Organ Transplant Handbook

Transcription

1 Organ Transplant Handbook A Guide for the Adult Patient Organ Transplant Program University of Minnesota Medical Center, Fairview Department of Nursing Services Minneapolis If you are deaf or hard of hearing, please let us know. We provide many free services including sign language interpreters, oral interpreters, TTYs, telephone amplifiers, note takers and written materials.

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3 Organ Transplant Handbook A Guide for the Adult Patient

4 The information in this book should not replace the advice of your doctor. Always follow your doctor s instructions. Before having any test or treatment, talk to your doctor to be sure you fully understand the risks and benefits involved. Copyright 2014 Fairview Health Services. All rights reserved. SMARTworks REV 05/14.

5 Contents Preface Your Role as a Patient v Chapter One: Transplant Medications 1 Chapter Two: Discharge Instructions 43 Chapter Three: General Health 61 Chapter Four: Post-Transplant Complications General (applied to all patients) 85-86, Specific to organ: Heart 86 Kidney 86 Liver 88 Lung 89 Pancreas 91 Chapter Five: Nutrition 99 Chapter Six: Emotional Health 115 Chapter Seven: Financial Resources 117 Chapter Eight: Diabetes and Transplantation 129 Appendix Resources 137 iii

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7 Your Role as a Patient Preface This handbook is written for people who have a newly transplanted organ. It will help you care for yourself and your new organ after surgery and throughout your life. As a member of your health care team, it is important to remain actively involved in your medical care. Paying close attention to your health and learning about transplantation is important to your well being, and it will help us provide you with the best health care available. To participate fully in your treatment, you should: Learn about organ transplantation and your general health. Knowing what is important in your care may save your life. Include your family or close friends in your health care education sessions. It will be helpful to have people close to you who understand and can be involved with your transplant experience. They can also listen and take notes for you. Keep a notebook and write down any questions that you want to ask your primary care doctor. Record the answers that you receive. You can also write them in this book. Regularly fill out the Keeping Track of Lab Values and Vital Signs log book. Bring it to your clinic appointments. Follow through on your treatment plan and any lifestyle changes that are recommended by your primary care doctor. Keep your transplant coordinator updated about changes in your health or financial status. Tips for using this book Pick the sections you are most interested in and read them first. Underline or highlight information, as you desire. Refer to this book when you have questions. If you have additional questions or need more information, talk to your transplant coordinator. Refer to the Resources chapter at the back of this book for phone numbers, addresses, and helpful Web sites. The entire staff at University of Minnesota Medical Center, Fairview wants you to be able to return to a more satisfactory lifestyle to work, to play, to enjoy life. Your Role as a Patient v

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9 Transplant Medications Chapter One General Information After your transplant, you will receive many medications. Information about medications routinely given after an organ transplant is included in this chapter. Discuss any concerns or questions you have with your primary care doctor or your transplant coordinator. A transplant pharmacist is available to answer your questions at Information about other medications you may need is available from your nurse or pharmacist. What you need to know You need to take all medications as directed. Do not stop, change or adjust any transplant medication on your own.» These medications should be adjusted only by the transplant staff at the University of Minnesota Medical Center, Fairview.» If you stop taking the anti-rejection medications or miss several doses, eventually rejection will occur. Other medications, like blood pressure medications or insulin, should be adjusted by your primary care doctor or specialist. When to Call Your Transplant Coordinator Call if you: Notice any health changes or side effects that you think are caused by your medications. This includes nausea, vomiting and diarrhea. Need to change, adjust, or stop your medication. Have missed 2 doses of anti-rejection medication. Have taken more than the prescribed dose of medication. Are prescribed any new medication. Want to take an herbal or homeopathic remedy. Plan on becoming pregnant or breastfeeding your child. Cannot swallow pills. Change your anti-rejection medications from a brand name to a generic, or from a generic to another generic. Have questions about your medications. Are having financial problems that make it difficult to pay for your medications. Transplant Medications 1

10 Allergic Reactions to Medications Allergic reactions are possible when you take any medication. Please call your transplant coordinator and primary care doctor if you have: Skin rash Hives Itching More serious reactions that require immediate attention include: Swelling of the face or eyelids Wheezing Trouble breathing General Side Effects of Anti-Rejection Medication Anti-rejection medications suppress the immune system and this increases your risk of infection. In addition, these medications increase your risk for skin cancer and other cancers. (Please see Post- Transplant Complications chapter in this book for more information on these topics.) Specific side effects are listed later in this chapter for each medication. Blood tests will be done to check for electrolyte, blood count and cholesterol abnormalities while on these medications. Additional blood tests may be ordered by the transplant team, if warranted. Keeping Track of Your Medications While in the hospital, you will attend a medication class through the Patient Learning Center. The nurses on the unit will also go over your medications with you and answer your questions. When you are discharged, you should have an accurate list of your medications. Your Medication List It is important to keep your transplant coordinator and your primary care doctor informed of all the medications you are taking, including all those you buy without a prescription. We recommend keeping a medication list up-to-date and bringing it to all appointments. Keep only the current list of your medications. Throw away old medication lists. Use a pencil to write changes on your list. Erase names of medications that have been discontinued. Write down when you start or stop each medication or change a dose. Be sure to keep a list of the dates and times you take occasional medications like laxatives, pain medications or cold medications. 2 SOLID ORGAN TRANSPLANT HANDBOOK

