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Bill Peckham
Seattle, Washington USA
Sign Maker; Volunteer; Blogger; Dialyzor.
Recent Activity
Bill Peckham I'm going to be in New York CIty on Wednesday to give half of a talk: Pay for performance in ESRD; defining CQI Metrics focused on disease center performance and metrics focused on the patient experience. What are... Continue reading
By Bill Peckham Self-centered care is a good idea. I look forward to discussing the macro and the micro with doubters, fence sitters and the confused. I’ll put Gary in the skeptic camp You are obviously proposing a radical change.... Continue reading
By Bill Peckham RenalWEB’s Gary Peterson asks: How is this Copernican system defined in terms of policies, metrics, and financial incentives? From earth whether we believe we are at the center of the universe with the Sun and all else... Continue reading
By Bill Peckham I like the commentary Kevin Fowler shared on Twitter, Innovation in Chronic Kidney Disease: The Need for the Patient Voice, read the whole thing. Fowler is making a big picture case that including the patient voice in... Continue reading
By Bill Peckham With The Modality Mayhem Of Modern Dialysis Dr Agar runs through the reasons why it is so hard for any of us to answer the question: What is the best dialysis option? On internet discussion forums it... Continue reading
By Bill Peckham In January this year HDC published an article by Dr. Agar, Home Dialysis Central Beware What You Wish For, Or How Good Dialysis Got Gazumped. First I should confess my astonishment that Gazumped is a word. Second,... Continue reading
By Bill Peckham Among my last posts before my blogging break was a series of post in support of incenter every other day dialysis schedules (Part One); (Part Two); (Part Three); (Part Four); (Part Five); (Part Six) EOD was a... Continue reading
By Bill Peckham My asking the questions: could 3x3 dialysis ‘work’? is HD a shield?, is not a signal that I have changed my mind about any of my previous positions (though I might have since I don’t have a... Continue reading
By Bill Peckham As Dori says I do know that the only way three hours of dialysis three days a week could work for me (not that I am considering it) is if I had working kidneys. It is true.... Continue reading
By Bill Peckham I agree with Mark that more frequent hemodialysis should be reimbursed fairly and currently I don’t think it is. I’ve written that EOD schedules are implicitly supported by MAC/FI charter. However, I’ve often skirted around a fundamental... Continue reading
By Bill Peckham I’ve been using dialysis for 27 years. I dialyze ~6.5 hours, overnight as often as I can stand. For years I have advocated to increase the number of people using home and more frequent hemodialysis as opposed... Continue reading
By Bill Peckham The market wants people to get by with three hours of hemodialysis, three days a week. How that could work? What sort of additional tool would a person need to feel well with a low dose of... Continue reading
By Bill Peckham I admit that I was a little excited when I checked in with renalWEB this morning. There was late breaking news from American Society of Nephrology's Kidney Week 2017 Annual Meeting last week: Seven Days a Week... Continue reading
Nice to see this post called out, even if it is to wonder why I don't still post to DSEN. Time. Time is the short answer. For the last five or so years I have worked full time through the Carpenters Union making signs for tradeshows. The workload is unpredictable but in general I haven't had the energy or really the heart to keep up the blog or advocacy generally. I was an advocate for 10 years, from 2000 to 2010. An advocate meaning engaged in trying to shape national policy in the provision of dialysis, I saw myself as working to improve how severe kidney disease is experienced. DSEN was a part of it but when I think about my engagement extending for that whole decade and while I can point to successes on the whole I think the experience of having severe kidney disease has gotten worse over time. That dealing with severe kidney disease is harder today that it was 10 years ago and ten years ago it was harder than ten years before that. That's what I am thinking about when I say I didn't have the heart to keep blogging, I didn't have the heart to continue to be an advocate. I didn't see progress in making the experience of ESRD better. Watch this video https://www.youtube.com/watch?v=4tW86qDqiIM , it showcases the vision of what it meant to use dialysis in the late '70s we've retreated from this progressive vision.
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Here is a photo of the meal I received in Tassin in 1996 https://i.imgur.com/M9yRAwI.jpg Until renal administrators offer more than one schedule incenter, until they stop telling themselves they are doing enough, I'm not sure what a nephrologist can do. In my judgement it is the renal administrators that must take the first step to improving the provision of dialysis.
Becky I usually take the cart I have at home with me when I travel by car, the machine is heavy but thankfully I can still lift it.
