Returning to His Breath: Phil’s Lung Transplant Story
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Contact Information
Massachusetts General Hospital
55 Fruit Street
Boston,
MA
02114
Phone: 800-876-5864
The Lung Transplant Program at the Massachusetts General Hospital Transplant Center provides world-class lung transplant surgery and care to patients with end-stage lung disease. Our multidisciplinary care team comprises experts in cutting-edge treatment options and clinical trials for people with end-stage lung disease, delivering the best possible outcomes after lung transplantation.
The Lung Transplant Program at Mass General was established in 1990 as the first Medicare-approved lung transplant program in New England.
A lung transplant is a surgery that replaces either one (single) or two (double) diseased, or failing, lung(s) with a healthy lung(s) from a deceased donor. Damaged lungs can be life-threatening, as they make it difficult for the body to get the oxygen it needs to survive. Lung transplants are specifically performed in patients with severe lung conditions (end-stage lung disease) that can’t be treated by any other therapy or medication.
There are three main types of lung transplant:
Your doctor will recommend a lung transplant only after all other treatment options have failed and if you have one of the following conditions.
Pulmonary fibrosis is a progressive disease that causes damage to the interstitial tissues, or the cells that live between the blood vessels and other structures inside the lungs. This damage causes lung tissue to scar and stiffen, which prevents it from expanding and functioning normally.
Often, the cause of pulmonary fibrosis is unknown (idiopathic), but smoking, environmental exposures, and genetics can play a role. There are medications that are designed to slow the progression of the disease. However, lung transplant is the only way to cure pulmonary fibrosis completely.
Emphysema is a chronic condition that is part of a group of lung diseases called chronic obstructive pulmonary disease (COPD). Emphysema causes damage to the walls of the air sacs (alveoli), which are critical to facilitating healthy airflow. They are located at the end of the breathing tubes (bronchial tubes) in the lungs. When they are damaged, the bronchial tubes collapse from the lack of support and air becomes trapped in the lungs.
The top risk factor for developing emphysema is smoking. There are medications that are designed to slow the progression of the disease. However, lung transplant is the only known way to cure it completely.
Chronic bronchitis is another COPD condition. Chronic bronchitis is characterized by long-term inflammation of the breathing tubes (bronchial tubes), often associated with recurrent infections.
Smoking is the most common cause of chronic bronchitis. Environmental factors, such as air pollution, may also play a role in the development of chronic bronchitis. Lung transplant is recommended for severe cases of chronic bronchitis.
Cystic fibrosis is one of the most common chronic lung diseases in young adults and children, affecting various organ systems such as the respiratory, digestive and reproductive tracts. It is an inherited (genetic) disease that causes mucus to build up in the breathing passages and restrict airflow.
Lung damage caused by cystic fibrosis can be permanent, but newer medications have shown tremendous benefit in improving lung function, reducing respiratory symptoms and improving quality of life. In cases where cystic fibrosis does not respond to medication or when the lung disease becomes too severe, lung transplantation may be recommended.
Pulmonary hypertension is high blood pressure in the pulmonary arteries in the lungs, which disrupts blood flow from the heart to the lungs. As the pulmonary arteries become narrow, the heart is required to work harder to pump oxygen-poor blood to the lungs.
Pulmonary hypertension is a rare condition that is most often the result of a complication from heart or lung disease, but can also be caused by environmental factors or chronic blood clots in the lungs. If left untreated, it can lead to serious complications, including heart failure. Lung transplantation can cure pulmonary hypertension and allow the heart to recover.
The diseases listed above are the ones most commonly treated by lung transplantation, but there are many other conditions for which lung transplantation may be recommended, including:
Lung transplantation can help patients live longer, better quality lives. Our goal at the Lung Transplant Program is to partner with you and your loved ones to create a care plan that meets your goals and improves your quality of life before, during and after surgery. Our goal is always to provide treatments that allow you do the things that mean the most to you.
At the Mass General Transplant Center, you will be cared for by a multidisciplinary team of lung disease specialists that are leaders in providing comprehensive, effective treatment.
Your care team will include transplant pulmonologists, transplant surgeons, transplant nurse coordinators and advanced practice providers, cardiologists, critical care specialists, endocrinologists, financial services representatives, immunologists, infectious disease specialists, gastroenterologists, nutritionists, pharmacists, physical therapists and pulmonary rehabilitation specialists, psychiatrists, and social workers.
