Ideas for a new advocacy group to cure CKD - please help

[Athena]

For all those who have ever read any of my posts, I am someone in pre-dialysis CKD who certainly wants to avoid dialysis. I totally share the spirit of this site - which is that no one likes or wants to be dependent on dialysis (or more precisely, to be in end-stage renal failure).

I have searched far and wide to find any promising new medical research initiatives that may prevent or delay a CKD patient from ever reaching ESRF and have found very little. Kidney advocacy groups only seemed attached to the notion of better dialysis or transplants as the answer. But very few people (outside of elite research institutions) even stop to consider that a cure or new therapies that might stop, halt and even repair damaged kidneys is even possible, much less something that medical science should be looking to discover. If patients, carers and kidney advocacy groups don't demand better medical treatments, who's going to be persuading governments and medical science to find these better treatments? No one!

With millions and gazillions of people worldwide being at some stage of CKD, isn't it time a new revolutionary focus was made on actually preventing so many people from ending up on dialysis and actually finding ways to keep people's kidneys healthy and strong in the face of so many threats that seem to exist?

I welcome any constructive comments and opinions about how such an advocacy group might be formed and how it might operate, or whether such groups already exist. All ideas, thoughts and opinions on this topic are welcome.

[Charlie B53]

Regeneration of scar tissue may not be impossible, but very near it.

I like to think that man can eventually find a way to overcome most any problem.  But this has got to be one of the toughest.

I don't remember where I read it, but it was within the last couple of months that I saw a short note on research that is being done on this very subject.  And they are having some small measure of success.   No way are they willing to advertise this as they do not want to build false hopes in so many current renal patients literally dying on dialysis from other medical issues also brought about from renal failure.


Hopefully, someday.  Just not yet today.

[Athena]

Regeneration of scar tissue may not be impossible, but very near it.

I like to think that man can eventually find a way to overcome most any problem.  But this has got to be one of the toughest.

I don't remember where I read it, but it was within the last couple of months that I saw a short note on research that is being done on this very subject.  And they are having some small measure of success.   No way are they willing to advertise this as they do not want to build false hopes in so many current renal patients literally dying on dialysis from other medical issues also brought about from renal failure.


Hopefully, someday.  Just not yet today.

Charlie, for once, I strongly disagree with you.

The only reason this "seems" like one of the toughest is simply because they are only, at any point in time, doing a pitiful amount of research on combating kidney disease (compared to other deadly diseases). And why are they doing next to nothing? Because unlike many other disease sufferers, we would have to be one of the most silent patient groups on the face of the earth. I think the poor dementia folks have more of a voice and public awareness of their cause than what we have!

I think you're right Charlie when you say that man can eventually find a way to overcome almost any problem. But man firstly has to even be aware of what the problem exactly is that needs to be solved. Prevention of fibrosis/scarring from progressing is achievable, I strongly believe. There is a lot of medical research that is occurring on this front (although not even close to being enough of course). This one is achievable and probably not even close to be as hard as many people are led to believe.

Regeneration of diseased kidney tissue is also a scientific possibility through stem cell based regeneration research that is being conducted as well. There is in fact a sort of race amongst stem cell researchers to bring this new medical technogy to actual human trials. It's happening alright.

The biggest problem I find in reality is other kidney patients, especially those who are struggling with ESRD. Those in CKD are lulled into a kind of paranoid false hope waiting game where they believe they will be taken care of when they reach end-stage (through hopefully a successful transplant or a better-than-expected dialysis treatment, neither of which can be guaranteed for everyone). The reality of end-stage is a far cry from having kidneys that work sufficiently well to keep you alive and functioning normally.

For me personally any advocacy/lobbying that takes place now may only be to benefit future generations that includes our offspring and those of our relatives and friends. Surely that is enough incentive to demand something be done to tackle this awful disease? Who wants to see another person go through what we have already been through and what we know lies ahead?

