Dialysis from the sharp end of the needle

New location for Seattle area CKD meeting: Twin Lakes Golf and Country Club

By Bill Peckham

If you're in the Seattle area on August 29th plan to attend the Renal Support Network's 2010 Seattle Patient Lifestyle Meeting at its new location:

Twin Lakes Golf and Country Club
3583 320th Street
Federal Way, WA 98023

The PLM is free for you and a guest to attend; please RSVP as soon as possible by filling out the form ( PDF link) and fax it to: (818) 244-9540

The Key Note this year is Dr. Connie Davis a University of Washington professor of medicine,the director of kidney care and transplantation services at UW Medical Center and both co-director and medical director of the kidney and pancreas transplant program at UWMC. Dr. Davis is a great resource for anyone with CKD particularly if they're considering a transplant.

As always the agenda is subject to change:

Seattle Patient Lifestyle Meeting
Agenda

•  9:45      Registration, Brunch, Visit the Exhibits and Silent Auction 
                (to benefit RSN)

• 10:45     Welcome, Introduction and Door Prizes        
  
  • Bonnie Markuson, kidney patient
  • Sharon Pahlka, CLC, kidney patient

• 11:00     Keeping Fit with CKD and the Benefits of an Early 
               Transplant
  • Connie Davis, MD, UW Medical Center, Division of Transplantation

• 12:00     Spicing Up Your Renal Diet
  
  • Maya West, Renal Dietitian, Northwest Kidney Centers

• 1:00       Understanding Your treatment Options and Planning Your 
                Course
  
  • Sandra Glenn, RN, BA, CNN

• 1:30       Going Rogue and Other travels with Dialysis
  
  • Bill Peckham, kidney patient

• 2:45       How Do I Ask for a Kidney?
  
  • David LeFevre, Kidney Donor

All that and a tasty buffet. And did I mention it was free!  

AND THERE IS A SILENT AUCTION. Organizer Bonnie Markuson writes in:

I have received a number of very generously donated items from local businesses and friends for the auction, including

• Seahawks Tickets
• a Hydra-Facial
• a Massage
• Beauty Product Gift Baskets
• Toys
• Gourmet Food Baskets 
• and more.  

If you're interested in bidding but are unable to attend send Bonnie an email: bmarkuson@comcast.net for information and to bid! All proceeds go to support the Renal Support Network.

It'll be a great event and an opportunity to hear me speak about travel - most recently the trip with NxStage down the Rogue and the first NxStage Freedom cruise last January, but also my 15 years of foreign hemodialysis travel experience. And if there is time a little about bundling.

Come see Rogue rafting pictures and video at Seattle area CKD meeting August 29 - register now!

By Bill Peckham

If you're in the Seattle area on August 29th plan to attend the Renal Support Network's 2010 Seattle Patient Lifestyle Meeting. I'll be speaking about travel - most recently the trip with NxStage down the Rogue and the first NxStage Freedom cruise last January, but also my 15 years of foreign hemodialysis travel experience. And if there is time a little about bundling.

The PLM is free for you and a guest to attend, please RSVP by August 20th. You can RSVP in two ways:

• Fill out the form ( PDF link) and fax it to: (818) 244-9540
• Register online at RSNhope.org

And I'm not the only speaker!

The Key Note this year is Dr. Connie Davis a University of Washington professor of medicine,the director of kidney care and transplantation services at UW Medical Center and both co-director and medical director of the kidney and pancreas transplant program at UWMC. Dr. Davis is a great resource for anyone considering a transplant.

As always the agenda is subject to change:

Seattle Patient Lifestyle Meeting
Agenda

•  9:45      Registration, Brunch, Visit the Exhibits and Silent Auction (to benefit RSN)

• 10:45     Welcome, Introduction and Door Prizes       
  
  • Bonnie Markuson, kidney patient
  • Sharon Pahlka, CLC, kidney patient

• 11:00     Keeping Fit with CKD and the Benefits of an Early Transplant
  • Connie Davis, MD, UW Medical Center, Division of Transplantation

• 12:00     Spicing Up Your Renal Diet
  
  • Maya West, Renal Dietitian, Northwest Kidney Centers

• 1:00       Understanding Your treatment Options and Planning Your Course
  
  • Sandra Glenn, RN, BA, CNN

• 1:30       Going Rogue and Other travels with Dialysis
  
  • Bill Peckham, kidney patient

• 2:45       How Do I Ask for a Kidney?
  
