Generations of Detroit women revered Dr. Sy Ziegelman, an OB/GYN for over 40 years. Along with active careers, Sy and Loretta, a retired social worker, raised 3 children. They led, Sy says, “fulfilling and exciting lives.” In November, 2008, this fun-loving couple vacationed in St. Pete, FL and marched, costumed, in the Key West Fantasy Fest (along with with thousands, many wearing only body paint).
“Marching in parades would soon become unthinkable,” Sy says. Two months later, Loretta developed trouble breathing.
Thus began an ordeal of bouncing from one doctor to another, from Beaumont Hospital in Royal Oak to Henry Ford Hospital in Detroit to U. of M. Hospital in Ann Arbor. A frustrating and bewildering experience for a husband whose life’s work was in medicine. Loretta was eventually diagnosed with IPF, idiopathic pulmonary fibrosis–what Sy calls “a fancy name for a deadly disease.”
Burton’s and my dear friend Doug Leith, from Toronto, died from IPF after 2 years of dragging oxygen everywhere and 3 weeks after making the transplant list. Sy says as many people die from IPF as die from breast cancer each year. The only hope of surviving is to obtain a new lung.
So informed, Sy swung into action. As his wife deteriorated, and developed other complications, Sy read all the journals and contacted professionals and checked his wife’s blood counts and sent reports.
In March, 2009, a lung biopsy confirmed the diagnosis. The Jewish Hospital in Denver agreed. “Being a physician helped me to navigate the minefield of medicine,” Sy says. The response of one of the world’s top pulmonary experts at Jewish Hospital was, Sy says, “an example of how extraordinary physicians can be. No arrogance. Just compassion.”
Though IPF is a fatal disease, Sy says, “NO ONE uses those words. They say there is no recognized treatment as opposed to the fact that the disease is fatal. I refused to accept it.”
The next months were a succession of transfusions, iron infusions, pulmonary rehab. “Every minute was devoted to some medical issue.” Imuran, thought to be a therapeutic drug, caused hepatitis. Loretta’s gall bladder was removed. Problems with the anesthesia required Loretta to be intubated. “There was no end to the hurdles. For 6 days I saw my beloved wife unconscious in the ICU on a ventilator. Would she live or die?”
That crisis necessitated Loretta’s spending several weeks in the hospital and many hours in rehab. Still, she made it past that hurdle as well.
“And then it was like someone turned a switch. The simplest activity required oxygen.” Realizing his wife needed him full time, Sy retired from his medical practice. He recalled a Yiddish proverb his father taught him. “You can’t dance at two weddings with one rear end.”
One of their twin grandsons, Evan, 10, made a DVD about his Gramma, his “most admired person.” Ultimately the video would be shared with the lung transplant team at the Cleveland Clinic. Nurses, doctors and PAs watched it, Sy reports, “all teary eyed seeing the disease and his grandmother through Evan’s eyes.”
The U. of M. refused to consider a transplant. At 70, they said, Loretta was too old. Sy’s 96 year old senior associate and mentor, Dr. Mort Lazar, advised him to take Loretta to Cleveland’s Cleveland Clinic. That recommendation would prove “the most important advice he ever shared with me.”
The transplant process began. Physical exams, blood tests, x-rays, CT scans, social workers, psychiatrist, financial counselors, cardiac catheterization, endoscopy, pulmonary function tests, medical records. “You don’t get an organ transplant without turning over every pebble. Some I didn’t even know existed.”
By Thanksgiving, 2009, Loretta’s breathing became more labored. “We were consumed with the preliminaries leading to winning the ‘lung lottery.’” The paperwork was endless. Loretta’s myriad of test results would be programmed in a computer which would produce a score. “The challenge is to survive until the score puts you at the top of the list.”
That December, Sy says, he and Loretta were sitting in their bedroom watching TV. “I was really watching Loretta, as I did every day. Did she have enough oxygen? How could I help her? The phone rang. We screamed and we cried. SHE WAS LISTED!”
But time dragged on. Loretta’s oxygen needs grew. The Ziegelmans packed a bag in their car, kept the gas tank full. If the call came, they’d have to race to Cleveland. “Day after day we wait. We survive. We hold onto the prospect that Loretta will get lucky. Each breath may be your last and often feels like it. For some, it is.”
