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Author Topic: When did the NKF become the National Transplant Foundation?  (Read 16448 times)
Meinuk
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« on: March 25, 2010, 10:26:02 PM »

Did I miss something?  When I was a child, it was the NKF print materials that educated me about what was going on with my disease.  They were my starting ground for making my life better. That was 35 years ago. 

Now I look at their mission statement and web page, and they have morphed into The National Transplant Foundation (my name for them). Where are their resources for the 86% of people in CKD5 who can't or won't have a transplant?  Why aren't they touting the benefits of Optimal Dialysis? What happened?

Their vision is still the same (from http://www.kidney.org/about/) Bolding my emphasis

Quote
Our Vision

To enhance the lives of everyone with, at risk of or affected by kidney disease.

But their mission tips their hand - somewhere along the line, a line was added, and they seem to have written off the majority of people in CKD5:

Quote
Our Mission

The National Kidney Foundation, a major voluntary nonprofit health organization, is dedicated to preventing kidney and urinary tract diseases, improving the health and well-being of individuals and families affected by kidney disease and increasing the availability of all organs for transplantation.

On a different thread, Okarol and I exchanged some posts about the NKF, and I just feel like they need to be reminded that CKD is not all about transplant.  Nowhere on their home page is there a link for living with CKD.  But there are five links about Transplant.  I am all for transplants, (I have one) BUT, I have lost too many people in my life to inadequate or no dialysis.  I have seen too many people suffer unnecessarily.  I would like to see the hero foundation of my childhood be a hero foundation for everyone, not just a fund-raising machine about organ donation.

Mine is a love/hate relationship with the NKF.  Last year, I raised money for them and anyone who knows me knows that I HATE asking anyone for money. But I felt/feel as if I owe them.  They were there for me as I watched my mother die with no dialysis.  They were there for me when I was in school and got pulled out by the nurse to go over my guidelines for playing in sports.  (I had to have a Doctor's note to play basketball). I gave the nurse a "living with kidney disease" pamphlet so she would get off my back.

I was even more horrified when I saw the NKF message boards:

NKF People Like Us Message Boards  http://www.kidney.org/patients/mboards.cfm

* Transplant athletics
    * Donor families
    * Living donors
    * Transplant recipients

    * Patient and Family Council
    * People with kidney disease and their families
* Waiting for an Organ Transplant

hmmmm maybe it is just bad web design.  Maybe it is just a bad dream.  All I know is that I will be re-visiting this thread and reevaluating how I feel about collecting money for this foundation.

We NEED a National Kidney Foundation that advocates for everyone with CKD. We NEED to change the current 3x a week incenter business model. We NEED a foundation to enhance our lives, with a broader focus.  As Karol said in the other thread - give us more than slogans.

In reading their Who We Are page (Bolding my emphasis): http://www.kidney.org/about/history.cfm

Quote
In order to more effectively serve all of our constituents, NKF is undergoing a major reorganization. In 2007, the transformation from an Affiliate-based structure to a centralized organization began. This shift enables the local volunteers and staff to focus on critical activities such as delivering programs and fund raising, while the National headquarters assumes most administrative responsibilities, including finance, information technology and human resources. NKF will emerge as a stronger, unified and more effective organization working towards fulfilling our mission.

The vision of the NKF is to enhance the lives of everyone with, at risk of or affected by kidney disease. The Foundation realizes there is still much more to do. Throughout our history, NKF placed patients first and still does.

Well, I am glad that they realize that there is more to do.  I think that we should start a list of what we need.  I think that one of the reasons there are so many groups out there, is that people want change, and then rather than staying in the system, they create a group of their own.  Well, I want to fix my first group.  I am sentimental like that.

Do any of you have any suggestions?

Of course, first on my list would be a total redesign of their web page, and changing that mission statement to include optimal dialysis, 'cause if they are gonna advocate so strongly for transplant, I'd like to know that they are helping the majority of people with CKD5 as well.



« Last Edit: March 25, 2010, 10:29:22 PM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
okarol
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« Reply #1 on: March 26, 2010, 12:35:27 AM »

I am like you, I think that in the past the NKF has played an important role in the lives of kidney patients. But I am also concerned about their lack of actual support for all patients, pre-dialysis, dialysis, and transplant. The kidney.org website says, "More than 26 million Americans live with kidney and urinary tract diseases and annually, more than 70,000 people die from these diseases." So, as Meinuk mentions, just focusing on the 90,000 that are currently waiting for transplants is not going to help all the rest.