  • David LeFevre, Kidney Donor

All that and a tasty buffet. And did I mention it was free!

Seattle area CKD meeting October 17 - register now - it's FREE

By Bill Peckham

We're having a meeting here in Seattle on October 17 (PDF file). This is a Renal Support Network (RSN) Patient Lifestyle Meeting (PLM):

For the past several years, RSN has hosted free patient lifestyle meetings across United States, attended by people with chronic kidney disease (CKD) and their family members.

At these meetings, healthcare professionals and renal patients—on dialysis or with a kidney transplant—speak on life-enhancement and illness-related issues relevant to living a fulfilling life despite renal disease.

Any illness—and particularly CKD—is too demanding when you don’t have hope. If people with CKD do not believe they have a future, then the demands placed upon them by dialysis or by the immunosuppressant regimen will prove overwhelming. The goal of the patient lifestyle meeting series is to let patients know that their kidney problems are just that... problems that can be overcome with hope, an eye toward the future, a working knowledge of their disease, and a touch of common sense.

Patients are treated to a renal-friendly lunch or brunch and refreshments, and raffle prizes will be given away throughout the day. During the scheduled breaks, attendees are encouraged to visit information stations located throughout the venue where they can speak with experts on topics such as cooking renal-friendly foods, making traveling easier, re-entering the workforce, taking charge of one’s own health, and honing one’s skills as a caregiver.

Space is limited so you need to preregister to attend. Go online to preregister or print, fill out and fax the form (click image for larger version) to (818) 244-9540.

The agenda features Dr. Chris Blagg, emeritus director of the Northwest Kidney Centers who will speak about the journey chronic kidney disease has made from the first dialysis treatment nearly 50 years ago in Seattle through the challenges and opportunities of today. Dr. Blagg presents the history of CKD to conferences throughout the world and has been recognized for promoting home dialysis, as well as for developing public policy for renal disease treatment and kidney transplantation.

As always the agenda is subject to change:

Seattle Patient Lifestyle Meeting
Agenda

• 10:00       Registration, Brunch, Visit the Exhibits

• 11:00       Introduction, RSN Overview       
  
  • Sharon Pahlka, CLC, kidney patient
  • Bill Peckham, kidney patient dialyzor and blogger

• 11:15       History of CKD and Seattle 
  • Chris Blagg, MD

• 12:15       Home Dialysis:  There’s no Place Like Home
  • Sandra Glenn, RN, BA, CNN

• 12:45       Make Yourself a Perfect 10
  • Sharon Pahlka, CLC, kidney patient

• 1:30        Break, Raffle, Visit with Exhibitors

• 1:45        Importance of Blood Pressure
  • Leanna B. Tyshler, MD

• 2:30        Self Care – Cannulation
  • Lynda Ball, MSN, RN, CNN

• 3:00        The Transplant Experience
  • George Murray

• 3:30        Latest Issues in Health Care Reform
  
  • Bill Peckham, DSEN

• 3:45          Raffle, Evaluations, Adjourn

It will be a fun and informative meeting, be sure to REGISTER BY OCTOBER 9TH!

You can bet we'd love to have your volunteer help if you're interested in staffing registration or other day of event jobs. On your registration form indicate your willingness to volunteer or drop me an email/write a comment. I hope to see you there.

Kidney Talk features upbeat transplant story told through the eyes of a Mom

By Bill Peckham

Karol Franks, friend of DSEN and IHD owner/administrator/moderator/stalwart (Okarol) is this weeks guest on KidneyTalk, A Mother's Journey to Find Her Daughter a Kidney:

When Karol Franks found out her 14 year old daughter, Jenna, was diagnosed with kidney disease, it began a three year journey to search for the gift of life. Listen to Karol’s heartwarming story about searching for solutions and how she and her daughter found hope through the kindness of a stranger.

I know Karol and Jenna's story but this is a great narrative of the journey. Hearing the emotion in Karol's voice conveys her experience being a Mother with a sick child.

Lori and Karol talking transplant makes for a very informative podcast. Jenna's very successful transplant via an altruistic donor that found the Franks through the internet is one end of a continuum of transplant outcomes and is the central thread of the interview but Lori and Karol do discuss the less good outcomes. Karol was a Mom on a mission before and after the transplant. I think Karol once called me out of the blue to ask fistula questions - my memory is fuzzy - but it's clear she is not someone who is ever deterred.

