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 

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

To back up a bit, Bob had a rough time in March. He was hospitalized briefly with pancreatitis (an inflammation of the pancreas) which I have to say seemed utterly unfair, to hear from a different organ causing trouble. We went into the hospital ER, endured the difficulties of being swarmed by many doctors and tests, then came home after 9 hours because there were no beds available at the hospital for at least another 12 hours (meaning that Bob would have spent the night in an emergency bay, or, more likely, the hallway), After 36 hours we returned to Mass General for admission because Bob was having some real pain that had to be addressed. Pancreatitis is treated with IV fluids, pain medication, and intestinal rest (i.e. no food or drink for a few days!)

When Bob was finally admitted to a bed, he was greeted by a young doctor who is an old family friend who served as his resident for 48 hours. She did a great job of caring for him, and he saw the usual cross-section of specialists, etc. A particularly charming group of medical students even came in, under the guidance of two avuncular and solicitous professors. They each examined Bob in order to learn from his peculiar mix of conditions and symptoms.

In spite of the good care from the physicians and from most of the nurses, Bob said that after 48 hours of dealing with complications, shift changes, disruptions, and noisy technology he found it almost impossible to rest. He was about to start organizing the patients to compile ideas and advocate for better conditions. He respects MGH but can’t believe there are so many little things that would be easy to fix and that would help patients – who are already feeling sick and vulnerable – feel stronger, more rested, and able to heal.

Many changes would be easy and cheap! Bob wonders if anyone in a position of real power – such as the board of directors or any of the division heads – has ever experienced a night as a patient in a two bed hospital room – if they had, these changes could take place within two weeks. I knew Bob was starting to improve when I heard that he was applying his mind – including his business school training – to diagnosing how a system with so many superb people with the best of intentions could end up exposing patients to so many unnecessary discomforts.

(Indeed, he and I are thinking about organizing a design studio on the “perfect hospital room” that met everyone’s needs – physicians, nurses, families, other employees and patients. What would the superbly healing quiet, peaceful hospital room of the 22nd century look like, a hundred years from now? So many current problems in hospitals today are the result of a lack of mindfulness in design and execution, the pressures of too little time, the huge complexities of institutional life. Everyone is aware of this, but no one feels empowered to act.)

When Bob returned from the hospital he had a bad bleed in his left leg for two weeks – an unusual and extended period for such a problem. It was difficult, painful and stressful for all – an enduring consequence of when he broke his leg in May 2006. It is troubling that it continues to hurt or swell almost any time he puts weight on it for more than a few minutes.

There were some hard days and hard nights for all of us. But as spring began to show up, with a little more sunshine, he seemed to be on the mend. We recognized that we needed more help at home and we brought in a great friend, Laurie Rofinot, to be with Bob when I have to be at work, in case he has a particularly hard day or needs special care. And, trying to anticipate what my students might need, I asked another friend to help me with my studio at RISD so that I would have more flexibility, especially if something sudden were to arise.

Then came Tuesday of last week. I was in the middle of a long day at RISD, seeing students, and Bob was at home, waiting for Kate to return from school. Laurie had left for the day. It was a sunny day, and he had just had a haircut. While he was out, he had heard the ferocious roar of fighter jets passing low over head – just as we had heard at the time of our first near-miss at the hospital last October. Then they were buzzing Fenway for the opening of the World Series; on Tuesday they came by to honor Opening Day. Bob is wondering if he could persuade the Air Force to make regular passes over Somerville to move this process along.

He was sitting quietly at his desk when the phone rang. He picked it up; it was the transplant coordinator from Cleveland Clinic. The transplant coordinator said “Mr. Massie, we have a liver for you. You have 15 minutes to decide if you want to accept this offer, and then we’ll send a plane to get you”.

Yikes!

He called me at RISD. (Thank God for cell phones) We each called one of his doctors and we decided, after weighing some of the medical complexities, to accept. I immediately ran out of school, jumped in the car and hurried (carefully and legally) back to Boston. I called home and asked Kate (just back from school) and our upstairs tenant Crystal to pack a bag for me; Laurie returned and she and Sam helped Bob to prepare. All four of them were rocks of steadiness and compassion.

