Home Dialysis: Myths and Rumors

Discussions for Patients, Family, and Friends HD For Patients
1

In the past 2 weeks I have advocated 3 in-center patients that are close to me…now and then I see them and we I have a good chat with them about the goodness of home diaysis…

Sadly, I have not been able to convince them, even invited them over to observe. However, what strikes me is the fear they express about home dialysis…they even told me that patients who do home dialysis die sooner than those in-center…I say to myself “what the heck!” Who in the world told them this? I didn’t want to further intrude who told them that, perhaps the in-center staff?

The point is I think rumors are running around that home dialysis is deadly…

Fact or opinion?

2

Hi Gus,

There are definitely fears about home dialysis among folks who are in-center. There aren’t any completed, large, randomized studies of home HD vs. in-center for survival. But there are at least a couple of small, non-randomized ones that suggest that daily home HD survival rivals that of transplant (which is much better than in-center HD). And, of course, Dr. Bernard Charra’s center in Tassin, France, where they’ve been doing 8 hour treatments three times per week for three decades has the best reported survival outcomes in the world.

So, I’d say these folks have it exactly backward.

3

Hi Gus;

Yes; There is a great fear of being Home alone during your treatments… In center treatments are rather easy compared to Home Hemo treatments where you are doing everything… All you have to do for the in center treatments is be there on time…

The risks of doing it at home is great but the rewards are more than worth these risks…
My partner has had end stage renal disease for about 18 years, the first 10 years she was at home doing PD…then she had a really bad infection in her stomach cavity and could not have a new cathater installed for PD so… Hemo was the only choice… After about 6 months of in center treatments. Never really feeling good while on in center hemo treatments. We decided to give Nightly Nocturnal Hemo Dialysis a try… As we didn’t have anything to loose. If she continued with her treatments in center her quality of life would not be worth it… and probably not be around today… We were the first patient/helper trained at the center… After about 4 months of training and having my home modified for a water treatment system and the Fresenius installed The rest is history.

She would probably still be on the Fresenius… But we got invited to talk about her treatments at one of National Kidney Foundation’s symposium and was introduced to the NxStage System One… After seeing how portable it was, and how well the patient was doing it, we were hooked and mentioned it to our center (Satellite now Wellbound) that if we could we would like to try using the NxStage… After about 5 years on the Fresenius we switched to the NxStage…

Since on NxStage we have been able to spend Christmas and New Years with her daughter in Los Angeles and this summer we were in Colorado for a few weeks to visit her other dather and grand kids… Just got back from Las Vegas … I decided that it was easier to drive and take the machine with us verses try to get it in amd out of the airport…

Maybe the way to get more people to try doing dialysis at home is to start them off on PD. My partner was rather fortunate to start on PD and not have the diet and fluid restrictions that one has while on HEMO DIALYSIS. and have the freedom to do it at your own time and being able to travel without making arrangements to have in center treatments at your destination. Also NxStage, Dialysis Centers, and Doctors need to produce a Video showing all the options available to patients with end stage renal disease… And have ALL patients review with family what their options are. But the most important part which is the hardest is to have the patient make up in their mind that they want to continue to have the best quality of life and not give up on life itself… live and enjoy life today as it is the beginning of the rest of their lives. Think the mental part is 90% of the solution… the other 10% is family support…

HemoHelper

4

You may well be onto something with PD first, Hemohelper. The sense I get is that folks who start with in-center hemo are context-bound–they don’t realize that it’s possible to feel better. This is compounded by a system that blames ESRD for a lot of the symptoms and long-term problems that, IMHO, are actually caused by in-center hemo. So, people think the new “dialysis normal” is to feel tired and washed out for hours, to have a severely limited diet and fluids, etc. And, of course, not having systematic education so that people learn about home modalities (and how they might impact their lifestyles) just continues it all…

Every type of treatment for ESRD–transplant included–has a cost-benefit analysis that is probably different for each person, but it’s not right that most people never get an opportunity to even find out that there are other options besides in-center.

