Your Heart TransplantPATIENT & FAMILY EDUCATION BOOK
This book was prepared by the Heart Transplant office at Tampa General Hospital. We gratefully acknowledge the following people: Jane Adair Sjonne Mabbott Lori Anderson Jessica Moret Sue Barrett Kerry Ryan, CCTC Vianhi Bonner Mary Seaman, CCTC Judy Dery Ginger Sims Lisa DiChiara Marnese Smartt-Cruz Brenda Farlow Debbie White Lisa Head Diane Jimenez Gene Coppola Laurie Joughin Melissa Liles * CCTC (Certified Clinical Transplant Coordinator)Typing, layout and graphics were lovingly prepared by Elizabeth Ryan. Our deepest thanks to her for putting polish on our “vision,” placing it on paper...and making it look wonderfully professional. Elizabeth is the wife of Harry Ryan...one of our heart transplant recipients. Harry was transplanted here at Tampa General Hospital on October 26, 1996, after an extensive wait in CCU. Harry and Elizabeth are both doing very well post-transplant. They currently reside in the Florida Keys, where they enjoy fishing in the back country on their boat, “Second Chance.” Elizabeth would like to dedicate her work on this book to the donor and the family who made it possible for her and Harry to have a “Second Chance” at life.
Why Choose Tampa General Hospital The first successful cardiac transplant surgery in Florida wasperformed at Tampa General Hospital on June 6, 1985. As of December 2004, 666 heart patients have undergone a heart transplant at our hospital. The one-year survival rate for heart transplantation is 86.2% and the five-year survival rate is 72.7% at Tampa General Hospital.
2 Pre-EvaluationWhat is heart failure?The body needs a certain amount of blood to function normally. The amount of blood and oxygenneeded changes when a person is resting or exercising. Heart failure means that your heart cannotsupply enough blood and oxygen to your body. Sometimes heart failure is called “congestive” or“chronic” because it is associated with fluid buildup, or has been present for a long period of time.Heart failure is a condition that is very different from a heart attack. A heart attack occurs suddenlyand is painful. On the other hand, heart failure occurs over a long period of time and causes limita-tions in your lifestyle rather than pain. Having heart failure does not necessarily mean that youhave had a heart attack or are going to have one.It is common to feel upset, depressed or even angry about your illness. There are approximately 2-4 million Americans with heart failure. Don’t let your heart failure bring you down. The attitudethat you have determines how you feel. A positive attitude can help you live better with heart fail-ure. It is very important to share your emotions and fears with family and learn about strategies tomanage your illness.Symptoms of Heart Failure I Fatigue — Mild heart failure is often mistaken for “growing old.” The tiredness often lasts for long periods of time. It is not unusual to feel like sitting down rather than taking a walk. I Shortness of breath (especially while lying flat or during exercise) — Most patients describe this as feeling as if they are not getting enough air. At times, the shortness of breath will cause you to get out of bed at night for relief. While some people experience this “too little air” feeling, others complain of a dry or hacking cough at night. It may be more comfortable to elevate your head on several pillows. I Loss of appetite/nausea — You may lose your appetite or become nauseated because you feel full as a result of fluid buildup in your digestive organs. I Swollen ankles — Swelling occurs after you have been sitting or standing all day. You may notice that your shoes are tighter and your ankles are puffy. I Weight gain — Gaining weight over several days in a row may be one of the earliest signs of fluid buildup in your body. You are instructed to call your physician or coordinator if you have a weight gain of more than 3-5 pounds in two days. I Reduced daytime urination — Blood is taken away from the kidneys to help the rest of the body get the amount of nutrients it needs. I Increased nighttime urination — When the body is at rest, the blood can return to the kidneys and be filtered and removed as urine.What you can do about heart failureYou are part of a team of doctors, nurses and other professionals. It is important for you to help theother members of the team as they will also help you. It is important to follow all instructions care-fully and keep your follow-up appointments. At these appointments, you can getyour questions answered about treatments, report problems with your medications, and areobserved for relief of your symptoms with the treatments. Diet, fluid restriction, rest and exerciseare very important in the management of your illness.
3 Diet Good nutrition is important for everyone, especially people with heart failure. The basics of the diet are to limit salt, cholesterol and fats. It is also necessary to maintain potassium in your diet. People with reduced heart function should always restrict salt. A high salt (sodium chloride) intake usually means high blood pressure, which means more work for your heart. The excess salt causes your body to retain water and cause swelling and worsened symptoms. Lowering your sodi- um intake means cutting down on salt as much as possible, but it doesn’t mean cutting out flavor. By making small, gradual changes, you’ll soon learn to appreciate unsalted foods. Limit your sodium intake to 2000 milligrams (mg) per day. This is about the amount of salt in a teaspoon. Your doctor will recommend a sodium level that is best for your own needs. Reducing your intake of salt can be accomplished in many ways. The first, and easiest way is to take the salt shaker away. Keep it out of your reach — maybe even throw it away. There is already enough salt in natural and processed foods. To add flavor to foods, use low salt seasonings such as allspice, chili powder, dill, lemon, onion, etc... Always check with your physician before using a “salt substitute” or “lite salt” since these may have extra potassium that may or may not be appropriate for you. When cooking, use fresh vegetables and foods instead of canned or processed foods. These foods are naturally flavorful and low in sodium. Become a label reader and keep an eye on sodium. If no amounts are given, look at the ingredient list. Ingredients listed first are in the highest amounts, so salt should be at the end of the list. Avoid processed, convenience or “diet” foods. These foods often contain hidden salt as a preservative or flavor booster. Examples of these foods are cold cuts, pickles, canned or dried soups, instant puddings, microwave entrees, and frozen dinners. Canned vegetables are also high in sodium. Switching from canned peas to frozen ones will save almost 250 mg of sodium per serving. If you must use canned vegetables, try low-sodium versions or rinse the foods thoroughly with water in a colander to remove some of the salt. The coordinators’ office has a list of foods and their sodium values available for further information. A diet with adequate potassium is also important. Potassium assists the body to grow and function by maintaining the electrical stability of your heart and nervous system. The normal balanced diet contains adequate amounts of potassium. It is important to get potassium every day because it is eliminated by your body on a daily basis. The most common cause of potassium loss is the use of diuretics, or “water pills.” Also, vomiting, diarrhea, excessive laxative use, and some medications can cause potassium loss. Dietary sources of potassium include bananas, cantaloupe, grapes, baked potatoes, avocado, flounder, prunes/juice, and dates/figs. In individuals with kidney damage or kidney failure, excessive potassium can be harmful and even deadly. Check with your doctor concerning the limitations, if any, on your potassium intake. Fluid Restriction Any pump (that’s what your heart is!) needs a certain amount of fluid to prime it and run effectively. If there are problems with the pump - like heart failure - the pump may not run as effectively with too much fluid present. This is why it is essential that you monitor and limit your fluid consumption. Fluid is anything that melts or is in liquid form. This includes water, juices,
4soda, ice cream, popsicle’s, ice, Jell-O, and even large amounts of some particularly juicy fruits suchas grapes and watermelon. Please speak with your doctor regarding your exact fluid limit. Theaverage is about 1500 cc or about 2 quarts in a 24-hour period. Remember to choose your fluidswisely since they are limited. This is one of the most important steps in managing your heart failure.Often lasix or another diuretic (“water pill”) is given to remove fluid. Many people mistakenlythink that if they are putting out a lot of urine, they need to replace that volume with fluid that theydrink. The diuretic is doing its job by removing fluid to keep the pump “lean.” If you add morefluid to this, you are defeating the purpose of taking the pill. Weight Control Overeating and being overweight are added risks if you have heart failure. Everyoneovereats at times and the body’s response is to work overtime to digest the food. When you haveheart failure, the extra work needed for digestion can limit the amount of blood available for otherfunctions. It is at these times that you may feel particularly tired or short of breath.Being overweight also means extra work for your heart. The added weight puts an enormousamount of strain on your heart. Being as little as 10% overweight is a big problem for a weakenedheart. It is not only important to lose the extra weight, but also to be monitored closely by a physi-cian.A diet will be more successful if it is realistic. Do not expect to lose the weight quickly — you didnot gain it quickly. The following are some tips to help you in reaching your goal. Eat smallermeals more often, being sure to include plenty of vegetables, fruits and grains. If necessary, mea-sure or weigh portions to keep the size down. Also, reducing fat will aid in your weight loss, not tomention helping your cholesterol level. When cooking meats, do not fry the foods, instead broil,poach, or bake using a variety of seasonings.The act of starting a diet is the most difficult. After losing a little weight, you will feel better aboutyourself and your health. The more you lose, the more your body and outlook will improve. Rest Heart failure patients need to stay active. By severely restricting physical activity you canreduce your stamina so that even a short walk may seem too difficult. By exercising regularly andkeeping your body conditioned, you will feel better and be able to exercise longer. Although it isimportant to stay active, your body also needs rest. Regular periods of both rest and exerciseshould be scheduled into your day. Extra rest also helps during periods of emotional stress orillness. If you listen to your body, you will know when it needs rest or activity.