11 Medication Tips Always use your medication list to set up your medications. Do not follow the instructions on your medication bottles or rely on memory. Medication containers that allow you to set up 1 week of pills at a time can be very helpful. We recommend keeping a 1 to 2 week supply of medication on hand, if possible. Your Medication Schedule You may adjust the times you take your medications to fit your schedule, but you must follow the recommended time between doses for each of your medications. Taking Medications During Illness It takes at least 2 hours for your medications to be adequately absorbed by your body. If you vomit within 1 hour of taking your medications, or if you see your pills come back up, you should take them again. If this happens twice, call your primary care doctor and your transplant coordinator. If it is after hours, you can reach the transplant coordinator on call at Obtaining Refills It is important to check with your insurance company about pharmacy refills and how much you are able to receive at one time and when you can have your prescriptions filled. Please anticipate in advance when you need to get your prescriptions refilled, especially if you will be traveling. Your transplant coordinator will refill any medications related directly to your transplant. However, you must be monitoring lab values and following care recommendations. Your primary care doctor can also write your prescriptions after you are discharged. Transplant Medications 3

12 Starting New Medications Many medications can interact with your transplant medications. Report any new medications prescribed by any doctor to your transplant coordinator during regular office hours (8:30 a.m. to 4 p.m. Monday through Friday). The following medications may interact with your transplant medications and could cause serious side effects:» erythromycin (EES, Erythrocyn, E-Mycin, Ery Ped, Pediamycin, Biaxin or Zithromax, Pediazole)» ketoconazole (Nizoral)» itraconazole, fluconazole, voriconazole, posaconazole, terbinafine (Lamisil)» allopurinol (Zyloprim)» diltiazem (Cardizem) and other calcium channel blockers» celecoxib (Celebrex)» valsartin (Diovan)» herbal remedies (e.g., St. John s Wort)» NSAIDs (e.g., Ibuprofen)» herbal supplements and nutritional supplements Remind anyone prescribing new medications of any allergies you may have and also of the medications you are already taking. It is best to purchase medications from just one pharmacy. The pharmacist will become familiar with and have a complete list of all the medications you are taking. Herbal or Nutritional Supplements Herbal supplements and/or remedies can pose serious and potentially dangerous problems to the transplant recipient. Echinacea and many others have been shown to increase immune system activity which can cause rejection. Long-term effects are not known and are difficult to study, as herbal supplements do not undergo the same stringent FDA testing or approval that other medications do. There are no federal guidelines for minimal testing and purity, this means every preparation of the same herbal supplement may be a bit different. It truly is a buyer beware market and may be even more perilous for the transplant recipient. Always check with your transplant coordinator before considering ANY herbal supplement remedy or nutritional supplement. 4 SOLID ORGAN TRANSPLANT HANDBOOK

13 Generic Medications Many medications are available in two forms brand name and generic. If your insurance company requires you to take generic medications when available, then stay on the generic formula. Do not switch back and forth.» Make sure your pharmacist is aware of this policy. Let your transplant coordinator know if you change your anti-rejection medication from brand to generic, or from one manufacturer s generic to another. Over-the-Counter (OTC) Medications Over-the-counter (OTC) medications, also known as nonprescription medications, are used to treat minor discomfort, illness, or injury. When selecting over-the-counter medications, it is important to: Consult your pharmacist before taking any over-the-counter medications. Let your pharmacist know about prescription medications you are taking. Read the labels carefully and ask your pharmacist to clarify any directions or warnings. See information in this chapter on Ibuprofen, Naprosyn and other anti-inflammatory medications. Kidney damage can occur when these medications are taken on a regular basis. Follow the guidelines carefully. Financial Considerations Discharge Prescriptions If your HMO or insurance company restricts where you can have prescriptions filled, you need to inform your nurse and not take home a supply from the University of Minnesota Medical Center, Fairview Discharge Pharmacy. If you are not sure if your insurance allows for discharge prescriptions, please call the pharmacy as soon as possible so they can check on this for you.» If you do have prescriptions filled at the University of Minnesota Medical Center, Fairview and your insurance refuses to pay, you will have to pay for these medications yourself. Prescription Assistance Please do not stop taking medications because of a lack of money. See the Financial Resources chapter in this book for more information. Transplant Medications 5

14 Medication Safety Keep all your medication out of the reach of small children. If you believe someone has been poisoned or taken too much medication: call your nearest poison control center or the Minnesota Poison Control System at or If you believe you made a major medication error: go to your local Emergency Room and let your transplant coordinator know. Keep these phone numbers by your telephone to use in case of such an emergency. Storage of Medication Keep out of bright light. Store in a cool, dry place like a linen closet or bedroom. Do not store medication in the bathroom or kitchen where it is warm and humid, or in the refrigerator, unless you are told to do so. For liquid medication, follow storage recommendations on the label. Always check expiration dates. Destroy medication you are no longer using.» Most medications should not be flushed down the toilet.» Contact your pharmacy or waste management provider with questions. 6 SOLID ORGAN TRANSPLANT HANDBOOK

15 Anti-Rejection Medicines Cyclosporine Modified Formula (CSA) Brand Name Neoral Generic Gengraf is the only generic form of cyclosporine we recommend. Let your transplant coordinator know if you change from brand to generic, or from one generic to another. Blood Levels Because absorption of cyclosporine is variable, blood levels must be monitored to determine the correct dose. Refer to the Discharge Instructions chapter in this book for information on how to obtain your blood level and mailers. How Supplied Capsules 100 mg or 25 mg» Carefully follow directions on box for storage and precautions.» Capsules may be out of the blister pack for up to 7 days. This means you can use 7-day medication box. Liquid 100 mg/ml» Store at room temperature.» Check expiration date on bottle.» Once the bottle is opened, the contents should be used within 2 months.» Measure dose with a syringe. Use a 1 ml syringe to measure doses less than 100 mg. Transplant Medications 7

