I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: MooseMom on November 09, 2014, 09:48:59 AM

Title: Paths to the future for ESRD patients
Post by: MooseMom on November 09, 2014, 09:48:59 AM
Let's face it.  Dialysis as we know it is expensive, time consuming and inefficient.  It brings its own share of woes.  It may keep an ESRD patient alive, but just barely.  If you're lucky enough to be able to do home dialysis, sure, you'll get better results, but you still have to fight to get supplies, and it still devours your time.

Not everyone can get a transplant, and we all know that even if you can, it's just another treatment that has its own obstacles and brings its own worries.

Most IHD members are smart people and are eager to be well informed, so I'm sure many of you have done research on what may lie ahead.  I cannot believe that dialysis as we experience it today is the way forward.  There is stem cell research, wearable artificial kidneys, 3D printing of human organs, medications that work to preserve the function you have and other medications that strive to enhance residual function just enough so that the patient can stay well enough to avoid dialysis.  All of these options are being explored.

So, in your mind, what do YOU see as the most hopeful and realistic future treatment(s) for patients with ESRD?
Title: Re: Paths to the future for ESRD patients
Post by: kristina on November 09, 2014, 10:20:27 AM
I would not be surprised if a real cost-effective-patient-friendly treatment for ESRF patients is still being worked out & being researched,
because the common treatments are much too expensive for any country to pay in the long run ...
... There are many more ESRF-patients world-wide these days & the costs in different countries to treat ESRF-patients sufficiently,
are still much too expensive world-wide... and better, more cost-effective ways are being researched world-wide ...
Therefore, I would not be surprised if the ESRF-treatment for the future is still busily being worked out and researched...
Title: Re: Paths to the future for ESRD patients
Post by: obsidianom on November 09, 2014, 12:35:32 PM
Let's face it.  Dialysis as we know it is expensive, time consuming and inefficient.  It brings its own share of woes.  It may keep an ESRD patient alive, but just barely.  If you're lucky enough to be able to do home dialysis, sure, you'll get better results, but you still have to fight to get supplies, and it still devours your time.

Not everyone can get a transplant, and we all know that even if you can, it's just another treatment that has its own obstacles and brings its own worries.

Most IHD members are smart people and are eager to be well informed, so I'm sure many of you have done research on what may lie ahead.  I cannot believe that dialysis as we experience it today is the way forward.  There is stem cell research, wearable artificial kidneys, 3D printing of human organs, medications that work to preserve the function you have and other medications that strive to enhance residual function just enough so that the patient can stay well enough to avoid dialysis.  All of these options are being explored.

So, in your mind, what do YOU see as the most hopeful and realistic future treatment(s) for patients with ESRD?
My hope is that we can someday grow kidneys from body tissue or stem cells for patients. That would end dialyisis and organ transplant. 
Title: Re: Paths to the future for ESRD patients
Post by: del on November 09, 2014, 12:45:34 PM
I am hoping that too, obsidianom.  It would be so good to be able to have a treatment other than dialysis and transplant.  Maybe it will be like the episode on Star Trek where all was needed was a pill if your kidneys failed!!  Seriously thought it would be good to have a kidney made from your own cells so that there would be no chance of rejection.
Title: Re: Paths to the future for ESRD patients
Post by: MooseMom on November 09, 2014, 02:58:49 PM
Obsidianom, do you think the technology for stem cell "regeneration" is further along than, say, something like this...?

http://www.medicalnewstoday.com/articles/266471.php  (wearable artificial kidney)?

Or, say, 3D printing a "scaffold" on which to build a new functioning kidney?

http://www.livescience.com/41480-3d-printed-kidneys-take-small-steps.html

I just don't see much effort being put into improving "conventional" dialysis.  Yes, there are now therapies like NxStage, but you still have to sit in a chair with needles in your arm.  I don't see any realistic hope in, say, expanding nocturnal hemo or allowing patients to go in center for more than the usual 3 times a week.  It seems as if no one is interested in improving upon what we have but is instead moving on to new technologies.  But I don't really know, so I am wondering what you all think.  Where do y'all see the most future innovation coming from?
Title: Re: Paths to the future for ESRD patients
Post by: MooseMom on November 09, 2014, 03:06:18 PM
Oh, I forgot to mention the field of regenerative medicine...

http://jasn.asnjournals.org/content/17/9/2390.long

Have any of you read any more about this?  If so, thoughts?  Realistic?  Worth further research?

