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Miami Transplant Institute

Pediatric Heart Transplant Becoming a Patient

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Our team of experts is skilled in the most advanced treatment options available, including medical therapy and surgical procedures, lifestyle modifications, and cardiac rehabilitation exercise programs. 

There are three teams that provide the spectrum of care that patients receive at the MTI: pre-transplant, in-patient, and post- transplant. The team members include the transplant surgeons, transplant cardiologists or pediatric cardiologists, social worker, secretaries, patient financial services, dietician, psychiatrist, psychologists, pharmacist and coordinators.

The MTI nurses play an important role in the transplant process. There are separate coordinators for pre-transplant, in-patient, and post- transplant. The pre transplant coordinator will assist you with completing your work up, being seen in clinic and getting on the transplant waitlist. While in-patient, a nurse coordinator will facilitate care, daily rounds with the physicians and discharge planning. The post-transplant coordinator will follow you in the out-patient clinic, review your labs with you and adjust your medications after discussing with the physician.

What is Cardiac Transplantation and when is it an Appropriate Treatment?

Organ transplants offer individuals facing serious disability and death the opportunity to lead more fully-functioning lives. Many transplants are performed in the United States each year. The kidney was the first organ to be successfully transplanted in humans. Today, transplantation is performed with kidneys, liver, the pancreas, lungs, the heart, intestines, bone marrow and bones, corneas, skin, saphenous veins, and valves of the heart.

Cardiac transplantation is the surgical placement of a healthy heart from a human donor into the body of a person whose own heart is badly diseased.

A heart transplant is performed when heart failure or heart injury cannot be treated by any other medical or surgical means. It's reserved for those individuals with a high risk of dying from heart disease within one or two years. End-stage heart failure is a disease in which the heart muscle is failing severely in its attempt to pump blood through the body, and in which all other available treatments are no longer helping to improve the heart's function. End-stage heart failure is the final stage of heart failure. Heart failure, also called congestive heart failure, or CHF, is a condition that occurs when the heart is unable to pump blood sufficiently. Despite its name, a diagnosis of heart failure does NOT mean the heart is about to stop beating.

Most patients who undergo a transplant have one of two problems. One is irreversible damage to the heart caused by coronary artery disease, also called "hardening of the arteries," and multiple heart attacks. The other problem is cardiomyopathy, or heart muscle disease. In this condition, the heart cannot contract normally because of damage to the muscle cells. It may have been caused by bacterial or viral infection or hereditary factors. Occasionally, heart transplants are performed on people with other forms of heart disease. These might include the effects of rheumatic fever or hypertension (high blood pressure), abnormalities in the heart valves that cause damage to the heart muscle, or congenital heart defects, those structural abnormalities present at birth.

Heart failure may appear suddenly after an acute episode (such as a heart attack) that severely damages and weakens the heart muscle, or it may progress over a much longer period of time. In cases of severe CHF, heart transplantation may be an option. Many factors are considered when assessing a patient for heart transplant, so it may not always be an option for any given patient.  Evaluation for heart transplant is a very thorough, detailed process to ensure it is the best option for you.  

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How do I know if I am a candidate for a heart transplant?

Criteria for heart transplant evaluation:

  • Cardiomyopathy
  • Ischemic heart disease
  • Hypertrophic heart disease
  • Severe decompensated inoperable valvular heart disease
  • Congenital heart disease
  • Any other cardiac abnormalities that severely limit normal function and/or have a mortality risk of greater than 50 percent at two years
  • Ventricular Assist Device dependent patients who meet criteria for transplantation
  • Candidates will be considered for transplant up until their 70th birthday. Any candidate over the age of 70 will be reviewed on an exception basis.
  • Life-threatening heart rhythm disorders that fail treatment
  • Chest pain refractory to maximum medical and surgical therapy
  • Potential patients please view the Criteria for Heart Transplantation for more information.

At MTI, you will become partners with your health care team, which consists of a transplant surgeon, transplant cardiologist or pediatric cardiologist, transplant nurse coordinator, social worker, pre-transplant secretary, patient financial services, dietician, pharmacist, psychologist and psychiatrist. Everyone will work together to ensure a successful procedure and good long-term outcome.

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How do I become an MTI patient?

Transplant Referrals are made by health care professionals. You may also download the physician referral form to give to your primary care physician or cardiologist for completion.

Once your referral has been forwarded to our center, you will be processed for financial clearance. Once cleared you will be scheduled to meet with the transplant team.

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Can I refer myself to MTI?

In most cases, your personal cardiologist / primary care physician will make the first inquiry about a heart transplant.  All referrals must come from a health care professional. Your primary care physician, cardiologist or insurance company may submit your referral.

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What will I need to complete my referral process?