They drove back and forth to Cleveland for testing. Loretta’s lungs worsened. She was raised to #1 on the transplant list. On Valentine’s Day, 2010, Sy emailed friends: “We were thinking perhaps they could find the right sized lung in Cleveland as opposed to a heart.” Not only was organ size a factor. Also necessary : a matching blood type.
After many weeks, a call came, and they sped to Cleveland. The lung wasn’t healthy enough. “We had no concept that a dry run happens at least 30% of the time.” Back to waiting. “When would we get the call? The winter was snowy. Would we make it to Cleveland in time?” 4 snow tires on his front wheel drive Avalon were his insurance. “Would Loretta’s lungs hold out until we got THE call. I forgot how to sleep as I listened to each breath she was still able to take.” Several weeks later, another call. Another race to Cleveland. Another lung that wasn’t OK.
They drove home in silence, “exhausted and without hope. When hope vanishes in the transplant race, the race is lost. The challenge was to get through the day and the next and the next until it was Loretta’s turn. We had to believe.”
On April 9, 2010, they met with the director of the transplant group in Cleveland. The doctor was “kind and honest.” Loretta’s need was “critical.”
They drove home again in silence. “The silence of acknowledgement. Life as a couple would end if Loretta didn’t get her call.”
4:30am the next morning, the phone rang. There was a lung. “I sobbed uncontrollably. Would the third time be a charm? I had to believe or I’d die of a broken heart.”
After the surgery, Dr. Ken McCurry, Loretta’s surgeon, reported to Sy. Loretta had received a right lung transplant. He thought she’d do well. Sy says, “I don’t have an appropriate vocabulary. She was alive! She WAS alive!”
The next weeks and months were challenging. Loretta met her “lung sister.” Sandy from Muskegon, MI, received the left lung of the same donor. Loretta tried, and suffered side effects from, a series of drugs. She was encouraged to exercise. At the end of April, Loretta did what any self-respecting girl given a new lease on life would do. She went to a mall.
Soon after, Loretta’s lung became infected. Sy emailed friends: “My honey has been given a chance to live. We WILL keep the faith.” Day 8 post transplant, Loretta’s body began rejecting the organ. She received high doses of steroids. Fatigue and fluid retention and emotional and blood sugar swings followed. New drugs were tested. Lung bronchoscoped. One inhaled drug: $4,000. But in June they took their grandsons to the zoo.
After 3 months in Cleveland, they returned home to West Bloomfield, MI. 9 months post-surgery, Sy reported to friends, “Believe it or not we still love each other and are still speaking—most of the time.”
On June 4, 2010, Loretta emailed friends: “I am home.”
Not for long. Shortness of breath, chest pain, headaches, fevers, other infections, a blood clot, returns to CCF would follow in weeks to come. Still, they celebrated their 51st anniversary in Cleveland on June 24. When the hospital heard about the occasion, they organized a surprise luncheon. It was covered by the ABC affiliate and shown on the 6pm news. (www.newsnet15.com)
A year post transplant, Sy wrote, “Looking back, I’m uncertain as to how we survived all the ‘Oops!’ we were forced to deal with that first year. It was more than tenacity. We couldn’t give up or give in. And it was about ‘we.’ No one can do this alone.”
Sy continues to play Loretta’s professional nudge. Exercise! Take your pills! What did you eat? He has done so for the last 6 years. Years in which they celebrated granddughter Thea’s bat mitzvah (at age 12 as Grandma was afraid she wouldn’t make it to her 13th), granddaughter Melanie’s graduation from the Ross business school, Sam and Evan’s becoming Eagle Scouts, grandson Steven’s engagement (wedding this summer), both of their 75th birthdays. “And many more days we wouldn’t have shared without this gift of life.” A young opera singer who had both lungs replaced by Loretta’s surgeon came to see her and serenaded her with “She could have danced all night.”
The Ziegelmans are spending the winter in Sarasota. They’ve built a relationship with the transplant team of Tampa General Hospital. Loretta continues to face, and overcome, challenges. A recent bout of pneumonia left her once again needing oxygen.
But, as Sy says, “We lie low. We’re together. It’s okay.”
Sy wrote an extensive and sensitive journal about their medical journey. In his journal, he expresses appreciation for the Hebrew schecheyanu blessing. “Blessed are you, Lord our God, sovereign of the universe who has kept us alive, sustained us, and enabled us to reach this season.”
Thanks, Sy and Loretta, for sharing this hopeful story. May you continue to reach many more seasons.
(And thanks, Norine Zimmer, for suggesting I contact Sy.)