Last Saturday I drove to Modesto to be trained as a Donate Life Ambassador for the California Transplant Donor Network (CTDN). As such, I have the opportunity to provide community outreach to DMV's , High Schools and Medical Facilities to encourage people to choose to be a donor when they get a drivers license or register online at the CTDN Website . It was very interesting for me considering that the majority of the other trainees present were families that had chosen to support their deceased loved ones wishes by donating their organs and tissues to other people. For them, from five to ten people benefited from this gift made during such a traumatic moment. I her multiple stories of the pain that they suffered from the loss of a son, daughter or husband, (they were all women.) And yet, they all felt a great sense of goodness as they talked of those who live and live better as a result of these shared organs. The woman to my left, Michelle, has become friends with the family of the man that has her husband's liver. Not all have had contact with their recipients or donors. The need to respect privacy is important and everyone grieves differently. I am fortunate to have written letter correspondence with my donor family. I was so grateful to hear the process from their perspective. We all learned some very interesting things; such as the true definition of brain death, or brain stem death. For an organ to be donated there must be brain stem death before the heart stops pumping. The patient is no longer alive, however, the heart only continues pumping because the mechanical ventilator continues to provide oxygen to the heart. Hearts pump independently of the brain if you give them food and oxygen. Mine does. I went to a picnic that night and asked everyone I saw, are you a donor? The two high school students were but most of the older adults were not. I was surprised. Most reported some myth to justify their response. I realized that it is important to share my story and educate, dispel myths and save lives. There were two other women at the meeting that were liver transplant recipients. There was much interest for others to hear what it was like to be a recipient. They marveled at our courage, interestingly, we didn't feel courageous, we felt that without the transplant, we would not live. It wasn't a tough choice, if it was a choice at all.
Sometimes I say I am lucky, sometimes I say I am blessed, I just feel so grateful and humbled to wonder at why I have been so blessed. I have seen too many amyloidosis patients die too soon. This saddens me. I want to support organ donation, and more specifically, that more heart transplant centers consider amyloidosis patients for heart transplants. I know there are many out there that can be saved if their local center would consider them as candidates. How long do I have to live to justify getting a heart, a second life? Just one more day sounds poetic; but surgeons aren't poets. The actual number has been calculated to be 3 years 2 weeks 4 days and 13 minutes, ( +/- 2.5 years).