Heart Transplant Program

Toll-Free: 866.320.4573

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866.223.2273 x1234

While the first official heart transplant at Cleveland Clinic was performed in 1968, Cleveland Clinic’s Cardiac Transplant Program team began regular heart transplantation services in 1984, with 2009 marking the 25th anniversary of these services.

Since the program began, staff surgeons have performed more than 1,600 heart transplants. In 2012 alone, 42 cardiac transplants were completed, and 65 patients were implanted with a mechanical circulatory support device. Additionally, staff performed several dual organ transplants including heart/liver, heart/lung and heart/kidney transplants.

Read about the first official heart transplant at Cleveland Clinic.

The Scientific Registry of Transplant Recipients (SRTR) demonstrates that for patients receiving their first transplant between January 1, 2009 and June 30, 2011, transplant survival at 1 year is 96.14% which is higher than expected, compared to the 90.8% that would be the expected survival based on national experience.

For the past 19 years, the U.S. News & World Report "Annual Best Hospitals Survey" has voted the nation's busiest heart center as also the nation's best. Cleveland Clinic's Heart Center tops the magazine's 2013-14 rankings of best heart and heart transplant surgery hospitals.

Cleveland Clinic's Heart Transplant Program is a member of the Ohio Solid Organ Transplant Consortium (OSOTC) and the United Network For Organ Sharing (UNOS).

The Centers for Medicare and Medicaid Services has certified Cleveland Clinic as a Medicare Center for heart transplantation.

If you or a loved one would like a second opinion from a top specialist at Cleveland Clinic, but may be disabled or find it too difficult to travel, we offer MyConsult. The MyConsult program is an online medical second opinion that connects you to our physician experts who will review your medical records and diagnostic tests to assess your suitability for transplant.

For more information about heart transplantation at Cleveland Clinic, please contact the Pre-Transplant office
Phone: 216.444.8351
Toll-free: 800.223.2273 ext. 48351

Pre-Transplant Preparation

At Cleveland Clinic, we reflect upon heart transplantation as a complex process with ethical implications. This is because donor organs are scarce and heart transplantation management is a life-long concern requiring compliance to a doctor prescribed regimen that includes a healthy diet, exercise, and long-term medication after heart transplantation.

The first step in establishing a treatment partnership with the Cleveland Clinic Heart Transplant Team while undergoing an evaluation for your suitability as a heart transplantation candidate. We rely upon a series of tests and evaluations with specialists to ascertain your heart transplantation eligibility.

Not all patients are clinically appropriate for heart transplantation, as there may be findings that would predict failure of the transplanted organ. Furthermore, not all patients referred will need transplantation, other medication and alternatives may exist.

The Evaluation»

Your doctor has contacted the Cleveland Clinic's heart transplant team to have you evaluated for heart transplant or other therapies for heart failure.

A cardiologist will review your records and decide an appropriate testing for you. After recommendations are made you will be sent to our scheduling office to get your appointments set up. The evaluation by the heart failure cardiologist may take place in the hospital or in the outpatient clinic.

The purpose of the evaluation is to determine the severity of your heart disease, and which form of therapy is best suited to your condition, and whether a heart transplant is an option. We do not recommend cardiac transplantation unless it is absolutely necessary, and likely to be associated with long-term success. Often times, other treatments are possible, including other medical and surgical options.

The cardiologist will talk to you about your family history; medical history including previous evaluations, past hospitalizations, and treatments; surgical history; and social history. The doctor will perform a complete physical examination

Psychosocial Evaluation»

Psychological issues often play an important role in the long-term success of your heart transplant surgery. Emotional stability and a supportive social environment are key factors. To increase our understanding of these elements in your life, the transplant social worker will conduct a detailed psychosocial evaluation prior to heart transplant surgery. Some general areas considered are:

Identifying Information

Understanding your medical diagnosis and how your disease has progressed will help us determine your level of acceptance of cardiac transplant as a therapeutic option.

Family History Cultural Factors

Your family history and cultural factors provide information regarding your living situation.

Living Situation Before Hospitalization

Finding out about your life and family relationships is essential to the transplant process. These relationships impact both the pre- and post-transplant period.

Hobbies and Social Activities

Your hobbies and activities you enjoy may be useful in helping you cope with the period of waiting for an organ and setting recovery goals after transplant.

Support System

Includes family, friends, the community, and church. Positive support from family members, loved ones, and friends is essential during the phases of transplant and helps to ensure a successful recovery.

Education/Military/Employment

Finding out about your education level can be useful in evaluating your ability to understand medical directions, as well as assist in job placement after transplant. Military history may reveal eligibility for back-up health care systems such as the Veteran's Administration Medical Center.

Finances

This helps the business office to establish financial eligibility. Are there benefits for which you are eligible, but have not applied or been granted?

Adherence Pattern

Adherence to past medical advice and treatment plans can be a predictor of how well you will stick to future medical advice. History of smoking, alcohol, drug abuse, as well as compulsive overeating, raises concern about successful follow-up. Past and present psychiatric history is also explored.

Psychosocial Assessment

The social worker will assess your strengths, coping resources, and areas of concern regarding your ability to tolerate the transplant process. The concerns may be great enough to reconsider recommendation for transplant.

The Social Worker

The social worker's role is to use counseling skills and community resources to help you and your family maintain normal life activities during the transplant process. Information regarding housing needs also can be discussed with the social worker.

At this time, we recommend that you start making healthy lifestyle changes. These include: stopping tobacco use, eating healthy foods, stopping alcohol or use of illegal drugs, and following an exercise program. If you need help making lifestyle changes, your social worker can assist you with strategies or refer you to other resources such as a dietitian, smoking cessation specialist, or cardiac rehabilitation program. Making other major life changes, such as moving or changing jobs is not recommended at this time.

At times, grief and bereavement counseling is needed, as well as crisis intervention. Your social worker can help support your psychosocial needs and address them appropriately throughout the transplant process. The social worker has a responsibility to all transplant team members as well as to you and your family.

Diagnostic Tests»

You may undergo a variety of tests to determine the extent of your heart disease and what has caused it. If these tests have been performed recently, they may not need to be repeated.

Electrocardiogram (ECG)

An Electrocardiogram records the electrical activity of the heart. It documents abnormal heart rhythms, previous heart attacks, and thickening of the heart muscle.

Chest X-ray

A Chest X-ray is a picture on film of the structures in the chest. It helps to determine the size of your heart, the status of the lungs and bony structures, and to determine whether fluid or congestion is present in the lungs.

Blood Tests

A complete blood count, comprehensive metabolic profile, and protime INR are performed initially. If further testing is indicated, then blood typing and tissue typing will be performed. We will also check previous exposure to hepatitis, HIV, and other infectious agents.

Echocardiogram

High-frequency sound waves are used to provide pictures of the heart's valves and heart chambers. It helps us to determine the size and function of your heart.

Right Heart Catheterization

A sheath (a hollow tube) is placed in a vein in the neck or in the groin. A thin flexible plastic tube is inserted through the sheath and advanced to the pulmonary artery. A computer is connected to the catheter and measures the amount of blood circulating through the body each minute. Pressures are recorded in the pulmonary artery and right heart chambers. The results help us to adjust medications for treating heart failure.

Left Heart Catheterization

A sheath is placed in an artery in the groin. A small flexible plastic catheter (tube) is guided to the opening of the coronary arteries. Dye is injected to visualize the vessels and see whether blockages are present in the coronary arteries. A catheter is then placed in the left ventricle in order to measure the pump function of the heart.

Metabolic Stress Test

This is a special treadmill test that gives a precise measurement of your functional capacity. During the test, a small mouthpiece is used to measure how much oxygen and carbon dioxide is breathed in and out. It provides us with objective evidence of your physical capabilities.

Pulmonary Function Test

A machine measures the rate and amount of air inhaled and exhaled through a mouthpiece. This test helps to evaluate lung function. Poor lung function would exclude a patient from cardiac transplantation, and dictate alternative therapies.

Ultrasound of the Carotid Arteries

A sound wave transducer wand is used to see whether there are blockages in the arteries that supply blood to the brain.

Abdominal Ultrasound

A sound wave transducer wand is used to identify gallstones, aortic aneurysm, or blockages in the abdominal blood vessels.

Pulse Volume Recordings of Leg Arteries

A Doppler probe (or wand) is used to identify blockages in the arteries supplying blood to your legs.

Other Tests

In certain patients, additional testing may be needed during the evaluation process: eye exam, CT scan, barium enema, upper GI series, or other consultations.

Dental Evaluation

It is important to determine whether your teeth or gums may be a source of infection. You can be evaluated by a dentist at Cleveland Clinic or you can provide a clearance letter from your dentist stating that your teeth are in good condition and your mouth is free from infection.

Health Maintenance Testing

Based on health history, family history and age, there may be health maintenance testing such as colonoscopy, pap smear, mammogram, vaccinations, ophthalmology and dermatology.

Financial Considerations»

The transplant financial advisor is available to review insurance benefits with you and answer any questions. Unfortunately, a severe cardiac illness that requires transplant may involve a great deal of expense. We will make every effort to keep medical costs to a minimum.

Social Security Disability Insurance

The Social Security Administration is responsible for both the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs. SSDI provides cash benefits for disabled workers (and their dependents) who have contributed to the Social Security trust fund through FICA tax on their earnings. SSI provides a minimum level income for the needy, aged, blind, and disabled.

Under both programs, the law defines disability as:

"the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death, or has lasted or can be expected to last for a continuous period of not less than 12 months..."

Although some patients are able to continue working while they await transplant, there are others who already have been receiving benefits due to disability caused by their cardiac problems. Others apply for these benefits after the need for transplant is established. Disability forms should be brought to Cleveland Clinic to be completed along with the most current information possible. We will accurately describe your current condition.

It is important to note that disability insurance may be temporary. After transplant, your benefits may be discontinued, as we expect you to return to your normal daily activities and work.

While you are waiting for transplant, you can take important steps to ensure return to work by considering your options and beginning to make arrangements for this before the surgery is performed (see returning to work).

Living Expenses

A heart failure patient and family should be prepared to stay in the Cleveland area during the three to five day evaluation period. Additionally, patients will have to remain in the Cleveland area for four to six weeks after heart transplantation. There are hotels located on Cleveland Clinic campus. There are also hotels in the Cleveland area. With these, however, you will need to drive to and from Cleveland Clinic. Some hotel rooms may have kitchenettes.

Food costs vary depending upon living arrangements. As you make your hotel reservations, you may want to ask about room costs to be prepared for expenses.

There are housing specialists in the Department of Social Work who can discuss housing options with you. They can be reached at 216.444.5132.

There is a cost to park at Cleveland Clinic's visitor parking garage, however discounts are available if you need to park there for several days.

Transplant Selection Committee»

The transplant team meets every week to review new and current patients. The results of testing and evaluation are carefully reviewed by the AHFTC (Advanced Heart Failure Therapeutics Committee), and a decision is made about your suitability as a candidate for heart transplantation.

Acceptance into our program as a heart transplant candidate means the transplant team believes:

  • Your heart condition is severe enough to warrant this aggressive therapy;
  • The transplant surgery will make you feel better, keep you out of the hospital, and prolong your life, and;
  • There are no conditions that would prevent a successful surgery and recovery.

Each case is different and every effort is made to make this decision based on the risk/benefit ratio of your particular case. Any alternatives to transplantation will be considered. In certain cases, the risks of transplant will be greater than others. This is discussed in detail with each patient accepted to the program.

If the committee approves you as a candidate, you will be asked to make a final decision regarding placement on the heart transplant waiting list. If you agree to proceed, we will submit your data to OSOTC (Ohio Solid Organ Transplant Consortium). Once we receive approval from OSOTC, we will move forward with listing you on the United Network of Organ Sharing (UNOS) wait list.

The Waiting List Process»

If you are accepted as a transplant candidate, you are listed in the United Network of Organ Sharing (UNOS) computer. This is a nationwide computer list of all people in the country who are awaiting transplant. Once you are listed, you are re-evaluated every three months. If your condition improves or deteriorates, you may be removed from the list.

Each listed patient is assigned one of four status ratings based on clinical status. Your status may change as your condition changes.

It is impossible to tell exactly how long you will wait for your new heart. Some people wait only a few days while others wait for a month or a year or longer. Allocation of organs is based on rules established by UNOS and is related to many factors, including blood type, body size, status and waiting time.

Status Ratings for Patients Awaiting Transplant

Status 1A

This is the highest priority. Status 1A patients must require at least one of the following:

  • Use of a life support ventricular assist device (such as a IABP or left ventricular assist device) for 30 days or less.
  • Continuous use of high-dose intravenous inotropes (i.e. dobutamine or milrinone or dual inotropes) in the intensive care setting with a right heart catheter.
  • LVAD patients receive 30 days (post LVAD insertion) when staff deems an appropriate time.
Status 1B
  • A patient listed in this category requires continuous use of intravenous inotropes (either at home or in the non-intensive care unit) or has a life support ventricular assist device (such as a left ventricular assist device) in place for over 30 days.
Status 2
  • Are waiting at home or in a non-acute hospital.
  • If hospitalized, patients are not on continuous IV inotrope medication.
  • Oral medication therapy
Status 7
  • Status 7 describes someone who is on the list, but "inactive" for various reasons. A problem may have developed that makes transplantation unwise at that time. Often it means that patients have improved and might do well without transplant. Time accrued before being taken off the list as "inactive" will be counted if you should ever need to be placed on the list again or if your status changes from "inactive" to "active".

Cleveland Clinic Cardiac Transplant Program

  • The third center in the United States to perform over 1,000 heart transplants.
  • Excellent survival rates following transplant with a patient survival rate of 96 percent at one year.