Many others were ready to help (bless you all!) Jude Weiss, a longtime friend of mine, began making plane arrangements to meet me in Cleveland for the long night of surgery. My parents were planning to come up to be with Katie and Sam in the short term. A much longer list of friends were ready to step in as we needed them; just knowing this helped.

As the minutes ticked by Bob became concerned that we might not be able to make it to the airport in time because the baseball game was about to get out. The mayor of Somerville, Joe Curtatone, offered the assistance of the police if this became a problem.

We had piled our stuff by the door. Bob was looking around the house and realizing a bit poignantly that if everything worked out he would be in Cleveland for 8 weeks and would completely miss the spring in our backyard. Doctors were offering encouragement – “you can get through this. And if it works, you might cured of hemophilia tonight.”

We were waiting to hear which airport they were sending the plane to – Logan or Hanscom.

The phone rang, and it was the wonderfully calm transplant coordinator from Cleveland. Instead of telling us how to proceed, she delivered the news that sadly, the doctors had learned more about the donor and decided they needed to reject the organ.

So we all had to stand down and go back to regular life, as best we could. (Again)

This has been the seventh call since October. Three times Bob was called for back-up, three times into the hospital at MGH, and now once – almost – to Cleveland.

We are pleased Cleveland Clinic has Bob in mind, and everyone says that one of these times it will work. Bob talked to another Episcopal minister the next day who had a transplant six years ago and described how strong and healthy he felt now compared to just before the surgery.

Thank you to everyone who supported us with your thoughts and prayers and actions.

As I was editing this post, we just received another call…
This time from Mass General Hopsital. We are on back up notice once again and dinner just went on hold…

 

An hour later - another false start. So it goes... One of these times it will work.

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.

Ten days ago I had the privilege of attending the Third Institutional Investor Summit on Climate Risk at the United Nations. I would never have believed that such an event could have taken place except that I saw it with my own eyes. Indeed, I imagined it in my own mind, long before it was a reality, in 2002.

Early on the morning after the meeting, I went for a swim in the pool on the 27th floor of the hotel. The sun was rising over the East River, behind UN headquarters, and the light flooded through the glass and made the water around me glow.

I thought about what a peculiar privilege it was to be a mammal swimming in 280,000 pounds of warm water suspended three hundred feet above the ground.

I thought, as I do every day, about why we require so many human beings to live under inhuman conditions so that a so few of us can live in real comfort.

I thought, as I do every day, about how strange it is that we are willing, as a society, to pee such gigantic amounts of carbon dioxide into the swimming pool of our atmosphere.

How could we imagine that such foul behavior would not wreck our earth, that it would not, if unchecked, destroy all but those wealthy and shameless enough to dodge the consequences of this collective folly?(1)

We are taught -- falsely -- that we must accept injustice because of the physical limits of the earth.

We accept -- wrongly -- that what is defines what will be.

We think that we are confined by our material conditions, but I believe that we are mostly hemmed in by our lack of dreams. Too many people - big people, fancy people, powerful people -- have entered the 21st century with 19th century buckets covering their heads. You must help them remove those buckets. That is what Bory would want you to do. You must push them to look at (2) the world we actually live in - and the world it could become.

Take the field of clean energy. Five years ago, at the time of the first Institutional Investor Summit, few fiduciaries or money managers had even begun to consider whether the largest physical changes in the history of human civilization would have any impact on their portfolios. Their attitude was: we never had to think about it before, so we do we have to think about it now?

Now investors worth $15 trillion (3) are beginning to examine the structural absurdity of what Al Gore correctly calls their “subprime carbon investments” and the immense financial opportunities that will arise as the world moves into mind-boggling new technologies. (4)

A McKinsey Global Institute report released last week estimates that the cost of achieving dramatic efficiencies in greenhouse emissions would be $170 billion a year globally. (5) This might seem like a large number until one remembers that this is about the same amount as the stimulus package passed at high speed, without hearings, by a panicky Congress.

