Natacha Friedman (in bed) and Corina Nelsen
Is it possible that a note posted deep in the woods of a music festival and a torrential rain combined to save the life of a Ridgefielder? Read on.
Natacha Friedman, a kidney patient from Ridgefield, had been fighting for her life for 32 years and it looked like she was about to lose the battle. Her kidney was failing and her long wait for a transplant was not yielding the results needed. The situation was grim. She needed a solution if she was going to survive.
Her fight with cancer started many years back. As a teenager in 1984 she suddenly became ill, but doctors couldn’t find any explanation for her rapidly declining health until a nascent technology, an ultrasound, was used, revealing she had renal cell carcinoma, a rare form of kidney cancer. The only chance for her survival was removal of the entire right kidney and more than half of her left kidney. The operation was a success and she lived with what remained of her left kidney for more than three decades.
She was vigilant about taking care of herself and adopted a low-stress lifestyle, changed her diet to support optimal kidney function, took up yoga and meditation, and maintained regular monitoring of her kidney function with her doctors. Her goal was to avoid dialysis and enjoy the best possible health she could for as long as she could.
In 2010, her kidney function had declined and her creatinine level rose high enough to qualify her for transplant. Because neither her brother nor her mother were able to donate due to pre-existing conditions, Natacha was placed on the UNOS kidney transplant waiting list, along with more than 100,000 other Americans.
A miracle unfolds
By the spring of 2015, she had been on the kidney transplant list for more than five years. Despite her extensive efforts, Natacha’s strength started to slip away. She couldn’t do yoga anymore and the need for a new kidney was becoming dire. Up until this point, Natacha and her life partner, Barbara Simkins, didn’t talk to others about the health challenges Natacha faced.
The scales started to tip in Natacha’s favor one spring evening when at a cocktail party, she overheard a conversation about “altruistic kidney donation.” She learned that kidney patients waiting for transplant could receive a healthy kidney from a living donor, even if that donor was not related to the patient. As long as the blood type and tissues were a match, an altruistic donation is possible, surprisingly simple and safe for the donor. A donor’s remaining kidney tends to grow larger and stronger to compensate for the lost kidney.
And for the recipient, a kidney from a living donor is appreciably better for the recipient than a deceased donor’s kidney.
They learned all they could about altruistic donation.
In June 2015, Barbara told Natacha’s story in a Facebook post and asked friends to spread the word. They hoped that through social media, they might accelerate the search for a live altruistic donor.
Jeri Lollini and Barbara Bitsas saw the Facebook post and were devastated to hear about Natacha’s failing health. Lollini and Bitsas had met Natacha and Barbara when they were searching for a place to get married. In 2013, same-sex marriage was not yet legal in their home state of Pennsylvania. They learned Barbara and Natacha performed many same-sex marriages at Green Rocks, the inn they own and operate in Ridgefield. Lollini and Bitsas were married at Green Rocks Inn on Dec. 31, 2013. After reading the post, the two women were determined to help, but were not certain how.
The 40th Michigan’s Womyn’s Music Festival was Aug. 4 where 6,000-plus women gather deep in the Michigan woodlands for a celebration of women, music, art, culture, and life. Lollini and Bitsas were there.
There’s no Internet or cell signal in the remote Michigan woods, but there was a giant bulletin board that served as the main source of communication. It was located at the juncture of three main paths at the music festival. Lollini hoped that if she posted a note about Natacha’s need for a kidney, maybe Natacha would find a donor. To do this, she and Bitsas had to hike two miles to the entrance of the nature preserve where MichFest was held in order to get a strong enough cell signal to call Barbara Simkins. Lollini and Bitsas needed Barbara’s OK to post the note and confirmation of Natacha’s blood type.
Despite a very spotty signal, the two women reached Barbara, got her approval and found out that Natacha’s blood type is O. They then had to hike back to the bulletin board, find paper and pen, and create their message. Finally, after almost an entire day’s heartfelt effort, Lollini and Bitsas posted their note in the center of that bulletin board in the hope it might lead to a donor for Natacha.
The note posted at MichFest that day ultimately saved Natacha Friedman’s life.
Less than 24 hours after Lollini and Bitsas posted the note at MichFest, a huge rainstorm unleashed a downpour. Lollini was certain the heavy rain destroyed the note. She felt her enormous effort to get that note posted was wasted. Both women were crestfallen.
But thanks to some quick-thinking MichFest organizers, the bulletin board that was the communications lifeblood of MichFest was covered with a clear tarp and every message was preserved.
The rain was also a catalyst for Corina and Amanda Nelsen, residents of Holland, Mich., to take a different route back to their campsite to zip up their tent before it floated away. That route took them by the bulletin board, a spot neither one of them had seen before. Corina was in training for a body building competition and she wanted to stop to see if there were any other athletes at MichFest who were training during the weeklong festival. Lollini and Bitsas’ note caught her eye. She saw that there was a need for a donor with type O blood. Corina donates blood regularly, is on the bone marrow donation registry and is a designated organ donor should she die. She took a photo of the note with her phone and ran back to her campsite with her wife, Amanda, to secure the tent. She didn’t mention the kidney donation request on the bulletin board to Amanda, and the note didn’t cross her mind again until days later, after she had returned home. She was reviewing the photos from MichFest when Lollini and Bitsas’s note popped up. Corina read the note thoroughly and immediately reached out to Barbara Simkins.
After meeting Natacha, interviewing her, and talking to Barbara, Corina decided that she wanted to donate one of her kidneys to Natacha. She saw it as an opportunity.
Corina’s wife took a little longer to come around. Amanda worried about the effect it would have on Corina. Would it impact her health? Would it put her life in danger? Would there be any long-term impact?
All of Amanda’s questions were addressed and her fears were allayed when she and Corina flew to New York, spent time with Barbara and Natacha in Ridgefield, and met with the entire organ donor transplant medical team at New York-Presbyterian/Weill Cornell Medical Center.
“Meeting Natacha and Barbara, and recognizing that Corina’s kidney donation would save the life of a remarkable woman, made me a full supporter,” said Amanda. “In fact, it made me want to do this for someone if the opportunity ever arose.”
The team at the medical center also gave Amanda the confidence needed to support her wife’s kidney donation.
Two days before Thanksgiving, the news came that Corina and Natacha were a perfect match, and that the transplant was approved and scheduled for Jan. 19.
Transplant surgery was a success for donor and recipient.
Both Natacha and Corina are currently recovering and both are doing very well.
And Natacha and Barbara, along with Corina and Amanda, have dedicated themselves to spreading the word.
More information about altruistic kidney donation is available from medical doctors and the National Kidney Foundation, kidney.org, or from Heidi Yeranossian, 203-733-8665 or heidi@madisononmain.com.
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