:

American Heart Associationhttp://www.Americanheart.org

American Lung Associationhttp://www.2lungusa.org/

American Cancer Society http://www.cancer.org

If you are interested in using anymedications to help you stop smoking, suchas the NicoDerm® patch, discuss this firstwith your coordinator to check on yourcenter's recommendations.

AlcoholAlcohol is metabolized, or broken down, inthe liver. Drinking any type of alcoholicbeverages can harm your liver. Many ofyour medications are metabolized by theliver and with the additional stress ofbreaking down alcohol as well, liver cellsmay be destroyed.

If you have had a problem with alcohol inthe past, this was probably discussed atyour transplant evaluation. You may havehad to attend counseling sessions or youmay have been enrolled in a rehabilitationprogram before you received a livertransplant. It is important that you continuecounseling as you recover from transplantto avoid any possible injury to your healthyliver through alcohol use. There are manyways your transplant center and localphysicians can help you recover andcontinue to do well after transplant.

Illegal Drug UseDrugs such as marijuana, cocaine, LSD, andEcstasy are toxic chemicals that are harmfulto the liver as well as other organ systems.These toxic drugs will harm the sensitiveliver and interfere with the break down ormetabolism of your transplant medications.The illegal use of drugs is not tolerated byany transplant center. If you have hadproblems with illegal drugs in the past orare concerned you may want to use themagain, discuss this issue with yourtransplant coordinator, social worker, orcounselor. Help is available throughcounseling and support programs.

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Glossaryof TermsA

ABO TESTINGBlood tests that classify human blood intoone of four groups: O, A, B, or AB.

ALBUMINAlbumin is a protein made by the liver thathelps maintain fluid balance in the body.

ANEMIAA decreased amount of circulating redblood cells in the body. Anemia may resultfrom blood loss, destruction of red bloodcells, or a decrease in the production of redblood cells. The hemoglobin level (hgb) isdecreased in patients with anemia.

ANTIBODYAn antibody is a protein produced by theimmune system in response to specificantigens. Antibodies help the body fightorganisms that cause infection as well asany foreign substances.

ANTIGENAn antigen is a substance, usually found onthe surface of cells, that identifies the cellas “self” or “non-self”. The antigen causesan immune response through antibodyproduction against the antigen.

ARTERIOGRAMAn arteriogram is a radiologic study (x-ray)or picture of the arteries in an organ systemthat is visualized through a special dye thatis infused in the blood stream.

ASCITESAn abnormal accumulation of fluid in theabdomen.

B

B CELLSB cells are a type of lymphocyte, or whiteblood cell, that develop in the spleen andare responsible for the body’s immunity. B cells produce antibodies which help fightinfection and foreign substances.

BILEFluid made by hepatocytes, the liver cells,that is secreted into the bile ducts and theninto the small intestine to help absorb fats.

BILE DUCTA vessel in the liver that carries bile fromthe liver cells to the common bile duct. Thecommon bile duct then carries bile into theintestine.

BILIRUBINA substance made from the break down ofhemoglobin. Hemoglobin is a substance inred blood cells that carries oxygen to bodytissues. Red blood cells are trapped anddestroyed in the spleen as they wear out.When these cells are destroyed, bilirubin isreleased into the blood (unconjugatedbilirubin). The liver then processes thistype of bilirubin, combines it with anothersubstance, and excretes the bilirubin (calledconjugated bilirubin) through bile. Bileflows from the individual liver cells,through the bile ducts, and into the intestine

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where it leaves the body in the feces. Thecharacteristic brown color of feces is due tobile. Patients with liver disease often haveclay-colored or tan feces since the liver maynot be producing bile due to missing orblocked bile ducts. An elevated bilirubinlevel may also be a sign of liver rejection.

BIOPSYA biopsy is a procedure that provides asmall amount of tissue from an organ,tumor, bone, or other body tissue to find outmore information about that organ or tissue.A core needle biopsy is usually performedto examine liver tissue. A tiny cylinder oftissue, showing liver cells and how they arearranged, is removed through puncture withthis needle. This tissue is examined underthe microscope by a pathologist to determinethe cause of liver disease, or to look for anyevidence of rejection or infection.

BLOOD UREA NITROGEN (BUN)A test that indicates kidney function. TheBUN is a product of protein breakdown,or waste product, normally excreted by thekidney.

C

CALCIUMA mineral measured in the blood that isrequired for bone growth and for bloodclotting. It is also needed for the heart andnerves to function.