What transformations will be possible in the future? We will only find out if we dream the biggest possible dreams.

The United States, the United Nations, the Investor Summit, the swimming pool in the sky - all of these were realities that began as ideas. If there is one motto that I would like you to write down and to pin by your bedsides so that you see it every morning when you wake up, it is this: reality follows ideas.

The Internet seemed huge and untamable until just ten years ago when two graduate students at Stanford wondered if it would be possible to index not just a few things, but everything. (6) Then we had Google.

When the discussion of hydrogen fuel cell cars first came up at the beginning of the decade, leaders and journalists scoffed at the idea of converting 120,000 gas stations at a potential cost of $1,000,000 each - 120 billion dollars! (7) Then we spent more than four times that amount -- $500 billion and counting -- on the war in Iraq. (8)

What lies ahead? It depends on whether you can imagine swimming in the sky.

I believe you will see everyone's individual genome on the Internet. Will that mean liberation from sickness or a harsh new regime of profit-driven discrimination that punishes the ill for their inherited disease? (9)

I believe that you will see the majority of the world's population gain access not only to each other but to the entire intellectual genome of our species -- in other words, education for everyone everywhere for free.

As we move to an entirely new energy economy, we will need to concentrate some power production in specific places, though we must remember that concentrated systems are always vulnerable to pollution and terrorism, corruption and collapse. We must also disperse new forms of energy and technology directly into the human communities that need it.

When post-apartheid South Africa wanted to give telephone service to millions, they realized that they could skip laying phone lines and go straight to cellular. (10)

We see that kind of leap-frogging all around us. China is building 40 new cities in the next ten years and every single building in every city may have high-speed wireless Internet. (11) Those buildings could control their internal temperature the way in a similar manner to the way our brains control temperature in our bodies, creating a whole new universe of efficiency, savings, and prosperity. Or they could watch our every move.

One brilliant couple is designing phosphorescent cloth that absorbs sunlight during the day and releases it during the night. (12) With this there is no need for C02 emitting power plants or high voltage lines that cut through the rainforest. Do you need to read in the dark? Unfold the cloth. Do you want to go to sleep? Roll it up. (13)

Another group of scientists is tapping kinetic energy through a light knee brace that captures the forward motion of walking. Humans eat food created through sunlight, then translate that food into calories and movement. That movement, if captured in the brace, could create enough electricity to power cell phones or pace makers, or heat the body in cold climates, or run a small computer, even a small business. (14)

A team of students responding to a $5,000 challenge from Google.org seem to have to solved the problem of transporting, filtering, and storing clean water for poor people through a cheap tricycle. The container is built into the frame of the trike. The pedaling power pushes the water through a filter and into a reservoir in front of the handlebars, where it can be stored away from contamination by larvae or bacteria - until the person needs to bike back for more. (15)

There are millions more such ideas imbedded in your minds and of those around you.

Will such inventions move us forward or backward? We will reverse poverty and climate change -- or will we accelerate them? That depends on our mental and moral commitments - your mental and moral commitments.

Every one of you sitting here is harboring dozens of viruses that are being suppressed by your invisible immune systems. (16) If your invisible immune system failed, you would rapidly be covered, for example, by very visible warts. This suppression is an unconscious gift from our ancestors. Similarly, every day we make choices that support or suppress the moral immune systems of our society.

Do we seek security - or do we seek justice?

Do we blame - or do we forgive?

Do we fear - or do we love?

It will be up to you - and people like you -- whether tomorrow's inventions will be stolen by the cruel and the powerful -- or employed to achieve prosperity and democracy for all.

Muhammad Yunus, founder of Grameen Bank and winner of the 2006 Nobel Peace Prize, recently told an interviewer that poverty exists because human beings have accepted -- and continue to accept -- the idea of poverty. “You create what you imagine,” he said. (17)

Reality follows ideas.

