In the New York region, most patients wait from 10-14 months for their replacement organ(s) to become available, depending on their blood type. 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 during the wait, recommending and facilitating the support services you may require.
Staying Close to the Hospital
The Lung Transplant Program does not require that you relocate to the Manhattan area when you become a candidate; however, you must be able to reach the campus in northern Manhattan within several hours of receiving notice that your new organ is available. Your transplant coordinator will have helped you plan your transportation well in advance of this call.
Staying in Touch
Once you have been registered with UNOS, it is vital that you stay in touch with the lung transplant team. Your transplant coordinator must be notified of any changes in address and phone numbers, including cell phones. If you travel for any reason, whether business or pleasure, let the transplant team know. Be sure to contact them if you have any serious illnesses or hospitalizations during the waiting period.
When an organ becomes available, a transplant coordinator will contact you immediately and request that you go to the Admitting Office or directly to the operating suite. It is important that you plan ahead and are prepared to travel to the hospital on very short notice. Your social worker can help you plan these arrangements well in advance.
Preparing for Your Operation
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 check-ups.
- 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.
Monitoring Your Health While Waiting for Transplantation
Once you are placed on the 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.
Until the time of your transplant surgery, you will visit the Beverly & Arthur Shorin Comprehensive Outpatient Transplant Center at least every three to four months. 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.
During this waiting period, you will periodically undergo tests to ensure new medical problems are immediately identified and existing ones are regularly monitored. These tests include:
- Six-minute walk test – every three to six months
- Echocardiography – every six months for single lung transplant candidates
- Sputum culture and sensitivity – every three to six months for patients with bronchiesctasis, specifically cystic fibrosis
- Cardiac stress test – every year for patients with coronary artery disease. Some patients may require an annual coronary angiography.
- Blood tests and chest x-ray – every year
- Panel reactive antibody (PRA) test to monitor immune system activity – repeated in certain patients every three to six months
- ABG to measure CO2 levels
You will be encouraged to participate in an outpatient pulmonary rehabilitation program or a home exercise program prescribed by your transplant team. You should begin this program as soon as you are notified that you are a candidate for lung transplantation. If you are relatively fit, your recovery from surgery will be easier.
Your immunizations must also be updated while you're waiting for transplantation. It is recommended that you have:
- Pneumovax – every five years
- Influenza vaccine – yearly
- Tetanus toxoid – every ten years
- Hepatitis B vaccine
- Varicella vaccine for non-immune patients
As part of the pre-transplantation care, candidates are required to attend a special two-hour patient education seminar led by the social worker. The first hour is educational, the second offers both candidates and post-surgical lung transplant patients an opportunity to share their experiences and concerns with each other (see Support Services).
Removal from the Organ Donor Waiting List
It is possible that candidates can be removed from the donor organ waiting list if health issues develop that would prevent them from undergoing the surgery – or if their pulmonary disease shows significant improvement.
Smoking or substance abuse will automatically remove candidates from the active waiting list. During a six-month probationary period, they will be required to join a formal abstinence program and demonstrate abstinence throughout that period. They will be placed back on the waiting list when they meet those requirements. However, if a relapse occurs, they will be permanently removed from the waiting list.