A KidneyBuzz.com viewer sent an email that read, "I am on the Kidney Transplant Waiting List and have been waiting for two years. I was under the impression that I would have received a call two months ago, but nothing. I am becoming frustrated and depressed. Is there anything that I can do?"
The above question highlights how complex the Kidney Transplant Waiting List is. Some patients suggest that they are at the "top of the list" or that they will receive a Kidney Transplant in a "month or two." Yet, this is not the case. If a patient is fortunate enough to be placed on the Kidney Transplant List, there is no way for anyone to know their position, number, or when they will receive a call. The following are insightful tips that will help patients better understand the Kidney Transplant Waiting List, Rule Changes, and ways to improve their chances of getting off of the list and receiving a Kidney Transplant.
How do they choose who gets a kidney next?: Most Chronic Kidney Disease and Dialysis patients know that the United Network for Organ Sharing (UNOS) is a government contracted agency that manages the list of all the people across the country waiting for a Kidney Transplant. UNOS maintains a centralized computer network and uses a complex matching system to determine the best-suited recipient for available kidneys. Basically, the computer system matches the ideal person to the available kidney to avoid any human bias or tampering. This is why no one knows their number or position on the list. Also, rule changes such as time on Dialysis counting as time on the list, and younger patients receiving higher quality kidneys have made it very difficult to determine when someone may be close to being selected.
Is transplant the best option for patients with Chronic Kidney Disease?: According to the National Kidney Foundation, "For the majority of patients, transplantation is the best option." This is because a Kidney Transplant helps an eligible patient lead a longer life on average, with a better quality of life and more freedom. However, many patients choose not to get a Kidney Transplant because of large medication regimens, side effects of immunosuppressant drugs, and ineligibility.
How do I get on the Kidney Transplant Waiting List?: Just start by asking your Nephrologist who will offer a referral to a local Transplant Center. If you find it difficult to connect with your Nephrologist (maybe it is time for a new primary Nephrologist) then contact a Transplant Center in your area. You can Google Search, "Transplant Centers Near (Insert The Name Of Your City)." There will be an evaluation process that you are asked to complete. After evaluation, you will be sent a letter of approval or rejection. If you are rejected, try to get evaluated at another nearby Transplant Center or you can appeal the decision (email firstname.lastname@example.org for more information about the appeal process).
What is the average wait time for a Kidney Transplant?: In general, the average time for a Deceased (Dead) Kidney Donor is often more than 5 years, according to Living Kidney Donor Network. Other organizations suggest a 5 to 7 year national average. It could be even longer in some geographical regions of the United States such as Los Angeles and New York. You should ask your Transplant Center to get a better understanding of your expected wait time.
How do I know my status on the Kidney Transplant Waiting List?: While you will be notified if you are placed on the inactive list, there is no way for you to tell when you will get a call. The fact is, no one really knows. Selection is done by computer algorithms and not by Healthcare Professionals.
What would prevent me or disqualify me from receiving a transplant? Does my age matter?: Each Kidney Transplant Center sets its own guidelines for transplants. For instance, some Transplant Centers may have restrictions or rules around age. However, the major disqualifying factors include: Obesity (being overweight), Smoking, Serious heart disease, Recreational drug use, and Not being healthy enough to survive an operation.
Can I outreach for a Living Kidney Donor?: Yes! One of the biggest myths for patients is that they have to wait on the list and cannot ask for help. Not true. Since nearly 5,000 patients on the Kidney Transplant Waiting List are dying every year, a growing number of Transplant Centers are encouraging individuals to actively outreach for a possible selfless Living Kidney Donor match. While Deceased Donor Transplants are decreasing, Living Kidney Donor Transplants are on the rise. Feel free to request help from the KidneyBuzz.com Social Media Team who has assisted over one-hundred-and-fifty patients in finding their match and getting back to "normal" lives (click here).
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