In sum: most of the choices ahead will not be driven but what lies outside in the physical work, but what lives inside our hearts and spirits.

If we become what we believe, (18) then what will you choose?


The Rev. Dr. Robert Kinloch Massie (www.bobmassie.org) is the founder of the Global Reporting Initiative (www.globalreporting.org), the former executive director of Ceres (www.ceres.org); and the one of the originators of the Investor Network on Climate Risk (www.incr.org). He lives in Somerville, Massachusetts.


NOTES

1) Speech given by Dr. John Holdren, Teresa and John Heinz Professor of Environmental Policy and Professor of Earth and Planetary Science, Harvard University; Director, Woods Hole Research Institute; Chairman, American Academy for the Advancement of Science - see www.ceres.org/NETCOMMUNITY/Document.Doc?id=282

2) www.incr.com

3) www.csrwire.com/News/11002.html

4) http://www.nytimes.com/aponline/world/AP-UN-Climate-Investors.html?ex=12...

5) Diana Farrell, “The Case for Investing in Energy Productivity,” McKinsey Global Institute, released February 14, 2008 - www.ceres.org/NETCOMMUNITY/Document.Doc?id=280

6) Sergey Brin and Lawrence Page, “The Anatomy of A Large-Scale Hypertextual Web Search Engine, Stanford University 1998 - original paper still posted at http://infolab.stanford.edu/~backrub/google.html

7) http://www.infoplease.com/askeds/number-gas-stations-us-1995.html

8) http://www.nationalpriorities.org/costofwar_home

9) http://www.nytimes.com/2008/02/24/health/24dna.html?bl&ex=1203915600&en=...

10) “Infrastructural Investment in Long-run Economic Growth: South Africa 1875-2001”. J.W. Fedderkea, P. Perkinsb and J.M. Luizb _aUniversity of Cape Town, South Africa_bUniversity of the Witwatersrand, South Africa _Accepted 9 November 2005. Available online 5 April 2006. World Development Volume 34, Issue 6, June 2006

11)“Cisco to network whole cities” by Kevin Allison in San Francisco, FT.com site; Dec 23, 2007
“Cisco Systems, the world's biggest maker of data networking equipment, plans to launch a business group, based in Bangalore, India, that will wire new buildings and even entirely new cities with state-of-the-art networking technology… China estimates it will need to build 40 cities over the next 10 years to accommodate migration of workers from the countryside.”

12) Sheila Kennedy and Frano Violich of Kennedy Violich Architects www.kvarch.net/

13) www.portablelight.com; for an interview with Sheila Kennedy about application and acceptance among Mexico's Huichol populution, see http://www.theworld.org/?q=node/9196

14) http://www.sciencedaily.com/releases/2008/02/080207140751.htm

15) http://googleblog.blogspot.com/2008/01/team-aquaduct-wins-innovate-or-di...

16) http://www.answers.com/topic/wart?cat=health; see many other Google references under “verruca” and “immune suppression”

17) http://povertynewsblog.blogspot.com/2008/02/if-you-think-poverty-should-...

18) See the concluding chapter to Robert Kinloch Massie, Loosing the Bonds: The United States and South Africa in the Apartheid Years (New York: Nan Talese - Doubleday, 1998)

From Bob on 2/17/08:

I just got back from the Third Institutional Investor Summit on Climate Risk at the UN -- I had to push extremely hard to get through this event, but it was an enormous pleasure to see so many friends and to watch this idea that had seemed crazy a few years ago blossom into something so huge. The information about the event is at www.incr.com. The people at Ceres worked amazingly hard to make it all happen. Tim Wirth of the UN Foundation was a model, as always, of graciousness and Mindy was a powerhouse urging investors to act boldly and to invest in the dramatic transformations that will be taking place as new technologies come online. A report released by the McKinsey Global Institute highlighted that much of the growth in energy demand -- 2/3 of it outside the United States -- could be achieved through efficiencies. The vivid presentation by Professor John Holdren of Harvard (the current president of the American Academy for the Advancement of Science) made it absolutely clear that climate change is accelerating and must be tackled aggressively and immediately. He made this point again in a news conference yesterday.