5 Heart failure symptoms may keep you from getting a good night’s sleep. Patients often complain of waking up tired or having difficulty breathing when lying. Also, the urge to urinate may interrupt your sleep. Here are some tips for getting sleep: I Use pillows to prop up your head to make breathing easier I Avoid eating a big meal before going to bed — your body is too busy digesting food. I Consult your physician about changing the times of your medication. For example, if you are taking a “water pill” late at night, that may be causing you to miss sleep due to the need to urinate. I Avoid naps in the evening since they can disturb your ability to fall asleep. Additionally, sexual activity, like most physical activity, means added work for your heart. However, in most cases of heart failure, sex does not have to be limited or eliminated. Sex will not worsen your heart failure. It is important to have an open discussion with your spouse and physician about any concerns you may have. Please discuss any exercise program, diet, or sleeping problems with your physician first. In some cases, a supervised exercise test (called a stress test) will need to be performed before you start a home exercise program. Occasionally, a doctor may also feel that a specific exercise is not right for you because of a problem or condition. Medications It is expected that you will make and keep current a list of your medications. This is your responsibility and is essential “practice” for your life, after transplant. Also, you will need to weight yourself daily and keep a daily log of your blood pressure and any other notes to help us with your care. Sheets to assist you can be found in the back of this book. Your coordinators can help you make a medication list but remember... it is up to you to maintain this list. Please bring your medication list, blood pressure logs and any questions you may have to each clinic visit.
6 Reasons For Needing A Heart TransplantMost transplant candidates suffer from a failing heart. There are a number of reasons for a hearttransplant. They include: Cardiomyopathy: Weakness of the muscle of the heart. Myocarditis: An infection, usually caused by a virus, that inflames the heart muscle. Advanced Coronary Artery Disease: Narrowing coronary arteries may be caused by heavy alcohol consumption, smoking, high fatty or high cholesterol diet. Myocardial infarctions (heart attacks) create a small area of scar tissue that replaces functioning heart muscle.Generally potential heart transplant recipients are referred to Tampa General Hospital when acardiologist finds that their heart function is declining, despite increasing medications, andmodification in lifestyles.Criteria For Heart Transplant At Tampa General Hospital 1. You must be less than sixty-nine years of age prior to being listed on the waiting list for a heart transplant. 2. There can be no evidence of active infections, or cancer at the time of transplant. 3. There can be no evidence of extensive disease affecting the arterial circulation to the brain or legs, because significant underlying disease in the major arteries diminishes the chances of long-term survival. 4. You must be psychologically suitable, must understand the risks and requirements for taking medications, and must be committed to participating actively in the rehabilitative process. 5. You must be free of alcohol and/or tobacco use for at least three months prior to transplant listing, and remain abstinent during all phases of transplantation. 6. You cannot be obese. Your weight must be proportionate to your height.
7 Evaluation For A Heart Transplant You must be evaluated by our multi-disciplinary team to be considered for a heart transplant. Prior to formal evaluation for a heart transplant, your medical insurance coverage for transplant expenses will be verified. The majority of your evaluation tests can be performed by your primary care doctor if you are well enough to have tests performed on an outpatient basis. These results must be faxed to Tampa General Hospital, in order for members of the transplant team to review them. After reviewing your records, you may be asked to have additional tests performed. Pretransplant Testing Chest X-ray:This will tell your doctors if your lungs and respiratory tract are healthy, and will determine the size of your heart. Electrocardiogram (EKG or ECG): This will reveal how well your heart is working and may reveal heart damage that was previously unsuspected. Treadmill Test: This will reveal the functional capacity of your heart during exercise. In other words, it determines the ability of your heart to do work. Blood Tests: Your blood count, blood and tissue type, blood chemistries, liver and immune system will all be checked. Pulmonary Function Test: You will be asked to breathe into a tube attached to a measuring device, which will reveal how well your lungs are working. A blood test will be taken to determine your blood’s capacity to carry oxygen. Right Heart Catheterization: A small catheter (a flexible tube) placed into your heart will be used to measure the effects of heart failure on your heart and blood vessels in your lungs. Muga:A small amount of tracer solution is injected into a vein. A special camera tracks the movement of the tracer solution to determine heart movement and pumping strength. Echocardiogram: This test will also tell how well your heart is working, and the size of your heart chambers as well as the condition of your heart valves. During this test, a probe or transducer is placed on your chest using lubricating jelly. Pictures are taken of your heart functioning. Pulmonary Stress Test (VO2): This test looks at heart and lung functions. You will be asked to walk on a treadmill, attached to a breathing monitor. This test determines if you have other limitations to exercise, besides your heart. Arterial/Carotid Dopplers: This test helps to identify any blockages in your lower extremeties and/or carotid arteries. The probe used in this test is similar to the probe used in the echocardiogram. Mammogram/Pap Smear: A gynecological exam will be performed on all women who have not had recent testing. If you have had a recent pap test or mammogram, please obtain these results and bring them to clinic for your transplant cardiologist to review.
8Lab Tests & Purpose Problems with Factors That CanNormal Values Abnormal Results Change Your ResultsWhite Blood count (WBC) Tells how many infection Low level: can mean too few Some medicines like Imuran(4500 - 11,00/cu mm) fighting cells (white blood infection-fighting cells. and intravenous Acyclovir cells) are in the blood. High level: means you may can lower your white blood have an infection. cell count, while others like Prednisone can elevate it.Hematocrit (Hct) Tells how many oxygen Low level: can make you ane- A lot of bleeding can make(36.0 - 46.0%) carrying red blood cells mic, tired and short of breath. your hematocrit go down; are in the blood. High level: can make your blood transfusions make blood thicker and cause your hematocrit go up. problems with clotting.Platelets (Plt) Tells how many cells that Low level: you may bleed Liver disease and some med-(150,000 - 350,000/cu mm) make your blood clot more easily. ications can cause problems (platelets are in the blood). High level: can make your with the platelet count. blood very thick and may require that you take a blood thinner.Potassium (K+) Tells how much potassium Low level: possible problems Kidney failure can increase(3.5 - 5.0 mEq/L) is in the blood. Potassium with the heart beat. the level, high levels of acid helps the heart and other High level: possible problems in the blood can increase the muscles work well. with the heart beat and too level. Often seen with pan- much acid in the blood. creas transplants. Sodium bicarbonate is used to lower this level; diuretics can cause low levels.Carbon Dioxide (CO2) Reflects the acid balance in Low CO2 means too much Kidney failure or pancreas(24 - 30 mEq/L) your blood. acid in your blood. Can transplants can decrease the make you feel tired and level; sodium bicarbonate short of breath. tables can increase the level.Blood Urea Nitrogen BUN and Creatinine High level: may mean that High levels can result from(BUN) indicate how well a kidney the kidney is not functioning kidney failure; high drug(7 - 22 mg/dl) is functioning. properly. levels of CyclosporineCreatinine (Cr) (Sandimmune, Neoral) and(0.5 - 1.2 mg/dl) Tacrolimus (Prograf) in the blood, or organ rejection; a diet high in protein can increase the BUN.Magnesium (Mg) Tells how much magnesium Low level: can cause muscle Medicines like Cyclosporine(1.3 - 2.0) mEq/L is in your blood. Your weakness, sleepiness and and Tacrolimus can cause body needs magnesium problems with the heartbeat. your magnesium level to go to carry out many of its down. Magnesium Oxide daily functions. helps to keep the level normal; Cipro (antibiotic) can affect the absorption of magnesium, so it should be taken two hours before the magnesium.