It seems as though their priorities are fundraising (using patients and their families to raise money through kidney walks and transplant games) and prevention of kidney disease (important, yes, but let's not forget the hundreds of thousands of people already past the point of no return!) I know it takes money to run their programs, but are they actually helping any patients financially? And since the kidney walks are all run by volunteers, the NKF can collect quite a bit of money from these events, but it's coming from the patients!

And speaking of money, I hope someone can find out the truth about a rumor I have heard over the last 3 years. I was told that the NKF employs thousands of people in their 50 offices nationwide, but there is no directed effort or priority for hiring kidney patients, and they have NOT ONE patient employed at their NY office. Wouldn't it be wonderful if they were actually giving jobs to the people who need them the most, who could understand and support what is needed in the lives of kidney patients? If someone knows any differently I would love to hear it.

I searched around looking for more info about financial aid for kidney patients, and finally found this 2008 FReport from the NKF of Washington DC on NKF's website: The Patient Emergency Fund - In the past year, the NKF Patient Emergency Fund distributed nearly $25,000 to Washington, DC area dialysis and pre- and post-transplant patients. Patients needing assistance must request funds from their unit social worker. Once, the social worker approves the patient's request, it then goes to the Patient Emergency Fund coordinator for approval and a request is made for payment from NKF. For additional information about our programs and patient services, contact Cherie Carroll, Vice President of Medical Initatives at (202) 244-7900 ext. 20.  Has anyone heard of anyone getting help from this fund anywhere else in the US?

And on that same page is this: Medical Identification Jewelry - For over 20 years, the National Kidney Foundation has provided medical identification jewelry free of charge to patients in the Washington, DC metropolitan area. These individuals depend on the jewelry to speak for them in an emergency when they are unable to communicate their specific health needs. This is especially vital for the high number of dialysis patients who also suffer from diabetes. In the past year NKF distributed more than 1,000 bracelets and necklaces to dialysis and pre- and post-transplant patients in our community. Requests are processed through patients' social workers. For more information on obtaining a medical ID bracelet, please contact Jo Campanilla at (202) 244-7900 ext. 19. It sounds like a great idea, but I have never heard of any thing like it here in Los Angeles.

I'll have to make some phone calls to see if I can find out more.

The pie chart below is also from the DC based NKF, but gives an idea of were the money goes. That's a big chunk for educating professionals!

Thanks for bringing up this topic Meinuk. I am interested to read your comments and I hope to learn more as time goes by.

« Last Edit: March 26, 2010, 12:55:48 AM by okarol » Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
MooseMom
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« Reply #2 on: March 26, 2010, 02:16:47 AM »

I do not know much about the NKF, but I can understand your concern about the seemingly overemphasis on transplantation.  Now, I'm just thinking off the top of my head, but I can't help but wonder if the NKF is trying to educate larger populations about the benefits of transplants.  I read a study recently that showed that many poorer and, well, blacker dialysis communities simply never received from their doctors or their clinic much info about transplantation.  Many strides have been made in transplantation technologies that should make this a more viable treatment option for more people; maybe the NFK is trying to overcome a dearth of information.  The transplant center I had my evaluation with told me that they serve mostly patients who never got much information or good pre-dialysis care; they were from poorer minority communities nearby.  Again, I don't really know for sure, but that's my first reaction to your posts.

But yes, advocating for optimal dialysis for those patients who do not choose transplantation is vitally important.  Surely advocacy for one doesn't need to supercede advocacy for the other.
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Meinuk
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« Reply #3 on: March 26, 2010, 05:15:44 AM »

Thanks for your posts MooseMom & OKarol, you raise some good points that need to be addressed.

For some reason, I just can't seem to post this morning.  I just lost two replies, so I'll keep this short.

Here is the FY 2007 IRS 990 report for the NKF's NYC chapter (Guidestar lists 95 separate NKF foundations - I guess consolidation is slow)

and FY 2009.  http://www.kidney.org/about/resourcecentral/pdf/FY_09_IRSform990.pdf

This is just a start.
« Last Edit: March 26, 2010, 08:44:52 AM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #4 on: March 27, 2010, 12:18:24 AM »

I understand what you are talking about Mainuk. It is the same for NKF of Illinois promoting more about transplant and events regarding transplants, which they have one coming up in April.
 
