My Triumphant Journey as a Documentary Film Maker (Despite Kidney Disease) EasyLink Access #: 120
By Zach Richter  While quickly approaching my 25th year on dialysis, I wanted to write this article to let other chronic kidney disease (CKD) patients know that there is life after renal failure. While everyone is different, a person who follows an optimal dialysis prescription, controls his or her diet, and finds time to exercise can have a pretty good life, despite CKD. I began in-center hemodialysis (HD) in March 1982 and have continued with that therapy up to the present. No transplant. Not even on the list... Not yet, anyway. Global Dialysis Being on HD four and a half hours a day, three days a week, does take a chunk of my time. I have jokingly referred to it as a “part-time job.” My dialysis tour of duty, however, has not stopped me from my full-time job and passion--working as an independent producer/director of documentaries for national public television (PBS). As a broadcast journalist, I have had the opportunity to travel, not only around the U.S. but also around the world. I've dialyzed in cities such as Austin, TX, La Jolla, CA, Sarasota, FL, and St. Louis, MO, as well as in such countries as Germany, Great Britain, Hong Kong, The Netherlands, the Philippines, and Switzerland. A Life-Changing Diagnosis It was while I attended New York University's School of the Arts that I noticed something wrong with my health. I suffered from edema (swelling) in my legs throughout my junior and senior years. But it wasn't until after I graduated that I learned of my illness. I began working at ABC News in September 1980 as a clerk in the business office of Nightline. In April 1981, I had a kidney biopsy done, and the diagnosis was membranoproliferative glomerulonephritis. A month later, I had surgery for placement of the arteriovenous fistula in my left wrist and arm. Those two short hospitalizations within a month of each other caused my boss to worry that I would be missing work due to my illness, so he asked me to leave at the end of June.  Beginning Dialysis Almost 10 months passed before I would start in-center HD at the Rogosin Institute, affiliated with The New York Hospital. At first, I dialyzed five hours a day, three days a week. During this time I was feeling rundown and tired. I was also experiencing peripheral neuropathy in my legs, which came about very quickly and dramatically. When I was at home and on the floor exercising, I couldn't just stand up after finishing. I would have to drag myself to a chair and pull myself up. When I was outside walking, it was difficult for me to step up onto the sidewalk after crossing the street. I would have to walk to a nearby lamppost so I could grab onto it and give myself a boost up. The author dialyzes at the Rogosin Institute. John Sullivan, MD, my nephrologist as well as the director of the dialysis center, was very concerned about the neuropathy in my legs, which was not improving. In fact, it seemed to be spreading to my fingers. Dr. Sullivan came across information about a new type of dialysis filter (dialyzer) that could help reduce neuropathy, and so he convinced the higher-ups at Rogosin to acquire both the filters and the machinery necessary to use them with the current dialysis machines. Exercise and Second Opinions After many months, the neuropathy slowly started to recede, and I began to regain my general strength. I started exercising again, which I had stopped when I first began dialysis because I was always fatigued. Initially, I used a stationary bicycle, first for 10 minutes at a time, and then slowly building up to 35 minutes. When I felt ready, I rejoined my local gym and began a weight-resistance program on my non-dialysis days. Just a note about second opinions: It's always important to get them! Before I met Dr. Sullivan, my original nephrologist said I wouldn't be able to handle dialysis and therefore must have a transplant. He also said I should stop my regular exercising and take up chess instead. It was Dr. Sullivan who encouraged me to continue to exercise and take dialysis one day at a time. He also suggested that I dialyze at Rogosin's self-care unit, saying that patients who knew more about their illness and took part in their treatment tended to live longer. Pursuing My CERTain Dream During this time, I decided that I wanted to try pursuing my dream of producing public television documentaries. After conducting some research, I found that I would need to form a not-for-profit production company so that I could approach private foundations to fund the productions. After wading through a lot of paperwork and conferring with an attorney and the local IRS office, my production company--the Corporation for Educational Radio and Television (CERT--was founded in January 1984. As I tried to raise money for a couple of ideas for documentaries, I worked at different jobs unrelated to television production. One was a stint at the South Street Seaport Museum, and the other was a job "pasting-up" local newspapers for a printing company. I was dialyzing on the early morning shift at Rogosin, from 5 a.m.-10 a.m.,so I could go to work afterwards. (Around 3 p.m., however, I would get a bit "punchy.") Then, in 1986 I got a call from a friend of mine at NBC Radio who wanted to know if I could co-produce/direct a documentary with him for NBC Television. The production was to be part of NBC's commitment to religious programming, and the documentary was to be produced in association with the United States Catholic Conference (USCC). I jumped at the chance! "Beyond the Dream" After about a year of contract negotiations with the USCC, we closed the deal and I began working on my first network documentary. The topic was immigration, and our documentary looked at German, Irish, and Italian Catholics who immigrated to the U.S. from 1846 to 1924. It was entitled, "Beyond the Dream: Immigrants in America." To help make this first documentary a success, we enlisted a number of celebrities to introduce various parts of the story. The actors were paid what is called "scale"--about $600 a day (back in 1987). We hired Susan Sullivan and Kevin McCarthy (star of the original sci-fi cult classic, Invasion of the Body Snatchers) to tell the Irish story; Elke Summers (movie star) and Elaine Stritch (Broadway veteran) to tell the German story; and comedian Dom DeLuise and boxer Ray "Boom Boom" Mancini (Lightweight World Champion) to tell the Italian story.  