9 Lab Tests & Purpose Problems with Factors That Can Normal Values Abnormal Results Change Your Results Total and Direct Bilirubin Tells how well the liver High level: may mean that the Liver failure causes the levels (0.2 - 1.2 mg/dl) Total is working. liver is not working well. to rise as the sick liver cannot (0.0 - 0.4 mg/dl) Direct remove the bilirubin, which is a waste product from the blood. AST or SGOT (0 - 35 IU/L) Tells that there may be High level: these enzymes Liver failure increases these ALT or SGPT (0 - 31 IU/L) damage to the liver, heart are released into the blood levels; especially ALT or GGT; Alk Phosp. (30 - 120 IU/L) or bones. if there is damage to the the bone disease that occurs GGT (8 - 51 IU/L) liver or bones. Damage with kidney failure can LDH (0 - 220 IU/L) can be a result of rejection increase the alkaline phos- or certain medicines. phatase; certain medicines such as Imuran can cause AST and ALT to go up. PT (11.2 - 13.6 sec) Tests the clotting function of High level: may mean that Liver failure can cause PTT (20 - 31 sec) the blood your blood is not able to clot your blood to not clot well. or stop bleeding well. Liver Medicines like Coumadin failure and medicines can and Heparin are used to cause this problem. make the blood thin and cause high levels. Cyclosporine Level, Tells how much Cyclosporine Low level: can increase the You should always have your Whole Blood HPLC or Tacrolimus is in the blood. risk of rejection. blood drawn 12 hours after (150 - 300 ng/ml) or Both of these medicines High level: can cause problems your last dose for the best Tacrolimus Level, Whole prevent rejection. with other organs in the results based on a twice-a-day Blood TDX (6 - 15 ng/ml) body like the kidneys and dosing regimen. Any earlier increases the chance of might make the level high; infections. later might make it low. Glucose (blood sugar) Tells how controlled your Low level: can make you Acute stress such as surgery Fasting (70 - 115 mg/dl) diabetes is. feel faint, cause sweating, or infection, intravenous flu- nervousness, fast pulse and ids with sugar, and steroids a headache. can all cause glucose to go High level: can cause problems up. Too much insulin can such as excessive thirst, cause the glucose to be too fatigue, hunger and weight low; exercise, severe cold, loss, and can mean your high fever and a poor diet can transplanted pancreas is not lower the blood sugar level. working as well as it should. Cholesterol (fat-like Tells whether there is a High level: can cause narrow- Eating fatty foods up to 12 substance) (<200 mg/dl) problem with the liver. ing or blockage of blood hours before the test may Tells whether you are at vessels which may lead to cause a high level. A fasting higher risk for having a a heart attack. When the liver state is often required; certain heart attack. is not working well, the level diseases such as diabetes may be low. elevate the level; medicines such as Prednisone and Cyclosporine may increase the level; diet and exercise will lower the level; bile tube problems such as blockage can cause a high cholesterol level. Urine Culture Tells if there is bacteria Infection in your urine can It is important to clean causing infection in cause burning when you yourself well when obtaining your urine. urinate; frequent urination; urine samples to get an change in color and odor of accurate result. your urine. 24-Hour Urine Tells us how well your Low level: may indicate Decreased blood flow to the Creatinine Clearance kidneys are able to clear cellular damage to kidneys, due to heart failure chemicals from your blood. your kidneys. can alter this test.
10 Transplant Team MembersOnce all of your records and results are obtained, a transplant coordinator will call you to set up anappointment for the Transplant Team members to meet with you, discuss transplant and determine ifyou would benefit from a cardiac transplant. Your Transplant Team consists of the following members:YOUR TRANSPLANT SURGEONThis physician you will be meeting is one of several transplant surgeons qualified to perform hearttransplants. He or she will determine if previous surgeries or any other health problems mighthinder a heart transplant. A member of the cardiac surgical transplant team will perform theactual transplant surgery.YOUR TRANSPLANT CARDIOLOGISTYou will see this doctor often during your hospital stay. Each day, he or she will examine you,check your test results, and adjust your medication as needed. Again, be sure to alert yourphysician to any change in the way you feel, no matter how insignificant. And remember…your doctor expects you to ask questions, so don’t be shy!Your transplant cardiologist will also play an integral part in your follow-up care after you leavethe hospital.YOUR TRANSPLANT COORDINATORThis team member, a registered nurse, will have two key responsibilities. First, he or she willcoordinate all the events leading up to and following your surgery. These include: schedulingyour pretransplant testing, working with LifeLink (an organ procurement organization), obtainingyour donor heart, contacting you once a heart has been found, and making sure you have properfollow-up care. Second, your coordinator will teach you how to take care of yourself both beforeand after the transplant, including how to take your medication and when to return to TampaGeneral Hospital for follow-up visits.YOUR TRANSPLANT NURSEThis nurse will help coordinate the activities of your other care givers, as well as tending to yourneeds during your hospital stay and preparing you for discharge. Your nurse will also keep thelines of communication open between you and the other members of the Transplant Team.YOUR DIETITIANFollowing your doctor’s orders, a registered clinical dietitian will create a special diet that will helpyou to stay healthy and avoid excessive weight gain before and after your surgery. This diet willprobably include limits on fluid intake, and encourage low fat, low cholesterol, and very lowsodium. The dietitian will also be able to give you information on reaching or maintaining yourtarget weight range, as well.If you would like to see a dietitian after your surgery, just ask your nurse on the transplant floor.The dietitian can also continue to work with you after your release from the hospital.Follow the diet plan prepared for you, and take advantage of the pointers that your dietitian offers.Proper nutrition can speed your recovery and help you stay healthy!
11 YOUR PHARMACIST Medication will become a regular part of your life before and after your surgery, so get to know your local pharmacist. He or she can tell you everything you need to know about the drugs you will be taking, including the immunosuppressive medications that will help prevent your body from rejecting your new heart. Don’t hesitate to ask questions! YOUR INFECTIOUS DISEASE PHYSICIAN Remaining infection-free is an integral element of your transplant. This physician will determine what antibiotics to give you before surgery, and what antibiotics to give you if you should develop an infection. YOUR SOCIAL WORKER He or she will link you to services and people in the community who can help with your recovery after you leave the hospital. If you need help at home, your social worker can arrange it. He or she also can advise you about Medicare, Medicaid and other insurance coverage. WHERE YOU FIT IN Once again, you are the most important member of your Transplant Team. To a certain extent, all the other team members will try to respond to your cues. Your physical, emotional and practical needs will help them to shape your personalized pre-and post-transplant treatment program. MEDICAL REVIEW BOARD Once the members of your Transplant Team have had a chance to meet you, your medical information will be presented to the Medical Review Board. The Medical Review Board consists of a transplant medical director, infectious disease doctor, cardiologist, cardiac surgeon and transplant coordinator. The Medical Review Board discusses your case and determines if your best medical option is a heart transplant. When the Medical Review Board reaches a decision, you will be notified. If you are found to be a medically appropriate candidate for a heart transplant, then your insurance carrier MUST provide authorization for you to be placed on the heart transplant waiting list. This may take several days. If you have not already had blood drawn to determine your donor matching needs, you will have to give blood samples at this time. Activation If you are an acceptable medical candidate, you will be sent a pager or “beeper” and instructed to keep the beeper with you and turned on 24 hours a day. You may get many false alarms. If a heart is offered for you, the coordinator on call will phone your home. If you are not at home, you will be called on your cell phone or paged. Dial 1-800-505-7769 (press #1) and ask the operator to page “The Heart Transplant Coordinator on Call”
12When you get the call (or beep) from the hospital that a donor heart has been located, you willneed to be admitted to the hospital as soon as possible. The transplant coordinator will tell youwhere to go at that time.Remember: Do not eat or drink anything once you receive the call. Bring a list of all your medica-tions and allergies with you.This is a very exciting time for you, your family and all members of the heart transplant team.It is normal for you to feel anxious and nervous when you receive the call that a heart hasbeen offered to you.We recommend that in anticipation of a heart offer that you have the following prepared: 1. A bag packed with personal items you will want to have while hospitalized (for example slippers, shaver, eye glasses, toothpaste/brush). 2. A designated driver who will drive you to Tampa General Hospital. 3. A friend or family member that is designated as the “hospital contact person” who will be able to notify your friends and family that you are going to Tampa General Hospital for your heart transplant.A FEW “PAGER POINTERS”: 1. Change batteries every three months. 2. Check the pager weekly by paging yourself to ensure that the beeper works. TRAVEL If you are accepted for transplantation, and need to travel somewhere your pager doesn’treach, please call the office and leave a number where you can be reached and approximatetraveling time to Tampa General Hospital.If you are an acceptable medical candidate, and you are placed on the heart transplant waiting list,you will be listed as one of the following:Status 1A are patients who must be in an intensive care unit and require intravenous medication,or require a device to assist heart function.Status 1B are patients on lower doses of intravenous medications at home or in the hospital.Status 2 are all patients who are waiting on the heart transplant list. The average waiting time fora status 2 is at least a year.
