Dialysis from the sharp end of the needle

Notes From Transplantation in the USA Part Three: Organ Trafficking Here and NOW

By Anna Bennett

This is Part Three  (parts one & two) of a three post series on Transplantation in the USA a program given in NYC on April 19th 2010 by the Kidney and Urology Foundation of America.

There is a HUGE disservice being done by the advocacy world to those in CKD5.  Why is organ donation always conflated with an Organ Market?  Paying an altruistic donor's medical bills is expected, it should be a given. Ensuring that a donor is not discriminated in future medical care, that too should be a given.  Missed work/recovery - well, that is a debate. I am ok with it, as long as it does not enrich the donor. The disservice is done by promoting travesties such as the Iranian Paid Donor System as optimal (as Dr. Tabarrock did).  It is that kind of example that just detracts from what can be done to help.  Citing a country with KNOWN human rights abuse removes all credibility and made Dr. Tabarrock an easy target for the final speaker of the evening, Dr. Nancy Scheper-Hughes, Ph.D., Chancellor’s Professor in Medical Anthropology, Head, Doctoral Program in Medical Anthropology, Critical Studies in Medicine, Science and the Body, University of California at Berkeley; Director, Organs Watch.

My first reaction, WOW! It was fortuitous that the she spoke right after Dr. Tabarrock, she easily refuted his citation of Iran being a good example of an Organ Market. She has actually had graduate students working in Iran, unbiased people who have seen the atrocities and abuse first hand. This woman brought it all into perspective for me. Her research is on Organ Trafficking. 

Dr. Scheper-Hughes is well versed in CKD and the unique entitlement that guarantees that we in the United States with CKD5 receive treatment. Entitlement is the key word here. If we paid into the system or are a child, we are guaranteed renal replacement in the form of dialysis or transplant and the government will pay for it. The Medicare ESRD Entitlement is a unique program, in this regard, Americans with CKD5 are very, very lucky.

Dr. Scheper-Hughes talked a bit about the history of the Medicare entitlement and the original Seattle "Life or Death" Committees. Dr. Scheper-Hughes spoke for a long time, and many in the audience were uncomfortable. It is tough to sit in the pristine Paley Center Screening Room, just off Fifth Ave in NYC, and be faced with the realities of Organ Trafficking. Those reception canapes paid for by big pharma don't sit too well when Dr. Scheper-Hughes points out that trafficking exists here in NYC - all over the USA actually - she gave us places and names, and slides of the traffickers.

Currently, one Trafficking Ring is flying in Moldovian Peasants to the USA to be paid donors.  The National Organ Transplant Act (NOTA) is the law that covers against paid donation has been on the books since 1984 (and then amended in 2008).  As of today there have been no prosecutions citing the act.  District attorneys are not enforcing it. Dr. Scheper-Hughes has been working with the FBI and various embassies, trying to stop this exploitative practice, and so far, nothing has come of it.  When she spoke to the Moldavian Embassy, their reply was (I am paraphrasing) "So, that's why so many were applying for visas".

I hope that we'll be hearing more from Dr. Scheper-Hughes, we need to be reminded that desperation can lead to exploitation.  There are better answers out there than buying a kidney on the organ black market.  Nephronline noted in their quote of the day (which, if memory serves, was said during the Q&A - when Dr. Scheper-Hughes was trying to see a solution to the desperation):

"Due to the huge shortage in available organs, a sense of desperation has set in, driving the current practice of organ trafficking. There are penalties for buying, selling and brokering the sale of organs in this country, but still it goes on, often with an attitude of 'don't ask, don't tell.' I believe that if the laws are not going to be followed, then the laws should change. First, though, a controlled study must take place, in an ethical manner, with a sample of volunteer organ donors being compensated appropriately."

—Nancy Scheper-Hughes, director of Organs Watch and an expert on organ smuggling at the Kidney & Urology Foundation of America transplant conference.

On a personal note: I want to thank Karol Franks (OKarol) over at IHD for posting about this program (that is how I found out about it). Karol is an AMAZING woman, and her dedication to those with CKD is a shining example for all of us. I want to thank KUFA (the Kidney and Urology Foundation of America) for putting on the program. I wish they did more for those 80% of people with CKD5 who are on dialysis with no transplant in their future. But I see that there is high drama in transplant. I'll admit, it is shocking to see the scars of the Brazilian mental patients who were kidney donors. What I'd like to see is some of that passion go into promoting HDHD. I'd like to see more examples like Bill, Peter and Harvey et al, showing that life does not stop with dialysis.

Notes From Transplantation in the USA: Part Two Using Incentives in Organ Donation

By Anna Bennett

This is Part Two (part one) of a three post series on Transplantation in the USA a program given in NYC on April 19th 2010 by the Kidney and Urology Foundation of America.

Paying for organs has been discussed before on DSEN. I have firmly taken a stance that opposes creating an organ market here in the United States. That being said, the discussion is on the table and both sides have the mic.

The second speaker of the evening was Alex Tabarrock, Ph.D.: Bartley J. Madden Chair in Economics at the Mercatus Center and Associate Professor of Economics , George Mason University, Fairfax VA; Director of Research, The Independent Institute, Oakland, CA.

Dr. Tabarrock presented his studies showing that economic incentive is the way to cure the organ shortage. He even quoted Adam Smith (pretty safe bet for an economist). It was when Dr. Tabarrock started extolling the virtues of the Iranian system that he raised my ire. Seriously? He was using Iran as an example of a robust and functional organ market? He did. Really.

My favorite moment though was when he said that other medical/organ donations were already being compensated. His example: When you donate your body to science, they give you a free cremation after they are done. I almost laughed out loud on that one. What are these centers going to do? Ship the body parts back home? Of course the donated body would be cremated (hint Dr. Tabarrock, unclaimed bodies in NYC are cremated for free as well).

Obviously, I do not agree with Dr. Tabarock or the whole school of thought "Why can't I buy a kidney if I can afford it? It's the American way." There have been posts here on DSEN and all over the internet about the subject, it is polarizing and controversial. I cannot write unbiasedly about it. There seems to be two schools of thought, one of individual rights (Dr. Tabarrock's camp) and Society (my position). Dr. Tabarrock cited Israel and their compensation for deceased donors. I would agree that is a program worth watching closely. Deceased donors cannot be coerced or manipulated, they are not desperate.  He also cited the State of Pennsylvania creating a trust to compensate deceased donor families. He stated that the fund was established, but never used for fear of public backlash.

This is such a polarizing subject, and debate can easily devolve, and has.  My suggestion is that we watch and wait, and while we are doing that, let's fix the holes in the current system.  Because, before we create a whole new administrative and ethical nightmare with any form of compensation for donors (other than medical expenses) we have a lot of work to do. There is so much room for improvement in our system right now.  It is my opinion that Dr. Tabarrock's time, education and energy could be of use to the CKD community in a much more advantageous and practical way, rather than pick a morally gray area and try to grandstand upon it.

Notes From Transplantation in the USA: Part One Successes and Challenges

By Anna Bennett

The Kidney and Urology Foundation of America hosted a program last Monday: Transplantation in the USA: The Shortage of Available Organs and Public Health Policy:

There are over 100,000 people on the national transplant wait list, and most wait for kidneys. The organ shortage crisis and recent events surrounding the underground market for organs begs us to explore current practices in organ allocation, incentives for organ donation, and how health care policies evolve.

See NephrOnline coverage here.

It was my intention to attend this program and write a simple recap for DSEN. As I sat in the audience at the Paley Center for Media, all hope for an unbiased recap was lost. Instead, what I found was a diverse group of presenters who challenged my thoughts and opinions, and in two cases, reassured me that there are amazing professionals working in the field today. I am writing these as a series of posts.  This is the first: Successes and Challenges in Transplantation 2010.

After a warm welcome by Jonathan A. Winston, M.D., Program Chair and Moderator. There were greetings and mutual respect for an audience full of transplant professionals, transplant families and State Health Workers.

The first speaker was David J. Cohen, M.D. Professor of Clinical Medicine; Medical Director, Renal Transplantation, Columbia University Medical Center, New York, NY; Member, Board of Directors and Chair, Public Policy Committee, American Society of Transplantation.

Dr. Cohen's presentation Kidney Transplantation in the US 2010: Successes and Challenges, was direct, full of current statistics, and had plenty of suggestions to improve the current system. Dr. Cohen talked about problems in the system that laypeople usually never hear about. The disparity in practice between transplant centers. There is no uniform protocol, there is government mandated uniform reporting, but centers can pick and choose how aggressive they are when it comes to procedures. Do they push for extended criteria kidneys? Do they push for paired donation? Or do they strictly stick to the UNOS and living related donors? Dr Cohen really highlighted the under-tapped resource of paired donations, and he stressed that this is solely in the purview of the individual center. There is no national or regional system. In his center, they do the matching by hand and they assess the cases on an individual basis. My question, wouldn't a regional registry help? But Dr. Cohen notes that then, you would be asking people to wait.

Dr. Cohen also spoke about the reality of transplant being rationed medical care. The fact that only 20% of people in CKD5 are listed for a transplant. He posited that there were possibly 100,000 dialyzors (which would be about 25%) who could be listed, but for some reason are not. Dr. Cohen also stated that 30% of those on the UNOS list have significant levels of antibodies, extending their anticipated wait time. (My take: and thus, skewing the wait time average)

Dr. Cohen also used another phrase that I would like to point out: A transplant center's "Discard Rate": organs that go unused, for whatever reason. After listening to Dr. Cohen, seeing his slides and numbers, it's clear that there are gaping holes in the current system. These can be fixed, numbers can be brought up dramatically by simply fixing what already exists. With better organization, better communication and more informed patients.

He concluded on a hopeful note - by discussing some of the cutting edge protocols that are on the horizon for lowering PRA.

2010 is indeed a time of great success for renal transplant, and it is also a time of great challenge, because as long as inroads are made, the demand will rise for those who are eligible and desiring a kidney transplant.

Taking Kidney Disease to the Hill: It Pays to be Organized

by Anna Bennett

I participated in the PKD Foundation's Annual United on the Hill Event on March 1st & 2nd. It was eyeopening to say the least, what a week to be in the Congressional buildings to discuss health care. Recently, the PKD foundation hired an amazing National Director for Government Relations, Kimberly Cantor. I was greeted on Monday with a slick, easy to read binder, a personalized appointment sheet (all meetings were set up by the PKD foundation in advance) and leave behind packets for the PKD Lobby, emphasizing the PKD issues (or in polispeak, the "asks"). The addition of Ms. Cantor brought the PKD Foundation to a new, professional level.  100 people from all over the United States, all affected by PKD rallied and took the call to the Hill, talking points in hand, having been prepped in the ballroom of the K Street Sheraton for a day on the issues, then on Hill day, given a kick-off breakfast before being bussed to the base of the Capital. Let the lobbying begin.

