A Tale of Two Hearts
Episcopal News Service. November 19, 1998 [98-2265]
Chris Herlinger, Information officer for the Church World Service Emergency Response Program.
Days after setting up his computer at his bedside and tacking posters to his hospital room wall, Bishop Jeff Terry, who heads the Diocese of Spokane, Washington, contemplated the road ahead.
It has been nearly two years since he was put on a national waiting list for a heart transplant, but recently Terry was put on "Status One." That puts him at the front of the line for a transplant, but it also means he will be conducting diocesan business from the Sacred Heart Medical Center for the foreseeable future.
Nurses have been warned that Terry will not be confined to his hospital room, and he is already dictating letters, reading mail, answering phone calls. He will host a long-time group of fellow Spokane religious leaders, who meet informally once a week, at the hospital cafeteria.
But given the long waiting period for a proper match and the sheer luck of the transplant process -- matches are made on factors such as body size and blood type -- it could be months before Terry receives a heart.
It is difficult not to talk to Terry -- a robust, active man who once loved to jog-and not hear the frustration of being hospitalized. But he says the journey he has been on has taught him valuable lessons -- one of them being the humbleness of knowing hundreds are praying for him. "I've learned a lot, including the strength of the Christian community, and what it's like to have a network of people who care for you and love you," he said. "When hundreds are praying for you, you better understand that everyone is loved more than we realize, particularly by God."
Terry first discovered heart problems in the early 1990s. In 1992, he had a pacemaker placed in his chest and continued his jogging regimen. But in 1995, Terry suffered from a severe case of arrhythmia of the heart, and since then his condition -- a seriously enlarged heart that is not pumping enough blood -- has worsened. He was placed on the "Status One" list and hospitalized amid growing concern that his heart was not supplying enough blood to his kidneys.
The nearly two years of being on "Status Two" were nerve-wracking, Terry said. Because hearts must be transplanted almost immediately after the death of the person donating the organ, his travel was limited to areas within two hours of Spokane. On extended trips, Terry had to line up a pilot for a possible return flight back.
In some ways, Terry said, that was a blessing for both him and the diocese. Churches developed joint confirmation services; and he began to relied more on lay leadership. And he curtailed what had been a typical "pressure cooker" schedule for a bishop -- a life marked by evening meetings, weekend work and constant travel.
"It led me to review what I do," Terry said, "I basically said, 'nuts' to that kind of schedule. It's built into the system, and it's not healthy."
Other bishops, Terry said, have asked him, "'Tell us what you learn from this.'"
One thing Terry and his wife, Carolyn, have been forced to learn is that there is a chronic shortage of organs. This has turned both, but particularly Carolyn, into activists for the cause of organ donation, and the need to educate people that donors must not only designate themselves as organ donors, but must also inform their families about their wishes. In emotional moments, Terry said, families often ignore donors' requests.
Calling her husband "a very self-effacing guy" who would not join a cause merely to benefit himself, Carolyn said she is in the one "more in your face" about the search for more organ donors. "I'm the family activist," she said, and her role has been particularly noticeable within the diocese, where she has spoken and organized displays about the chronic lack of donors. The needs are acute: for every 20,000 Americans receiving transplants, another 50,000 are awaiting transplant operations. In 1996, over 4,000 died before a suitable organ could be found, according to one report.
Others are lucky. The Rev. Bob Brown of Houston, who has been seconded to the Anglican Communion office in London as its video director, celebrated the first anniversary of his heart transplant on October 1 and says the results have "delighted" his doctors. "There have been no complications at all," he said from his Texas home, noting that rejection usually occurs within three months of the operation.
Brown's situation shows how each transplant is unique and presents different challenges. He suffered cardiac failure caused by a viral infection doctors say he may have picked up while working on assignment in Thailand.
Brown, 70, ailed quickly and was immediately put on "Status One." He received a heart within four months. Saying he was otherwise healthy, doctors at the Texas Medical Institute in Houston, where the surgery was performed, were astonished to learn Brown's age. "My doctor told me, 'I hope a heart drops out of the sky for you.'"
In this case, Brown's age served to his advantage. He received the heart of an older person -- reportedly an older Texas fireman in robust health -- and that is something a young person or someone in middle age would not be able to do. "The older hearts work better for older people," he said, "and this has worked beautifully for me." Doctors say the new heart may extend his life another 18 years. Brown's recovery has been relatively rapid and he is eager to return to his London assignment. Though disappointed that he was not to be able attend the Lambeth Conference, he was still able to coordinate video production in Houston and plans to produce a post-Lambeth video. "I'm thrilled," he said.
The Terrys hope for a similarly happy outcome. They know the risks. Assuming Terry receives a transplant, the body can still "reject" the heart, and even with success, he will still be on long-term medication.
The couple has faced an ordeal -- an ordeal that has tested patience and even hope, and has interfered with even the simplest of plans, whether attending a diocesan event or tending to the family garden. "I'm living in the Good Friday," Carolyn Terry said.
She added, "I don't see God writing all of the footnotes. That's a kind of 'laboratory' theology that portrays God as dealing with people like they were laboratory experiments." At the center of her experience, she said, is a new appreciation for the Eucharist as a source of strength and the supreme importance of having a community of believers as friends, colleagues and fellow worshipers. "I don't see how people can do these things without a faith community, without a church," she said.
Her husband concurs. "The Eucharist is a much more powerful experience now," he said. "I'm much more emotional than I used to be. But it's not sadness. There are also tears of joy. Every day is a gift. You don't have it coming. It's a gift."