The only thing I can suggest is to start writing to your local KF or call and bring up the same points. The more people that speak up the better to get the point accross in anon attacking matter.
 
When I first went on dialysis in 1999, the NKF put on events regarding more about dialysis, nutrition do's and don'ts, tpes of dialysis, products, and then a little about transplant. In 2001 it was switched to all about transplantation.
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Diabetes -  age 7

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Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
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« Reply #5 on: March 27, 2010, 09:21:55 AM »

http://www.billpeckham.com/from_the_sharp_end_of_the/2009/03/nkf-has-a-transplant-focus-to-the-exclusion-of-dialysis.html

At least this year they had a 10' x 10' booth at the Annual Dialysis Conference and they had an "outspoken dialysis patient" keynote their Portland Patient meeting earlier this month.

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Meinuk
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« Reply #6 on: March 27, 2010, 09:31:07 AM »


an "outspoken dialysis patient" keynote their Portland Patient meeting earlier this month.
Outspoken, really???  :) 

I do believe in the NKF.  I just think that they got a little off track. It is time to remind them of that.

This is what I wrote in the other thread (I'm not posting the link - because the initial topic was not the NKF)
Quote
Karol, like I said, I have a love/hate relationship with the NKF.  They do have a lot going on, but they seem to only promote transplant and preventative.  Last year, I decided that they were worth trying to rehabilitate.

Now, with the NKF celebrating their 60th year, if I were to use a CKD metaphor, they are in CKD3 and operating at 30-59%, I think they can be saved, and we can stave off total failure with some aggressive treatment.

They are woefully lacking when it comes to Dialysis:  http://www.kidney.org/atoz/atozTopic_Dialysis.cfm

But their KDOQI is a great resource.  http://www.kidney.org/professionals/KDOQI/

I am very impressed with their past efforts with preventative outreach as well.

They are off track and way too slick and transplant centric, which has put them out of touch with the CKD population.

I have never used their financial assistance program (nor do I know anyone who has) but I thought is was still funded and dispensing relief.  Their application is still on-line.  http://www.kidney.org/site/308/pdf/PatientAssistancePolicies%20rev1_10.pdf [Karol pointed out that this was regional only]

I see what they are trying to do with the END THE WAIT program, I just wish they would do more for the general CKD population.  I decided to stay close and try to remind them of that at every chance I get.  I just can't write them off yet.  I am used to being abandoned, let down and rejected in my whole CKD battle, I want to work to keep one of the ones that were there for me around.  (I feel the same way about IHD)

NKF Fact # 237: To help improve the quality of care for people with kidney disease, the National Kidney Foundation (NKF) created a guideline to help doctors identify each level of kidney disease. The NKF divided kidney disease into five stages. When the doctor knows what stage of kidney disease a person has they can provide the best care, as each stage calls for different tests and treatments. (So, thanks to the NKF, I don't have ESRD, I am in CKD5 - it's not the end for me.)

Just thinking about that makes me realize that I am fighting to take the END out of "end stage renal disease" - I can thank the NKF for that too. (well, I'll give them partial credit for that - there may have been a Rockstar involved too...)
As for their message boards, it is so easy now to just set one up, everyone has one.  It scatters the population.  I see a redundant message board spamming here all the time.  It dilutes the population and dilutes the message, but what are you gonna do, everyone is doing it.  That is what I like about IHD, it has support for everyone in every aspect of CKD, and renal replacement therapy (including end of life).

There is no "Links page" on the NKF website.  I have to wonder about that. (If I missed it, please correct me).  I don't think that I am asking for anything that is outside of their Vision Statement:  To enhance the lives of everyone with, at risk of or affected by kidney disease.  I guess the key word in that statement is enhance. Hmmm they don't write support, they don't write educate, they chose:

en·hance    (ěn-hāns')   
tr.v.   en·hanced, en·hanc·ing, en·hanc·es

   1.      To make greater, as in value, beauty, or effectiveness; augment.
   2.      To provide with improved, advanced, or sophisticated features: computer software enhanced with cutting-edge functionalities.

I can work with enhance - as soon as they start promoting Optimal Dialysis with the same exposure that they give Transplant and Preventative Options.