[kickingandscreaming]

As I said in another thread (IDK where) ESRD lacks a celebrity to call attention to us.  It seems that all celebs who have the disease are either very quiet about it or easily get TX (because they're celebs?) and go on with their lives.  Parkinson's has Michael J. Fox who has a foundation that does research.  We have no one out there drawing the spotlight.  I realize that is no substitute for cutting edge research, but it is often the magnet for it. Otherwise, most of us sit quietly tethered to our machines going through tons of tax payer money for our treatment.  In this political climate, rather than expect compassion from the taxpayers (and monied elites) we'll probably get a social darwinian solution to let us die and get us off the "payroll."  You'd think that the amount of money going toward our treatment would be incentive enough to start looking for real answers.

[Charlie B53]

So we need a 'Celebrity Membership Drive'.   Maybe also have a televised telethon.

I mean, can't we demand equal air time?      Aren't we a 'discriminated Group'?

I haven't the foggiest idea how, or where, to get started.


Maybe a meeting?     I know a little hideout in the woods. (It's called 'the Hideout').    Tomorrow, Wed night is steak nite,  Friday is also, and bigger, but MUCH louder, NOT good for any meeting.


LOL    Reservations NOT required, shirts and shoes are.   Pants too.   Unless you look good in a skirt.  I don''t.

Sorry, couldn't help myself.

[kristina]

For all those who have ever read any of my posts, I am someone in pre-dialysis CKD who certainly wants to avoid dialysis. I totally share the spirit of this site - which is that no one likes or wants to be dependent on dialysis (or more precisely, to be in end-stage renal failure).

I have searched far and wide to find any promising new medical research initiatives that may prevent or delay a CKD patient from ever reaching ESRF and have found very little. Kidney advocacy groups only seemed attached to the notion of better dialysis or transplants as the answer. But very few people (outside of elite research institutions) even stop to consider that a cure or new therapies that might stop, halt and even repair damaged kidneys is even possible, much less something that medical science should be looking to discover. If patients, carers and kidney advocacy groups don't demand better medical treatments, who's going to be persuading governments and medical science to find these better treatments? No one!

With millions and gazillions of people worldwide being at some stage of CKD, isn't it time a new revolutionary focus was made on actually preventing so many people from ending up on dialysis and actually finding ways to keep people's kidneys healthy and strong in the face of so many threats that seem to exist?

I welcome any constructive comments and opinions about how such an advocacy group might be formed and how it might operate, or whether such groups already exist. All ideas, thoughts and opinions on this topic are welcome.

Hello Athena,
Your thoughts are most interesting and very welcome.
... I remember trying something similar years ago and I experienced,
that even though many people suffer from very similar kidney-diseases,
their personal circumstances often differ quite immensely and that can make "things" a bit more difficult ...
... At the time I was a student at University and another girl I knew who - like myself - suffered from an incurable kidney disease
wanted to succeed in having a normal family-life with children etc. despite her failing kidney-health,
whilst a third girl wanted to ignore her medical situation altogether in the hope her kidney-problem would eventually "go away" ...
Mind you, my experiences were long before the Internet "came along" and hopefully, with the help of the Internet it can be set up much easier...
... I send you my best wishes in the hope you succeed and I also want to send you my good luck wishes.
Many kind regards from Kristina.

[Athena]

Regeneration of scar tissue may not be impossible, but very near it

Hopefully, someday.  Just not yet today.

Charlie, you know the old saying: "Tomorrow never comes". And we certainly won't get a cure for CKD tomorrow while we stay silent about it today!

How long where you aware of being in pre-dialysis CKD? I'd really like to know hear from as many people as possible about how long they have lived with CKD before starting dialysis/transplant.

I think in most cases, the wait was for many years.

[cattlekid]

I found out that I had IgA nepropathy 10 years before my kidneys finally failed and I had to start dialysis.  Who knows how many years I had actually had the disease before I was diagnosed.

How long where you aware of being in pre-dialysis CKD? I'd really like to know hear from as many people as possible about how long they have lived with CKD before starting dialysis/transplant.

I think in most cases, the wait was for many years.

[kickingandscreaming]

It was in 2009 that I learned that my creatinine was rising--2.1.  It took me until this past Thanksgiving when a case of pneumonia landed me in the hospital and launched my "career" as a dialysis person.  I had been hanging around around 10% for 4 years before finally hitting 6% and starting D.