At Mass General, our patients benefit from cutting-edge techniques and technologies that can increase the chances of you getting a good match, decrease your waiting time, and help maintain the health of the donor lungs until your surgery. These include:
The specifics of these techniques and their possible role in your transplant will be discussed with you during your evaluation.
All lung transplant candidates are carefully evaluated to determine if lung transplant is the appropriate treatment, or if their condition can be managed through alternative interventions. Your transplant coordinator will guide you through your initial evaluation by gathering your medical information, previous test results, and medical history, including prior hospitalizations.
As part of your evaluation, your care team will conduct:
Your transplant team will consider all this information when determining your eligibility for a lung transplant. Eligibility requirements take into account age, physical fitness, severity of your lung disease, other medical conditions, and more.
In order to qualify for lung transplant surgery, patients must:
Lung transplant surgery is not suggested for all patients. If your care team determines that lung transplantation is not the appropriate treatment for you, alternative methods of care may be recommended, such as:
Once your candidacy for a lung transplant has been approved, you will be placed on the United Network for Organ Sharing (UNOS) waiting list. Unlike other organ transplant programs that apply a seniority method to determine a patient’s position on the organ donor list, lung transplant programs utilize a unique system based on patients’ transplant urgency called the Lung Allocation Score (LAS) system, which ensures that patients who most need a lung transplant receive priority over those in better health. In addition to this score, the wait time is affected by factors such as blood type, immunologic match, and the patient’s height.
While you are on the waiting list, your Mass General care team will closely monitor your health and help you create a health plan to improve your quality of life as you wait for a donor organ. This plan may include:
Once on the list, our team will begin looking for a good donor match for you.
When a deceased donor lung is available, you will receive a call from our transplant coordinator asking you to come into the hospital for the lung transplant. Since this call can come at any time during the day or night, any day of the week, it is important for the transplant team to be able to reach you promptly. You should provide our center with all of your phone numbers, as well as the phone numbers of a few emergency contacts, so that we can contact you when needed. The lung transplant surgery generally happens within 24 hours of the notification to come to the hospital.
A lung transplant is a complex operation that replaces one or both of your lungs with healthy lungs from a deceased organ donor. The operation is performed by an expert team of transplant surgeons, anesthesiologists, perfusionists and nurses who work together to replace your lungs. A lung transplant can be performed using several different approaches or types of incision, including:
The approach is determined by your specific condition, and will be discussed with you during your surgical evaluation. A single lung transplant usually takes four to six hours, while a double lung transplant can take eight to 12 hours.
During your transplant, the surgical team may use a special pump to either partially (VA-ECMO) or fully replace the function of your heart and lungs. This allows the team to operate on your heart and lungs while the rest of your body is fully supported and protected. Currently, most transplants are being performed with the help of VA-ECMO, but the final determination is made in the operating room by your surgeon. In rare cases, ECMO may be used following your transplant surgery so that your new lungs have time to recover.
After your surgery, you will recove in our cardiac surgery and thoracic transplant intensive care unit where a sub-specialized team of intensive care doctors, advance practice practitioners, nurses, and respiratory therapists will work alongside your transplant team to help you recover from surgery. Once you no longer require intensive care, you will finish your hospital stay in our dedicated unit for post-transplant patients.
Our commitment to our patients’ wellbeing extends to their after-surgery needs. Our team will help coordinate your care following discharge and even once you’ve returned home. We are very involved in our patients’ physical recovery, and we support them as they transition back to their regular lives following transplant.
Lung transplant requires long-term adjustments to ensure lifelong optimal health. Generally, you can expect to receive from your care team:
Rejection is the natural process of your immune system identifying your new lung(s) as an intruder and attempting to remove it as a way to protect the body. There are different types of rejection, each requiring unique testing and treatment. Every patient is different, and you will continue to work with your Mass General care team to monitor the state of your new lung(s) after transplant. Immunosuppressants, medications that suppress your automatic immune response, are a necessary step in transplant after-care to prevent rejection.
Due to the vulnerability of your immune system after surgery, you are more susceptible to infections. This is particularly true within the first year following lung transplant. Antibiotics are effective at treating most lung transplant-related infections. Your care team may also prescribe other medications to help prevent specific types of infection.
The Mass General Lung Transplant Program is a regional research center with an active clinical trials program in both lung transplantation and many of the diseases that cause the need for transplantation. Recently, our team helped complete an innovative trial for transplanting lungs from HCV-positive donors, which has since become the standard of care at lung transplant programs nationwide.
