In the huge package of paperwork for the transplant team was a 40 page booklet about what to expect. Some of it we had already seen, some I knew because of my work.
But I still have not been able to get past the 15 pages entitled "Financial Planning." Apparently this whole deal could run $100,000/year for dialysis. Her current meds top $700/month (mostly covered). The transplant year could be half a million. Oh. My. I made notes, and, with a grim sense of "Holy Crap," I made a some phone calls.
The first one was to our insurance company. Here's the list of questions and answers:
1) Does our policy pay for kidney transplantation? (Because if not, we're screwed, totally screwed.)
Yes, it does - but nothing experimental.
2) Is there a lifetime cap on payments for dialysis, transplant and meds?
No. Thank you God - there is no cap. So we're good until she isn't a student.
3) Does it pay to harvest a kidney from a living donor (about $90K on average!)?
Yes. But.......
The "but" is a big one. We are not covered to screen potential living donors to see if they match. They can donate a pint of blood for free blood typing (and preliminary HIV/hepatitis screening). After that it's on us - tissue typing? Probably $500/person. Match? Move on. Screen for kidney function, presence of both kidneys, kidney anatomy, general health and psychiatric evaluation. This could, I imagine, add up to $10K/person. Right now I have several on my list. Living donors are covered on out policy from 5 days prior to hospitalization to 3 months after. It doesn't include travel, income loss, or ongoing disability. And we aren't permitted to contribute much to that. There are limits (although I confess I do not yet know what they are) and we must not appear to be "buying" a kidney.
Next was a call to Social Security to get a Medicare application. Turns out that once you start dialysis or get a kidney transplant, you qualify for Medicare coverage, which will cover 80% of the costs. They wouldn't let us apply yet (and the woman on the phone was actually unaware that this exception to usual Medicare guidelines even existed!) because we are neither of those things yet, so I have no way of knowing yet whether this would offer us additional coverage on the donor screening issue. We are over income for her to qualify for SSI (disability payments, which are for poorer families to use to help defray non-medical costs of disabities - ramps, travel, income loss,and so on).
By the time we meet the transplant team in July, I'm supposed to have a plan for paying for everything.
It just keeps getting better and better!
DeeDee
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