The Home Hemodialysis Push

Discussions for Patients, Family, and Friends
1

I read many posts on this site about HHD (Home hemodialysis). The other posts are about traditional peritoneal dialysis with dextrose based solutions and cycler treatments.

This leads me to start a topic asking a few questions:

  1. How many of you on home hemodialysis/peritoneal dialysis are on diuretics to help you continue to rely on your own kidneys to remove fluid? (The more urine you produce, the LESS dialysis you need).

  2. How many of those on home hemodialysis have nursing staff collecting your 24 hour urine and adding it to your monthly KT/V labs to help you REDUCE your time on dialysis?

  3. How many on HHD are on 2-3 days a week with urine output >300cc?

  4. How many PD patients are using sugar free dialysis products?

  5. How many people feel that there kidney doctor/nurse are continually catering to you or your patients dialysis treatment to their specific needs and accessing your quality of life? How often is your dialysis increased in response to a problem?

One challenge that we have experienced at Premier Dialysis is that patients believe all doctors are created equal, that if other options were available “‘my doctor would tell me about it.”

If you are on any home dialysis without medications to help you urinate, then your team isn’t following current guidelines.

If you’re on home hemo and urinate and you don’t submit it to your home nurse, they aren’t affording you the opportunity to do less dialysis. Remember dialysis is an industry driven financially to have you do MORE treatments not less.

If your BUN is up and they didn’t verify whether you are dehydrated and simply increase dialysis, then perhaps they don’t have all the knowledge.

This post today is to encourage you to do something we’ve been told is completely inappropriate; challenge your nephrologist and nurses decisions. Ask them when the last time they read a study about current guidelines? Are they just doing what they have always done? Ask them the last time they updated their thought process related to a patients treatment. Ask them their experience with extraneal (sugar free) PD solution. Ask them if when they update your prescription, was their first thought whether or not THEY would want to do what they are asking you to do? Or was this just the quickest way to achieve an outcome they want to see on your lab sheet without that consideration.

Everyone on this site is seeking information, comfort, and support when dealing with this illness.

I don’t know any of you personally. One thing I do know is that patients are being over-dialyzed to achieve a status quo that was created 40 years ago.

Push your clinical team to think outside the box and create for you a treatment that is catered to YOUR body and YOUR needs.

Josh

2

My nurses said APD would be ideal for me. We took that recommendation. I spent a year getting sick, my bloods.getting worse. To the point my nephrologist was talking Haemo.
We demanded to go back on manual bags. In one month, my creatitine is 860 from 1190, I have lost 14kg of water weight and my K is back to normal.

No one in that year thought that there was a problem…except for me.

ALWAYS ask questions. They get to go home to their normal lives, they dont sit worrying about us.

3

I know my post if frowned upon with people in the industry, but your story is what it’s all about.

Now to be clear I am not advocating for self care over clinician care, but one thing I do believe in is every BODY is created differently.

At our company each of our 135 patients has a different prescription. Why? Because each of our patients has a different urine output, a different UF with extraneal, a different threshold for BUN/uremia.

For that reason each person deserves extra attention to their care plan. It is effortless to simply put in a height and weight and spit out a prescription. It’s more work to individualize.

My post is to advocate for patients to see the best clinicians with the most up to date knowledge and ISPD and clinical knowledge.

All nephrologist are not created equal, all nurses are not created equal.

We hope at Premier to set a new raised bar for home care and elevate others to meet our level.

If you are in Michigan or Florida we have active programs and are opening in New York and Illinois next. If patients or family members are in those states please do not hesitate to reach out for a consultation from our care team. 1-888-kidney-0

4

I disagree with you slightly. Generally speaking the more dialysis the better. Have you ever had a look at your blood results? Generally speaking, they’re VERY far from normal parameters. Currently, I’m doing dialysis 6x a week and feeling MUCH better than when I was doing it 3x a week.

But I do agree with you when you say see what works for you. Generally though, the more dialysis the better.

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5

I’d also like to chime in and disagree with you on “the more the better.”

When they first wanted to reduce hemoglobin A1C on diabetes to 5% there was a huge amount of very ill people, they ended up raising A1C goals to 7%.

On that same regard dialyzing people to normal levels causes severe harm in terms of over dialysis.

Do you do the extra treatments as “workout” or do you actually feel better?

Our home hemos are 2x a week with focus on residual function. Our PD are once a day icodextran exchanges.

