This patient support community is for discussions relating to transplants, anti-rejection drugs, financial and insurance issues, long-term issues, organ rejection, pre- and post-surgery, and waiting list issues.
How long does it typically take to hear back about being on a transplant wait list?
Family member is 70, type II diabetic, end-stage cirrhosis, kidneys have begun to fail due to liver. Liver failure began in 2009 (not sick enough for transplant). Second referral was sent from ER doctor in November 2011, and met with transplant clinic in December. They referred for additional tests in January (bone density, lung function, etc.) then required an angiogram due to previous heart history. Angiogram was the last test and was completed in February. We still haven't heard back. Is it normal for this process to take this long? I get mixed opinions about whether or not my family member is now too sick for a transplant but what's clear from all doctors is that they need it now.
I've called the transplant team three times since the last result were sent, don't get calls returned. I requested first available spots for all tests and informed the doctors that these results were needed to determine suitability for transplant. The hepatologist here resent them the last test results to ensure it made it there. Any doctor I speak to defers to the transplant team as the one who makes the call. I am told the risk is high, however none will clearly answer whether it's too high. My concern is primarily regarding the length of time it's taking to hear back and for them to make this determination. Tips on what else I should do would be appreciated. What I really want to know is regarding the process. The initial contact was made 4 months ago. Is this a normal length of time to still be waiting for an answer? Should it not be faster? What can I do to be more proactive?
One thing you need to understand is that your family member is not the only person being considered by the transplant team. Usually once all of the information is gathered the transplant team will meet; this team consists of several different members, not just the doctors. They usually meet once a month and go through all of the files in front of them. As soon as they make a decision, they will contact you and let you know what that decision is. From then on, they become the treating doctor, that is one reason you are always being referred back to them. Transplant medicine is a whole different story compared to regular medicine and for many things is still in it's infancy stage.
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