16 Preparing Liquid Cyclosporine Cyclosporine can be taken straight or mixed with regular or chocolate milk, or juice. If mixing: Dose» Do not mix with pineapple, papaya or grapefruit juice.» Do not use a styrofoam cup, as it will absorb some of the medication.» Use the same type of cup each day.» Stir well and drink at once. Do not allow mixture to stand before drinking.» After you drink your dose, add more milk or juice to the cup and drink it to be sure that you are getting your entire dose. Based on weight Adjusted for lab values and side effects When to Take A.M. dose in the morning with breakfast P.M. dose 12 hours after the morning dose May be taken with food be consistent Try to take your medication at the same time each day. Do not take your A.M. dose on lab days until after your cyclosporine level has been drawn. Your level should be drawn as close to 12 hours after your P.M. dose as possible. Missed Dose It is important to take your entire prescribed dose to prevent rejection. If you miss 1 dose:» Take the missed dose as soon as you remember.» If it is time for your next scheduled dose, take 1 dose now, and then wait 4 to 6 hours before taking another dose which will make up make up for the one you missed.» Do NOT have your cyclosporine level done within 24 hours of changes in dose times. If you miss more than 1 dose, contact your transplant coordinator. 8 SOLID ORGAN TRANSPLANT HANDBOOK

17 Precautions Chemicals in grapefruit, grapefruit juice, and pomelos can alter the way this medication is broken down in your body. Do not have any of these without consulting your transplant coordinator or primary care doctor. Diarrhea and constipation will affect your cyclosporine blood level. Be sure to report any problems to your transplant coordinator. Do not take this medication with tacrolimus. Possible Side Effects Flushing. A brief period of warmth and/or redness in your face may occur for 1 to 2 hours after taking cyclosporine. This feeling disappears within a short time. Hair growth. Increased hair on your face, arms, and body is common but usually not a problem. Your hair texture or color may also change. Special bleaching formulations made especially for the face are available and you may also choose to use a cream hair remover. Electrolysis is also an option. Mild tremor of hands. This usually occurs in the first month or two and tends to disappear the longer you take cyclosporine or with a decreased dose. Gum swelling and sensitivity to cold or heat. Good dental hygiene is necessary to keep gums healthy. Hypertension or high blood pressure. Appropriate medications will be prescribed to control your blood pressure. It is important to follow other recommendations to help control your blood pressure such as maintaining normal weight, eating a low salt (sodium) diet and exercising regularly. Elevated serum potassium levels. This is more common after you have been on cyclosporine for a few weeks. You might need to restrict the amount of potassium in your food and beverages. Altered kidney function (or nephrotoxicity ). Laboratory tests are done to monitor your kidney function. If this side effect develops, your dose will be lowered. The transplant staff may ask you to return to the University of Minnesota Medical Center for evaluation. Altered liver function. Symptoms include elevated liver enzymes and bilirubin. Yeast infections in your mouth, esophagus, and stomach. If you have a yeast infection in your mouth, you may notice a white coating on your tongue or inside your mouth, and your mouth may be sore. Gastrointestinal symptoms. Nausea, vomiting, diarrhea and decreased appetite are rare. Rash continued Transplant Medications 9

18 Neurological symptoms:» Numbness, tingling, burning sensation, sensitivity to cold and/or heat in hands and feet are common side effects, but tend to lessen after 1 to 2 months.» You may experience headaches or notice that it s harder to remember things.» Episodes of blackout or seizure are rare and need immediate medical attention and evaluation. 10 SOLID ORGAN TRANSPLANT HANDBOOK

19 Tacrolimus (FK-506) Brand Name Prograf Generic May be prescribed Let your transplant coordinator know if you change from brand to generic, or from one generic to another. Blood Levels Because absorption of tacrolimus is variable, blood levels must be monitored to determine the correct dose. Refer to the Discharge Instructions chapter in this book for information on how to obtain your level and mailers. How Supplied Capsules 0.5 mg, 1 mg or 5 mg Liquid suspension 1 mg/ml Dose» Store at room temperature.» Shake before using.» Check expiration date on bottle.» Measure dose with a syringe. Based on weight Adjusted for lab values and side effects Transplant Medications 11

20 When To Take A.M. dose in the morning with breakfast P.M. dose 12 hours after the morning dose May be taken with food be consistent Try to take your medication at the same time each day. Do not take your A.M. dose on lab days until after your tacrolimus level is drawn. Your level should be drawn as close to 12 hours after your P.M. dose as possible. Missed Dose It is important to take your entire prescribed dose to prevent rejection. If you miss 1 dose:» Take the missed dose as soon as you remember.» If it is time for your next scheduled dose, take 1 dose now, and then wait 4 to 6 hours before taking another dose which will make up for the one you missed.» Do NOT have your tacrolimus level done within 24 hours of changes in dose times. If you miss more than 1 dose, contact your transplant coordinator. Precautions Chemicals in grapefruit, grapefruit juice, and pomelos can alter the way this medication is broken down in your body. Do not have any of these without consulting your transplant coordinator or primary care doctor. Blood potassium levels must be monitored and other medications which increase the potassium level should be used with caution. Diarrhea and constipation will affect your tacrolimus blood level. Be sure to report any problems to your transplant coordinator. Do not take this medication with cyclosporine. 12 SOLID ORGAN TRANSPLANT HANDBOOK