All our focus is on quality of life and our patients living their life to the fullest. They could not do that strapped to a PD cycler or at even 4x a week hemo.

Your BUN doesn’t always have to be 30, your Cr 5.0. You’re not a piece of paper; you’re a person who seeks to live a normal life

Less can be more. More life to life, more travel, less time on a machines

6

I’m afraid we disagree with you, Josh. The diabetes research is badly flawed–teaching people that diabetes “is a progressive illness” while the ADA tells them to consume 135 grams of carbs a day has never made any sense, and trying to chase blood sugar fluctuations with meds is not a good approach. The best diabetes advice I’ve seen is from Dr. Bernstein, who is himself a type 1 patient and an engineer who went to medical school to gain credibility for his tight control approach.

As far as dialysis, at MEI, we look at the long term, not just short-term quality of life. MANY people who choose to stop dialysis do so because of musculoskeletal pain from mineral bone disease and amyloidosis. PD doesn’t remove much beta-2 microglobulin, and neither do short, infrequent HD treatments. The ONLY way to get B2m out of the blood is with long, gentle treatments. There is no such thing as “overdialysis.” Even 48 hours of nocturnal home hemo per week doesn’t come close to the toxin-removal efficiency of a kidney transplant. It is not possible to remove too many toxins with dialysis. Can’t be done. It IS possible to dehydrate people and stun their hearts, brains, kidneys, gut with aggressive ultrafiltration. Short, infrequent HD treatments tend to mean aggressive ultrafiltration…

7

I’m going to go ahead and remind everyone that this is both an art and a science. “More is always better” is just as incorrect as a " less is always more" approach. Neither statement is taking into account who the patient is, or what the patient wants.

A “correct” dialysis prescription is specific to the individual and their preferences, needs, and wants. Different patients have different goals of care and primary concerns and deserve to weigh these kinds of decisions in the most informed manner possible. Blanket statements about anything are not helpful or relevant to everyone.

If a person’s focus is only on quality of life and “enjoying life” is defined by not doing a lot of treatment, then sure, one option is to reduce down treatment time/frequency and let symptoms be the guide. In which case, yes. A person can replace just enough function to feel well enough and carry about with their business as they did. That should last a little while. There is nothing wrong with that, as long as the patient is the one weighing the scales and understands that there is long-term damage to all systems (including RRF) from the kidney failure.

Another person might want to focus on systemic preservation and physiologic stability. That person might really value living for as long as possible with fewer irreversible complications. They might want to not limit their diet at all, ever. If that’s the case, then longer/more frequent treatments might make the most sense in that situation. The trade-off of time may be worth it to the patient’s big picture. Again, the patient holds the scales.

Measuring anything in dialysis with urea is lousy science, we all should know that by now. It “represents” a heck of a lot of molecules-- many of which don’t behave anything like urea. It’s a reliable and cheap marker-- but silly to try to use it to explain how poorly or well a human being is actually doing, in my opinion.

We know that there are hundreds (if not thousands, billions, what-have-you) of “uremic toxins” (and more keep getting added in once you count environmental pollutants that accumulate in CKD/ESKD) none of which are quantifiable by a GFR or a Kt/V-- and plenty of which are protein-bound, impossible to remove at all via PD and very poorly removed by conventional HD. Oh, and also not on anyone’s labs.

B2M, TNF, CRP, (there’s a whole lot, fall down that rabbit hole if you want to be horrified, sometime!) etc contribute to the cardiovascular problems that are the leading cause of death in kidney patients. We can’t ignore that. We know the inflammation from these toxins tank QoL with pain, malnutrition, and ESA-resistance. The levels of those toxins only normalize with a transplant.

Even in NHHD, the accumulations are stunning. Fluid removal is not the only objective, but that needs to be done gently to avoid harming RRF, another case for low/slow/frequent treatments.

8

To clarify, “over-dialysis” in the context of all the symptoms you mentioned near the end of your response. Dehydration and excessive fluid removals.

Optimal starts on patients help to preserve residual renal function through less aggressive forms of dialysis.

QLHD is 2x a week for patients with appropriate self regulation of fluids. Never do we exceed 10ml/kg on removal and ideally not greater than 500ml an hour when possible.

Patients would likely be unsuccessful with QLPD and QLHD models that have been established on dialysis for long periods of time that lack urine output.

We are currently compiling data on our 680 patient months and each month we add 150 more patient months of data.