Cleveland Clinic not only performs single heart transplants, but has also performed dual organ transplantation for:

  • Heart/Lung
  • Heart/Liver
  • Heart/Kidney

The Heart Transplant Team is a group of physicians, surgeons, nurses, dietitians, exercise physiologists, social workers, and other healthcare specialists who are experts in the field of heart transplantation.

Cleveland Clinic's Transplant Team is dedicated to a coordinated approach to the care of the transplant patient.

  • If you are a transplant recipient and you or your local cardiologist have questions or concerns related to transplantation, please contact your transplant physician at Cleveland Clinic.
  • Following transplant, any medical problems, questions, outpatient appointments, biopsy results, medication changes, etc. post-transplant will be handled by the transplant coordinators, extension 56590. The office number is 800.223.2273 (ext. 56590) or 216.445.6590.
  • If personnel are unavailable, please leave a message and your call will be returned as soon as possible. Messages are checked frequently during the day.
  • If you have medical difficulties at night or on the weekend, please call the Cleveland Clinic at 216.444.2200 or 800.223.2273 and ask for the cardiology fellow "On-Call". Tell the doctor you are a heart transplant patient. He/she will contact your cardiologist and give you further instructions. If you have an urgent medical problem, you should go to your local emergency room immediately.
  • If you would like to refer yourself or a patient, please contact the Pre-Transplant Office 216.444.8351 or 800.223.2273 ext. 48351.

Leadership:

  • Surgical Director: Nader Moazami, MD Cardiac Transplantation and Ventricular-Assist Device Therapies Program
  • Medical Director, Heart Transplantation: Randall Starling, MD, MPH, FACC Head, Section of Heart Failure and Cardiac Transplant Medicine, Robert and Suzanne Tomsich Department of Cardiovascular Medicine

Heart Transplant Surgeons:

Heart Transplant Physicians:

Nurse Management

  • Nurse Manager: Tiffany Buda, RN, BSN
  • Assistant Nurse Manager: Kristin Ludrosky, RN, BSN, CCTC

Inpatient Nurse Practitioner:

  • Jennifer Reese, CNP

Pre-Transplant Coordinators:

  • Deanna Hartman, RN, BSN
  • Michelle Miluk, RN, BSN
  • Janna Mutum, RN, BSN

Pre TXP Program Assistant:

  • Laura Holmes

Post-Transplant Coordinators:

  • Karen Kiefer, CNP
  • David Pelegrin, RN
  • Alexandria Johnson, CNP
  • Monica Domanski, CNP
  • Jacqueline Iammarino, CNP

Post TXP Program Assistant:

  • Crystal Kawazynski

Social Work:

  • Kay Kendall, MSW, LISW

Research:

  • Kathy Hoercher, RN, Director, Research & Operations, Kaufman Center

Mechanical Circulatory Support Team:

  • Manager: Tiffany Buda, BSN, RN
  • Assistant Nurse Manager: Kristin Ludrosky, RN BSN, CCTC
  • Brian Loveland, ACNP
  • Marjorie Urban, ACNP
  • Kimberly Miracle, ACNP
  • Chad Gady, PAC
  • Melissa Williams, CNP
  • Sheryl Hostutler, RN, BSN
  • Susie Rasporic-Hopper, RN, BSN

The process of heart transplantation takes a team effort from evaluation to recovery. Your heart transplant team consists of nurses, physicians, surgeons, dietitians, social workers, and cardiac rehabilitation specialists who work with each patient and their family to aid in the success of their heart transplant.

The more you and your family know about your heart transplant prior to heart transplant surgery, the better your long-term outcome after heart transplantation will be. Our goal is to relieve some of your anxiety about heart transplantation and help you enjoy the outcomes following your heart transplant.

The Heart Transplant Team is a group of physicians, surgeons, nurses, dietitians, exercise physiologists, social workers, and other health care team members who are experts in the field of heart transplantation. Cleveland Clinic's Heart Transplant Team is dedicated to a coordinated approach to the care of the heart transplant patient. This approach starts with the evaluation, continues through the heart transplant surgery, and follows through to recovery following transplant.

If you or your local cardiologist have questions or concerns related to heart transplantation, please contact your physician at Cleveland Clinic.

Following your heart transplant, any medical problems, questions, outpatient appointments, biopsy results, medication changes, etc. post-transplant will be handled by the heart transplant coordinators:
Phone: 216445.6590
Toll-free: 800.223.2273 ext. 56590. 

If heart transplant personnel are unavailable, please leave a message and your call will be returned as soon as possible. Messages are checked frequently during the day.

Transplant Surgery»

If a heart becomes available and you are not in the hospital, we will call you at home or on your cell phone. It is important that you are available at all times of the day or night. Please keep your cell phone nearby when you are not at home. We will ask you what number is best to reach you. You should be available 24 hours a day.

In some cases, the coordinator may arrange for transportation to Cleveland Clinic, or tell you to standby for further instructions. Be sure to notify the Transplant Coordinator if your phone number changes, or if you will be at another location. Always notify the transplant office of any other plans.

Once you are called, do eat or drink anything and keep your telephone line open.

When you get the call from your Transplant Coordinator that a donor heart has been located, you will need to come to Cleveland Clinic as soon as possible.

When you are told to come to the hospital, remember:

  • Do not eat or drink anything.
  • Bring all your prescription medications.
  • Bring a list of your medications and drug allergies.
  • Leave watches, money and other valuables at home or with the person who accompanies you.
  • Wear comfortable, easy-to-fold clothing. You will be given a gown to wear when you are admitted to the hospital. Your clothing will be given to the family member or friend who accompanies you.
  • Women should not wear make-up or nail polish.

Go directly to the intensive care unit for hospital admission. You will be met in the Cardiothoracic Intensive Care Unit (CTICU) by the nursing staff. If you are waiting for transplant in the hospital, the coordinator will notify you of transplant and you will be transferred to the CTICU.

The Surgery»

You will be taken on your bed to the operating room. You can expect the operating room to be brightly lit, cool and somewhat noisy, with a lot of people getting ready for the surgery.

The donor heart

Up to three members of the transplant team will go to evaluate the donor heart. Once the staff member have seen and determined the donor heart is satisfactory, he/she will contact your transplant surgeon.

At this time your surgeon will receive details on when the donor heart will arrive. We will then proceed with your surgery. Your family will be notified that the donor heart has been accepted and that surgery is proceeding.

Dry Run

There is always a possibility that the donor heart is not functioning properly or the donor may become too unstable to continue with transplant. The surgeon will inform you of this event as soon as they are aware of the situation. Please do not be too disappointed if this happens. We always have your best interest uppermost in our minds. If you are an inpatient, you will be transferred back to your nursing floor. If you are an outpatient you will likely have your IV lines removed and be discharged to home.

Anesthesia

The cardiothoracic anesthesia team will start to administer your general anesthesia through one of your IV lines. You will begin to feel sleepy and heavy. You will fall asleep quickly. Hearing will be the last sense to leave you before you go to sleep.

The cardiothoracic anesthesiology team will be using state-of-the-art equipment and safety features, including monitors that ensure you are safely anesthetized and asleep throughout your surgery. The team will constantly monitor your electrocardiogram, pulse rate, blood pressure, respiration and other vital body functions.

The Surgery

The surgeon will make an incision through your sternum (breast bone). You will be placed on a cardiopulmonary bypass machine that will mechanically take over the functions of the heart and lungs during the surgery.

The donor heart is removed by cutting the aorta and pulmonary artery in the mid sections. The atria are excised from the veins leading into the heart. When the donor heart arrives in the operating room, the surgeons will remove your heart and the donor heart will be placed in proper position.

There are two methods by which this occurs.

Method 1 - Bi-atrial

The donor and recipient's left atria are connected. Then the right atria are connected. Finally, the aorta, pulmonary artery and pulmonary veins are sutured together.

Method 2 - Bi-caval

The donor and recipient's aorta, inferior and superior vena cava, pulmonary artery and pulmonary veins are sutured together.

The denervated heart

The donor heart comes with its own electrical system, the sinus node, and its own coronary artery supply.


When the heart is removed from the body, the nervous system is disconnected. The heart continues to beat adequately, but without the external nerve supply. This is referred to as a denervated heart. Small temporary pacemaker wires are attached to your new heart during surgery, and brought out through the skin near the base of the incision in case a temporary pacemaker is needed after surgery to assist the heart rate. If they are not needed, they will be removed when staff feels it is appropriate, usually by post-op day five or patient depending.

The actual surgery may last from four to 12 hours, and sometimes longer. Each patient and each case is different. Please remember that if your surgery takes eight hours and another patient's surgery only took three hours, it does not mean that you are doing worse than the other patient.

The Transplant Special Care Unit»

While you are in the hospital, your cardiologist may treat your heart failure symptoms in a special critical care unit. Physicians and nurses in this unit are specially trained to provide aggressive medical care and education to you and your family. Your transplant team will follow your progress and help you recover as quickly as possible.

Pain

  • In the nursing unit, you must ask for medications to relieve your pain or other symptoms (such as nausea). You should request medication to lessen your pain and keep you comfortable so that you may move around and increase your activity.
  • If you would like to use other methods of pain control, such as soothing music or relaxation tapes, small tape players with headphones are allowed in the CTICU and in the nursing units.

Deep Breathing and Coughing Exercises

  • Continue to practice your breathing and coughing exercises.

Changing Positions

  • Continue to change your position frequently while in bed.
  • Once you are able, get out of bed, sit in a chair or walk around the nursing unit as much as possible.

Activity

  • Your activity level will begin by sitting in a chair and progress quickly to taking several walks a day on the nursing floor.
  • The Cardiac Health Improvement and Rehabilitation staff will guide your progress and will give you a home activity guide to help you to gain strength when you leave the hospital.
  • As soon as you are able, you will be assisted to the bathroom to perform your daily hygiene routine (such as brushing teeth and washing up). To help you progress your activity, you will be expected to do this by yourself. If you need any extra help, please ask your nurse.

Self Monitoring

  • You will be asked to keep track of the fluids you drink (your "intake"), the amount you urinate (your "output") and your weight every day you are in the hospital. The nurses also will teach you to monitor your heart rate, blood pressure and temperature so you will know how to manage your care after you go home.
  • You will receive information about weight control, medications and self care expectations. Try to review this information and if you have any questions, please ask.
  • You will also take part in our "self-medication program." You will also administer your own medications and learn the side effects of immunosuppression.

Changes in Nutrition

  • After surgery, many patients complain of a poor appetite and changes in how foods taste.
  • Eating healthy foods is an important part of healing.
  • Try to eat smaller, more frequent meals and choose cold foods.
  • If you need help with food choices, ask to speak to a dietitian.

Difficulty Sleeping

  • You may have difficulty sleeping at night. The hospital is an unfamiliar place and some people complain of vivid dreams waking them. Nurses may need to monitor your vital signs (blood pressure and heart rate) at night, which can interrupt your sleep.
  • To sleep more comfortably, take your pain medication at bedtime. It may help to use several pillows to support your head, chest and back. Try not to sleep too much during the day so you will be able to sleep at night.

Discharge Plans

  • Most patients stay in the hospital seven to 14 days after heart transplant surgery. Remember, everyone recovers at a different pace. The transplant team will meet with you daily to update you about your progress and your discharge plan.
  • When you are discharged from the hospital, you will receive instructions about your home care from your transplant team and the nursing staff. It is important that you understand your treatment plan. If you have questions, please ask.

Caring for Your New Heart - at Home

  • A new heart is a precious gift. Only a small number of those who need a heart transplant receive them. You have been fortunate enough to receive a new heart.
    It is up to YOU to take excellent care of yourself and to follow your medical plan.

Preventing Infection in the Hospital»

After your transplant, you will be taking medications called "immunosuppressants." These drugs prevent your body's immune system from rejecting your new heart. However, they also increase your risk for infection.

During your hospital stay, you should begin to take steps to avoid infection. Many of these good habits will also help you prevent infection at home.

Practice good hygiene
  • Frequently wash your hands with soap and warm water, especially after using the bathroom and touching soiled clothing or bedding. Lather well, rubbing your hands back and forth together, to clean all surfaces, including the nail beds and the webbing between your fingers.
  • You will have bedside baths for about the first week in the hospital. After that, it is recommended that you shower every day. If you have oily hair, try to keep it clean and pulled away from your face.
  • Wash your face in the morning and at bedtime, using a mild soap and washcloth. To help prevent acne, keep your skin as clean and oil-free as possible.
Take care of your mouth and teeth
  • Examine your mouth and gums daily.
  • Use dental floss daily.
  • If a mouth sore develops, eat foods that are warm or at room temperature and avoid eating acidic foods and beverages (such as tomatoes and oranges) Also let your care team know.
  • See your dentist regularly every six months.
Protect your skin from scratches, sores and other irritations that might lead to infection
  • If you have a cut (even if it is small), clean the area will with soap and water or hydrogen peroxide, dry your skin, and cover the cut with a sterile bandage.
Your friends and family can help prevent infection. They can:
  • Not bring any food from outside sources, including from home. Plants, balloons and flowers (fresh or silk) are allowed.
  • Follow the transplant unit's guidelines about hand washing.
  • Not visit if they have cold or flu symptoms (such as fever, cough or runny nose). They may visit when they are feeling well.
Signs of Infection

If you have symptoms of infection, notify your health care provider right away. Look for these signs:

  • Fever over 101 degrees Fahrenheit (38.4 degrees Celsius)
  • Sweats or chills
  • Skin rash
  • Pain, tenderness, redness or swelling
  • Wound or cut that will not heal
  • Red, warm or draining sore
  • Sore throat, scratchy throat or pain when swallowing
  • Sinus drainage, nasal congestion, headaches or tenderness along upper cheekbones
  • Persistent dry or moist cough that lasts more than two days
  • White patches in your mouth or on your tongue
  • Nausea, vomiting or diarrhea
  • Flu-like symptoms (chills, aches, headache or fatigue) or generally feeling "lousy"
  • Trouble urinating: pain or burning, constant urge or frequent urination
  • Bloody, cloudy or foul-smelling urine

Acute Heart Failure Specialty Unit and Self-Management»

While you are in the hospital, your cardiologist may treat your heart failure symptoms in a special critical care unit. Physicians and nurses in this unit are specially trained to provide aggressive medical care and education to you and your family.