... government of the people, by the people, for the people, shall not perish from the earth.
The office buildings on Capitol Hill are buzzing with suited blackberry toting staffers, along with many lanyard wearing groups like the PKD Foundation, and others who are there to plead their cases to their elected officials and staffs (mostly their staff). News crews set up and break down on the steps of various buildings, waiting for a sound byte. The politicians and their staff can avoid being above ground totally by using a series of tunnels that join the buildings on the Hill.  The tunnels and the cafeteria is where it is at.  I met a friend for coffee before my first meeting on the House side of the Hill, and we listened as young staffers commiserated about being yelled at by constituents on the phone at one table, a defense contractor talking bids at another table, and the corn lobby preparing for a presentation. It was exciting and fascinating and I am no stranger to the Hill. At the forefront of my mind is that statistically all these people's lives will be touched in some way by CKD.

With Ms. Cantor at the helm, the Foundation can easily track their successes.  One goal was to get more co-sponsors for the immunosuppressive drug bill (H.R. 1458/S. 565) it worked, just the day after, there was a congratulations call from the sponsor's chambers.  By going in to their representatives and putting a face and a story on the impact of the issue, three Representatives have already signed on, bringing the total to 83 co-sponsors in the House.

What I learned by joining this group on the Hill?  Organization, focus and passion can work.  Personally, I don't agree with the niche marketing and "transplant or die" stance that I saw during prep.  I eventually started having a physical reaction each time I heard a person with a microphone (either from the audience or the podium) say "a person on dialysis can't work." The people at my table were worried I may explode. But I took a deep breath, and then on a one-to-one basis, I spoke with people about the options that are out there. I described myself as an "Advocate for dialysis reform with PKD". I told my story, I pulled up my sleeve and I showed off my fistula.  I recommended them to online sites Home Dialysis Central, Kidney School and IHD.  I was in a room with 100 socially charged advocates for a debilitating kidney disease, and I found myself correcting misinformation.  That was my real lobbying trip. Meeting with my Representatives and Senators, yeah, that is what they do for a living, they have a voter base to keep track of.  The PKD Lobby's voice was heard, language will stay in research programs, and PKD will keep its finger in the pie, thanks to the preparation, research and organization of the Foundation and the leg work and passion of the volunteers.

But, our health care system is failing fast.  Medicare and the sustainable growth rate (SGR) formula was poised to cut Part B physician payments 21% on March 1st.  There has been a 30 day delay as of the time that I write this, but I'll tell you, nephrologists across the country are sweating bullets, wondering how they will be able to keep their practices afloat. There are so many issues that affect our daily existence with CKD-5.  My advice, pick an issue, focus it, and let your voice be heard.

All Politics is local
My final leave behind to all of the people that I met on the Hill on Tuesday was the closing paragraph of my thank you e-mails, and that's how I'll close this post:

On a personal note, please, if you got anything from our meeting, just know that should anyone in your life be stricken with any form of kidney disease, it is not an immediate death sentence.  Even though just a small percentage are eligible for transplant, and kidneys are scarce, there are GREAT therapies today and people are able to thrive rather than just survive on dialysis. My own personal mission is to let as many people out there know that they need not accept minimum treatment for kidney disease.

Salt: News from the American Heart Association

By Anna Bennett

For those of you keeping score, the American Heart Association just issued a press release (nod to HDCN for the link) about recently published data from the CDC. (Bolding my emphasis)

“The new CDC data adds to a growing body of scientific evidence that supports this recommendation – there are now a substantial number of scientific studies that show a direct relationship between salt intake and a rise in blood pressure. An upper limit of no more than 1,500 mg could significantly reduce the rate of high blood pressure in the United States.”

The U.S. food supply contains excessive amounts of sodium (salt), which makes limiting sodium (salt) consumption to less than 1,500 mg difficult. According to the CDC report, Americans over the age of 2 consumed a daily average of 3,436 mg between 2005-2006, up from a daily average of 3,329 mg from 2001-2002.

I am curious to hear the Salt Institute's take/spin on this data.  It is right there.  Every little effort can help for people to live a longer, healthier life.  We need to be aware of what we eat, because in some cases, it is killing us.  As I have written before - (so much that we now have a Salt topic), about the NYC War on Salt, and about Hidden Salt, and the reality of excessive salt, we need to be aware. I am just glad that The American Heart Association is on board to counteract the marketing efforts of the Salt Institute.

Dialysis & CKD Blog Report 3/15

By Anna Bennett

I am going to start today's blog report with a comment.  I have learned a lot in the past three years of being in CKD5 and being active on the internet.  The most important thing for me is to LIVE and celebrate our survival, when I was in center at DaVita Life Care, when I was at home on NxStage and now with my transplant. 

These blogs below are people sharing their lives with us, we can gain insight, encouragement and friendship here in cyberspace. World Kidney Day is not just about advocacy, it should be a time to celebrate our survival and remember those who have gone before us.  Watching Who Lives? sitting next to Bill and his mother, near Karol and others who I have met along the way was a highlight, my CKD Christmas and Thanksgiving rolled into one, for that, I am truly grateful.  And for those of you who wanted to be there but couldn't be, well, you were there with us in our hearts.

Now, on to CKD related blogs updated since Bill's update on 3/11. If you have or know of a blog that should be on the list let Bill know.

• Dialysis from the sharp end of the needle Our biggest week EVER. Peter, Rich and Bill along with many many comments; The petition, the Play, ER, Bill's trip to Houston, the blog is growing
• Kamal Shah's Blog the petition; Dynastic politics; World Kidney Day
• Kaply, Inc. supply delivery screwups (I reallly feel your pain!); Housing inspection stress
• Toastiest has nothing to say (I've had those days - really I have - ok, maybe not...)
• CHRONIC POSITIVITY - Life with Polycystic Kidney Diseasea catch all post of updates, things are good, taking time off from second job, wife in a better position, sister better, taking stock on life's random details
• Stayin' alive props to Who Lives? (maybe we could find a copy of the script - Bill is pretty well connected! - I wonder if they will videotape?  Unions may not allow); A new endeavor writing Historical Fiction (sounds exciting)
• Hasten down the wire survival of Journalism, two posts on single payer health insurance; the costs of private insurance; rational fear of layoffs (a lot of brilliant writing to digest - I'll be back to re-read)
  
• The Life of a 20-Something With Lupusthe need for self set up dailysis machine (Bill is right there with you, Cairny can't do it, he'll bite through the saline bags and he dosen't have thumbs - or fingers...for those of you who are new, Cairny is Bill's dog, not an amputee); multiple choice tests
• Nitey Nite- a nocturnal dialysis blog a very nice looking dialysis chair for nocturnal treatments
• Living Out Loud mother got the call; a meme; World Kidney Day
• Jack's Kidney Adventure wakes up in bed next to his wife and realizes that he has to pee (that is the definitive sign that your transplant was a success, you are at home and peeing and peeing and peeing, we'll be hearing more for this, the next chapter of Jack's Kidney Adventure.  And let me be the first to say WELCOME back to the world of Urinators)
• Life on dialysis ... and now life after my transplant! a very special liver transplant; donor desks for donor day; filming advocacy day
• On the Road to a Cure a great turnout for advocacy day
• I Am. Are you? a very effective Donor Registration commercial - showing a child on in center dialysis
• Kevin’s Blog Kevin's personal testimony when volunteering at a rescue mission
• Chronic Chick Talk writer's block; The importance of taking control of your own medical care
• Dialyse This dialysis demolition day with a picture of what it would look like if Dialysis machines took over the world(I LOVE IT and Big Ben in the background); complaint about nurses who pull permcaths
• Bud's Ramblings tests,tests, tests and more tests then dialysis. (I hope all is well, and this is just precautionary)
• Disability Prejudice And Civil Rights Watch a very scary story of a misdiagnosis; the petition; the arrests in the enabling of Anna Nicole Smith including over prescribing and medical ethics violations
• Renal Fellow Network thiazide diuretics (A very common family of diuretics used for hypertension therapy)- could increase risk of diabetes; refeeding syndrome
• The Nephrology Blog TAKE CARE OF YOUR TEETH "Patients with moderate-to-severe periodontal disease had a 5-fold increase in CVD death after an 18 month follow up" (CVD is Cardio Vascular Disease); a Japanese Study done on only Japanese men studying creatinine and diabeters
• Diario de diálisis Crónicas, reflexiones y sentimientos de un paciente que comenzó un tratamiento de diálisis (In Spanish)  Journal dialysis - Chronicles, thoughts and feelings of a patient who started a dialysis treatment (Google translated from Spanish) He takes Argentina's misnistry of health to task for not promoting preventative renal medicine and NO MENTION of World Kidney Day (shame on them); WKD is promoted by Argentine Society of Nephrology and Fresenius
• Bondservant Diary original mountain music of Appalachian America (now my soundtrack for the rest of the blog report!); an infected permcath; the loss of a friend from the unit; the petition;World Kidney Day
• Neophron's Senescence question what is the worst job you ever had?  His answer:  Selling Movie star maps on Sunset Boulevard (we were just there even worse job? - the celebrity impersonators on Hollywood Boulevard)
• pkdmom2five new haircut; World Kidney Day
• Mid-life ramblings family and a picture controversy (I say leave it up, dialysis does not define us, but it does keep us alive and should not be hidden); taking stock in what does define her
• PKD World World Kidney Day
• The Ballad of Billy The Kidney World Kidney Day and the petition
• Berns on Nephrology looks at the excess use of tunneled dialysis catheters
• Biologically Safe Water Filters Home kits (not dialysis related)
• Kidney Community Emergency Response FDA Alert: Colleague Single and Triple Channel Volumetric Infusion Pumps by Baxter recalled
• Renal BizBlog World Kidney Day
• Kidney Diet Tips Kidney Diet on a Budget - Helpful hints and links
• Living with PKD home from a cruise

Who Lives? We do.

By Anna Bennett

Pico Playhouse is a small, intimate Los Angeles theater and on World Kidney Day, it hosted an impressive group of talent. Those on the stage and those in the audience.  The production of the play Who Lives? written by Christopher Meeks, was a three year labor of love by producer/advocate/survivor Lori Hartwell of the Renal Support Network.

Christopher Meeks is a very talented writer with an impressive Hollywood resume.  He developed the idea for writing Who Lives? when he stumbled across the Life Magazine article that dubbed this early Seattle effort the "Life or Death Committee" ( Dr. Blagg reports "We called it the Admissions Committee" (pdf link).  This is a fictional story based on a real, medical history altering period of time in Seattle.)