It's a great KidneyTalk. Check it out.

Talking dialysis reimbursement in LA

By Bill Peckham

Mark Neumann has a post up over at NephrOnline Confused about the ESRD bundle? Ask a patient who knows. It's a shout out to the group of dialyzors (Come on Mark. Try it. Dialyzor) and other individuals living with CKD themselves or in those they love, who got together for two days to talk dialysis reimbursement and the looming expansion of the dialysis payment bundle. The Renal Support Network (RSN) brought everyone together and laid out the structure for the discussion. As Mark says it was in an LA hotel meeting room but think corporate brainstorming session not industry presentation.

Lori, the founder and driving force behind RSN, does a good job getting people involved in the discussion. The whole thing is hugely complicated and at this point we don't know what exactly will be in the proposed rule. I can say that I think the people around the table now have the context to understand the impact of rule language once it is announced.

DSEN contributor Harvey Wells was there and dialyzed during the morning session, while at the morning session. Harvey dialyzed while he participated (once again doing something else before me). There is no doubt that those in the room know the power of self dialysis and feel a passion about reimbursement supporting optimal dialysis. Peter was there too so he can give his own thoughts but I think he liked what he found - we can have a very productive discussion even if we don't all share the same political philosophy.

Celebrate National Donate Life Month with Transplant Man

By Bill Peckham

April is the 6th National Donate Life Month. Checkout the Renal Support Network's Donate Life Month page for links to up to date transplant information and while you're there checkout the Operation Transplant Man game. (h/t IHD's Okarol)

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.

Who Lives - gets the job done. The surprise of the evening is in the lobby before hand

By Bill Peckham

photo by Karol Franks

The big surprise was that Anna flew in for the Who Lives premier too. At 6PM my Mom and I met a group across from the theater for dinner. After eating we walked over to the theater and there was Anna standing in the Lobby with a smirk on her face. If you are member of IHD you can see pictures of the event including this one of the first moments after I realize that Anna is at the theater (and it includes my Mom to the right).

At dinner it was Lori Hartwell the President of the Renal Support Network and Executive Producer of Who Lives, Karol from IHD, Sharon a friend from Seattle and RSN stalwart who had also flown down, Bonnie also from the Seattle area and Bonnie's sister. Bonnie went through the committee in 1967 so it was special to have her at the premier of the play. I have to say she looks great and is a living tribute to the work the committee accomplished.

This gets to my complaint about the play – it didn't portray the actual events. The author created his dramatic tension without illustrating the historic dynamics. Listening to the actual participants tell their stories over the years the thing that has always struck me was how collaborative the whole enterprise was, the doctors, nurses, staff, the community and at the center of it all the patients, who were full and engaged collaborators. In those early days everyone worked as a team to figure out how to make this new life sustaining treatment work. Even people from outside the kidney specialty made significant contributions to the field.

My Mom liked the performance as a play and I think Anna can review the production as a dramatic performance once she returns to NY on Sunday. The acting was good, the set was interesting – everything was in black and white except one character used a red cloth at various moments and I'm not sure what that symbolized. I did notice that the Seattle skyline at the back of the set was circa late '80s. The play does do the job of getting people to talk about the issues involved and about kidney disease. After the performance my Mom and I spent the rest of the evening discussing the story so in that respect I think the play got the job done.

There is a great story to tell about what happened in Seattle from 1960 to when the committee was disbanded in about 1968, Who Lives tells a different story. It takes some of the technical elements of the historic record but in many ways the play had one foot in the '90s and another foot in '60s which created some odd dissonance. When did people develop a sense of medical entitlement? When did people develop an expectation that medicine could cure them no matter what the disease? The play's drama relies on this attitude, yet I think that is a recent development and was not part of the '60s mind set.

Go see the play and have a nice evening enjoying a well produced and preformed production. And then check out the Nephrology Oral History Project  or Sharron's article for the real story.

New HOPEline flyer available

By Bill Peckham

The Renal Support Network runs a national phone support service so that anyone in the country who is dealing with CKD can know that support is a phone call away:

The HOPEline offers experience, strength and hope from one person who has lived successfully with chronic kidney disease to another. The toll-free line (800) 579-1970 is available Monday - Friday from 10 am to 8 pm (Pacific Standard Time).

There is now a flier available as a PDF file that you can download and print at home. Then share it with your local nephrologist's office, dialysis or transplant center.

