Amyloidosis info

Check out this website about the positive effects of home hemo on amyloidosis:

http://www.nxstage.com/our_community/chronic_community/medical_professional/upload/SECTION_FIV

correcting address to:

Doesn’t this poster show that small molecule clearance improves as dialysate flow rates increase? And that at all flow rates increased clearance is associated with an increased UFR due to convection? This poster seems to argue for the approach taken by the PHD or am I just missing something? And if small molecule clearances increase with dialysate flow rates wouldn’t increased dialysate flow rates and increased convection, improve large molecule amyloid clearances?

Terry and Heather’s link
http://www.nxstage.com/our_community/chronic_community/medical_professionals/upload/SECTION_FIVE-Amyloidosis-2.pdf
also seems to support the aproach of reusing the blood tubing and dialyzer

There is some evidence that amyloidosis develops more slowly in patients dialyzed with high flux biocompatible membranes and/or convective therapies, but weekly patient generation of B2M exceeds removal in conventional therapy schedules.

What about when combined with unconvential therapy schedules? It would be helpful to know the marginal impact of biocompatability.

I thought I would bring your comment back to this thread - it wasn’t clear to me standing on its own.

T&H did you mean the ASN poster or the article? I think the article speaks to the benifits of more frequent dialysis - I think longer pro’ly also helps so biocompatable daily nocturnal is likely to be the best strategy for avoiding amyloid.

Please read this…

i think so to that the more you do better chances was happy to find info on this made a big difference in my attitude

I think that everything in the literature and even just logic suggests that you need long treatments, not just frequent short treatments to remove these proteins effectively - at least with the current state of dialysis technology. The current dialyzers are thought to be better than those in the past, but it seems like there’s just no substitute for treatment time.

Daily nocturnal hemodialysis = frequency and time, but with inconvenience of sleeping while on dialysis almost every night (5 or 6 nights). No travel with dialysis machine with current state of technology. Low UF rate every night even with huge weight gains because UF is spread over 7-8 hours.

Short daily hemodialysis = frequency but not time (it’s same total weekly treatment time as conventional hemo). Short is nice, but it does use up waking time during day or evening. High UF rates unless you keep to a strict fluid limit. Could make treatments longer, but most would consider it inhumane to do long treatments permanently every day during waking hours (which is why nocturnal was invented).

To be frank, many of you seem all excited to get on home hemo for a while, but then you start whining and obsessing about every little inconvenience it poses. I find this is more the case with people who have not spent significant time doing conventional hemo in a dialysis centre. Those of us who have tend to count our blessings, because the advantages of daily home hemo (especially nocturnal) are so outstanding compared to conventional hemo that it would be unthinkable to do anything else. In that perspective, spending an hour setting up a treatment is nothing, disinfection cycles or whatever are insignificant. These things are very significant compared to not being on dialysis at all, but that’s not an option for us unless we get a kidney transplant or we’re prepared to go on palliative care.

When it comes to treatment of anything, we make choices between advantages and disadvantages, risks versus benefits. It’s the same with dialysis. When we make the choice, we can weigh things in favour of convenience, or we can attach more importance to effectiveness. We can’t have everything. When we choose short daily, we know we get frequency but not time, and one trade-off is less effective removal of these amyloid proteins. It may or may not be important. For example, if you are on the waiting list for a kidney and you don’t expect to have to wait long, then maybe short daily is more than enough, all things considered. Heck, even conventional hemo might be Ok in that context. Or it might be that you are one of those patients who just can’t sleep on nocturnal because of frequent alarms or whatever. If that’s the case, than short daily might be a better choice for you. If being able to travel with the machine is important to you, then you choose the system that can give you that, even though there might be some trade-offs. Short treatment times, travel or better dialysis of amyloids. It’s your choice.

As technology continues to evolve, the time might come when we don’t have to make the choice because one machine will be able to do everything. Maybe by that time, we won’t even need dialysis because we will be able to grow replacement kidney tissue. The future is exciting, but we have to live in the here and now, and that involves making choices.

By the way, let me emphasize that I’m not judging anyone’s particular choice. There is no one choice that is better than the other. It depends what we as individuals are looking for from our dialysis. The one area in which I do differ from some of you is that I choose the dialysis. I don’t choose the machine. I don’t care what the make of machine is, as long as it can do the dialysis I want.

Pierre

Though its kinda late for me… My hands are messed up, but hey! I can still push these little buttons…hehehe :lol:

I have hope that a better dialyzer evolves or at least a treatment or therapy or maybe even a medicine to halt it…

But really, having a real kidney working in me would make me quite happy… :smiley:

Are you on a waiting list, Gus? I don’t recall. I know I’ll be glad when I finally make it to the top of the list! I won’t mind giving up any form of dialysis when I get the call, that’s for sure.
Pierre

Was nocturnal invented or discovered or rediscovered? Pierre, I think your language is getting sloppy around the idea of dialyzing more than two hours daily during the day. Inhumane? Does dialysis ever show pity or compassion? Do you (or Frank – who’s he?) require dialysis to exhibit pity? In Tassin France they have been dialyzing people for eight hours for decades – would it be compassionate to have dialyzed those people for four hours instead?

I can not understand your position of drawing a line at two hours. What is so magical about two hours? Why should your preference be considered the standard for most?