5

[QUOTE=Dori Schatell;14204]You may well be onto something with PD first, Hemohelper. The sense I get is that folks who start with in-center hemo are context-bound–they don’t realize that it’s possible to feel better. This is compounded by a system that blames ESRD for a lot of the symptoms and long-term problems that, IMHO, are actually caused by in-center hemo. So, people think the new “dialysis normal” is to feel tired and washed out for hours, to have a severely limited diet and fluids, etc. And, of course, not having systematic education so that people learn about home modalities (and how they might impact their lifestyles) just continues it all…

Every type of treatment for ESRD–transplant included–has a cost-benefit analysis that is probably different for each person, but it’s not right that most people never get an opportunity to even find out that there are other options besides in-center.[/QUOTE]

Dori;

Guess you are correct in a sense where the mighty $$$$$$ speaks louder than the patients needs… for a better quality of life…
Why don’t in center social workers and staff have access to material that shows the different modalities so that they can console new patients and their families??? I feel that if they took the time and went to patients homes and talked to them and at the same time scout the residence to see if it was possible to have home treatments. I think you would see more people considering home treatments. PD or Home Hemo would be better for all including the INSURANCE companies and Medicare (Government)… Reduction in medications, routine monthly Dr check-ups, minimum Hospitalization…(Since on NNHD only hospital visit was outpatient to replace the cathater because of a broken clip… that’s twice in 7 years).
Also the training for home dialysis needs to some how be standardized throughout the industry. I feel that the training needs cover more than just how to set-up and run the machine…and problems with the machine. We were fortunate that our training covered a lot of information about dialysis and problems that can happen if dialysis is not performed properly. example: what is air embolism and what do you do for it??? Hemolysis??? Yes, learning these things was scary but as you know if you are careful it might never happen… But you need to know that these things can and do happen so be prepared for any emergency… and have a PHONE that works when power is OUT is a necessity.

HemoHelper

6

[quote=Unregistered;14205]Dori;

Guess you are correct in a sense where the mighty $$$$$$ speaks louder than the patients needs… for a better quality of life…
Why don’t in center social workers and staff have access to material that shows the different modalities so that they can console new patients and their families??? I feel that if they took the time and went to patients homes and talked to them and at the same time scout the residence to see if it was possible to have home treatments. I think you would see more people considering home treatments. PD or Home Hemo would be better for all including the INSURANCE companies and Medicare (Government)… Reduction in medications, routine monthly Dr check-ups, minimum Hospitalization…(Since on NNHD only hospital visit was outpatient to replace the cathater because of a broken clip… that’s twice in 7 years).
Also the training for home dialysis needs to some how be standardized throughout the industry. I feel that the training needs cover more than just how to set-up and run the machine…and problems with the machine. We were fortunate that our training covered a lot of information about dialysis and problems that can happen if dialysis is not performed properly. example: what is air embolism and what do you do for it??? Hemolysis??? Yes, learning these things was scary but as you know if you are careful it might never happen… But you need to know that these things can and do happen so be prepared for any emergency… and have a PHONE that works when power is OUT is a necessity.

HemoHelper[/quote]

[B]
I totally agree with you here…based on what I;'ve seen and the reports coming in from Nxstage Users around looks like the home users need to be kept up to date with their training. I think its the clinics responsibility to hold home patient meetings at least every 2 months so that we can do followups on problems that occur at home. With the recent critical problems with CAR 170s cartrdges, especially the leaks the situation could have been handled more professionally. Insetad, some patients scrambled and went to buy Water Leak Detectors, paying out of their pockets. I think that could have been avoided if the the climic meeting were in place every two months. This is urgently needed and hope Nxstage and clinics are reading this. Next time we don’t want anything worser to happen.

I also agree that social workers should be the main ones to provide the education and materials needed to provide in-center patients with their options. Then social workers can hold group meetings of potential home dialysis patients along with current home dialysis patients.

