The list of patients waiting for an organ transplant grows each year and significantly outpaces the availability of transplantable organs. During the pandemic, deceased-donor transplants reached an all-time high. According to the United Network for Organ Sharing (UNOS), the private, non-profit organization that manages the nation’s organ transplant system, 39,035 transplants were performed between December 2020 and Feb. 7, 2021. 107,938 people need an organ transplant, and 65,622 of that number are waiting list candidates (https://unos.org/data/transplant-trends/).
This article will explore the pre-transplant and post-transplant process in hopes of providing insight for case managers who may have the opportunity to provide support for patients during one of the most important events of their lives.
MEMBERS OF THE TRANSPLANT TEAM
Team members work with the patient and family to help ensure a seamless transition through the various steps of the transplant process. It takes more than 100 people to make a transplant happen.
- Physicians from different specialties provide surgical and medical treatments.
- Physician assistants/nurse practitioners supervise transplant evaluation.
- Anesthesiologists perform pre-operative examinations, testing, signing of surgical consent forms and anesthesia management intra-op and post-op.
- Financial transplant coordinators assist with understanding the cost of a transplant and work with the insurance company for the approval of evaluation and potential transplant surgery.
- A pre-transplant coordinator is an RN who provides education about the evaluation and potential surgery, monitors lab work, testing and appointments.
- A waitlist transplant coordinator is an RN who provides education and guidance while the patient is on the waitlist.
- A post-transplant coordinator is an RN who stays connected to the patient for life, providing education, guidance, adjusting medications as needed, monitoring labs, tests and appointments following the transplant.
- A transplant social worker provides emotional support, helps the patient navigate the healthcare system, discusses recovery needs after the transplant and encourages a plan to meet those needs and pay for necessary post-surgery services.
- An RN case manager provides support, education and guidance through the healthcare system during the transplant process.
- A dietitian explains healthy food choices and develops a dietary plan that will help to prevent nutrition-related illnesses or problems.
- A pharmacist analyzes all medications for interactions and contraindications, adjusts medications as needed and strives to keep drug costs low by finding medications covered by insurance or enrolling the patient in special prescription programs.
- A chaplain can assist with emotional and spiritual issues.
- A living donor is a healthy person who donates an organ to someone in need.
- A deceased donor/cadaver donor is a deceased person who chose to be an organ donor.
- A donor transplant coordinator is an RN that coordinates pre and post-donation care of the donor. This is a separate coordinator than the pre and post-transplant coordinator.
- The patient and family should become active members of the team. https://news.vumc.org/2021/01/28/pre-transplant.
There are several phases of the transplant process. The first phase is considered the pre-transplant evaluation phase. Some transplant centers require a referral from a physician. The financial transplant coordinator will coordinate with the insurance company to determine costs covered by insurance. Without proof of finances, the patient will not be placed on the UNOS waiting list. The National Foundation for Transplants (NFT) is one organization that can help the patient in securing the finances needed to meet the requirements for initial placement on the UNOS list. Organizations like NFT can also assist with the cost of insurance premiums and the cost of post-op anti-rejection medications.
The evaluation phase is extensive and is usually done as an outpatient unless the patient is critically ill and requires hospitalization. The evaluation includes appointments with the transplant team and key specialists, lab work and diagnostic testing to confirm that the patient is healthy enough for a transplant. There is usually an education class where the patient and family receive pertinent information about the transplant process and have the opportunity to ask questions. After the evaluation is completed, the multidisciplinary transplant team reviews the case. Outcomes could include approval, disapproval or the necessity of additional testing followed by another case review. Once all the recommendations from the transplant team are completed and the patient is determined to be an acceptable candidate, the patient’s name and other key medical information are entered into the UNOS database and the patient will be placed on the transplant waiting list. The patient could be on the waitlist for a day, weeks, months or years. The pre-transplant coordinator will be in regular contact during and between regular clinic visits until the transplant. The pre-transplant coordinator will discuss expectations and how to be ready for a transplant when an organ becomes available. The pre-transplant coordinator can connect the patient with someone who has experienced a transplant to hear firsthand about the experience. To help make sure the transplant process is a long-term success, the transplant team wants the patient to stay as healthy as possible for surgery. Patients need to continue to take care of themselves, continue medications and keep physician appointments. The healthier the patient is before the transplant, the more successful the transplant will be. A positive outlook will also improve the chances of a successful experience. Education about the procedure and life after transplant is part of the care plan for patients and their families. If there are any changes to their health plan coverage during this time, it is imperative to let the financial coordinator know. While on the waiting list, the patient needs a reliable phone with voice mail as they do not want to miss “the call.”
After the transplant, it is important for the recipient to have healthy eating habits and a regular exercise program. A healthy diet will help manage or prevent the side effects of any new medications. It is especially important to follow food safety guidelines at home, when shopping for food and when eating out. Of most importance is taking all medications as prescribed. The recipient will be taking anti-rejection medications for the rest of their life. Anti-rejection medications suppress the immune system, making the recipient more susceptible to infections and increasing the risk of developing skin cancer, non-Hodgkin’s lymphoma and other solid tumors. Post-operative wound care is also very important. The post-transplant coordinator will be in close communication with the recipient and their caregiver answering questions, analyzing lab work and adjusting medications as needed. The recipient will have frequent appointments with the transplant team. These appointments will be less frequent over time as the recipient is recovering. In most cases, the recipient should be able to resume activities of daily living such as driving, household chores, work, school and some sports activities in three to six months after the transplant procedure.
An organ transplant significantly affects the life of the recipient, donor and families. The impact of these changes can be overwhelming, stressful and emotional. The recipient and family may experience emotional ups and downs. Some changes may be difficult to cope with. Having a solid support system of family, friends and healthcare providers is especially important. Receiving a transplant is a long-term, expensive process. There are immediate and long-term costs in the care of the transplant recipient. Some health plans do not fully cover medications, and that can be very expensive. Plans need to be made for costs such as parking, transportation, lodging, medications, lab work, physician appointments and hospital charges. The case manager plays a unique role during the transplant process. Some case managers will have the opportunity to engage with the patient and their family through all the phases of transplant process providing support, guidance and education. Other case managers may only engage with patients and families during one stage of the transplant process. Case managers are in a unique position to discuss organ donation and transplants to increase public awareness and, hopefully, increase the number of individuals who commit to organ donation as their last gift of love. The gift of life is so precious, and the transplant process is truly amazing. This second chance at life holds significant meaning and hope for so many.
Janet Coulter, MSN, MS, RN, CCM, is a transplant case manager. She is serving her fifth term as president of Southern Ohio Valley CMSA and is on the editorial board of CMSA Today.