Chris Schroeder has been extraordinarily unlucky – and extraordinarily lucky. The 58-year-old Walnut Creek, California, resident grew up in a family where the specter of polycystic kidney disease, a disorder in which cysts form on the kidneys and eventually stop them from functioning, loomed large.
His mother had a kidney transplant in her late 60s, and her father died of hereditary disease at the age of 56. So from a young age, Schroeder was on the lookout for signs that he too would face similar challenges.
By the time he was in his early 40s, his kidney function was declining, but doctors thought he'd be able to go another three decades before needing a transplant. Unfortunately, around the time he was 50 things took a turn for the worse. In 2007, he underwent his first kidney transplant, thanks to an unlikely donor – his wife, Sonia.
While it's not unusual for loved ones to offer to be organ donors, the chances of his wife being a suitable match for Schroeder were slimmer than usual because Sonia is of Mexican descent and from a completely different gene pool than his. Schroeder tried talking his wife out of taking the tests, but she insisted. And against extremely steep odds, the couple turned out to be a match.
Within five years of the transplant, though, a rare condition developed that caused the new kidney to fail. Again, a member of Schroeder's family stepped forward to help – this time his 19-year-old son, Ezra, a student at Diablo Valley College. Under the supervision of UCSF Medical Center transplant surgeon Dr. Nancy Ascher, the father and son underwent simultaneous surgeries on December 18, 2014, at the UCSF Connie Frank Transplant Center.
What happened after you had the first transplant?
Things were all good for a while, but around the five-year mark, it became clear that something was causing this transplanted kidney to fail too. They did tons of testing at UCSF and eventually discovered that it was something called C1q nephropathy, a rare disease that just happened to be attacking the new kidney. It was a totally spontaneous thing – it wasn't something present in my "native" kidneys.
So I went on dialysis, which was grueling – I had to be hooked up to a machine for eight hours each night while it cleansed my blood using a reverse osmosis process called peritoneal dialysis, through a catheter implanted in my abdomen. I felt good in the morning, but by bedtime I felt really cruddy. By then my kidney function was below 10 percent, so I was also eligible to go back on the waiting list for another kidney transplant.
How did it come up that Ezra might become a donor?
He first brought it up to his mom, tentatively. And then we all talked about it as a family. Initially I cried. I had mixed feelings. Of course, I was immensely proud of him for offering to be a donor. But at the same time I was conflicted because it's one thing when your wife, who is 50, wants to do it for you – but another thing when your teenager wants to do this for you. It was a difficult decision. You want it, but it's your son. It was very emotional.
In terms of his health, we'd been monitoring his kidneys his whole life. The doctors would check him for cysts via ultrasound every five years, and he was always free and clear. But that didn't mean he was totally in the clear because there are three genes that can cause the symptoms, but may not be expressed until later in life. He decided to get tested, and after a very long, tense wait, it came back that he does not have the genetic markers for polycystic kidney disease. As a family we discussed the report and I asked Ezra what he wanted to do. He was concerned about how much it might hurt, but said that he had thought about it and wanted to go ahead with the donation.
How did you feel going into surgery?
I was nervous, but just like with my first transplant, I knew that the doctors at UCSF knew what they were doing. They pioneered the program over 30 years ago and UCSF is the number one live donor kidney transplant hospital in the world. I mean, I think they do over 600 kidney transplants a year. Kidney transplants, while not a minor procedure, aren't experimental, either.
How was the recovery?
My recovery was not without setbacks. I left the hospital on Christmas Eve (Ezra was discharged two days earlier). But two days later, as a side effect of the pain medication, my large intestine shut down, and so I went back in for another four days so they could get it under control. I came home on New Year's Eve, but three days later the same symptoms came back. This time it was a kink in my small intestine – and even more painful.
After my fifth day in the hospital, they got things moving again. They really wanted to avoid having to open me up again to do intestinal surgery, especially because my transplant surgery this second time had required a much bigger opening. Normally they just make a rather small, 4-inch-wide opening on the side of your pelvis, but because they also were going to remove my very enlarged, diseased kidneys when I got Ezra's, they had to open me up from my pelvis to my breastbone. My native kidneys were so gross – each weighed about three pounds and was covered with cysts.
Thankfully, everything with my intestines began to run smoothly after that point and I didn't need any more surgery.
How was it for Ezra?
For Ezra, it was harder than he imagined, actually – partly because he is such a young, fit person and they had to cut through all that super-strong pelvic muscle. I think he was surprised by the discomfort. I don't have as much muscle in that area so that wasn't as much of an issue for me or for my wife when she went through it. The surgery coincided with his winter school break so he was able to recover during that time and after about a month he was back playing basketball again.
What is your prognosis?
The fact that the kidney came from someone who is physically very close in body size and a 50 percent genetic match for me is great, my doctors say. And so far, things are going well. I'll have a biopsy every six months this first year and then as needed for maintenance. So long as I take care of myself overall with diet and exercise and don't do anything foolish, there is a good chance this kidney will last the rest of my life.
Overall, I am just amazed and grateful for all of this. For the fact that my wife was able to give me an organ first, and then, to have gotten a transplant from someone as young as Ezra, which is not common. The fact that he wanted to do it for me is incredible. I am so grateful that my wife and son were willing to go through all of that to give me something so precious.