I had the chance to meet the Secretary-General of the UN and many other interesting and notable people. Of course people tended to think I am doing well because I assiduously rested before every gathering and took naps and stayed in my room at night. Then I went out to the meeting and the reception and my natural extraversion took over and I was able to forget momentarily that I am carrying a piano on my back.

I had an amusing encounter with Al Gore, who was the speaker at lunch. He gave an incredible speech in which, among many things, he said that since it was clear that sooner or later there was going to be a price on carbon and that because of this he hoped that every major investor would scour their portfolio and get rid of their "sub prime carbon investments." With McCain, Clinton, and Obama all supporting the idea of carbon caps his logic seems impeccable, though many investors remain clueless. This no longer surprises me. I read a report about the likely downgrading of bond insurers in the Financial Times back in November -- it seemed all but inevitable. But now that it is happening everyone is acting as though it was completely unthinkable until last week. Thanks to my cousin-in-law Murray who sends me fascinating articles, I am now reading the views of people like Bill Gross of Pimco who nailed the details of what is happening in a great piece last month.

At the end Gore took questions and I asked him about the challenge that investors had in knowing more about a company's sustainability and climate performance. I said that I heard him talk about "full spectrum reporting" and that perhaps he would like to comment on this. I was hoping it would prompt him to mention the importance of the disclosure of climate risk and other key sustainability elements.

I had asked the question for a specific reason. When he gave a keynote talk in Amsterdam eighteen months ago at the Global Reporting Initiative conference in which the new "G3" version of the guidelines were released, he had spoken to 1,200 people from 67 countries about the importance of, as he termed it, "full spectrum reporting." He said that he had learned in high school that visible light is only a small portion of the spectrum; the full band includes infrared and ultraviolet and beyond. When he was vice-president, he used to get a daily intelligence briefing in which information had been gathered across all of these, and this information was far more comprehensive and revealing than what one could see from a visible-light photograph. He used this analogy to suggest that it was important for investors to go much deeper in assessing companies than was possible through the use of traditional financial statements -- that there needed to be "full spectrum disclosure" by companies and thorough assessment by investors of the total picture. I of course agree with this since current accounting rules apply nineteenth century concepts to twenty-first century realities, which is one reason why people are able to game the system through off-balance sheet tricks and leveraged debt obligations. (I personally believe that if every company in the United States had been pondering and reporting on the social and community impact of their practices, the flimsy and fraudulent sub prime process would have been curtailed or prevented because it would have been obvious that it could not be sustained).

In any case, Gore offered, again, a pithy and excellent summary of the need for a complete, generally accepted form of disclosure. He then stopped and looked at me. "Is that what you were looking for?"

"Well," I said, "I was kind of hoping that you would mention the Global Reporting Initiative."

And the whole room burst out laughing -- I guess many people know that my commitment to action on climate is linked to my belief that companies must see their actions as part of a broad definition of sustainability, a definition that includes tackling poverty, as Prof Holdren and many others at the conference stated. "Of course," said Gore, smiling. Then he said strongly supportive things about the GRI.

I had not intended this in any way to be a commercial, but I guess my passion for the work of both Ceres and the GRI was pretty obvious. I am sorry that I will not be well enough to go to the GRI conference in May in Amsterdam because so many things are happening globally, many of which are leaving America behind. The Swedish government is requiring all state-owned companies to report according to GRI by 2009. 87% of emerging market companies now issue sustainability reports. You can see all this at www.globalreporting.org

I really appreciated everyone's warmth. I have also noted that for those people I have known for a long time it can sometimes be hard for them to comprehend the idea that I am neither much better nor much worse than over the last year. I think culturally as Americans we like trend lines -- up or down. A flat line seems strange and people don't quite know how to react to it -- of course I don't really either. Sometimes the conversation was able to go a little deeper, or people knew that I have received five calls for possible transplant since last October. Everyone thinks that is encouraging, and I guess I do too, except that I know that this is so variable. I could be called tomorrow or not for another year. I wouldn't mind waiting as much if I didn't feel so crappy.

