By Anna Bennett
In a familiar twist, as I write this, Bill and his dialysis machine are at 35,000 feet, flying from Chicago back home to Seattle. (If only his NxStage could qualify for frequent flyer miles...)
We are now marking out time in years, in the beginning it was in days, then weeks, then months and always numbers of hits. (Bill mentioned our shared obsession interest in stats)
Bill, Peter, Mel and I all have something in common that makes us part of an ever expanding exclusive club. Our native kidneys don't work, but we are not passive patients in this disease, we and many others are managing to live full and productive lives while treating our CKD. We are the Dialyzors 3.0 that Gary Peterson writes about in his article New Views "a new “type” of dialysis patient and related changes in patient care". As people learn that there are options in care, they and in some cases their caregivers are empowered and see a glimmer of hope for a future of living with CKD5 rather than dying with ESRD.
"CKD does not discriminate" thus, a man in Seattle, a physician in California, a woman in Australia and I in NYC, we all bring diverse CKD journeys, observations and perspectives to DSEN.
For every post, there are more questions:
What can we do to make optimal dialysis available to everyone that wants it?
What trends are good for the CKD community?
How to advocate and educate on every level, from Washington DC in the matter of health care policy and Medicare reimbursement specific to CKD, to our communities all over the world to slow the epidemics of hypertension and diabetes that are causing millions of kidneys to deteriorate unnecessarily.
And, to communicate - bringing together the far reaches of the dialysphere - from news sources to support networks, to individual blogs - this combined knowledge and experience is a modern case study of people living, coping and surviving with CKD in their own voices - making formidable inroads into bringing to the end-user therapies and procedures, no longer confined to medical journals and hidden high atop the ivory towers of academia.
In many cases, it is the dialyzor that brings their nephrologists/center's attention to the wonders of buttonholes or extended therapies - it is a hard sell, as doctors are not used to being advised by their patients, the medical profession is catching up - but we face obstacles like studies that say it is not economically feasible to roll out widespread extended therapy, when we know the truth: extended therapy saves lives, and we have the studies to back that up. We are the ones living in the trenches, fighting the CKD battle one post at a time.
For years, Bill has been engaged with his own health care, willing to try and "live the life he was meant to live" and then tell the story. According to Google and other internet search techniques I know he's made a mark for years by bringing internet access to his dialysis centers, bringing armchair travelers on journeys with him via his posts from the road (and racking up an impressive number of countries and locations that he has dialyzed in). He has organized community education events, chaired tables for fund raising, traveled to Washington to lobby for better Medicare reimbursement and now, by creating DSEN, Bill has filled a niche that in this past year has bridged legislation, history, news, opinion, medical breakthroughs and personal stories. Pretty impressive that when you consider he has done this (and more) for the past 18 years in between dialysis sessions and work.
I am proud to have a small part in this blog, and I look forward to the next year of tracking renal industry news and trends, in advocacy, reimbursement, politics and the provision of dialysis.
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