Pediatric Lung Transplant Becoming a Patient
Jackson Health System has resumed normal operations at a majority of its facilities.
The UHealth Jackson Urgent Care at Cutler Bay is now open
The UHealth Jackson Urgent Care center at Keystone Point is now open
The UHealth Jackson Urgent Care center at Country Walk is now open
The Jefferson Reaves remain closed due to power outages.
To reschedule an appointment, please call 305-585-6000. Updated information for UHealth Jackson Urgent Care centers is available at JacksonUrgentCare.com.
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 Lung Transplantation and when is it an Appropriate Treatment?
- How do I know if I am a candidate for Lung Transplant:
- How do I become an MTI patient?
- Can I refer myself to MTI?
- What will I need to complete my referral process?
- How long will I have to wait for an appointment after my complete referral is received?
- What is my next step to becoming a Transplant Candidate?
- What should I bring to my initial appointment?
- Lung Transplant Evaluation
- An Overview of the Evaluation Process
- When and where will testing be done?
- Nutritional Evaluation
- Social Work Evaluation
- Psychological Evaluation
- Listing Decision
What is Lung 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.
Lung transplantation is the surgical placement of a healthy lungs from a human donor into the body of a person whose own lung is badly diseased. The fact that a referral has been made means at some point, a physician has indicated that transplant should be considered.
For many, lung disease is a chronic condition, and you may be very knowledgeable about your illness. Lung transplant can benefit patients with advanced lung disease for which medical therapies are not effective. These lung disease include pulmonary fibrosis, connective tissue disease, emphysema, pulmonary hypertension, sarcoidosis, lymphangioleiomyomatosis (LAM), pneumoconiosis, bronchoalveolar carcinoma (BAC), bronchiectasis, and cystic fibrosis (CF).
A lung transplant is a surgical procedure to replace a diseased or failing lung with a healthy lung, usually from a deceased donor. Depending on your medical condition, a lung transplant may involve replacing one of your lungs or both of them. In some situations, the lungs may be transplanted along with a donor heart.
Many factors are considered when assessing a patient for a lung transplant, so it may not always be an option for any given patient. Evaluation for lung transplant is a very thorough, detailed process in order to ensure it is the best option for your condition.
How do I know if I am a candidate for Lung Transplant:
What criteria must be met for a lung transplant/who gets a lung transplant
- Untreatable end-stage lung disease due to any cause
- Absence of other significant medical diseases
- Substantial limitation of daily activities
- Limited life expectancy
- Consistent and reliable social support system
- Be able to meet the financial obligation of transplant
Relative and Absolute contraindications to lung transplantation include:
- Serious disease of other organ systems
- Active infection outside the lungs
- Smoking or substance abuse
- Poor nutritional status, severe obesity or malnourished state
- Severely limited functional status with poor rehabilitation potential
- Colonization of pan resistant organisms
- High dose steroids Greater than 10mg steroids per day with inability to wean
- Absence of strong social support system or significant social issues
- Active malignancy within the past 5 yrs
(with the exception of basal and Squamous cell carcinoma of the skin
- Non adherence to medical therapies and appointments
- Severe osteoporosis
- Ventilator dependency
- Severe esophageal dysmotility
This selection criteria apply for combined heart-lung transplant referrals. In addition, patients must have significant cardiac dysfunction.
- Potential patients please view the Criteria for Lung Transplantation for more detailed information.
At MTI, you will become partners with your health care team, which consists of a transplant surgeon, transplant pulmonologist, 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.Back to Top
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 pulmonologist 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.Back to Top
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.Back to Top
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
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.Back to Top
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.
- Criteria for Lung Transplant
- Consent Package:
High risk Donor Consent
- Mandatory Evaluation Orientation Presentation
Contact us for more information, or call 305-355-5135 or 305-355-5138 from 8:30 a.m. to 4 p.m. EST.Back to Top
What should I bring to my initial appointment?
You will need to bring any diagnostic testing results (pulmonary function test, cat scans, 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.
- Immunization records (Flu shot, Pneumonia, Tetanus and any other you may have)
- Copies of drivers license and insurance cards
- A sweater
- Reading material
- Additional oxygen cylinders. When you arrive to the clinic, please ask for an oxygen tank to conserve your supply.
To be considered as a candidate for a Lung transplant, you will first undergo an initial consult visit with our pulmonologist. 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 lung 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 lung 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.Back to Top
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.Back to Top
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)
(to assess the heart's valves and mechanical pumping function)
- Right and left heart catheterization
(to assess the pressures inside the heart, which helps your physician determine your heart's functioning capability and to look at your arteries around your heart)
- Pulmonary function tests with 6 minute walk test
(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)
- Computed tomography scan (CT scan) of chest
(look for possible lung abnormalities and other conditions / abnormal anatomy)
- Quantitative Lung Scan
Measures the amount of disease in each lung
- 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.
- Bone Density
Measures density of bone to detect for osteoporosis and risk of fractures
- Mammogram / PAP smear for female patients over 35 years of age.
- Immunization review
(Hepatitis A, Hepatitis B, Pneumonia, Flu, Tetanus and Varicella)
- Optional Testing / Consults as directed by your past medical history
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.
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:Back to Top
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.Back to Top
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.Back to Top
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.
Please understand that abnormal test results might require further investigation. The goal of pretransplant testing is to ensure you will be able to undergo transplant without significant risk. Lung transplant is not recommended for those who are too sick to go through the surgery; whose lung disease will likely affect the new lung and those who have severe disease of other organs.
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 Lung Allocation Score (LINK to LAS Brochure); your status can vary based on your health, and will be followed closely by the transplant team. Patients listed for a lung transplant will be assigned a Lung Allocation Score (LAS) calculated from the following medical information:
- Forced Vital Capacity
- Pulmonary Artery Pressure
- Oxygen at rest
- Body Mass Index
- Insulin dependent diabetes
- Functional status
- Six (6) minute walk distance
- Ventilator use
- Pulmonary Capillary Wedge Pressure
These medical data are required to be renewed every six months, with the exception of heart catheterization. If any of these results are more than six months old it will greatly affect a patient’s score. Each patient’s LAS may fluctuate based on the most current test results. The Lung Allocation Policy is designed to provide lungs to those patients who are in the most need. Patients with the highest LAS are allocated lungs first in this system. For more information on these statuses and the wait list, you can visit United Network for Organ Sharing (UNOS). or ask your Transplant Coordinator.Back to Top
Pediatric Lung and Heart-Lung Transplant
Highland Professional Building
1801 N.W. 9th Avenue
Miami, FL 33136