13 You are matched to a donor based on your blood type, height, and weight. If you are an acceptable medical candidate and you are placed on the heart transplant waiting list as an outpatient, you will be seen in the heart transplant clinic by your transplant cardiologist every 4-6 weeks. A right heart catheterization is performed every 3-6 months to evaluate your pulmonary artery pressures. If you require continuous infusion of intravenous drugs to help your heart, you will need to be seen once a week. If your symptoms of congestive heart failure become worse and you need to be hospitalized, please ask your local doctor to call the Heart Transplant Office. If your local doctor and your transplant cardiologist feel that your condition warrants your status be changed to a status 1, then you will be transferred to Tampa General Hospital. If you require continuous infusion of intravenous drugs to help your heart, you will need to be seen once a week. Even though you are activated on the transplant list, you may be removed from the transplant list temporarily or permanently due to any of the following: I Your condition improves and you no longer need a heart transplant. I Your condition changes where you no longer meet criteria for transplantation. When a person’s condition is so critical a transplant may not be a guarantee of survival or any quality of life. I You are non-compliant with the instructions from your transplant physician or transplant team member. I You have changes in your insurance as it relates to transplant coverage.
14It is your responsability to review your transplant coverage with your insurance carrier. I If your insurance carrier or level of transplant coverage has or will change, you must inform the transplant office immediately. I A “pre-authorization” from your insurance for your visits and transplant surgery must be current and accurate at all times. If the pre-authorization is not done because you have neglected to tell us important information, you will be responsible to pay “out of pocket” for charges not covered by insurance. This could be several thousands of dollars.It is your responsibility to be aware of and to review your transplant medication coverage. I Immunosuppressive medications are very expensive ($1000-$2000 per month). Some insurance policies have an annual or lifetime maximum coverage for these medications. If your insurance coverage will fall short, then we need to be notified in order to help you look for alternative ways for you to obtain your medications.You may be asked to consider participation in a transplant research study. I Research studies have been conducted at this center that look at new medications, new equipment or new use of familiar medications. If you meet enrollment criteria for any of these studies, you may be asked to volunteer. You will receive a detailed explanation of the purpose of the study, benefits and risks to you.You may be asked during the waiting period if you would consider accepting a donor withhepatitis C. I If your physical condition reaches a level when this might be considered, your cardiologist or an infectious disease specialist will speak to you about the benefits and risks associated accepting this donor organ.
15 Before Surgery After you are admitted to the Coronary Care Unit, you will be asked to sign one or more consent forms, giving your doctors permission to carry out the surgery, and a complete history and physical examination will be conducted. The Transplant Team wants to make certain that your state of health has not changed since your evaluation and that there are no contraindications to performing heart transplant surgery. This means a few more interviews will be done by various members of your Transplant Team. The questions may seem repetitive; try to be patient. In addition, routine chest x-rays, ECG and blood tests will be performed. If any sign of active infection or a significant medical problem is detected, surgery will be canceled. If you are able, you will be asked to scrub your body from chest to feet. You will be shaved from your chin to your knees. This is done to remove any germs and to prevent infection. Of course, if you are not able to do this, the nurse on the floor will help you. Preparation for surgery involves placing intravenous (IV) lines. The IV lines will help prevent dehydration, monitor your blood pressure, and deliver medication at appropriate times during your surgery. At this time a flexible catheter (plastic tube) called a Swan-Ganz catheter is placed in your neck. This helps your doctors determine the pressure or force in the various heart chambers and also gives your Transplant Team the ability to monitor the amount of blood in liters per minute that your new heart is pumping. Note: You will be asked to remove all jewelry, dentures, contact lenses, or cosmetics (including nail polish and make-up) to minimize the risk of contamination from germs during surgery.
16 The SurgeryOnce you are prepared for surgery you will be transported on a stretcher to the operating room(OR). Your family may escort you to the doors of the OR. Your family will then be escorted to theCardiac Surgical Unit (CSU) Waiting Room. You will find that the OR is cool in temperature (askfor a blanket if you feel cold). There will be a lot of equipment, some of which will be used tomonitor your “vital signs” (such as blood pressure and pulse) during surgery. There will be cardiacOR nurses and technicians checking your name bracelet, setting up instrument trays, and ensuringall details are attended too. The best thing you can do is to lie back relax and prepare for theanesthesiologist to “put you to sleep.”Patients will receive immunosuppressive medication prior to and/or during surgery. These medica-tions are designed to suppress, or slow down, your immune system so that it will not activelyattempt to reject your new heart. Remember that slight rejection should be expected, but rejectiondoes not mean transplant failure. There will be a more detailed description of your immune sys-tem, the rejection process, and the medications used to prevent rejection, later in this manual.YOUR DONOR HEARTThere will be extensive tests performed on your donor’s heart to attempt to ensure you receive thebest heart possible. Your donor’s age is the only information we can share with you. Most hearttransplant recipients are very grateful to their donor families and want to express their gratitude.If you choose, you may write a letter to your donor family and give it to a transplant coordinatorto forward to the organ procurement agency. This can be done at anytime. FAMILY WAITING ROOM For your family’s convenience, a cardiac surgery waiting room has been set up on thethird floor of the hospital. Immediate family members may wait here while surgery is beingperformed. Your primary surgeon will meet with your family in this waiting area after yoursurgery is completed.Note: This is a nonsmoking lounge. If family members must smoke, they must use smoking areasprovided outside the hospital.Sleeping in the waiting rooms is not encouraged. If you need local lodging, please contact thePatient/Guest Relations representative or heart transplant coordinator for information on hotels.
17 The Operation Once you have received general anesthesia and are asleep, the Transplant Team starts to work, The surgeon will make an incision through your breastbone (sternum). When the heart arrives your surgeon will remove your old heart, and sew in your new heart. Please see the diagram below for a more detailed explanation of the heart transplant procedure. Diagram HOW A HEART IS TRANSPLANTED When the heart is RECIPIENT blood pulmonary artery vessels removed, the catheter tube from bypass DONOR HEART back half of the left and right superior vena atrium are left in aorta place. The front aorta DONOR right half of the donor atrium heart’s left atrium is sewn to the stitches patient’s left atrium. Then the heart is swung over so the right RECIPIENT contains left atrium chambers right atrium and right ventricles vena cava can be sewn remnants of recip- chambers of the together. Once ient’s heart left atrium their heart is in place, the donor’s aorta and pulmonary arteries are sewn to the patient’s arteries.
18 After SurgeryWhen you wake up from the anesthesia, you will be in the Cardiovascular Surgical Intensive CareUnit (CVSICU). The nurses will be observing isolation technique (wearing masks, gloves andsurgical scrubs) to reduce the possibility of infection.YOUR IMMUNE SYSTEMWhite blood cells (WBCs) help make up our immune system. The job of the WBC is to protectus from foreign substances (for example infection, or transplanted organs). When a new heart istransplanted, the immune system views it as a foreign substance and can cause your body to rejectit. This is why you must take immunosuppressive drugs (the most common are Neoral, Imuran orCell-Cept, and Prednisone). Your immune system has special intelligence or memory cells that willalways recognize “foreigners”; therefore, you will always require immunosuppressive drugs toprevent your body from rejecting your new heart.A Reminder About the Cardiovascular Surgical Intensive Care Unit (CVSICU): It is a specializedenvironment where you are more closely monitored than would be required on a regular hospitalfloor. How long you remain in the CVSICU depends on your rate of progress. Your recuperationwill be followed carefully. There is a chance of complications, but in this protected, specialized areathe risk of infection is reduced. Your Transplant Team will determine when it is time for you to betransferred from the CVSICU. At certain points in your recovery, it may also be necessary for youto return to the CVSICU for specialized monitoring to ensure your best recuperation.When you first wake up you will notice an uncomfortable sensation in your throat. There will bea tube in your throat leading to your windpipe. This is called an endotracheal tube. It will besomewhat uncomfortable, but it will help you breathe and get the right amount of oxygen. It willbe connected to a breathing machine called a ventilator. You may feel as if you are not gettingenough air, but you are; try to relax and let the machine do the work. Your nurse will remind youof this. While you are connected to the ventilator; you will not be able to speak. To communicatewith your nurse, you will be able to nod or shake your head to signify “yes” or “no.” Again, thismay be frustrating, but it is a temporary situation until your lungs have expanded and are workingwell. This should take only a few hours. You will have a nasogastric tube which is placed throughyour nose, into your stomach. This will keep your stomach from feeling distended. Remember,you will also be very drowsy during this time and will barely be aware of the tubes and lines.Other equipment or monitors you or your family may notice are special machines to continuouslymonitor your heart function and blood pressure. An electrocardiogram (ECG) will be doneroutinely to observe your heart rhythm and rate. In addition, the Swan-Ganz catheter that wasplaced preoperatively will remain in place to continuously determine the pressure, or force, in thevarious heart chambers. By monitoring these pressures along with your vital signs, weight, intake,and output, your transplant doctors can determine how well your new heart is functioning.