If you need a bit of hope, give them a call; if you want to help others put up a flier.

A Play for World Kidney Day

By Bill Peckham

This World Kidney Day, March 12^th (always the second Thursday of March), I'm going to be in LA for the World Premier of Who Lives? a play by Christopher Meeks. The Renal Support Network is producing Who Lives? which is opening at the Pico Playhouse and will run from March 12 - 29. I think many of the cast members have CKD or have a connection to CKD and of course RSN is a nonprofit, patient-focused, patient-run organization. The play is a great vehicle to mark WKD and raise awareness of CKD, dialysis and transplantation. If you'll be in the LA area come join me at the Premier or get tickets to one of the other performances during the three week run.

Alport Syndrome chat tonight, 6PM Pacific

By Bill Peckham

Kidney Space, the Renal Support Network discussion board, is having a live chat tonight January 20th. The discussion will concern Alports Syndrome. You'll need to be registered as a member of the Kidney Space discussion board and then, while logged in, launch the flash chat. The chat will start at 6:00 PM PT (in Seattle, 7:00 PM MT, 8:00 PM CT, 9:00 PM ET or 2:00 AM Greenwich mean time).

The Internet allows real time communication in a number of ways. Chat is a way for a lot of people to join in a conversation. It can be a little confusing because more than one conversation might be going at once but give it a few minutes and you'll get in the rhythm. Sign up and join the Kidney Space community.

Seattle August 17th Renal Support Network Patient Lifestyle Meeting Agenda

The current agenda for the Renal Support Network Patient Lifestyle meeting features 2006 Haviland Award winner Dr. Suhail Ahmad, who literally wrote the book when it comes to dialysis and Dr. Jonathan Himmelfarb who has just arrived in Seattle to head the new Kidney Research Institute. The meeting is Sunday August 17th.

Seattle Patient Lifestyle Meeting
Agenda

• 10:00        Registration, Brunch, Visit the Exhibits

• 11:00        Introduction, RSN Overview       
  
  • Sharon Pahlka, CLC, kidney patient
  • Bill Peckham, kidney patient dialyzor

• 11:15        Protecting Your Kidneys - Living Longer and Healthier
                  in the Face of Kidney Disease
  • Suhail Ahmad, MD

• 12:15        Home Dialysis: Back to the Future
  • Sandra Glenn, RN, BA, CNN

• 12:45        Kidney Survivor: Lessons Learned from Experience
  • Sharon Pahlka, CLC, kidney patient

• 1:30          Break, Raffle

• 1:45          Kidney Research—Today and Tomorrow
  • Jonathan Himmelfarb, MD

• 2:30          Disaster Preparedness
  • Sharon A. Badger, RN
  • Aaron Herold, LICSW

• 3:00          Living Well and Long—Patient Panel
  • Moderator: Sharon Pahlka, CLC, kidney patient

• 3:45          Raffle, Evaluations, Adjourn

It will be a fun and informative meeting, be sure to REGISTER BY AUG 8!

Registration online is quick and simple (or download the PLM_Seattle_Flyer.pdf). We'd love to have your volunteer help if you're interested in staffing registration or other day of event jobs. On your registration form indicate your willingness to volunteer or drop me an email or write a comment. I hope to see you there.

 

A Seattle area meeting for those with CKD

We're having a meeting here in Seattle on August 17th (download PLM_Seattle_Flyer.pdf). This is a Renal Support Network (RSN) Patient Lifestyle Meeting (PLM):

For the past several years, RSN has hosted free patient lifestyle meetings across United States, attended by people with chronic kidney disease (CKD) and their family members.

At these meetings, healthcare professionals and renal patients—on dialysis or with a kidney transplant—speak on life-enhancement and illness-related issues relevant to living a fulfilling life despite renal disease.

Any illness—and particularly CKD—is too demanding when you don’t have hope. If people with CKD do not believe they have a future, then the demands placed upon them by dialysis or by the immunosuppressant regimen will prove overwhelming. The goal of the patient lifestyle meeting series is to let patients know that their kidney problems are just that... problems that can be overcome with hope, an eye toward the future, a working knowledge of their disease, and a touch of common sense.

Patients are treated to a renal-friendly lunch or brunch and refreshments, and raffle prizes will be given away throughout the day. During the scheduled breaks, attendees are encouraged to visit information stations located throughout the venue where they can speak with experts on topics such as cooking renal-friendly foods, making traveling easier, re-entering the workforce, taking charge of one’s own health, and honing one’s skills as a caregiver.