21 Possible Side Effects Mild tremor of hands. This usually occurs in the first month or two and tends to disappear the longer you take tacrolimus or with a decreased dose. Hypertension or high blood pressure. Appropriate medications will be prescribed to control your blood pressure. It is important to follow other recommendations to help control your blood pressure such as maintaining normal weight, eating a low salt (sodium) diet and exercising regularly. Elevated serum potassium levels. This is more common after you have been on tacrolimus for a few weeks. You might need to restrict the amount of potassium in your food and beverages. Altered kidney function (or nephrotoxicity ). Laboratory tests are done to monitor your kidney function. If this side effect develops, your dose will be lowered. The transplant staff may ask you to return to the University of Minnesota Medical Center for evaluation. Gastrointestinal symptoms. Nausea, vomiting, diarrhea and decreased appetite are rare. Rash Neurological symptoms:» Numbness, tingling, burning sensation, sensitivity to cold and/or heat in hands and feet are common side effects, but tend to lessen after 1 to 2 months.» You may experience headaches or notice that it s harder to remember things.» Episodes of blackout or seizure are rare and need immediate medical attention and evaluation. Elevated blood sugar Thinning of hair Transplant Medications 13

22 Mycophenolate Mofetil (MMF) Brand Name CellCept Generic May be prescribed Let your transplant coordinator know if you change from brand to generic, or from one generic to another. Blood Levels It may be necessary to monitor blood levels. Your transplant coordinator will let you know if this applies to you. If it does, do not take the morning dose until after the blood level has been drawn. How Supplied Pill form 250 mg capsules or 500 mg tablets» Do not split tablets or open capsules.» Caregivers should wash hands after touching crushed or broken pills. Liquid suspension 200 mg/ml Dose» Store at room temperature.» Shake before using.» Check expiration date on bottle.» Women of childbearing age should wear gloves when handling.» Caregivers should wash hands after handling liquid. Based on weight Adjusted for lab values and side effects 14 SOLID ORGAN TRANSPLANT HANDBOOK

23 When To Take A.M. dose in the morning with breakfast P.M. dose 12 hours after the morning dose May be taken with food be consistent Try to take your medication at the same time each day. When possible, take 1 to 2 hours apart from any product containing magnesium or aluminum. Missed Dose It is important to take your entire prescribed dose to prevent rejection. If you miss 1 dose:» Take the missed dose as soon as you remember.» If it is time for your next scheduled dose, take 1 dose now, and then wait 4 to 6 hours before taking another dose which will make up for the one you missed. If you miss more than 1 dose, contact your transplant coordinator. Precautions It is very important for female transplant patients to prevent pregnancy while taking this medication. There is evidence that severe birth defects may occur.» Women taking this medication should talk with their transplant coordinator and doctor before planning a pregnancy.» This medication should be stopped several months before becoming pregnant.» Couples should use 2 forms of birth control. Do NOT take this medication with mycophenolic acid delayed release tablets. Possible Side Effects Nausea Vomiting Diarrhea Decreased white blood cell count, platelets, hemoglobin Transplant Medications 15

24 Mycophenolic Acid Delayed Release Tablets Brand Name Myfortic Generic May be prescribed Let your transplant coordinator know if you change from brand to generic, or from one generic to another. Blood Levels It may be necessary to monitor blood levels. Your transplant coordinator will let you know if this applies to you. If it does, do not take morning dose until after the blood level has been drawn. How Supplied Tablets 180 mg or 360 mg Dose» Cannot be crushed» Does not come in liquid form Based on weight Adjusted for lab values and side effects When to Take A.M. dose in the morning with breakfast P.M. dose in the evening, 12 hours after the first dose Try to take your medication at the same time each day. When possible, take 1 to 2 hours apart from any product containing magnesium or aluminum. 16 SOLID ORGAN TRANSPLANT HANDBOOK

25 Missed Dose It is important to take your entire prescribed dose to prevent rejection. If you missed 1 dose:» Take the missed dose as soon as you remember.» If it is time for your next scheduled dose, take 1 dose now, and then wait 4 to 6 hours before taking another dose which will make up for the one you missed. If you missed more than 1 dose, contact your transplant coordinator. Precautions It is very important for female transplant patients to prevent pregnancy while taking this medication. There is evidence that severe birth defects may occur.» Women taking this medication should talk with their transplant coordinator and doctor before planning a pregnancy.» This medication should be stopped several months before becoming pregnant.» Couples should use 2 forms of birth control. Do NOT take this medication with mycophenolate mofetil. Possible Side Effects Nausea Vomiting Diarrhea Decreased white blood cell count, platelets, hemoglobin Transplant Medications 17