19 In the recovery period immediately following surgery, this very sensitive monitoring equipment may occasionally beep or sound an alarm. Do not be upset by this. These are reminders for the nurses to check one of the machines. You will have a Foley catheter in place. This is a tube that will help you pass urine. It is placed while you are asleep, before surgery. This catheter may seem uncomfortable and make you feel like you need to urinate. If you notice that your bladder is feeling distended, please let your nurse know. You will also have chest drainage tubes near the bottom of your chest incision that will drain off the fluid and blood that collect after surgery. All tubes and catheters will be removed as you get stronger – a few days to a week after surgery. COUGHING AND DEEP BREATHING Once you are awake and strong enough to breathe on your own and have been removed from the ventilator (breathing machine), your nurse will ask you to do deep-breathing exercises and to cough. This will further assist your lungs to expand and remove secretions that collect following any surgery. This may be unpleasant, but it is very important. One of the most common complications that occur following heart transplantation is infection, particularly lung infection. Getting rid of the congestion in your lungs will help prevent germs from growing. The Transplant Team will make certain that you receive enough medication to ease the pain associated with coughing, moving and the surgical incision. It’s important to tell them when you do have pain. VISITORS Because of your need for rest and protection from infection, visiting hours are very limited while you are in CVSICU. Visitors are limited to healthy, immediate family members and are allowed to visit just three times daily. Your family members may ask a transplant coordinator or call CVSICU, 844-7402 for visiting hours When your family members visit you in the CVSICU, they too will have to observe infection precautions. If they are coughing, sneezing, or feverish they should not be visiting. They should be dressed in clean (recently laundered) clothing. Upon entering the CVSICU, they need to report to a member of the nursing staff before entering your room. The nurse will instruct them on proper hand washing, and use of mask, gloves and gown. You are at high risk for infection after surgery. Your family must take these precautions with every visitation while you are in the CVSICU.
20One more important requirement is placed upon your family. One family member must bedesignated as the “hospital contact person.” This person should be the only one to call the hospitalfor daily updates. This person can then distribute information to other family members. Thisgreatly reduces the number of phone calls and allows the nurse to spend more time with you. CVSICU Telephone Extensions: 3D1 – 844 -7402 – Rooms D300-316 3D2 – 844 -7539 – Rooms D318-334Ask the nurse or coordinator which extension should be used.TRANSPLANT UNITWhen your doctors decide you are well enough, you will be transferred to our Transplant Floor.This is a specialized unit on the 8th floor, where all transplant recipients are cared for followingtransfer from CVSICU.You will be in a private room. (One healthy family member will be allowed to stay with youovernight in the room if you wish.) Visiting hours are typically 8:00 a.m. – 8:00 p.m.Family members still need to wash their hands each time they enter your room. Visitors will nolonger be required to wear masks, gloves and gowns once you leave the Intensive Care Unit. Youwill be required to wear a mask whenever you leave your hospital room. At this point, you maywear regular comfortable clothes (a warm-up suit, for example) during the day. Personal hygiene isvery important post-transplant. As your condition permits, we expect you to bathe regularly anduse good grooming habits. CARDIAC REHABILITATION As soon as you are alert and chest tubes are removed, a physical therapist or nurse whosespecialty is cardiac rehabilitation will begin working with you. The “step wise” exercise program(from range of motion exercises to riding a bicycle) is initiated to help you regain strength anddecrease the complications associated with immobility. This rehabilitation program is an integralcomponent in your speedy recovery. Activity in addition to the cardiac rehab program is encour-aged, but should be approached in moderation. If at anytime while walking or riding a bicycleyou feel dizzy or short of breath, stop the activity and call for assistance. NUTRITION Your nutritional status is very important during your recovery. While you are hospitalized,you will be on a modified cholesterol (fat), low sodium (salt), diet. The low fat–low salt dietmust be continued at home. The dietitian will instruct you and your family on the elements of ahealthy cardiac diet. If you have Diabetes Mellitus, you will receive additional information on theAmerican Diabetic Association Diet that you should be following. A diabetic nurse instructor willbe available to teach you how to test your blood glucose as well as how to give yourself insulininjections, if needed.
21 ENDOMYOCARDIAL BIOPSY A cardiac biopsy is basically a painless procedure that will be performed to detect the presence and severity of graft (heart) rejection. The skin on the right side of your neck or groin area will be cleansed, and you will be given a local anesthetic. You will feel a slight superficial stinging sensation. A tiny incision will be made to enable the physician to insert an instrument called a bioptome into a large vein. As the doctor inserts the bioptome, you will feel some pressure or slight discomfort. The bioptome is gradually advanced through the vessels, into the heart where it is used to take minute samples of heart tissue to be tested for rejection. Biopsies are performed weekly while you are in the hospital, then as frequently as each week for 2-4 weeks, every other week for four weeks, then monthly and annually at your physician’s discretion. Initial hospitalization will vary from ten days to two weeks or may be much longer depending upon how quickly you recover from surgery, your state of health at time of surgery, and whether you develop any complications such as infection.
22 DischargeDischarge planning does not start just prior to discharge. It does not start at the time of thetransplant surgery. Discharge planning begins as soon as you are accepted into the programfor computer activation, on the list.By this time, you should already know which pharmacy can provide you with the best services.You will need to provide the pharmacy name, phone number, and address to your transplantcoordinator to order discharge medications. You should have already purchased a blood pressurecuff, thermometer, and scale; knowing that post-operatively you must monitor your blood pressure,pulse, temperature and weight every day. Many transplant mail order pharmacies will provide youwith a blood pressure cuff, thermometer, and pill box free of charge.You should have informed all friends and relatives with colds/flu to send their regards via telephoneonly. And while hospitalized after surgery, your house should have been cleaned thoroughly. Youshould have already purchased a box of masks to have available to wear when exposed to crowdsor within the hospital/doctor’s office.You should have completed a financial screening which should enable you to plan financially foryour expenses following transplant. Additionally, you should have already initiated any lifestylechanges necessary to meet these new financial demands. If you are less than 60 years of age andnot formally retired prior to your illness (you are not working only because of your medicaldisability), then you should be planning for your return to work within 6 months after yourdischarge home. Patients who are no longer disabled will not be candidates for disability incomeone year after surgery.As many of the problems you may encounter postoperatively are not transplant related (brokenbones, dental work, vaccination, changes in vision, etc.), you should maintain contact with yourprimary care physician/internist to continue follow-up care. If your primary care physician is acardiologist, you may want to also see an internist. You should identify emergency contactsin your local area (911, Fire Department, etc.). It is recommended that your significant other/primary support system should complete a course in CPR.You should already be familiar with the major side effects of Neoral (Cyclosporine), prednisone,and Cell-Cept. Additionally, you should have a basic knowledge of the signs and symptoms ofrejection and infections. You can find these in additional chapters in this book.
23 Going Home The following are some tips for the trip home, and some activity guidelines. TRAVEL Try to plan for a relaxed trip home. Dress comfortably, in loose fitting clothes. When traveling in a car, plan to stop once an hour, and get out and “stretch your legs”. Be sure to move your legs often while seated, to relax your muscles and to help prevent swelling in your legs. If you plan to travel home in an airplane, it MUST have a pressurized cabin. Make sure to have all baggage lifted and carried by a porter, friend, or relative. Plan your activities to include as much rest time as possible. Believe it or not, the excitement of going home can be very tiring. INCISION CARE Your chest incision will be “open to air” (not covered with a dressing) when you leave the hospital. The stitches that hold your incision closed are internal. These will dissolve over time, and will not need to be removed. It is recommended that you shower, with warm soapy water and a mild non-perfumed soap. Wash your incision with soap and water using a clean washcloth. PLEASE have someone help you in and out of the shower for the first few times. Very hot water or a hot bathroom may cause dizziness or weakness and should be avoided. Washing with warm soapy water is all the care that your incision will need. You will need to observe the incision for the first few weeks. You may notice itching, numbness, or soreness around the incision. These are expected, so don’t worry. Many people obtain relief from a heating pad applied to the breastbone, on low for 30 minutes, 3 or 4 times a day. If your incision becomes red, swollen, painful, or shows drainage, please notify the transplant office. HOUSEHOLD CHORES Many tasks put stress on the breastbone and should be avoided until healing takes place. Eight weeks after the surgery it is okay to: Take care of the children Carry items that weigh more than 10 pounds Vacuum the house Move furniture Weed the yard Mop the floors Mow or rake the yard DRIVING Do not drive until your doctor says that you can. Breastbone healing, medicines, and being tired are all things that must be considered. If you were in a car accident, hitting the steering wheel could re-injure your breastbone. So, driving a car is not allowed for 6 - 8 weeks after surgery.