CATHETERA flexible tube that enters or exits the body.Catheters may be used to drain body fluids(a Foley catheter drains urine) or toadminister fluids or medications through avein (a Broviac catheter).

CHIMERISMThe existence of more than one geneticbackground within one person. Transplantrecipients show chimerism through geneticmarkers since they have cells from thedonor organ in their bodies.

CHOLANGITISA bacterial infection in the bile ducts of theliver. Cholangitis can occur if bile flow isobstructed due to scarring of the duct or anobstruction in the duct. It can also occur inpatients who had bile duct reconstruction orthe Kasai procedure when bacteria from theintestine can invade the liver. Symptoms ofcholangitis may include fever, an elevatedbilirubin level, jaundice, and low bloodpressure. Antibiotics are used to treatcholangitis. Patients with recurrent cholangitismay be prescribed a preventative dose ofantibiotic daily. Treatment of the obstructionthrough surgery or transplantation willultimately resolve cholangitis.

CHOLESTASISAn accumulation of bile in the liver. Thiscan be caused by medications, an injury tothe liver, total parenteral nutrition (TPN), orgallstones and may resolve over time orwhen the medications or TPN are discontinued.Cholestasis may also occur as a symptom ofmany liver diseases.

CHOLANGIOGRAMA test that examines the bile ducts in theliver for any leaks or blockages. A dye isinjected into the bile ducts and then theliver is examined through an x-ray.

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CHRONICHaving a disease for a long period of time.Chronic disease may worsen slowly overtime. It may be treatable but is usually notreversible.

CIRRHOSISCirrhosis occurs when something destroysthe liver cells causing the cells to die.When many cells die, there is scarringthroughout the liver. A cirrhotic liverbecomes very firm, unlike its normalspongy texture, and can be shrunken in sizeor enlarged.

COAGULATIONThe process of blood clotting. A variety offactors are necessary for the blood to have anormal clotting ability. Clotting ability isassessed by several blood tests includingthe prothrombin time (PT), partialthromboplastin time (PTT), and plateletcount. An abnormal clotting time is oftenseen in patients with liver disease.

COAGULOPATHYDecreased ability of the blood to clot whichincreases the risk of bleeding, particularlywith surgery or any invasive proceduressuch as biopsies.

COMPLETE BLOOD COUNT (CBC) orFULL BLOOD COUNT (FBC)A blood test that measures many parts ofyour blood count including the hemoglobin(hgb), hematocrit (hct), platelets (plt), andmany types of white blood cells (WBC).

CT SCANComputed Tomography scan; a noninvasiveradiologic study that shows a detailedcross-section of organ and tissue structure.

CREATININEThe creatinine level is an indication ofkidney function. It is a waste productproduced by the muscles and released intothe blood stream. Creatinine levels may beincreased with kidney disease. Abnormalcreatinine levels are also seen in patientswith kidney dysfunction caused by liverdisease or medications.

CROSSMATCHThis is a test that examines how well thetransplant recipient’s blood matches withthat of the donor. A high positive cross-match may indicate the need for higherlevels of immunosuppression for the liverrecipient. A negative crossmatch meansthat there is no reaction between the donor’sand recipient’s blood.

CYTOMEGALOVIRUSCMV; a virus commonly seen followingtransplantation that can cause an infectionin the gastrointestinal tract, blood, liver,lungs, and/or eyes. CMV is a type ofherpes virus.

D

DIABETESA disease originating in the pancreas relatedto insulin production that causes high levelsof glucose (sugar) in the blood

DIALYSISA procedure to remove waste products fromthe blood in patients with kidney disease.Patients with severe liver disease whodevelop kidney dysfunction may requiredialysis until normal kidney functionreturns, usually following liver transplant.

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DIASTOLICThis is the “bottom number” of bloodpressure measurement when the heart muscleis at rest, expanding and filling with blood.

DIURETICA medicine that helps remove excess fluidfrom the body tissue by causing the body toexcrete sodium. Furosemide (Lasix®) andspironolactone (Aldactone®) are diuretics.These medications will increase urine output.

E

EDEMASwelling of tissue, particularly in the face,hands, legs, and ankles. Diuretics may helpto decrease edema.

ELECTROLYTESThe dissolved form of a mineral found inthe blood that helps maintain bodilyfunctions and fluid balance. Sodium,potassium, chloride, magnesium, calcium,and phosphorus are some of the electrolytesfound in your body.

