People with my daughter's disease frequently have to recruit living donors as the only alternative to dying on the waiting list. For her disease (Primary Sclerosing Cholangitis) it is a combination of the disease staging not being measured well by the transplant criteria (so they are far sicker before they are eligible to be listed), and too few livers available.
We have friends with the same disease who have needed as many as 5 transplants (it's an autoimmune disease which doesn't vanish when the liver is replaced). We have friends who have died on the waiting list. We have friends who have recruited living donors. I'm aged out of the living donor process, but I did start the evaluation process for a friend of ours since my daughter seems to be on the slow track, so it was clear I would not be eligible to donate to her when she needed it.
There is no medical treatment. The only possibility for a normal life is a transplant. My daughter is 35, but I've known people as young as 4 diagnosed with this disease. Even if she doesn't need a liver transplant, her disease puts her at increased risk for a half dozen cancers. She has a colonoscopy every year (and has had since she was 18), an MRI every year, and on the alternate 6 months an ultrasound with the hope of catching any cancer which develops early.
I hope you'll rethink your decision. You can't take your organs with you - but they can give life, or quality of life, to dozens of others.
If your concern is that doctors will give up on you in order to harvest organs for others, (1) the process has safeguards to prevent that and (2) you can craft your living will/advance directives to specify exactly how you want your end of life structure in order to provide extra safeguards. Depending on what you specify, it might mean that some of your organs could not be used based on your directions - BUT - it is far more likely that your organs would go where they are needed if you are on the registry AND have a living will/advanced directive that limits the gift than if you just aren't on the registry.
Next best would be to make sure your close family members know our wishes.
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