[hatedialysis2]

I have searched far and wide to find any promising new medical research initiatives that may prevent or delay a CKD patient from ever reaching ESRF and have found very little. Kidney advocacy groups only seemed attached to the notion of better dialysis or transplants as the answer. But very few people (outside of elite research institutions) even stop to consider that a cure or new therapies that might stop, halt and even repair damaged kidneys is even possible, much less something that medical science should be looking to discover. If patients, carers and kidney advocacy groups don't demand better medical treatments, who's going to be persuading governments and medical science to find these better treatments? No one!

Advocacy groups with celebs and high awareness like Parkinson with celebrities like M. J. Fox, and cancer like Gwyneth Paltrow ?     As far as I see there are billions of dollars donated for research for well over a decade.      How is that going?   Less screening for women?  more chemo?  no cures for cancer.  no cures for parkinsons.
Here is a little perspective on cancer survivor timeline   https://report.nih.gov/nihfactsheets/viewfactsheet.aspx?csid=75

BTW  There are folks who have generously shared their success in increasing their GFR thru simple diet and lifestyle changes.   You will not find any advocacy for that because there is no money to be made.   

[hatedialysis2]

Below is an article that reiterates the topic of this post:

"Kidney disease doesn’t get the attention, funding or concern associated with cancers of the breast or prostate. But it actually kills more Americans — 90,000 a year — than both malignancies combined.

Even when it is not fatal, the cost of treating end-stage kidney disease through dialysis or a kidney transplant is astronomical, more than fivefold what Medicare pays annually for the average patient over age 65. The charges do not include the inestimable costs to quality of life among patients with advanced kidney disease.

Much is known about who faces the greatest risks of developing chronic kidney disease and how it can be prevented, detected in its early stages, and treated to slow or halt its "   

you can click on the link below to read the rest of the article


http://well.blogs.nytimes.com/2013/07/15/kidney-disease-an-underestimated-killer/?_r=0

BTW, diet and exercise and early screenings is suggested as key for treating most CHD conditions.   

[kickingandscreaming]

I think one of the reasons that CKD is an "orphan" in the field of research money allocation is the demographics and politics involved.  A very high % of CKD patients are people of color and people of very modest financial means.  So it's very easy for the powers that be to write them/us off.   Or even worse, to blame the victim.  If we were a "tonier" group overall, there might be more concern about us and more money flowing to research to help us.  In this very uncompassionate political climate--social darwinist at best--it probably won't be long before our treatment is no longer supported.  And we are just left to die in the dust.

[Charlie B53]

Unfortunately I do not know what a 'scarred' kidney looks like, nor how it 'feels' to my touch.  I only know the effects that it has had on my body, an the vast improvement PD is doing for me.

I say this as I need to know so that I may compare kidney scarring to other body scars that I am well familiar with.  How the flesh heals along that contact line where it had been cut, torn, or otherwise damaged and re-grown together, adhering together but never to have it original appearance or function, the stretchiness and flexibility of normal flesh.

I spent months in Physical Therapy after each shoulder surgery working hard to regain function of both shoulders.  My Surgeon decided he could do a much better job of reshaping the shoulder sockets, removing the bony spurs that limited my movement, causing such exquisite pain, making those sometimes big drops of water leak out of my eyes while I laugh so stupidly.   Using a small wooden dowel that had the end sanded off, rounded, the Therapist would forcefully and deeply more or less 'stir' all along the line of scar tissue forcing the stiff scarred flesh to stretch.  Making the not-so-resilient flesh more resilient.  Sort of like working an old piece of dried up leather.  Softening it so to be supple once again.   Did I mention yet how much this HURT?  About three months of work on each side, and my shoulders are both FINE.   You can still today visually see the thin line, but it doesn't 'feel' like a scar normally feels.

I explain all this so to try to compare this 'regeneration'' of scar tissue to the what?  (95% scar tissue of my kidneys.    It wouldn't surprise me that if somehow I cold pull my kidneys out and work them over much like a lump of bread dough, bending kneading, softening sufficiently that once reinstalled they may work far better again, and I wouldn't need Dialysis again.


Oh, IF Only!

Understand by this that I mean I SERIOUSLY doubt if ever mankind will find a method of repairing our currently damaged kidneys.   Regeneration is a very poor choice of word.   Re-growth of NEW cells is what is being done in the labs with very limited success, so far.   It is coming along.  I just hope that it will happen soon enough that many of us may still be here to take advantage of it.   I'm not holding my breath.