Representatives from companies and associations involved in renal care will provide updates on the latest equipment, pharmaceuticals, and patient resources.

I've been involved in a number of education efforts over the years. This is my first time helping with an RSN PLM. Sharon Pahlka has done the lion's share of the organizing, she's a PEPP speaker and will be giving one of the presentations at the event. I'll go over the meeting agenda in my next post - download the flier or click and print the picture for registration information and be sure to REGISTER BY AUG 8!

Registration online is quick and simple. We'd love to have your volunteer help if you're interested in staffing registration or other day of event jobs. On your registration form indicate your willingness to volunteer or drop me an email or comment. I hope to see you there.

Watch the cravings to stay in control of your health

Maria Karalis, the Renal Support Network's go to renal dietitian has an new article up on Kidney Times Why We Crave Comfort Foods? She offers sound advice on how to accommodate food cravings.

Pets are good for everyone

Kathe LeBeau, Program Manager for RSN’s weKAN program, has a new article up on Kidney Times Pet Therapy: Wagging Tails Come to You. We just heard Kathe on April 29th Kidney Talk when she talked about her creation Kismet the Clown. Now I'm thinking about Kismet and a big happy golden retriever barging into my hospital room ... it brings a smile to my face just thinking about it. I am very pro-dog, kinda neutral when it comes to clowns but a clown accompanied by a dog would always be welcome - in my home or in my hospital room.

Sometimes things work the way they're suppose to

Kidney Times has an article from IHD moderator Karol Franks (aka Okarol) relating her daughter's transplant experience The Miracle Continues. It is an amazing story about a truly altruistic donation.

How would you spend $100,000 for maximum renal community impact?

The Renal Support Network's 2008 Essay Contest theme is "Funding a Dream: Giving Back" (PDF flier). The premise is you have $100,000 to spend in a way that will most inspire or help fellow kidney patients ... now describe your idea in 750 words or less. Do it well and you'll win cash money: $500 for first place. No word on whether your idea will be funded.

2008 LA Renal Teen Prom

The Renal Support Network has posted this nearly 10 minute video of this year's Los Angeles Renal Teen Prom:

This was the ninth Renal Teen Prom in LA, last month RSN hosted the first East Coast Renal Teen Prom in the Washington DC area.

KidneyTimes article dialysis dose overview

Brenda Kurnik, MD has an article up on KidneyTimes I Want More Dialysis...Please! that is a response to people asking for more dialysis, more than three times a week and/or more than 4 hours a treatment, more than what is typically offered incenter. Dr. Kurnik gives a neutral overview of the situation, giving this history without much comment:

The transition from the long thrice weekly schedule to the current schedule was probably a product of several factors.  With the advent of the 1973 Medicare coverage of dialysis there was a proliferation of free standing dialysis units and for-profit dialysis companies.  The population changed to include older patients and those with diabetes mellitus as well as other medical conditions. Dialysis times were reduced in order to accommodate three and sometimes four shifts of patients per day with a thrice weekly schedule.  High flux/more efficient dialyzers became available and the result was to reduce dialysis time in order to treat more patients in shorter treatments. The patients preferred this also, since it optimized convenience though not necessarily health.

I think a fuller accounting of this period is needed. Dialysis times were cut in persuit of economic efficiencies. There were fine words said about how high flux artificial kidneys would keep the clinical outcomes stable but in fact outcomes deteriorated. Who owned the clinics? Who decided that two hours of dialysis could ever be enough? A lot of money was taken out of the dialysis care system in the 1980s and 1990s; dialyzors are still paying the price for their greed.

Whatever the history I think Peter is right when he says it is his peers, the doctors who prescribe the dose of dialysis; our doctors must put an end to modality neutrality.

Send flowers to Mom, support the RSN Renal Teen Prom

The Renal Support Network Renal Teen Prom will benefit from every bunch of flowers sent on Mother's Day thorough this 1-800-FLOWERS link (or click the image below).

On May 10th, the day before Mother's Day RSN will host their first Renal Teen Prom on the East Coast at DeMatha High School in Hyattsville, Maryland.