26 Sirolimus Brand Name Rapamune Generic May be prescribed Let your transplant coordinator know if you change from brand to generic, or from one generic to another. Blood Levels Because absorption of sirolimus is variable, blood levels must be monitored to determine the correct dose. Refer to the Discharge Instructions chapter in this book for information on how to obtain your blood level and mailers. How Supplied Tablet 0.5 mg, 1 mg, or 2 mg» We recommend using the 1 mg tablets Liquid 1 mg/ml» 60 ml bottle» Refrigerate» Expires 1 month after opening Preparing Liquid Sirolimus Can be taken straight, followed by water or orange juice. It can also be diluted. The solution should be drawn up with a syringe as directed on the box. If diluting:» Place medication into a 6-ounce glass or plastic cup. Do not use a styrofoam cup, as it will absorb some of the medication.» Pour 2 ounces of water or orange juice into the glass and swirl with the medication. Drink the liquid in the cup.» Pour an additional 4 ounces of water or orange juice into the glass and drink again. This will ensure that you get your entire dose. 18 SOLID ORGAN TRANSPLANT HANDBOOK

27 Dose Based on weight Adjusted for lab values and side effects When to Take Take 1 time each day, in the morning May be taken with food be consistent Try to take your medication at the same time each day. Do not take your dose on lab days until after your blood tests are drawn. Your blood level should be drawn as close to 24 hours after your last dose as possible. Missed Dose It is important to take your entire prescribed dose to prevent rejection. If you miss 1 dose:» Take the missed dose as soon as you remember.» If it is time for your next scheduled dose, take it and then take another dose later in the day. If you miss more than 1 dose, contact your transplant coordinator. Precautions Chemicals in grapefruit, grapefruit juice, and pomelos can alter the way this medication is broken down in your body. Do not have any of these without consulting your transplant coordinator or primary care doctor. Use birth control while on sirolimus. No information is available on whether this medication is safe during pregnancy. Contact your transplant coordinator before any surgery. Sirolimus is usually stopped before any surgery and not restarted until you are fully healed. Another medication will be used in its place. continued Transplant Medications 19

28 Possible Side Effects Elevated triglycerides and cholesterol Decreased white blood cell (WBC) and platelet count Decreased potassium Mouth sores Delayed wound healing Elevated blood pressure Rash Muscle pain (usually at higher doses) Diarrhea 20 SOLID ORGAN TRANSPLANT HANDBOOK

29 Everolimus Brand Name Zortress Generic None available Blood Levels Because absorption of everolimus is variable, blood levels must be monitored to determine the correct dose. Refer to the Discharge Instructions chapter in this book for information on how to obtain your blood level and mailers. How Supplied Tablet 0.25 mg, 0.5 mg, 0.75 mg Dose Based on weight Adjusted for lab values and side effects When to Take Take 2 times each day, in the morning and evening, approximately 12 hours apart. May be taken with or without food be consistent. Try to take your medication at the same time each day. Do not take your dose on lab days until after your blood tests are drawn. Your blood level should be drawn as close to 12 hours after your last dose as possible. continued Transplant Medications 21

30 Missed Dose It is important to take your entire prescribed dose to prevent rejection. If you miss 1 dose:» Take the missed dose as soon as you remember.» If it is time for your next scheduled dose, take it and then take another dose later in the day. If you miss more than 1 dose, contact your transplant coordinator. Precautions Chemicals in grapefruit, grapefruit juice, and pomelos can alter the way this medication is broken down in your body. Do not have any of these without consulting your transplant coordinator or primary care doctor. Use birth control while on everolimus. No information is available on whether this medication is safe during pregnancy. Contact your transplant coordinator before any surgery. Everolimus is usually stopped before any surgery and not restarted until you are fully healed. Another medication will be used in its place. Possible Side Effects Nausea Swelling of lower legs, ankles, and feet High blood pressure Constipation Low red blood cell count (anemia) Urinary tract infection Increased fat in the blood (cholesterol and triglycerides) Diarrhea Headache Fever Abdominal pain Low white blood cells 22 SOLID ORGAN TRANSPLANT HANDBOOK

31 Azathioprine (AZA) Brand Name Imuran Generic May be prescribed How Supplied Tablet 50 mg» 25 mg is a half tablet.» 12.5 mg is one-fourth of a tablet. Liquid suspension 5 mg/ml» Refrigerate» Shake before using.» Check expiration date on bottle.» The suspension can be used for 90 days after it has been prepared. Dose Based on your weight and white blood count (WBC) When to Take Take the entire daily dose at one time in the evening. Take azathioprine AFTER dialysis, not before. Missed Dose It is important to take your entire prescribed dose to prevent rejection. If you miss 1 dose:» Take the missed dose as soon as you remember.» If it is time for your next scheduled dose, take it and then take another dose the next morning. If you miss more than 1 dose, contact your transplant coordinator. Transplant Medications 23

32 Precautions Report all symptoms of infection immediately. Use allopurinol (Zyloprim) with extreme caution. It should only be taken under close medical supervision.» It can cause a serious decrease in your white blood count, hemoglobin and platelets. It may be serious enough to require hospitalization and blood transfusions.» Talk to your transplant coordinator before you take the first dose of allopurinol. Possible Side Effects Decreased white blood count Liver toxicity Hair loss. This is usually temporary; hair will grow back while you are still taking this medication. 24 SOLID ORGAN TRANSPLANT HANDBOOK

33 Prednisone Brand Name Deltasone Generic May be prescribed How Supplied Tablets various strengths, typically 5 mg is used Liquid 1 mg/ml or 3 mg/ml Dose» Store at room temperature.» Check expiration date on bottle. Based on weight Adjusted for lab values and side effects When to Take Take as directed with food. For heart and lung transplant patients: it is usually split into 2 doses morning and evening for the first few months after transplant. Missed Dose It is important to take your entire prescribed dose to prevent rejection. If you miss 1 dose:» Take the missed dose as soon as you remember.» If it is time for your next scheduled dose, you can take a double dose IF that combined dose is not greater than 50 mg. Otherwise, wait 4 hours between doses. If you miss more than 1 dose, contact your transplant coordinator. Transplant Medications 25