You may be asked to keep track of the fluids you drink (your "intake"), the amount you urinate (your "output") and your weight every day you are in the hospital.

You will also be provided with written handouts about weight control, medications and self care expectations. Try to review this information and if you have any questions, please ask. If your hospital stay is long, you will also take part in our "self-medication program."

Nutrition in the Hospital»

Nutrition therapy is an essential component of your transplant medical care at Cleveland Clinic. We provide three meals a day with snacks, as requested or designed by your dietitian.

The meals you receive are calculated for the amount of fat, sodium, and fluid that are specific to your needs. The foods you eat work in conjunction with your medications and other medical therapies for an optimal health outcome.

Therefore, it is important that you do not receive foods from an outside source—including restaurants and vending machines throughout the hospital, food from home, as well as food from neighboring restaurants—because we are not able to specifically determine the fat, sodium or fluid content of these foods. In addition, we are not able to determine if other foods were prepared safely.

The Nutrition Therapy Department and your health care team appreciate your cooperation with this important guideline.

If you have any questions about this, please talk with your dietitian.

Balloon Pumps and Assist Devices»

An intra-aortic balloon pump is a temporary mechanical assist device placed in patients with severe heart failure who do not respond to oral or intravenous (IV) medications.

The balloon pump helps to reduce the workload of the heart muscle. It consists of a large balloon catheter that is inserted into an artery in the groin. The catheter is connected to a computer console placed next to the bed. The computer coordinates inflation and deflation of the balloon.

While the heart is at rest (in between heart beats), the balloon inflates, enhancing blood flow to the arteries that supply the heart muscle. During the heart's contraction, it deflates, allowing the heart to squeeze out more blood with less work.

 

While the balloon pump is in place, it is very important to lie flat in bed. The nurse will assist the patient in turning from side to side to help increase comfort. While this device is in place, a pumping sound will be heard which can be scary to some patients. It is the sound of the machine, not the heart pumping. In most instances, the use of a balloon pump is limited to one week or less.

An implantable left ventricular assist device (LVAD), (called the HeartMate II) is a pump, weighing a few pounds. The pump is surgically implanted in patients with very severe heart failure. The inlet portion of the pump is connected to the tip of the heart.

The outlet portion of the pump is connected to the aorta inside the chest. As such, LVAD implantation is a major surgical procedure. Unlike the intra-aortic balloon pump, the LVAD allows for increased mobility over time.


After a recovery period, patients begin to gradually increase their activity, begin to care for and manage their device, and may eventually leave the hospital. These patients are listed as Status IA/B candidates.

Rights and Responsibilities of Heart Transplant Patients»

Cleveland Clinic is committed to providing you with respectful care as we meet your health care needs during your heart transplant. For this reason, we want you to have a summary of your rights as a heart transplant patient.

  1. You have a right to considerate and respectful care as you go through the heart transplant process.
  2. You have the right to participate in the development and implementation of your plan of care. You will not be denied access to care due to race, creed, color, national origin, sex, age, sexual orientation, disability, or source of payment. 
  3. You have the right to information about your heart transplant diagnosis, condition, and treatment in terms that you can understand in regard to your heart transplant or any medical procedure at Cleveland Clinic. 
  4. You have the right to refuse treatment to the extent permitted by law and to be informed of the possible consequences of the refusal.
  5. You, as a heart transplant patient, are entitled to be free from all forms of abuse or harassment. You have the right to make or have a representative of your choice make informed decisions about your care. 
  6. You have the right to formulate advance directives prior to your heart transplant and have them followed. 
  7. You have the right to have your family or representative of your choice and your own physician notified of your admission to the hospital for a heart transplant. 
  8. You have the right to appropriate assessment and management of pain. 
  9. You are entitled to be free from any forms of restraint or seclusion as a means of convenience, discipline, coercion, or retaliation. Seclusion and restraint for behavior management can only be used in emergency situations. 
  10. You are entitled to information about rules and regulations affecting your care or conduct. 
  11. You have the right to know the names and professional titles of your physicians and caregivers.
  12. You have the right to know that Cleveland Clinic is a teaching institution. Resident physicians, student nurses, and other supervised health care providers in training may become involved in your care and treatment before, during, and after your heart transplant. 
  13. You can request a change of provider or second opinion if you choose. 
  14. You have the right to personal privacy and to receive care during the heart transplant process in a safe environment. 
  15. You have the right to prompt and reasonable response to any request for services within the capacity of the health care facility. 
  16. You have the right to express concerns or grievances regarding your care to the hospital staff or to the Ombudsman office.
  17. The confidentiality of your clinical and personal records will be maintained. 
  18. You have the right to see your medical record within the limits of the law. 
  19. You have the right to an explanation of all items on your bill. 
  20. You have the right to be provided with information about your continuing health care needs and planning for care after you leave the hospital and, as appropriate, after an appointment with your physician or other caregiver.

Patient's Responsibilities – General

This is a summary of your responsibilities as a patient at Cleveland Clinic.

  1. It is your responsibility to provide accurate and complete information about all matters pertaining to your health, including medications and past or present medical problems. 
  2. You are responsible for following the instructions and advice of your healthcare team. If you refuse treatment or do not follow the instructions or advice, you must accept the consequences of your actions. 
  3. It is your responsibility to notify a member of the healthcare team if you do not understand information about your care and treatment. 
  4. You are responsible for reporting changes in your condition or symptoms, including pain, to a member of the healthcare team. 
  5. It is your responsibility to act in a considerate and cooperative manner and to respect the rights and property of others. You are responsible for following the rules and regulations of the healthcare facility. For outpatients, you are expected to keep your scheduled appointments or to cancel them in advance if at all possible. 
  6. It is your responsibility to pay your bills or make some arrangement with the facility to meet your financial obligations.

Patient's Responsibilities – As a hospital patient awaiting transplant

We believe it is important for you to be an active participant in your healthcare. This is a summary of your responsibilities in the hospital as you await your heart transplant.

  1. You are responsible for weighing yourself daily, before breakfast, and recording your daily weights in your weight record. 
  2. You are responsible for keeping track of your fluid intake and urinary output every day. You will be given logs to record this information. 
  3. You are expected to follow your prescribed dietary guidelines and fluid restrictions. Please tell your family members and friends NOT to bring in food or snacks from home or from the vending machines. Please talk with your dietitian or healthcare team if you have any questions about this guideline. 
  4. You are expected to participate in the Cardiac Rehabilitation (CHIRP) program when you are physically able to participate. 
  5. You are expected to attend educational sessions provided by your healthcare team when you are able. 
  6. When your healthcare team provides the "ok", you will be allowed to have "off floor" privileges. This means you can leave the unit for about 20–30 minutes. You must notify your caregiver of your plans. It is your responsibility to return on time and to check back with your nurse when you return (by calling the unit secretary or physically checking in with your nurse).

The CTICU

When you wake up, you will be in the Cardiothoracic Intensive Care Unit (CTICU). A team of specially trained physicians and nurses will monitor your care and help you recover safely and quickly.

The CTICU is a busy place. You can expect bright lights and many noises. These noises are the monitors and different types of equipment. Many of these machines continuously monitor your heart rate and rhythm and blood pressure to help your surgeon determine how well your heart is functioning. Try to tune the equipment noises out and relax.

Endotracheal Tube

You will become aware of the endotracheal tube (breathing tube) that was inserted while you were asleep. The tube is connected to a respirator that assists your breathing. While it is in place, you will not be able to talk or swallow.

The nurse will anticipate your needs and ask you questions that require only a yes or no answer. Nod or shake your head yes or no. The breathing tube will be removed when you are fully awake and able to breathe on your own. Once it is removed, you will be able to talk, however you may have a sore throat and a hoarse voice.

Deep breathing and coughing exercises, as well as changes in position, are extremely important to prevent postoperative pneumonia.

Deep Breathing and Coughing Exercises

When the breathing tube is removed, the nurses and respiratory therapists will help you do deep breathing and coughing exercises to inflate your lungs and cough out any secretions that have settled in your lungs during surgery.

Changing Positions

You should change your position frequently while in bed.

Drainage Tubes

You will have drainage tubes, called "chest tubes", to drain fluid which accumulates around your heart and lungs during surgery. The drainage from these tubes will be bloody at first. The tubes are removed when the drainage is clear and decreases in amount.

IV Lines

Fluids and medications are administered through an IV line in your neck. Immunosuppressant drugs will be administered through this IV until you are able to take fluids and eat.

Pain

You may experience pain when you first wake up. You will be given medications to control pain. Our pain control program is designed to keep you as comfortable as possible. However, if the medications affect your breathing and/or blood pressure, your physician may decrease the amount of pain medication given to you.

If you would like to use other methods of pain control, such as soothing music or relaxation tapes, small tape players with headphones are allowed in the CTICU.

Change in Heart Rate

It is normal for your new heart to beat faster at rest. Also, your heart rate will not rise as quickly with increases in activity. This may cause you to feel light-headed if you get up too fast from a resting position. You will need to get up slowly from lying or sitting and will need to warm-up when exercising.

Length of Stay

The length of stay in the CTICU varies with each patient. Your transplant team will determine the best time to be transferred to the Transplant Special Care Unit. This usually takes place within 2-3 days after transplant.

Types of Infections

Because you are taking immunosuppressant medications, certain viruses or bacteria which are normally harmless can cause you to become sick. These are called "opportunistic infections." The types of infections include:

  • Bacterial
  • Viral
  • Fungal
  • Other (pneumocystis and tuberculosis)

Bacterial Infections

  • Bacterial infections are the most common types of infections that can occur after transplant. Bacteria are found on the skin or in body cavities. Normally, these bacteria do not cause problems, but may lead to infections when you are taking immunosuppressant medications.
  • Bacterial organisms include staph, strep, and pseudomonas, among others.
  • Bacterial infections may occur at any site within the body including the blood, lungs, urinary system, and incisions. If a bacterial infection is suspected, you will need to come to the hospital for blood, urine, and sputum cultures.
  • A culture involves taking a sample of your blood, urine, or sputum (phlegm). The sample is evaluated under a microscope 24, 48, and 72 hours after it is taken to detect evidence of any bacterial growth. If bacterial growth is found, it is identified and tested against the panel of antibiotics to determine which antibiotic is effective in killing that bacteria. You will start taking an antibiotic either by mouth or intravenously (IV), depending upon the severity of the infection.
  • It is very important to finish all of the prescribed antibiotics, even if you are feeling better after a few days. If all of the antibiotics are not taken, some of the bacteria may not be killed, and will continue to multiply, causing another infection that may be resistant to the original antibiotic.

Viral Infections

  • Viruses are the most common cause of infections in transplant patients after the first month. Viral infections include:
    • CMV (Ganciclovir)
    • Herpes (simplex or zoster)
    • Hepatitis
  • During the pre-transplant screening, you were tested for previous exposure to CMV, herpes, hepatitis, and HIV.
  • Testing positive for previous exposure to hepatitis B or C would not prevent you from being considered for transplant if there is no liver damage present.
CMV (Ganciclovir)
  • CMV is a common infection following heart transplant, accounting for about 25 percent of all post-transplant infections. More than half of all Americans have had previous exposure to CMV, a benign illness, causing flu-like symptoms. If you or your donor had prior CMV exposure, you will be treated with oral valganciclovir for month one, then acyclovir for months two and three after the transplant to prevent CMV infection from occuring.
  • When you are taking immunosuppressant medications, CMV may cause a more serious illness and may result in hospitalization. Symptoms can range from feeling "lousy", fever, chills, diarrhea, abdominal pain, headache, cough, or flu-like symptoms. Call your doctor if any of these symptoms occur.
Herpes
  • The herpes virus may affect as many as 40 percent of the transplant population. Once you have herpes, it lives in a dormant state in your body. Sometimes, it becomes active and most commonly presents itself as a cold sore or fever blister on your lips, esophagus, genital area or anus. If you have had a herpes sore in the past, you will most likely have one again, often in the same place.
  • The herpes virus can also appear as "shingles." Shingles are painful blisters along the pathways of nerves on the surface of the skin. The most common sites are the chest, sides of abdomen, and face.
  • Avoid anyone with active chicken-pox. It can cause a more severe infection in transplant recipients who were never exposed to the virus, or it may cause shingles in those who previously had chicken-pox.
  • Herpes is not life-threatening, but it can be uncomfortable. To prevent a more serious infection, take your herpes medication (Acyclovir) at the first sign of a herpes sore. Acyclovir may be given intravenously, by mouth, or as a topical cream, depending upon the severity of the illness.
Hepatitis
  • There are several types of hepatitis: Type A, Type B, and Type C.
  • Hepatitis may be contracted through hepatitis-contaminated blood, body secretions, dirty needles, food, contaminated water, sexual intercourse or exchange of body secretions.
  • Symptoms of hepatitis include:
    • Jaundice (yellowing of the skin)
    • Nausea
    • Vomiting
    • Abdominal pain
    • Fever
    • Weakness
    • Fatigue (feeling over-tired)
  • Treatment of hepatitis is difficult, and prevention is best.
  • Some patients may receive a heart from a donor who tested positive for hepatitis B or C, but who had no symptoms or clinical history of hepatitis. In this case, special follow-up after transplant may be required.
HIV
  • HIV is the virus that produces AIDS (acquired immune deficiency syndrome). The HIV virus may be contracted through sexual contact (heterosexual or homosexual), contaminated blood products, intravenous drug use with contaminated needles, or from mother to child by way of the placenta or birth canal.
  • There is an extraordinarily small chance that HIV virus may be contracted through an organ transplant. All blood, organ, and tissue donors are thoroughly screened for HIV infection through a careful screening of medical and sexual history and by blood testing. The history of the donor is obtained as completely as possible because blood testing may not be 100 percent sensitive for the virus.
  • Although there is a very small chance that you could contract HIV through an organ transplant or blood transfusion, you must know that every precaution has been taken to assure that the organ and blood are safe. Every effort is made to select donors who will not transmit infection. The transplant team always attempts to make recommendations in your best interest.

