I am asking all past donors and those pending to review what you were told regarding being given an allocation priority if ever needed a transplant? What did you understand this meant for you?
The recent changes to the deceased donor allocation policy prompted me to do a little research on the history of the "4 points" donors are given. In the proposal was mention of the allocation priority only being at the local leel. Never heard this before and still cannot find the original 1996 policy. What I found is that while being a previous living donor should give us 'preferred status' if should need an organ, it means nothing. At a 2004 ACOT meeting, Dr. Robert Merion (U of MI) confirmed this when stated the 4 points means nothing in many donation service areas.
The current OPTN policy giving donors priority is part of the 'allocation of deceased donor kidneys' stuff. Here is what it says:
Priority on the Waitlist. A candidate will be assigned 4 points if he or she has donated for transplantation within the United States his or her vital organ or a segment of a vital organ (i.e., kidney, liver segment, lung segment, partial pancreas, small bowel segment). To be assigned 4 points for donation status under Policy 3.5.11.6, the candidate's physician must provide the name of the recipient of the donated organ or organ segment, the recipient's transplant facility and the date of transplant of the donated organ or organ
segment, in addition to all other candidate information required to be submitted under policy. Additionally, at the local level of organ distribution only, candidates assigned 4 points for donation status shall be given first priority for kidneys that are not shared mandatorily for 0 HLA mismatching, or for renal/non-renal organ allocation irrespective of the number of points assigned to the candidate relative to other candidates. When multiple transplant candidates assigned 4 points for donation status are eligible for organ offers under this policy, organs shall be allocated for these candidates according to length of time waiting. (OPTN Policy 3.5.11.6 Published November 9, 2010)
What this means to us: where you live will determine how long you wait. 4 points gives us 4 years of credit on the wait list which in areas like LA, Boston, NY, Chicago and even Cleveland means nothing. If you live in a donation service area (DSA) with long wait times, you will wait years. What if I donated in a DSA with short wait time? Why not get a priority there? My belief is that we were mislead to think that we had a national allocation priority up there with children and perfect HLA matches. Some donors have been told they will automatically be #1 if need a transplant? If you are one of these--who told you this? Surgeon, coordinator, social worker? Just because someone works in the industry does not mean they know OPTN policy. If they did, they would be 100% compliant in donor followup data submission which has been a mandatory policy for 10 years.
Next: I would like to take on the notion that living organ donors are 'fully informed'. Suggest you get a copy of your donation medical records including the entire operative report (Anesthesia records, too). The transplant community claims that living donation is only ethical in the setting that donors are fully informed. Since we are not, living donation in the U.S. has never been ethical. I was never told my left adrenal gland would be sacrificed along with the kidney procurement; that I would be given Heparin, Mannitol, Lasix and 5 Liters of IV fluid intraop; and not told that my diaphragm would need 'reconstructed' since it was destructed with the removal of my 11th rib causing a pneumothorax. I donated in 1994--finally read my donation records just this week. Granted mine was an open lap but the surgery is essentially the same when comes to procuring the kidney. There are risks with the lap not seen with the open--if a lap donor might want to read about your procedure in the Gruessner and Benedetti textbook. Were you fully informed. How much did the 5000 Units of IV Heparin given live liver donors contribute to the death of the man at the Lahey Clinic last spring? No wonder I did not feel afraid for my surgery. I had no clue what they were doing when I was asleep.