Most of the videotaping of "Beyond the Dream" was conducted in New York City, so I didn't have any trouble with my dialysis schedule. I tried to do the taping on my non-dialysis days so that I would have a full day to work. "China at the Crossroads" My second documentary project continued the co-production deal with the USCC, this time for ABC Television. Our new documentary would look at the Catholic Church in China and was entitled, "China at the Crossroads." Until that time I had dialyzed in several cities around the U.S., but now this would be my first extended travel outside the country. It was a new challenge. Through the American Association of Kidney Patients (AAKP), I met a travel agent who helped make my treatment arrangements in Hong Kong and Shanghai. Zach confers with Broadway veteran Elaine Stritch. Hong Kong Dialysis The documentary production crew would travel to Hong Kong first, then fly north to Shanghai for two weeks of filming. Since our flight from New York to Hong Kong was more than 18 hours long, my plan was to dialyze once in Hong Kong and then follow the crew up to Shanghai, where arrangements had been made for me to dialyze at a local hospital.  After dialysis Monday morning in Hong Kong, I took a flight to Shanghai. While Hong Kong was a major modern city, Shanghai was very run down, looking like something stuck in a 1950s time warp. Because of this, I decided to check out the hospital the morning before my Wednesday dialysis appointment. When I arrived, the Chinese nephrologist would not allow me to see the dialysis machine and filter I would be using the following day."Thank you very much," I said to him, "but I will not be needing your services." The author "kids" around in China. A Pearl River Race to Dialyze I joined the camera crew, which was already busy filming at different locations around the city. We worked on a few scenes together on Tuesday. Then I headed to the airport to fly back to Hong Kong for dialysis the next day. Well, that was easier said than done! After arriving at the airport, I found out that all the flights to Hong Kong were full until the following week! After putting my name on a waiting list, I returned to the hotel. I knew that I would need to severely limit my food and water intake since I was missing a dialysis treatment. The hotel sent one of its staff members to the airport to wait for an opening flight. Wednesday came and went... with no seats available. On Thursday, we changed our strategy and booked a flight to Guangzhou in southern China. At the Guangzhou airport, I was able to somehow communicate with a young Chinese man in a pickup truck to drive me to a boat that would take me to Hong Kong. After a two-hour hovercraft ride down the Pearl River, I arrived in Hong Kong at about midnight, and received dialysis the following (Friday) morning. That was quite an adventure! Three Down, Many More to Go! I continued working with my co-producer and the USCC on a third documentary, which looked at the history of the Church and Native Americans. It was called "The Circle and the Spirit" and would be broadcast on NBC Television in 1990. Now, with three documentaries under my belt, it was time to move on and produce my own films. That meant coming up with an idea and research/writing a proposal, raising funds for the production, and then filming it, editing it, and getting it on PBS. I would hire a camera crew, associate producer, and editor to help me on my productions. On February 13, 1992, almost 10 years after I began HD, my first national prime time PBS documentary, "Black American Conservatism: An Exploration of Ideas," was aired. This also marked the first documentary I would work on with Clarence Page, the Pulitzer Prize-winning syndicated columnist for the Chicago Tribune. He served as reporter and writer for that documentary. Education and Urban Renewal  I have since produced six more PBS documentaries, all of which have been reported by Mr. Page. Three were about urban renewal issues, and three tackled education reform. Currently, we have two projects in the works: one is about organizations teaching at-risk youth entrepreneurship, and the other studies home ownership as a means to build assets for low-income families. I love what I do, even though the constant fundraising can be frustrating and makes production unpredictable. Overall, I'm both fortunate and lucky. Richter is "up in the air" with his photographer, Naftali Larish. Conclusion A great source of information and inspiration for me has come from the AAKP. Because of that organization, I've learned a great deal about my illness and its treatment. Through its annual convention, I've met dozens of other HD and transplant patients from across the country as well as some wonderful dietitians and nephrologists. The best advice I ever received came from the late Peter Lundin, MD, who, as a former president of AAKP, was both a patient and nephrologist: "The kidney patient who lives the longest is the one who gives the ulcers, not gets them." About the Author Zach Richter lives in New York City. For more information about CERT and Zach's most recent documentary, "Closing the Achievement Gap," log on to www.pbs.org/closingtheachievementgap. Last Updated April 2007 The information on KidneyTimes.com is provided for general information purposes only. Always consult with your healthcare team before making any changes to your healthcare or nutrition regime.
KidneyTimes.com is a program of Renal Suppot Network. |