Soon after I woke up from a coma in 2021 I was told I needed to get on a liver transplant list. When I was originally in Stanford, they were treating me with oral drugs and food. Needing a new anything wasn't brought up. Whatever happened subsequently, my body was clearly in much worse shape and it seemed the primary treatment was to get a transplant as soon as possible.
There are a lot of hoops to jump through to get on the liver transplant list for a hospital. There are a limited number or organs available and it is not guaranteed that you will be listed _at all_. The hospital can choose whether to list you: the hospital is agreeing that if an organ is available they will do the procedure. And if you seem a high risk of failure (but are not in imminent death) they can defer or even reject you. Given that it seems you will die without a transplant, this is a lot of power being wielded over you.
Hospital are different and the availabiity of organs is different based on UNOS regions. This is just my experience with Stanford in California.
Before going into the process, you should know you _may not_ need a transplant to stay alive. At least I did not, although I never recovered enough that a transplant wouldn't help. But other did not get a transplant and recovered so much they never needed it: it was no longer a good treatment of remaining symptoms.
This isn't to discourage you from doing what is needed to get on the transplant list: all the hoops will likely help you to get in better health. But just to possibly temper that 'I will die' aspect anytime something foils you from getting on the list. It can be stressful but ideally isn't overwhelmingly depressing.
There are several aspects to getting on the transplant list at Stanford, which are likely similar to what is require at other hospital. Note that the requirements within these aspects is from a patient perspective: for many things I am guessing on the details based on my own interactions and annecdotes from other patients. A lot of the true details are opaquely hidden behind a ‹Review Panel› (or what I call the ‹Panel of Gods›).
The aspects fall into the categories
When I went from taking pills to possibly getting a transplant, I went from having a significant number of blood and other tests done to me to having a battery of procedures that needed to be performed. These included:
The goal of the physical review is to figure out what state you are in regarding:
A major aspect from this is treating symptoms that can improve your health either independently of the transplant or to handle the transplant. An example I did not have, but is discussed quite regularly in support groups, is liver-related cancers. If these can be controlled, you improve both your current health and your success rate for getting a transplant. An example I did have was getting into better physical shape (e.g. improvements to cardiovascular capacity) so I could better handle a transplant.
The psychiatric review is one of the more nerve-wracking aspects of being evaluated. The physical review is purely factual and independent of your ego: you can't mentally change what an X-Ray looks like. Psychiatric review involves people questioning your historical behavior, your current state of mind, and your behavior going forward. The amount of disclosure required for this can be very difficult for some patients. There are also a few especially touchy areas: chemical abuse, psychiatric conditions like severe depression, and physical care.
I believe you can talk honestly about all of these issues if you are willing to do the work to address them sufficiently. Note that this impression is "I believe" based on my interactions with my reviewers, which ultimately worked out. Different programs or patients could have very different experiences.
By the time I was considered for the list, I had been completely sober for about six months. If I hadn't been, I believe they would have required a subsequent period of six months with maybe sporadic PEth testing.
Beyond being sober for at least six months, Stanford required proof that I would continue to be sober. See Proving Sober for some of the details around that continued proof.
I believe the critical aspect of reviewing a patient's psychiatric condition is to:
Where chemical abuse has a bit of a stigma (given chemical usage may have helped cause the condition), other psychiatric conditions simply need to be understood well enough that the patient is stable both before and after the transplant.
I believe there is some amount of review of whether a patient has a healthy diet, weight, exercise, dental care, etc. You need to be in as good a shape as possible before transplant and need to have habits that will help you get back in reasonable shape after the transplant so the outcome is as good as possible. I am not sure if this impacts being on the list, but may factor in somehow.
The better the support environment around a patient, the better able they are to deal with the physical, occupational, and mental hardship of the transplant. I don't believe you can be excluded from the transplant list based on missing family support, but Stanford definitely strongly encourage both you and any available family to commit to leveraging and providing that support. In my case, family members were contracted to provide aid and I was contracted to accept that aid (even against my will).
One of the more subtle or covert aspects of listing review is patient compliance. The more a patient actively refuses to comply with medical team requests, the lower their chance of getting listed. Or I believe this is the case.
If you need to be cajoled it is probably a lesser penalty. Asking for explanations or alternative possibilities should not be penalized at all. Just realize you may never really understand why something is required of you. The more they have to convince you the less compliant you are being.
Somewhat like the army, if you are asked to "Jump", the ideal response is "How High?" or just to jump however high you can.
Getting on the list goes through multiple stages. Ultimately there are four possible major states:
In my case, I was deferred multiple times. Being deferred is very disheartening, but each time it is with an explanation of what else needs to be done. In some cases it may just be a test is still remaining or you need to find a community psychiatrist still.