Advocating oursleves as home patients proves to be hard. The problem is if in-center tech is giving the wrong information then those in-center patients are most likely to believe the staff…why you ask? Cuz they’re the ones who are putting them on the machine…they’re closer to them nearly everyday…[/B]

[quote=Dori Schatell;14197]Hi Gus,

There are definitely fears about home dialysis among folks who are in-center. There aren’t any completed, large, randomized studies of home HD vs. in-center for survival. But there are at least a couple of small, non-randomized ones that suggest that daily home HD survival rivals that of transplant (which is much better than in-center HD). And, of course, Dr. Bernard Charra’s center in Tassin, France, where they’ve been doing 8 hour treatments three times per week for three decades has the best reported survival outcomes in the world.

So, I’d say these folks have it exactly backward.[/quote]

Dori, I think the in-center patients are being given the wrong information, most likely by the techs. If that’s the case, I believe that’s wrong and techs should not have authority on telling in-center patients that home dialysis is deadly…who are they? Techs? I believe that social workers are the ones who should give the information and education…they know the right words to use and I don’t think techs know how to professionally handle and educate in-center patients. I also firmly believe that the options should be available to in-center patients (in-center dialysis, transplant, Home PD, and Home Hemo)…if the clinic doesn’t offer all they should still refer patients to clinics that do…if they don’t educate and let in-center patients know of all the options then they will never know its out there…right now looks like the information is being given in the wrong manner, in a way to cause fear and keep in-center patients from going home. Just my thoughts…observations…

7

1. I believe the Social Workers play an important choice in modality options. I believe the Nephrologist play an even more important role. Right now many Nephrologists are still skepitcal about Nx Stage. They have had years of delightful in-services and training at beautfiful destinations paid for by Fresinius. The Nephrologist Fresinius relationship is very strong made over many. Many older Nephrologists will just continue with what they know and are comfortable with - it works.

The current Nephrology fellows need to be made more aware of Nx Stage an its value to patients.

Patients listen to docotors first then nurses, sometimes dieticians and maybe then social workers.

If a doctor tells a patient that she thinks home hemo will give a person most of his/her life back that patient is apt to listen.

2. I don’t believe in a spectrum of dialysis modalities - starting with PD then going home hemo. I wasted two years on PD. I would have been much better off to have gone directly to short term daily, but it wasn’t really offered at the time. For some PD may work wonderfully and for them they should not switch to short term daily hemo unless at some point we find that short term provides better outcomes.

3. Patients need to educate themselves. It is their lives. They need to take a bigger stake in their own lives. Information provided from any health care provider should be researched, challenged, then accepted. Patients need to use Home Dialysis Central, the National Kidney Foundation, the AAKP and other sources. There is plenty of information available.

Erich Ditschman

8

[quote=TheRiverdude;14208]1. I believe the Social Workers play an important choice in modality options. I believe the Nephrologist play an even more important role. Right now many Nephrologists are still skepitcal about Nx Stage. They have had years of delightful in-services and training at beautfiful destinations paid for by Fresinius. The Nephrologist Fresinius relationship is very strong made over many. Many older Nephrologists will just continue with what they know and are comfortable with - it works.

The current Nephrology fellows need to be made more aware of Nx Stage an its value to patients.

Patients listen to docotors first then nurses, sometimes dieticians and maybe then social workers.

[B]If a doctor tells a patient that she thinks home hemo will give a person most of his/her life back that patient is apt to listen.

