Hi @shelly63 I agree with @jodeej, that is a scary situation, and I think Jodee has some good thoughts about it.
Do you have insurance that will cover a transplant if you do become a transplant candidate? I've never heard of having to give the transplant center money upfront to be listed. I do know they check your resources to see if a transplant would be paid for, it's very costly, as are the post-transplant drugs.
I am surprised that disability would be denied to a person of any age if they have a disability. I don't understand that. Are your disabilities due to the blood syndrome, and do they disable you to a point where you could not be employed in any type of job? I hope you find a solution to your dilemma.