I am so sorry you are fighting this fight alone. If you haven't yet, I'd recommend a medical school hospital, especially one known to have a good transplant program (such as, but not limited to, University of Pennsylvania-Pittsburgh Hospital, University of Arizona Hospital). University hospitals are forerunners of innovative care, and have access to funds private hospitals and clinics do not.
I hope that this helps. This is why the Affordable Care Act is so critical to middle America; what kind of a system do we have where rich hollywood stars and politicians and corporate leaders can get a transplant, but a regular American cannot?