24 RECREATION You will be in an active exercise program before discharge that you must continue at home.It doesn’t matter if you walk briskly, jog, or run – the important thing is to try to exercise each day.Remember to avoid extremes in temperature and start slowly. After your breastbone heals, you canenjoy playing golf, tennis, or swimming. If you did not do these things pre-transplant, please con-sult a doctor prior to beginning these activities.If at anytime you feel lightheaded, dizzy or short of breath, discontinue your activity. Symptomsshould resolve within a few minutes. When you resume activity, begin at a slower pace. SWIMMING Once your incision has healed, you may swim in a pool or ocean. Do not swim underwaterfor a minimum of 3 months after your surgery. Swimming in standing water like a lake, is notrecommended. A jacuzzi less than 99ºF is fine for you to use.SEXUAL ACTIVITYJust about all heart patients worry about when to resume sexual activities. As a general rule, if youcan climb 2 flights of stairs easily without shortness of breath, it is safe to resume sexual activities.For the first eight weeks, try to avoid positions which can cause pressure on the breastbone ortension on the arms and chest. Try to choose a time when you are rested and relaxed (maybe in themorning, after a restful sleep). Wait at least 2-3 hours after a meal. If you find that sexual activitymakes you very tired, tell your doctor or coordinator about this. If you feel uneasy or unsure aboutsex, give yourselves time for hugging, caressing, and getting to know each other again.All family planning or birth control must be talked about with your doctor either before dischargefrom the hospital or on your first office visit.DAILY WEIGHTS AND TEMPERATURESYou should keep a daily record of your weight because: You are likely to gain fluid You will go home on a low salt diet You may be on a water pill (such as lasix)A weight gain of 2-3 pounds a day is due to fluid rather than fat. Please call the heart transplantoffice if you gain more than 3 pounds in one day.You should always: Weigh yourself first thing in the morning, after urinating Wear the same amount of clothing each time Weigh before breakfast and bowel movements
25 You also need to keep a record of your temperatures, daily. The best time of the day is between 5:00pm and 7:00pm. If your temperature goes above 100.0 degrees F please call the heart , transplant office at 1-800-505-7769. DO NOT take Tylenol or any antibiotics unless your doctor tells you to. These can hide the important signs and symptoms of infection. BLOOD PRESSURE You need to keep a daily record of your blood pressure. If your blood pressure is less than 100/60 you should call the heart transplant office. This could be a sign of rejection. If your blood pressure is greater than 150/100 you should call the heart transplant office. Remember: If you want to recheck your blood pressure, wait at least 5 minutes after your first check. If you do not wait to recheck you may get an inaccurate reading. NUTRITION Proper nutrition will be one of the keys to your recovery and your long term well being. You must maintain a low cholesterol, low fat, low sodium diet. Fresh fruits and vegetables are recommended, but must be washed. Fill your sink with water and add 2-3 drops of liquid dish detergent. Wash the fruits and vegetables well, then rinse thoroughly. You may eat in restaurants. Try to avoid going to restaurants at peak dining hours to avoid crowds. Avoid buffet style served food and salad bars. Do not eat any raw meat! This includes: sushi, steak tartar and raw oysters. MASKS You should always wear a mask when you go to any hospital. For at least 3 months post transplant you should wear a mask when inside public areas (e.g. churches or malls). You do not need to wear a mask when you are inside or outside your home (unless you are near a construction area). If someone in your household is sick: Do not sleep in the same room You or the sick person should wear a mask while the symptoms last Wash your hands well and frequently
26 FOLLOW-UP SCHEDULE After discharge home, you are monitored for: Rejection Infection Hypertension (high blood pressure) Problems related to steroids Morbid obesity High blood sugars/diabetes Osteoporosis Malignancy (cancer) Coronary artery disease Cardiac muscle scarringYou are given scheduled appointments to attend the cardiac transplant outpatient clinic.The primary goal of the clinic visits are: Patient education Surveillance for episodes of rejection Surveillance for infectious complications Medication adjustmentsClinic visits for biopsy within the first year post-transplant are usually scheduled as follows: Weekly x 4 weeks (Days 7, 14, 21, 28) Every 2 weeks x 8 weeks (Days 42, 56, 70, 84) Every 4 weeks x 12 weeks (Months 4, 5, 6) Every 2 months until 1 year post-transplant (Months 8, 10, 12)Should you have rejection or an inconclusive biopsy, we may need to schedule additional biopsydates. There may also be occasions that you will be scheduled for a clinic visit without a plannedbiopsy. This could be in follow-up to a rejection treatment, to evaluate a resolving infection, or toassess a new problem.
27 What Does Rejection Feel Like???? Rejection can happen at any time. It usually happens when your immunosuppressive drugs are decreased or your weight changes. Things you might feel with rejection are: 1. Fever (100.0 degrees or higher) 2. Blood pressure less than 100/60 3. Irregular heartbeats 4. Being tired or nervous 5. Not able to exercise as much as previously 6. Signs of heart failure: shortness of breath swollen ankles foamy cough bluish color nails and lips weight gain of 3 pounds in one day 7. Feeling “ill” or any change in the way you feel 8. Dizzy, lightheaded The sooner you report any of these symptoms the easier it will be to take care of them. If you feel any of these symptoms, call your transplant coordinator immediately.
28 Your MedicationAs stated earlier, transplant recipients will take immunosuppressive medications for aslong as they have a transplanted organ. This is an absolute “must” to help prevent rejection.In addition, many recipients will be taking additional medications after their transplant.A person who does not take his or her medicine as prescribed is “noncompliant.” Noncomplianceis the third major cause of transplant failure. This is why it is so important for you to take yourmedicine exactly as prescribed by your doctor, and to continue routine visits with your physician.It is your most important job after your transplant. Your team is trusting you to do it correctly.A medication chart has been included at the end of this section so that you can keep a record ofyour daily medication intake. Bring this sheet with you to all your clinic appointments. This isyour responsibility. We have also left space for your Transplant Team to use in order to provideyou with specific instructions on how and when to take your medications. BE SURE TO FOLLOWTHESE INSTRUCTIONS EXACTLY.Never skip a dose or change the amount of drug unless specifically instructed to do so by yourphysician or Transplant Coordinator. Should you forget to take your medication, or if you happento vomit a dose or have diarrhea more than twice a day, contact your Transplant Coordinator foradvice. Do not make a decision to change, repeat, or skip a dose on your own. PHARMACY Prior to your discharge from the hospital, you will need to decide which pharmacy will bedispensing your medications to you. If you are using a neighborhood pharmacy, it is importantthat you or a family member call that pharmacy to determine if they have Neoral (Cyclosporine)and Cell-Cept in stock. Neoral and Cell-Cept are very expensive, so many pharmacies to not haveready stock. Most can order and receive the drug in a few days. Planning ahead is crucial!Some of our patients use mail order pharmacies. You may ask the transplant social worker orcoordinator for more details.It is recommended that you wear a “Medic Alert” bracelet concerning your transplantation. It isimportant that your bracelet state that you have had a heart transplant, the date of your transplant,any allergies and if you have any other medical problems, for example, diabetes. This will enableany physician who sees you in an emergency to know your special needs. To obtain this bracelet,call (toll-free) 1-800-344-3226 or write to Medic Alert, Turlock, CA 95381.
29 DO’S don’ts THE FOLLOWING ARE SOME “DO’S” AND “DON’TS” ABOUT YOUR MEDICATION DO Learn the names of your drugs and why you take each medication. Take all medication as directed. Keep medication in original container with labeling that show name, dosage, and expiration date. Report all side effects (nausea, vomiting, diarrhea) to your Transplant Team. Keep medications out of the reach of children. DON’T If you miss a dose, DO NOT double the next dose. Take the next dose as directed, and notify the Transplant Team about the omission. DO NOT take any other medication unless checking with the Transplant Team, including medications that may be prescribed by a doctor other than your transplant cardiologist. This applies to over-the-counter remedies such as cough/cold preparations, aspirin, asthma products, etc. as well. DO NOT keep medications in the bathroom cabinet, where they can be exposed to moisture. DO NOT wait until the last minute to call for medication refills. Prescription medication refills will be called into the pharmacy within 2-3 business days. Always check the number of refills left on each prescription and call for prescription refills no later than 2 weeks prior to running out of medications. DO NOT attempt to become pregnant while taking immunosuppressant medications without first discussing this with your transplant cardiologist. These drugs are not recommended for use during pregnancy and may cause harm to your unborn child. These drugs can alter the fertility of both men and women. Please consult your physician. If you experience drug side effects, they will be most noticeable during the first year after your transplant, when drug dosages are highest. Many of these side effects are temporary and should diminish with time.