Fungal Infections

  • Fungal infections may range from very mild (thrush) to life-threatening. Examples of fungal infections include:
    • Candida
    • Aspergillosis
    • Histoplasmosis
Candida
  • Candida is a yeast that grows in moist areas of the body, such as the mouth, arm pits, groin or genital area. Candida is also known as thrush or monilia.
  • When it occurs in the mouth, it looks like white, fuzzy patches over the roof of your mouth, on your tongue, your throat, or in your esophagus (the tube that goes from your mouth to your stomach). It can be treated with a mouthwash (Nystatin) or troches (Mycelex).
  • When it occurs on the skin, candida can be treated with several types of lotions or creams.
  • Women can get yeast infections in the vagina. Vaginal yeast infections cause itching and drainage that is white, lumpy and foul smelling.
  • If Candida spreads inside the body, it can become a more serious infection, requiring intravenous treatment with antifungal medications such as Amphotericin B.
Aspergillosis
  • Aspergillosis may be contracted by breathing fungal spores in damp, dusty places such as attics, basements, barns, or constructions sites.
  • Care should be taken to avoid these places, or if necessary, wear a face mask in those areas.
Histoplasmosis
  • Histoplasmosis is an air-borne fungal disease found in bird droppings.
  • Transplant recipients should avoid exposure to bird droppings, especially in enclosed areas.

Other Infections

Pneumocystis
  • Pneumocystis is a pulmonary (lung) infection that occurs mainly in patients who are taking immunosuppressant medications. Symptoms include cough, fever, malaise (feeling lousy), and shortness of breath. Transplant patients are given Bactrim DS every other day for the first year after transplant to help prevent this infection. Patients who are allergic to sulfa drugs may be treated with Pentamidine Aerosol every four to six weeks, or Dapsone instead of Bactrim.
Tuberculosis
  • Tuberculosis (TB) is a mycobacterial infection that is contracted by breathing infected air-borne droplets. Potential transplant recipients may receive a skin test during the transplant evaluation to determine previous exposure to TB.

    Symptoms of tuberculosis include:

    • Pneumonia-like symptoms
    • Cough
    • Coughing up blood
    • Night sweats
    • Fever

Your immune system is made up of mostly white blood cells that fight infection. It can also work against your new heart, treating it as an unwanted, foreign object. To prevent this from occurring, you take immunosuppressant medications - to suppress or work against your natural immune system so that rejection does not occur.

However, the same medications that help prevent rejection also increase your risk for infection. For the first six months after surgery, the likelihood for rejection is highest, so you will be taking higher doses of these medications. This makes you even more vulnerable to infection. You must take caution to protect yourself from infection.

Recovery at Home»

Recovery after your heart transplant is similar to the recovery after any heart surgery. It takes about six to eight weeks for your incisions to heal.

At first, you may have some muscle or incision discomfort in your chest during activity. Itching, tightness, or numbness along your incision are also normal. Follow the guidelines below to ensure proper healing:

Keep your incisions clean and dry.

  • If your incisions are healing you may take a shower (no longer than 10 minutes).
  • Use gentle soap and water to cleanse the site. Do not saturate.
  • Do not rub your incisions with a washcloth until the scabs are gone and the skin is healed.
  • Do not use any ointments, lotions or dressings on the incision.

Protect your incision.

  • Do not drive a car for six to eight weeks after your surgery. Your cardiologist will clear you to drive.
  • Do not lift anything over 10-20 pounds for six weeks after your surgery.

Nutrition.

Good nutrition is an important part of healing. You will need to eat a diet that is low in salt and fat, but also one that includes a variety of healthy foods to help you heal. If you are having trouble with your appetite or understanding your dietary guidelines, please ask your transplant team to speak to a dietitian.

Signs of infection - what to look for.

If you have any of these signs of infection, call your doctor.

  • Increased drainage and/or oozing from the incision
  • Increased opening of the incision
  • Redness around the incision
  • Warmth along the incision line
  • Increased body temperature (greater than 101 degrees F or 38.4 degrees C)

Call your doctor:

  • If you have any signs of incision infection.
  • If your sternum (breastbone) feels like it moves, or it pops or cracks with movement.

Taking your medications as directed

You will need to take medications the rest of your life to prevent your body from rejecting your new heart and to treat other medical problems. Always take your medications as directed. By the time you leave the hospital, you should be taking all of your medications without help from the nurses.

You must know:

  • The names of your medications and what they look like
  • What they are used for
  • The dosage (how much to take and how often)
  • The possible side effects
  • What times to take them

Points to Remember

  • Always report changes in your condition to your transplant coordinator or transplant cardiologist.
  • Never stop or change your medications without first consulting your transplant coordinator or transplant cardiologist.
  • Always call the transplant coordinator before taking any new medications other than those prescribed by the transplant team. This includes any over-the-counter medications, nutrition supplements or herbal therapies. Some medications may interact with your transplant medications and cause side effects. For example, St. John's Wort affects your cyclosporin level and should never be taken after transplantation.
  • Take your medications at the same time every day. Develop a system that helps you remember to take your medications at the right time(s) each day. Keep a record of your medications and when you take them. Bring an updated list of your medications and records to each follow-up appointment.
  • If you forget to take a dose, resume your normal medication schedule.
  • Do not take a double dose at one time.
  • If you are ill and vomit soon after taking your medication or have diarrhea for more than one day, call your doctor. Do not take a second dose of your medication without talking to your doctor.
  • Special containers, such as weekly pill boxes may help you remember to take your pills. But, store all remaining medications in their proper containers, with medication name, dosage, and expiration date listed, to avoid confusion and loss of potency.
  • Keep all medications in a dry place, away from moisture, heat, or direct light.
  • Keep all medications with you when you travel. Do not pack them in suitcases that may be lost or detained.
  • Always bring your medications with you to your follow-up visits.
  • Don't wait until you're almost out before you refill your prescriptions. Some pharmacies need to order your immunosuppressants, so keep ahead of schedule. Check your supply before vacations, holidays, and other occasions when you may not be able to obtain it. Your Transplant Coordinator is available to call in refill orders to your pharmacy during normal office hours (Monday through Friday 8:00 a.m. - 4:00 p.m.)
  • Talk to your transplant coordinator if you are uncertain about a medication or its dose.
  • Call the transplant team if you have any side effects.

Immunosuppressive Drugs

  • Cyclosporine
  • Azathioprine
  • Mycophenolate Mofetil
  • Prednisone
  • Tacrolimus

Anti-Infective Agents

  • Co-trimoxazole
  • Acyclovir
  • Ganciclovir
  • Nystatin
  • Clotrimazole

Anti-Ulcer Medications

  • Ranitidine
  • Famotidine
  • Omeprazole

Anti-Hypertensive Medications

  • Calcium Channel Blockers
  • ACE Inhibitors
  • Clonidine
  • Minoxidil
  • Diuretics

Lipid Lowering Medications

These medications are used in conjunction with a low-cholesterol diet to help reduce your lipid levels and to help reduce the risk of traditional and/or transplant coronary artery disease.

Preventing Infection at Home»

Remember these points to protect yourself from infection:

  • Take care of cuts or wounds and wash hands thoroughly:

Keep minor cuts and wounds clean. Wash them with soap and water or hydrogen peroxide, dry your skin and cover the cut with a sterile bandage.

Go to the emergency room near your home if you have a deep cut, or one that bleeds a lot. Be sure to tell the health care providers that you are a transplant patient.

Call your doctor if your wounds become red and drain anything but clear liquid.

Frequently wash your hands with soap and warm water, especially before preparing food, and after using the bathroom or after touching soiled linens or clothes. Lather well, rubbing your hands back and forth together, to clean all surfaces, including the nail beds and webbing between your fingers.

Shower or bathe daily using a mild soap. Special soap is not needed at home. If you have dry skin, apply a mild skin lotion after bathing.

Prednisone and cyclosporine, two medications that you must take, can cause acne.

Keep your skin as clean and oil free as possible and use a washcloth and mild soap. You may want to avoid soaps that contain pumice or coconut oil. Some over-the-counter acne products may be helpful, but be sure to use non-comedogenic skin care products and cosmetics

Make an appointment with a dermatologist (skin doctor) if acne becomes a problem.

Overexposure to the sun can also cause skin irritation as well as cause dry skin, sunburn, blisters and can increase the risk of skin cancer. Some of your medications may make you more sensitive to the sun's rays.

Always wear a sunblock lotion, sun protective factor (SPF) of 15 or greater when outdoors in bright sunlight. Wear a broad-brimmed hat and protective clothing such as light pants instead of shorts, long-sleeved shirt, and socks to protect your feet and lower legs. When swimming, wear a T-shirt over your bathing suit.

Check your skin for new markings; especially new irregular shaped, raised, red, black or brown markings. If you notice any new skin markings, see a skin doctor (dermatologist) for prompt evaluation and treatment.

  • Practice good dental hygiene:

In some patients, cyclosporine (Neoral) can cause gums to swell, become tender, and sensitive to heat and cold. Poor diet can also cause gum disease. Sore, bleeding gums can easily become infected. Good dental care may help prevent infection.

Examine your mouth and gums every day. If you have red or swollen gums, contact your transplant coordinator. Be sure to brush your teeth and gums thoroughly after each meal with a small, soft toothbrush and fluoride toothpaste. Use foam sticks instead of a toothbrush if your gums are especially sore. Also use dental floss every day and keep dentures clean and fitting properly.

Your doctor may tell you to use an antibacterial mouthwash rinse. Avoid commercial mouthwashes or throat lozenges that contain a high concentration of alcohol - they may irritate or dry your mouth.

Prepare a gargle by dissolving one teaspoon each of salt and baking soda in a quart of warm water. (A smaller portion of this can be made by stirring 1/4 teaspoon each of salt and baking soda into eight ounces of warm water.) Rinse your mouth and gargle with this solution at least four to six times a day, especially after meals and before going to bed.

Have your teeth cleaned and checked by a dentist at least every six months. Tell your dentist that you have had a transplant before your appointment so he or she can take precautions to prevent possible infection. Also be sure to call your transplant coordinator for an antibiotic prescription at least one week before any of your dental appointments.

If a mouth sore develops, eat foods that are warm or at room temperature and avoid eating acidic foods and beverages (such as tomatoes and oranges).

  • Take action to prevent infection by avoiding people who have colds or the flu:

Friends and family will want to visit you when you return home. It is important to teach them how they can help you best.

Limit your visitors for the first couple weeks and instruct visitors to avoid sending or bringing live plants. If your visitors have cold or flu symptoms, ask them to return when they are feeling well. Before visiting with an infant or child, check with the Transplant Team.

  • Keep your immunizations current:

Get a flu shot every fall (by October 15). You cannot get the flu by getting the immunization. Encourage your adult family members to get flu shots also. You can arrange to get the flu shot from your doctor or Transplant Team.

Ask your doctor if you should get a pneumovax (pneumonia) vaccine. Ask your doctor how often you should get this shot, and whether your adult family members should also get the shot.

Do not receive any vaccines (other than tetanus or flu shot) without first talking to your doctor. Do not receive any live virus vaccines or be in contact with people who recently received one. A live virus vaccine may trigger an infection in someone who is taking immunosuppressant medications.

Make sure you receive the 3-shot Hepatitis B series.

  • Be sure your environment is as safe as possible:

Do not go into crowded places for the first three months after your transplant. If you cannot control how far away you can stay from other people, it is probably a crowd. Do not work in or visit any form of construction site.

Keep your house clean and free of excess dust. Dust can be harmful to you after your transplant. If you absolutely must go near this type of area, wear a mask provided by the Transplant Team. You may have pets, but have other family members or friends clean the litter box, cage or yard. In addition, do not add any new pets to your home, especially birds.

If you enjoy fishing, use caution with fish hooks, fish fins, and fillet knives. Protective gloves should be worn when handling these items. Also avoid gardening for the first six months after your transplant. Wear garden gloves when gardening. Soil has many molds and fungi that can be sources of infection. Do not mow the lawn yourself and avoid areas where people are mowing. A lawn mower blows bacteria from the grass which can cause an infection.

Stay away from hot tubs, whirlpools, saunas or steam baths. Germs tend to multiply in these.

Be sure to ask your Transplant Team when you can safely return to work or school.

Preventive Care Recommendations»

Adult Females:

Screening For Breast Cancer

Starting at Age

  • Starting at age 40*
  • *If your grandmother, mother or sister have had breast cancer, you may want to begin screening at age 35 or as recommended by your doctor.