(I have to admit I have not read this whole article yet.)
Title: Re: Paths to the future for ESRD patients
Post by: jeannea on November 09, 2014, 09:21:47 PM
Back in the late 90s, there was some really promising research into growing kidneys in pigs. I don't know the exact science. They were somehow supposed to use some of your cells (not sure how) and then you just had to wait long enough for the pig to grow up which isn't forever. There was a problem with two sugars on the surface of the pig kidney that could cause rejection problems. They had gotten rid of one sugar and were working on the other. I never heard if it failed because of that problem or because of xenophobia. A lot of people I mentioned that to said it was icky and they could never have a pig kidney inside them. I said I'd take the pig kidney and the meat too.
Title: Re: Paths to the future for ESRD patients
Post by: SooMK on November 10, 2014, 09:34:03 AM
I think we may need all of these approaches. Treatment is pretty much the same no matter what causes your ESRD now. Perhaps going forward one of these current experimental treatments will work for kidney disease with one cause and another solution will work if your KD is caused by something else. I am grateful that there is progress or effort being put forward on many fronts. It does seem that the immediate future for dialysis patients doesn't have any big changes on the horizon. When I mentioned progress in treating kidney disease to my transplant coordinator he said "there won't be any changes in your lifetime" (then realizing that might be a bit harsh he amended that to "or mine"). Whatta guy. My children have a 50% chance of getting my KD. I hope my coordinator is wrong.
Title: Re: Paths to the future for ESRD patients
Post by: iolaire on November 10, 2014, 09:53:17 AM
I expect by the time I'm an old man (I'm 40) there will be exciting new developments.  From everything I've seen now is much too early to start thinking about them personally.
Title: Re: Paths to the future for ESRD patients
Post by: cdwbrooklyn on November 10, 2014, 12:34:36 PM
My theory on this is that things have changed since dialysis first came out.  Back in the days when dialysis was first introduced, it was done manually.  A nurse or technician had to turn a barrel for 8 hours so the patient can get his or her blood clean.  Now that is not the case.  Yes it changed since then and who to say that it will not continue to change.  That’s where our younger generation comes in.  Babies are being born every minute.  One of those babies will come up with a better way to dialyze in the further.  It has gotten better and it will continue to get better because the medical field likes making money. 

Also, I don’t think that I am barely making it.  I may run into some problems here and there but I’m living like everyone else.  Even though sometimes I don’t like getting on the machine, I’m very happy that I can get on one that is in my house.  I don’t have problems with supplies.  Sometimes I have too many supplies and have to denied by next delivery.   I really wish I didn’t have to go through this but I thank God that He is allowing me to live.  There are so many people I’ve cared about and loved that passed away base on their illness and none of them were on dialysis.   I wish that there was a pill for every illness and it can cure you once you take it.  Wishful thinking, that’s what keeps me going.  I’m always wishing and hoping things will change and I will get better. 

Anyhoo, we should have a reality TV show called live with ESRD showing the world that although we are on dialysis we still live our lives and have people that truly love us.

Just my opinion.   8)
 
Title: Re: Paths to the future for ESRD patients
Post by: amanda100wilson on November 10, 2014, 01:00:38 PM
The main reason research on pigs kidneys stopped is more because they were concerned about cross-species transfer of diseases which we would have no immunity against.  I have heard that this research may be starting up again.if they could clear out all the viruses etc. turn off the things that would cause rejection, this would be the best way to go, short of manufacturing organs from our own cells. Three D printed kidney also sounds good.
Title: Re: Paths to the future for ESRD patients
Post by: MooseMom on November 10, 2014, 01:29:11 PM
Cdwbrooklyn, how do you see dialysis as having gotten better?

Off the top of my head, I see the invention of NxStage as a big step forward, but in which other areas has dialysis improved for the patient?

You are a shining example of a dialysis patient who has managed to live a more "normal" life than most, but do you think you are the norm?  I've seen the lives of my mother and my aunt absolutely ruined because of dialysis.

Title: Re: Paths to the future for ESRD patients
Post by: Michael Murphy on November 10, 2014, 04:52:46 PM
The fact is we are on the cusp of major changes in the Dialysis field.  A new generation of machines and filters is in testing and should be out in the next 3 to 5 years.  Kidneys are being created and emplanted in rats and are functioning.  Cloned kidneys are a reality and from I have read 10 years out.  Implantable mechanical kidneys are being developed and are again 10 years out.  With the money floating around dialysis research is continuing and somewhere somehow I believe the future is going to be better for the patients.  However the way my luck runs two days after I die this will all be announced.  In the mean time I am above ground so there is always hope.
Title: Re: Paths to the future for ESRD patients
Post by: noahvale on November 11, 2014, 01:42:41 PM
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Title: Re: Paths to the future for ESRD patients
Post by: noahvale on November 11, 2014, 01:48:20 PM
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Title: Re: Paths to the future for ESRD patients
Post by: MooseMom on November 11, 2014, 02:58:08 PM
Noahvale, in reading your post for which you provided the link, I take it that you believe that implantable artificial kidneys is the technology that is furthest along in development?
Title: Re: Paths to the future for ESRD patients
Post by: noahvale on November 12, 2014, 10:33:41 PM
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Title: Re: Paths to the future for ESRD patients
Post by: MooseMom on November 13, 2014, 09:31:05 AM
I agree with you, Noahvale.