Quite a few people told me of their experiences with serious health problems -- either personally or with close family members or friends. One young man told me that his father got a liver transplant five years ago, when he was 51 (my age) and that he now, at age 56, plays basketball three times a week. Wow! I found that hugely encouraging. It also reminded me of the joke about the man with the broken arm who asks his doctor

"Doctor, when I get my cast off, will I be able to play the violin?"

"Why, of course!" says the doctor.

"That's wonderful," says the man, "because I couldn't play it before."

I don't think that with my knees I will be playing basketball any time soon, but the idea that his father came through the surgery so well and now feels such vigor was a source of great hope.

That's all for now. Back to resting, reading, and taking care of Anne and Kate who have both had the flu.

There was an article in the January 25 edition of the Financial Times that mentions Bob. But I totally disagree with the author...Bob is indeed a social entrepreneur!

Website update January 18, 2008

What a week!  Almost there but not quite.

Yesterday, Bob rallied and spent all day at a board meeting of Ceres, the wonderful organization he had headed up until his illness made him step down five years ago. He continues to be a member of the board and yesterday summoned the energy to participate for much of the day. Of course he came home exhausted. After a simple dinner with me, Katie, (now 9 years old) and Sam (who is home from Yale for a semester), Bob was getting ready to go straight to bed, when the phone rang. Katie called me – “Mom it’s someone from Mass General”. What we thought would be an automated appointment reminder turned out to be “the call”. They said they had an offer (i.e. a liver) that would work for Bob and we should get to the hospital immediately.

We have already had some experience with this kind of thing. Bob was the “back-up” for several transplants in October. One of those calls had come the evening of the last Ceres Board dinner. Bob had gone through the whole dinner without touching a bite in case he was called in for surgery. A week after that, he was called in to the hospital, only to get sent home again.

This time, though, everyone sounded very optimistic. It was an unusual scenario – the liver was destined for a small child and the surgeon for that operation expected to use only a quarter of the organ, leaving three fourths for another patient.  This was a way to get Bob a good healthy liver without having him be at the top of the list with a high MELD score.

It seemed like everything was lined up perfectly.  Sam was home and could take care of Katie and field calls from family and friends. I am on winter break at RISD and don’t have classes. Last Sunday, our friend Steve Clark had just given Bob a cd of music from services at our church. While we ran around grabbing the bag we have had packed since October, and throwing in books Katie collected for me to read, Sam loaded the music onto his Ipod so that Bob could go into the OR listening to familiar hymns.  We dared to hope that the stars were aligning for us.

It only takes us a few minutes to drive to the hospital and Bob was calling his family on the way. After a short wait we met the chief surgeon and head of the transplant program who would be doing the surgery. He was clearly excited and ready to go. He spoke with us for a half hour outlining the issues and the procedure and explaining that the liver was being divided in New Haven and then the section would be flown directly to MGH. As soon as he heard that it was all OK, he would send Bob to the OR to be sedated.  By then it was almost 9pm. The doctor expected to send him to surgery about 10. Minutes later the call came and we learned that the sectioning had required the surgeon to take the entire left half of the liver and the remainder was too small for Bob.

So we went home again.  The whole adventure had taken less than three hours.  It was very surreal and quite disappointing.  Another dry run. We are going to be very experienced with how this works by the time it really comes to pass.  It was great to know that Sam was here, that Katie would be cared for, our friends were available to come wait with me all night and our families were ready to be on call from afar and to come help as soon as needed.  It would be great to get this done at Mass General, but Bob is also listed in Cleveland. Should a call come from Cleveland that would be more complicated, but we went out there in December for a check up and met many wonderful people who have offered us support and even a place for me to stay.  So we continue to wait and to appreciate how ready everyone is to support us.