Seattle in the 1960's was at the heart of dialysis's Wild West period.  A time when inaction meant death. A time of intense, hands on collaboration.  Who Lives? is a story glued together by one man's journey from perceived health to CKD5 diagnosis, to a fight for treatment and finally, a heroic (?) decision. 

The dynamics of his relationships with his physician (identified as a resident), his wife, his secretary, dialysis staff and the committee are the touchstones of the many journeys that a person with CKD5 must take.  A medical journey, a personal journey and an ethical journey.  This was true in 1960 and still just as true today.

Bill saw the Committee as a dialysis version of 12 Angry Men.  High on discussion, debate  and a cast of exaggerated individuals.  I saw them as a Greek chorus - giving voice to each aspect of the story - fleshing out ideas and social concerns - all the isms were represented, racism, ageism, sexism... all of the ugly in society was addressed, and a cliched romantic view of the future was proffered from a play set in 1963.  Unfortunately, we don't have flying cars in the 21st century and we still have all the ism's, we just sublimate them.  No conclusions are offered by Mr. Meeks - but I don't think that is what he was going for.  Who lives? is thought provoking, sobering and heartbreaking.  It is the story of a patient, turned advocate, his medical team, and the everyday people hand picked for an anonymous, thankless task of deciding who gets treatment and who will be left to die in nature's unmitigated grasp.

Thanks to the work of countless doctors, engineers, patients and others in Seattle, today no one need be left to die.  The CKD decade, the '60s, produced heroes and technology that has sustained millions of lives.  Who Lives? is a dramatization, and those with intimate knowledge of CKD5 and the work of the Seattle Artificial Kidney Center (now Northwest Kidney Centers) are best to suspend disbelief and see it as intended, as a work. It is art.  The real story of those on the committee and the people who were chosen is still being told.  Who Lives? is a great dramatic production that brings our history to the mainstream.

Who Lives? has a familiar Hollywood cast.  (Two with CKD5 who have transplants)  The star, playing the central character Gabriel, is Matt Gottleib - his portrayal of Patient #14 is an amazing journey. 

Monica Himmel plays Margaret, his beautiful, amazingly dressed, long suffering caretaker/wife. Her attempt to find balance in a helpless (and seemingly hopeless) situation is poignant and moving. We see her wordless suffering in everyday tasks - breakfast, doing laundry - her portrayal does every CKD spouse/caretaker proud. 

Richard Adkins had a wordless yet moving role. He brought voice to the soundtrack with his violin, it sets a mournful tone for the dialogue to come, and his virtuosity adds beauty to the production.

Rachel Kimsey plays committee member Alice, a pert, idealistic, sexy coed.  Rachel plays Alice as the voice of the future. One imagines Alice finishing school, jumping in a van and motoring off to Woodstock, before settling down as a professor at a liberal arts college. 

The Director Joe Ochman brought these characters to their full potential, and showcased Mr. Meeks words in a brilliant, straightforward production.  What you see on stage is raw emotion filtered through a very talented cast. 

Rounding out the cast is Matt Crabtree as Dr. Shuster, a young doctor just starting his career, Dale Wade Davis (CKD5 with transplant) is Lazlo, an everyman, the voice of the people who is ever so distracted by the beautiful coed Alice. 

R. Martin Klein (CKD5, transplant) pays dual roles as Baxter/McKnight.  Baxter is a grating, power hungry committee member, and then Mr. Klein turns it around and plays a patient slowly declining, suffering, who wants to end it all. 

Tracey Rooney plays dual roles as Jenny, secretary to Gabriel and Nurse to Gabriel.  She too, is the voice of what is to come in the role of secretary, and in the role of nurse, she brings a dissociative medical proficiency to the dialysis scenes - she truly is a chameleon.  It took me two scenes to realize that she was playing dual roles. 

The mother and father of this fictional version of the committee were played by Alice Ensor as Francine and John Timmons as Father William. Ms. Ensor played Francine as a blousey 1950's housewife who hides a sharp intellect, a depth of perception and observation that grounds the committee, all hidden behind the facade of insecurity, school runs and subservient mannerisms.  And finally, John Timmons in the role of Father William is the head of the committee, a voice of reason, who although clad in the garb of a Catholic Priest, negotiates like a hardened litigator.

Bravo to Lori Hartwell, the many hands of RSN staff and volunteers, Christopher Meeks, the cast and the crew. This production is a very special tribute to those who came before us, and a message of hope for the future. 

Hopefully we are long past the days of dialysis rationing, and our new heroes are those developing portable high dose dialysis, better more efficient anti rejection medication and a support infrastructure like that of the Northwest Kidney Centers. All those who continue to work so that a CKD diagnosis does not mean an end to the life one wishes to live.

Dialysis & CKD Blog Report 3/8

By Anna Bennett

This a long overdue report of the CKD related blogs updated since my last update on 3/1. Bill has been at the Annual Dialysis Conference in Houston, he is about to touch down at home in Seattle, then turn around to go to LA for World Kidney Day.  March is a busy month from the sharp end. If you have or know of a blog that should be on the list let Bill know. The parentheticals are my comments (and there are MANY this week).

• Dialysis from the sharp end of the needle DHHS budget; New Health Reform Czar(ina) (formerly on the DaVita payroll); Salt (again); ER; Bill has a very successful live blogging session; nine Hepatitis C infections at my old unit (just another week in the dialysphere)
• Kamal Shah's Blog Film Awards season in India; in search of perfect chocolate fudge; Radio - less public service preaching, more music; disappointed in the medical bureaucracy (also influenced by big business); graffiti bad (with pictures) (here in NYC, graffiti is now considered an urban art form)
• Kaply, Inc. some very personal revelations; blogging will be lite for the foreseeable future - working on non cyberspace life (You can find the balance, I have complete faith - and once you do, maybe I'll give it a try!)
• poetry on dialysis continued an early morning encounter with a sexy woman at a train station; death as another place.  (Eloquent, brutally honest posts about male sexuality, dialysis and mourning the loss of a life that was before)
• Toastiest pet pictures; the difference between Wholefoods recycling and a flea market; asking for a type B kidney; calling out neighbors who leave their pets in the cold; becoming part of the economic downturn
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease  evening in the emergency department dialysis and the search for the genesis of high potassium to r/o dietary potassium
• Hasten down the wire a post viewing two economic options; hyperventilating political pundits from both sides; paired organ donation software (very cool, algorithms waaay over my head.   - I let Bill be the math/algorithm genius); secret legal opinions from the Bush administration - no longer secret (I am afraid that we will be uncovering these traps and constitutional offenses for years to come)
  
• The Life of a 20-Something With Lupus doing very well in school, too busy to blog (that is a good thing!)
• Nitey Nite- a nocturnal dialysis blog the downsides of dialysis - a much needed (and well received) post about the annoyances that we all have to live with
• Living Out Loud is doing the kidney walk; enjoying her boys; cooking & recipes; a Friday meme
• Jack's Kidney Adventure transitioning from an address book to maintaining old friendships and finding old friends via online social networking, redefining "family" and filling in the blanks; blogging in lieu of letter writing (call me a Luddite, I am still a fan of cards and letters even though I blog - I like one to one contact);Bacon & Egg taco + doughnut/before dialysis = barf (and I said I didn't do equations algorithms); normal phosphorus (with a scan of smiley faces and all!); following Peter's call to arms post at DSEN for all dialysis researchers; religious study, Hinduism and Judaism; A couple of very good dialysis sketchs (you are very talented, DSEN could use some illustrations hint hint - Be prepared, Bill has this "thing" about vampires and unicorns)
• Life on dialysis ... and now life after my transplant! Forget-me-not flowers for her donor and family; Organ Donor Register; working on "Donor Day" and a pic from recovery; in conjunction with World Health Day (7 April 2009) - organizing a World Donor Day
  
• Let us Consider One Another back from trip seeing family
• On the Road to a Cure LFA's "Kidney Involvement & Lupus" Webchat to be held Wednesday, March 11 at 3 p.m. Eastern; call to congress
• Really, I'm as Old as I Feel? freaky weather snow then sixty  (NYC too!)
• I Am. Are you? donate life month, Highlights
• Transplant Alliance NASA TV; Hep C in Manhattan Unit (my old DaVita Unit); Don't let anger steal your health (a GREAT post) "Through the anger, they hurt themselves much more than they hurt the others. The pain they send out through their anger is greatly reflected back to the one who is angry. Anger is more than a mirror; it is a magnifying mirror."; flu, antibiotics and infection
• Chronic Chick Talk starting a small business at home; a poem; a good night's sleep
• Bud's Ramblings a music video of a favorite hymn; a parable about love and relationships; a quiet day, dinner out and a restless night
• Disability Prejudice And Civil Rights Watch Saturday morning link fest; thoughts and observations on the Treatment Advocacy Center; Assisted suicide group not being followed by mainstream media; calling out the disparity between male and female voluntary institutional housing
• Precious Bodily Fluids finding a typo in i-phone medical app (sigh, typos make me cry); a very cool cross section of kidney with emboli; studying ABG to the tune of "Who wants to be a Millionaire" (I get it - loved Slumdog - it would have been a great soundtrack for a plastics/Botox tutorial...) (More important, Dr. Topf is putting on the web the science that our nephrologists study, breaking down the patient to the cellular level and studying the interactions therein - seriously getting to the root of the problem - we the patients only see and feel the symptoms, but they are cured/alleviated at the cellular level); A video spoofing medical school; MedCalc for the iPhone; Nephrology calculators for the iPhone  - with reviews; a nephrology consult service syllabus notes - with pdf handouts (my inner geek is doing back flips!)
• Renal Fellow Network a spoof video of "turfing" from an outside hospital (translation:  private hospitals over treating non-symptoms for $$$$, then turfing the pt to your hospital to treat the actual complaint - yes folks this does happen, quite often); discussing a paper exposing the under use of aggressive ACS treatment when CKD is the primary diagnosis (Darwinistic and sobering example of the importance of m&m numbers in practice); skin problem in CKD uremic puritis (with picture); urinary ascites (picture looks like octomom - except there are no babies in there, just urine); there is no N in ATN - notes from grand rounds; Fish Oil for IgA Nephropathy? mixed data but not totally without merit
• The Nephrology Blog acute kidney injury + stroke = not a very good outcome (again, what is it with me and math?); studies show that seeing your nephrologist early and often before total kidney failure can benefit survival; inconclusive review for aldosterone therapy; calling out DaVita for the Lifecare Hep C debacle; Nephrologists and the need to be able to identify urine sediment (in defense of those practicing and not teaching/practicing,  when was the last time they looked through a microscope?  The majority  - if not all in office visit lab work  is outsourced); a shout out to the New York Times on-line multimedia "Voices of Kidney Disease";CKD increases the risk of ischemic stroke with arterial fibrillation (translation: take care of your heart - dialysis won't kill you, the complications will); the risks of hypertension in breast cancer survivors; DaVita ranked in the top of most respected companies (hahahahahahahahahahahahah sorry, I couldn't help myself.  Just read about MY history with DaVita both with DaVita Lifecare and DaVita Columbia - now, I'll just keep laughing and then cancel my subscription to Fortune)
• Bondservant Diary photo comparison - Franciscan monk - or snuggie you be the judge; feeling nearly human; daylight savings rant; another shout out to NY Times Voices of Kidney Disease (I really like it much better when Bill is the one in the spotlight - I am much more a Dark Shadows kind of gal); the 50 "Manliest Cities" (Seattle #40 - I just had to look); very cool paired donation technology
• pkdmom2five the bible will not be avoided; a poem for school bus drivers; welcomes a new blogger
• Kidney Notes - Exploring the Intersection of Medicine and Technology bizarre devices from medicine's dark past (men DO NOT look); med calculators for i-phone h/t to Dr. Topf
• My Wife Has Lupus - Support for individuals whose family or friends have lupus LFA advocacy day
• Waiting for a transplant anniversary transplant clinic appt, heart issues, contrast dye bad for new kidney
• Lemonade and Kidneys likes cobb salad, Sweet Pleasures website open (Cakes look AMAZING)
• Stiiiiiiiiiiiiiiiiiill hoping someone can spare a type A or type O kidney....graft working, donor work up progressing
• Mid-life ramblings busy cleaning, opts out of transplant (that would be you, Peter, Bill and many many others.  Studies show that high dose dialysis rivals the outcomes of deceased donor transplant. This is a reminder that transplant is not for everyone, and by no means is transplant a cure - it is simply a very portable form of renal replacement that has its own complications); some days it is good to be home; New genealogy software RootsMagic 4; create beauty - a reminder to cherish what is beautiful in your life and the annoying can be minimized; pictures from Hawaii (cool - zipline!!!); Medicare issues and worries; facing a pet's mortality
• Kidney Community Emergency Response Preparing for the Next Disaster: Dialysis Community Briefs Hill About Emergency Response (I'll let Bill discuss that. My idea of prepared is an up to date passport and a month's supply of meds)
• Renal BizBlog Recession Tough for Independent Dialysis Providers
• Kidney Postings Kidney headlines cites a flawed title (no wonder, this is DaVita - good therapy costs too much money - see Peter's post When science becomes propaganda)

