It was during a routine physical sometime around 1960 that the then-teenage David Braunstein was alerted to the fact that something was not quite right with his kidneys. His urine contained a bit too much protein, doctors told him. But he was a young man without symptoms, and it wasn’t like he was given specific instructions about what he should and shouldn’t do in relation to the issue, so he didn’t give it much thought.
But about a quarter-century later a routine checkup revealed high levels of creatinine in Braunstein’s blood, and his physician sent him to a nephrologist. Braunstein was instructed to change his diet, and thus began a lifetime vigil of monitoring his blood.
Then came that day in September 2013, when during one of his bimonthly visits to the nephrologist, the gravity of his situation was made plain.
“The doctor said, ‘Can you bring your wife in? […] You’re going to have to think about what you’re going to do when your kidneys go,'” Braunstein recalls. His kidney function was down to 20%, he and wife Terry were told. “[…] They immediately put me on the wait list [for a kidney transplant], because they said, ‘You’re going to need it.'”
The Braunsteins were more pragmatic than fearful. They educated themselves about their options. They learned, for example, that location can be a major determiner of how long an individual must wait for an organ, with population-dense Los Angeles County having on of the longest wait time in the country.
But with a median wait time of over four years and over 100,000 people on the list nationwide, the best option, by far, would be to obtain a live organ from living donor. And so Terry wrote an open letter explaining David’s plight and put it out to the community.
Within 24 hours, Marco Schindelmann answered the call, despite the fact that he and David were acquainted little more than professionally, having worked together when Braunstein did some consulting work for the Arts Council of Long Beach, of which Schindelmann is president.
“A voice inside my head said, ‘You gotta do this,'” Schindelmann says. “I just wanted to make sure I knew what I was saying yes to. I wanted to go in with my eyes open, because [after committing] I didn’t want to suddenly back out.”
Schindelmann spent the next day reading up on kidney donation at the Mayo Clinic’s Website. He learned that generally kidney donors suffer no adverse long-term effects from the process (he already knew that only one kidney is necessary to live a normal life), and that the life expectancy of kidney donors was the same as that of non-donors.
One lingering concern was the possibility of a rise in blood pressure that would need to be permanently treated with medication—a prospect Schindelmann very much wanted to avoid—because high blood pressure can damage kidney function. But after a doctor told him it was reasonable to expect to avoid this eventuality so long as he maintained his healthy lifestyle, Schindelmann was all in.
But the pair was far from their mutually intended destination. First there was a battery of tests not only to determine whether Braunstein and Schindelmann were a physical match, but psychological tests to ensure that Schindelmann was in a proper state of mind to undertake such a mission. “How do you feel about an assault and battery being perpetrated on you that will permanently compromise your health,” Schindelmann recalls being asked by a doctor.
“He said to Marco, ‘You must be crazy to want to do this,’ relates Braunstein, who was in the room at the time. “We were like, ‘Is this guy a plant? Is this part of their way of flushing out the people who aren’t really up to it?'”
But Schindelmann appreciated such bluntness, another dose of which he received when he met with a friend of the Braunsteins who had donated a kidney to her husband.
“David said [to the donor], ‘Can you believe that they said’ and he repeated the ‘assault and battery’ thing,” Schindelmann says. “And she said, ‘Oh, I wish they would have told me that, because it’s that and even worse.’ She went into gory details about how horrible she felt. She said the first day or two you want to die, and for the next week you don’t feel like yourself. […] And then she had complications. A month later she had tremendous abdominal pain and had to go to the emergency room. […] You could see Terry get her Jewish-mother look on her face, like, ‘Oh my God, we’re putting you through this!’ and sort of wringing her hands.”
Braunstein admits he would have been unlikely to do what Schindelmann is doing were the tables turned, though he says that has a great deal to do with how ignorant he was about kidney donation prior his crisis.