I’m not drawing a line, I’m just using the commonly understood meaning of short daily and daily nocturnal. I didn’t invent this. This is what the literature and most short daily programs use. I’m really only talking about long vs short. I didn’t even mention actual times in my post. I don’t care what time of day the longer dialysis is done. If you do longer during the day and it’s not a problem for you, fine. However, I do think that if we told people already on conventional dialysis that they would have to do 4 hour treatments at home 6 days a week, a great many would tell us to go and get stuffed. The incentive for most people is not just doing it at home, but the fact that it’s short. So, I’m just using the current terminology, and I don’t think I can be criticized for doing so.

Look, I know I can be a little blunt sometimes. That’s what comes with old age :slight_smile:

Sorry if that offends anybody. I wish you all the best of luck doing whatever you are doing, be it conventional at home, short daily or daily nocturnal… and anything in between. I think we can all just be happy that we have these options available to us.

Pierre

Hey guys, be aware that this is a complex issue here and must stress that all of you are in research and there are no guarantees that you will live a long satisfying life on dialysis…

It won’t be for an other several years till many of the questions we ask here will be answered, but rest assured that the dialysis we have now is a big step towards a better dialysis tomorrow.

All of us here are the key to bettering dialysis for the future ahead. I think we’re a fortunate bunch here beeing able to share and talk our experiences beeing at home is somethingf very special which helps us cope and continue our mission as a dialysis patient. :smiley:

Just keep your hopes high and enjoy the best as much as you can while you can…

Lets get Rolling!

short daily hemodialysis = 6 sessions per week; 2 – 3 hours

http://www.multi-med.com/homehemo/hemoint01/piccoli4/Piccoli4.htm

Hi y’all,

This is an interesting thread! Bill’s right that nocturnal hemo predates short daily–probably by about 40 years, since it was one of the first types of treatment that was done with the Kiil dialyzers. (You can see these in our Virtual Dialysis Museum at http://www.homedialysis.org/v1/equipment/museum.shtml. Cool, hey?

I suspect–and I believe there are already some early, small studies showing this–that nocturnal dialysis will prove to remove more of the beta-2 microglobulin that causes amyloidosis, just as it removes more phosphorus. The question is, even if that proves to be the case, will such a benefit be so compelling that everyone should do nocturnal–or even that other forms of dialysis should fade away because they’re not as good? (Don’t jump on me, folks, I’m being hypothetical, here!).

I doubt it. I think each adult should have the right to choose a form of treatment that best fits his or her lifestyle, even if that means a tradeoff between lifestyle and the best possible clinical outcomes–as long as they know what the tradeoffs are when they go in.

i am so happy we could share our thoughts on this. if you are doing 2 hrs or 8 like myself its all good. i would love to do 2 hrs but to big. decided to get the work up for a kidney transplant. have a lot of brothers and sisters who dont mind sharing a part of themselves. this has really healped me so thanks it made me decided to go for the transplant

[quote=“Pierre”]

To be frank, many of you seem all excited to get on home hemo for a while, but then you start whining and obsessing about every little inconvenience it poses. I find this is more the case with people who have not spent significant time doing conventional hemo in a dialysis centre.

Geez Pierre. That was a sweeping generalisation! I think I should feel a bit taken aback as I was one of those who went straight home after training. I haven’t read anyone who has whined AND obsessed, maybe just whined OR obsessed (no more than anyone else on this forum at times particularly the obsessing bit).

I thought we were just discussing things in the spirit of friendship and a better life and increased knowledge for us all.

:shock:

I think I am guilty of obsessing a bit on the Fresni compared to NxStage but if put into context that wasn’t what I was intending to do. Our home unit is starting a daily program. I was obsessing over every little thing that we had to do because these all add up and I was comparing in my mind what the patients would go through using the NxStage as compared to the Fresenius and to be honest for short treatments I don’t think the Fresenius is the most convenient for the patients. There will be no choice for the patients to do nocturnal on the Fresenius. It is strickly a daily program. The PHD isn’t an option as they refused to provide service in our area. However, it has been several years since we went the in-center route and maybe the patients will consider the Fresenius to be a blessing. At any rate, I was going to argue the case with the nephrologist on his choice of machine for short daily in behalf of the patients but have decided it’s probably not worth it. That was my only reason for the obsession. Personally, I’m sticking with Fresenius and nocturnal regardless of what they do for daily.

I hope we haven’t lost Pierre over this. I’ll miss his input.

Hi y’all,

I just ran into a research paper that showed significantly higher removal of B2M (the molecule that causes amyloidosis) during nocturnal hemo done 5-7 nights/week.

The paper is:
– Uldall R, Ouwendyk M, Francoeur R, Wallace L, Sit W, Vas S, Pierratos A. Slow nocturnal home hemodialysis at the Wellesley Hospital. Adv Renal Replacement Ther. 3(2):133-136, 1996.

The researchers found that weekly removal of B2M with NHHD was 657 mg, while weekly removal of B2M with conventional hemo was only 173mg.

That’s interesting, so that means it can be measured how much is taken out…

I have a gut feeling and urge to find out how much is beeing taken out on my therapy weekly, I hope I get those results… :roll:

I also wonder how much is taken out with normal kidneys…

Isn’t the normal range for working kidneys…
Serum: less than or equal to 2.7 g/mL