ER: Is Dr. Carter going to die?

By Anna Bennett

Even though March 12th is World Kidney Day, March really is World Kidney Month.  We are seeing mainstream press write about dialysis, kidney failure and transplant.  CKD5 is in in prime time, watched by millions of people who are emotionally attached to the character played by Noah Wyle, Dr. John Carter.  In tonight's third episode "What we do" of the Carter is sick story line, he is back, has revealed that he is in kidney failure due to prior trauma and amyloidosis secondary to chronic inflammation from Schistosomiasis.  He is back in Chicago, and waiting on the UNOS list for a deceased donor kidney.  We covered all of this is our prior posts. (3/7 episode SPOILERS after the jump)

Complaints can save lives: Hepatitis linked to closed NYC Dialysis unit

By Anna Bennett

The saga of my old DaVita Unit, Life Care Dialysis continues.  Today the New York Times ran the article Manhattan Dialysis Clinic May Have Infected Patients With Hepatitis C.

Excerpts:

The patients whose infections were genetically linked came in for treatment on the same days of the week, and two had been hooked up to the same dialysis machines, the investigators reported.

The clinic tested patients occasionally for hepatitis C and was aware that some had tested positive for infection with the virus, but it never informed those patients or state health officials as required, the report said.

The investigation was triggered by a patient who called state health authorities in January 2008 to complain that the clinic was dirty, said Dr. Jenifer Jaeger, a C.D.C. officer assigned to New York State and the new report’s principal investigator.

The Office of Health Systems Management, part of the New York State Health Department, began an investigation in March, Dr. Jaeger said. It found, among other things, that the patient who made the phone call had tested positive for hepatitis C in January. “She had not been informed,” Dr. Jaeger said.

and

The dialysis center was described by the investigators as a filthy place where employees did not wash their hands properly, disinfect equipment or always wear gloves when treating patients. Dried blood was found on treatment chairs, bleach solution was not stored or prepared properly, and there was no separate clean area for storage or preparation of medications.

The dialysis center, located at a convenient spot near public transportation, operated at full capacity, and turnover time between patients was short, investigators said.

In one case described in the report, a single bleach-soaked gauze pad was used to clean an entire patient dialysis station, including the machine’s surfaces and equipment like the blood-pressure cuff and shared computer monitor and keyboard. Many staff members were unaware of the center’s written infection control policies about cleaning and disinfection.

I could write for days and day with editorial commentary about this story.  The lesson learned, one patient made a phone call that saved many more from possible infection.  If you see something wrong, complain to the State.  These are our lives, and the lives of the people that we love - silence kills.

How to complain:  (from aakp's What Should I Do If I Have a Concern With My Dialysis Facility?

Alternative Complaint Resources

If you have identified an area of concern and you do not feel comfortable reporting a complaint to your physician or using the grievance process put forth by your clinic, you always have the option of reporting the complaint to outside agencies. The two primary agencies are the ESRD Networks and your State Survey Agency. Both are capable of receiving and acting on your complaint either alone or with the other agency.  

The ESRD Networks, of which there are 18 throughout the country, are contracted by CMS to receive and act upon patient complaints. Your clinic should have your Network’s number posted or you can ask a staff person to provide you with the telephone number. You can also access the Forum of ESRD Networks on the Internet at www.esrdnetworks.org. This site contains a detailed map of the areas covered by each ESRD Network, as well as a link to the Web site of each individual Network.  

The other alternative is to contact your State Survey Agency directly. State Survey Agencies are responsible for the licensing and certification of outpatient dialysis clinics and handle individual patient complaints. You can access a directory containing the contact information for your State Agency on the CMS Web site at www.cms.hhs.gov.

Finally, here is a link to my post about NY's ESRD network reaching out to me after the DaVita Life Care closure.

Let's get real: Salt

By Anna Bennett

The Salt Institute and its British doppelganger The Salt Association, are salt industry trade associations (advocates for the salt industry).  From their websites, we are led to believe that salt is getting a bad rap, after all we need salt to live.  On that one point, I will agree. Our bodies do need to maintain fluid balance (homeostasis) to survive.

What our bodies do not need is an excessive intake of dietary sodium.  This is where I disagree with both the Salt Institute and the Salt Association.  The Salt Association not only calls the NYC War on Salt "foolhardy"  but also provides journal articles to support their position on the perils of a low salt diet.  Richard Hanneman, Salt Institute President, posted a comment to my initial post with two studies both showing that a low salt diet was not beneficial to patients in compensated congestive heart failure; and in patients with recently compensated heart failure.

These studies were done on patients who were in the full throes of cardiac disease.  While the nuance is appreciated, the overall indisputable public health fact is WE ARE EATING TOO MUCH SALT. 70% - 80% of our daily salt intake is from processed foods. 

Using excessive salt as a preservative, flavor masker/enhancer is big business. Con Agra, Pinnacle Foods Group, are two of the biggest.  Check out the products that they produce. Name brand, shelf stable, and even the foods labeled "healthy" are over laden with salt.  Of course the industry is threatened when a major city tries to educate its population.  What would happen if people actually started to read their food labels and made educated choices when grocery shopping?  Or, if fast food actually were forced to highlight their sodium content at the point of purchase.  An educated public is dangerous.  It may force manufactures to rethink their ingredients or they may just have their Institutes and Associations beef up their marketing trying muddy the discourse and give the appearance of unsettled science.

NYC's War on Salt is about awareness, and trying to fight an epidemic of ill health that is crippling our society.  We can toss medical studies back and forth and discuss this for years (that would be just fine to the Institutes). Declaring war on salt is a public health measure that is long overdue.  Drawing the line by shinning a spotlight on the excess sodium in processed foods is ground zero.

How much sodium should be in a normal 2000 calorie per day diet? That is not an easy number to pin down.  The USA consensus seems to be for a normal, healthy person, < 2,400 mg per day.

The Canadians (who's governmental healthcare is a bit LESS influenced by lobbying, marketing and special interest) put the normal/healthy intake number firmly at 1,500 mg per day.  In this case, I'll stick with the Canadians for guiding my base salt intake.

How much salt is in a:

Wendy's Breakfast Burrito	910 mg per burrito	60% daily sodium
Big Mac	1040 mg per sandwich	69% daily sodium
KFC Chicken BLT Salad	1020 mg per salad	68% daily sodium
Subway Roast Beef Salad	480 mg per salad	32% daily sodium
Domino's Deep Dish Pizza 1 slice (1/8) no toppings	530 mg per slice	35% daily sodium

The list could go on and on and on.  In this fast food environment it is very difficult to adhere to the RDA diet.  One meal could easily fill the whole days requirement.  Yet the Salt Institute is concerned that The City of NY is being foolhardy in declaring "War on Salt".

In these current economic times, one company seems to be recession proof.  McDonalds - more and more people are eating fast, cheap meals there.  A McDonald's side salad would be great: 10mg of salt.  If you add a packet of Newman's Own low fat sesame ginger dressing you add 740 mg of sodium  (49% of your daily sodium).

When you are on dialysis (or trying to keep a transplanted kidney viable) you need to be AWARE of everything that goes in your mouth, and the ramifications of what you eat.  It could be the difference between comfort and cramping, thirst and dehydration and in the long run, life and death.

Dialysis & CKD Blog Report 3/1

By Anna Bennett

CKD related blogs updated since Bill's  last update on 2/27. If you have or know of a blog that should be on the list let Bill know.