So far we have: 

                             Redesign the website and emphasize "Living with CKD"
                             Clarify what financial support goes directly to patients
                             Reassess the 2007 consolidation - how'd that go?  What are the plans for the future?
                             Are any NKF employees affected with CKD?
                             Promote Optimal Dialysis
« Last Edit: March 27, 2010, 10:06:08 AM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #7 on: March 27, 2010, 11:32:06 AM »

Meinuk, do you get their newsletter that they put out every so often from your local NKF?
Here they point out which employees have CKD and if a new hire or volunteer at their main office has CKD, they point that out. However I'm thinking most of the higher ups do not have issues with their kidneys.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
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« Reply #8 on: March 27, 2010, 09:53:25 PM »

It is not just the NKF, it is the complete second class nature that optimal dialysis has even though it is the best way to assure that those that do get a cadaveric transplant after being on the list for years are in the best shape possible.  I believe that they simply represent the bias that is present in the media and in the CMS approach to renal replacement issues.  Some how, the small fraction that get transplants completely supplant that masses that could have better dialysis but never receive the same coverage even though nocturnal dialysis and cadaveric transplant have similar outcomes.  Perhaps the issue of renal transplant as the cheaper option is what the skewed attention to dialysis is all about.  What does this say about the independence of the NKF and other patient advocated groups which likewise have a skewed approach to renal replacement issues?
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All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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« Reply #9 on: March 27, 2010, 10:46:02 PM »

Perhaps the issue of renal transplant as the cheaper option is what the skewed attention to dialysis is all about. 

That is a very good point...very possible.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Meinuk
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« Reply #10 on: March 27, 2010, 10:58:50 PM »

The vision of the NKF (the granddaddy of all CKD Advocacy groups) is:

To enhance the lives of everyone with, at risk of or affected by kidney disease.

Economics should NOT bear into it.  The vision is not: To enhance your life if you qualify for a transplant, if not, you're outta luck.

Yes, the whole world needs a refocus, but for now, I'll take on the NKF in this thread and the rest of the world everywhere else.

Chris, your point is great.  I am thinking that the consolidation of 2007 wasn't much of a consolidation.  The marketing ideas and materials come from the head office.  I am sure that the independents have their own ideas and integrate them on a state and chapter level, but we need to start at the top and make the Board of Directors understand that they have stopped serving the majority, and they need to refocus.  They can counter that those in CKD 2-4 are the majority, and I'll point out that transplant is only 14% of CKD5 yet they get almost as much support as preventative.

Generally, in my admittedly biased CKD world view, where the NKF goes, others will follow.  So I am starting with them. I raised money for them.  I at least deserve some answers.  Once I form a cogent list, and do all my due diligence, then I'll end up on their doorstep with questions.  This thread is helping me to understand the voice of those with CKD5.  And I'll update as I progress, or not, whatever the case may be.
« Last Edit: March 27, 2010, 11:06:33 PM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #11 on: March 27, 2010, 11:48:14 PM »

It seems like most people assume that a patient would choose a transplant over dialysis, given the choice. This was something I learned about on IHD. Some patients cannot get listed, of course, but I never knew that there were patients who actually chose to treat their CKD with dialysis and not pursue a transplant. Epoman really opened my eyes to that idea. I now know there are patients who reject the idea of a transplant for a number of reasons. I wonder if the NKF is not perhaps as naive as I once was.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #12 on: March 28, 2010, 09:00:53 AM »

Karol, there are so many aspects to transplant that people don't know.  I started my career at the Massachusetts General Hospital, where I was lucky enough to work under leaders in the transplant field. Thursday mornings at 7:30 were our transplant rounds.  Even though I was just an assistant that brought the doughnuts, MGH is a teaching hospital, and these were my patients too.  I sat between surgeons, nephrologitsts, social workers and nurses, and I listened. I was in CKD3 then, and I never imagined that a transplant was in my future.  This was in the days when OKT-3 was in study, and CMV was wiping people out.  Transplant has made leaps and bounds since the 80's.  Dialysis not so much.

I think that in the excitement of the breakthroughs and dramatic changes in transplantation, the real message got buried. Transplants can be dramatic in both a good way, and in a bad way.  Transplant is really dramatic when someone goes from being underdialyzed - as most do - to being transplanted.  I'm told it is like night and day.  My transition was not so dramatic.  My skin felt cleaner, and I had my nights and weekends free. HDHD had prepared my body for the transition.

