An Overview of Bob’s Health (Anne)

An Overview of Bob’s Health (Anne)

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.

In June 2004, 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.

If you or anyone you know is interested in learning more about living donor transplants, please read the donor information page.

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