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.
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
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:
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.
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.
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.
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 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.
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.
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.
An Electrocardiogram records the electrical activity of the heart. It documents abnormal heart rhythms, previous heart attacks, and thickening of the heart muscle.
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.
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.
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.
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.
In certain patients, additional testing may be needed during the evaluation process: eye exam, CT scan, barium enema, upper GI series, or other consultations.
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.
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).
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
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.
- 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.
- 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 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".