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Bill Peckham
Seattle, Washington USA
Sign Maker; Volunteer; Blogger; Dialyzor.
Recent Activity
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
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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
By Bill Peckham I'm answering questions over at Reddit. If you've ever wanted to ask me something about dialysis, advocacy, nonprofit governance, travel or sign making now is your chance. Ask me anything. Continue reading
Thanks Zach, a wee bit early but let the festivities begin :) August 30 I'll turn 50!
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By Bill Peckham I've been back a week; I am still absorbing the experience of spending 8 days rafting 225 miles through the Grand Canyon. Everything went well, I completed three hemodialysis treatments using the NxStage, literally dialyzing on a... Continue reading
By Bill Peckham The short answer is: I've been working. I've kept my insurance coverage current since I returned to a focus on work in 2010. I feel stronger, healthier than I did three years ago; my grip strength is... Continue reading
Medicare will not pay anything towards dialysis outside of the US. Medicare only reimburses for dialysis provided at units it can have inspected - which is why reimbursement is not available abroad or even on dialysis cruises that occur entirely in US waters or leave/return from/to a US port. As far as the cost, Orlando, it has been nearly 15 years since I traveled in Spain but as far as I remember the cost per treatment was in the neighborhood of 300 Euros. I think it is possible that if you identify yourself as being an unreimbursed self pay dialyzor they may give you a better deal.
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I think your self righteousness is very unatractive. If you can read the article and come away thinking that Dr Kelly or anyone else in Seattle is proposing to withhold dialysis "those that the "committee" deems inappropriate" then you have failed as a reader. If you can not accept the salience of the fact that people are being given an inappropriate treatment, then you are blind to a great deal of avoidable human suffering. Human suffering in the service of profits is not something I would wave away in the name of self determination.
Again, do you think there are people in the US put on dialysis inappropriately? Meaning are there people in the US that are using dialysis that would be expected to have a better outcome forgoing dialysis?
My spell correct substituted "contentedness" for "centeredness" in the above post ... but really contentedness is not a bad concept to keep in mind for this discussion. Point taken, spell check, point taken.
The idea that someone with dementia should be subjected to a high dose of dialysis does not sound like patient contentedness to me and it does not sound optimal. I would not advocate for high dose dialysis for someone who is confined to a psychiatric unit. I would not expect a heroin addict to use a WAK. Optimal dialysis can mean conservative therapy. Patient contentedness can mean conservative therapy. The issue is that no one is in the business of providing conservative therapy. People are being sold the idea of dialysis as a universal treatment for CKD5 when, I think, a clear eyed evaluation would suggest that better choice woiuld be a conservative approach. And further, I believe, absent the CKD5 profit motive more people would use a conservative therapy when faced with failed kidneys and a conservative therapy, in those cases, from the point of view of the ill, would result in a better outcome. In Italy, more people use a conservative therapy than in the US. Does that mean that they are killing their elderly? Does that mean that there are death panels? I would say that it may well be an indication that more people are getting an appropriate treatment. Peter, would you say that in the US there are people put on dialysis who should not be on dialysis? I would say that in your vision of a non profit US dialysis world fewer people would be using dialysis because today people are being inappropriately dialyzed, in part due to the CKD profit motive. I don't think most readers of the article read a call for death panels, rather I think that Dr. Kelly's point is that everything pushes towards using dialysis - a powerful and entrenched business of dialysis amplifies the hopes of the ill and their families to create a system that is, to the eye of sympathetic observers, cruel. The cruelty of the system occurs not when an 84 year old dementia patient is denied daily dialysis. The cruelty occurs when that individual is subjected to dialysis at all. Where is that voice in the system? Where is the voice that pushes back against the vested interests?, the poorly informed?, the disinterested? Dr Kelly was calling for better outcomes, for patient contentedness, for frank conversations. Responding with calls for a WAK and higher doses of dialysis misses the point.
Well then your position isn't that dialysis needs to go farther, it's that physicians shouldn't concern themselves with being stewards of our medical resource. Medical care, dialysis, is a limited resource, not because someone is being a despot, but because that is the nature of medicine - demand will always outstrip supply. Scribner was not one to wave off uncomfortable realities, Dr. Kelley, a Scribner protege, is continuing the practice.
