I described a little bit about the organ allocation process in this country in a previous post--certainly a frustrating system, especially in our case. What I haven't really described is how fun it is to go through the process of actually getting on a waiting list somewhere. Since Dad was lucky enough to go through this twice, I figured it may be a good idea to share a little bit of what it was like. Honestly, the list itself of everything that has to get done and considered was so long, that I felt it deserved it's own (long) post. This post is to go through the general process of what you need to make it onto a liver transplant list in this country.
First, you need a referral from your local GI. I mentioned this a little bit in the post explaining how Dad eventually wound-up in Indiana. This means that your specialist that has been helping manage your liver disease realizes that there are no other options to help at this point other than receiving a healthy, new liver. (Is it really new and healthy? That's a separate topic...) That's a very positive way to start the process, right?
I remember Dad telling me a few years ago that his colleague, also what we consider to be his local GI at this point, told him that he needs to start considering getting on the liver transplant list. That news was very tough to hear. This is the equivalent of the doctor saying: "Even though you cannot survive without a working liver, your liver is not recoverable anymore."
Welcome to the process of getting on the liver transplant waiting list!
Next, you need to select the center that you would like to be listed at. Most people, like Dad at his first pass, will choose a center near home. Depending on where you live, that could be a single option. In the Los Angeles area, there are a few to choose from, however the local GI felt UCLA was the best option.
Now you need to schedule the appointment for your pre-transplant evaluation. I use the singular form of appointment very loosely--scheduling the 'appointment' = clear your calendar for a full week once they can fit you in. In the case at Indiana, this meant Dad had to wait close to three months from the time he called to begin the evaluation process until the time his appointment was scheduled.
The evaluation is not a single visit to a single location to meet with a single doctor. This is a barrage of tests and consultations to determine if you are physically, emotionally, mentally, socially, and financially fit for something as big as a liver transplant. Sound invasive? As I mention above, the list is so long that I decided to make that a separate post. In any case, it's a list of items to check-off and many of them are incredibly invasive. All of them are required and Dad went through that process twice. When you complete all of these tests, however, you are not put onto the wait list. There are several more steps to this process!
Once you complete all of the various appointments, procedures, vaccinations, labs, x-rays, examinations, surgeries, scopes, scans, etc. you need to put together all of your history and all of the paperwork associated with your condition and make sure the evaluating center has everything. If you had a previous hospitalization (e.g. from a bleed and encephalopathic coma), you need to send those records over. If you had prior blood work done somewhere else, you need to send those over. Running around collecting all of that information is not trivial. It also doesn't help that a lot of these offices seem to misplace the information you send to them, meaning multiple iterations of sending the same information. We are still not ready to be listed yet, though.
You also have to submit all of your health insurance information and get clearance from your insurance for the transplant before you are considered for the waiting list. Yes, the hospital must know that you and/or your insurance company will be paying for this ridiculously expensive procedure. I don't blame them, however the insurance carrier is not particularly happy that you are requesting (or someone from the hospital on your behalf) approval for one of the most expensive procedures performed. This means they drag their feet waiting to make an official decision. This means waiting longer before even making the list.
Once all of the tests have been completed, forms signed, copies of records sent, and health insurance approval is complete you are now ready to be considered to be listed. Considered. Yes, only considered. There is actually a group of several professionals that you would have already met with during the evaluation process that make-up the selection committee. Kind of sounds like high school, but the people involved have very fancy degrees.
The selection committee periodically meets (in larger hospitals, this is most likely once a week) to discuss different patients. Each patient is presented to the selection committee once they complete the ridiculously long evaluation process to determine if they are listed officially at the hospital or not. After everything you go through, you can actually be denied access to the wait list and for a multitude of reasons, most of which have nothing to do with your liver disease or need for a liver transplant. Of course, in our case, Dad was first rejected when he was presented at UCLA, but we eventually were able to change his status there. Why would this process ever be smooth, fast, or simple?
