Helen Schwarz of Tallahassee Fl. always knew that polycystic kidney disease (PKD) ran in the family. Her brother and sister both had the disease, and she was well aware of the terms “dialysis” and “transplant.”
In her 30s, she began to have the same symptoms her siblings had: she was constantly bloated and had a nagging discomfort in her abdomen. Results from an MRI confirmed she had PKD. Unlike her siblings, Helen learned that her liver and ovaries were also covered in cysts. And unlike her siblings, Helen had three brain aneurisms caused by PKD that required clipping twelve years ago.
Because the cysts developed and multiplied slowly over the course of her life, Helen didn’t realize how large (or how numerous) they really were. She started realizing she had to take action when a stranger mistook her for being pregnant; her cystic organs had grown to nearly ten times their normal size. And when her creatinine levels spiked and her kidneys went into failure, she knew she couldn’t ignore her condition any longer.
Helen before her transplants
Her boss at the time, executive editor for the Tallahassee Democrat, knew that the traditional transplant waiting list would be too long and that her only hope was to find a living donor. When Helen’s husband was not a match, her boss tried everything to find a donor. He wrote a blog for the newspaper and it was posted on the Tallahassee Democrat’s Facebook page. People started responding in droves. Helen also created a “Helen Needs a Kidney Donor” website that told her story in hopes of finding a donor.
Six months into the search for a donor, the UMMC transplant team called Helen—they had a donor. He saw Helen’s post on Facebook and came to Baltimore at his own expense to get tested.
In November of 2013, at the age of 60, Helen underwent a simultaneous bilateral nephrectomy and transplant, removing the two cystic kidneys and replacing them with her donor’s kidney. Despite being covered in cysts, her liver was functioning well and was not removed.
“Ideally, we would replace the kidneys and liver at the same time, but Helen did not have a living liver donor,” said Dr. Stephen Bartlett, who performed the surgery.
The surgery was successful, but after three months, Helen was still not feeling any better. Her liver, which at that point weighed a staggering 12 pounds, was so large that it was crushing the newly transplanted kidney. When she came back to UMMC for her routine checkup, Dr. Bartlett admitted her immediately and drained 1.5 liters of fluid from her stomach. She had gotten so sick that if she left the hospital, she would go into hospice.
“I just took a man’s kidney and now I’m killing it with my own body,” Helen said.
Helen decided to spend time with her family instead of living out her days in the hospital. Her husband caught a flight home to Florida in the morning and she planned to follow a few days later. That same morning, as she was about to eat breakfast, a nurse ran into her room shouting “NPO,” and the team started prepping her for surgery.
Dr. Rolf Barth had found Helen a liver.
Because the liver donor was outside of the normal age criteria, 60 transplant centers had already refused the liver. But Dr. Barth knew that this liver would work for Helen. After he harvested the organ himself, he came back to UMMC to perform the surgery. Helen only had time to leave a message on her husband’s voicemail, “In case I don’t make it, goodbye, I love you.”
Helen’s liver transplant was a success as well, and she awoke to her husband and daughter looking down at her—when they heard she was in surgery, they rushed to be with her in Baltimore.
Unfortunately, Helen’s post-transplant story was marked with additional health problems. There were some complications after the transplant including excessive scar tissue causing a blocked bowel, hernias and viral infections. But she considers herself lucky to have the ability to face these issues head-on.
Helen after her transplants
Now, almost three years later, Helen is able to take better care of herself and her family. She eats a balanced diet, exercises regularly and always takes her medication. She enjoys spending time with her grandchildren, and also volunteers with her local church.
She treats every day as a blessing, and is very thankful to the transplant team at UMMC who took a chance on her.
“You were going to die,” Dr. Barth told her.
“I can’t believe that 60 people could have already died because their doctors said no to the liver.”
Helen urges anyone who needs a kidney or liver to find a living donor, and for everyone who has healthy organs to consider becoming a living donor.
“Have faith that you’re helping someone in desperate need. There are so many people waiting, and you could help one of them now.”