Are You Really Listed On The Kidney Transplant Waiting List Or Do You Just Think You Are?

"After getting tested for the Kidney Transplant Waiting List, how are you notified of whether or not you were selected? I have not received any communication from the Transplant Center. Do you get some sort of letter or firm acknowledgement that you have successfully been added to the list?," a viewer recently wrote. 

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You probably know by now that the road for Chronic Kidney Disease patients to get a Kidney Transplant is a long one which begins with their Nephrologists and extensive testing. Afterward, your case is presented to a multi-disciplinary selection meeting where Surgeons, Nephrologists, Nurses, Financial Coordinators, Social Workers, and Nutritionists decide either to place you on the  waiting list or deny your request. But, how are you notified?

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What you may be unaware of is as of late 2013, a total of over 100,000 patients were registered on the Kidney Transplant Waiting List at the United Network for Organ Sharing (UNOS) in the United States which manages the national waiting list and matches donors to recipients. However, you should note that UNOS will NOT notify you when you have been added to the Kidney Transplant Waiting List. Instead your Transplant Hospital will notify you within 10 days to inform you about your date of listing. 

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Over 30 % of the list is registered in an "inactive" status at any given point in time. This can occur if you develop a condition that makes transplantation temporarily inadvisable (weight gain, infection, skipping treatments, etc.). If you become inactive you will receive a formal letter from your Transplant Center as well as one when you become active on the list again. 

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Although, some have noted that centers call as well as send a letter, you should be sure to keep a current address, ensure that you receive your letters as expected, and keep a file with all relevant pieces of correspondence. Why? Well, should there be any confusion with your Transplant Center, you will have all the relevant information pertaining to your listing status on-hand. This in turn, serves as an insurance for you and gives you a clear idea of your standing on the Kidney Transplant Waiting List. 

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If you are approved, you will be expected to maintain an ongoing schedule of appointments designed to keep you in the best possible health during your wait so make note of appointments and do your very best to keep them. What's more, if your initial Transplant Center declines to add you to the list, you have some options. At some centers, you can appeal the decision and attempt to have the team reconsider. You can also be evaluated at a different Transplant Center that may have different criteria for selecting candidates. 

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If you have questions about your current status on the list, ask the team at your Transplant Hospital sooner rather than later. Also, visit KidneyBuzz.com every day for the most up-to-date news and information about Chronic Kidney Disease and Diabetes. 

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References:

"Organ Transplant Waiting List Requirements." About.com Surgery.

"The Kidney Transplant Waiting List." Http://www.uptodate.com/. UpToDate, Inc.

"Waiting For a Transplant." Http://www.kidney.org. National Kidney Foundation, Inc.

"Waiting List." Http://intermountainhealthcare.org. Intermountain Medical Center.