The messages that I am seeing in the media and at the NKF is that  if you have CKD, just get a transplant, it'll fix you.  But, that just isn't the whole truth. It is not that simple, and that is where the naivete comes from. There are so many hurdles when it comes to transplant and the list. 

PRA is the biggest.  People sit on the list waiting for a match, because their PRA's are so high, the odds are against them. They are listed, but the chances are, they'll need dialysis before a match is found. If you've had multiple pregnancies or multiple transplants or blood transfusions, your PRA will be high. There are very exciting studies being done to combat this, and IVIG therapy has come a long way, but the wait is still long.

Money is another barrier.  How to pay for immunosuppresives for the life of the graft.  People have enough to worry about.  1K a month (with generics) is a huge lifetime burden. If you feel terrible on 3x a week dialysis, the thought of going back to work and getting health insurance is very abstract. It is hard to imagine being healthy again when you have reached the depths of being under dialyized.

Overall health. If you smoke, quit or say good bye to UNOS.  If your BMI is high, you are inactive until you lose the weight.  If you have co-morbidities - like any heart disease, you'll be scrutinized. The criteria is strict.  Even dental issues have to be addressed before one can be listed, and Medicare does not cover dental.  So if you are Medicare primary on dialysis, that root canal is out of pocket.

There is more, we hear the stories here all the time. 

Learning is the greatest thing.  Stumbling across IHD changed my life.  I already knew about NxStage, but had been denied.  (I even tried buying a machine under the table). My lobbying efforts only paid off when I could prove that others were doing it alone (well, an other - some guy in Seattle that I read about here on IHD - for some reason, I just blank on his name  ;)).  I want to get people out of 3x a week dialysis units.  I want them on nocturnal, I want them on PD, I want them at home if at all possible, and I want them healthier than they are right now.  My CKD path has been relatively easy - thanks to a lot of education, a lot of work and a lot of dumb luck.  I want everyone to have the same opportunity that I had, and I figure that the NKF is a good place to start.

Naive we can fix.
« Last Edit: March 28, 2010, 09:34:22 AM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #13 on: April 15, 2010, 06:22:58 PM »

Well, I wrote to them.  Let's see if I get an answer.  If no, then it'll be a phone call next.

Here is the text of my e-mail:

Hello,

My name is Anna Bennett.  I am 43 years old, with second generation PKD.  I was diagnosed at birth, and had the best possible medical care and education, thanks largely to you, the NKF.  Yours were my learning materials, and I am deeply in debt for the comfort that I was given as I watched my mother die from ESRD in 1979, just days after my 13th birthday.

Cut to decades later.  My kidneys failed, and I started dialysis here in NYC at DaVita Lifecare.  In-center dialysis was one of the worst experiences of my life.  The state of NY finally closed the unit in August 2008.  I was already on home hemodialysis and I was thriving.  A few months later after a 3.5 year wait, I received a UNOS transplant, and still I am thriving.

Be warned, my questions are loaded.

I see the NKF now as the National Transplant Foundation.  You have so many resources for transplant, and you do so much outreach, but the people with CKD5 are suffering on dialysis, and very few of that population are eligible for transplant.  Sadly there are those out there who demonize dialysis so skillfully, to promote transplant, that they even further demoralize their peers without even realizing the damage they are doing.  Have you just written those ineligible or unwilling to have a transplant off?  The NKF advocates transplant "End the Wait", so those who are ineligible (or worse, eligible with a high PRA, and impossible wait time) there not waiting for anything (well, waiting to die if you listed to Sally Satel)?  They are still alive, they are not waiting, but there is so much need.  With modern technology, they could easily be for decades, but only if they know their options, Home dialysis, in center nocturnal, diet modification, buttonholes for access, in center self care, there is so much, but on your home page, I see TRANSPLANTATION as a menu navigation option what about DIALYSIS?  Words matter, education can diffuse fear, and even better change lives. It is out there, I lived it.

The NKF seems to dangle transplant like the golden apple.  How would it make a person feel who is facing dialysis, has co-morbidities or worse, a soul crushing wait - freeing up organs is never going to change a high PRA.  IVIG may help, but chances are the wait will be long never the less.  Could you please show some thought for the 86% of the population who are suffering in-center on dialysis (CKD5 not listed and inactive per UNOS 2006 data)?  Could you have programming for family members about supporting someone who is on dialysis?  Could you promote home dialysis and the success stories?  Home dialysis is easier now, and so accessible, and so much better for you.  I was walking around mountains when I was on NxStage.  There is a man sailing the Atlantic on PD. These therapies save lives too. They need to be on the NKF Home Page.  Shout it from the roof tops. If we get more people taking control of their own care, they will fell better and leave the units for those who need special medical attention.

