Read This Before You Have a Transplant

Have you been told that you are going to need an organ transplant and you don’t know where to look for information because you don’t even know what questions to ask?  Of course, the best information source for your specific situation is your doctor and the social work department at your transplant center, if you have one.  Listed below are several additional websites where you can seek to learn more about transplants.  Note:  this is not an exhaustive list but only a starting point.

Transplant Centers (srtr.org) 

The Scientific Registry of Transplant Recipients’ mission is to provide advanced statistical and epidemiological analyses related to solid organ allocation and transplantation in support of the Department of Health and Human Services and its agents in their oversight of the national organ transplantation system. Here, you can sort all the transplant centers in the United States by organ, by distance from your zip code, and view performance statistics that include:

• number of deceased donor transplants performed per year,
• number of living donor transplants performed per year (if applicable),
• survival on the waitlist,
• getting a transplant faster,
• 1-year survival rates. 

This data is useful in comparing the performance of specific transplant centers against others on a clear set of metrics.  If you have the ability to relocate closer to a transplant center that may perform better than the one nearest to you, this data can aid you in making that decision. This is a video detailing how to use the SRTR website:  https://youtu.be/rjIYSl-nxyc

The United Network of Organ Sharing (UNOS) divides the country into eleven different zones.  Available organs are typically distributed within an UNOS region. Current UNOS map shown below. 

There is currently a proposal to change the current zones with one of several options.  The proposed changes to the UNOS territories are open for public comment on July 27 and close Sept. 19. The last opportunity to provide feedback on these items will be prior to 11:59 p.m. ET on Sept. 19.   More information about the public comment period and other proposed changes open to public comment are available here:  Public comment – OPTN (hrsa.gov) 

UNOS runs a website called “Transplant Living” for those who are just beginning their transplant journey as well as those who have already received an organ transplant. It can be found at this link:  https://transplantliving.org/

Multiple listing is sometimes an option for patients waiting for an organ transplant.  Multiple listing is defined as being listed for an organ transplant at more than one transplant center. Current policy allows patients to be listed at more than one transplant center in one or more organ procurement organization. Multiple listing can be beneficial for different groups of transplant candidates.

Organ Procurement & Transplantation Network (OPTN) discusses multiple listing at the following link:  Frequently asked questions about multiple listing and waiting time transfer – OPTN (hrsa.gov) 

Many factors go into determining the amount of time spent on the transplant list, but the national average wait time for transplant is:

• Kidney – 5 years
• Liver – 11 months
• Heart – 4 months
• Lung – 4 months
• Pancreas – 2 years

This is a rather lengthy but very thorough video explaining organ donation and how to prepare for an organ transplant.  It is called “How and when will I receive my gift of life?”  https://youtu.be/zS0lpID7myE

As you can see, the process of being listed for an organ transplant is long and complicated. However, if you take the time to educate yourself about how it works, you may be able to improve your chances or lessen your wait time by selecting certain transplant centers or taking advantage of the multiple listing option.  At the very least, understanding the process may help to alleviate your anxiety and help you to be more prepared for the journey that lies ahead.