Angela
I completed the survey. I was seen only once at the transplant center following my donation. I support a model of data submission which allows donors and their own care providers to submit data. I have no interest in returning to the transplant center but would if this was the only route to at least get my data submitted within the 24 months as mandated ( just to clarify, I donated in 1994, there was no mandate.) Surgeons claim donors do not want to be followed in order to justify why so many of them mark us 'lost to followup' when they don't even try to find their donors.
This data submission requirement is already mandatory--has been since 1999 under the OPTN Final Rule. As donors, we are part of the OPTN data submission policy which includes all types of data including data about 'donors of organs'. The previous policy was for 12 months followuop but then was extended to 24 months (around 2007). When I was serving on the Board of OPTN/UNOS, a letter was sent to OPTN members by Joyce Somsak from HRSA reminding them of the mandatory data submission policy. This was over 5 years ago. A recent article noted that surgeons only want to do followup for 3 months. As surgeons, their only concern is for the 90 day global period yet we all know of donors who have had issues for much longer. For an honest and thorough consent process, potential donors should know not just about surgical risks but medical, financial and psychosocial since we are live donors.
Let us know your results. The call for accurate and honest short and long-term data is long overdue. We are at the point where the credibility of every surgeon and transplant center is at risk when they do not followup on their donors. Means they do not care. And without data, there is no proof of quality.