We also want to thank everyone who has participated in the Massie Family Trust. We are tremendously grateful to you all.

I used to live 2 doors down from Bob in Somerville. I saw Bob in early November 2007 to drive him to Mass General for a regular checkup. Bob is as funny, brilliant, loving, and charismatic as ever. His daily window of alertness has shrunk considerably though over the last year. He said that he sometimes only has a few hours a day of awake time in between his naps. He seems in good spirits, though he's not looking forward to going through the winter--always a tough time of year for him.

At one point, Bob was a candidate for a living donor liver. In a living transplant, a large portion of a healthy liver can be removed and transplanted, and it will regenerate to its original size in both the donor and the recipient. Bob is no longer a candidate for a living donor transplant because his spleen is enlarged and is forcing a very high blood pressure through the liver. Doctors are concerned that the high blood pressure coming from the spleen would damage the small transplant liver before it had a chance to regenerate in his body. So he is no longer a candidate for a living donor transplant. That leaves him to rely on an organ donor.

Bob's MELD score, a measure of how healthy the liver is, had been stable for some time, but has been climbing in recent months. (The higher the score the worse shape the liver is in.) Bob is now on two organ donor lists for a liver: one list at Mass General and the other at the Cleveland Clinic. He and Anne make periodic trips to Cleveland for checkups, which receives a larger number of donor organs than does Mass General. He is in the middle of the lists, which are prioritized by a variety of factors including state of health. If someone comes in who is sicker than Bob they'll be moved higher on the list. If Bob gets sicker, he'll be moved higher. He could be called at any time, which means that he'd have to get himself immediately to the hospital and prepped for a transplant operation. He has been called several times in the last few months, and even got to the point of getting into hospital scrubs at Mass General, but for various reasons a suitable organ was not available. So he waits... I don't know how Anne holds it all together--between her work at RISD, and raising Kate who is as shy and retreating as ever (NOT!), and running a household. And all the while a smile on her face. My hat goes off to you Anne! Bob's boys seem to be flourishing--Sam is at Yale and studying economics and Chinese. John has finished his first semester at Duke. Kate is a source of bright, effusive energy. Bob and Anne have an arrangement with their upstairs tenants to help out several days a week with dinners and occasionally with watching Kate. They think they'll also be able to hire someone to come in to help with household cleaning, which will take some of the load off Anne. I keep Bob and Anne and kids in my prayers, and invite anyone who is reading this blog to do the same.

Kate Parrot

After a long winter and great anticipation of warmth and sun, we have literally started the summer on the wrong foot.

We went down to Princeton over Memorial weekend to celebrate my parents' 50th wedding anniversary. We had a wonderful party with many of their close friends and all of my siblings and their families. It was a great time.The next evening several of us went for a walk in the Grounds for Sculpture a beautiful and interesting park near Princeton. While crossing "the Bridge at Giverney" a creation made to look like the pond water lilies paintings by Monet, Bob slipped and fell. The wooden bridge was very slick from the fog spewed by jets at the water's edge. Others had noted its slipperinessand in fact my cousin had slipped at the same spot the evening before.

Bob's right leg flew out from under hima nd he landed on his left leg snapping the bones in three places. Katie ran and got my parents and my brother Tom dashed to the car for Bob's factor so that Bob could do an injection even as he lay on the ground in great pain. Several people came to help, called for the ambulance and brought ice form the nearby restaurant. Teh EMTs came and took us to a local hospital. Through it all Bob was clear headed and calm, amazing in his courage and grace under fire.

After stabilizing the leg and getting him pain medication, they decided that the compound fracture, hemophilia and liver disease was too complex to deal with there and we were taken to Robert Wood Johnson Hospital in New Brunswick where he was operated on at 3am. The emergency surgery stabilzed the leg with an external fixative. Today, ten days later, he was moved to Mass General Hospital where they will doa secong surgery to put a metal plate in his leg. The first operation went well and we expect the second will also. The recovery will take all summer.

