Somerville
December 11, 2004

Dear Friends and Family,

I would like to give you an update on Bob’s health, our family’s situation, and the current medical options. Because his situation is critical, we have decided to be bolder in our broadcast. This letter reaches forward with new information and back with some history and a review of our previous steps. For some of you this is an introduction to the challenges we are facing. For others it is a review and an update.

Bob is suffering from advanced liver disease. After probably thirty years of hepatitis, his liver is interlaced with a tough netting of scar tissue – cirrhosis – that cannot be reversed. He has tried three different courses of Interferon over the last three years, but his strain of the virus (genotype1B) is the most intractable and his liver is too damaged to tolerate the treatment and regenerate. While his liver can st ill function, he feels terribly sick almost all the time, is easily exhausted and worst of all suffers from encephalopathy, sometimes called brain fog, where his powerful brain slows to a crawl and he is locked into a kind of mental concrete, sometimes for hours on end. All of these debilitating effects are reversible but only with a new liver. A liver transplant is the only way to cure his disease and ultimately save his life.

The competition for organs from persons who have died is extreme. There are not enough organs to save all the people who need them. (This is a reminder to discuss donation with your families and sign your organ donor cards.) In order to qualify for a liver, you must get incredibly sick, but if you get too sick, then you are a bad risk for survival and you cannot qualify either. Because of the scarcity of cadaveric organs, and the debilitating nature of Bob’s symptoms, our doctors have strongly recommended the option of a living donor transplant. We are seeking a donor.

Last June, we sent a letter to some friends and family members. Many of them checked their blood types and a few came forward to explore with the hospital the possibility of becoming a donor. Because the hospital keeps these inquiries confidential, we don’t know who so generously considered this. Because the hospital is scrupulous about not pursuing possible donors, the hospital staff leave it up to a volunteer to decisively come forward. At this point, no one has done that. Even if someone did come forward, an extensive medical workup could rule the person out, leaving us back at square one. For that reason we are asking a wider circle of friends to consider becoming a donor.

This is a difficult request. As most of you have experienced, Bob is extraordinarily good at asking people to donate their time, money and resources to important causes. But he finds it very difficult to imagine that anyone would make this extraordinary gift to him. Yet we need to ask.

Living Donor Transplants

A living donor transplant is one in which a healthy donor volunteers to have approximately three fifths of this large organ removed and transferred to the recipient. This amazing alternative is possible because of the unique nature of the human liver, which is the only human organ that can regenerate. Both sections of the liver – in the donor and in the recipient – grow very rapidly. In the donor, the liver grows back virtually to its full size in less than eight weeks! This is major abdominal surgery, but, like kidney donation, it is becoming steadily more routine. In the end a liver donor is less compromised than is a kidney donor, for you quickly end up with a complete liver again.

At this point, more than 1,000 living donor transplants have been performed in the United States. We know of several people who have had it done, including a congressman from Massachusetts, who was a donor, and our Alderman’s wife, who was a recipient. We are cheered by the story of a young man who had a transplant and went on to win an Olympic medal in snowboarding. We just met Paul Quijano from Camden, Maine, who had a transplant four years ago with his brother’s liver. Both men are doing very well and had full size livers in three weeks! Paul volunteered that both he and his brother would be happy to talk with us and anyone interested in donation.

Hospitals have developed sophisticated protocols for selecting and caring for donors. The assessment of living donors is handled completely separately from that of the patient. Donors undergo thorough medical and psychiatric evaluations and have their own team of doctors and advocates. If the surgery takes place, the donor is in the hospital for a week, comes in for weekly check-ups for about a month, has a CT scan after a month to check on the liver’s re-growth, and can return to completely normal activities, including athletics, within two months. All expenses and follow up are covered by our insurance.

With a living donor, we could keep Bob from becoming dangerously ill , we could go through the surgery in Boston, and the surgery itself could be scheduled so that the doctors are all fresh and the outcomes are best. After a transplant, he would have a year of close follow up and anti-viral treatment to clear the hepatitis. Then he should be back to full strength and his active and committed work.

There are no words of gratitude that could express what such a gift would mean for Bob and our family. This would obviously be a life-giving measure, one that has potential to restore him to full vigor. A liver donation would also, incredibly, cure his hemophilia. This is because Factor VIII, the protein missing from his blood, is made in the liver.