Preventive Care

  • Breast physical examination and screening mammography.

How Often?

  • Breast physical exam every year by a health care provider.
  • For women after transplant: breast physical exam and screening mammography should be performed once a year.

Screening For Cervical Cancer

Starting at Age

  • Starting at age 18

Preventive Care

  • Pap smear and pelvic examination.

How Often?

  • Every year for three years starting at age 18, then every three years if all three Pap smears were normal and NPV negative and if you do not have any of these risk factors:
    • HIV-positive
    • Cigarette smoker
    • Multiple sex partners
    • Prior abnormal Pap smear or cervical dysplasia
  • If any of these risk factors apply, then have a Pap smear and pelvic exam every year.
  • For women after transplant: Pap smear and pelvic examination should be performed every year, regardless of age.

Screening For Cholesterol

Starting at Age

  • 40

Preventive Care

  • Total cholesterol.
  • HDL every five years.

How Often?

  • If you have a personal or family history of cardiovascular disease, you may require more frequent screening and at an earlier age.
  • After transplant: Cholesterol should be checked at least once a year.

Screening For Colorectal Cancer


Starting at Age

  • 50

Preventive Care

  • Stool testing for blood plus sigmoidoscopy or colonoscopy.

How Often?

  • Stool testing every year.
  • Sigmoidoscopy every five years.
  • Colonoscopy every 10 years.
  • If you have a parent, brother or sister who have had colorectal cancer, you should have a colonoscopy every five years, starting at age 40.

Adult Males:

Screening For Cholesterol

Starting at Age 30

Preventive Care

  • Total cholesterol triglycerides, HDL and LDL.

How Often?

  • Once per year.
  • If you have a personal or family history of cardiovascular disease, you may require more frequent screening and at an earlier age.
  • After transplant: Cholesterol should be checked at least once a year.

Screening For Colorectal Cancer


Starting at Age

  • 50

Preventive Care

  • Stool testing for blood plus sigmoidoscopy or colonoscopy.

How Often?

  • Stool testing every year.
  • Sigmoidoscopy every five years.
  • Colonoscopy every 10 years.
  • If you have a parent, brother or sister who have had colorectal cancer, you should have a colonoscopy every five years, starting at age 40.

Screening For Prostate Cancer

Starting at Age 50

Preventive Care

  • Digital rectal exam and PSA Testing.

How Often?

  • Digital rectal exam every year.
  • PSA testing every year.

Dental Care

Why is good dental care important?

In some patients, cyclosporine (Neoral) can cause gums to swell, become tender, and sensitive to heat and cold. Poor diet can also cause gum disease. Sore, bleeding gums can easily become infected. Good dental care may help prevent infection.

Here are some general guidelines:

  • Examine your mouth and gums every day. If you have red or swollen gums, contact your transplant coordinator.
  • Brush your teeth and gums thoroughly after each meal with a small, soft toothbrush and fluoride toothpaste. Use foam sticks instead of a toothbrush if your gums are especially sore.
  • Use dental floss every day.
  • Your doctor may tell you to use an antibacterial mouthwash rinse. Avoid commercial mouthwashes or throat lozenges that contain a high concentration of alcohol - they may irritate or dry your mouth.
  • Keep dentures clean and fitting properly.
  • Prepare a gargle by dissolving one teaspoon each of salt and baking soda in a quart of warm water. (A smaller portion of this can be made by stirring 1/4 teaspoon each of salt and baking soda into eight ounces of warm water.) Rinse your mouth and gargle with this solution at least four to six times a day, especially after meals and before going to bed.
  • Have your teeth cleaned and checked by a dentist at least every six months. Tell your dentist that you have had a transplant before your appointment so he or she can take precautions to prevent possible infection. Also be sure to call your transplant coordinator for an antibiotic prescription at least one week before any of your dental appointments.
  • If a mouth sore develops, eat foods that are warm or at room temperature and avoid eating acidic foods and beverages (such as tomatoes and oranges).

Skin Care

A dermatology assessment will be done pre-transplant and annually post-transplant.

Follow these guidelines for skin care:

Taking Care of Cuts or Wounds
  • Keep minor cuts and wounds clean. Wash them with soap and water or hydrogen peroxide, dry your skin and cover the cut with a sterile bandage.
  • Go to the emergency room near your home if you have a deep cut, or one that bleeds a lot. Be sure to tell the health care providers that you are a transplant patient.
  • Call your doctor if your wounds become red and drain anything but clear liquid.
  • Have a tetanus shot every 10 years.
Daily Hygiene
  • Frequently wash your hands with soap and warm water, especially before preparing food, and after using the bathroom or after touching soiled linens or clothes. Lather well, rubbing your hands back and forth together, to clean all surfaces, including the nail beds and webbing between your fingers.
  • Shower or bathe daily using a mild soap. Special soap is not needed at home.
  • If you have dry skin, apply a mild skin lotion after bathing.
Acne

Prednisone and cyclosporine, two medications that you must take, can cause acne. To lessen skin problems:

  • Keep your skin as clean and oil free as possible.
  • Use a washcloth and mild soap.
  • Avoid soaps that contain pumice or coconut oil.
  • Some over-the-counter acne products may be helpful.
  • Use non-comedogenic skin care products and cosmetics.
  • Make an appointment with a dermatologist (skin doctor) if acne becomes a problem.
Sun Protection

Overexposure to the sun can cause dry skin, sunburn, blisters and increase the risk of skin cancer. Some of your medications may make you more sensitive to the sun's rays.

To avoid overexposure:

  • Always wear a sunblock lotion, sun protective factor (SPF) of 15 or greater when outdoors in bright sunlight.
  • Wear a broad-brimmed hat and protective clothing such as light pants instead of shorts, long-sleeved shirt, and socks to protect your feet and lower legs.
  • When swimming, wear a T-shirt over your bathing suit.
  • Check your skin for new markings; especially new irregular shaped, raised, red, black or brown markings. If you notice any new skin markings, see a skin doctor (dermatologist) for prompt evaluation and treatment.

Immunizations

Get a flu shot every fall. You cannot get the flu by getting the immunization. Encourage your adult family members to get flu shots also. You can arrange to get the flu shot from your doctor or Transplant Team.

Ask your doctor if you should get a pneumovax (pneumonia) vaccine. Ask your doctor how often you should get this shot, and whether your adult family members should also get the shot.

Do not receive any vaccines (other than tetanus or flu shot) without first talking to your doctor. Do not receive any live virus vaccines or be in contact with people who recently received one. A live virus vaccine may trigger an infection in someone who is taking immunosuppressant medications.

Make sure you receive the 3-shot Hepatitis B series and two shots Hepatitis A series (if you tested negative).

Living a Full Life Again»

During the months of illness before heart transplant surgery, you and your family made many adjustments. The purpose of having heart transplant surgery was to make you feel better and to live a full life again. Let's review some areas of life often affected by your transplant.

  • Return to Work
  • Finances
  • Family Adjustment
  • Dealing with Emotions
  • Sexual Activity

Daily Activity and Exercise Guidelines

Caring for your personal hygiene

By the time you leave the hospital after your heart transplantation, you should take care of all your personal hygiene, (bathing, shaving, dressing). Continue to perform these activities at home.

Light chores

It takes about six weeks for your sternum (breastbone) to heal after heart transplantation. During this time, you may do light household chores such as laundry, shopping, cooking, and washing dishes. But, do not lift objects that weigh more than 10 pounds. These include suitcases, grocery bags, full laundry baskets, pets or children.

Also avoid activities that require pushing or pulling heavy objects, such as shoveling snow or mowing the lawn. Your doctor will tell you when you can resume these activities during your heart transplantation follow-ups.

Driving after your heart transplantation

You may not drive for at least six weeks. However, you may be a passenger as often as you like. For the first two weeks after your heart transplantation, you may want to stick close to home to avoid infections or becoming overtired. Over time, increase your outings and begin to get back to activities you enjoy after your heart transplantation. Your doctor will tell you when you can begin driving a car.

Pace yourself

Spread your activities throughout the day. Schedule the most important ones early. Reschedule unfinished activities for another time. You may climb stairs, but you may need to slow your pace or rest midway if you become tired.

Get a good night's sleep

Many people complain of trouble sleeping for a time after any heart transplantation surgery. This can be due to the affects of anesthesia, discomfort related to healing, changes in your daily routine, or concerns you may have. Without enough rest, you may feel overtired and irritable. If you cannot sleep, try these tips:

  • If you have pain, take your pain medication about a half hour before bedtime. Arrange pillows to help keep you in a comfortable position.
  • Avoid napping too much during the day. But keep in mind that during your recovery it is important to balance activity with rest.
  • If you are nervous or anxious, talk to your spouse or partner. Get things off your mind.

Begin a Lifelong Exercise Program After Your Heart Transplantation

Regular exercise is a vital part of your new lifestyle. The transplanted heart is only 70 percent as efficient as a normal heart. So, you must exercise regularly to maintain physical fitness.

Exercise will help you:

  • Develop more stamina
  • Maintain your ideal weight by burning calories
  • Keep your muscles and bones strong and healthy
  • Lower your blood pressure, cholesterol, blood sugar levels
  • Manage stress and give you a sense of well-being

Exercise after your transplant

Your doctor or cardiac exercise specialist will give you a home program based on your needs, current abilities and the new response patterns of your heart. Follow these guidelines when you return home.

To be safe, follow these exercise tips:

  • Know the type and level of exercise that is right for you.
  • Exercise three to six times per week.
  • Set up a regular exercise schedule. This should be separate from your normal activities of daily living.
  • Exercise should be aerobic. Aerobic exercise involves large muscle groups and includes repetitive movement. Such activities include walking, cycling or swimming.
  • Exercise should include at least five minutes of warm-up and cool-down.
  • Work up to an exercise program that includes 40-60 minutes of activity, three to six days each week, at your appropriate intensity level.
  • Exercise at a "moderate" intensity. An appropriate amount of activity should not exhaust you.
  • Focus on increasing your distance or time - not speed.
  • Wear comfortable clothes and shoes.
  • Avoid exercising in temperatures below 30 degrees and above 80 degrees Fahrenheit.

Be alert for signs of exercising too hard. These include:

  • Excessive shortness of breath
  • Dizziness
  • Chest discomfort
  • Exhaustion

If these symptoms occur, stop the activity and rest. Call your doctor if these symptoms last longer than 20 minutes or if they occur on a regular basis.

Cardiac Rehab

In the hospital after your transplant, an exercise specialist provided basic guidelines on your exercise program. This is commonly referred to as Phase I Cardiac Rehabilitation. Upon discharge, it is important to continue with your exercise program.

A Phase II cardiac rehab program can help you learn about your transplant, lifestyle changes and assist you in maintaining your exercise program.

Phase II cardiac rehab is offered at Cleveland Clinic, or you can be referred to a program closer to your home.

For more information on Cardiac Rehabilitation, contact the Preventive Cardiology and Rehabilitation Program at 216.444.9353.

Return to Work

Before your heart transplant, you may have been on disability. With your new heart, your disability may be stopped. Most transplant patients are physically able to return to work. Studies have shown that people who return to work feel better about themselves and do better physically, as well.

Depending upon the type of work or your company's sick leave policy, you may or may not be able to return to your former job. However, we do not expect you to remain inactive.

If you are out of work, it is important to explore other job options for the future. You should look for ways to re-enter the job market. This may involve job retraining.

Vocational Rehabilitation Services (VRS) is available to provide you with many types of assistance to return to employment. This help can take the form of counseling, training, and job placement. VRS can provide training through technical schools, junior colleges, and colleges. A referral for these services can be made by your Social Worker.

Sometimes, after transplant, there are barriers to return to work. Some employers are hesitant to hire transplant patients. The "Americans With Disabilities Act" provides some protection from this discrimination.

This, together with education, can help employers begin to feel confident that transplant patients can be good, reliable employees. Patients who can maintain an employee status with their employers (whether active or on leave) during the wait for transplant seem to have an easier time returning to work after transplant.

Staying active is very important. If you are retired, volunteer for a local school, hospital, or charitable organization. This will allow you to remain physically and mentally active.

Finances

Finances may play a big part in your recovery and the outlook for the future. If you have concerns about your finances related to insurance, disability, medications or employment, please discuss this with your social worker. There are many resources available to help you.P lease call 216-445-7119 with any financial questions.

Family Adjustment

This may be a stressful time for your whole family. Roles may have changed during the pre-transplant period. Spouses, children, and other relatives may have taken over daily responsibilities. Now, it is time to re-establish your family roles and relationships.

Families feel better and cope better when they discuss each member's feelings about the transplant and plans for the future.

Young children may be overlooked in this process - whether they are your children or your grandchildren. It is important to discuss their feelings and fears as well. The transplant team social worker is available to help children and families adjust to illness and health.

Dealing with Emotions

After the excitement of the heart transplant, some people have feelings of a "let down." You or your family may notice mood changes or times of feeling "down" or "blue."

Other patients may become irritable. They may have quick bouts of anger or "fly off the handle" at little things. This may be related to high expectations after the transplant and attempting to live up to them. It may also be related to normal healing or medications (steroids). These are normal emotional responses that will diminish with time.

Remember, you need medications. Therefore, you must anticipate some side effects. As your doses are safely decreased, mood changes will lessen.

It may also help to share your feelings with your spouse, a friend, or clergyman. Open discussion of feelings will help you and your family understand how you feel. Support groups are available for patients who have had transplants.

If you still don't feel quite right after the early stages of recovering, and you feel your emotional changes are interfering with your ability to enjoy life, tell a member of the transplant team. Supportive counseling may be helpful.