[COLOR=Red]
[COLOR=Blue]The social worker is the BIGGEST advantage of having direct communication with patients. For example, its was my social worker who educated me and presented that home dialysis exists, not the tech, not the nurse and certainly not my Nephrologist. Right now, seems that in-center patients are not being given the information that home hemo exists…One reported incident that happened in my area was an in-center patient who asked for home hemo, well guess what…the staff told that patient that it does not exist…later in the months he found out the lies he was given then moved to the center nearby that does offer home hemo…[/COLOR]

[/COLOR][/B]
[B]2. I don’t believe in a spectrum of dialysis modalities - starting with PD then going home hemo. I wasted two years on PD. I would have been much better off to have gone directly to short term daily, but it wasn’t really offered at the time. For some PD may work wonderfully and for them they should not switch to short term daily hemo unless at some point we find that short term provides better outcomes.

[COLOR=Blue]I don’t have anything against PD, I was offered PD as well BUT later in evaluation it was found that my abdomen was weak so I was not a good candidate for PD. I do however know people who are quite happy with PD…It is a very good option, for some people. I bet from the very first day of dialysis that if you were offered PD and Nxstage you most likely would choose PD, simply to avoid the needles and blood. Now that you have tried PD you now know it wasn’t for you.Would you rather say that PD is deadly? Generally speaking, Home Hemo is deadly?

[/COLOR][/B]
3. Patients need to educate themselves. It is their lives. They need to take a bigger stake in their own lives. Information provided from any health care provider should be researched, challenged, then accepted. Patients need to use Home Dialysis Central, the National Kidney Foundation, the AAKP and other sources. There is plenty of information available.

[B]Erich Ditschman

[COLOR=Blue]The resource are there, but for who…us? The small handful of net users? The people I advocated recently were not net users…the avcrage old fashion folks… and if in-center staff are giving the wrong information that you have a problem there…

[/COLOR][/B][/quote]

9

Gus,

What do you mean by deadly?

Erich

10

[quote=Gus;14196]The point is I think rumors are running around that home dialysis is deadly…

Fact or opinion?[/quote]

The fact is that very few people, home or incenter, die while actually on dialysis. Of the people who do die while actually on dialysis I would predict that it is proportionately more common among people who die incenter.

So that whole framework is wrong. What kills people who have CKD5? Heart disease, infection, stroke, vascular degeneration. Again people rarely die during dialysis. People do not die because of the dialysis process, people die because of the disease process. And what do we all believe slows the disease process and makes for fewer and/or less sever symptoms? More dialysis.

That is my touchstone. More dialysis is “safer”. The more dialysis you receive the safer you are. I think it has been proven to be true of people who dialyze 6 times a week nocturnally (using standard treatment parameters) and I think it will be proved to be true incrementally. I think we will eventually conclude that each increase in length and frequency of dialysis matters more in figuring how safe dialysis is overall then does who is doing the dialysis and/or where the dialysis is done.

To summarize, more frequent hemodialysis is “safer” than three times a week hemodialysis, therefor to be safe one must figure out a way to hemodialyze more frequently. Right now more frequent dialysis is only available at home, so to be safe, go home and dialyze. Three times a week dialysis is deadly.

11

I wish everyone on dialysis could get and understand this message. So many of them sadly believe that 3 days a week “must be enough” if that’s what they’re offered, and that the staff “must know what they’re doing” since they work in the center, etc. More is better. Duh!

12

Dori, what would you think on a strategy that would work out to convince in-center patients that more frequent diaysis at home is healthier for them?

For example, If I have 3 close in-center that I spoke to that think that 3x a week is the way to go what do you think will change their minds? Or is this case just another deadend?

13

I’m not sure, Gus, but that’s a key question. I suspect that the issue is complex enough that one message isn’t going to do the trick–we really need to be offering a fair AMOUNT of education to folks on dialysis so they can see that what they gain from the extra days a week more than makes up for losing those “days off” that can actually be killers (especially the 2-day dialysis “weekend.”)

I’d love to know what persuaded folks here to go from 3 to 5 or 6 days or to nocturnal.

14

I think it comes back to: each dialyzor must identify their own goals. Depending on those personal goals you can then find the right treatment.