• Dialysis from the sharp end of the needle Peter issues a challenge, a podcast about the 2010 NxStage cruise
• Kamal Shah's Blog why so many political rallies? What is the point? Make a life to-do list "If you wish for something with all your heart, the whole world conspires to get it for you" (I am updating my list as soon as I finish the blog report...)
• Kaply, Inc. a government conspiracy suspends commenting (maybe technical glitch)  update: comments now working
• Toastiest an exclusive - password protected post
• Stayin' alive renal diet - highlights the basics and tries to "eat around" the fixed menu of current housing scheme, a recipe for Posole with h/t to Anthony Bourdain (my favorite travel tv personality/food writer)
• Living Out Loud a Friday meme
• Life on dialysis ... and now life after my transplant! new video
• Let us Consider One Another rain in NC
• I Am. Are you? a follow up on the Hustle up the Hancock stair climb.  (nice victory photo - I would have been crumpled in the corner by the 20th floor)
• Bud's Ramblings a quiet Saturday, wondering about snow on Sunday, life's bits + pieces
• Disability Prejudice And Civil Rights Watch post about an upcoming news report on an assisted suicide group - they may have been aggressively "assisting" the not really suicidal
• Renal Fellow Network oral rehydration a breakdown of Gatorade - invented by a nephrologist (I am a fan.  BUT, the best way to avoid dehydration on dialysis is LONGER, SLOWER treatments)
• The Nephrology Blog studying the correlation between vascular issues and progression of CKD
• Bondservant Diary a night out - dinner & a movie
• Neophron's Senescence thoughts on Black History Month
• My Wife Has Lupus - Support for individuals whose family or friends have lupus tips on using social networking to boost awareness.  March 3rd is LFA's Advocacy Day
• Stiiiiiiiiiiiiiiiiiill hoping someone can spare a type A or type O kidney....a free Saturday, and looking forward to a living donation before Easter
• Mid-life ramblings posts a video
• Kidney Diet Tips beware of fast foods (hmmm where have I heard that before?)
• The Ballad of Billy The Kidney hes baaaack, busy studying (and posts a picture of my favorite fictional Doctor)

ER: Dr. John Carter says why he needs dialysis

By Anna Bennett

Bill, Peter, Mel, Harvey & I, the writers at DSEN live with kidney failure every day.  Bill, Peter and Harvey are on dialysis, Mel & I were on dialysis and last Fall, we both had transplants.  We write about dialysis and transplant from a first person perspective.

From a fictional dialysis standpoint, the beloved Dr. John Carter (Noah Wyle) returned to the show ER, looking for some part-time work, road weary (or so we thought) his wife behind in Paris visiting her mother but he was minus working kidneys (we call that CKD5).  Last week, the last scene was of him on dialysis.

Bill & I have been following this story arc quite closely.

This week, during ER's "T- Minus- 6" episode we find out why he is on dialysis (details after the jump Spoiler Alert)

Salt Institute: Putting profit before health

By Anna Bennett

Thanks to a particularly irresponsible recipe distributed by the Kidney Support Network of Australia in their Christmas Newsletter, we at DSEN have been looking even deeper into the dangers of salt and the misguided "experts" who promote today's excessive salt use in both the CKD community and the general public.

Unlike tobacco, which has no health merits, salt (NaCL) contains electrolytes, and we need some salt in our diets for proper cell function and overall health. If we are in any stage of CKD, we need the bare minimum of salt in order to not do any further damage to our bodies.  This is why we are put on a low sodium diet as soon as we are diagnosed with CKD.  This is a difficult balance, when we need some salt, but we need to control our intake, and we as a society have been inundated with salt in our modern diets.  Salt in all of its various forms is a preservative and flavor enhancer.  We are used to it.  In some cases we crave it, and we have to retrain our taste buds.

Now here is the battle that we have to fight.  The Salt Institute exists to promote the use of salt in all of its forms.

From their website:

The primary activity of the Salt Institute is advocacy -- to governments, our customers and the general public – creating and providing information about the production, distribution and uses of salt, including the benefits and costs associated with salt usage.

Yes, in our hypertensive, overweight society, there is an institute that exists to promote the benefits of using salt.  They refute health issues.  They call NYC's public health measures "foolhardy".

Take a look at the letter Richard L. Hanneman, President of the Salt Council sent to the Commissioner of Mental Health and Hygiene of New York City when NYC declared war on salt to combat the spiraling out of control health issues of the 8 million + people of the City of New York.

Excerpt from the letter (bolding my emphasis):

We urge you to join with us in seeking federal funds for a controlled trial of the health outcomes of salt reduction. Such a study can utilize the proven protocols of the Trials of Hypertension Prevention and be accomplished in five years at modest cost compared to those your policy would impose on consumers and food manufacturers. Until we have a controlled trial to formally test the hypothesis that reducing dietary salt will improve health outcomes imposing such a policy on the entire population would be foolhardy. We strongly urge you against the course of using the citizens of New York as a grand experiment of this generally-believed but as-yet untested hypothesis.

All I can say is that I doubt that Mr. Hanneman ran that letter past his cardiologist.  And I doubt that Mr. Hanneman has a friend or relative who is in CKD5 due to hypertension.  As a matter of fact, the Salt Council proselytizes that a low salt diet actually causes hypertension - tell that to the overweight middle aged man standing next to you in line at KFC (aka future CKD5 patient #505,339 - if he survives heart attack, stroke or type II diabetes).

From the letter:

We presented the science and left with you a compendium of the published studies describing the literature and showing:

The salt/blood pressure discussion has misunderstood the impact on blood pressure which is heterogeneous; a significant portion of the population when placed on a low-salt diet actually increase their blood pressure

The Salt Institute wants us to need salt.  After all, salt production and consumption is the whole reason why the Salt Institute exists - not for our welfare, but for the industry's profit.

All of this propaganda is being spewed at healthy people.  We, the community of CKD sufferers know better.  I applaud NYC for trying to educate people before it is too late - before they have a stroke or heart attack or their kidneys fail.  The Salt Institute is advocating that we study salt for another five years, put the health of the people on the back burner until science gives us more definitive proof.  (As if the growing numbers of the CKD5 population aren't enough - there is your study.)  When I was in-center, I could look around at the faces in the 30 chairs (always full) surrounding me, and I could pick out those with hypertension  - generally the ones eating cheap Chinese takeout and potato chips while dialyzing. This is a perfect, tragic example of why we need public education as soon as possible.  It is preventative medicine - the cheapest form of medicine available  - stop disease before you have to treat it.

The city of NY wants to tell people that they should think before eating that bag of chips, or that fast food chicken or any other food where excess salt is insidiously lurking - before it is too late.

Life's Oscars

By Anna Bennett

These latest posts about fictional dialysis have brought to mind all the diverse people that I met in my old dialysis unit.  Dialyzing in an inner city unit exposes you to a multitude of characters, a virtual Academy Awards ballot/Oscar ballot (since my typical run was 3:45 min) of outstanding actors.

(names and minor details have been changed to protect dialyzor privacy)

Dick Powell and his wife Myrna Loy, they were inseparable. An octogenarian couple who survived 3x a week dialysis together.  His CKD5 was due to hypertension. Hers, diabetes.

Susan slept here - was a teenager who came in to dialysis and promptly fell asleep, then had to be shaken awake when her run was over.  (I wanted what she was taking - my guess benadryl)

Mark Fidrych, a deep baritone who made his living doing voice overs.  I could listen to him during my whole run.

Oklahoma Octopus, an Okie who had more hands than an octopus has arms when he hugged me hello. I tended to avoid him at all costs.

Pootie Tang and his buddy Wu Tang, they were the rappers of the group.  They always needed to pull their pants up, but were so happy to be friends. Watching them interact made the whole run entertaining.  Even better when they ordered deli food and gave the delivery a guy a dollar to buy them a soda from the machine out front.  Soda was cheaper at the unit than from the deli. Our unit had a no food/ no drink rule.  They flaunted it - gangsta style.

Rajon Rondo had big hair and played the violin at Juilliard.  I always wondered how her up arm fistula reacted to her playing Mendelssohn.  She died.  I miss her.

And finally the Sports Bookie.  He ran our Dialysis football pool.  I wonder how his 2009 NFL combine results will fare.

Well, the Oscars start at 8:30PM EST and 5:30 Pacific.  I'll be watching.  But none of the people up for awards tonight can touch the humanity and bravery that I saw during every treatment at my dialysis unit.

Dialysis & CKD Blog Report 2/22

By Anna Bennett

CKD related blogs updated since Bill's last update on 2/20. If you have or know of a blog that should be on the list let Bill know.

• Dialysis from the sharp end of the needle Bill responds with concern about financial motivation for transplant donation; Dialysis hits prime time television (forcing Bill to wrench himself away from the internet and watch television)
• Kaply, Inc.fathead arrives, Kaply is overwhealmed with need for sleep and recovery from a cold (I hope that you get better or at least your brother can make you chicken soup)
• poetry on dialysis observations on the people in the clinic (read Stacy without an e - bitterness is universal), life is Spain as compared to life in the USA
• The Life of a 20-Something With Lupus the verdict on hot Yoga - will do again (Sweating is good.  The skin can do a tiny bit of the kidney's work - and that is less fluid that you'll have to pull off, and Yoga is good for you)
• Nitey Nite- a nocturnal dialysis blog (we welcome a new blog to the report), posting after the first month of in center nocturnal.  A few adjustments and an overall thumbs up
• Living Out Loud a meme
• Jack's Kidney Adventure a new binder (Renvela) and new icky nausea
• Strnad Family Digest  back at work after transplant, it is official
• Renal Diet Corner updated renal diet handouts
• Transplant Alliance NY Hep C Awareness Day (Hey, that is why my NYC unit was shut down!)
• Kevin’s Blog a post and a picture from Kevin's brother, his living donor (now that is brotherly love.  He should be expecting GREAT Christmas and Birthday presents from now on)
• Chronic Chick Talk picking a web host, seeing the Dr about hurt wrist
• Dialyse This comments on the ER episode
• Mushroom's Blog a great post about abortion, written with a long history of personal observations; really sweet birthday pictures
• Bud's Ramblings removing a shocking 5.6 K (That is not good! see fluid removal post); in closing a poem/Nursery Rhyme
• Disability Prejudice And Civil Rights Watch PTSD, chronic illness and perception; institutional living in its various forms
• Precious Bodily Fluids relearning what he learned in his renal fellowship and facing ACUTE dialysis truths, dissecting an article about a long term multi facility ACUTE study, including editorial rebuttal; (remember CKD5 sufferers, - the goal of treating acute CKD5 is reversal.  In chronic CKD5 (which the majority of us have), it is survival and quality of life. Although the diseases are treated similarly, the outcomes cannot be compared and should not be confused)
• Renal Fellow Network why permcaths should only be a temporary access
• Renal tsar's blog facing the epidemic of MRSA and Hep C, how UK units are fighting the battle
• Bondservant Diary  perils of buying a lightweight wheelchair; recommends a TV show "Corner Gas"
• Neophron's Senescence Kona Hawaii (envious sigh)
• Waiting for a transplant an equal rights reality slap/blog post (well said)
• Stiiiiiiiiiiiiiiiiiill hoping someone can spare a type A or type O kidney.... graft day #2, a fan of Atavian and Percocet
• Mid-life ramblings a day to do what she wants - no demands on her time

As seen on TV: Fictional Dialysis

By Anna Bennett

I spent a year on home hemo before my deceased donor transplant - which translates into watching a lifetime of TV.  It was while watching medical fiction like House, MD and ER that when the word dialysis was mentioned, my ears would perk up, it is like seeing a friend (or rather frenemy )on TV. 

