Follow-Up OPTN

Living Donors Lost to Follow-up 2008-2009

Back in July, I talked about OPTN’s data on living donors from January 2008 – March 2009. Specifically, I outlined the reported* complication and re-hospitalization rates. Buried in the midst of all that info, I also reported:

However, not all living donors were reported to UNOS at the six-week, six-month and 12-month mark. 134 were lost by the six-week mark, another 884 by six-months, and an additional 3060 by one-year.

7481 people became living donors in those 15 months.

1.8% were lost by six-weeks.

11.9% disappeared by six months.

And by one-year, 41% were ‘unknown/unreported’.

I’ll let Mandelbrot (2009) take it from here:

In general, U.S. transplant programs are not responding to [the] call for widespread and prolonged follow-up of living kidney donors, nor are they satisfying [OPTN] goals for specific information postdonation…Arguments that donor follow-up would benefit donors themselves, as well as contribute to the knowledge base of the field, do not seem to be commonly accepted.

One reply on “Living Donors Lost to Follow-up 2008-2009”

i was a non-directed donor last december…i was the beginning of a donor chain. despite being an r.n. and assuming i was well prepared for the experience, i was floored by the amount of discomfort i experienced as well as by the casual attitude of the transplant team. at my 2 week check, i had to insist on a urinalysis and blood count. in my chart the doctor wrote that i had a "myriad of diffuse complaints"! for my 6 month follow-up, i was told to see my own doctor.
my b/p and lab values are okay, but the team would not know that as they haven't contacted me in several months. i was disappointed in my care at the hospital and my follow-up. i continue to have numbness in my forearm and in an area around my incision. i received a wonderful card from my recipient saying she was now free of 3 times/week dialysis which she had been on for 4 1/2 years. that is what sustains me when i reflect upon my experience. thanks for listening…

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