Advocacy for Better Home Dialysis: View from a 27-year Dialyzor

This blog post was made by Michael Johnson on February 27, 2020.
Advocacy for Better Home Dialysis: View from a 27-year Dialyzor

Many people, especially some specific bloggers and some doctors have a one-sided view of what’s going on in the dialysis industry worldwide.  There have been many attempts at home hemo machines that seemed like good ideas on the surface. But, in reality and practical use, they were failures. 

There is no grand conspiracy

The Baby K was really just a shrunken version of an in-center machine. It worked well and had good outcomes for those who used it 5+ days a week. The problem it had was that insurance doesn’t pay your utility bills. The excessive water use and electrical needs were not great for patients on fixed incomes or who had older homes. And, running the lines can be confusing for older patients. 

Sorbent technology machines are definitely a great idea to deal with portability and water usage. But they have been consistently unreliable and create another moving part that could fail and cause interruptions to treatment. They are also much more expensive, although the price could come down over time. 

Several other machines were not much better in design or function. They were just fancier looking and had touch screens. But once they tried using them in real-world scenarios, they alarmed and stopped treatment constantly. They also had exponentially more issues than the NxStage System One or Pureflow systems. 

Having talked to patients who were in trials for some of these machines, they were just new versions of old failed ideas. But those failures have led to innovations that we should be seeing soon

The next generation of machines that will actually come into use and be successful will need to be more simple in functionality and more portable by cutting weight and water requirements. The cycler also needs to run independent of the dialysate supply, so if one system fails, a backup could be readily used—kind of like a Pureflow and a portable warmer with hanging bags mixed with some type of sorbent or recycling technology

The biggest complaint I hear about NxStage isn’t so much the cycler itself, but the Pureflow or supply of dialysate. This is a huge issue with all forms of dialysis machines.  A reliable source of dialysate is needed for any machine to do what it’s intended to do. This is one of the biggest hurdles to all home dialysis options. You can’t have a machine that uses too much water or countless bags of dialysate, but you need a reliable source for the cycler to draw from that won’t cause treatment interruptions. And on top of all that, you need run times and blood flow rates that aren’t detrimental to people’s health and lifestyle

Everyone should point out any issues they are having with dialysis machines. If enough people do so, changes will be made. But, everyone should also not just think that everything is everyone else’s fault all the time. I have been on dialysis since 1993. So, I have seen and felt the changes made to machines over the years. Those who think the current generation of machines are bad have no idea how far they have come in three decades

Just to put it into perspective, in the 90’s, clinics were still washing and re-using dialysis filters, and home hemo wasn’t even an option for most of the country. 

Don’t bash any treatment option! For someone out there, an option could make a huge difference in his or her life. But if they are burned on the idea before even being able to try it, that person may die earlier than s/he needed to—all because they read something online that may have just been someone having a bad week. 

Don’t sugarcoat reality, but also don’t buy into the people who are constant naysayers. Being bitter and pissed off all the time just drags everyone else down with them. Those are the types of people who don’t last very long. 

The patients and advocates who seem to last the longest appreciate their opportunities and work hard to educate others. They maintain their perspective and priorities. They lift those around them up—not tear them down. They also understand how things used to be and how they are now through real experience, not biased blogs or articles written by people with pretty clear selfish agendas.  In the end, your dialysis experience is individual to you, and part of that experience is, unfortunately, trial and error. 

Do your own research. Ask lots of questions. Be your own advocate. Make your criticism constructive instead of destructive.

