Do you need a transplant? How to choose the right program

If your physician told you that you needed an organ transplant, would you know how to navigate the complex process of choosing a transplant program and surgeon? Fortunately, there are several resources you can turn to for help.

One good place to start exploring and evaluating transplant programs is the non-profit United Network for Organ Sharing (UNOS). The organization is responsible for ensuring fair access to available organs, maintaining the national patient waiting list and organ allocation system, and coordinating the matching of organs with potential recipients.

The site has data for every transplant program in the U.S., including:

• survival rates
• median waiting times
• current waiting list numbers

The information is organized by organ or disease so it’s simple to research your specific situation.

A personal health advisor can be another valuable resource. An advisor can help you create the comprehensive curated medical record you’ll need to ensure all the physicians involved in your transplant have your complete medical information immediately available. Your advisor can provide you and your family with information about the transplant process, life after transplantation, and the latest research, all in language that’s easy to understand.

An advisor can also help you navigate the complexities of the transplant process. One of our members had been rejected for a lung transplant at a major hospital because of age and other chronic health conditions. We reviewed all of his health records and forwarded a complete medical summary to several transplant programs, including Bartley Griffith, MD, Chief of Cardiovascular Surgery and Lung Transplantation at University of Maryland Medical Center and a member of the PinnacleCare Medical Advisory Board.

After an in-person evaluation, UMMC accepted the member for their lung transplant program and he received the transplant soon after. After surgery, he told his advisor that PinnacleCare made all the difference in giving him this second chance and the ability to return to a normal life.

What questions should you ask when choosing a transplant program?

When seeking the most appropriate center for your transplant, there are several questions you should ask.

• How many transplants of the organ you need does the center perform each year? A larger volume of transplants means that the transplant team has more experience.
• What are the short- and long-term survival rates? Look not only at the center’s survival rates, but also compare actual rates with expected rates based on U.S. patient mortality rates analytically adjusted for recipient health and other factors that can affect the transplant outcome.
• How long is the average patient on the waiting list before receiving a transplant? You need to know how long the wait is, because, the sooner the transplant can be performed, the better. Also, comparing the center’s wait times to national data may help you decide to choose a center in another region.
• How many organs are available in the area versus how many transplant candidates are on the waiting list? This question evaluates the competition for organs, comparing the population served with the potential and historical availability of organs.
• Is the center accredited by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), an independent, not-for-profit organization that evaluates U.S. health care organizations? You should also ask if the surgeon and other physicians involved in the process are board certified.
• How stable is the transplant team? Learn if any key members of the team have recently moved to another center, who has replaced them, and what experience and expertise the new team members possess.
• Does the center offer the complete spectrum of post-transplant follow-up care and resources? Follow-up care is especially critical in the first year post-transplant. If you receive your transplant at a center far from home, find out if the center can coordinate follow-up through medical providers with transplant care experience in your home community. You should also ask what support services are available to help you and family deal with post-transplant daily living.

Learn more about how a personal health advisor can help you with the complex process of getting an organ transplant.