Jim Myers Interviews Waitlist Zero Director Elaine Perlman

Elaine Perlman is a living kidney donor and a tireless advocate for kidney health. As the Director of Waitlist Zero, she has led numerous campaigns advocating for the reimbursement of living donors for their costs and lost wages. Her commitment to the cause extends further with her role as a mentor for the National Kidney Donation Organization (NKDO) and her membership in the National Kidney Foundation's Kidney Advocacy Committee (KAC).

Elaine's passion for organ donation and kidney health is evident in her founding of several organizations including the New York City One Kidney Club, Kidneys 4 Strangers, and Vegan Kidney Donors. She also serves as a mentor for Plant Powered Metro New York, reflecting her dedication to promoting plant-based nutrition for kidney health.

Before her work in kidney advocacy, Elaine had a long and distinguished career in education. She taught for 33 years in schools across the globe, from the American International School of Budapest to New York City public schools. She also served as a professor for graduate students at Teachers College, Columbia University from 2016 to 2022, where she taught a range of subjects to pre-K and 2nd-11th grade students.

Her leadership skills flourished in her role as the Director of the Columbia University Peace Corps Fellows Program. Here, she mentored and supervised 70 Jaffe Peace Corps Fellows in their first two years of teaching in NYC public schools, also contributing to the community by painting 11 school murals. To foster intellectual dialogue and collaboration, Elaine founded a college-wide monthly salon, an interdepartmental exchange of ideas.

As an administrator, Elaine was a Dean and a Director of Admissions at Columbia Grammar & Preparatory School and served as a parent advisor for the Parents League. She taught middle school enrichment classes at the Harlem Educational Activities Fund and was a public school nutrition specialist, focusing on nutrition education for 2nd-5th graders in the South Bronx, Crown Heights, and Harlem for the Coalition for Healthy School Food.

Elaine's educational background is as impressive as her career. She earned her Bachelor of Arts in English and economics from Wesleyan University, a Master of Arts in curriculum and teaching from Teachers College, Columbia University, and a degree in school administration from Shippensburg State University. Elaine is certified to teach nursery, kindergarten, grades 1-6, and English 7-12.

Elaine has also made significant contributions to curriculum development. Her work, "Exploring the Harlem Renaissance and the Italian Renaissance Periods Through Radio Plays," was published by Columbia University. She has shared her innovative ideas about education at several conferences, including Teaching in Trying Times, Reimagining Education, the Winter Roundtable, and the Peace Corps Coverdell Directors Conference in Washington DC.

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Video

Jim's interview with Elaine can be viewed here.

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Podcast

Jim's interview can heard in this podcast.

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About Elaine Perlman

Elaine Perlman is a prominent figure in kidney health advocacy and a respected educator with a diverse background. She has dedicated her life to making a significant difference both in and out of the classroom. As a living kidney donor, Elaine has first-hand experience with the challenges and rewards of organ donation, leading her to become the Director of Waitlist Zero, where she advocates for the rights and support of living donors. Her passionate commitment to kidney health has also seen her establish several organizations, including the New York City One Kidney Club and Kidneys 4 Strangers. Elaine's educational career spans over three decades, teaching in various schools worldwide and at Teachers College, Columbia University. Furthermore, she has held administrative roles and significantly contributed to curriculum development. Tonight, she will enlighten us with her remarkable journey as a kidney donor, advocate, and educator.

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‍About Jim Myers

My name is Jim Myers. I have been fighting PKD/kidney disease for nearly 40 years. I currently live in Hammond, Ind. My mother and father ran a couple of grocery stores in my hometown, Cedar Lake, Ind. My dad was afflicted with polycystic kidney disease. On his side of the family, four other people died from PKD. I’ve lost five members of my family to PKD.

I was diagnosed with PKD when I was 25 years old. I went into my local hospital with what I thought were chest pains. From a simple x-ray, my family doctor was able to diagnose that I had multiple, visible cysts on my kidneys. He immediately referred me to nephrologists at Indiana University in Indianapolis for care and treatment. Under the guidance of Dr. Hellman, I learned that PKD was hereditary and had no cure, but the growth of the cysts could be slowed and controlled by high blood pressure medication and a renal diet. As a practicing lawyer and later a college professor, this frightened me at the time, so I tried very hard to follow the protocol and make all my follow up visits. I was able to stay off dialysis until the age of 58. Then I was on dialysis for four years before receiving a transplant in 2016. I nicknamed my kidney Woody, after my dad. Woodrow is a family name, and it has been every Jim’s middle name since my grandfather and continues today through my son.

Like all PKD, patients, I have had my ups and downs. I had days where I passed kidney stones uncontrollably, I have had anemia, cysts burst and back pain so bad I could not move. Until 2018, I had been hospitalized at a minimum twice a year with PKD-related complications. I was no longer able to continue in my profession. I lost my marriage and my home. Initially, I was very angry, bordering on rage. I watched my father die, and I was certain that this was my fate.

While I was on dialysis, I noticed that although I drove myself to and from treatments, most of my other clinic mates came to the center by ambulance and were moved to their chairs by gurney, wheelchairs, walkers or canes. At almost the same time, Central Management Services for Medicare began to send out notices of cuts to funds for dialysis centers. Cuts could mean some devastating things for myself and my clinic friends: loss of nurses, technicians, social workers and a close place to dialyze. I thought someone should do something. These people were too sick to fight back. I was one of the healthier guys, and with my background as trial lawyer, I slowly came to the conclusion that at least in our clinic, it would have to be me. This is how my kidney advocacy began.

I started a petition on change.org. I became very active on social media. I wrote over 100 letters to the editor on the subject and I joined as many major local and national kidney advocacy groups as I could, including the PKD Foundation. I wrote articles and blogs. I contacted my local and national politicians. I spoke to any group that would have me. I worked with other organizations and people to learn how to fight against political challenges leveled against the kidney community, which I continue to do to this very day. I have been very fortunate to have won awards for my advocacy.

I continue to be very active on social media. I post kidney-related matters almost every day on Facebook, Twitter, Instagram and Tumblr. I reach approximately 100,000 people every month. I run 60 Kidney Pages and 50 Kidney Group pages, as well as nine electronic newspapers and 10+ blog sites. I have lectured on the subject of using social media to advocate for our fellow kidney patients to many large groups and kidney organizations.

The advice that I would give to other PKD advocates is to play to your strengths. Use what you do best to raise awareness for PKD/kidney disease. If you speak well, write well, are musically inclined, research well, run a kidney related business well or any other talent you do well, that is your best avenue to produce great results for your advocacy. Use your gifts to help others. I’m a full time kidney advocate now. It is a decision that I do not regret. I highly recommend it. Questions? Don’t hesitate to contact me. My friends call me Uncle Jim.

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Patient Education Disclaimer

This material is for informational purposes only. It does not replace the advice or counsel of a doctor or health care professional. KidneyLuv makes every effort to provide information that is accurate and timely, but makes no guarantee in this regard. You should consult with, and rely only on the advice of, your physician or health care professional.

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