For more information:

Sexual Activity

Many patients and their partners feel nervous about resuming sexual activity after surgery. The amount of energy it requires to perform intercourse with a spouse or regular partner is similar to climbing about one or two flights of stairs or walking about one half mile (0.8 km) at a brisk pace.

If you cannot perform these activities without getting angina, or shortness of breath, or becoming overtired, please allow additional recovery time before resuming sexual activity. For the first six to eight weeks, you may need to use a low stress position to limit pressure or weight on the breast bone. Keep in mind that a sexual relationship has both physical and emotional aspects.

  • Talk openly with your partner.
  • Have sex when you are rested and physically comfortable.
  • Create realistic performance expectations - it may take time to return to an active sex life.
  • Relax and focus on lovemaking not on your new heart or any past failures.
  • Be caring, honest and loving with each other.

Anxiety for either partner as well as some medications may interfere with sexual arousal and performance. Discuss any concerns with your doctor.

Soon, you and your partner will return to a satisfying emotional and physical relationship.

Birth Control

  • Women must use some form of birth control after transplant.
  • Let us know if you need to see a doctor for birth control.
  • Women who wish to become pregnant should discuss this with their doctor.

Substances to Avoid

As a heart transplant patient, you have agreed to avoid tobacco and illicit drugs and to limit alcohol. All of these substances can be harmful. There are several reasons for limiting alcohol:

  • Alcohol is an appetite stimulant.
  • Most alcoholic beverages contain no vitamins or minerals, but plenty of calories.
  • Increased alcohol consumption can cause blood triglyceride levels to rise, increasing the risk of coronary artery disease.
  • Cyclosporine levels may be affected by alcohol.

Limit your daily alcohol intake to one 6-ounce glass of table wine, or one 12-ounce beer, or 1.5 ounces of distilled liquor (gin, rum, vodka, whiskey) per day.

If you need help in avoiding these substances, please contact your doctor, nurse, or social worker.

Complications»

Heart Transplant surgery is a major operation and therefore may involve complications. Below is a list of possible complications after surgery. Our goal is to minimize your risk, but always educate you on what might occur.

Hypertension (HTN)

Cause
  • Cyclosporine
  • Prednisone
  • Previous hypertension
Prevention/Action
  • Monitor blood pressure
  • Exercise regularly
  • Follow a low-salt diet
  • Take anti-hypertensive medications
  • Avoid weight gain
  • Follow-up with your doctor regularly

Acute Rejection

Cause
  • Natural immune system
  • Stopping medications
Prevention/Action
  • Biopsy
  • X-ray
  • Heart function analysis
  • Report rejection symptoms
  • Take immunosuppressants
  • Follow-up with your doctor regularly

Infection (there's always an increased risk for infection after transplant)

Cause
  • Immunosuppressants
Prevention/Action
  • Avoid people who have a cold, flu or other illness
  • Follow good personal hygiene
  • Frequently wash hands

Kidney Dysfunction

Cause
  • Cyclosporine
  • Other medications
  • Heart failure
  • Hypertension
Prevention/Action
  • Monitor creatinine
  • Monitor cyclosporine levels
  • Monitor blood pressure
  • Take anti-hypertensive medications
  • Follow-up with your doctor regularly

Bone Marrow Suppression

Cause
  • Immunosuppressants
Prevention/Action
  • Monitor white blood cell count
  • Follow up regularly with your doctor

Increased risk of cancer—especially skin and lip cancer

Cause
  • Immunosuppressants
  • Sun exposure
  • Smoking
Prevention/Action
  • Reduce sun exposure and wear protective clothing, use sunscreen
  • Don't smoke!
  • Follow-up with your doctor regularly

Bone Loss/Weakness

Cause
  • Steroids
Prevention/Action
  • Follow-up with your doctor regularly
  • Female patients: ask your doctor about taking estrogen supplements
  • Exercise regularly

Impotence

Cause
  • Hypertension
  • Pre-transplant condition
  • Medications
Prevention/Action
  • Monitor your blood pressure as recommended
  • Take anti-hypertensive medications as prescribed
  • Ask your doctor for a urological evaluation
  • Follow-up with your doctor regularly

Liver Disease

Cause
  • Cyclosporine
Prevention/Action
  • Keep all scheduled lab appointments so your response to the medication can be evaluated
  • Follow-up with your doctor regularly
  • Ask your doctor how often you should get an abdominal ultrasound

High Potassium Level

Cause
  • Immunosuppressant medications
Prevention/Action
  • Keep all scheduled lab appointments so your response to these medications can be evaluated
  • Eat low-potassium foods, as recommended

Coronary Artery Disease - due to chronic rejection or developing naturally over time

Cause
  • Immune system changes
  • Lipids
  • Hypertension
  • Obesity
Prevention/Action
  • Take immunosuppressant medications and vasodilator medications as prescribed
  • Follow a heart-healthy diet
  • Monitor your cholesterol levels with annual blood tests (or more frequently, as recommended)
  • Ask your doctor how often you need a cardiac catheterization
  • Follow-up with your doctor regularly

Biopsy Complications (scar tissue in the neck and heart)

  • Frequent biopsies
Prevention/Action
  • Follow-up with your doctor regularly for early detection and treatment of this complication

High Blood Pressure»

Hypertension after transplant can be caused by many factors, such as your medications, changes in the function of your kidneys, or too much sodium (salt) in your diet.

At home, you will be asked to check and record your daily blood pressure, heart rate and weight.

We strongly encourage you to purchase an automatic blood pressure monitor which can provide an accurate assessment of your heart rate and guidelines:

Follow your doctor's guidelines about alcohol use. In general, you should limit your daily alcohol consumption to no more than two drinks per day for men and one drink per day for women and lower-weight individuals. One drink equals:

  • 1.5 ounces of 80 proof liquor (example: whiskey, vodka, or gin) OR
  • 5 ounces of wine OR
  • 12 ounces of beer or wine cooler

Take your blood pressure medications as prescribed.

Bring your blood pressure records to each visit and report high blood pressure readings in-between visits.

Malignancies»

Transplant patients have an increased risk of developing malignant tumors and cancers. Because transplant patients need to take immunosuppressant medications, malignant cells may escape detection and destruction by the immune system and develop into a tumor.

Tumors that are common in the general population, such as breast cancer, lung cancer, and colon cancer, do not seem to occur more frequently in transplant patients. Skin cancers are the most common tumor in transplant patients. Sun exposure is the major risk factor for skin cancer.

Lymphomas occur with increased frequency in transplant patients.

Signs and symptoms may include:

  • Enlarged lymph nodes or swelling beneath the skin
  • Fever, excessive fatigue, weight loss, poor appetite and sweating
  • Nodules, which can be detected on routine chest x-rays

If you have any of these signs or symptoms, please contact your doctor for prompt evaluation. Lymphomas are diagnosed by biopsy of a lymph node or nodule. Other tests may be performed to determine if other organs are involved.

Check your neck, armpits, and groin area for lumps or new growths. Report signs of these to your doctor.

Treatment consists of a change in the immunosuppressant medication dosage and/or schedule, and sometimes chemotherapy or radiation therapy.

Rejection»

Body's Immune System

The immune system is the body's defense against foreign invaders. Made up of mostly white blood cells, its job is to destroy germs such as bacteria and viruses, and help to fight other diseases.

Your white blood cells are made up of different teams of fighter cells, called B and T cells. B cells fight germs by producing antibodies. Antibodies are strong weapons against infections, causing germs to become harmless.

T cells kill foreign invaders, such as germs and cancer cells. Each time your body has an immune reaction, it memorizes the foreign body (antigen) and how it was stopped so that it can respond quickly the next time that same antigen is introduced.

The immune system is very helpful and powerful, but it cannot tell the difference between "bad invaders," such as germs, and "good invaders," such as a transplanted heart. As a normal response, your body's immune system sees the new heart as a foreign invader and attempts to destroy it. Immunosuppressant medications are given to stop this process.

If the immune system is able to attack the transplanted heart, it is called rejection. Rejection must be detected and treated quickly to prevent damage to the transplanted heart.

Rejection may seem frightening to some transplant patients, but deaths from rejection are uncommon. Most cases of rejection are detected by biopsy and tissue staining and occur without any symptoms.

Types of Rejection

Rejection can be hyperacute, acute or chronic.

Hyperacute Rejection

Hyperacute reactions occur if you have been exposed to the same or similar antigens found in the donor heart. Previous exposure to these antigens may have occurred through blood transfusion, pregnancy or prior transplants. Hyperacute rejection occurs rarely, because transplant recipients undergo testing to determine if they have pre-formed antibodies which increase the risk for this problem. However, when it does occur, the body's immune system reacts swiftly and strongly, sometimes causing failure to the new organ within the first few hours after transplant.

The PRA (panel of reactive antibodies) test is performed by taking a sample of the recipient's blood and mixing it with samples of blood from multiple donors in the community. Blood from many volunteers is obtained because together they represent most of the human antigens to which a potential recipient may have been exposed.

A cross-match test is done when a local potential donor is found. The organ procurement agency will send a sample of the donor's blood to be combined with a stored sample of the recipient's blood. If the recipient's blood cells destroy donor cells, it means that pre-formed antibodies have reacted with donor antigens. The cross-match is termed "positive" and indicates that a heart transplant with this donor may be risky. Usually the procedure is canceled because of the high likelihood of hyperacute rejection.

Recipients with pre-formed antibodies (high PRA) may have a longer waiting time because of the need to match with an appropriate donor. It is important to note the PRA can change with time or exposure to blood, and occasional retesting may be necessary.

Acute Rejection

There are two forms of acute rejection: cellular and vascular.

Acute cellular rejection: This type of rejection occurs after the recipient's white blood cells realize that the transplanted organ is foreign and mount a defense against it. Immunosuppressants block the immune response. Without these medications, transplanted organs would probably fail within two to four weeks as a result of acute cellular rejection.

The chances of acute cellular rejection are greatest during the first six months after transplant. Most people have one or more episodes of acute rejection during that time. The chance of acute cellular rejection decreases with time and remains very low after the first year because of immunosuppressive medications and tolerance to the transplanted organ.

Source: International Society of Heart and Lung Transplantation:
"Classification of Acute Rejection"

Note: Acute vascular rejection has a different grading system.

Acute vascular rejection: Acute vascular rejection is a type of acute rejection that occurs early after transplant (within the first four months) in a small number of patients. Vascular rejection causes damage to the innermost layer of the coronary arteries. This leads to scarring and a decrease in blood flow, potentially leading to other heart complications. It is also believed that patients with vascular rejection are more prone to developing post-transplant coronary artery disease.

Vascular rejection has been dramatically reduced with the change to triple therapy drug treatment. Findings of vascular rejection are now rare.

Symptoms of Rejection

It is important to know the signs and symptoms of rejection. In most cases, rejection does not cause any signs or symptoms. In more advanced stages, you may feel:

  • Shortness of breath
  • Irregular pulse
  • Swelling of the feet, legs and hands
  • Fatigue (feeling overtired)
  • Unexplained weight gain over one to three days
  • Low blood pressure
  • Low grade fever

Most patients do not have symptoms. If symptoms occur, please call your transplant coordinator or cardiologist right away.

Nutrition Guidelines»

The foods you eat can help you heal and resist infection after organ transplantation. Other foods may need to be avoided. Here are some general guidelines for nutrition following organ transplantation:

  • Eat a healthy, well-balanced diet. Eat foods from all the food groups.
  • Drink plenty of fluids (unless you are told to restrict your fluids). Water is the best.
  • Wash fresh fruits and vegetables thoroughly before eating.
  • Do not eat raw seafood (fish or shellfish).
  • Make sure eggs, chicken or pork are fully cooked and well-done.
  • Following a Proper Diet After Your Organ Transplantation.

Keeping a healthy diet is one of your most important jobs after your organ transplantation. Your diet plays an important role in helping you heal, avoiding weight gain, and maintaining your health into the future.

The four key areas you need to focus on for your diet following organ transplantation include:

  • Follow a low-sodium diet.
  • Eat foods low in fat and cholesterol.
  • Control your weight by balancing your meals with exercise.
  • Include a variety of healthy foods in your diet.

1. Follow a low-sodium (salt) diet.

Sodium causes your body to hold in (retain) fluids. A diet high in sodium can lead to high blood pressure. Prednisone, a medication often prescribed after heart transplant, causes you to retain sodium and fluids. So if you are taking this drug, controlling sodium in your diet is even more important. Your doctor will tell you how much sodium you should have in one day - usually 2000 mg is the upper limit. Sodium is found in table salt and many of the foods we eat, most commonly, preserved foods, canned foods, luncheon meats, cheeses and snacks.

Here are some tips to limit sodium in your diet following your organ transplantation:

  • Avoid the salt shaker and seasoning salts. Use herbs and spices instead.
  • Read food labels. Find out how much sodium is in the foods you eat. Choose foods with labels that state "low salt" or "low-sodium."
  • Eat less canned and processed foods (canned and frozen foods, cheeses, and luncheon meats). Natural is better.
  • Stay away from "fast" foods.
  • When dining out, ask if MSG (a food additive) is in the food before you order. If it is, select another menu item or ask that the meal be prepared without MSG.
  • Read stomach, cold, and headache medication labels for sodium content.
  • Choose no-salt snacks and crackers.
  • Avoid smoked, cured, salted, processed or canned meat, poultry or fish.
  • Check with your doctor before using a salt substitute.
  • Remember, to improve the effectiveness of your diuretic ("water pill") take it along with following a low-sodium diet.

