Project Echo - CKD Hub Committee Member
Erich Ditschman is an advocate and peer mentor for kidney patients. He is a member of the National Kidney Foundation’s Kidney Advocacy Committee. In 2018, Erich co-chaired NKF’s KDOQI Home Dialysis Controversies Conference. He is a member of NKF’s Policy Committee and has been active on patient centered outcomes research projects and Project Echo for home dialysis. He is the only patient member of the National Kidney Foundation of Michigan’s Morris Hood III Chronic Kidney Disease and Covid-19 Complications Prevention Initiative Advisory Committee.
A year after his diagnosis of End Stage Kidney Disease (ESKD) he joined NKFM Kidney Walks (2002) with his team, The Riverdudes, and has been raising funds and educating about kidney disease ever since. He has spent hundreds of hours talking to in-center dialysis patients about how they are doing, sharing his story, and discussing home dialysis options, kidney transplant, and palliative care. Early on he and a friend started a home hemodialysis listserve which later became Home Dialyzors United.
Last year he testified before of the Michigan House Public Health Committee on the proposed state Living Donor Protection Act. Earlier this year, he and his wife and living donor, Andria, were with Governor Gretchen Whitmer when she signed the Michigan Living Donor Protection Act.
Erich has been on home hemodialysis since 2001 and is passionate about the benefits of home dialysis and its positive impact on lifestyle and mortality risk. He has been using nocturnal home hemodialysis since 2008 with a compact and transportable machine.
His chronic kidney disease was identified in 1981 when he was eighteen years old. He had fifty percent use of his kidneys for the next twenty years, but that didn’t slow him down. He and his high school sweetheart, Andria, went to college and married after graduation. They had an active life including skiing, hiking, canoeing, and even back packing the Grand Canyon. After receiving a masters degree in water resources science, Erich went to work protecting and restoring Michigan rivers, lakes, and wetlands. Andria received a law degree and worked in the courts. In 1999 they moved to East Lansing, MI where Erich worked at an international consulting firm while finishing a doctorate program. After adopting their their newborn son, Jacob, Drea stayed home.
Then in 2000, Erich lost the remaining use of his kidneys in four months and crashed into dialysis. Andria was tested and was a match for a kidney transplant. Erich did in-center hemodialysis until Andria gave him the gift-of-life, one of her kidneys in the spring of 2001. The kidney only worked briefly and soon shut down. It turned out to be a relatively unknown disease called focal segmental glomerulosclerosis (FSGS). He went back on dialysis.
Soon, they helped to restart the University of Michigan’s home hemodialysis program. At the time the only technology available for home hemodialysis was a full-sized machine and a reverse osmosis system for water purification. Andria became Erich’s care partner. She would juggle the household, the needs of two year old Jacob, prepare dinner, and set up and later clean the dialysis machine. Erich would get home from work, see Jake, and get on dialysis for a three hour run. Andria would cannulate his needles into his fistula. They did this four to five times a week. Erich got stronger and was able to maintain his busy schedule of running projects throughout Michigan and writing proposals to expand into Ohio. He had to put the doctoral program on hold. After the waiting period expired Erich started to receive Medicare due to end stage kidney disease.
Eventually, Erich realized the burden that this type of dialysis was having on Andria, and decided to switched to peritoneal dialysis (PD). With PD he was able to set up his machine, connect himself and to the new catheter in his abdomen. He became independent which
Updated 2/22/24 Erich Ditschman
bolstered his confidence. Despite this new found strength, Erich still had to deal with the symptoms of anemia. Eventually he could no longer work full time and had to start federal disability. Andria went to work at a law firm.
Andria and Erich adopted their newborn daughter, Antonia. Erich ran at night and did some daily exchanges seven days a week until 2005 he was called to receive a deceased donor kidney at the University of Wisconsin. The FSGS reoccurred in the new kidney. When Erich came home he went back to in-center dialysis. A year later he learned about a small seventy- pound portable dialysis machine for the home that was portable, and he asked his nephrologist about switching. They loved to travel. She was on board and while both he and Andria were trained to use it, Erich wanted to continue to maintain his independence with Andria being his back up. He learned to cannulate his fistula and dialyzed two and a half hours a day six days week. Two years later he switched to using the machine overnight. For the past sixteen years Erich has dialyzed eight and half hours a night for five nights a week. Nocturnal home hemodialysis has the same mortality risk as a deceased donor kidney.
As an environmental scientist his career focused on protecting and restoring water resources throughout Michigan. To celebrate his tenth year on dialysis (2010), he paddled the Grand River, Michigan’s longest river at 250 miles over 10 days, to raise money for kidney research, education, and to show that one can be active using home hemodialysis. He dialyzed each night along the way. He is involved with focal segmental glomerulsclerosis research, as a consumer reviewer for the Department of Defense Congressionally Targeted Research Programs.
He is the 2020 Recipient of the National Kidney Foundation's Celeste Castillo Lee Patient Engagement Award for patient advocacy. And, he received the Dialysis Patient Citizens Hero Award in 2008. Erich has published numerous articles on living well on dialysis, including works on intimacy. He speaks at professional and patient-centered symposium and conferences. He consults on the development of new tools and medicines to support home hemodialysis patients. And, he continues to visit patients in-center throughout the midwest to provide education on home dialysis options and kidney transplants.
