I have been accepted as a donor (nondirected) and the transplant team is hoping to have a chain of 3-6. I will be going to another state for the procedure (used to live there) and best friends still live there. They will be helping me post op, etc. I will also have a local friend come with me as well. This will involve airflights, etc. Lodging will probably be at friends but may not be enough space for everyone. I already traveled once there for several days of testing (and it was out of my own pocket). Altho I can pay for the needed expenses, it will not be as easy as initially thought since I have been "hit" with several unexpected, major expenses and there are many smaller expenses incurred with donation that add up.
OK, here is the "rant" part. I called the National Living Donor Assistance Center and was asked who the recipient was. I said I did not know and would not know b/c of being a nondirected donor. I was told that financial assistance is based on the recipients income, not mine. This makes no sense to me at all. I was told that the program would apply on my behalf, once the direct recipient is known to them. I was informed that if the recipients income is above a certain amount, then it is expected that the recipient could afford to help defray some of my expenses. This is ludicrous. I don't know this person and v.v. and if this person (or "household") had an income that disqualified me from getting some help, how realistic is it that somehow I am going to ask this recipient for financial help?? I don't know who this person is and am not allowed to know until "later" (some time post surgery). And if there was some way to "ask", how uncomfortable a situation is that? I feel it would be like a subtle form of "financial aid extortion". Even if the transplant program staff act as the liason, the same discomforts and concerns apply.
I am angry at this policy, even if I did not need it at all. I actually would fall under the guidelines for assistance if it were based on my income. It just does not make sense and it seems that the particular circumstances and ramifications of the nondirected donor have not really been carefully considered. There is such a need for more nondirected donors, but additional roadblocks for getting some financial help to offset the higher than expected costs of the entire donation process, does no favors to facilitating more nondirected donors.