The wild ride

David received an offer today of a heart from a high risk donor. We were completely blind-sided by this -- no one from the transplant team had mentioned the possibility that the heart might come with a warning. A "high-risk donor heart" is one from a donor that the CDC would classify as engaging in behaviors (like IV drug use, prostitution, risky sex, was incarcerated, etc.) that create a high risk of being infected with HIV, Hepatitis B, or Hepatitis C. The donor had been tested and did not seem to be carrying these diseases, but there was no way to be absolutely sure. David was told that he could say no to the heart and not lose his place on the list, but that his doctors were recommending that he go ahead and accept the heart. There was no information available as to the historical data on outcomes with high-risk donor hearts, nor about how infections were handled in the post-transplant phase if an infection were found.

David was given ten minutes to give his consent to receive this heart or to say no and wait for another heart. We spoke on the phone while I was driving from Julia's OT sesion. My gut reaction was to say no, but it was an agonizing decision. The doctors were recommending it, but so little about it made sense. It was a high risk organ from a high risk donor, but they were telling us that the risks were really very low. Which was it? And what if that organ had been infected? How would the anti-rejection drugs have affected the infection?

We said no to the heart. Yet I feel that we might have said yes if we'd received more complete information about this possibility ahead of time. Afterwards, I spoke to my sister and left messages on a few appropriate message boards. No one disagreed with our decision, but those who had been through the experience suggested that the making a quick decision without adequate information is part of the process.

During the Ukrainian mass, there is a prayer that begins, “Wisdom, wisdom!” Request? Demand? Prayer? Desperate hope? All of the above?