Sessions about transplants at ASN

[Joy Lewis O'Brien]

Saturday afternoon I went to a session on transplants that covered a couple of topics of interest to this community, specifically the advantages of national kidney registry chains (instead of paired swaps) and special interests in pediatric transplants.

On the first topic, National Kidney Registries is a non-profit organization started by a father (Garet Hill) searching for a kidney donor for his daughter. He and his relatives were not compatible, and the wait time for a donated kidney was months to years, which was detrimental to her health as she was on regular dialysis. He started an organization in 2007 that facilitates chain donations, in which a good Samaritan donor begins the chain by donating to a recipient, and that recipient's donor (in this case, the father) donates to someone who matches his kidneys, and that recipient's donor donates to someone else, and so on. This ends up decreasing the wait time to a much smaller time frame because kidney recipients/donors don't have to find another recipient/donor pair that are their exact match. You can find more information at their website. Ideally we'd love to save as many kidneys as possible with early intervention in the acute phase of aHUS, but for kidneys that are badly damaged, transplantation is still the best option, and this can speed up the wait time considerably. Currently this organization operates through a string of participating hospitals, so a patient may have to be treated at one of the participating hospitals.

On the second topic, Dr. Elizabeth Ingulli, a pediatric nephrology transplant surgeon at Rady Children's Hospital in San Diego, spoke about graft loss in adolescents. She showed graphs that demonstrate that regardless of the age of transplantation, graft loss often occurs in adolescence as kids become unwilling to take their anti-rejection medication. She is creating a many tiered approach to talking with kids beginning around age 10 in order to transition some of the loci of control to them instead of their parents, so that they are better equipped to manage their health as they move into adolescence and adulthood. This means making a child responsible for knowing his or her
own health history, and understanding their disease process so they understand the risks of losing a kidney. It also includes talking with the kids about what their medications do, and topics such as
independence (friendships, sports, school, jobs), sexual health and intimate relationships, and how to navigate the health system as far as maintaining their records, managing referrals, and being their own advocate. We've all read Jessica's stories about her transition from pediatric dialysis to adult dialysis and she's been a good advocate for herself, but other kids might expect their providers to know everything that there is to be known about them as patients. In her trial, which still needs more long-term data, her interventions beginning before adolescence have yielded good results with none of the kids--now adults--in her study group losing their grafts or stopping their medications.