ENCEPHALOPATHYConfusion or an altered mental status.Encephalopathy may be seen in patientswith end-stage liver disease. Due to liverdysfunction, ammonia can not bemetabolized by the liver. Ammonia buildsup in the brain and interferes with oxygengetting to the tissue, causing confusion andtiredness. Medications such as lactulose,and a low protein diet can help decrease theammonia level so that the patient does notdevelop encephalopathy.

ELECTROCARDIOGRAM (EKG/ECG) A noninvasive test that records the electricalactivity of the heart.

ENZYMEA protein made in the body that is capableof changing a substance from one form toanother. The ALT and AST are enzymesfound in liver cells.

ERCPEndoscopic re t rograde cholangiopancreatogram. A test thatexamines the drainage system or ducts ofthe gallbladder, pancreas, and liver (thebiliary tree).

FIBROSISThe presence of fibrous tissue in the liverthat causes scarring and liver dysfunction.Fibrosis develops into cirrhosis.

FULMINANT LIVER FAILURE A severe form of liver disease that starts,then progresses very rapidly.

G

GALL BLADDERA small sac-like object attached to the liverthat stores bile. The gall bladder isremoved from the donor liver before it istransplanted into the recipient.

GASTROENTEROLOGISTA gastroenterologist is a medical doctorwho specializes in the diagnosis, treatment,and management of diseases of the digestivesystem, including the liver.

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GASTROESOPHAGEAL VARICESEnlarged veins of the esophagus and stomachdue to scarring in the liver that obstructs thenormal flow of blood through the liver.

GINGIVAL HYPERTROPHYThis term describes swelling or enlargementof the gums. Gingival hypertrophy is a sideeffect of cyclosporine and some seizuremedications. Gum overgrowth may becontrolled or decreased through good oralhygiene, surgical gum reduction, andchanges in immunosuppression.

GLUCOSEA type of sugar in the blood that suppliesenergy to the cell. Glucose levels may varywith diet, medications, stress, and organdysfunction.

GRAFTAn organ or tissue that is taken from oneperson and placed into another (transplantation).A graft between humans or the same specieswith different genetic material is called anallograft. A graft between different species,such as a baboon to human, is called a xenograft.

H

HEMATOCRIT (HCT)A measurement of the amount of red bloodcells in the blood.

HEMATOMAA bruise; swelling caused by theaccumulation of blood in tissue.

HEMOGLOBIN (HGB)A substance in red blood cells that givesblood its characteristic red color and containsiron and protein. Hemoglobin carriesoxygen from the lungs to the tissues andcarbon dioxide from the tissues to the lungs.

HEPATICA term that refers to the liver or having todo with the liver.

HEPATIC ARTERYThe blood vessel that carries oxygenatedblood to the liver from the heart.

HEPATIC VEINThe blood vessel that carries deoxygenatedblood from the liver to the heart.

HEPATITISAn inflammation of the liver, usuallycaused by infection.

HEPATOLOGISTA medical doctor who specializes intreating diseases of the liver.

HEPATOMEGALYA term that describes an enlarged liver.

HERPESA family of viruses that causes infection inhumans.

HIRSUTISMExcessive hair growth. Hirsutism is acommon side effect of cyclosporine.

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HISTOLOGYThe study of living tissue. The histology ofa liver disease, for example, would bedetermined by examining a piece of livertissue from a biopsy under a microscope.

HYPERLIPIDEMIAA high level of fats (triglycerides or cholesterol)in the blood. This can be caused by diet,genetic disorders, or medications.

HYPERTENSIONHigh blood pressure.

I

IMMUNE SYSTEMA specialized system of cells and proteinsthat protect the body from organisms thatmay cause infection or disease.

IMMUNITYThe ability of the body to resist a specificdisease.

IMMUNIZATIONProviding the body with protection fromcertain diseases through vaccinations.

IMMUNOSUPPRESSED Describes the immune system of atransplant recipient which is weakened orinhibited by certain medications. Specificmedications (such as cyclosporine,tacrolimus, and prednisone) are used tolower the ability of the immune system toattack foreign cells (the transplanted tissue).Immunosuppression will help decrease thebody's ability to reject the transplanted organ.

INFECTION Organisms such as bacteria, fungi, andviruses that invade the body and reproducecausing a variety of symptoms.

INSULINA hormone secreted in the pancreas by theIslets of Langerhans that regulates sugarmetabolism. Insulin helps the body usesugar and other carbohydrates. As insulin isreleased in the body, the blood glucose leveldecreases.