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Theresa my experience is that it takes dialysis, diet and exercise to thrive with severe kidney disease. I have this post Expected dialysis lifespan: How long does someone live who is on dialysis? from 7 years ago but it still reflects my thoughts.
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Carmen it is common for people who need dialysis to stop urinating, dialysis's job is to remove what is normally removed by urination.
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Miriam insurance is for things that are unexpected, so no it would not be available to reimburse expected medical expenses.
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Emma it often takes a while to grow accustom to the rigors of using hemodialysis, for some people the transition is pretty quick with few bumps, for others it can be much more difficult. Ordinarily that washed out, hungover feeling is made worse when the fluid shifts to quickly or too far too quick. Does your hubby still urinate? Some types of kidney disease - PKD for instance - leave a person still producing urine. If this is the case hemidialysis needs to be done differently than it is for the majority of people incenter. In general I think you would be helped by joining an online discussion group, Facebook seems to be where every one goes today or if you prefer try a dedicated support site http://ihatedialysis.com/forum
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The URL for Peter's blog, HemoDoc, has been updated. Please let me know if you'd like a URL changed.
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Does your husband want to stop working? I ask because from what you wrote it sounds like you expect him to need to stop working. That is a mistake. You asked “How did you get to where you are with kidney disease” which I took to mean “How is it you you’ve made your kidney disease a small part of your life while working full time, volunteering and traveling” my answer is I’ve done that by working a physical job. My physical job deserves a lot of the credit for how well I’ve accommodated dialysis for the last 24 years – since I was 27 years old. Rather than bending your husband to fit the requirements of kidney disease you should be looking for ways to bend kidney disease to fit your husband. I don’t know your husband but it sounds like he is the type of guy who, like me, needs to work. It’s what we do. Now it may be that the damn disease will make it impossible to continue his work but unless he tries, how can anyone really know? If you want a normalish life living with severe kidney disease you have try to live a normalish life. If having a normalish life includes working then you need to continue working until you can’t, until you try and try again and just can’t work. Don’t stop working because you think there will be a time when you can’t so why even try.
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Hi Dayna I couldn’t do my job – I work through the Carpenters’ Union producing graphics for tradeshows – if having a fistula meant you can’t lift. The thing to avoid with a fistula is carrying weight across it – for instance a strap across my forearm is a no no, or carrying a bundle of wood with the weight across my forearms. Lifting things with your hand is fine once the surgery has healed and after starting dialysis he’d want to make sure the needle sites were fully clotted. I give my physical job a lot of the credit for how well I am able to accommodate dialysis. I started working through the union in 1995 after four years of using dialysis. At the time I felt I was in a downward spiral of not having energy, not doing much, not eating well, and not sleeping well – each thing made the other symptoms worse. Once I started working – as a new hire I got a lot of the more physical jobs on show site – I ate better, slept better, which gave me more energy which allowed me to do more, it was an upward spiral each thing made the other symptoms better. I’ve been doing lone dialysis at home overnight since January 2008 and have found it to be the least burdensome form of treatment over the 24 years using hemodialysis. I give over about five hours of awake time a week to dialysis, while receiving over 30 hours a week of medicine (aka dialysis) which means using home nocturnal hemodialysis has little impact on my day to day activities and leaves me feeling well. The key thing to consider is awake time spent dealing with treatment or how to maximize your awake time. To me the important thing to figure out is how to give yourself the most time awake and productive, home nocturnal does this better than any other version of hemodialysis that I’ve tried. As far as the diet I’d go with what the doctor is telling you, having diabetes and kidney disease is tough, my main concern would be making sure he’s eating enough calories, malnutrition is more of a problem than having a bit too much sodium
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I dialyzed incenter for 11 years and was a dialysis success story during that time - I worked, volunteered and traveled the world. Since 2001 I have dialyzed at home and continued to be a success, working volunteering and traveling but in addition I've felt better. Not only do I feel better, I think the way I dialyze currently, over night and more than four times a week, is the least burdensome way I have dialyzed in my 23 years of using hemodialysis. I'd say give home hemodialysis a try, the only way to know for sure if it is good fit is to see for yourself.
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By Bill Peckham I'm dialyzing for the second time on my trip through the Grand Canyon, this was the most challenging treatment. The video starts with the question what did you think about today's treatment? In the middle, I'm talking... Continue reading