Thank you for the response

9

Unfortunately I still disagree with your position. You can’t use you’re example with hemoglobin A1C in relation to diabetes to justify why patients shouldn’t aim to have more clearance in HD. They’re two completely different medical scenarios.

I have spent time extensively researching long-term prognosis with dialysis (since I am a dialysis patient myself who is relatively young and would like to focus on longevity). Did you know that for HD urea clearance at the start of the session is very high and results in patients feeling better? One study looked at patients who stopped dialysis as soon as they felt better, but guess what? Those patients died much sooner than patients who stayed on the machine longer. The reason is because more than just urea needs to be cleared from the body. Although its not nice to read in writing, patients doing what simply makes them ‘feel’ better doesn’t mean they actually are better in regards to dialysis. We need to look at the literature and data to be able to discern what is actually good for dialysis patients. Not what we think is good for them. I could make an equal argument that patients who do more dialysis, will feel better to take on life when they are not on dialysis. What would you prefer? Having more free time but feeling okay most of the time. Or having less time but feeling great in the days you do have.

Nocturnal hemodialysis is the best treatment we can offer patients as of this very moment. Yes they are on a machine 8 hours every night or every second night yet they have every single waking hour feeling great and carrying on with life.

If we simply just look at the data and research it is VERY clear and evident that the current 3x 4 hours dialysis schedule is flawed in so many ways. From the ultrafiltration rate, to the blood flow rate, to the middle molecule clearance the picture is not a good one. I do not believe the blanket statement of “the more the better” is remotely incorrect in any sense. It SHOULD be the aim of dialysis patients to do as much dialysis as they can do, whilst obviously maintaining a life balance that works for them. They will feel better, live longer and have higher quality of lives. Me doing more dialysis has resulted in me being able to LIVE, not just SURVIVE. This is an important distinction.

I will triumph this for any dialysis patients reading. Do your best to do Home nocturnal hemodialysis. In almost every facet your life will improve. Post dialysis fatigue, energy levels, appetite, medications, blood pressure, sex drive, cognitive function, sleep, restless legs and a lot more.

Its easy to fall into the pot hole that dialysis is taking away your life. But the irony is, the more you embrace it the better your life becomes.

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10

PapaS, I hope you will consider writing blog posts for us! Any topic related to home dialysis is great, and it sounds like you have a lot of hard-fought wisdom to share.

11

Just passionate and thankful kidney disease patients have a viable option to continue living a fulfilling life. I’m open to spreading what I have learned so far regarding dialysis. If an opportunity presents itself I would love to share something more formal from what I have learnt.

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12

Hi PapaS, I’m going to try to message you through this site to give you information about writing one or more blogs for Home Dialysis Central.

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13

I would also like to understand this - I think there’s a better way for patients to live a better quality of life with home dialysis. I know the diet options are much more varied with PD at home,

14

There are benefits and challenges with every type of dialysis, including home dialysis options. Of the many articles about home dialysis on PubMed.gov, here are a couple that discuss benefits and challenges.

You might want to check out the decision aid, My Kidney Life Plan, to see how your values might help you choose a treatment if you had kidney failure.

Finally, dialysis clinics in the U.S. are required by CMS (Medicare) under ESRD regulations to ask patients to complete a health-related quality of life survey at least annually. Most use the KDQOL-36 and MEI, the nonprofit that administers this Forum, developed a program called KDQOL Complete to help clinics score, analyze and report to the patient and dialysis team survey results to help in care planning. There are only a few reasons to exclude a patient, so most dialysis clinics in the U.S. should be monitoring their patients’ HRQOL and addressing low or declining scores that have been found in large research studies to predict hospitalizations and death.

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15

Take it from me. The first 6 months of dialysis was absolutely horrible for a culmination of factors. To a certain degree, which is also unfortunate, the nephrologists and doctors aren’t necessarily concerned about what the most optimal treatment is for individuals. This is due to a plethera of reasons and the full picture of the scenario is complicated. However, as a patient its not your job to worry about things such as logistics and administrative issues. It is your responsibility to be an advocate for yourself to ensure that you are getting the best possible standard of care. The best thing you can do for yourself is to learn to do the treatment yourself.

It’s also highly dependent on what your goals are too, but generally speaking get involved in your health care. Look at your blood results, ask questions, constantly pose the question to your doctors on what you can be doing better, and what options are available to you. If you have the capacity to do dialysis at home and to do your own dialysis schedule, namely doing more treatments, at slower BFR (depending on what machine you have BFR requirements may be different), then ultimately it will be extremely beneficial for you.

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