[Athena]

Below is an article that reiterates the topic of this post:

"Kidney disease doesn’t get the attention, funding or concern associated with cancers of the breast or prostate. But it actually kills more Americans — 90,000 a year — than both malignancies combined.

Even when it is not fatal, the cost of treating end-stage kidney disease through dialysis or a kidney transplant is astronomical, more than fivefold what Medicare pays annually for the average patient over age 65. The charges do not include the inestimable costs to quality of life among patients with advanced kidney disease.

Much is known about who faces the greatest risks of developing chronic kidney disease and how it can be prevented, detected in its early stages, and treated to slow or halt its "   

you can click on the link below to read the rest of the article


http://well.blogs.nytimes.com/2013/07/15/kidney-disease-an-underestimated-killer/?_r=0

BTW, diet and exercise and early screenings is suggested as key for treating most CHD conditions.

Interesting article HD2 and thanks for posting it. Yes, it is an obvious fact that CKD kills far more people than most other diseases do. These other diseases, like cancer, heart disease and so on, are far more well known and spoken about. In fact, I would go to on to say that CKD is probably as silent and invisible as what the lepers were in biblical times! I am not joking when I say this. We are out of sight out of mind kind of disease sufferers, locked away in these dreary dialysis centres much like the lepers were in their leper colonies. No one wants to know about us, nobody cares. Medical researchers are too busy trying to cure other more high profile 'sexier' diseases like HIV, breast and prostate cancers, heart disease. Yet, at any particular point in time, there are more people with some form or some stage of CKD than ever before. CKD is very common - that is what my Neph has been saying to me for years now.

Prevention is the answer but if prevention is very elusive when CKD establishes itself or was always going to happen, eg PKD, IgA, FGSG and long-term Diabetes. When prevention fails, we need a CURE or medical therapies that prevents kidneys from failing completely. Saving kidneys from complete failure is achievable! The evidence of this is found in all existing renal medical research that is being done to find a way to halt progression.

[Athena]

I think one of the reasons that CKD is an "orphan" in the field of research money allocation is the demographics and politics involved.  A very high % of CKD patients are people of color and people of very modest financial means.  So it's very easy for the powers that be to write them/us off.   Or even worse, to blame the victim.  If we were a "tonier" group overall, there might be more concern about us and more money flowing to research to help us.  In this very uncompassionate political climate--social darwinist at best--it probably won't be long before our treatment is no longer supported.  And we are just left to die in the dust.

Thanks K&S, I have always enjoyed reading your posts, I might just say.
Although kidney disease is more prevalent in indigenous, black and lower socioeconomic communities, the fact is, kidney disease is spread across all demographic groups. The same also applies with diabetes, the leading cause of this disease. Anyone can get diabetes.

I have just found a very impressive medical research charity in the US that focuses on eradicating kidney disease. It's founder is a KD sufferer as well as many others. It has also posted a list of famous people who have battled with the same disease. Incredibly Howard Hughes. Alfred Hitchcock, Laurence Olivier, Greta Garbo, Marlene Dietrich and so many other stars had died from kidney failure as did more recently Natalie Cole.

http://ukrocharity.org/about-ukro/who-we-are/

In Australia, a media mogul by the name of Kerry Packer died after a 5 year kidney transplant failed in 2005. Tragically, the country still basically think that he died of heart disease because of a few heart attacks he had that drew a lot of media attention. But he battled with CKD for more than 10 years before he died quietly from renal failure. That's the problem with kidney disease - no one seems to even want to dwell on it for too long or even name it. The public is so accustomed to hearing about other ailments, like heart attacks that CKD is kind of like a swept-under-the-carpet disease that isn't discussed even if you're a rich and famous person. Isn't this so tragic? And doubly hard for us to even raise some decent standard of public awareness of kidney disease?