Fictional dialysis shows millions of viewers the high drama of dialysis.  When all of us know that it is really an energy sapping, boring result of a chronic disease, where the real drama plays out in our heads on sleepless nights when we and those we love quietly cry "why?".

The television show House, MD is particularly guilty of fictional dialysis.  In one show, a person was acutely diagnosed with CKD5, and then she was dialyzed via her fistula (huh?  TV fistulas do not need 6 weeks to mature).

The same with transplants - a fictional patient's kidneys fail and boom, the next day they are getting a family member's kidney.  Who needs a transplant workup when you are on TV? Or even better, when a fictional patient gets a deceased donor kidney the next day.  

World Kidney Day is March 12th, 2009 and there will be a lot of media about kidneys, dialysis and transplant.  Don't get me wrong, any exposure is good if it heightens awareness.  But many times, all people know is what they see on TV, then they, or a family member is diagnosed with kidney failure.  We all want Dr. House to be our "Diagnostician"/Nephrologist it seems that he has a team of Doctors that can all care for one patient at a time.  Those of us who have waited hours to see our Nephrologist for a fleeting moment know the truth about our over stressed health care system.

Which leads to the inspiration for this post, ER.  A show conceived by John Michael Crichton, M.D. (1942-2008).  ER has been one of the "better" medical shows for years. On Thursday's episode, the show closes with Dr. John Carter, a beloved character from years past, returning to Chicago.  He offers to work in the ER (for free!) and alludes that he will be around for a while (as the show is in it's last season, a "while" is a couple of episodes) The final shot of the show is Dr. Carter in the quietest, cleanest dialysis unit I have ever seen.  He is hooked up to a Gambro Pheonix Dialysis Machine. Here is a link to the episode, it plays after a 20 second commercial and the dialysis scene is the very last scene.

Dr Agar would be pleased because it looks like the fake needles taped to his fake fistula seem to be antegrade/antegrade (better for the fistula).  And the actor, Noah Wyle does a superb job of the "I am dead inside" feeling that in-center dialysis can cause. (His character is rich, and a Dr., why isn't he doing extended treatments via NxStage at home???)

Well that is it.  Dialysis as seen on TV. We know better, and we know that it can create misinformation and false expectations when a real person is facing CKD5, and all they know is what they saw on tv.  I am glad that Bill and others have real videos on the web, available for anyone to see dialysis reality.

Your fistula after transplant: To keep or not to keep?

By Anna Bennett

I am quite attached to my curvy, lumpy up-arm fistula (it is not my fistula's fault that it is big, snakelike and has an aneurysm).  We have been through a lot over the past few years.  But now I am realizing that stenosis does not stop after your transplant.  While I was on dialysis, I had a standing 3 month appointment for a fistulagram and angioplasty.  My rather robust vascular system seems intent on shutting my fistula down.  This is considered access failure - even though my fistula has been on vacation since my transplant last November.  And my last echo cardiogram showed a thickening of the left ventricle - all signs pointing to tying off my fistula at the 1 year mark.

Which leads to my question: What should we do with our access after transplant?

My surgeon says after one year tie it off.  Well, that freaks me out a little - if it is tied off, it can't be untied if/when my graft fails.  I certainly don't want to have to have a second fistula placed if that were the case.  Bill has had his fistula for almost 20 years (knock wood) there is no reason why mine can't last  - if I am proactive in getting it checked out and serviced as needed.

I hit the web for some research, and this is some of what I found:

Arteriovenous fistula after renal transplantation: utility, futility or threat? Nephrology Dialysis Transplantation 2006 21(2):254-257; doi:10.1093/ndt/gfi276

AV fistula closure reduces left ventricular volume and mass in renal transplant patients. Whether fistula closure will reduce the associated high cardiac morbidity and mortality is unknown. There are clearly insufficient data yet to promote systematic closure of AV fistulas in kidney transplant patients with stable renal function, unless symptoms are present. The balance might favour closure in selected asymptomatic patients, with a large AV fistula, a dilated left ventricle,a low probability of graft loss and a high risk of cardiac events. Randomized large-scale prospective studies are clearly needed and, potentially, will better define the protective role of fistula closure.

Effect of closure of the arteriovenous fistula on left ventricular dimensions in renal transplant patients Nephrol Dial Transplant (2001) 16: 368-372

Closure of the arteriovenous fistula in stable renal transplant patients results in a decrease in LVMi, due to a reduction in LVEDD. The change in LVMi is significantly related to the LVMi and LVEDD before fistula closing. In patients with a well-functioning allograft and persistent LV dilatation, closure of the AV fistula might be considered.

Arteriovenous fistula closure after renal transplantation: a prospective study with 24-hour ambulatory blood pressure monitoring.  Transplantation. 2008 Feb 15;85(3):482-5.

Because the increase in diastolic blood pressure after arteriovenous fistula closure occurred regardless of the preoperative level of diastolic pressure, we suggest that blood pressure should be monitored after fistula closure, particularly when preoperative diastolic blood pressure is borderline or elevated.

Cardiac impact of the arteriovenous fistula after kidney transplantation: a case-controlled, match-paired study (Transplant International, Volume 21, Number 10, October 2008 , pp. 948-954(7))

In kidney transplant (KT) recipients, cardiac impact of the persistence of an asymptomatic arteriovenous fistula (AVF) for hemodialysis has not been fully elucidated.

My final decision will be based upon the advice of my Surgeon. Dr. Benvenisty has been right beside me for my journey from pre dialysis through transplant, and he'll still be there if my graft should fail.  Access issues should always be at the forefront of thought for anyone living with CKD5 - without access, the disease wins.

Dialysis & CKD Blog Report 2/16

By Anna Bennett

It is my turn to do the blog report (no Scrabble losses involved).  Here are the CKD related blogs updated since Bill's last update on 2/12. If you have or know of a blog that should be on the list let Bill know. The parentheticals are my comments.

• Dialysis from the sharp end of the needle we welcome NxStage Road Warrior Harvey Wells to DSEN; Bill starts a dialogue on immunosuppressives and healthcare to treat the person, not just the disease; Bill suggests medicare financial incentives; the comments have been busy (keep 'em coming)
• Kamal Shah's Blog beware the "Healthy Alternative" (not so healthy); appreciating talent; Gatte ki sabzi (looks delicious); year round bananas are under appreciated.  (I am eating a banana with my oatmeal as I type this)
• Kaply, Inc. cell phone frustration; kitchen class part two; awaiting the arrival of Fathead (I hope that you have a great time)
• poetry on dialysis continued poetry for Valentines Day. Poems about about clotting, walking and dialysis.  From the Dialysis poem: "i have shut my eyes against the world and my blood is returning form a remote place where it has gathered some nameless, terrifying beauty." (Once again, Vidal has written something that makes me stop and say WOW)
• Stayin' alive a glucose monitoring tattoo (all the cool kids are getting them); an honest post about access to transplant. (Is there any way that you can switch to NxStage?  It has better outcomes than in center dialysis - you'll feel better and have more control over your life)
• Hasten down the wire the vulnerability of the Internet (I don't see it as "the sky is falling" I see us as a society that has become dependent on electronic communication and entertainment - what will be the effect if that is taken away?)
  
• The Life of a 20-Something With Lupus making the effort to stay fit even when dealing with a chronic disease
• Living Out Loud Menu plan Monday; book recommendation and life's bits and pieces
• Jack's Kidney Adventure a busy Valentines Day that ends with watching the Godfather
• Strnad Family Digest a 13 week transplant update, all's well, now back to work
• Life on dialysis ... and now life after my transplant! the busy life of a transplant advocate - (and it involves cookies!)
• Let us Consider One Another upcoming travel, and good dialysis
• On the Road to a Cure ways to stay informed with the Lupus Foundation of America
• Really, I'm as Old as I Feel? a six word love story for Valentine's Day (I wonder what my six word love story would be?)
• I Am. Are you? a basketball half time donate life appeal; ask the organ donor expert
• Transplant Alliance Billy Joel and Elton John are coming to Philadelphia
• Chronic Chick Talk updating window blinds
• Bud's Ramblings the things you see (but would rather not see) at the Mall
• Renal Fellow Network end of life decisions/palliative care (please cite your data when quoting mortality numbers)
• The Nephrology Blog Still in clinical trials - BUT A new drug called Avosentan may help to slow diabetic kidney disease; hypertensive kidney disease;combination drug therapy; a Happy Valentines day video clip
• Renal tsar's blog World Kidney Day - What are YOU planning? (Bill is going to LA to see Who Lives?); a very cool Monthly Update from the NHS Renal NSF (UK's Renal National Service Framework)
• Bondservant Diary looking forward to starting NxStage training; a DSEN cross post of Harvey's NxStage Adventure; Sheila's dialysis travel
• Waiting for a transplant a one year memorial; making friends and bonding because of kidney disease (a beautiful post as a testament that something good can come out of a terrible disease and a lovely picture)
• Stiiiiiiiiiiiiiiiiiill hoping fractional Birthdays; and Happy Valentines Day and President's Day
• Phoenix27 "Spend Valentine's Day with someone you like"  (My favorite quote of the day!  And roses are expensive and overrated)
• PKD Blog - Life with Polycystic Kidney Disease a  post for help with navigating the system when you don't have Insurance (a good resource - Thanks!)
• DailyHemo - Home Dialysis Advocates RIP Willem Kolff
• Biologically Safe Water Filters an AP article on Legionnaire’s bacteria found in Atlanta
• Kidney Community Emergency Response Links to a CellCept Warning Manditory Medication Guide (that woke me up!)
• Renal BizBlog Nurse Walks 9 Miles in Snow to Save Dialysis Patient (spoiler alert - she doesn't work for DaVita)
• Living with PKD bored; Facebook junkie

Is dialysis violent?

By Anna Bennett

I was speaking with a reporter on Wednesday, and she asked why people feel so terrible after a dialysis treatment.  I realized that she, like most of the population had no idea what dialysis actually entailed.  I forgot that I was talking to a dialysis layperson and I started talking dry weight, molecule removal and extended versus in center.  She was a bit taken aback when I described in center dialysis as violent, and I quickly explained the modalities using an analogy.

In center dialysis is like going to the gym for an intensive 3x a week workout - with no warm up or stretching.  This is sudden and shocking to your system, but better than no exercise at all.  After you leave the gym, your muscles are sore, you could be dehydrated, and the next day, you need a couple of Tylenol to recover.  Then you do the same routine again, and again.