15

[quote=Dori Schatell;14255]I’m not sure, Gus, but that’s a key question. I suspect that the issue is complex enough that one message isn’t going to do the trick–we really need to be offering a fair AMOUNT of education to folks on dialysis so they can see that what they gain from the extra days a week more than makes up for losing those “days off” that can actually be killers (especially the 2-day dialysis “weekend.”)

I’d love to know what persuaded folks here to go from 3 to 5 or 6 days or to nocturnal.[/quote]

[B]Probably so, I think it takes action and practice of reminding in-center folks that more frequent dialysis is healthier. The best I can probably aim for is now and then try meeting these folks and having the discussion about dialysis at home and in-center.

Anyway, you ask how were we pursuaded to make the switch, Well, here’s my take…it was in the early 80s and was in my teen years. My social worker and I always chatted after each dialysis treatment…through time she spoke of me about home dialysis and PD, but could NOT be convinced until maybe after a few years. My first goal was to try PD but later in evaluation it was found that I was not a good candidaqte for PD…believe it or not but later throught the months I kept making appointments with surgeon and Neph on trying to let me try PD, no matter what! They said NO!!! Lol,hehehehee …The main reason to choose PD over hemo was the absent of needles and blood…for the rest of my life I didn’t want to deal with seeing blood or handling pain from needles…finally, time has come then I finally said yes, lets try Home Hemo…but keep in mind that at that time more frequent dialysis was NOT in place…we only had the choice to do 3x per week long hours (Nocturnal) …problem was that long hours on nthe machine with sharp needles was not an option, so I only did 4hours 3x per week. This was with an old Century Cobe 2 machine…loud and noisy…also had a very loud R.O. and carbon tanks…the maintenance of the whole system was incredible and risky…had to use Formadehyde monthly and was quite risky. With almost 2 years at home doing it I finally went back in-center…

Anyway, if you ask why I went back in-center…here’s the reason.

  • 1st …My partner (sister) moved on
  • 2nd…Maintaining the system was too much.

I did manage to do it all on my own for a month BUT my family harshly got me to go back. Oh well…

Few years later, here I am at home again, but now better than ever!..Muhahahaha :)[/B]

Bill, who introduced you to home dialysis or more frequent dialysis? Did it take time to make the switch or were you convinced immediately?

16

I was identified as a good candidate for home dialysis early on but I wasn’t buying. I felt like I was doing fine on incenter and I liked being able to compartmentalize dialysis. I maintained the illusion that dialysis was separate from my “real life”.

After 11 years incenter I switched to high dose home hemo as soon as my center offered the option. I had advocated offering high dose dialysis as a Trustee so I felt that I should walk the walk if I was going to talk the talk.

Once I tried more frequent dialysis I realized that I really did not feel that well on an incenter schedule. After 11 years I had lost my measure of health and adjusted my expectations to how I felt. I got use to feeling underdialyzed. Remember Plato’s Allegory of the cave I think it pretty well sums up what we’re trying to describe. “Once enlightened, so to speak, the freed prisoner would not want to return to the cave to free “his fellow bondsmen,” but would be compelled to do so.”

Gus I think you are trying to get your fellow dialyzors out of their three day a week caves.

17

Home dialysis is a choice that reqiures:

  1. Dedicated home support (Helper)
  2. Location to preform (room clean, and modified when necessary)
  3. Patient willing to dialyze at home (having the mind set; to have a better quality of life)
  4. $$$$$$$$$$$$$ yes, pay for extra treatments (Insurance helpful, centers willing to subsidize extra treatments)
  5. Center that offers Home dialysis programs.
    You can educate the people with end stage renal disease all you want but the above needs have to be considered before anything will happen.

PD is better than Incenter treatments (Baxter’s HomeChioce machine)… and Home Hemo Dialysis is even better… and now with the improvements in Machine…Ala NxStage System One and PureFlow or bags. It is easier to use, no water and system to disinfect, training and set-up faster, and portable… Travel becomes another option without having to make arrangements with your destination dialysis center (That is if there is one close by).

HemoHelper