Abstract:
My name is Bill Peckham. I have been a Medicare beneficiary since 1988 (LR Tx from oldest brother) and have used hemodialysis since 1990; home hemodialysis since 2001. I work as a sign maker, through the carpenters' union, in the tradeshow and hospitality industry. I volunteer in various ways to promote the optimal health, quality of life and independence of people who use dialysis. Including with my provider, Northwest Kidney Centers, where I am past trustee board chair and continue to serve in many ways; locally with the Kidney Research Institute, on their KRI Council; nationally on the expert stakeholder advisory group of a federally sponsored comparative effectiveness research project; with DOPPS, on their steering committee; for CMS as recently as the 2010 C-TEP looking for fluid management CPMs; through my blog, Dialysis from the Sharp End of the Needle and participation in the vibrant CKD online community. I've made many connections with people involved with the provision of dialysis, on both ends of the needle, and have had many discussions, over many years, concerning industry news and trends, in advocacy, reimbursement, politics regarding the provision of dialysis. Dialysis is my hobby; one I take seriously.
Narrative:
I currently lone dialyze while I sleep ~ five nights a week for 7 to 8 hours using the NxStage System One. Prior to switching to home overnight extended hemodialysis, I used short daily dialysis at home. From September 2001 to January 2007 I dialyzed at home for three to three and half hours, five or six evenings a week. I did this first in September 2001 with a B Braun Dialog machine with assistance from a helper. In August 2002, I trained and went home as a lone dialyzor, taking full responsibility for every aspect of my CKD treatment. At first I used the Aksys PHD. In August 2006 I trained to use NxStage System One while traveling in the US. In January 2007 I switched from the Aksys to using the NxStage full time. In 2007 I used the NxStage for 3 to 4 hours in the evening. In January 2008 I switched to extended dialysis, overnight. I have never looked back.
I earned dual BS Degrees in Accounting and Business/Marketing in 1985 from Central Washington University. After graduation, while looking for my first job, I was diagnosed with chronic kidney disease. I was diagnosed during the only four months in my life without health insurance.
Armed with the knowledge that I was facing major health issues, and unaware of any sort of Medicare coverage, I left in January 1987 on what was to be a six month adventure around the world: what I reckoned was my first and last foreign travel adventure. Starting in New Zealand I'd make my way to Isreal via Nepal and Europe. Instead my adventure culminated a bit over two months later with medical evacuation from Thailand.
After recovering, thanks Dr. Orme, I worked as a VISTA training people to teach adults to read. By spring 1988 I was too sick to work. In July 1988 I received a kidney from Jim my oldest brother, thanks Jim. After an initial bout of rejection the kidney seemed to be working well; in 1989 I reentered the workforce when I joined a yacht brokerage and charter company, bringing my own boats, a 34' CHB and 41' Chris Craft, to a small fleat. However, within a few months it was clear my graft was following the same path to CKD5 as my native kidneys in 1988.
In 1990 I reached the point where I needed to use dialysis. Three times a week incenter dialysis made operating boats impracticable; I ended my participation with Nautilus Yachts in early 1991. Boat travel no longer seemed like an option (happily 17 years later, I returned to charter), but all was not lost. Within months of starting dialysis I realized that vacation travel was an option. I found indulging my wanderlust co-morbidity offered escape from my dialysis routine both literally and figuratively.
After visiting Chicago for Christmas in 1990 I began combining visitor hemodialysis with travel - first throughout the United States and then, in 1995 with insurance gained from work through the carpenter's union, I was again exploring the world. Starting in the spring of 1995 with 23 days in Costa Rica I took trips each year across the globe reaching an apex in 1999 with a three month trip around the world, a trip which included African safaris and five weeks in the Australian tropics.
With the increased availability of internet access while traveling I became a correspondent bringing travelogues and photos of my foreign dialysis adventures to the dialysis community through postings to early internet resources including Globaldialysis.com and the listserv Dialysis Support. In 1997 Nephrology News & Issues published my first CKD industry magazine article, an account of my two month, four country, seven dialysis unit 1996 European tour. Other articles followed as travel continued. To date, I've dialyzed in 22 countries on five continents (and the list is still growing).
My service to the dialysis community has grown since December 1997, when I joined the trustee board of Northwest Kidney Centers, my dialysis provider. I also joined the board of the Northwest Kidney Centers Foundation which raises community support to advance NKC's mission (“to promote the optimal health, quality of life and independence of people with kidney disease, through patient care, education and research”). I served as NKC trustee board chair from May 2007 to September 2009. I am the first dialyzor to serve as board chair in the organization's illustrious history. I am now emeritus trustee but continues to serve on the NKC Foundation board, and various board committees.
I have developed a deep commitment to kidney research. I helped to found the Kidney Research Institute, a collaboration between Northwest Kidney Centers and UW School of Medicine; I serve on the Kidney Research Institute Council. I am a Dialysis Outcomes and Practice Patterns Study Steering Committee member and a member of the DOPPS Patient Centered Care and Quality of Life task force. In 2010 I joined the AHRQ DEcIDE ESRD Expert Stakeholder Advisory Group of the Johns Hopkins DEcIDE Comparative Effectiveness in ESRD Study.
In addition to my local advocacy and kidney research activities I have been and am still involved with the national kidney community on many levels: in 2010 a fluid weight management CMS Clinical Technical Expert Panel member, a Dialysis Facility Compare CMS Technical Expert Panel, CMS review of the Conditions for Coverage survey guidance, the Kidney Community Emergency Response Coalition, speaking engagements at industry events, articles, industry consulting and web interaction. Now with my blog Dialysis from the sharp end of the needle (DSEN) I continue to pursue my passion for improving the provision of dialysis for myself and people generally through knowledge, research and best practices.
My blog is read by people at all levels of the renal industry. DSEN is often linked to by the renal industry's busiest websites e.g. RenalWEB, NephrOnline, HDCN. I am understood to have a sophisticated clinical understanding of the dialysis process as well as a sophisticated understanding of the business of dialysis. During the 2009 comment period of the new "expanded bundle" ESRD PPS I helped rally ESRD beneficiaries to submit thoughtful and actionable comments. The final rule includes many changes that are in concert with my advocacy.
I continue to track industry news and trends, in advocacy, reimbursement, politics relating to the provision of dialysis with a particular focus on home hemodialysis modalities, reimbursement and rehabilitation. I have been a source to journalist nationwide, recently particularly for news stories using the DFR database developed by Pro Publica.
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