[kickingandscreaming]

I think, in general, that the kidneys are the Rodney Dangerfield of organs.  They don't get no respect.  And Nephrologists are getting rarer and harder to recruit. And yet kidneys are enormously complex organs that perform a huge range of very subtle regulation.  They balance. They produce blood. They regulate fluids. They clear toxins.  They regulate electrolytes and minerals.  And on and on.  And yet no one ever thinks about them until they go kaput.  CKD is a "silent" disease... until it isn't.  I'll bet there are a ton of people walking around who have NO idea they have deteriorating kidneys.  Most people are never tested. I'm diabetic, so creatinine was part of my regular testing.  But without symptoms and without a related, causal condition there is no reason for anyone to know (until it's too late) that they are part of our unfortunate demographic.

[Athena]

I wonder whether many people have ever ventured into the world of kidney medical research to see what may be happening there? I ask this because my investigations have certainly uncovered many, many scientific researchers who work in the renal field all trying to find ways to halt or considerably slow the progression of CKD.

Has anyone else ventured into this area before? I'd be very interested to know this.

[kickingandscreaming]

No, I haven't, but I'd be very pleased to see what you have uncovered. Mostly, I have followed progress in implantable bio-mechanical kidney research.

[hatedialysis2]

I have come across many research to halt or slow down the progression of CKD.   I usually look for holistic approaches backed by clinical research.     Even though I am on dialysis, I still fight to keep from loosing my residual kidney function.   I have posted on this forum about research that has been done on kidney cell regeneration which disproved an old myth.  Think about it, every cell in the body regenerates into healthy functioning cells given the right conditions.   If you are looking for scientific research,  are you talking chemicals that mask symptoms or suppress certain body functions?   Cause thats what research and medications offered by big Pharma will offer.   

[MuddyGurl]

Charlie you crack me up!!

The shortcut to all I wrote below is: the modern diet is bad, people are media-overwhelmed so "get tested" scare announcements may never work, and each person must be responsible to do what they can and not insist 'someone' do something.  MANY someones and groups ARE doing plenty.

How many here know about the $100 million MDRD study for diet & CKD done in the 90s?

What makes people here think nothing is being actively done??  Untrue. The common person may not be aware, but there are many neph journals, plus meetings, etc going on.
 the Global  Initiative on Kidney Disease- study and education-  http://kdigo.org/home/     Much is being done to help PREVENT CKD, and therefor ESRD.
http://www.kdigo.org/clinical_practice_guidelines/pdf/KDIGO_BP_GL.pdf
Doctors and researchers in EVERY country are involved, there is a ton of info to download including a huge global report.

http://www.niddk.nih.gov/Pages/default.aspx   <US kidney disease site

http://www.thelancet.com/series/global-kidney-disease

READ PUBMED.gov… many many studies on VLprotein diets to delay ESRD are continuing now. Dr. Bill Mitch in TX studies diet and CKD.

READ Renal news articles- free online-http://www.renalandurologynews.com/chronic-kidney-disease-ckd/section/625/     there are hundreds of articles linked to studies
Like:   "A ketoanalogue-supplemented vegetarian very low-protein diet (KD) seems safe and may be able to slow chronic kidney disease progression, according to a study published online in the Journal of the American Society of Nephrology. I have links to hundreds of studies done.

If people are motivated why not contact these groups and volunteer your time???

CKD is a "silent" disease... until it isn't. I'll bet there are a ton of people walking around who have NO idea they have deteriorating kidneys." < yes the stats are 31 MILLION have CKD, most undiagnosed, in the USA alone.

MARCH is Kidney diease awareness month- free  testing in malls, eduction, literature, yet most people are not aware or barely interested!

1. People don't want to hear it- UNTIL they are told they are Stage 3-4
The biggest problem I see is  not a spokes-kidney, or funding, or a mean government that hates people…it is the people themselves who are both Unaware, and Unwilling to change their  diet enough to make a difference.
This is confirmed by my efforts to dicuss this in nutrition/diet websites..MOST people are bored to death, don't want to hear about this.
People who will spend big money on specially foods <Jenny Craig, etc>/gyms/books/ FitBits and "HCG drops" & 500 calorie diets to look "Hot", but don't care how all that affects their kidneys.