INTRAVENOUSwithin the blood stream. Fluids andmedications may be given intravenously aswell as by mouth (PO).

J

JAUNDICETerm used to describe a yellow appearanceof the skin and eyes commonly seen inpatients with liver disease. Jaundice resultsfrom an increased amount of bilirubin in thebody.

LLIVER FUNCTION TESTS (LFTs)Blood tests used to determine how well theliver is functioning. These include the ALT,AST, GGTP, bilirubin, and alkalinephosphatase.

LYMPHOCYTESCells produced by the lymph glands that areresponsible for immunity. They defend thebody against infection and foreign substancesby producing antibodies and other substances.

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M

MAGNESIUMA mineral required for normal bodilyfunction. Magnesium is involved in nerve,skeletal muscle, heart, and cell function. Itis also involved in blood clotting and thebreakdown of carbohydrates and proteins.

N

NEPHROTOXICITYKidney damage, usually as a result ofmedications or other substances.

NEPHROLOGISTA medical doctor who specializes in thediagnoses, treatment, and management ofkidney diseases.

NONADHERENCE/NONCOMPLIANCEFailure to follow instructions for medicalcare after transplantation. This may includenot taking medications as prescribed, notobtaining labs as instructed, or missing clinicappointments and tests. Nonadherence is asignificant post-transplant issue that oftenresults in rejection, infection, an ultimatelyloss of the graft.

P

PNEUMOCYSTIS (PCP)A bacterial infection of the lungs that ismore common in immunosuppressedpatients. Transplant recipients are usuallyprescribed an antibiotic (Bactrim®/Septra®)to prevent this type of pneumonia.

PLATELETA type of blood cell that is involved in theclotting process. Platelets help stop bleedingat the site of the injury by clumping andforming a clot. If the platelet count is low,there is an increased risk of bleeding.

PORTAL HYPERTENSIONThis term describes increased pressure inthe veins that collect blood from thestomach, spleen, pancreas, and intestines(the portal system). The blood from all theveins of these organs is collected into theportal vein, which drains into the liver. In adiseased liver that has fibrosis or cirrhosis,the blood from the portal vein may not beable to flow easily through the liver.Increased pressure then develops in theportal vein and can cause an enlargedspleen, fluid in the abdomen (ascites),and/or enlarged veins in the stomach oresophagus (varices).

PORTAL VEINThe vein that collects blood from the stomach,spleen, pancreas, and intestines and carriesthat blood to the liver.

PTLDPost-transplant lymphoproliferative disease;a wide spectrum of viral disorders associatedwith the Epstein Barr Virus (EBV) that mayrange from a self-limiting mononucleosis(“mono”, glandular fever) to a type oflymphoma, or cancer of the lymph nodes.PTLD is a complication of a suppressedimmune system and occurs in only a smallpercentage of patients. Treatment includeslowering immunosuppression andadministering antiviral medications.

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POTASSIUMA mineral required for normal bodyfunctioning. Potassium is important inhelping the heart, nerves, and musclesfunction properly. Potassium also helpschange carbohydrates into energy and informing proteins. The kidneys excrete anyextra potassium in the body. It is importantto follow potassium levels after transplantbecause some antirejection medications cancause an increase in the potassium level.

PROPHYLACTIC ANTIBIOTICSMedications that are prescribed to preventcertain infections in a specific group ofpatients who are at a higher risk for theseinfections.

PRURITIS Itching. Patients with liver disease mayhave increased itching due to liverdysfunction since there is an accumulationof bile salts in their skin.

R

RENALA term that refers to the kidney or having todo with the kidney.

REJECTIONA process in which the body's immunesystem attacks the transplanted organ,usually resulting in damage to that organ.

S

SODIUMA type of salt found in the blood andrequired by the body to maintain thebalance between electrolytes and water.

SHINGLESA viral infection caused by the herpeszoster virus that usually affects an area by anerve, resulting in fluid-filled blisters andpain. Shingles are most commonly seen onthe neck, abdomen, and legs. The virus canalso affect the nerves of the eye.

SPLEENAn organ located under the rib cage on theleft side of the abdomen. The spleenremoves old or deformed red blood cells,white blood cells, and platelets. It alsomakes lymphocytes, a type of white bloodcell that help produce antibodies. Thespleen may enlarge (splenomegaly) inpatients with liver disease.