34 Possible Side Effects Prednisone has many side effects. The side effects are dose related the higher the dose of prednisone, the more you will experience side effects. As the dose is gradually reduced, side effects diminish. The most common side effects, and how to minimize these side effects, are described in this section. Sodium Retention. When your body retains sodium it also retains more fluid. This can cause swelling and an increase in your blood pressure. To prevent these side effects, follow a diet low in salt (see Nutrition chapter in this book for more information). Increased appetite. Prednisone makes you hungry, and if you eat more than you need to satisfy this hunger, you will gain weight. Read the Nutrition chapter in this book or talk with a dietitian for information regarding your ideal weight, food intake, and ways to improve your nutritional status. Increased fat deposits, especially in the face and abdomen and sometimes on the back of the neck. As your prednisone dose decreases, you will gradually notice a reduction in these fat deposits. Increased sensitivity to stomach acid, which can cause ulcers. For this reason, it is important that you take the prescribed ulcer prevention medication. Mood swings or emotional highs and lows Thrush (candida) yeast growth in the mouth or other areas. To prevent thrush, use your antifungal medication as directed. Increased sweating, especially at night. If you have diabetes be sure to check your blood glucose. Do not just assume you have low blood glucose. Increased hair growth on your face, arms, and body is common but usually not a problem. Special bleach formulations made especially for the face are available and you may use a cream hair remover. Electrolysis is also an option. Some people notice a change in the color or texture of their hair. Acne on the face, back, and chest. Wash your skin 2 or 3 times a day. Keep the area as clean and dry as possible. (See General Health chapter in this book.) Bone and muscle problems. Bone/joint problems may occur after your transplant due to prednisone interfering with calcium absorption in the bones. Any joint pain should be evaluated by your primary care doctor. You should also be on calcium supplements after your transplant to protect your bones. Muscle weakness, especially in the thigh muscles. This will improve as your prednisone dose is decreased. Muscle weakness can be improved by doing exercises or walking to strengthen these muscles. Cataracts 26 SOLID ORGAN TRANSPLANT HANDBOOK

35 Blurred vision or decrease in vision. It is possible to experience blurred vision right after transplant, especially while you are taking high doses of prednisone.» We recommend you not change your eyeglass or contact lens prescription for several months after transplant.» If your vision has been improving after an initial deterioration and then you notice an increased blurring or a decrease in your vision again, see your eye doctor (ophthalmologist) IMMEDIATELY. Other problems may be occurring in your eye. Increased blood sugar. Many recipients have an increased blood sugar level after surgery. For most people this level returns to normal within a few days after transplant. If you have diabetes, you may notice higher blood glucose levels when taking high doses of prednisone. Increased sensitivity to the sun. See the chapter on Post-Transplant Complications in this book for recommendations to prevent skin changes and skin cancer. Increased time for wounds to heal Transplant Medications 27

36 Anti-Infective Medicines SMZ-TMP Generic Trimethoprim sulfamethoxazole, TMP sulfa Brand Names Bactrim, Septra Purpose SMZ-TMP is an antibiotic used to prevent certain types of pneumonia and other infections that can be serious for transplant patients. How Supplied Tablets single strength or double strength Liquid suspension Dose» Store at room temperature.» Shake before using.» Check expiration date on bottle. Your dose and frequency depend on transplant team guidelines. If you are using the liquid, 10 ml equals one single strength tablet. When to Take Take it in the morning. 28 SOLID ORGAN TRANSPLANT HANDBOOK

37 Missed Dose Take it as soon as you remember, then resume your regular schedule. Precautions If you do not have a spleen: do not stop taking SMZ-TMP unless you are given an alternative antibiotic such as penicillin. Be sure you have adequate fluid intake throughout the day. Possible Side Effects Liver and kidney toxicity Lowered white blood count Sensitivity to sun, which may cause you to sunburn easily Nausea Vomiting Diarrhea Transplant Medications 29

38 Dapsone Generic Dapsone Brand Names None Purpose This medication is used for treating certain types of infections. It is also used to prevent certain types of infections, including pneumocystis pneumonia, in organ transplant patients. How Supplied Tablet Dose» Store this medication at room temperature away from heat, light and moisture. Your dose and frequency depend on transplant team guidelines. When to Take This medication is typically taken once daily. Missed Dose If you miss a dose of this medicine, take it as soon as possible. If it is almost time for your next dose, skip the missed dose and go back to your regular dosing schedule. Do not take 2 doses at once. Precautions May take with food if causes gastric irritation. Do not stop taking this medication without consulting your physician. 30 SOLID ORGAN TRANSPLANT HANDBOOK

39 Possible Side Effects Blurred vision, Avoid driving until know how this affects you. Sun sensitivity. May cause you to burn more easily. Wear sunscreen. Stomach upset, nausea, vomiting Dizziness Headache Ringing in the ears Sleeplessness Fever May decrease blood counts Transplant Medications 31

