N E W P O R T

SAVING A MAN

HE NEVER MET

Chance encounter brings together kidney recipient, donor’s family

By CORIN HIRSCH

For THE COMPASS

When Walter Michelsen finally met Patricia Schmidt, he took her hand and placed it on the lower right side of his torso.  “He’s still here,” he told Schmidt, referring to her son, Bob Sutter. “Bob will live inside of me.”  Sutter had passed away four years earlier from complications from muscular dystrophy, and the kidney his family donated had rescued Michelsen’s life. That the pair met at all took a dose of serendipity; that these two people now call each other extended family is little surprise.  From the time her son was a few months old, Schmidt knew there was  something “not quite right” about Sutter, the byoungest of her three children.  Though he was a bubbly, loving little boy, there were small telltale signs, such as the way he would flop over when he was sitting up in their Newport home.  She got the answer when he was three-and a-half years old: Sutter had duchenne muscular dystrophy, or DMD.  Sufferers of DMD are deficient in dystrophin, a vital muscle protein, and its absence causes gradual weakness and wasting of muscles over a truncated life span.  Most of those with DMD are diagnosed before the age of six, and do not live beyond their late 20s or early 30s.  Despite his illness, Sutter had an effervescent personality, charming those whom he met, including his classmates, friends, nurses, as well as Jeanne Shaheen and Al Gore.  But by the age of 12, Sutter was in a wheelchair. He asked his mother if he was going to die; she told him “eventually everybody dies but we don’t know when.” When he then asked if his wheelchair would fit into his coffin, she told him gently he wouldn’t need it.  By 2007, Sutter had been on a ventilator for 10 years. His mother and a rotating roster of nurses attended to him 24/7 in Schmidt’s downstairs dining room in Newport, a room painted turquoise with purple curtains—Bob’s favorite two colors.  In April of that year, Sutter was admitted to Dartmouth-Hitchcock Medical Center after suffering a heart attack.  His extended family gathered at the hospital for several harrowing days during which they decided whether or not to keep Sutter hooked into life support.  Doctors told Schmidt, his father and others that Sutter’s brain activity had slowed to a minimum.  “It was a difficult decision, but it was time to let him go,” Schmidt said. The family gathered as Sutter was unhooked from life support. He died within 10 minutes, at the age of 25.  Schmidt had not previously considered organ donation.  But a few months prior to her son’s heart attack, Sutter’s grandmother had asked Pat if she would consider donating Bob’s organs. “I hadn’t thought about it,” Schmidt said. Then the pair didn’t discuss it again—until hospital staff asked her about it during Sutter’s last days.

In need of a kidney

Walter Michelsen was a 50-something fiscal director at the Visiting Nurses Association in Concord, N.H. when he was diagnosed with polycystic kidney disease, or PKD, in 2003.  PKD leaves the kidneys riddled with debilitating fluidfilled cysts, and is the most common inherited disease in the U.S., afflicting 600,000 Americans. About half of those with PKD have kidney failure by the time they are 60.  Michelsen started dialysis in early 2004. The  debilitating illness was not his only worry:  Michelsen’s wife, Paula, was battling colo-rectal cancer, and underwent major surgery a few months after her husband’s diagnosis. She needed constant attention, and Michelsen worried about how his own worsening condition might compromise her care.  Michelsen was placed on the kidney transplant list in May 2004. Since both of his parents had passed away and he had no siblings or living relatives that could  donate a kidney, he was told he would have to wait for a “cadaver kidney” and that the wait might be as long as four to five years.  A year later, Michelsen was sitting at his desk one April morning at 8:15 a.m. when the call came in.  A male nurse asked him, “Is this the right person? If so, a donor has been found.”  “I turned white and cold, and started shaking and crying. It was so emotional, and such a relief,” he said.  Michelsen was told he needed to travel immediately to Dartmouth Hitchcock Medical Center in Hanover. He was in the operating room by 1p.m., and surgery was wrapped up four hours later. Michelsen was in the hospital for nine days as doctors watched his creatinine levels—dangerously high in those with PKD—drop.  He was released on April 28.