At home daily and extended dialysis therapy is like going for a long daily walk.  Your stamina increases, your over all health is improved. It is gentle and causes less stress to your system.  It takes longer, but the benefits are long term. (ed: and you can do it in the company of your dog)

PD is like Pilates.  Your body does a lot of the work.  You use your core muscles (in the case of dialysis, your peritoneum). Done on a daily basis, it keeps you healthy and allows for a lot of flexibility.

Transplant is like having a built in personal trainer - not a magic bullet, you still have to follow a routine to stay healthy, but a transplant is a great renal replacement luxury.

So, the analogy of renal replacement therapy being like a workout is apt.  To explain our hidden life on dialysis we sometimes have to explain the modalities and the effects that they have on our bodies using analogies and in the most basic terms.  Hopefully, this pulled the curtain back and demystified the process for at least one person.  Only a few million more to go.

Depression: A co-morbidity that can be treated

By Anna Bennett

Living with CKD5 and trying to manage day to day can be overwhelming. Our healthcare system is stressed almost to the breaking point.  People need to be a partner in their own healthcare.  That is almost impossible if a person is suffering from depression. In November 2008, Renal Business Today ran an article about a paper presented at ASN '08 written by Ricardo Sesso, MD and his colleagues at the Federal University of Sao Paulo in Sao Paulo Brazil Therapy Helps Dialysis Patients Overcome Depression (excerpt):

The investigators found that after three months of intervention, the group receiving cognitive-behavioral therapy (ed. CBT) had a significant improvement in depressive symptoms, cognitive function, and quality-of-life scores when compared to the control group. These differences also persisted after six months of intervention.

During this period, patients received once a month maintenance sessions. The authors concluded that cognitive-behavioral therapy—a relatively cheap, harmless and practical intervention—is an effective strategy to treat depression in patients with kidney disease. “No other randomized trial using psychological or medical intervention with drugs has shown to be effective or has been published in this regard,” said Sesso.

All too often, chronic illness overshadows other conditions that affect quality of life. Depression can be just as debilitating.  Caretakers this means you too, your health is just as important as the person you love, they need you to be as healthy as possible.

Here is a reminder of the signs of major depression  - keeping in mind that these are also normal reactions to being on dialysis, but when they persist, seek help - it may make life better - it certainly can't hurt. 

Signs of depression from Mayoclinic.com:

• Loss of interest in normal daily activities
• Feeling sad or down
• Feeling hopeless
• Crying spells for no apparent reason
• Problems sleeping
• Trouble focusing or concentrating
• Difficulty making decisions
• Unintentional weight gain or loss
• Irritability
• Restlessness
• Being easily annoyed
• Feeling fatigued or weak
• Feeling worthless
• Loss of interest in sex
• Thoughts of suicide or suicidal behavior
• Unexplained physical problems, such as back pain or headaches

If your dialysis provider does not have the facilities to help you, look outside of the unit, call local mental health providers. If there are insurance or financial issues, explain your situation, and ask for a sliding scale.  If you live in a remote area, you may be able to get telephone support from another area.

In these economic times, there is no stigma with depression, our economy and our world is depressed. We can't make our kidneys work again, but let's make 2009 the year that we heal what we can, and depression can be healed.

NYC Says NO to Salt

By Anna Bennett

We at DSEN have been writing about salt and how salt has a negative affect on those with CKD - both in the hastening the onset of CKD5 and too much salt making dialysis inefficient. In an effort to promote better health (and lessen the burden on our underfunded over stressed public healthcare system) the city of New York has started a campaign to Cut the Salt. 

Although there is no mention of CKD, this is a step in the right direction to keep people off dialysis.

Americans’ salt intake has increased dramatically in recent decades. We now consume almost twice the recommended limit of salt each day – but not by choice. Nearly 80% of the salt in our diet is added to processed and prepared foods before we buy them. Reducing salt in food will lower blood pressure in people with hypertension. Salt reduction will also help prevent strokes, heart attacks, and other problems in people who don’t have clinical high blood pressure.

The initiative calls on food industry leaders to help develop, and then adhere to, sodium targets for all products, using categories such as breads, breakfast cereals and prepared entrees. The goal is to achieve substantial, gradual reductions in salt levels across a wide range of foods. Meeting salt reduction goals will require significant changes in food manufacturing practices, but the changes are feasible.

The website also contains some helpful links:

Their Health Bulletin with facts and helpful hints, including a page with the sodium content of popular foods - which is full of sobering numbers.  Like one tablespoon of ketchup is 8% of your daily sodium.  One canned biscuit (the kind you pop and bake) is 24% of your daily sodium.  This list blows my Beware Hidden Salt post out of the water, and just goes to show that salt is everywhere.

The New York Times picked up on this story with the article Throwing the Book at Salt and created a graphic of Where Salt Lurks.

This is all information that you can use to live a healthier and longer life.

Dialysis & CKD Blog Report 1/31

By Anna Bennett

After a brief but sweet winning streak in Scrabble, I am back to the Saturday Blog Report. These are the CKD related blogs updated since Bill's last report on 1/29. If you have or know of a blog that should be on the list let Bill know.

CKD Blogs Updated in the Last Month

• Kamal Shah's Blog demographics and terrorism on the Indian subcontinent
• Toastiest an annotated photographic history of fistula (wow)
• The Life of a 20-Something With LupusTGIF, dialysis alarms strike; studying hard (it is worth it)
• Becky Perry photographic memories of children growing up
• Jack's Kidney Adventure a grief anniversary; high Ph, low BP; frustrating health care providers
• On the Road to a Cure a grant to study Lupus Biomarkers with video
• Really, I'm as Old as I Feel? January thankfulness
• Transplant Alliance new web store
• Charlottesville Prejudice And Civil Rights Watch a Pete Seeger video (makes me smile); It is time to move (Home is where the heart is)
• Renal Fellow Network renal damage from lithotripsy (it can also damage the pancreas as well)
• Diario de diálisis Crónicas, reflexiones y sentimientos de un paciente que comenzó un tratamiento de diálisis (In Spanish)  Journal dialysis - Chronicles, thoughts and feelings of a patient who started a dialysis treatment (Google translated from Spanish) dialysis on vacation at the beach. (sigh, the picture is beautiful)
• Bondservant Diary a great post on salt and potassium
• pkdmom2five Taco Bell and a car show
• Lemonade and Kidneys Send mojitos and Demerol, and stay tuned (my favorite line of the week)
• Stiiiiiiiiiiiiiiiiiill hoping someone can spare a type A or type O kidney....fistula surgery over

Video Blog

• DailyHemo - Home Dialysis Advocates lots of videos

Beware hidden salt

By Anna Bennett

We hear it again and again - too much salt is bad for you. DSEN has a category of posts on CKD & Salt and Nancy Spaeth recently wrote a detailed comment about salt and the importance of sodium control.  That is the salt that we can see, the salt that we have control over - not putting the salt shaker on the table, cooking without salt.  BUT in today's over processed/fast food environment you may be ingesting salt without even realizing just how much. Moderating sodium in your diet means limiting yourself to about 1500 mg of salt per day.

photo by Craig Jackson

Salt has many names: Some of the sodium ingredients used in food processing include: salt, sodium, monosodium glutamate (MSG), baking powder, baking soda, disodium phosphate, sodium benzoate, sodium hydroxide, sodium nitrite, sodium propionate and sodium sulfite. All of these affect your body's fluid volume, your thirst level and your body's ability to be efficiently dialyzed - you won't be able to pull off enough fluid during a conventional incenter run if you have too much salt on board - too much sodium would make it mathematically impossible for a 3.5 hour 3x a week dialysis schedule to balance the fluid between your blood, your cells and your interstitium.  Your body would have to have fluid removed from its blood compartment faster than it could transfer fluid in from the interstitium. This fluid deficit in the blood compartment is what causes cramping and you won't even finish dialysis at your dry weight. Hours later your cells and interstitium would release their fluid surplus into your blood stream leaving you chronically fluid overloaded. It's a vicious cycle that can start to wind down once salt is brought under control. For more on the body's three fluid spaces see Bill's post Dr. Agar on fluid and solute removal.

Salt is a preservative, and in general the convenient, shelf stable food that you buy pre-made or pre-mixed from the grocery store has too much salt in it.  And I'm not even writing about processed meat - pretty much anything packed in plastic from your deli aisle - turkey slices, Bologna, hot dogs - these meats are treated with sodium and other preservatives to last longer on the shelf. When you are making yourself that Oscar Meyer shaved turkey sandwich (2oz = 460 mg salt) on Wonder Bread (2slices = 260mg), you are adding significantly to your salt consumption.  It may be a quick meal now, but it is shaving time off your life span - you're "saving time", so that you can die earlier. That doesn't make much sense.

Here is how salt can sneak up on you (from Hidden Sodium in food)

• Twizzlers Black Licorice Twists - four strands have 200 milligrams; four strands of Twizzlers Strawberry Licorice have 115 mg.
• Raisin-bran cereals - Kellogg’s has 350 mg per cup; Post, 300 mg; Total, 230 mg.
• Jell-O Instant Pudding & Pie Filling Mix - the chocolate flavor contains 420 mg per serving; lemon, 310 mg; chocolate fudge, 380 mg.
• Prego Heart Smart Traditional Italian Sauce - this has an American Heart Association logo on the label which means saturated fat and cholesterol are restricted, but not that it’s low in sodium. This sauce has 430 mg per half-cup.
• Aunt Jemima Original Pancake and Waffle Mix - prepared as directed, the pancakes have about 200 mg of sodium each.

More Salt Resources:

Top Ten ways to limit your salt intake

World Salt Awareness Week

Hidden Sodium in Supermarket Meats

DaVita sodium and chronic kidney disease

If you're on dialysis, moderate your salt intake. It makes dialysis less of a burden and health impact aside, eating fresh, home made food tastes much better.

Personal Health: Should we be looking backward?

By Anna Bennett

Bill forwarded me the government's Family Health Tree. 

From the news/press release:

The AP (1/13, Neergaard) reports, "A good family health history is far more important than a gene test in predicting" people's "future medical needs, but it's hugely underused." Therefore, starting today, "the government begins offering a free new service to try to change that -- helping people compile one at home, email it to relatives who can fill in the gaps, and even pop it straight into their doctors' computers." Genetics experts can use these family health trees to "look for patterns of inherited illnesses that can provide a powerful window on someone's brewing health risks." Data from the Centers for Disease Control and Prevention indicate that "fewer than 30 percent of Americans have ever collected health information from relatives to compile one."