“I didn’t know anything about it, anything,” he says. “[…] “I never thought about the fact that you need only one kidney to live. I didn’t know that people who donate kidneys live as long as everybody else. […] My first reaction [to the prospect of being a donor] would have been, ‘Hell no!’ My body part? [Laughs] I mean, give me a break.”
But not only was Schindelmann willing to donate a kidney directly to David: if they weren’t a match he was willing to donate his kidney into a pool so that David would be eligible for a live matching organ far sooner than if he were on the wait list without being part of the pool. And with his kidney function down to 11% by October 2014, he was running out of time.
“Marco said, ‘Don’t worry about it: you’re getting a kidney even if we don’t match,'” Braunstein says. “He was just terrific about it. Everything he’s done was to put me at rest. In his mind it was done, and he was going to make sure it was as easy as possible. Marco is a special guy. He has that combination of compassion and bravery. It takes both to do something like this. Everyone feels for you, but to do something…. And he won’t even let me buy him dinner! He’s a tough guy to be generous with. […] If Marco hadn’t volunteered, and I was set on getting a live organ, I would probably be in India right now.”
The transplant, originally scheduled for December, was delayed when doctors found that Braunstein needed bypass surgery to get his heart proper shape to receive a kidney. More waiting ensued when it was decided that the procedure would take place not at the Scripps Institute in San Diego, but closer to home at UCLA Medical Center, a switch that necessitated Braunstein and Schindelmann’s going through screening process all over again.
But again the results proved favorable, with the pair deemed a match, a scenario Schindelmann found more aesthetically and emotionally pleasing than if he donated to the kidney pool.
“Terry said, ‘You’re part of our family now,'” Schindelmann says. “This whole process feels more like a kidney adoption than a kidney transplant. I’ll feel comfortable with them incorporating me into their family because there will literally be a flesh-and-blood tie.”
Nonetheless, Schindelmann says that a phenomenon he was warned about is the possibility of being treated as a hero leading up to and immediately after the surgery, then being more or less forgotten in the longer term. That is especially common if the transplant doesn’t take, a situation in which the entire process will have been for naught.
But Schindelmann was not concerned about hero worship. Nor did he fear the slight possibility of dying on the operating table (a risk that comes with any such procedure). Nonetheless, he admitted to a level of low-grade fear concerning other slight possibilities, including cognitive impairment, and damage to his vocal cords than can result from intubation (Schindelmann is an opera singer/coach), and other losses of function.
Nonetheless, Schindelmann and Braunstein went under the knife on July 29, and the result was a bit anticlimactic. Schindelmann had what he calls “a degree of discomfort” upon awakening, but far less than he was expecting. He was discharged from the hospital a day early—as was Braunstein—and once at home in La Habra never took any of the pain medication he was prescribed. He even attended an Arts Council board meeting on August 3, not even five days removed from surgery.
On Braunstein’s end, the closest thing to drama has been what he labels as a shift in his spirituality, despite the fact that he’s not “spiritual” in the traditional sense.
“Being ‘blessed’ was never a word I used,” he says, his new kidney celebrating its first week in its new home by functioning at what doctors say is an impressive level. “[…] You don’t control your life. You control nothing about your future. You can plan it, you do the best job you can, but life happens. The fact that I’m surrounded by people who care and are willing to extend themselves—like Marco and my family and my friends—gave the term ‘being blessed’ meaning for me. […] I’ve really come to understand differently what others can do for you, and how you have to appreciate that. The world moves on, and if you don’t have a support system and friends that can step up for you, it’s a different world.”
And so it is for Marco Schindelmann and David Braunstein, each of whom has benefited from the process. The kidney donation itself may be the least of it. For all we know of the future, in the kidney may not take. But beyond mere blood and organs, we are mind and soul. By way of the generosity of one man and the gratitude of another are two among us forever changed, bonded by a reciprocal caring that no weakness of the flesh can touch.
To register to be an organ donor, go here.
(Photo credit: Samantha Smithstein)