Dad has now gone through this entire process twice to be listed at two different liver transplant centers in two very different parts of the county. The process of getting on both of those waiting lists was arduous and lengthy, yet it certainly would be worth it in the end if it means Dad gets a new liver. If only making the waiting list meant you get a new liver without any other obstacles in the way....
My mazel.
First, you need a referral from your local GI. I mentioned this a little bit in the post explaining how Dad eventually wound-up in Indiana. This means that your specialist that has been helping manage your liver disease realizes that there are no other options to help at this point other than receiving a healthy, new liver. (Is it really new and healthy? That's a separate topic...) That's a very positive way to start the process, right?
I remember Dad telling me a few years ago that his colleague, also what we consider to be his local GI at this point, told him that he needs to start considering getting on the liver transplant list. That news was very tough to hear. This is the equivalent of the doctor saying: "Even though you cannot survive without a working liver, your liver is not recoverable anymore."
Welcome to the process of getting on the liver transplant waiting list!
Now you need to schedule the appointment for your pre-transplant evaluation. I use the singular form of appointment very loosely--scheduling the 'appointment' = clear your calendar for a full week once they can fit you in. In the case at Indiana, this meant Dad had to wait close to three months from the time he called to begin the evaluation process until the time his appointment was scheduled.
The evaluation is not a single visit to a single location to meet with a single doctor. This is a barrage of tests and consultations to determine if you are physically, emotionally, mentally, socially, and financially fit for something as big as a liver transplant. Sound invasive? As I mention above, the list is so long that I decided to make that a separate post. In any case, it's a list of items to check-off and many of them are incredibly invasive. All of them are required and Dad went through that process twice. When you complete all of these tests, however, you are not put onto the wait list. There are several more steps to this process!
Once you complete all of the various appointments, procedures, vaccinations, labs, x-rays, examinations, surgeries, scopes, scans, etc. you need to put together all of your history and all of the paperwork associated with your condition and make sure the evaluating center has everything. If you had a previous hospitalization (e.g. from a bleed and encephalopathic coma), you need to send those records over. If you had prior blood work done somewhere else, you need to send those over. Running around collecting all of that information is not trivial. It also doesn't help that a lot of these offices seem to misplace the information you send to them, meaning multiple iterations of sending the same information. We are still not ready to be listed yet, though.
You also have to submit all of your health insurance information and get clearance from your insurance for the transplant before you are considered for the waiting list. Yes, the hospital must know that you and/or your insurance company will be paying for this ridiculously expensive procedure. I don't blame them, however the insurance carrier is not particularly happy that you are requesting (or someone from the hospital on your behalf) approval for one of the most expensive procedures performed. This means they drag their feet waiting to make an official decision. This means waiting longer before even making the list.
Once all of the tests have been completed, forms signed, copies of records sent, and health insurance approval is complete you are now ready to be considered to be listed. Considered. Yes, only considered. There is actually a group of several professionals that you would have already met with during the evaluation process that make-up the selection committee. Kind of sounds like high school, but the people involved have very fancy degrees.
The selection committee periodically meets (in larger hospitals, this is most likely once a week) to discuss different patients. Each patient is presented to the selection committee once they complete the ridiculously long evaluation process to determine if they are listed officially at the hospital or not. After everything you go through, you can actually be denied access to the wait list and for a multitude of reasons, most of which have nothing to do with your liver disease or need for a liver transplant. Of course, in our case, Dad was first rejected when he was presented at UCLA, but we eventually were able to change his status there. Why would this process ever be smooth, fast, or simple?
Dad has now gone through this entire process twice to be listed at two different liver transplant centers in two very different parts of the county. The process of getting on both of those waiting lists was arduous and lengthy, yet it certainly would be worth it in the end if it means Dad gets a new liver. If only making the waiting list meant you get a new liver without any other obstacles in the way....
My mazel.
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