Fortunately, we have good insurance, a ramp to our garden and lots of friends and support. While in NJ, my parents did a great job of looking after Katie, Bob had a quiet private room and the hospital staff was truly great. As soon as the second surgery is done we will turn to recuperation and trying to enjoy the rest of the summer.

Anne

We always seem to start these messages with an apology. I guess it is a good sign that life is too full to keep up. But in case the silence worries anyone, let me say right off, that we are still holding steady. Bob has to endure one or more deep patches of exhaustion every day (he says it’s like being covered with a truckload of wet sand) but he has also learned to manage the rhythms better. He is in good spirits and staying productive in many different ways.

We had one bad incident in November right after Thanksgiving when Bob tried to come down to the kitchen one morning when he was feeling a bit groggy. He lost his balance, fell down the stairs, and landed on his back. The EMTs were a bit surprised when they came rushing through the door and found Bob sprawled on the landing with a needle in his arm, infusing a time-sensitive dose of clotting factor. At the hospital they discovered that he had cracked one of his vertebrae, but nothing more serious. Over the last two months that has healed well.

At our most recent visit to Dr, Chung in early December we found that Bob was pretty much in the same place as before. We continue to anticipate that his MELD score will rise, indicating further decline in his liver function, and when that happens we will move forward with a transplant. While we wait, the medicine he would take post-transplant continues to progress. Vertex 950 is in stage II trials and still appears to be very promising. In the meanwhile, Bob has been getting acupuncture and that may be helping his energy level a little.

We continue to have conversations with people who are familiar with the transplantation process. When Bob asked one experienced physician to describe what happens afterwards, he said “When it goes well, it is like the raising of Lazarus.” So that certainly offers us hope.

We had a wonderful Christmas season full of family. Sam was home from Yale and is obviously having a great time there. My parents came up for a few days - the first time they have had Christmas away from home. It was great to have them here. Bob’s mom Suzanne and Seymour were here and on Christmas eve we also had our upstairs neighbors, Abra and Chris, and as always our dear friend Betsy, making an even dozen. After a lovely dinner prepared by many hands, we lit the tree and sang carols. The late service at St James’s ended with 16 teenagers, including Sam and John, doing a spectacular rendition in four-part harmony of the Bell Carol - put together just before the service!

Lately life seems to be full of music – Katie is making progress on the violin and is starting to learn some fiddle tunes. Bob plays his guitar or banjo with her. She is also singing in the St James’s choir and in the North Cambridge Family Opera production of Antiphony – scheduled for the first two weekends in April - all are invited. John keeps drumming, improvising on the piano and now is learning to play the guitar. He will drum with the St James’s Men’s Chorus next Sunday.

My own work has been very demanding and interesting this year. City-State had an exhilarating Board of Advisors meeting last fall followed by a beautiful reception at President Mandle’s house. This spring we are producing an exhibit of student projects for the 195 corridor in Providence – a truly collaborative project involving RISD, Brown, Roger Williams and the Providence Preservation Society. In addition, I’m helping plan the Congress of New Urbanism XIV, for Providence in June.

Both Bob and I have continued to stay connected to politics at a wide variety of levels. We were delighted when our friends Denise Provost and Pat Jehlen were recently elected in special elections for the Massachusetts House and Senate. We are extremely excited about Deval Patrick's campaign for governor, and we have had the pleasure of holding a house party for him, offering policy advice, and getting to know him as a friend. Finally, Bob recently co-authored an op-ed piece in the Boston Herald with John Kerry, which we will post.

Some days Bob feels like he is in a peculiar kind of exile and has to survive on raw patience. Other times he is very aware of -- even grateful for -- this rare opportunity to read and reflect. He is definitely cultivating the long view; the stacks of books around our bedroom, on topics from early American history to the philosophy of accountancy, continue to grow. He alternates between being stuck in glue and being filled with excitement, enthusiasm and creative new ideas. We are all hanging in there -- and we are grateful for your support.