Comments

  • Amy Staples

    Feb 28, 2020 7:11 PM

    I agree on how dialysis has changed a lot over the years. I watched my parents prepare for home dialysis back in 1968 and the machines and prepping was monstrous. Even in 2002 when I started nocturnal home hemo I was one of only 100 patients in the U.S. who were using that modality. But let's be honest, there is a difference in "options of modality vs. options of devices." I admit I've been one of those you've labeled ".... people who are constant naysayers. Being bitter and pissed off all the time just drags everyone else down with them. Those are the types of people who don’t last very long." When I was forced to change devices from the Baby K to the NxStage I was devastated not just emotionally but physically. Nearly 15 months later and my physical state has somewhat stabilized but I'm nowhere near the higher health status I had maintained with the baby K (and standard K and H). I've talked about my physical and thus emotional issues for a year now and nothing really has changed. I'm still miserable. I still struggle. Everyday Naysayer? Well yes I guess so, but speaking out about my personal problems has revealed a rather large underlying problem with the "device" causing a serious lack of retention in HHD people. This is IMPORTANT to speak and advocate about in order to impact change. HHD = bad? Nope! Certain device issues affecting large groups of people = bad? YES! And it needs to be addressed. And btw I've been doing this nearly 18 years so I am not a 'short-lived HHD person.' But, back to your comment about naysayers -- bitter, pissed off people. Again I admit the past 15 months of dreadful decline in health due to a device has caused some bitterness and being pissed off. I believe anyone who has gone through what I have and continue to do so would feel the same way. And, the support groups I have "vented" in are there for just that purpose! Isn't that part of the purpose of support groups? I've recently limited my voice in that arena. Its sad though when any dialysis patients are labeled "non-compliant", but its a million times worse when HHD patients are then labeled "bitter and pissed off....drags everyone else down with them." Yes I should control and make better use of my words so perhaps I'm feeling guilty about the truth of your words but really? Why should we have to be rundown by our own peers? When I research things I want to know every little gritty detail, I want to be fully informed - good AND bad! Another issue I had was the comment "The Baby K was really just a shrunken version of an in-center machine. It worked well and had good outcomes for those who used it 5+ days a week. The problem it had was that insurance doesn’t pay your utility bills. The excessive water use and electrical needs were not great for patients on fixed incomes or who had older homes. And, running the lines can be confusing for older patients." We didn't have a real issue with higher electric and water bills except when in a rural incorporated city of less than 250 where the charges for all customers were outrageous. We are on a fixed income so yes the water charges were slightly more but no difference in electrical. Now "running the lines can be confusing for older patients." Not sure about that, its a simple process. I'm 61 and never had an issue with it and don't see that it would be confusing for anyone unless they were visually impaired. But that's me and I could be wrong. You wrote: "The patients and advocates who seem to last the longest appreciate their opportunities and work hard to educate others. They maintain their perspective and priorities. They lift those around them up—not tear them down. They also understand how things used to be and how they are now through real experience, not biased blogs or articles written by people with pretty clear selfish agendas. In the end, your dialysis experience is individual to you, and part of that experience is, unfortunately, trial and error. " We are not all the same. There are many people who are shy and have no abilities or desires to advocate or educate or lift up others around them. There are those who clash with others but it seems to be more about personalities and viewpoints not HHD options nor HHD devices. I guess I am blind as I see few blogs or articles written by people with pretty clear selfish agendas. I try to give others the benefit of the doubt. We don't know what another is or has gone through or where they're headed. We can only take what we hear, read or see at face value, process in our own way and move forward. You nor I cannot be blamed for another person's choices in dialysis modality be it clinic, HHD or PD. Yes, be positive but be fair and honest and assume those who are making their own choices are also smart enough to equally determine rightly for themselves. Blessings
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  • JoAnn Soyka

    Feb 28, 2020 4:52 AM

    I don't understand the conversation. My husband is on dialysis and I do the treatment. We have been doing it for two years. We use the NxStage cycler and Pureflo w/dialisate. It works fine. We haven't travelled with it yet, but are considering it this coming summer. What is the problem? It is a thousand times better than going to a clinic, which is kind of like going to hell. If we ever have to stop doing the treatment ourselves, I guess, it's equivalent to a death sentance. Anything is better than going to a clinic.
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  • Henning Sondergaard

    Feb 27, 2020 8:17 PM

    I am not to judge if there has been a conspiracy in the dialysis world. But I do know one thing. It has been run by two simultaneous duopolies. One on the clinic side and one on the hardware side. That has led to some extremely unhealthy business practices. In 2018 DaVita made a settlement with the feds for $ 240 million. That follows settlements in previous years for 350 million and 400 million. If they continuously are able to settle case of such a magnitude year after year, something is rotten in the dialysis business. When it comes to hardware, all I can say is this. If the development in consumer hardware had followed that of dialysis machines, then my laptop would be the size of eight city blocks right now. I think these two disparate examples says everything about how unhealthy the business practices have been in dialysis for the past 50+ years. Some may call it conspiracy, others may call it something else. But we as consumers have been cheated out of living good and fulfilling lives by greedy suits with a complete lack of care for our lives. That's a fact!
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