2. Eat foods low in fat and cholesterol.

A high-fat diet will lead to high blood cholesterol, which is a major risk factor for coronary artery disease. This disease can reduce blood flow to the heart and damage your new heart. Because cyclosporine tends to raise blood cholesterol levels and prednisone tends to cause weight gain, you may have an increased risk of developing coronary artery disease after heart transplant. The best way to decrease this risk is to decrease the amount of fat in your diet.

Here are some tips for a low-fat and low-cholesterol diet:

  • Limit red meat to two times per week and try to have one "vegetarian day" each week.
  • Eat no more than 6 ounces of meat, fish or poultry (chicken and turkey) per day (3 ounces is about the size of a deck of cards).
  • Remove visible fat or skin before cooking.
  • Steam, boil, broil, grill, microwave or bake instead of frying.
  • Choose non-fat (skim) milk dairy products.
  • Cut back on added butter and margarine, salad dressing, gravy and sauces.
  • When dining out, ask how food is prepared and make healthy choices.
  • Choose healthy low-fat snacks.

3. Control your weight by balancing your meals with exercise.

Weight gain is very common after transplant, as one side effect of your medications is an increased appetite. If you are overweight, your heart must work harder to pump blood and it can lead to increased cholesterol, triglycerides, blood sugar, and blood pressure.

So, it is important to achieve and maintain an optimal weight. Here are some guidelines:

  • Eat low-fat foods.
  • Watch out for fat-free foods that often replace fat with high-calorie sugars.
  • Control your portion sizes. Read labels to find out fat content, calories and portion sizes.
  • Eat smaller, more frequent meals so you can feel full without increasing calories.
  • Limit your intake of sweets and sugars, such as table sugar, brown sugar, corn syrup, honey, regular sodas, rich desserts, and candy. Instead, use fresh fruit as dessert on a daily basis and save heavy desserts for special occasions.
  • Exercise five to six times per week.
  • Choose healthy low-calorie snacks.
  • Set realistic goals—weight loss should be gradual, no more than one to two pounds per week.

4. Include a variety of healthy foods in your diet.

A healthy, balanced diet will help you maintain your weight, control your blood pressure, cholesterol and blood sugar and help you feel better.

Include a variety of foods in your diet. Try to eat foods from each food group.

Eat foods high in fiber. Fresh fruits and vegetables, legumes (beans), and grains contain many vitamins, lower blood cholesterol and may also protect against cancer and heart disease.

To protect against high blood pressure, eat foods rich in potassium, calcium, and magnesium. Certain diuretics contribute to loss of potassium and magnesium, so if you are taking these drugs, this is even more important to include: fresh fruits (especially bananas and strawberries), dried fruits, skim milk, and fresh vegetables. Some medical conditions (such as kidney disease) and medications (potassium-sparing diuretics), may require you to LIMIT the amount of potassium in your diet.

Talk with your doctor about including potassium-rich foods in your diet.

    Infection-When to Call the Doctor»

    It is up to you to recognize the symptoms of infection and get treatment as soon as any of these symptoms occur.

    Note: Prednisone can mask the usual signs of infection so make sure you get treatment promptly. Don't wait!

    Call your healthcare provider right away if you notice any of these symptoms:

    • Fever over 101 degrees F (38.4 degrees C)
    • Record your temperature once a day to help you quickly detect a fever
    • Sweats or chills
    • Feeling "lousy" or flu-like symptoms (chills, aches, headaches or feeling a decrease in your energy level without any obvious cause)
    • Skin rash
    • Pain, tenderness, redness or swelling
    • Wound or cut that will not heal
    • Red, warm or draining sore
    • Sore throat, scratchy throat or pain when swallowing
    • Sinus drainage, nasal congestion, headaches or tenderness along upper cheekbones
    • Persistent dry or moist cough that lasts more than two days
    • White patches in your mouth or on your tongue
    • Nausea, vomiting or diarrhea
    • Trouble urinating: pain or burning, constant urge or frequent urination
    • Bloody, cloudy or foul-smelling urine

    Life Post-Transplant»

    After you leave the transplant center, our goal is to help you adjust and live a healthy life. At the transplant center, we will help you address the following issues:

      Living a Healthy Lifestyle

    • Nutrition Guidelines
    • Activity and Exercise Guidelines
    • Cardiac Rehab
    • Substances to Avoid

    Follow-Up Appointments

    • When to Call the Doctor in Between Appointments

    Preventive Care Recommendations

    • Dental Care
    • Skin Care
    • Immunizations

    Living a Full Life Again

    • Return to Work
    • Finances
    • Family Adjustment
    • Dealing with Emotions
    • Sexual Activity

    Follow-Up Appointments

    Lifelong follow-up appointments with your doctor are very important after heart transplant. Some of your heart transplant medications can affect your body in different ways. Your doctor will monitor your body's responses after heart transplant and will adjust your medications as needed.

    Visits with your cardiologist after your heart transplant

    When you first leave the hospital after heart transplant, you will need to visit your cardiologist often (about once a week). You will need to stay in the Cleveland area with a family member or friend for the first month after your heart transplant. Later, your visits will be less frequent.

    If you need to arrange housing after your heart transplant, discuss this with your social worker or housing specialist.

    It is important to bring all your medications and your daily log to the doctor at each visit following your heart transplant. The following information should be recorded in your log:

    • Names of medications, dose, and time you take them
    • Daily weight
    • Daily temperature
    • Daily heart rate (pulse)
    • Daily blood pressure
    • Comments, events, or questions you want to ask

    This information helps your doctor adjust your medications and care to make your heart transplant recovery as effective as possible.

    Your appointments with your cardiologist may include:

    To detect the development of coronary artery disease (chronic rejection), your doctor will check your heart's arteries and overall function several weeks after your transplant. Two tests will be performed: a cardiac catheterization and intravascular ultrasound.

    These tests will be repeated once a year.

    Keeping in contact with your transplant coordinator

    You may need additional appointments with other specialists or doctors on the day of your appointment with your cardiologist. The post-transplant coordinator will schedule these visits. If you would like to make an appointment that has not been scheduled, please discuss this with your transplant doctor or transplant coordinator.

    Notify your transplant coordinator if you have been prescribed any new medications by any other doctors.

    Follow-up with other doctors

    Prevention and early detection is best. Some of the problems we may be looking for after transplant include hypertension, coronary artery disease, anemia, low white blood cell counts, skin cancers or other types of malignancy. It is important to see the following doctors for regular exams or as they are needed:

    Ophthalmologist

    You should see an ophthalmologist for annual eye exams including glaucoma and cataract evaluations. Eye doctor appointments are important, since prednisone can cause vision changes.

    Gynecologist

    Female patients should visit a gynecologist yearly for a pelvic examination and PAP smear, regardless of age. Mammograms should be performed regularly, as recommended by your doctor.

    Internal Medicine or Family Medicine Doctor

    Male patients over age 50 years should have an annual PSA (prostate specific antigen) blood test.

    Dentist

    Regular follow-up appointments with your dentist are important. Your gums may become swollen and bleed easily. Tell your dentist about your transplant so antibiotics can be prescribed for any dental procedure.

    Dermatologist

    Wear sunscreen, protective clothing and a hat when outdoors because of an increased risk of skin cancer. If you notice any unusual skin growths, darkened spots or bumps, see a dermatologist as soon as possible. You may also want to consult a dermatologist if acne is a problem for you after transplant.

    Preventive Cardiology Specialist

    It is very important to control your risk factors for heart disease. If you have risk factors, such as high blood cholesterol, diabetes, hypertension, being overweight, smoking or high stress or anger, a preventive cardiology specialist can help you reach optimal control.

    When to Call the Doctor in Between Appointments

    Sometimes you need to see your doctor before your next heart transplant follow-up. In between follow-up visits, call your heart transplant doctor or heart transplant nurse if you have:

    • Nausea, vomiting, or diarrhea
    • Blood in the urine or stool
    • Sustained high blood pressure
    • Lightheadedness or dizziness
    • Frequent headaches
    • Swelling in the ankles or feet
    • Sudden weight gain
    • Signs of infection
    • Signs of rejection

    Cleveland Clinic’s pediatric transplant program began in 1965, with the first pediatric heart transplant performed on March 30, 1985.

    In addition to clinical specialists, the entire pediatric team ensures the very best results for the child and adolescent patients, including the referring physician, the patient's family, specially trained cardiac nurses, allied health professionals, social workers and child life specialists.

    Pediatric Transplant Team:

    For more information on Cleveland Clinic’s pediatric transplant program, please call 216.444.6123.

    Or visit Cleveland Clinic Children's Cardiology & CT Surgery Department.

    Advance Directives»

    You have the right to state your wishes regarding your medical treatment and heart transplant. A growing number of people are taking action before they become seriously ill. You may now state your healthcare preferences in writing, while you are still healthy and able to make such decisions prior to your heart transplant.

    Cleveland Clinic is required by law to provide you, the patient, an explanation of your rights to make personal decisions regarding your own medical care. We also are required to ask you whether you have written down your wishes prior to your heart transplant.

    You should know your options concerning the right to accept or refuse medical treatment and how you may make your wishes known about the care you want when you are unable to decide for yourself. You should know and understand your rights prior to your heart transplant.

    Resources»

    These heart transplant and heart transplant surgery resources are provided for your information only. Inclusion does not imply endorsement by Cleveland Clinic. The heart transplant surgery information provided by these resources should not replace the advice of your healthcare providers.

    American Heart Association
    Phone: 800.AHA.USA.1

    American Organ Transplant Association
    Phone: 713.344.240

    American Society of Transplantation
    Phone: 856.439.9986
    Email: ast@ahint.com

    Children's Organ Transplant Association
    Phone: 800.366.2682

    Division of Transplantation, U.S. Department of Health and Human Services
    Phone: 301.443.7577

    International Society for Heart and Lung Transplantation
    Phone: 972.490.9495
    Email: ishlt@ishlt.org

    Lifebanc
    The federally designated, nonprofit organ procurement organization (OPO) for Northeast Ohio.
    Phone: 888.558.LIFE (5433)
    Email: info@lifebanc.org

    National Foundation for Transplants
    Phone: 800.489.3863
    Email: info@transplants.org

    National Transplant Assistance Fund
    Financial assistance and information on establishing fundraising campaigns to pay for transplant.
    Phone: 800.642.8399

    The Organ Procurement and Transplantation Network
    Phone: 888.TX.INFO.1

    TransWeb
    Nonprofit educational web site serving the world transplant community. Sponsored by Novartis.
    Phone: 734.998.7314
    Email: transweb@umich.edu

    TRIO - Transplant Recipient International Organization
    For all types of transplants.
    Phone: 800.TRIO.386
    Email: info@trioweb.org

    UNOS - United Network for Organ Sharing

    Transplant Living
    Patient Education website sponsored by UNOS
    Phone: 888.894.6361

    Organizations Promoting Organ/Tissue Donation

    American Association of Tissue Banks
    Phone: 703.827.9582
    Email: aatb@aatb.org

    Donate Life - Coalition On Donation
    Phone: 804.782.4920
    Email: coalition@donatelife.net

    Donate Life
    Official U.S. government website for organ and tissue donation and transplantation

    Gift of Life Foundation
    Phone: 813.855.7600
    Email: givelife@verizon.net

    The Gift of a Lifetime
    Stories about people whose lives are transformed by organ and tissue donation

    Ohio Donor Registry
    Phone: 888.745.1511
    Email: SCTF@odh.ohio.gov

    Transplant Awareness Inc.
    Sells merchandise to promote organ and tissue donation

    Heart Transplantation Glossary»

    Heart transplantation can be a daunting thing to face, so it helps to be familiar with the terminology. Compiled below is a glossary of terms you may find helpful to know as you go through the heart transplantation process.

    Advance Directive: A document in which a person either states choices for medical treatment or designates someone who should make treatment choices if the person should become unable to make decisions. Most often the term refers to formal, written documents, but it can also be used to include spoken statements by the patient.

    Allograft (allogeneic graft or homograft): An organ or tissue transplanted from one individual to another of the same species, i.e. human to human.

    Antibody: A protein substance made by the body's immune system in response to a foreign substance, for example a previous transplant, blood transfusion or pregnancy. Because the antibodies attack the transplanted organ, heart transplantation patients must take powerful immunosuppressive drugs.

    Antigen: A foreign molecule or substance, such as a transplant, that triggers an immune response. This response may be the production of antibodies.

    Anti-hypertensive drug: A drug that reduces hypertension (high blood pressure).

    Atherosclerosis: A disease in which fatty deposits accumulate on the inner walls of the arteries, causing narrowing or blockage that may result in a heart attack. Commonly known as "hardening of the arteries."

    Attending or Primary Physician: The doctor who has the main responsibility for your care while you are in the hospital during heart transplantation. There may be other doctors caring for you such as consulting doctors, resident doctors, and medical students.

    Bioethicist: Professionals who are skilled in helping people make decisions about what is morally right and wrong.

    Biopsy: The removal of a sample of tissue via a small needle. The tissue is removed for examination to determine a diagnosis.

    Blood Typing: A test that can help establish compatibility between two different types of blood. Blood types include A, B, AB or O.

    Blood Urea Nitrogen (BUN): A waste product regularly removed by the kidneys and eliminated in the urine. Regular testing of the BUN level serves as an indicator of how well the kidney is functioning.

    Brain Death: Brain damage that is so severe and extensive that the brain cannot recover. Breathing has stopped, but the circulation may still be continuing because of artificial ventilation. Donor organs can only be taken from people who are declared brain dead.

