Preparing For A Lung Transplant
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People that decide to pursue a lung transplant are placed on a waiting list. Being "placed on the list" means their names and certain medical information are entered into the national database overseen by the United Network for Organ Sharing (UNOS).
When a lung donor is identified, a group of surgeons evaluate the lungs. Because of time constraints, people are called in to the hospital before the inspection is completed. If the donor lungs meet transplant criteria, the transplant surgery proceeds. But if for any reason the lungs are determined to be unsuitable, the surgery is cancelled.
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There are many things people can and should do while waiting for a lung transplant, including:
- Continue to exercise regularly to promote endurance and speed up recovery after transplant.
- Follow dietary guidelines.
- Carry a cell phone when not at home. The lung transplant team needs to be able to contact people on the waiting list at any time.
- Find ways to manage the stress of waiting and coping with chronic illness in order to maintain a positive outlook.
- Notify the transplant program when not feeling well, when starting a new medication and within 24 hours if hospitalized.
- Set up an advanced directive and identify a power of attorney.
- Set up a support group of family and friends to help post-surgery.
- Make arrangements for transportation to hospital for transplant.
- Pack your bags in advance, including a 24- to 48-hour supply of medication and oxygen if needed.
- Bring enough oxygen for the round trip.
- Confirm temporary living arrangements if necessary.
- Become familiar with post-transplant care.
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The following tests are performed before lung transplant surgery:
- Chest x-ray and, in selected patients, CT scan
- Quantitative ventilation-perfusion lung scan
- Echocardiogram and electrocardiogram
- Complete pulmonary function tests and arterial blood gas
- Six-minute walk test and cardiopulmonary exercise study
- Right heart catheterization; in patients above age 45 and with risk factors for coronary artery disease — left heart catheterization for coronary angiography
- Cardiac stress test in selected patients
- DEXA (dual energy x-ray absorptiometry) to measure bone density
- Testing for blood and tissue type
- Antibody testing to measure the immune system's level of activity
- Barium upper gastrointestinal series in selected patients
- PPD and anergy testing for tuberculosis
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When your transplant team is alerted that a compatible donor organ is available for you, your coordinator will immediately contact you. Upon receiving the call you will be admitted to the cardiothoracic surgical service. There you will undergo a physical examination, chest x-ray and an EKG. Blood testing for final tissue typing will also be performed. While you are being prepared for surgery, members of your transplant surgical team will have traveled to the organ donor's hospital to personally ensure that the organ is satisfactory. If the team determines that an organ is damaged or infected, the surgery will be canceled. Meanwhile, you will be transported to the operating room. Once the organ has been approved for you, you will receive general anesthesia – and the surgery will begin.
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You will be immediately registered with the United Network for Organ Sharing (UNOS), a not-for-profit organization contracted by the federal government to operate a patient waiting list and organ matching system. It assures equal access for every patient needing an organ for transplantation. The transplant physician and coordinator will meet with you and members of your family to discuss the decision. You will also have this meeting even if you are not selected as a transplant candidate. A letter detailing the team's decision as well as a summary of the testing will be sent to your referring physician.You will receive a letter documenting the date of the UNOS listing and the requirements for remaining on the list.
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It may take many months for replacement organ(s) to become available. During your wait, it is critical for you to maintain good nutrition and keep up rehabilitation efforts under the care of your local physician. Most transplant recipients will tell you that this waiting time was the most difficult part of their entire transplant experience. The transplant coordinator and social worker serve as your advocates, recommending and facilitating the support services you may require.
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Once you are placed on the United Network for Organ Sharing (UNOS) waiting list, a nurse practitioner/PA and transplant pulmonary specialist will oversee your care, explaining all stages of the process, expediting tests and consultations, and being available to answer questions you or your family members may have. Also during this period, you will continue to be under the care of your referring physician for your primary pulmonary care. Communication between your physician and the transplant team will be ongoing.
If you are having a transplant at Columbia University Medical Center, you will visit the Beverly & Arthur Shorin Comprehensive Outpatient Transplant Center at least every three to four months until the time of your transplant surgery. During these visits, your basic health will be evaluated -- with emphasis on any medical issues that could affect your status on the organ waiting list. Psycho-social issues related to the transplantation will be addressed, if needed, by the social worker and psychiatrist. Additionally, these visits with your transplant team provide you with an opportunity to address any questions or concerns you may have.
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Your pre-transplantation and post-transplantation coordinators will visit you together every day until you are discharged from the hospital. They will answer any questions you may have, review your medications as well as discuss possible side effects and drug interactions, and prepare you for necessary lifestyle changes and follow-up regimens. In general, they continue to educate you and your family on the often complex post-transplantation process.
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Maintaining or even improving your health during this waiting period is vitally important. Some guidelines include:
- Exercise as directed by your physician. Keeping active, if possible, will improve your flexibility and endurance and may shorten recuperation time following your surgery.
- Consult your primary physician and the transplant team for periodic checkups.
- Counseling is available to help you cope with what is often a stressful and emotional time for patients and their families.
- Follow the diet guidelines and rehabilitation schedule recommended by your physician. This will help you fight fatigue and other health problems that may be associated with lung disease.