Please view the referral form and have your physician complete the form. Once completed and the necessary medical records are collected, information can be forwarded to 305-355-5202 or mail to:

Miami Transplant Institute
Heart and Lung Transplant Program
1801 NW 9th Avenue, Fifth (5th) Floor
Miami, FL 33136

OFFICE: 305-355-5135
FAX: 305-355-5202

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How long will I have to wait for an appointment after my complete referral is received

This varies depending upon your insurance plan. If your carrier is contracted with the Miami Transplant Institute, an MTI representative will contact you to go over the referral and verify benefits required for transplant.  If your insurance carrier is not contracted with MTI, your referral will need approval from the MTI Finance Team before making an appointment. Your referring physician can help this process by making a referral for transplant to your insurance plan. 

Once financial clearance for evaluation and consultation is obtained, your appointment will be scheduled.

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What is my next step to becoming a Transplant Candidate?

During your first appointment with the Transplant team most patients will meet with the cardiologist, pre-transplant coordinator and social worker. 

Decision will be made if additional preliminary testing or medical management is needed before a decision to complete an evaluation.  These tests often guide us to determine how quickly your work up needs to be done.

Subsequent visits will include meeting with the surgeon, dietician, and psychologist / psychiatrist if needed.

Please take the time to review the following informative documents that may be discussed with you at your first appointment.

Contact us for more information, or call 305-355-5135 or 305-355-5138 from 8:30 a.m. to 4 p.m. EST.

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What should I bring to my initial appointment?

You will need to bring any diagnostic testing results (ultrasounds and x-rays) done in the last six months that have not be previously sent to us including the CD’s of the cat scans, ultrasounds, echocardiogram and angiograms. Plan to bring with you a member of your care team ( family, significant other, friend, partner etc) to understand the process and needs before and after transplant. The initial appointment can take a few hours, so it is helpful to bring a sweater, snack and reading material. 

Appointment times and wait may vary.  For your comfort and to assist the team please bring:

  • Any additional medical records / testing results since your referral
  • List of your medications with the dose and how you take them daily.
  • CD copies of Echocardiogram, Heart angiogram, Cat Scan of chest
  • Additional information should include:
  • - If you are over 50, you should bring your most recent colonoscopy results, including the pathology report.
    - If you are a woman over 25, you should bring the results of your last pap smear, and mammogram reports.
  • Copies of drivers license and insurance cards
  • A sweater
  • Snacks
  • Reading material
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Evaluation

To be considered as a candidate for a heart transplant, you will first undergo an initial consult visit with our cardiology team. The evaluation will help our transplant team learn more about you and your disease, and provide you with the opportunity to learn more about our heart transplant team and transplant program.

During the evaluation, you will go through a series of tests and consultations. The transplant physicians will be looking for medical and/or emotional conditions which would affect the chances for a successful transplant. Most evaluations are completed while you are outpatient, but there may be some circumstances when you will be required to undergo some tests after being admitted.

Before a person can be put on a waiting list for a heart transplant, the determination has to be made that there is no other treatment option available for the patient's condition. In addition, it must be determined that you are physically and mentally capable and have the necessary financial resources.  It is also important that your family/support system is also capable, of enduring the transplant process.

You will meet with a transplant coordinator, transplant surgeon, transplant cardiologist, psychologist, social worker, transplant financial counselor and psychiatrist or psychologist during the transplant evaluation. These visits or appointments will help us find out if there are special concerns that you and your family may have in regard to the transplant and what type of support is needed for a successful transplant outcome.

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An Overview of the Evaluation Process

You will be asked to sign an Evaluation Informed Consent Form prior to starting the transplant evaluation.  Your physician and a nurse coordinator will review this consent form with you and answer any questions you might have at this time and as the evaluation process moves forward. 

You might find it convenient to start a notebook or journal of your questions and write them down as you think of them so you do not forget them.  Later, when you ask your team, you can also write down the answer provided.

The evaluation process is not only for the team to gather information about you, but for you and your family to learn about our program, meet the team members and learn about what it means to be a transplant recipient. The evaluation is an important time to make sure transplant is the right choice for you.

When and where will testing be done?

Some diagnostic testing can be done locally, however there are testing which may be required to be done here at the hospital complex.  These tests or consults will be arranged by the Transplant Center to be performed at Jackson Memorial Hospital / University Health System.

Depending on your medical history, there may be additional physician visits and tests required. If you are hospitalized during the initial testing process, additional testing will be done on an outpatient basis. 

