Amanda Nicastro is a writer and actor based in NYC. In 2014, her sister Brenna needed a new kidney. While Amanda wasn’t a match, she was able to find an exchange program that allowed her to donate a kidney for someone in need, and for Brenna to receive a kidney that met her body’s needs. While Amanda isn’t the most comfortable with the idea of being a “hero” — a title often bandied about in response to her “sacrifice” — she decided to use this overwhelmingly positive response to her actions to call attention to the importance of organ donation…while also hilariously sharing the ins and outs of the kidney donation journey (such as: carrying a cooler full of her own pee through the NYC subway). She wrote the award-winning solo show I’m Just Kidneying, which takes a whimsical look at the process of living kidney donation and “pokes holes into the idea of what it takes to be ‘hero material’.” The show has toured extensively in the US, and even recently at the Edinburgh Festival Fringe. As AM New York says, “She may have donated a kidney to a stranger, but Amanda Nicastro still has her funny bone.”
Key links mentioned in this episode:
Tune in as Amanda shares…
- that her sister was diagnosed with nephrotic syndrome (rediagnosed as FSGS, or focal segmental glomerulosclerosis) in 4th grade
- that her sister has now had 2 kidney transplants, and her body has essentially reabsorbed her failing kidneys
- that a transplant can theoretically put FSGS into remission
- that Brenna’s first kidney transplant was donated by her Dad
- that Amanda was able to donate a kidney to a stranger’s wife, and the stranger was able to donate his kidney to Brenna — all through a living kidney donation exchange program
- that it was very hard for her when she discovered she wasn’t a match for Brenna; but that the donation has ultimately made them much closer
- that she has become an advocate since making a living organ donation
- that she recognizes her sister as the real “hero” in their story
- that in the US, someone is added to the organ donor waitlist every 10 minutes
- that she now speaks to her representatives in favor of organ donation and protective legislation for patients
- that support for organ donation legislation is bipartisan, so the foundation for support of patients and donors exists
- that there are limitations to provisions for organ recipients within Medicare and Medicaid, as well as through various health insurance contracts
- that not all transplant centers are created equal, and there is a need for standardization of care in these centers
- how systematic racism plays into access to medical information and treatment
This episode is sponsored by Embr Labs, creators of the Embr Wave.
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