"He ticks off real-life cases: A 40-ish heroin user who injects heroin into her dialysis catheter, causing serious infections, and skips dialysis sessions. She says: "I want to dialyze. I want to take heroin." A 60-year-old patient who has been receiving dialysis for nearly two years in a locked hospital psych unit, despite violent outbursts in which he hits his nurses. No other facility will take him. A dying patient, unable to make decisions for herself, whose daughter, armed with a power-of-attorney, insists." Which of these cases is a case of dialysis not going far enough?
I can't say that there have been system wide advances in the last 15 years, there has been change but the care a person receives still, to a great degree, depends on their zip code. The system we have today works best for people who engage with their care, and who can find a good provider/physician to work with. For anyone facing severe kidney disease I recommend reading HELP, I NEED DIALYSIS! How to have a good future with kidney disease which is available through Amazon or here Diet (and exercise) can improve outcomes at every stage of kidney disease, the book can walk you through how. I have a few links for dietary and recipie informaiton here
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You mean no one besides me? It is widely discussed - talking to Dori Schatell at Home Dialysis Central is how I developed a lot of my thinking. I do agree that in the unit it is rarely mentioned and it is too often overlooked when talking about alternative dialysis schedules or even longer treatments leaving frequency alone. I think in general many units have a blind spot concerning things that happen outside the unit. When these units think of treatment burden they only consider what happens during treatment e.g. cramps, nausea ignoring or not giving adequate weight to the treatment burden once we get home.
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I've been dialyzing through the Northwest Kidney Centers in Seattle since 1990, I trained to dialyze at home with a helper using the B Braun in September 2001, and to self dialyze at home in September 2002 on the Aksys PHD; I've been a lone dialyzor ever since - I now use the NxStage System One. As of last month I have been dialyzing at home the majority of the 22 years I've used dialysis. Jack every situation is different but I know people have lone dialyzed in a NY City sized apartment. And my living space, that I share with an 11 week old puppy, is about 1,000 sq ft. You might be interested in the Hana model I haven't heard an update but I think colocating dialysis is an option that a progressive unit should explore.
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Good on ya Jack, 37 years puts you in elite company. I live alone, and have lone dialyzed since 2002, so it can and is being done. Is the issue that your center doesn't support lone dialysis or that you feel it isn't right for you?
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"For some people it’s just unacceptable that this model is profit-based. They’ll always attack us. They’re not evil people. It’s just that their ideology doesn’t allow for a virtuous for-profit company.”" Peter isn't it a relief that Thiry doesn't consider us evil people! Point of fact though, I have nothing against profit. I do think it is to a dialyzor's advantage to receive care through a community based nonprofit dialysis provider but it isn't because of what happens to the revenues in excess of expenses. The benefit of a nonprofit community based dialysis provider is that the structure invites engagement, as a dialyzor at a community based nonprofit you can have an impact on the care you receive. This engagement doesn't just mean there is a greater chance that you can have a unit that is a comfortable temperature, more importantly it means you can have a non infantilizing relationship with the business that provides your life sustaining medical care. The impossible thing to convey to the urinator reporters that look into this dialysis business, is the corrosive effect of being in an unbalanced power relationship, of being powerless against the powerful, of literally having to cede the power to keep you alive, and then having the powerful, the unit, assert their power coercively. When the PTB decide that dialyzor conformity leads to greater profits, dialyzors will be expected to conform.
Hi Colleen. You may never need dialysis, diet and exercise goes a long way, but you do live in an area with lots of good nephrology resources. And there're great resources online. Have you tried any of the online discussion boards?
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One edit: " a money delivery system ── to carePROVIDERS, their organizations ..." The organizations that receive money by definition never "give" anything. I think this nexus of money and influence, put's both money and a stick in the hands of the large dialysis organizations. The patient groups you chose not to name but I will, AAKP, DPC, RSN, NKF, rely on industry funding to accomplish work prescribed by the funders i.e. industry. The thinking goes You can't do the good things we do if you challenge the funders. If Medicare wants a culture of safety they must bypass the providers and direct incentives at the beneficiaries themselves. If dialyzors were being paid to be monitors of and participants in their own safety, the LDOs would be compelled by their patients to be better actors. The base problem here is that to work the system really depends on engaged, and aware, beneficiaries. There is not enough money in the Treasury pay corporations to care more about dialyzors than dialyzors care about themselves. However, we could pay dialyzors to manifest concern for their care. On thing about this Granuflo issue in particular though - why wasn't the elevated bicarb picked up by the MCP physicians in the monthly labs?