Transplant is great, I have one, but I am one of the lucky ones.  I watched my mother die with no dialysis.  I watched patients suffer in center at DaVita Lifecare due to poor staffing, poor oversight and lack of care.  I am worried that you have forgotten a huge portion of the CKD population.  Can you please advocate for them too? People need to be empowered.  The NKF empowered me as a child.  What can we do to fix this now?

Thank you,

Anna Bennett
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Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #14 on: April 15, 2010, 06:47:33 PM »

Terrific letter Anna.  I look forward to hearing about their response and, failing that, about your next steps. 
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New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
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« Reply #15 on: April 15, 2010, 06:59:32 PM »

 :clap; Thanks for speaking up for all kidney patients Anna!
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Jenna is our daughter, bad bladder damaged her kidneys.
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She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
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« Reply #16 on: April 15, 2010, 08:30:05 PM »

Not to hijack the thread but that guy is now crossing the Pacific while using PD: Jean Louis has just left the Galapagos and is now on the solo leg of his sail - he's making his way to Tahiti!

That said, your point stands. The NKF needs to reweight their message.

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Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
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« Reply #17 on: April 15, 2010, 10:49:30 PM »

I want a transplant, and I want to be educated about that topic via the NKF.  However, my elderly mother is also on dialysis and is not a candidate for a transplant, and she is deserving of good health from good dialysis.  It does not have to be an either/or proposition; NFK certainly should be able to advocate for more transplantation AND better dialysis for those not willing/able to be listed.  I don't see why this should be a problem.  Please do let us know if you receive a reply.
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« Reply #18 on: April 16, 2010, 06:17:03 AM »

Thanks for the update Bill.

The man Bill referenced is pretty amazing.  He started his blog when he was crossing the Atlantic, I just don't have the time to follow all his travels.  As of his last post, he just left the Galapagos and is headed West. 

Sigh, I am sitting in NYC typing on a computer.  I guess the grass always looks greener from the other side.

http://www.jeanlouisclemendot.fr/historique.php

Moosemom, I actually have a pretty strong history of writing about these therapies being complimentary and not competing.  My case is a good example of the transition from high dose hemodialysis to transplant.  When I chose to become an advocate, I decided that I would focus on optimal dialysis.  Because of this, I may seem biased, but that is far from accurate.
« Last Edit: April 16, 2010, 06:59:10 AM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #19 on: April 16, 2010, 08:01:41 AM »

Oh no, Meinuk, I don't think you're biased at all!  Exactly the opposite!  I think you are advocating for those who, in this age of such emphasis on tranplantation, are in danger of being left behind on dialysis that is merely "adequate".  It is very clear that you are well practiced in this, and I applaud you loudly!! :clap;  Thank you for all you do.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #20 on: April 16, 2010, 08:16:27 PM »

Good letter Meinuk.
I couldn't read it when you posted it yesterday because it was long and my attention span was not there due to long day at docs.
 
I hope you get a reply soon and possily called in to help out.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
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« Reply #21 on: May 22, 2010, 11:11:22 AM »

Ok, now this has just become an exercise in "I wonder if anyone will listen to me"....

I started with the original e-mail to the NKF General News e-mail address on 4/15 (as we are told to do in their e-mails) one month later.... No Response

Today, I sent it to their General Contact interface on their website (same e-mail). Let's give it a month and see what happens....

I am not pressing this and going to contacts that I have here in NYC, mostly because I am lazy and have an over programmed Summer, but also, because I am curious to see just how responsive they are to people with CKD who don't have a direct line.

Text of my e-mail:
Quote

Hello,

My name is Anna Bennett.  I am 43 years old, with second generation PKD.  I was diagnosed at birth, and had the best possible medical care and education, thanks largely to you, the NKF.  Yours were my learning materials, and I am deeply in debt for the comfort that I was given as I watched my mother die from ESRD in 1979, just days after my 13th birthday.

Cut to decades later.  My kidneys failed, and I started dialysis here in NYC at DaVita Lifecare.  In-center dialysis was one of the worst experiences of my life.  The state of NY finally closed the unit in August 2008.  I was already on home hemodialysis and I was thriving.  A few months later after a 3.5 year wait, I received a UNOS transplant, and still I am thriving.