    Breathing Tube (endotracheal tube): A temporary tube put into the nose or mouth. Anesthesia or air and oxygen pass through the tube allowing artificial breathing.

    Cadaveric Donor: An individual who has recently passed away of causes not affecting the organ intended for transplantation. Cadaver organs usually come from people who have willed their organs before death by signing organ donor cards. Permission for donation also can be given by the deceased person's family at the time of death.

    Catheter: A thin, flexible instrument used to introduce or withdraw fluids from the body. A catheter also may be used to monitor blood pressure.

    Chest X-ray: Used to view the lungs and lower respiratory tract. A chest X-ray may be used for diagnosis and therapy.

    Cholesterol: A fatty substance that is acquired in part from certain foods. A high cholesterol level may lead to atherosclerosis.

    CPR (cardiopulmonary resuscitation): A procedure using cardiac and respiratory equipment and medications possibly to restore the heartbeat and/or breathing.

    Compliance: The act of following orders and adhering to rules and policies, i.e. taking one's medications after transplant.

    Complication: The occurrence of diseases or medical problems simultaneously in the body.

    Coronary Angiography (Cardiac Catheterization): A procedure that allows picture to be taken of the arteries supplying the heart with blood (the coronary arteries). Angiography shows blockages in the arteries.

    Creatinine: A waste product in the blood, creatinine is removed by the kidneys and eliminated in the urine. Regular testing of the creatinine level serves as an indicator of how well the kidney is functioning.

    Crossmatch: A test that establishes the compatibility or closeness of blood between the organ donor and recipient. A positive crossmatch shows that the donor and patient are incompatible. A negative crossmatch means there is no reaction between donor and patient and that the transplant may proceed.

    Cyclosporine Level Test: A blood test that measures the amount of cyclosporine in the blood. Based on the amount of cyclosporine measured, a physician decides what dose of cyclosporine is appropriate for a patient.

    Cytomegalovirus (CMV): A common virus that may be present without symptoms in healthy people, but can be a serious condition if present in transplant patients.

    Decisional Incapacity: A condition in which a patient is unable to understand his or her choices or declare personal wishes about his or her care.

    Dialysis: An artificial means of cleansing the blood of waste products and removing fluids from the body when the patient's own kidneys are unable to continue this process.

    Diastolic: The lower number in a blood pressure reading that indicates the pressure in the heart when the muscle is relaxed (the point of least pressure).

    Diuretic: A drug that helps the body get rid of excess water by increasing the amount of urine the body excretes.

    DNR Order (Do Not Resuscitate Order): An advanced directive that means no CPR is to be done when the heart and lungs stop.

    Donor: A person who gives an organ, tissue or blood to another person. A compatible donor is a person who has the same tissue and blood types as the person who receives the organ, tissue or blood.

    Durable Power of Attorney for Health Care: A written advance directive in which individuals name someone else (the "agent" or "proxy") to make health care decisions for them when they are unable to speak for themselves.

    Echocardiogram: An imaging procedure that creates a moving picture outline of the heart's valves and chambers using high-frequency sound waves that come from a hand held wand placed on your chest or passed down your throat. Echo is often combined with Doppler ultrasound and color Doppler to evaluate blood flow across the heart's valves. Doppler senses the speed of sound and can pick up abnormal leakage or blockage of valves.

    Electrocardiogram (EKG or ECG): A test that records on graph paper the electrical activity of the heart via small electrode patches attached to the skin. An EKG helps a physician determine the causes of abnormal heartbeat or detect heart damage.

    Gingival Hypertrophy: Enlargement of the gums. A common side effect of the medication cyclosporine (Sandimmune), this condition is easily managed with good oral hygiene.

    Glucose: Blood sugar. Manufactured by the body from carbohydrates, protein, and fat, glucose is the main source of energy for all living organisms.

    Graft: A transplanted tissue or organ (such as the lung or liver).

    Herpes: An infection for which transplant patients are at risk. It appears as small sores on the skin, lips or genitals. When there are no sores, the herpes virus lies dormant (not causing infection) in the body.

    Hirsutism: An excessive increase of hair growth, sometimes leading to male-pattern hair growth in a female. A common side effect of corticosteroids, it can also occur with cyclosporine (Sandimmune) therapy. Hirsutism can be easily treated with depilatory creams or other hair removal methods.

    Hypertension: High blood pressure.

    HLA System (Human Leukocyte Antigens): There are three major genetically controlled groups: HLA-A, HLA-B and HLA-DR. In transplantation, the HLA tissue types of the donor and recipient are sometimes an important part of the selection process. This depends on the recipient's antibodies.

    Histocompatibility Antigens: Molecules found on all nucleated cells in the body that characterize each individual as unique. These antigens are inherited from one's parents. Human leukocyte antigens determine the compatibility of tissues for transplantation from one individual to another.

    Hospice: A program that provides care for the terminally ill in the form of pain relief, counseling, and support, either at home or in a facility.

    Hydration: Provision of fluids by any means to prevent dehydration.

    Immune Response: The body's defense against foreign objects or organisms, such as bacteria, viruses or transplanted organs or tissue.

    Immune System: The body's response mechanism for fighting against bacteria, viruses and other foreign substances. If a cell or tissue (such as bacteria or a transplanted organ) is recognized as not belonging to the body, the immune system will act against the "invader." The immune system is the body's way to fight disease.

    Immunosuppressant Drug: A drug that prevents the immune system from responding to cells that it recognizes as foreign to the body. Such drugs prevent the immune system from recognizing that a transplanted organ, such as a lung, is not the organ a person had when he or she was born.

    Immunosuppression: The artificial suppression of the immune response, usually through drugs, so that the body will not reject a transplanted organ or tissue. Drugs commonly used to suppress the immune system after transplant include prednisone, azathioprine (Imuran), mycophenolate mofetil (CellCept), and cyclosporine (Neoral).

    Infectious Disease Team: A team of physicians who help control the hospital environment to protect you against harmful sources of infection.

    Intensive Care Unit (ICU): A special nursing area devoted to providing continuous and immediate care to seriously ill patients.

    Intravenous (IV): Delivery of drugs, fluids or food directly into a vein.

    Informed Consent: A process of reaching an agreement based on full disclosure. Informed consent has components of disclosure, comprehension, competence and voluntary response. Informed consent often refers to the process by which one decides to donate the organs of a loved one.

    Legal Guardian: A person charged (usually by court appointment) with the power and duty of taking care of and managing the property and rights of another person who is unable to take care of their own affairs.

    Life-Sustaining Treatment: A medical treatment given to a patient that prolongs life and delays death.

    Living Will: A written advance directive in which an individual states which health care decisions should be made if the individual becomes unable to make these decisions.

    Medical Student: A student in the third or fourth year of medical school training. The student doctor assists the primary and resident doctors in daily care of patients.

    Noncompliance: Failure to follow instructions given by health care providers, such as not taking medication as prescribed or not attending follow-up appointments.

    NOTA: The National Organ Transplant Act, passed by Congress in 1984, outlawed the sale of human organs and initiated the development of a national system for organ sharing and a scientific registry to collect and report transplant data.

    Ohio Solid Organ Transplantation Consortium (OSOTC): An organization that establishes and enforces regulations to ensure equality in organ transplantation and fairness in distribution of donor organs.

    Ombudsman: The staff of the Ombudsman's office is available to patients and family members to help investigate and solve problems with medical service. The Ombudsman acts as a "go-between" for the patient and Cleveland Clinic. The ombudsmen report directly to key administrators and have the authority to investigate patient complaints. To contact an ombudsman, call 216.444.2544.

    Organ Preservation: Between procurement from a donor and heart transplantation, organs require special methods of preservation. The length of time that organs and tissues can be kept outside the body vary, depending on the organ, the preservation fluid and the temperature.

    Palliative Care: Medical treatments intended to control suffering and discomfort (such as pain medication or treatment of an infection). These treatments will not cure the patient.

    Panel Reactive Antibody (PRA): The percentage of cells from a panel of donors with which a potential recipient's blood serum reacts. The more antibodies in the recipient's blood, the higher the PRA. The higher the PRA, the less chance of getting a good crossmatch.

    Patient Service Representative: Members of this department can address or direct questions concerning hospital policies and procedures, secure patient valuables and belongings, and provide notary service.

    Permanently Unconscious State: A condition of coma in which a patient is irreversibly unaware of himself and his environment, and has a total loss of higher brain functioning, resulting in no capacity to experience pain or suffering.

    Persistent Vegetative State: Same as "permanently unconscious state."

    Pharmacologist: A medication specialist who checks your blood levels to monitor your response to immunosuppressive medications.

    Physical Therapist: An expert who can recommend exercises to help you maintain flexibility and regain your strength.

    Pre-transplant Evaluation: A series of interviews and tests for patients who are being considered for a transplant. It is the second step in the transplant evaluation process. After this evaluation, the transplant team decides if a transplant is a suitable treatment.

    Pre-transplant Screening: A series of interviews and physical examinations for patients who are being considered for a transplant. Pre-transplant screening is the first step in the transplant process to discover if a patient has any condition that would immediately rule him or her out for a transplant.

    Proxy: A person appointed to make decisions for someone else, as in a Durable Power of Attorney for Health Care (also called a surrogate or agent).

    Pulmonary Function Test: A test used to reveal lung capacity and function, and to determine the blood's capacity to transport oxygen.

    Pulmonologist: A staff physician with extensive training in lung disease.

    Pulmonary Function Tests (PFTs): Tests that measure the volume of air that is inhaled and exhaled. The PFTs also measure gases, such as oxygen and carbon dioxide, in the lungs.

    Recipient: A patient who receives an organ, tissue or blood from another person.

    Rejection: The process by which the body tries to get rid of a transplanted organ or tissue by producing antibodies. Immunosuppressive drugs help to prevent rejection.

    Required Request: Hospitals must tell the families of suitable donors that their loved one's organs and tissues can be used for transplant. This law is expected to increase the number of donated organs and tissues used for transplantation.

    Resident Physician: A doctor who works closely with the primary physician to manage a patient's daily care. The resident is a licensed medical school graduate doing further training in one of the specialties of medicine.

    Retransplantation: Due to organ rejection or transplant failure, some patients return to the waiting list. Reducing the number of retransplants is a critical concern when examining ways to maximize a limited supply of organs.

    Sensitization: Potential recipients are "sensitized" if there are antibodies in their blood, usually because of pregnancy, blood transfusions or previous rejection of an organ transplant. Sensitization is measured by PRA. Highly sensitized patients are more likely to reject an organ transplant than unsensitized patients.

    Side Effect: An unintended effect of a drug on tissues or organs other than the drug benefits.

    Status: Indicated degree of medical urgency for patients awaiting transplants.

    Survival Rates: Survival rates indicate the percentage of patients or grafts (transplanted organs) that are still alive and functioning at a certain point post-transplant. Survival rates are often given at one-, three-, and five-year increments. Policy modifications are never made without examining their impact on transplant survival rates. Survival rates improve with technological and scientific advancements. Developing policies that reflect and respond to these advances in transplantation will also improve survival rates.

    Systolic: The top number in a blood pressure reading that indicates the force of the heart muscle's contractions as blood is pumped through the heart's chambers.

    Terminal Condition: An irreversible, incurable, and untreatable condition from which there can be no recovery, and death is likely to occur soon. Nursing and medical efforts are administered to provide comfort.

    Thrush: A yeast infection for which transplant patients are at risk. It can occur in the mouth or vagina.

    Tissue Typing: A test that evaluates the compatibility or closeness of tissue between the organ donor and recipient.

    TPN (total parenteral nutrition): A special intravenous (IV) solution providing hydration, vitamins, minerals and calories to sustain life. This IV is usually inserted into a large vein in the neck area.

    Transplant Coordinator: A registered nurse who coordinates all of the events leading up to and following your transplant. The transplant coordinator helps arrange your pre-transplant tests and helps find a suitable donor.

    Transplant Surgeon: The staff physician who performs the transplant surgery. The transplant surgeon follows your progress while you are in the hospital and monitors your post-transplant care after you are discharged.

    Tube Feeding (enteral feeding): A temporary artificial method of providing food through a tube inserted into the stomach. This food is in a liquid form and contains calories, vitamins and electrolytes. Enteral feeding may be necessary when food cannot be taken by mouth.

    UNOS: United Network for Organ Sharing - the national nonprofit agency that establishes and enforces regulations to ensure equality in organ transplantation and fairness in distribution of donor organs.

    U.S. Scientific Registry of Transplant Recipients: A database of post-transplant information. Follow-up data on every transplant are used to track transplant center performance, transplant success rates and medical issues impacting transplant recipients. UNOS facilitates the collection, tracking and reporting of transplant recipient and donor data.

    Ventilator: A machine used to assist or control breathing (may be called a respirator).

    Waiting List: After evaluation by the transplant physician, and after committee presentation, a patient is added to the national waiting list by the transplant center. Lists are specific to both geographic area and organ type: heart, lung, kidney, pancreas, intestine, heart-lung, kidney-pancreas.

    Each time a donor organ becomes available, the computer generates a list of potential recipients based on factors that include blood type, organ size, medical urgency and time on the waiting list.

    A "new" United Network for Organ Sharing (UNOS) waiting list is generated each time an organ becomes available. There are many factors that go into the actual decision of donor selection and recipient matching. Although your place on the list and the amount of time you have been waiting for transplant are important factors, the transplant surgeon ultimately is the one to make the final decision.

    Schedule an Appointment Online

    Call us for an Appointment

    To find a transplant specialist for your needs, contact the Transplant Center at 216.444.2394 (or toll-free 800.223.2273, ext. 42394)

    This information is provided by Cleveland Clinic and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition.

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