30Immunosuppressive Medications & Their Side EffectsNEORAL (Cyclosporine)Neoral is a potent immunosuppressive drug used to prevent transplant rejection. Because of thisdrug, transplantation is now a therapeutic option for an increasing number of patients. In general,Neoral has given transplant recipients a new “lease on life,” free from the restrictions of chronic,disabling disease and the serious side effects of high doses of Prednisone. The doses of Neoral areadjusted according to your weight, kidney function, and the amount of the drug measured in yourblood stream.As with any medication, you may experience some side effects while taking Neoral. Side effectsare more common initially, when your dose is higher, and they usually subside as your dose isreduced over time. If you notice any side effects, do not be alarmed; simply report them to yourphysician, but do not stop taking your Neoral without your transplant physician’s consent. Yourblood will be tested frequently to monitor Neoral levels in order to minimize the risk of liver andkidney dysfunction.The most common side effects of Neoral are: Signs of kidney dysfunction such as a decrease in urine output, fever, or swollen hands and feet. Tremor (a slight shaking of the hands). Growth of excessive body hair (thicker hairs). High blood pressure. Swollen or bleeding gums. Headache.A small number of patients experience one or more of the following effects as well – stomachdiscomfort (cramps, nausea, and/or vomiting), diarrhea, acne, flushing, convulsions, decreasedwhite blood count, breast enlargement in males, sinusitis, and a burning or tingling sensation onthe skin, especially on the fingers and toes.
31 FK 506 (TACROLIMUS, PROGRAF) FK 506 is an immunosuppressant medication that is used instead of Neoral to prevent transplant rejection. FK 506 is similar to Neoral in that it is adjusted according to your weight, kidney function, and the amount of the drug measured in your blood stream. The most common side effects of FK 506 are: Signs of kidney dysfunction such as a decrease in urine output, fever, or swollen hands and feet. High blood pressure. Diabetes. Headache. Tremor (a slight shaking of the hands). PREDNISONE/MEDROL Prednisone is a corticosteroid, or steroid hormone, similar to one your body produces naturally. It is given with other medications to prevent rejection. After transplant surgery, your Prednisone dose will be quickly reduced to approximately 20 mg daily. Then over the following months, the dose will be slowly decreased. The goal, when possible, is to be able to stop Prednisone therapy while keeping you free of rejection. During periods of rejection, the dosage may be increased for a few days and then gradually lowered. If rejection is severe, Prednisone may be given intravenously. A usual maintenance dose is 5 to 10 mg twice a day. Prednisone is usually supplied as 5 mg, 10 mg, or 20 mg tablets that can be broken in half if necessary. SIDE EFFECTS The side effects of Prednisone are also related to the dose of the drug and may subside or decrease as your dosage is reduced. Again, you may or may not develop any or all of these side effects, but you should be aware that they can occur. Report any of these side effects to your physician: Swelling of the face, hands, or ankles. This will be noticeable by puffy cheeks or a ‘full’ face. At first you may be alarmed at the difference in your appearance. This too will resolve as your dose is lowered. Stomach irritationthat could lead to bleeding ulcers. You may be advised to take an antacid between meals and to take your dose with a meal, rather than on an empty stomach. Weight gain due to an increase in appetite or fluid retention.
32 Heightened risk of infection due to suppression of the immune system. This risk is greatest in the early months after your transplant, when your dose is relatively high. Diabetes known as “steroid-induced diabetes”, may occur with high doses of Prednisone. If you have diabetes to begin with, your insulin requirements will be increased. Skin changes including slower healing, more delicate skin, rash or acne on the face, chest and back, increased hair growth, easy bruising and stretch marks. In addition, your skin will be more sensitive to the sun. Use a strong (SPF 15) sunscreen. Muscle weakness Osteoporosis a weakening of the bone which can lead to compression fractures of the vertebral column. Fluid imbalanceincluding potassium loss. You may need to take oral potassium supplements. Mood swings that may make you feel fine one minute and blue the next. Cataracts An eye condition that decreases clarity of vision. To help decrease your risk, regular visits to your eye doctor (ophthalmologist) are recommended.Note: Because long-term use of Prednisone affects the functioning of your adrenal glands (whichproduce adrenaline). NEVER discontinue this medication abruptly. The Prednisone dosage must begradually tapered over time. Also, because of the effect on the adrenal glands, you may need morePrednisone during stress. Your Transplant Physician will advise you about any dosage adjustments.CELL-CEPT (Mycophenolate Mofetil)This drug is an immunosuppressive drug. It comes in 250 mg and 500 mg capsules, and stops theinflammatory response that is a part of rejection. This drug is used in combination with Neoral andPrednisone. Take Cell-Cept as directed by your physician, 1 hour before or 2 hours after a meal.The side effects of Cell-Cept include increased risk of infection and diarrhea and stomach upset.
33 MYFORTIC (Mycophenolate Mofetil) This drug is an enteric coated formulation of Cell-Cept. It is given to patients who suffer from gas- trointestinal side effects of Cell-Cept. Myfortic comes in 180 mg and 360 mg capsules. It is impor- tant not to crush, cut or chew this medication due to its delayed release. The side effects of Myfortic include constipation, diarrhea, nausea, and risk of infection. IMURAN (Azathioprine) This drug is also an immunosuppressant. It comes in 50 mg tablets, which may be broken for smaller doses. Some transplant centers prescribe this drug along with Neoral and Prednisone. As with all medications, take Imuran as directed by your physician. The side effects of Imuran include an increased risk of infection, nausea and vomiting, mild hair loss, decreased white blood cell count, as well as other blood abnormalities. There is also a possibility of liver dysfunction. Report any signs of jaundice (yellowing of the skin) to your Transplant Physician. RAPAMUNE (Sirolimus) Rapamune is a newer immunosuppressive drug which is used to prevent transplant rejection, decrease to effects of kidney failure from other transplant medications, and prevent the progression of coronary artery vascular disease. The side effects of Rapamune include hypertension, extremity edema, headache, acne, elevated cholesterol and triglycerides, abdominal pain, diarrhea, tremor, and weakness.
34MONOCLONAL ANTIBODY (Orthoclone okt3)This is a medication given intravenously for the treatment of severe rejection. It is used alone orwith other medications. The medication is given over 10-14 days. The most common potentialside effect of OKT 3 is a fever that occurs approximately 30 to 60 minutes after the drug is given.Some other common medications you may be taking after your transplant:Antihypertensives (Norvasc, Procardia, Capoten, Cardizem) Purpose: To lower blood pressure – remember, a common side effect of Neoral is high blood pressure. Possible Side Effects: Range from edema (ankle swelling), nausea, fatigue, headache, cough, or dizziness.LASIX (furosemide) Purpose: To eliminate excess fluid from the body. Possible Side Effects: Weakness, dizziness, nausea or muscle cramps.PEPCID (famotidine) Purpose: Used to prevent or treat stomach and duodenal ulcers, which may be caused by Prednisone. This drug is usually discontinued when Prednisone is discontinued. Possible Side Effects: Dizziness, headache, diarrhea, or constipation.ACYCLOVIR (Zovirax) Purpose: To prevent or treat infections caused by the herpes simplex virus. Possible Side Effects: Nausea, vomiting, headache or fatigue.Generally this drug will be discontinued 6 months after your transplant when your immune systemis better able to fight infections.SEPTRA Purpose:To prevent a certain kind of pneumonia (pneumocystis), that can attack people who are immunosuppressed. Possible Side Effects: Nausea, vomiting, or depression.Generally this drug will be discontinued 6 months after your transplant when your immune systemis better able to prevent pneumocystis pneumonia.
35 ECOTRIN (enteric coated aspirin) Purpose: To help prevent clogging of blood vessels in your transplanted heart. Possible Side Effects: Upset stomach or prolonged bleeding time. MYCELEX TROCHE Purpose: Used to treat or prevent mouth sores – must remain in mouth until dissolved – should not be chewed or swallowed whole. Generally discontinued six months after your transplant. Transplant Outpatient Clinic IN PREPARATION FOR YOUR CLINIC VISITS: Make hotel/motel reservations. If you live out of town and need to stay in Tampa the night before your appointment, please contact the transplant office to get a listing of hotels in the area. Obtain precertification from insurance company. Some companies reimburse patients for lodging expenses, contact your provider to see if you have this benefit. of your medications, and bring your booklet with your Bring a correct updated list documented daily weight, temperature, and blood pressure. Do not take your Neoral (Cyclosporine)/Prograf (FK506, Tacrolimus) or Rapamune prior to clinic. After your blood is drawn you can take these medications. You may take all of your other medications prior to coming to the clinic. Do not eat breakfast. Bring all your medications, you can expect a 4-6 hour stay in the clinic depending on the type of visit scheduled. Please bring enough medications in case you need to spend the night at a nearby hotel or unexpectedly make plans for the evening in Tampa. If you are a diabetic, do not take your morning insulin injection or pills until instructed to do so by the clinic staff when breakfast has been ordered for you. You may then take the diabetic medications as prescribed. If you are taking a “blood thinner” medication such as coumadin, you must discontinue this med- ication 3 days prior to your clinic appointment. We will restart the blood thinner following com- pletion of testing. If you are receiving heparin injections, please call the Transplant Office at (800) 505-7769 for further instructions. If you are scheduled for an exercise stress test, please bring loose fitting clothing and tennis shoes.