Separate lives

Organ donation is an anonymous process, and the New England Organ Bank keeps donors and recipients’ information private from one another. About six weeks after her son died, Pat Schmidt received a letter from the New England Organ Bank giving rough details about the four people who had received her son’s donated organs.  Sutter’s corneas, one each, had gone to a man and a woman in their 20s. His right kidney had been placed in a woman in her 50s, and the left kidney went to “a 55-year-old man who was an accountant.”  In June 2005, two months after he had received his new kidney, Michelsen sent a letter to his donor’s family through the organ bank, expressing deep appreciation for the “gift of life.”  Schmidt received the letter, and sent one back through the organ bank. But for some reason Michelsen never received it. The two never connected, and both went about their  respective lives—Schmidt as a mother, grandmother and manager at The Anchorage in Sunapee, and Michelsen as a husband and fiscal director. Michelsen’s wife eventually passed away from her illness.  Fast forward three years. Pat Schmidt’s sister, Geri Panno, played volleyball once a week in a league in Nashua, N.H. As she started to learn more about one of the participants—a 55-year-old widower who had had a kidney transplant—she began to wonder when and where that transplant had taken place. Could he be carrying Sutter’s kidney?  It took about a year for her ‘a-ha’ moment. Last month, on July 9, Geri called her sister and asked her a few questions:  What date did Bob die? What do you know about the man who received his kidney?  When Pat seemed puzzled at her questions, she told her about Walter, the man she played volleyball with once a week and who she suspected might be carrying Bob’s kidney.  Geri called Walter and asked him the same questions.  “What date did you have your transplant?” She then called Pat back. “Our Walters are the same person,” she told her sister, a realization that was later confirmed by the organ bank.  Schmidt called him a few days later, and got his voicemail.  “I wasn’t prepared for how emotional I was going to be. My voice cracked as I left a message.”

Making the connection

The pair spoke later that evening, then again the next night. They agreed they would like to meet, and Schmidt invited Michelsen and his girlfriend over for dinner on the next Sunday afternoon.  As the time neared, Schmidt said she got more nervous.  “What if I don’t like him?” she thought. She put out cheese and crackers, put the finishing touches on shrimp santorini, and waited.  Her worries were for naught.  “Walter gave me a hug that I thought was never going to end,” Schmidt said. “He kept saying thank you, thank you, thank you.”  Michelsen stayed for six and a half hours, learning all about Sutter and about Pat’s family.  “Anybody that met Bob was touched by him. And he’s still doing that even though he’s dead,” Schmidt said.  Schmidt thinks organ donation has been portrayed inaccurately, citing the persistent myth that if someone is listed as an organ donor, then doctors will let them die in order to reap their organs. She can rattle off the sobering statistics of organ need: 102,000 people are on organ donation lists nationwide, and 3,400 of them live in New England. 18 people die every day in America waiting for an organ. Organs from one person can save 50 people. “And your skin and bones could go to hundreds of people,” she said.  Perhaps it is no surprise that Schmidt now volunteers for the New England Organ Bank, giving talks and presentations around the state. “Once I’d seen how much people’s lives have been changed because of Bob, I knew I had to do it.” Schmidt is also getting involved with the PKD Foundation. She and Panno will participate in a Walk for PKD in Boston on Sept. 12.  Michelsen is enjoying an active life and his new relationship. When he first found out he was to receive a donated kidney, he asked the doctor, “Why am I so lucky? Why did I get this kidney?” The doctor told him he deserved it. “He told me to honor it and do what I can.  And I am going to do my best to take care of it.”

In New Hampshire, residents can choose to become an organ donor when they receive or renew their driver’s license, or by  registering through the New England Donor Bank.

Donate Life New England: www.donatelifenewengland.org

Information about polycystic kidney disease: www.pkdcure.org