Considering Donation

The optimal criteria for a liver donor are simple. The person must be in good health and have blood type O, either positive or negative. It is preferable that he or she be between 20 and 50 years old.

If you are w ill ing to consider this tremendous gift, we are happy to talk with you. It is also possible to contact the hospital directly, and they w ill keep all inquiries confidential. The hospital has a strict policy not to put any pressure on donors, which means that the burden of follow up falls on the donor. In addition, the transplant staff is very busy and we are concerned that they are not always prompt in responding to inquiries. We now have a new arrangement, and ask that people begin by calling us, or Doctor Ray Chung, who has been caring for Bob since his hepatitis first surfaced.

Coming forward as a potential donor is a big step, but it is only a first step. As part of the process, donors get a very full medical evaluation and speak with the transplant team, including the surgeon, psychiatrist, and other staff. There is time for substantial consideration and many issues can come up along the way to rule out donation. We are very grateful to anyone w ill ing to consider and pursue this option.

To contact the hospital directly, please begin by contacting Dr. Ray Chung or his assistant Abigail Mithoefer, who is coordinating the transplant intake for Dr. Chung’s patients.

• Dr. Ray Chung, rtchung@partners.org, 617-726 2241.

• Abigail Mithoefer, P.A.-C, amithoefer@partners.org 617-726-0628

• Ms. Susan Noska, Transplant Coordinator can be reached at 617-724-3872 or snoska@partners.org. Please cc. Ray Chung.

• Dr. Martin Hertl at 617-724-3730, mhertl@partners.org, is the surgeon. Donors w ill eventually need to meet with him.

• The Starzl Institute in Pittsburgh has good information about liver transplants at http://sti.upmc.com/organdonation.htm

Timing and Progress

After a lifetime of successfully powering past his own physical limitations, Bob has needed to change gears and adjust his life to the demands of this disease. I have been truly astonished at the grace and thoroughness with which he has done this. He has made a remarkable transition from a totally engaged and overworked global activist, to a more sedentary advisory role in Ceres. Two years ago Bob resigned from the job he loved as Ceres’ executive director, and went on disability. His health permits only limited travel with assistance. He remains connected and engaged through the phone and Internet and is st ill full of ideas. Overall, he deals well with the ongoing disappointment of not being able to give more energy to the important struggles he has always championed.

He has found new projects that do not demand the absolute concentration and follow through of his earlier work. While less energetic, he is no less committed to ideas and actions, as anyone knows who received (is there anyone who did not?) his missives about the Kerry campaign.

But it is clear that Bob’s energy and focus are declining. The change is not predictable or along some mathematical curve. On some days he is quite good; on others he is really stuck in the mud. Last summer the change was frightening. For several days in a row he would not “wake up” until late afternoon. Visiting friends in August, he would swing from utterly lethargic to alert and entertaining. One minute I’m wondering whether to take him to the hospital, and the next he is the life of the party. I have learned to ride the ups and downs and to watch for the longer trends.

In September and October, we had a kind of reprieve when he cleared up early in the day. We even went canvassing in NH every weekend, and rallied over a hundred people to go along. Since then he is more exhausted and feels very sick most of the time. It is easy to forget this when you are with him, as he does not complain and tends to power past it when he has a meeting or company.

As a family, we have successfully made the transition back to my academic schedule. I savor my time at home with Bob and our daughter Katie, who is enjoying first grade. John (15) is thriving in high school at Boston University Academy and Sam (17) is applying to college.

We recognize that this is an unusual letter. We are at a difficult time in our lives and we are reaching out to anyone who might be able and w ill ing to help. It is impossible to predict where this kind of help might come from, so we are sending out this letter as a broad appeal. I know that Bob has touched many different lives through his work, teaching and friendships. If you know anyone who might like to be in touch with him, pass this letter on. Please let me know if you have any questions or suggestions, or if you have sent it on to others. You can email me at annetate@rcn.com. Bob can be reached directly at rkmassie@rcn.com.

Please stay in touch. When Bob feels poorly, he gets stuck in the house. He appreciates receiving calls and email. If you need to be sure that he heard from you, please copy me on emails and I'll follow up. The “brain fog” means that he sometimes forgets what has come in the pile of messages. Even if unanswered, your messages are greatly appreciated. We enjoy visitors too, so please call if you can stop by for lunch or afternoon tea. In time and with your support, we w ill weather this storm.

Love to you all, Anne