SPLENOMEGALYSplenomegaly is a term used to describe anenlarged spleen. In patients with liverdisease, splenomegaly results from portalhypertension. Splenomegaly can cause alow platelet count that may increase the riskof bleeding.

SYSTOLICThis is the “top number” of blood pressuremeasurement. The systolic pressure measuresthe pressure as the heart muscle contracts topump blood around the body.

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T

T CELLST cells are a type of lymphocyte, or whiteblood cell, that develop in the thymus glandwhich is located in the upper chest in frontof the heart. T cells are associated withacquired immunity, or the ability of thebody to fight an infection or foreignsubstance that it was exposed to in the past.T cells play a major role in the rejectionprocess.

T TUBEA flexible tube may be placed inside thecommon bile duct to drain bile from theliver to the outside of the body into adrainage bag. Sometimes liver transplantrecipients have this drainage bag for a fewweeks after transplant to insure that bile isdraining well from the transplanted liver.

THRUSHA fungal infection that looks like whiteplaques or spots in the mouth (oral mucosa),throat, and on the tongue. Patients who areimmunosuppressed are more at risk fordeveloping thrush.

U

ULTRASOUNDA test that displays internal bodily organs,blood vessels, and ducts using sound waves.An ultrasound of the liver may be obtainedto examine the size of the liver and spleen,the size and blood flow in the hepatic arteryand portal vein, and the size and patency ofthe bile ducts.

V

VARICESEnlarged blood vessels, particularly in thestomach and esophagus

VITAL SIGNSThe measurement of temperature, bloodpressure, heart rate, and respiratory(breathing) rate

W

WEANTo slowly withdraw or reduce;Immunosuppression, particularly steroids,may be weaned slowly over time in patientswho do not reject the transplanted liver.

WHITE BLOOD CELLThis is a type of blood cell that fightsinfection.

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Transplant Educational Resources, SupportGroups, and Organizations

American Association for the Study of LiverDiseases http://www.hepar-sfgh.ucsf.edu

American Association of Kidney Patients(AAKP) http://www.aakp.org

American Organ Transplant Association(AOTA) http://www.a-o-t-a.org/

American Liver Foundation http://www.liverfoundation.org/

Children’s Liver Alliance http://www.liverkids.tk

Children’s Liver Association for SupportServices http://www.classkids.org

Children’s Organ Transplant Association(COTA) http://www.cota.org

Coalition on Donation http://www.shareyourlife.org

Fujisawa Healthcare, Inc. http://www.fujisawausa.com

International Transplant Nurses Societyhttp://www.itns.org

Minority Organ Tissue Transplant EducationProgram http://www.mottep.org

National Council on Patient Information andEducation http://www.talkaboutrx.org

National Foundation for Transplanthttp://www.transplants.org

National Transplant Assistance Fund http://www.transplantfund.org

National Kidney Foundation, Inc.http://www.kidney.org

Sangstat http://www.sangstat.com

Transplant Health http://www.Transplanthealth.org

Transplant Patient Partnering Programhttp://www.rocheusa.com

Transplant Recipients’ InternationalOrganization (TRIO) http://www.trioweb.org

Transplant Speakers Internationalhttp://www.transplant-speakers.org

Transweb http://www.transweb.org

United Network of Organ Sharinghttp://www.unos.org

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ITNS is not responsible or liable for any information located as a result of visiting these websites. Thesesites are provided as a network resource. Information from the internet in regard to your transplantshould always be discussed with your transplant team.

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Vital Signs Form __________________________Patient’s Name

Date/Time Temp BloodPressure

Pulse Weight

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Comments

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Appointment Diary __________________________Patient’s Name

Date/Time Results Reason for Appt.Test Place

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My Transplant Team __________________________

Patient’s Name

NAME PHONE EMAIL FAX (if needed)

My Transplant Center: ____________________________________________________

Address: ____________________________________________________

____________________________________________________

Phone: ____________________________________________________

Fax: ____________________________________________________

Website: http://www____________________________________________

TransplantCoordinator

Transplant MD

Clinical NurseSpecialist

NursePractitioner/PA

Hepatologist

Social Worker

Pharmacist

PhysicalTherapist

Psychologist

Dietician

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My LocalHealthcare Team __________________________

Patient’s Name

NAME PHONE EMAIL FAX (if needed)

Internist (PCP)

Hepatologist

Dentist

Opthalmologist

OB/Gyne

Pharmacist

Lab

PhysicalTherapy