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.

With Bob's declining health this past winter, we re-opened the possibility of living donor transplantation at MGH. The physicians there felt that if Bob were to find a strong living donor candidate and if he underwent a preliminary procedure to reduce the size of his spleen, a successful living donor transplant would then be possible.

We went back to the list of people who had first stepped forward more than three years ago.   We do not know the names of many of the people who had explored the possibility, but one friend -– the extraordinary writer and environmental leader Bill McKibben -- had told us of his interest and the hospital had him at the top of their list.  We contacted him and his response was amazing, generous, immediate and, fortunately, persistent. On several occasions he let us know that the hospital was not getting back to him and we were able to shake the system into responsiveness.

Bill McKibben’s story follows:

      I'm writing to encourage others to consider exploring liver donation for Bob. I do it with some frustration--at the very end of a spring-long process, just as we were setting a date for the operation, the doctors did one final CT scan and decided the plumbing of my bile ducts would make it impossible for me to donate.
 
      That was very frustrating, because I'd reached the point of wanting very much to do it. There'd been some initial hesitancy, of course--anyone who didn't feel a little trepidation about a major operation is nuts. But it faded as I moved through the process.
 
     First comes making contact with the program at Mass General Hospital. It is important to note that you’ve got  take the initiative here and throughout the process.  There are all kinds of screwy ethical rules about them contacting you, so you need to approach them--you can do it through Bob and Anne or directly through Abigail Mithoefer in Dr. Raymond Chung’s office.   Even after that, they're a little understaffed, so it takes a while, but Susan Noska, the transplant nurse coordinator, is quite helpful once the process is underway. She'll send your local doctor a list of blood tests to assess your liver function--if they look good, you move on to the next part of the procedure.
 
    That involves going to MGH to be checked out. First, they want to make sure you understand all the risks -- you'll meet with a doctor who will be your independent patient advocate, with the surgeon who will do the operation, even with a friendly shrink who will make sure you really want to do this. You can back out at any point and they'll happily invent an excuse for you.
 
     If you want to proceed, you'll come back a few weeks later for more tests – CT scans of your liver and gall bladder, more blood tests, etc.  These take a couple of appointments, but they're not painful or invasive.
 
    And past this point I can't tell you, because that's where I washed out. Mostly, though, you'd just need to bank a couple of units of your own blood for the operation, and then show up the day before surgery. You'd be in the ICU for a day afterwards, and the hospital for a week, and need to come back at one month and three months for checkups, to make sure your liver was growing back as expected.
 
    Please feel free to contact me with questions. I've thought a good deal about the whole process, and can be reached at bill.mckibben@gmail.com

We were together at our home with Bill when MGH called him to say that he would not, after all, be suitable as a donor and we were deeply moved by his visible disappointment.  He had just been released from the possibility of a complicated and time-consuming surgery that would have happened in the middle of an amazingly busy year for him (see 350.org – a great new effort to save the planet) and all he could think about was letting us down.  We remain unimaginably grateful for his willingness and, as with each offer, we find our faith strengthened that this will work out eventually.

Without a donor at the top of the list or a clear plan for moving forward we requested and, somewhat surprisingly, received. a meeting at MGH with the whole transplant team managing Bob’s care.  This had never happened before and we believe it is a rare occurrence that the group which meets regularly to review the transplant “cases” would actually sit down together with a patient to discuss their recommendations. Commonly we meet with a single doctor and hear second-hand about the opinions of the others.

The mutually agreed-upon plan is to review possible donors through a new protocol for communications between prospective donors, us, and MGH.  

In short, several years after Margaret Bullit-Jonas’s letter, we still need an acceptable donor.  The medical criteria are straightforward.  The person must be healthy, have O+ or O- blood, and be no more than 55 years old.  In addition, the hospital does not wish to consider people without any direct personal, familial, or emotional connections to Bob.  Their experience has shown that completely unknown “good Samaritans” are less likely to complete the evaluation process.

We don’t know how many people meet these criteria or are willing to be considered.  To insure that the hospital receives and follows up on expressions of interest from friends or family we believe (and the hospital agrees) that it is preferable to let us know first.   We will then be able to direct people to MGH in the most efficient and responsive way and to keep track of how their generous offers are handled.

In the past we have heard that people have expressed interest and even made serious offers to donate but then met with a confusing silence or lack of response from the hospital.  The literature and the practice of living donation is full of Catch 22s.  The hospital has not wanted to contact people for fear that this will be seen as a subtle form of “coercion” of donors.  Potential donors naturally interpret silence from the hospital as a lack of interest from the doctors.   We have sometimes been caught in the middle (or, more accurately, left in the dark) as both doctors and patients have silently been waiting to hear from each other.  

We deeply apologize for any confusion this may have caused and we regret particularly that we have not expressed our appreciation to anyone who reached out to the hospital in the past.  Since the confidentiality shield was used so aggressively by the hospital, we mostly did not even know who had come forward.  

In the past, the hospital was not adequately prepared to handle donor inquiries in a timely and responsive way. and They have assured us – promised us -- that they have addressed those problems, whether the inquiries come through us or directly to them.  

In our recent meeting, we worked out a procedure that should avoid future confusion while respecting the concerns of all parties.  The rule of thumb, however, for potential donors should be just as Bill McKibben says (and did): if you are serious about considering this, you need to prepared to be persistent.   If you are not getting the information or the response you need, you need to let someone – the nurse coordinators and/or us, as you prefer – know.

We are hopeful that a surgery sometime in the next year will restore Bob’s energy and ability to work in a consistent and effective way.  The hardest part for Bob, harder than feeling terrible most of the time, is his inability to be out there working hard on the issues he feels so passionate about.  And there are many. And he continues to brew ideas and solutions even while he is exhausted and confined mostly to home.

I am taking a sabbatical this academic year to be better able to handle the medical and home fronts, and to work on an new project on the city and nature.

Katie just turned ten (“double digits!” she announces happily) and is flourishing.  John returns next week from a sojourn in Europe that included working for several demanding weeks in a vineyard in the Loire Valley, visiting family in Switzerland and friends in Paris. He has accomplished his goal of becoming fluent in French. Sam is in China for the second summer at Princeton in China, where he speaks nothing but Chinese for ten weeks as part of their fourth year level language program.  He traveled from Hong Kong to Beijing on his own, sending home rare and brief email messages. Both boys (young men, really) doubtless had many traveling adventures, some of which we look forward to hearing about. In the fall they return to Duke and Yale respectively.

Our challenge remains trying to move the Living Donor process forward while staying prepared for the unpredictable possibility of a traditional transplant and striving to live our daily lives productively and enjoyably. Thanks to so many great friends and supporters, we manage pretty well.

Anne