Be warned, my questions are loaded.

I see the NKF now as the National Transplant Foundation.  You have so many resources for transplant, and you do so much outreach, but the people with CKD5 are suffering on dialysis, and very few of that population are eligible for transplant.  Sadly there are those out there who demonize dialysis so skillfully, to promote transplant, that they even further demoralize their peers without even realizing the damage they are doing.  Have you just written those ineligible or unwilling to have a transplant off?  The NKF advocates transplant "End the Wait", so those who are ineligible (or worse, eligible with a high PRA, and impossible wait time) there not waiting for anything (well, waiting to die if you listed to Sally Satel)?  They are still alive, they are not waiting, but there is so much need.  With modern technology, they could easily be for decades, but only if they know their options, Home dialysis, in center nocturnal, diet modification, buttonholes for access, in center self care, there is so much, but on your home page, I see TRANSPLANTATION as a menu navigation option what about DIALYSIS?  Words matter, education can diffuse fear, and even better change lives. It is out there, I lived it.

The NKF seems to dangle transplant like the golden apple.  How would it make a person feel who is facing dialysis, has co-morbidities or worse, a soul crushing wait - freeing up organs is never going to change a high PRA.  IVIG may help, but chances are the wait will be long never the less.  Could you please show some thought for the 86% of the population who are suffering in-center on dialysis (CKD5 not listed and inactive per UNOS 2006 data)?  Could you have programming for family members about supporting someone who is on dialysis?  Could you promote home dialysis and the success stories?  Home dialysis is easier now, and so accessible, and so much better for you.  I was walking around mountains when I was on NxStage.  There is a man sailing the Atlantic on PD. These therapies save lives too. They need to be on the NKF Home Page.  Shout it from the roof tops. If we get more people taking control of their own care, they will fell better and leave the units for those who need special medical attention.

Transplant is great, I have one, but I am one of the lucky ones.  I watched my mother die with no dialysis.  I watched patients suffer in center at DaVita Lifecare due to poor staffing, poor oversight and lack of care.  I am worried that you have forgotten a huge portion of the CKD population.  Can you please advocate for them too? People need to be empowered.  The NKF empowered me as a child.  What can we do to fix this now?

Thank you,

Anna Bennett
« Last Edit: May 22, 2010, 11:16:37 AM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #22 on: May 22, 2010, 05:17:29 PM »

Great email Meinuk, thank you for not forgetting about the rest of us still on dialysis.  It seems many with kidney transplants have short memories and disappear once they get their kidney.  Let us know if you get any response, but I won't hold my breath waiting for it.
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Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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« Reply #23 on: June 01, 2010, 06:21:29 PM »

Whoo hoo!  I got a reply.  Sadly, I just wasn't in the best of moods, and I responded (it just wasn't what I wanted to hear - call me demanding....)  Both are below.  (contact info redacted)

Quote
Dear Ms. Bennett:
Thank you so much for taking the time to providing your insights and sharing your experience with CKD and transplantation to the National Kidney Foundation (NKF).

We agree wholeheartedly about the absolute necessity of educating and empowering people in all stages of chronic kidney disease, and remain committed to helping people understand and learn about all treatment options available to them. In fact, the NKF's patient advocacy movement "People Like Us" www.nkfpeoplelikeus.org was instrumental ensuring the passage of a 2008 law by the U.S. Congress which mandates educational classes in all treatment modalities for people with chronic kidney disease.

The NKF's constituent group the Patient and Family Council (PFC), www.kidney.org/patients/pfc/index.cfm, was established by and for people like you with chronic kidney disease (CKD) and their families. It provides an avenue for patients like you to express concerns and identify problems so that the NKF can help address those concerns and problems in an effective way. The Council acts as a liaison between the NKF and the kidney community, and as a voice within the NKF on patient issues.

We recognize that not everyone is a transplant candidate, and we know that there are hundreds of thousands of people who lead productive lives while on dialysis. For these reasons, we continue to develop educational materials and resources to support people who receive dialysis treatments. Two of these publications include the NKF booklets: "Getting Ready for a 'New Normal,'" which was written by people like you to help others with kidney failure cope with their emotions about starting dialysis. Coping with loss of life the way it used to be, dialysis choices, regaining physical health, getting to know the dialysis care team, and employment, travel and activities of daily living are among the topics covered in this booklet; and "A 'New Normal': Life on Dialysis - The First 90 Days," which provides valuable information from dialysis patients to help others adjust to the physical and emotional issues associated with life on dialysis.