Developing technologies include:
The Mass General Lung Transplant team guides patients through every stage of care with a multidisciplinary team of doctors, nurses, pharmacists, case managers, financial coordinators, and other clinicians to help navigate the transplant process.
Brian Keller, MD, PhD
Medical Director, Lung Transplant
Nathaniel Langer, MD
Surgical Director, Lung Transplant
Katy Black, MD
Pulmonologist
Jason Griffith, MD, PhD
Pulmonologist
Michael Feldman, MD, PhD
Pulmonologist
Eriberto Michel, MD
Cardiac Surgeon
James Mojica, MD
Pulmonologist
Isabel Neuringer, MD
Pulmonologist
Asishana Osho, MD, MPH
Cardiac Surgeon
Judith Restrepo, MD
Psychiatrist
Jacqueline Clark, PharmD, BCPS, BCTXP
Sarah Mietz, PharmD, BXTXP
Georgina Waldman, PharmD, BCTXP
Tamara Chase, CNP
Orlaith Delgado, CNP
Robert Ober, FNP
Aliza Kosyakovsky, CNP
Joe Digrazia, RN
Ericka Gruss, RN
Nicole Prince, RN
Tonya Yurjevic, RN
Peggy Aliberti
Monique King
Yoshida Luu-Tran
Jaimee Singh
Natali Rauseo-Ricupero, LCSW
Gretchen Garlow, MS, RD, LDN
Erin Vuijk, MS, CCC-SLP
Tatiana Mendieta
Ella was diagnosed with pulmonary veno-occlusive disease, a rare and often fatal form of pulmonary hypertension. To save her life, Ella underwent a complex double-lung transplant at the Mass General Transplant Center.
To book an appointment for an evaluation for lung transplant at Mass General or to obtain more information, please call 800-876-5864 or email MGHLungTransplant@partners.org. Your primary doctor or pulmonary rehabilitation program may also call/email on your behalf to refer you to the Mass General Lung Transplant Program.
Lung transplant may be recommended for those with severe lung conditions that have not responded to other treatments, such as pulmonary fibrosis, emphysema, chronic bronchitis, cystic fibrosis, and pulmonary hypertension, among others.
Lung transplant is not an appropriate option for every patient, and your care team will help you consider all of your options. Eligibility requirements take into account age, physical fitness, severity of your lung disease, other medical conditions, and more.
In order to qualify for lung transplant surgery, patients must:
Your lung transplant team will conduct a comprehensive evaluation to determine whether lung transplant surgery is the best choice for you relative to your health.
Your care team will closely monitor you after surgery to assess the risk of organ rejection. If you are experiencing alarming symptoms after transplant surgery, please contact your care team immediately as these symptoms could be a sign of organ rejection. Immediate diagnosis and treatment enable quicker, more effective prevention of organ rejection.
Your care team will run tests to diagnose lung transplant rejection, and then devise a plan to help your body accept the new lung. This usually involves adjusting your immunosuppressive medications and supporting your lung function while the episode is treated. Clinical trials may also be available for certain types of rejection or when standard treatments are not successful.
If you are on the wait list, your Mass General lung transplant team will work with you to create a protocol that will aim to improve your quality of life and ensure your optimal health for when a donor lung becomes available. This plan may include:
As a donor lung can become available at any time, we recommend that you prepare a transportation plan in advance and a bag of essential items for your hospital stay.
Your care team will discuss the qualifications in your lung transplant evaluation. Generally, patients who qualify for lung transplant:
During your evaluation, you will meet with a Mass General Transplant Center financial counselor who will review your insurance and help you obtain insurance authorization for your transplant and follow-up care. They will be able to answer all of your questions related to transplant and finances.
This depends on your specific situation. The average hospital stay following a lung transplant is about three weeks but can be influenced by a variety of factors. Some patients may need to go to an inpatient rehabilitation hospital for additional strength and conditioning before going home after their lung transplant. An outpatient pulmonary rehabilitation program is required for every patient and helps accelerate recovery after transplant, but full recovery from a lung transplant can take six to nine months or more.
is a destination for those requiring transplant, and is the only center in the region to offer adult transplantation for every organ.
When you support the Massachusetts General Hospital Transplant Center, you are making a significant contribution to advancing care at the hospital.
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