40 Valganciclovir Brand Name Valcyte Generic None available Purpose Valganciclovir is an antiviral medication used to treat or prevent cytomegalovirus (CMV), Epstein-Barr virus (EBV), and other viruses. Standard course of treatment can last up to 6 months. How Supplied Tablets 450 mg» Do not break or crush tablets.» Caregivers should wash hands after touching crushed or broken pills. Liquid 50 mg/ml Dose» Store in the refrigerator.» Check expiration date on bottle.» Women of childbearing age should wear gloves when handling.» Caregivers should wash hands after handling liquid. Your dose and frequency depend on transplant team guidelines. The maximum dose is 900 mg in one day. When to Take Usually take 1 time each day. Take with food. 32 SOLID ORGAN TRANSPLANT HANDBOOK

41 Missed Dose If you miss 1 dose:» Take the missed dose as soon as you remember.» If it is time for your next scheduled dose, skip the missed dose and take the dose that is due. Do not take a double dose. Possible Side Effects Decreased blood counts Headache Dizziness Tremor Tingling in hands and feet Vomiting Diarrhea Fever Rash Precautions This medication is eliminated from the body through urine. Women of childbearing age should wear gloves when exposed to the urine of someone taking this medication. Couples must use 2 forms of birth control when either partner has had a transplant and is taking this medication. You will also need to do this for 3 months after you have stopped taking this medication. Transplant Medications 33

42 Acyclovir Brand Name Zovirax Generic May be prescribed Purpose Acyclovir is an antiviral medication used to treat cold sores and genital herpes (herpes simplex virus infections); and to treat chicken pox and shingles (varicella-zoster virus infections). It also helps prevent cytomegalovirus (CMV) infections. How Supplied Capsules 200 mg Tablets 400 or mg Liquid Dose» Doesn t need refrigeration.» Check the label for medication concentration and expiration date. Your dose and frequency depend on transplant team guidelines. Drink plenty of water while taking. Missed Dose Take the missed dose as soon as you remember. If it is time for your next scheduled dose, just take the dose that is due. Do not take a double dose. Possible Side Effects May affect white blood cell (WBC) count May affect blood urea nitrogen (BUN) and creatinine levels 34 SOLID ORGAN TRANSPLANT HANDBOOK

43 Antifungals Possible Medications Some examples of antifungal medications include: clotrimazole troche (Mycelex Troche), nystatin swish and swallow (Mycostatin) Purpose To prevent or treat thrush, an oral form of candida Dose Transplant patients routinely take:» For up to 6 months following transplant» Anytime a high dose of steroids, such as prednisone or methylprednisolone (Solu-medrol), is taken Liquid antifungal medication should be held in the mouth at least 5 minutes before being swallowed. Troches should be held in the mouth at least 10 minutes, then they may be chewed and swallowed. Don t eat or drink anything for at least 30 minutes after taking these medications. When to Take Take 3 to 5 times a day after each meal, in the middle of the afternoon, and before going to bed. Dose and frequency depend on transplant team guidelines. Missed Dose Take as soon as you remember. Precautions If you wear dentures, remove them before taking these medications. These antifungal medications are only effective when in contact with the tissues. If you eat or drink right after taking them, you wash away the medication and its effect. Be sure to brush teeth 30 to 60 minutes after taking nystatin liquid to prevent teeth from decaying. This is especially important after the dose you take before going to bed. Possible Side Effects Nausea Vomiting Diarrhea Transplant Medications 35

44 Ulcer Prevention Medications Possible Medications Some examples of ulcer prevention medications include: esomeprazole (Nexium), lansoprazole (Prevacid), omeprazole (Prilosec), pantoprazole (Protonix), rabeprazole (Aciphex) Purpose Ulcer prevention medications reduce the amount of acid secreted into your stomach. This can prevent stomach upset or heartburn and help limit the irritation caused by other medications. If you take an ulcer prevention medication and still have times of discomfort, it is okay to use an over-the-counter antacid, like Tums, for immediate relief. Dose Dose may vary depending on the medication you are taking. Most patients benefit from a single dose, but sometimes an evening dose is added. Take according to instructions from pharmacy. Your primary care doctor may adjust or discontinue this medication. Missed Dose Take it as soon as you remember, then resume your regular schedule. Possible Side Effects Headache Constipation Itching Rash Nausea Diarrhea 36 SOLID ORGAN TRANSPLANT HANDBOOK

45 Cholesterol-Lowering Medicines Possible Medications Some examples of cholesterol-lowering medications include: amlodipine/atorvastatin (Caduet), atorvastatin (Lipitor), lovastatin (Mevacor), niacin/lovastatin (Advicor), pravastatin (Pravachol), rosuvastatin (Crestor), simvastatin/ezetimebe (Vytorin), simvastatin (Zocor) Precautions Tell your transplant coordinator if you start taking a cholesterol-lowering medication. If any doctor prescribes a cholesterol-lowering medication, you will need blood tests to monitor your liver function. Grapefruit may also increase levels of some lipid lowering agents, especially atorvastatin. Possible Side Effects Muscle pain or aches tell your primary care doctor if you notice these. Stomach ache Diarrhea Constipation Liver problems Transplant Medications 37

