I knew Dori Schatell through Home Dialysis Central (HDC). She was the one who managed the website. When I was switching to home hemodialysis about 20 years ago in 2006, I could not find much information about this modality and it was disconcerting to not find anyone in India on daily nocturnal home hemodialysis. There were people on conventional twice-weekly or thrice-weekly home hemodialysis but no one on nocturnal dialysis.
So, HDC was my source of all information on nocturnal home dialysis. There was a support group like the internet forums of those days where you posted questions and people would answer. The advantage of forums over Facebook Groups (as Dr. John Agar would repeatedly point out) was that it was much easier to search for older questions that others have posted to see if your question was already answered.
Most of what I learnt about nocturnal home dialysis was on HDC. Folks there were a very close-knit community, a family, that went out of their way to help people they had never met, people half way around the world from very disparate backgrounds and circumstances, all bound by one common thread - the urge for more freedom in their journey with kidney failure. All thanks to Dori Schatell.
Dori went on to create a Facebook Group for HDC which became hugely popular among those looking for information and support in their home dialysis journey.
I had the privilege of working closely with Dori (along with another passionate patient advocate, Paul Bennett) in a working group that wrote a peer-reviewed journal manuscript on the Psychosocial aspects of Home Hemodialysis. We three met in 2015 in Chicago as part of the Global Forum for Home Hemodialysis - a group of doctors, nurses and patient advocates who worked on improving awareness and access about home dialysis.
I remember her objecting to the use of the phrase 'non-compliant patient' and she would say what people call non-compliance is truly the care team's problem and they are not measuring up to what the patient needs!
I used to reach out to her by email or a post on the Facebook HDC group for problems I was having with my home dialysis and she would promptly respond. Her book, "Core Curriculum for the Dialysis Technicians" is brilliantly written and emphasis keeping the patient at the centre of the universe, something that NephroPlus truly espouses.
I will truly miss Dori.
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