However, most evaluations will include:

  • Blood testing
    (including hepatitis, kidney function, liver function, syphilis, chickenpox, and HIV)
  • Blood and tissue typing
    (a potential organ recipient must have blood and tissue-typing tests done so that a donor organ that most closely matches the recipient can be found.  )
  • Substance abuse screening (Drugs, alcohol and nicotine)
  • Echocardiogram
    (to assess the heart's valves and mechanical pumping function)
  • Right heart catheterization (to assess the pressures inside the heart, which helps your physician determine your heart's functioning capability)
  • Possible Left heart catheterization (to look at your coronary arteries)
  • Cardiopulmonary stress test (to look at your heart and lung function together, and to check your oxygen demands during exercise)
  • Pulmonary function tests (to evaluate lung function and capacity
  • Abdominal ultrasound
    (to assess for gallstones and/or other abdominal conditions or diseases)
  • Blood test for Tuberculosis Exposure
  • Carotid duplex and peripheral vascular Doppler studies (sound wave test of the arteries in your neck and legs)
  • Cat Scan of the Chest
    (look for possible lung abnormalities and other conditions / abnormal anatomy)
  • Dental exam, including a panorex, a special type of x-ray of the teeth and jaws to assess teeth for cavities and abscesses that might cause infection after transplant; your dentist will be required to clear you for a transplant)
  • Colonoscopy for patients over age of 50 or risk factors.
  • Mammogram / PAP smear for female patients over 35 years of age.
  • Complete physical exam
  • Immunization review
    (Hepatitis A, Hepatitis B, Pneumonia, Flu, Tetanus and Varicella)
  • Optional Testing / Consults  as directed by your past medical history
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Nutritional Evaluation

A Transplant Dietician will meet with you to review your current nutritional health before your transplant.  Recommendations will be made to the team for issues that may be of concern related to your health or issues that may affect your outcome.  They will also offer guidance for diet restrictions, modifications and weight control.

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Financial Evaluation

There are variable costs associated with transplantation.  Our Transplant Finance department will review your health insurance to verify transplant benefits.  A Financial representative may contact you by telephone prior to your visit to ask questions about your coverage as well as provide information on what out-of-pocket financial coverage you may be responsible for.

The Miami Transplant Institute works with a variety of insurance companies and third-party payers.   The Financial Counselor and Social worker will help you understand the financial considerations associated with a transplant

Information regarding housing needs, transportation, and post transplant financial planning should be discussed during your initial consultation with the transplant social worker.

During your evaluation, the patient must also understand that they will be responsible for providing resources for living expenses, including transportation to and from the transplant clinic during the pre-transplant period and the post-transplant follow-up period. 

If you reside greater than fifty (50) miles from that transplant center you will need to plan to reside in the area for several weeks after your transplant.  Patients who reside outside the United States mainland should be prepared to reside locally until one year post transplant

The team will assist you to identify resource programs and agencies which will aid your adjustments to the transplant experience. Charitable organizations offer transplant information and provide limited financial assistance. Advocacy organizations advise transplant patients on financial matters. Generally, all charitable and advocacy organizations work hard to be responsive to patient needs. Patients and families often use the use of public fund raising to cover expenses not paid by medical insurance.

The following are some transplant financial resources: 

COTA
Angel Flight
HelpHOPELive-NTAF
National Organ Transplant Foundation
The Transplant Foundation,Inc.

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Social Work Evaluation

Thoughtful consideration of psychological issues is important to successful transplant surgery.   Emotional stability and a supportive social network are key to being a successful transplant recipient. To increase our understanding of these elements in your life, the transplant social worker will assess you and your family to determine the stresses facing you, social support, financial concerns, transportation, housing and ability to deal with your condition. 

You may be referred further to be evaluated by a psychologist or psychiatrist to further asses your mental and emotional well-being and establish how you would deal with the stress of transplantation.  You will learn about the many resources available to you, both within and outside of Miami Teaching Institute.

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Psychological Evaluation

Your evaluation can include a meeting with either or both a psychologist or psychiatrist who will complete an evaluation. This is done to assist in determining whether a potential recipient will be able to comply with the necessary treatment regimen before and after transplant. This evaluation helps to provide us with insight into how you function emotionally and would be able to cope with the stress of the transplantation experience. If transplantation is recommended, they can help you and your family to deal with the stress of chronic illness, the difficulties of the long waiting period, the operation itself, and recovery process.

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Listing Decision

When all evaluation processes are completed, your case will be reviewed by the transplant team during the transplant selection meeting to determine if transplantation is an option of treatment for you. The transplant team will review the results of all tests and carefully consider all factors before a final decision is made. The team will explore situations that they believe may increase the risk of a successful outcome.

When the team makes a decision to put you on the transplant list, you will be notified in writing of the team's decision. If the team determines transplantation is an option of treatment for you and decides to place you on that list you will meet with a coordinator after notification to complete a Listing Orientation and contract which will overview our programs expectations while listed. 

Listing on the National Waitlist is based on medical urgency; your status can vary based on your health, and will be followed closely by the transplant team. For more information on these statuses and the wait list, you can visit www.unos.org or ask your Transplant Coordinator.

The following are the three (3) main classifications:

  • Status 1A: This is the most urgent; these people are in the hospital with mechanical support and multiple IV medications, with usually a shortened life expectancy in the opinion of the medical staff.
  • Status 1B: Is slightly less urgent; these people are usually on a type of continuous medication that helps the heart function.  Also, they could possibly be at home with a Left Ventricular Assist Device.
  • Status 2: The least urgent status.

Statistics and Outcomes

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