36CLINIC DAYThe outpatient clinic is located at Tampa General Hospital on the fourth floor of the East Pavilion.After registering at the Admissions Office on the fourth floor, check in at the nurse’s station.The clinic is held based on your specific physician’s schedule. A transplant assistant makes theappropriate arrangements for each patient by pre-scheduling all the diagnostic tests. A physicalexam, laboratory studies (CMP, CBC with differential, and anti-rejection drug levels), chest x-ray,and cardiac biopsy are the routine diagnostic studies performed.Please anticipate a 4-6 hour stay in the clinic with each visit. Make all your transportationarrangements, (airplane flights, rides with friends or family, etc.) accordingly. But, also be preparedto stay longer or be admitted should we discover a problem requiring further evaluation.The Infectious Disease, Pulmonary, and Surgical physicians on the team make themselves availablefor consultations within the Transplant Clinic setting. However, other specialty physicians, (suchas gastroenterologists, nephrologists, dermatologists, urologists, orthopedics, gynecologists,oncologists, etc.) are not available on short notice. Therefore, should you be referred to be seenby any of these previously mentioned physicians, you are responsible for making your ownappointment as soon as possible. The Transplant Office will be glad to provide this specialistwith a synopsis of your clinical history and current status. Please inform the Transplant Officeas to the date and time of your appointment, and where to send the clinical synopsis. You maychoose to be seen in the Tampa area, in which case, the coordinators can supply you withphysician names and phone numbers. If you choose to be seen by a specialist in your localarea, we advise you to contact your local primary physician for a referral.BIOPSY RESULTSThe team receives your biopsy results between 12:30 pm and 2:00 pm. on Thursday. Resultsare made available to you after 2:00 pm on Thursday or on Friday of the week you are seen inthe clinic.If your biopsy is showing rejection, you will be contacted by a coordinator with instructions.Rejection may or may not require hospital admission. Please do not call our office before 2:00 pmon Thursday for a report, as it will NOT be available.LABORATORY RESULTS/SPECIAL TESTINGWhen lab work is ordered for you, you may need to have your blood drawn and processedthrough your local doctor. Have the results faxed to Tampa General Hospital Transplant Services at(813) 844-4016 at least two (2) days prior to your appointment. If you have HMO/PPO insurance,please ask your HMO/PPO physician where your lab work must be done. Blood specimens sent toTampa General should only be drawn on Monday, Tuesday, or Wednesday. If your blood work(including drug levels) is run at Quest, LabCorp (or other outside lab), you must have your blooddrawn at least one week before your appointment.
37 Drug levels must be processed at Tampa General Hospital, or a laboratory near you that processes these levels using the same procedure as Tampa General Hospital. If you have no local lab that uses the same procedures as Tampa General. You may have your blood drawn elsewhere, but a 5 cc purple top tube must be overnight expressed to: Tampa General Hospital Transplant Services Room E406 2 Columbia Drive Tampa, Florida 33606 Please be advised that postal regulation requires proper packaging for mailing specimens. Your post office can provide you with containers. The cost of mailing your blood is your expense; your insurance does not cover this. Remember – if you need an immunosuppressive drug levels drawn, do not take your medication on the morning your blood is being drawn. Once your blood is drawn, you may take your medications. Copies of your lab work drawn at Tampa General can be requested through Medical Records, (813) 844-7525, or by asking the coordinator for a copy at your next clinic visit. Contacting The Coordinator Patient Phone Calls: The transplant office receives over 100 patient calls a day. In order for us to respond to the calls in a timely manner, we have included a list of the current Clinical Cardiac Transplant Coordinators, as well as the Transplant Office staff and areas that they can assist you with. Clinical Transplant Coordinators: Lori Anderson Lisa Head Kerry Ryan, CCTC Sue Barrett Diane Jimenez Mary Seaman, CCTC Lisa DiChiara Laurie Joughin Ginger Sims Brenda Farlow *CCTC (Certified clinical transplant coordinator) The Clinical Coordinators are responsible for patient medical issues. The coordinators are in the hospital Monday-Friday 8:00 am-4:00 pm. After hours a coordinator is available on beeper for EMERGENCIES, via the hospital operator. Medical Problems: Emergency – call 911 if what you are experiencing is a true emergency. Your family can call the Transplant Office after calling 911. Please have the ER physician call us with a report.
38Urgent problems – You must speak to the secretary or after hours, the coordinator on call(see below). Please do not leave a voice mail. Calls will be returned promptly by a coordinator.Please have the following information available when you call: Patient name and current phone number. Give the reason for your call, including symptoms, weight, blood pressure, temperature and concerns.If you do not receive a return call within 30 minutes, please alert the hospital operator topage the coordinator again.Non-Urgent problems – If you have a problem to discuss with a coordinator, or you have follow-upinformation that has been requested, you can leave a voice mail message with the nature of thephone call and times you will be available for the coordinator to return your call. We will makeevery attempt to return these calls within 24 hours of your call.Medication Renewals – Use the pharmacy phone mail line. Call several days before yourprescription runs out. If a written prescription is needed, call 10 days ahead.To speak with a physician or coordinator after office hours for urgent matters:Call (813) 844-7137 or 1-800-505-7769. Press 1 and you will be connected to the hospital operator. Ask for the “Heart Transplant Coordinator on call.” The hospital operators will take your name and phone number then you can hang up. The operator will then page the coordinator, who will phone into the hospital from home to answer your call.When the coordinator calls you back, he/she will need to know your concern and specific detailsregarding all vital signs (temperature, blood pressure, pulse) and weight. Be prepared to discussany recent episodes of rejection or infection, the treatment given, how long ago, and the time ofonset of this new set of symptoms necessitating the emergency. If you do not receive a returnphone call within 15 minutes, please call the operator again.Please remember, Transplant Coordinators do not staff the hospital 24 hours a day. Calls after officehours, on weekends and holidays are covered by an on call coordinator, who is not at the hospitaland is available for EMERGENCIES ONLY.If you are unable to reach the coordinator through the Transplant Office number, then call(813) 844-7000, which is a direct Tampa General operator line.
39 Transplant Office Staff All transplant personnel can be reached by dialing 1-800-505-7769 and follow the prompts. Debbie White, Transplant Assistant for Dr. Hoffman’s coordinators. Jessica Moret, Transplant Assistant for Dr. Weston’s coordinators. Chinwendu Umeh, Transplant Assistant for Dr. Weston’s coordinators. Marnese Smartt-Cruz, Transplant Assistant for Dr. Mester and Dr. Bugni’s coordinators. The transplant assistant is available to help you with insurance issues. If you have HMO/PPO insurance and if you require a referral/precert to be seen at Tampa General Hospital (PLEASE OBTAIN THE REFERRAL/PRECERT.) A referral or precert number is required for any exam, biopsy, stress test, or any other testing that you require. This is the patient’s responsibility to call or the appointment may be canceled. Please call your assistant a least a week before your visit with the referral/precert information. The transplant assistant needs to be contacted, in a timely manner, with any changes in your insur- ance coverage (including Medicare primary change). This way you can avoid the headaches of bills not being paid because the claim was submitted to the wrong insurance company. They are also involved with evaluating patient status and pagers. Windy Wills, Secretary, 8:00 am – 4:30 pm Windy is the person you will speak to when calling the office. She can assist you with the clinic scheduling, including appointment day and time, and rescheduling of visits. She is the contact person for changes in your address and/or phone number. If you are changing your primary care physician/cardiologist, then please call this information in to her. She will assure that your clinic visit information is sent to the appropriate physician. Judy Dery, Admistrative Secretary, 8:00 am – 4:30 pm Judy is the assistant to the director of Transplant programs at Tampa General Hospital. Judy can assist you if you wish to comment on the care you received during your hospitalization or clinic visit. We are always interested in compliments or suggestions you may have. Sjonne Mabbott, Director of Transplant Programs at Tampa General Hospital. Sharon Huff, Social Worker Sharon is the social worker for Transplant Services. She is available daily from 8 am-4:30 pm. She is the contact person for drug assistance programs. She is the resource for COBRA, Medicare, and the Medically Needy Program. Please call if you anticipate losing insurance coverage, so she can assist you in maintaining medical coverage. She can also assist patients with the Vocational Rehabilitation process. She will assist with billing issues that involve the lab or radiology. All other billing issues should go through the Tampa General Hospital Billing Department.