After working with the program for an hour, here are my thoughts:  Our tax dollars paid for this.  At a time when there is an epidemic of obesity, diabetes, high blood pressure, inactive lifestyle, poor eating habits...  the list goes on.  We as a nation are not properly addressing our personal health.  I think that the family health tree has missed its mark.  It encourages people to stay on the internet and delve into past generations,  rather than get out of the chair and take a walk. We need to know what diseases are prevalent in our genetics, but it need not be a tax dollar funded undertaking.

I write this as a second generation PKD afflicted person in CKD5.  Knowing that my mother had PKD was enough, I have no need to trace back generations to see who's genetic mutation is to blame.  Science has brought us genetic testing (still controversial) and excellent diagnostic medicine. We don't need extensive genealogies replacing a proper medical history done by a trained physician.

The money spent on developing the Family Health Tree could have been an incentive to get phys ed back in schools.  Or fund grass roots community blood pressure/education clinics.  Because today's overweight child with type II diabetes sitting at home playing Nintendo is tomorrow's dialysis patient.  We need to save ourselves and our future generations. We know how we got to these epidemic proportions - now we need to fix it.

Dialysis & CKD Blog Report 1/10

By Anna Bennett

Here are the blogs updated since Bill's report on 1/7:

• Dialysis from the sharp end of the needle MEDPAC Meeting; Blog Reports
• Kamal Shah's Blog trucking strike affects home dialysis; in search of the perfect Rotia; when work and passion converge
• Kaply, Inc. answering questions, e.g. why she blogs, who to eat if there were a Donner party situation in Seattle
• As The Pump Turns has decided to stop blogging
• Jack's Kidney Adventure diet issues
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease 8 months post transplant and all is well, a very sick teenager
• The Life of a 20-Something With Lupus back to school, monthly clinic visit, a vist to her old dialysis unit
• Strnad Family Digest  homeschooling
• Life on dialysis: waiting for the call! transplant and waiting for a transplant stories
• Let us Consider One Another Neurological workup
• On the Road to a Cure webcast Living with Lupus
• Toastiest not a fan of Kate Hudson, disappointment with Obama's choices
• I Am. Are you? organ donation numbers
• PKD World a call for members - moving PKD Support - MSN is closing down the current site
• Life on Dialysis strikes in India, hassles with drunks to get a taxi
• Chronic Chick Talk dignity in health care
• Bud's Ramblings crazy weather; pictures of home
• Charlottesville Prejudice And Civil Rights Watch missing girl
• Precious Bodily Fluids 2008 in review by traffic/popularity
• Renal Fellow Network routine urinalysis; Hemojuvelin
• Bondservant Diary metric rant
• pkdmom2five bizarre Mexican kidnap scam
• Kidney Community Emergency Response CDC releases SNAPS demographic database
• Kidney Diet Tips about kidney diet
• My Wife has Lupus  holidays NOT in the hospital
• Chronicles of a PD Warrior  scandal in India

Deceased Donor: Kidney Allocation Policy

By Anna Bennett

The facts are clear.  There are not enough kidneys for those who want to be transplanted and the "List" is overinflated.  See Bill's post Waiting for a Transplant - eligible v. ineligible.

In the past few years, there have been inroads in dialysis (NxStage and HDHH) and inroads in transplantation.  New immunosurpressives are doing amazingly well with low antigen match kidneys.  OPTN/ UNOS are in the process of changing the current kidney allocation criteria.  Back in September, OPTN/UNOS issued a request to the community for input. 

Bill posted about this request in Measuring Dialysis to fairly allocate kidneys for transplant .  He wrote about his concern with regard to qualifying dialysis yet not differentiating between the superior outcomes of High Dose Home Hemodialysis v. standard in center hemodialysis.

The Renal Support Network has posted their response to the proposed OTPN/UNOS Kidney Allocation Policy.  

In the final paragraphs of RSN's response, they have a wise, reasonable request:

Thousands of lives will be affected. So we ask that OPTN/UNOS allow ongoing conversation and input prior to a decision, that a final process be more simplified and readily comprehendible than that which is currently proposed and that a pilot program be considered. This will help understand the impact and allow for changes if the new system needs adjusting.

Watching the development of redefining the allocation process is an amazing window into healthcare reform.

PKD Foundation Webinars: 1/6/09 8PM EST CKD Nutrition

Learn how to eat healthy with PKD in the second in a series of free webinars!

When: Tuesday, January 6 at 8pm ET (7pm/CT, 1am/GMT)
Where: From your home or office computer
How: Register Now!

Renal Dietitian, PKD patient, wife and mother, Kelly Welsh, will help walk you through what foods are good and those to avoid for someone with compromised kidney function. Following the presentation, there will be an opportunity for diet related questions and answers.

Did you miss the first webinar on the “Basics of PKD”?  Click here  to watch Dr. Ronald Perrone, Professor of Medicine, Tufts University School of Medicine and Chair of the PKD Foundation’s Scientific Advisory Committee present this educational, easy-to-understand webinar. 

Dialysis & CKD Blog Report for 1/3

By Anna Bennett

This is our first blog report for 2009.  Here are all of the blogs updated since Bill's last report on 12/31/2008.  The parentheticals are my comments.

• Dialysis from the sharp end of the needle Bill's annual Rose Bowl Parade posts (Congrats Donate Life on your prize); A first person account of transplant tourism
• Kamal Shah's Blog a series of posts about dialysis in India, a comparison of need, a call for organization and data collection and helpful guidelines for those with CKD (I feel like I am reading the beginning of change for dialysis in India.  Advocacy in an emergent nation, as the Indian economy grows, combined with local, educated, engaged advocates - CKD access and care can only get better)
• Kaply, Inc. a meme - ask Kaply anything! A NYE fire drill; Spider is alive and getting better
• As The Pump Turns learning from patients; family resemblance - 3 generations
• Drinking my way through Trader Joe's Wine NYE Sparkling Spanish wine gets 4 stars
• The Life of a 20-Something With Lupus looking forward to all things NEW - year, school, computer
• The Adventures of Stacy Without An E pondering 2008, not living the life he planned - feeling the pain and isolation of chronic illness
• Toastiest brain fog; shopping for a new car - influenced by late night television
• I Am. Are you?  a first person recap from the Rose Parade Donate Life Float
• Chronic Chick Talk chronic illness, coping and asking questions
• Dialyse This calls for a "make a wish" for grownups (hmm - what would I wish for???)
• Bud's Ramblings double chocolate, two Christmases, family keeps secrets
• Charlottesville Prejudice And Civil Rights Watch a comparison of local government spending on mental health
• Renal Fellow Network recapping landmark papers in Nephrology, MDRD I (calculating GFR) paper from 1994 NEJM
• Bondservant Diary Happy New Year; Soul in need of rest
• Kidney Notes - Exploring the Intersection of Medicine and Technology electronic stethoscope

Transplant Tourism Pakistan: A First Person Account

By Anna Bennett

UPDATE:  Jan 31, 2009  We have been contacted by the author of the blog quoted below.  As it is illegal in Pakistan, the United Kingdom and the United States to purchase organs for transplant, in a compromise we have removed the archive of the original blog (which the author (now referred to as Bambi) deleted) and have redacted anything identifying the author.

Bambi's Journey is a blog about desperation. Bambi was desperate for a kidney, the hospital in Pakistan was desperate for foreign cash, and the donor, was desperate for money to ease the family's struggle with poverty.In the latest entry in the blog, Bambi has a new kidney, the transplant hospital has been paid, and we presume that the donor has returned to their life, one less kidney and with some compensation.

This is amazing to read.  Neither Bill nor I have ever read a first person account of a compensated foreign kidney transplant.  It elicits some powerful responses. For me, a recent deceased donor transplant recipient, it gives an account of the transplant process in a third world country with the added dimension of secrecy. The hospital advises:

...you keep a low profile and not interact with anyone from the outside, even if it is family. REDACTED

Bambi writes about the matching process and on arrival in Pakistan, had to wait a few days for the hospital to find a match. (I was on the UNOS list for 3.5 years) According to the blog:

They [the hospital] have almost 500 donors on their books. All REDACTED with O+ blood group, since this is a universal blood type and anyone can receive an organ from this blood group.

Also there seems to be many little hidden additional costs. I will need to pay more $ for donors that they will need to test to find a perfect match. They charge $250 for each new donor that they cross-match after the first 2 cross-matches, until they find the right match. They conveniently forgot to mention this vital information.

Bambi secretly tipped the donor 70,000 Pakistan Rupees (US $888.21):

Since it was so difficult to talk or connect with the donor, everything had to be done secretly. I was able to quickly tell REDACTED that I wanted to give REDACTED a gift, and if I could have a phone number or something from REDACTED. REDACTED told me that they did not have an address. I felt very sad hearing this. Later that day I was passed on a cell phone number by one of the nicer nurses. REDACTED Also it was a good opportunity to take photo's REDACTED. I also took that opportunity while no-one was around to tell REDACTED also that we wanted to give them some money as our gift of thank you and that they must not leave without seeing us before they left.

REDACTED

In keeping with the comparison, as a token of thanks, I sent a letter (to maintain anonymity via UNOS/OPTN) to my donor's family. 

Foreign Transplants are a controversial subject, and are widely written about from a pundit and medical perspective. From 11/07 edition of Transplant international : Official Journal of the European Society for Organ Transplantation A socioeconomic survey of kidney vendors in Pakistan:

In recent years, Pakistan has emerged as one of the largest centres for commerce and tourism in renal transplantation. Kidney vendors belong to Punjab in eastern Pakistan, the agricultural heartland, where 34% people live below poverty line. We report results of a socioeconomic and health survey of 239 kidney vendors. The mean age was 33.6 +/- 7.2 years (M:F 3.5:1). Mean nephrectomy period was 4.8 +/- 2.3 years. Ninety per cent of the vendors were illiterate. Sixty-nine per cent were bonded labourers who were virtual slaves to landlords, labourers 12%, housewives 8.5% and unemployed 11%. Monthly income was $US15.4 +/- 8.9 with 2-11 dependents per family. Majority (93%), vended for debt repayment with mean debt of $1311.4 +/- 819. The mean agreed sale price was $1737 +/- 262. However, they received $1377 +/- 196 after deduction for hospital and travel expenses. Postvending 88% had no economic improvement in their lives and 98% reported deterioration in general health status. Future vending was encouraged by 35% to pay off debts and freedom from bondage. This study gives a snapshot of kidney vendors from Pakistan. These impoverished people, many in bondage, are examples of modern day slavery. They will remain exploited until law against bondage is implemented and new laws are introduced to ban commerce and transplant tourism in Pakistan.

Rarely do we get a first hand account.  I am sorry that Bambi reached such a level of desperation that Bambi was compelled to travel to an underprivileged country for a transplant.  I thank Bambi for sharing her experience.  It is a window into organ trade that is illuminating and thought provoking.