2. DOCTORS do not tell patients their GFR is dropping because they feel  a. there is no solution within patent medicine (i.e. food doesn't count)   b. patients won't follow strict diets anyway
I've read the stories of so many people furious and scared because their docs never mentioned CKD until it became an emergency.
Personally after losing one kidney to cancer NEITHER did my doctors say one word I was already at the bottom of Stage 3b!! I found out on my own, and argue with them yearly as they discount my nutritional efforts to stall loss. 

3. Americans don't  really connect diet to health-
The MDRD was  a $100 million muckup of a diet study for low protein, amino acids, in CKD.   MOST other countries used the results of this study, took it further and are treating their CKD patients with diet and ketos/aminos.. even CHINA with 20 MILLION  needing dialysis are testing 100K people with VLP and aminos..but NOT the USA…why not?

Our renal docs do not even attend  Intl.  Renal Nutrition conferences -- prolly cause they  still believe food won't help, and no money in it. If I went to Italy, Sweden or even Bulgaria I could be educated with a special diet and aminos supplement. ( It is available as OTC product in the US but  you're on your own to learn about it. Most will never find it.)

ANY spokes-kidney may die off, not a good image for success  -http://healthdetails.pw/teen-queen-sandra-dee-dies-at-63-after-a-long-battle-with-kidney-disease/

 

[Athena]

I think, in general, that the kidneys are the Rodney Dangerfield of organs.  They don't get no respect.  And Nephrologists are getting rarer and harder to recruit. And yet kidneys are enormously complex organs that perform a huge range of very subtle regulation.  They balance. They produce blood. They regulate fluids. They clear toxins.  They regulate electrolytes and minerals.  And on and on.  And yet no one ever thinks about them until they go kaput.  CKD is a "silent" disease... until it isn't.  I'll bet there are a ton of people walking around who have NO idea they have deteriorating kidneys.  Most people are never tested. I'm diabetic, so creatinine was part of my regular testing.  But without symptoms and without a related, causal condition there is no reason for anyone to know (until it's too late) that they are part of our unfortunate demographic.

Kicking&Screaming, you are one of the enlightened ones now! You have seen the light and so have I and everyone else who now battles with kidney disease. If anyone is going to try to make a difference it will be people like us, not any of the blissfully ignorant nor the silent renal medical researchers who have enough trouble attracting funds for their work. I think there is a huge role for kidney patients to say 'enough is enough' with the grim reality of medical neglect, ignorance & abuse. And it's always going to be too late for most people - kidney disease is often a slow silent killer. I don't really think most people can prevent it with the state of medical knowledge and treatment that exists right now. I am forever trying to beat this thing but it only continues to grow like a cancer.

[kickingandscreaming]

Here's what we're up against. http://www.renalweb.com/writings/StagnantDialysis.htm

[Athena]

Here's what we're up against. http://www.renalweb.com/writings/StagnantDialysis.htm

K&S, Wow! I should have known - it's the good ol' profit motive in health care that is the reason for the McDonald's service standard in dialysis treatment.

A revealing excerpt:

"As physicians and custodians of public trust, nephrologists cannot have it both ways.  If patients are to be treated morally and as equals, nephrologists must consider the impact of cheap, minimal dialysis treatments on their patient’s lives. They cannot enjoy profits from ownership shares in dialysis clinics while those same clinics provide care that they would never accept for their own family members".

This really makes me feel very sad right now. The more I delve into this whole industry, the more disturbing it becomes. I am right now stuck on the need for medical research that can prevent people from reaching dialysis, as you know, and THAT in itself is a disturbing landscape. The profit motive does not seem to "want" to support any patient-orientated research that might lead to ESRD being delayed or prevented - that message is very much loud and clear. What's disturbing is that kidney advocacy groups seem oblivious to the "higher objective" and only continue working to support the status quo. There is always a REASON for why things are the way they are.

A renal nurse looked at me recently & whispered: "There are some really sinister financial incentives that will keep the research you want out of reach".

The story never ends in this saga. 

[kickingandscreaming]

A renal nurse looked at me recently & whispered: "There are some really sinister financial incentives that will keep the research you want out of reach".

Wow! She actually spilled the beans?  As I said in the original post about this article. We are the golden geese.  No incentive to fix us.

[Charlie B53]

As with all crimes, just follow the money.  You will quickly find the people and the motivation, pure and simple greed for the money.