Meet Marni Luther

Marni’s Valentine's Day in 1989 was different from what she had envisioned. Normally a day spent in celebration of love, Marni spent the day sick with a bad case of both diarrhea and vomiting. It was on this day, at 19 years old, Marni learned she had Polycystic Kidney Disease (PKD).

For Marni, PKD was not an unknown. She grew up knowing her parents, uncle, and sister had all struggled with PKD.  Despite her family history, she never fully understood the impact of the disease. But she did fear PKD, having experienced the death of her mother, uncle, and grandfather from the disease. She feared that her life would be irreversibly connected to PKD, with every move dictated by its ever-looming presence. And unfortunately, her worries were confirmed when PKD altered her next few months with daily challenges, leading to concerns of her lifetime goal of having children and starting a family.

Marni’s determination to fight against PKD was shared with her sister Nanette, a fellow PKD patient, and her brother-in-law Rick, who was extremely knowledgeable about the disease through Nanette's experiences. Marni’s sister’s experience led Marni to Dr. Anjay Rastogi, the Clinical Chief of Nephrology at the UCLA David Geffen School of Medicine.

She first met Dr. Rastogi in 2014, which she describes as a moment that “brought a glimmer of hope amidst the darkness emitted from a disease that had ingrained itself within my family.” Following Dr. Rastogi's suggestion, Marni enrolled in the Jynarque clinical trial for Tolvaptan, which drastically improved her kidney function until she left the study in 2023. Despite Marni’s discontinuation of the study, Dr. Rastogi continued his care of Marni, seeking possible treatment options. Dr. Rastogi also focused on supporting both Marni and Nanette's families, understanding the important role they play, and fueling a friendship built on trust, care, and immense respect.

Since their relationship with Dr. Rastogi began in 2014, Marni, Nanette, and their families have consistently supported his vision for advancing the CORE Kidney program. As a dedicated advocacy community of donors, recipients, and patients, CORE brings together voices of diverse backgrounds to facilitate meaningful conversations, an important aspect that Marni says differentiates the program from others. For Marni, the main impact of Dr. Rastogi’s care has come through his emphasis on the importance of paying attention to established habits and lifestyle changes, which help keep kidney function under control, a factor not focused on by many physicians. Despite the challenges she currently faces with PKD, Dr. Rastogi has been instilling in her the independence of her own course of treatment. Demonstrating that healthcare isn’t a one-way street but a two-way conversation. His unwavering support and care are what have empowered her to continue doing what she considers most important: “living life the way I have always wanted to - living a happy life with my family and friends.”

If you are interested in becoming an organ donor, please complete the online health history at www.UCLAKidneyDonor.org or call (866) 672-5333 to initiate the transplant evaluation process.