We are down in Atlanta waiting for a transplant at Emory Hospital.  It could happen anytime or take weeks or longer.  To explain, let me back up.

 

I know it has been forever since I posted anything. The period from the spring of 2008 until now was busy personally but uneventful medically.  We had received no calls for transplant -- back-up or primary -- from MGH or from Cleveland.  It was both peaceful and unnerving after a total of ten calls the year before. 

 

Thanks to Princeton University Class of 1978 President Gwen Feder, who sent out a letter to Anne's and my classmates about my liver difficulties, we have connected with Dr. Stuart Knechtle (also a classmate!) of the Liver Program at Emory University.   We are hoping to go visit Emory in the next month or so to explore whether I can be listed there.   While exploring this facility, we discovered a remarkable video that they have prepared about liver donation.   We recommend it because it fits a lot of information into a relatively small amount of time.

I am trying to keep up with our promise to post new information more regularly, so here goes.  First of all, Anne and I were deeply touched that Gwen Feder, the new president of our college class (Princeton 1978), sent out a letter to the whole class asking for someone to consider liver donation.  We got back dozens of wonderful comments.   We know that some people looked into the possibility and discovered that they are the wrong blood type.  We don't quite know who has contacted the hospital.  Unfortunately at this point the number is apparently very small, i.e. people who are considering it and who are the right blood type.

 

Anne and I have been talking about things we want to do this year and high on our list is improving our online presence, particularly this website. 

I have had the experience of being on Facebook and discovering in a new way how large the internet community really is.  I also felt compelled during the election to hold forth on a wide variety of topics and I was pleased to see that people seemed to like what I had to say.

When we last checked in, we were assuming that the size and condition of Bob's spleen would make it difficult, if not impossible, for him to be the recipient of a living donor transplant.  So, most of this year,  we have been riding the ups and downs of waiting for an “extended criteria” (i.e. not perfect) liver or being back-up for a primary recipient.  

All together we have had ten calls since October.  Ten times Bob has been told to stand by and not to eat for as much as twelve hours until we were told to stand down.   Three times he went in to Mass General and once, as we wrote earlier, we almost flew to Cleveland.   Each time and situation was unique, as were the reasons the transplant did not work out.

One aspect of being on a transplant list is that everything changes in a few minutes.

We Become What We Believe
Bob Massie
Response to Boryana Dumyanova Award
Institute for Global Leadership, Tufts University
February 24, 2008

I want to express my deep gratitude to Sherman Teichman, Marcy Murninghan, Bruce Male, Hannah Flamm, and all the faculty and students here at Tufts. Thank all of you for coming. It is a deep honor and a balm to my soul to be the recipient of the Boryana Dumyanova Award.

From Bob on 2/17/08: