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By Bill Peckham

I am busy being retired and getting fit. Coming up on the start of my 29th year using hemodialysis and I have recommitted to seeing how far I can take relying on a a medical procedure to replace renal function. I have a new project that I am excited about but want to get DTS up and going before talking too much it. 

My hands are not what they use to be, I can't make a fist or snap my fingers. It hurts to type and use a mouse after just a short time at the computer. My hand's weakness and pain with use is why I retired from the Union on a disability pension. I can't make signs for more than a couple hours and sitting at a computer - moving to the office side of the business - left me feeling worse. Disability retirement could be temporary but work would have to fit the life I have designed and look forward to.

SEN will have posts - I will have one (or several) posts on pain and the treatment of pain just not very often. I don't feel video discussions are really in my swing space - I'd need a producer. Twitter however, has been a good fit. The nephrology Twitter community is fun and interesting to interact with, give it a try and follow me @BillPeckham I like the constraint and the brevity of 140 characters but when needed I like being able to post longer commentary as a thread. Check it out.

My right hand is numb so time to stop. Hope to see you on twitter, occasionally here and soon through DTS.

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By Bill Peckham

I am busy being retired and getting fit. Coming up on the start of my 29th year using hemodialysis and I have recommitted to seeing how far I can take relying on a a medical procedure to replace renal function. I have a new project that I am excited about but want to get DTS up and going before talking too much it. 

My hands are not what they use to be, I can't make a fist or snap my fingers. It hurts to type and use a mouse after just a short time at the computer. My hand's weakness and pain with use is why I retired from the Union on a disability pension. I can't make signs for more than a couple hours and sitting at a computer - moving to the office side of the business - left me feeling worse. Disability retirement could be temporary but work would have to fit the life I have designed and look forward to.

SEN will have posts - I will have one (or several) posts on pain and the treatment of pain just not very often. I don't feel video discussions are really in my swing space - I'd need a producer. Twitter however, has been a good fit. The nephrology Twitter community is fun and interesting to interact with, give it a try and follow me @BillPeckham I like the constraint and the brevity of 140 characters but when needed I like being able to post longer commentary as a thread. Check it out.

My right hand is numb so time to stop. Hope to see you on twitter, occasionally here and soon through DTS.

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By Bill Peckham

I check in with Dr Peter Laird for Sharp End of the Needle Talk5:

SEN5 Peckham and Laird: checking in with Peter - YouTube

It is hard to discuss the hundreds of thousands dialyzing incenter who do not want a transplant, and who do not want to dialyze at home, and will not extend treatments. Do they have a voice? are their voices welcome? Peter and I are not the ones to speak for them but I know they're there; I don't hear their voices.

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By Bill Peckham 

My last SEN Talk with Dr Hippen caused me to reflect on the big picture of kidney care. The problem goes beyond silos. If there were no silos dividing dialysis from transplant, early stage CKD from Stage5, there would still be the issue that a plurality (*if not majority) of people with Stage5 choose to dialyze incenter, conventionally. *700,000 people in the US have CKD5: 200,000 with transplant/500,000 using dialysis. The 500,000 dialyzors are 90% incenter/10% home. Account for the 100,000 ish people dialyzing incenter who are or want to be listed for a transplant and still >350,000 are incenter to stay. 

I'm finding it hard to focus discussions in on this group of dialyzors: the enduring plurality of people treating their CKD5 with dialysis in a way no nephrologist would accept. That's the incenter hemodialysis problem.

 

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By Bill Peckham

Dr Hippen (writings, LinkedIn interview) talks with me about the need to integrate kidney transplant care into comprehensive care models, risk and what patient-centered means in the kidney transplant context. 

SEN4 Peckham Hippen: Patient-centered care in kidney transplant - YouTube

Hippen's AJT is article is here. One if these days he and I should do a SEN Talk just on transplant v dialysis cost numbers.

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By Bill Peckham

Henning Søndergaard in Copenhagen joins me for SEN Talk3. He describes a self-care dialysis unit that is patient-centered beyond what is usually proposed in the United States. I know of Hui Laulima o Hana Maui (here, here) which operates as a shared space for home dialyzors but the Copenhagen example is self care taken to a new level. 

SEN3 Peckham and Sondergaard: Danish patient-centered care - YouTube

Søndergaard's self care unit allows people 24/7 access to dialysis, they can schedule treatment times over the internet and let themselves in with their own key card. Every other day dialysis, and incenter nocturnal dialysis are treatment options. Really it is on demand dialysis.

Søndergaard's two part article for Nephrology News & Issues is here.

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By Bill Peckham

I can make myself feel uremic by decreasing my dose of dialysis. I can make myself feel unwell, struggle to walk up a flight of stairs, lose my appetite and my energy in general ... and then, incredibly, I can feel better by dialyzing a few nights in a row. This demonstration is repeatable by me and I suspect is one reason people who use home hemodialysis are among the kidney community's most active dialyzor advocates. We, who get enough dialysis, know dialysis can reverse the symptoms people often point to when talking about how they feel dialyzing incenter, three days a week. 

I most recently induced uremia in myself last month after a week in London. (I retired last year and almost immediately developed a severe comorbidity - Hamiltonitise, which is marked by a compulsion to see the musical Hamilton. (It seems to be under control, I've seen each of the live productions and use the cast album as needed.)) I dialyzed incenter three times during the week and extended my weekend coming home, by the time I got back on my normal schedule I felt uremic. Hemodialysis works and dose matters. Patient-centered care has to include finding the best life/dialysis balance for each person.

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By Bill Peckham

This is the first official Sharp End of the Needle Talk - SEN Talk - that I will also publish as a podcast (assuming I figure out how). As an active advocate, volunteer and donor for and to kidney research I've had many conversations over the last 15 years that informed my advocacy and made me a more committed supporter. My goal with SEN Talks is to bring those conversations online.  

SEN2 Peckham and O'Hare: Patient-centered care and research - YouTube

Dr. Ann O'Hare is a professor of Medicine at the University of Washington, a researcher at the Kidney Research Institute and a practicing nephrologist at the Veterans Administration. I attended a recent Grand Rounds that she presented following on her AJKD article published last month Patient-Centered Care in Renal Medicine: Five Strategies to Meet the Challenge.

Patient-centered care and patient-centered research are seen as a way forward, a way of providing people who need dialysis "better care", which sounds good but what do we mean by "good care"? What makes care "better"? For this to work effort has to come from both directions, from providers and from the sharp end of the needle, from patients. It occured to me after we talked, that O'Hare's five strategies to provide patient-centered care: listening, making time, being willing to go beyond our job description, re-imagining what it means to provide “good” care, and seeing the value of relationship building could be repurposed into five strategies to receive self-centered care. Listening and relationship building are keystones to receiving self-centered care - be coachable - what other strategies should be included?

I hope this is just the first of an ongoing discussion with renal researchers and providers, how to create a more humane dialysis system both in the experience of dialysis and in the practice of dialysis. There are encouraging trends, but few people are satisfied with the provision of dialysis in the US writ large because we know it can be improved.

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