Further, NKF's "Coffee House Conversations" - our telephone education and support program - provides patients with the opportunity to hear from experts, learn from each other and discuss various issues associated with dialysis. The next series of calls will focus on the connection between diabetes and chronic kidney disease. For more information, and to listen to past "Coffee House Conversations," please visit: www.kidney.org/coffeehouse/

The above mentioned initiatives are just a few ways in which the NKF continues to empower, educate and encourage people on dialysis and others among the chronic kidney disease spectrum. To learn more about our programs for people on dialysis, please visit: www.kidney.org/patients/dialysis.cfm

Thank you, again, for contacting us and sharing your candid thoughts. We do hope that we can count on you to help us raise awareness and support people on dialysis and others who are affected by chronic kidney disease. In fact, I encourage you to consider joining the NKF's "People Like Us" advocacy movement - please visit www.nkfpeoplelikeus.org . If you have any questions or need additional information, please feel free to contact me at:

Sincerely,
Tracy Fortson


[NKF Managing Director of Constituent Services]


My Reply (like I said, I am always asking for more...)

Quote
Dear Ms. Fortson,

Thank you or your e-mail.  I have been eagerly awaitnig a response since April when I first contacted the NKF (originally by following the instructions in the newsletter - no response, so I used the website interface).

I thank you for pointing out the programs that you do have.  I also see this as a marketing issue.  Transplant is the main feature on the NKF home page. Dialysis is buried on a drop down menu. Why?  Why do people with a CKD diagnosis have to search for information on dialysis, when they have many instances of transplant staring them in the face? Is their any way that the website could be more balanced, and easier to navigate for treatment options?

I applaud the work that the NKF has accomplished over the years, I just feel that there has been an advocacy shift, and that shift is alienating the majority of people with CKD.

Thank you for the invitation to join your patient group.  I am already fairly active on the CKD advocacy front, and I feel that the quickest way to stall an issue is to form a committee about it.  Which is why, I am reaching out to you, the employees and management of the NKF to appeal for a change. Or at least to make you aware that this is an issue, and if the current population trends come to fruition, this is a growing issue. Is the NKF so busy that a person has to join a committee in order for their voice to be heard?  The NKF needs a liaison entity? Is this an indication that direct correspondence is not welcome?

Are you able to change the home page of the NKF?  To spread the word about dialysis options as well as you spread the word about transplant?

Are there people with CKD5 working for the NKF? (not in a volunteer capacity)

Is there anyone currently on dialysis on the Board of Directors?

How are your pamphlets distributed?  I saw none in my unit when I dialyized at DaVita Lifecare in NYC. Are there links to the NKF booklets so that web savvy patients and family members can have access to them?

While I am applauding your efforts, I am still asking for more. Last year, I fund raised for the NKF without a second thought.  Now, I am sharing my second thoughts.

I look forward to our correspondence.

Best Wishes,

Anna Bennett

« Last Edit: June 01, 2010, 06:47:16 PM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #24 on: June 01, 2010, 09:09:55 PM »

Wow, you really have to dig through the NKF website to find those booklets. I searched directly for the one entitled Getting Ready for a "New Normal" and found it here http://www.kidney.org/professionals/KLS/anewnormal.cfm
Why would they only put them in the professional section?? Once again, dialysis patients are deemed incapable of gathering info.
When I tried to backtrack and figure out where to access this directly, I see that most information from the Kidney Learning Solutions (KLS) is directed at medical professionals, and not offered to patients.

Home > Professionals > Kidney Learning Solutions

Getting Ready for a "New Normal"
A “New Normal”: Life on Dialysis - The First 90 Days Stage 5
You can receive first order complimentary (up to 5 copies), additional copies are $3.00 each.

I finally found the booklets in Professional Education: Dialysis - http://www.kidney.org/members/source/catalog/index.cfm?section=unknown&task=2&CATEGORY=P&SUBCATEGORY=Dialysis

"Your Treatment, Your Choice" is available free to Physicians, Advanced Practice Nurses, Physician Assistants and Clinical Nurse Specialists. http://www.kidney.org/professionals/KLS/YTYC.cfm

 :oops; If you're not a pro, do not order.






Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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