46 Non-Steroidal Anti-Inflammatory (NSAID) Medications Possible Medications Some examples of NSAIDs include: Advil, Aleve, Anaprox, Ansaid, Celebrex, Clinoril, Diclofenac, Duract, Etoldolac, Felden, Fenoprofen, Flurbiprofen, Ibuprofen, Indocin, Indomethacin, Ketoprofen, Ketorolac, Lodine, Meclofenamate, Meclomen, Motrin, Nabometone, Nalfon, Naprosyn, Naproxin, Orudis, Orudis K1, Oxaprozin, relafen, Sulindac, Tometin, Tolectin, Toradol, Votaren. Purpose NSAIDs relieve pain, swelling, and joint pain. Precautions You must talk to your primary care doctor or transplant coordinator before taking any NSAID. Have your labs checked 3 to 4 days after starting an NSAID. These medications can harm your kidneys. Possible Side Effects Stomach irritation with symptoms of nausea, vomiting, heartburn, upset stomach. Take with food or milk. Allergy with skin rash and hives Ringing in the ears, dizziness, headache Increased creatinine and kidney damage 38 SOLID ORGAN TRANSPLANT HANDBOOK

47 Other Medicines Acetaminophen Brand Name Tylenol Generic May be prescribed Purpose Decreases pain from any cause and decreases temperature or fever Dose Follow label instructions for doses or consult your primary care doctor. Precautions For fevers greater than 101 degrees Fahrenheit, call your primary care doctor before taking acetaminophen (Tylenol). In addition, call your transplant coordinator during the first 3 months after transplant. This medication can reduce a fever and may inadvertently cause you to delay seeking important medical care. Possible Side Effects Rash Potential blood count abnormalities Increased bilirubin Increased alkaline phosphatase Transplant Medications 39

48 Acetylsalicylic Acid (ASA) Brand Name Aspirin Generic May be prescribed Purpose Aspirin decreases the ability for platelets to stick together and therefore helps prevents blood clots. It is sometimes prescribed for transplant patients to prevent blood clots. Some people take it to prevent heart attack and stroke. While this medication reduces pain, it is not recommended for transplant patients for this purpose. When to Take Always take aspirin with a full meal and a full glass of water. Aspirin usually needs to be stopped before biopsies. Ask your transplant coordinator. Missed Dose Take the missed dose as soon as you remember, but not if it is time for your next dose. Do NOT take a double dose. Precautions Report bruising or blood in your urine or sputum immediately. Do not take aspirin if you are taking warfarin (Coumadin) or another blood thinner unless directed. If you were taking aspirin on a regular basis before your transplant, ask your primary care doctor if you should continue to take it after your transplant. Many common over-the-counter medications contain aspirin, such as: Alka-Seltzer, Anacin, Arthritis Pain Formula, Ascriptin, Aspergum, Bufferin, Ecotrin, Excedrin, PeptoBismol, and many cold medications. Be sure to check with the pharmacist if you are uncertain about a specific product. 40 SOLID ORGAN TRANSPLANT HANDBOOK

49 Possible Side Effects Stomach upset or pain Ulcers with bleeding These symptoms usually occur only at high doses: Ringing in ears Difficulty hearing Dizziness Transplant Medications 41

50 Laxatives Possible Medications Some examples of laxatives include: bisacodyl (Dulcolax), docusate sodium or DSS (Colace), Fleet brand enema, psyllium, reguloid (Metamucil), Milk of Magnesia, Senna (Senakot) Purpose Laxatives help prevent constipation (hard stools or difficulty having a bowel movement). Precautions It is better to prevent constipation than to treat it. See the General Health chapter in this book for recommendations on how to prevent constipation. If you have pain in your stomach, DO NOT use a laxative without talking to your primary care doctor first. Keep your transplant coordinator informed of the laxatives you use regularly. How to Take Many laxatives are available in your local medication store. Some are safer than others for frequent use, such as: Bisacodyl a mild laxative available in tablets or as a rectal suppository. Docusate sodium a stool softener that works by drawing more fluid into the stool to make it softer. You will need to drink plenty of water when taking this laxative. Fleet brand enema contains 4 ounces of enema solution in a plastic squeeze bottle.» Never use without first discussing it with your primary care doctor.» Never use when you are experiencing nausea, vomiting, or abdominal cramping.» Frequent or prolonged use of enemas may cause electrolyte changes, irritate the bowel, or result in dependence. Psyllium furnishes bulk that promotes natural elimination. Be sure to mix with a full glass of water. Milk of Magnesia a good laxative to treat mild constipation. Take 1 or 2 tablespoons as needed. Senna a mild laxative available in tablets. 42 SOLID ORGAN TRANSPLANT HANDBOOK

51 Discharge Instructions Chapter Two Kidney, Pancreas or Liver Organ Transplant Discharge Checklist I understand my medications. I know why I am taking them and when I need to take them. I have a current and accurate medication list. I have attended the medication and discharge Patient Learning Center classes. I have received a copy of the Transplant Medication Training DVD. I know what pharmacy I will use after I go home. I have blood pressure monitoring equipment, a thermometer, and a scale at home. I have read my Transplant Patient Handbook. I have a Keeping Track of Lab Values and Vital Signs log book and have been shown how to use it. I have made arrangements with a lab to draw my blood tests. I am aware if home health care has been arranged. I have enough supplies to manage until a home health nurse visits me (may not apply). I have been given lab letters by my transplant coordinator. I have been given mailers for my medication levels, if needed (transplant coordinator will give.) I have been given FedEx mailers, if needed. I have a urine collection container and a hat to catch my urine (applies only to pancreas patients with bladder drainage). I know when and where to go for my first post-discharge clinic appointment(s). Date/time: Location: I have an appt to have my stent removed. (May not apply.) I know who my coordinator is and his/her phone number. Name: Phone Number: I have my discharge orders. I know how to reach the on-call coordinator in case of an after-hours emergency. Discharge Instructions 43