The making of the RSN bundling video

A lot of work went into making the video that the Renal Support Network produced. All the credit goes to Lori Hartwell who brought everyone together - first in Washington DC for a two day in depth meeting on the proposal to expand the dialysis composite reimbursement bundle (this is the overview from that meeting (PDF link); many of the commenters were in the video) and then in LA to shoot the video. Each person in the video was in talking for 30 or more minutes - it was Lori who made the editing decisions and massaged hours of raw footage into a compelling and fast moving six and a half minutes. Great job Lori! A woman of many talents.

The Renal Support Network page on expanding the bundle is here, it includes links to a couple if the background documents. RSN is a great group to connect with if you're on the sharp end of the needle or in other stages of CKD, and want to get involved in improving the provision of dialysis. RSN has a number of programs; the key advocacy program is weKAN. Check it out.

KidneyTalk for the week of April 29th

This week it's Kathe LeBeau who is Program Manager for RSN’s weKAN program. The show starts with some YouTube discussion - here's the Seymour Jones video from the Renal Support Network and the Hawaiian Chair video Lori commends (it is pretty funny).

This is a good show - Kathe relates her CKD story from start to her involvement with RSN and weKAN to a future as Kismet the Kidney Clown.

Video from RSN presenting the concerns about expanding the dialysis bundle

This video from the Renal Support Network is good and not just because I appear three times (is it just me or does my lighting seem off?). I've written plenty on expanding the dialysis bundle aka the ESRD composite rate - thousands of words - I think this video covers the ground better in six and a half minutes than I did in all those posts:

I really like the end with the call to imagine an ideal system rather accepting the current way dialysis is provided along with the 23% mortality rate. Rather than trying to figure out how to provide adequate dialysis for a little less money, let's try to create a system of care that can routinely provide optimal dialysis and CKD care. Nice job RSN.

RSN Takes the Renal Teen Prom to Washington, D.C.

The Renal Support Network has had a renal Teen Prom in the LA area for nine years. On May 10th they will host their first Renal Teen Prom on the East Coast:

The East Coast Renal Teen Prom will be held at DeMatha High School in Hyattsville, Maryland, about fifteen minutes by car from Capitol Hill. The event, themed “Dancing Under the Stars,” is for teens ages 14 to 24 who have chronic kidney disease and a guest of their choice. The prom attendees will be treated to dancing and limo rides, dinner and appetizers, glamour photos and a DJ. Some transportation will be available with volunteer drivers from the area. ...
For further information and to receive an invitation, contact RSN at www.RSNhope.org or toll-free (866) 903-1728. 

This is a great event if you live in the area or can get to Washington for next weekends' prom.

Managing prescriptions to avoid medication errors

Kidney Times has a thorough look a how to avoid medication errors. Medication Reconciliation: A Practical Guide For Dialysis and Transplant Patients by By Matt Schonder, RPh, MBA, and Kristine S. Schonder, PharmD- two pharmacy experts - gives an overview of what hospitals and pharmacists are doing to prevent errors but when all is said an done the authors suggest you make tracking your own prescriptions a top priority. Unfortunately this is not a one time thing since medications change this requires on going effort but it is a job we have to do.

George Harper - the protodialyzor

George Harper has an article over at Kidney Times (though because it has a ikidney URL it makes me think it was initially published some time ago). If you don't know who George is you need to check out the article. George took his machine with him before they were transportable.

Although I don't know how he refers to himself I think of him as the protodialyzor. He blazed a path of proactive engagement with the system while not allowing himself to fall into the standard  job description of patient. While I was still sorting out how to accommodate incenter dialysis George was busy loading his standard machine into his RV. George has gotten laws written and in 2002 he founded the Georgia Association of Kidney Patients - the dialyzors in Georgia have better care today because of George Harper.

Of course where George and I disagree is on the need for a helper to do home hemodialysis but I think George wrote this back in the day; he may now have a revised, updated point of view.

PEPP meeting update

The verdict is in - it'll be a slow blogging period while I am in LA at the PEPP training meeting. This is a very interactive meeting  - no opportunity to quietly live blog in the corner. I'm not entirely prepared for this meeting because it was just in the last couple weeks that I decided to come down here to participate and shoot some video for RSN. While I was here I was able to shoot some video to announce my intention to run for a political position. What position? - you'll have to wait for the video.

PEPP speakers

The Renal Support Network offers a great program - Patients Educating Patients and Professionals. This year's PEPP training program starts today (PDF link). I'm flying down for a day and a half Wednesday morning, back Thursday. Light blogging possible or I may try live blogging from the meeting.

New article up on KidneyTimes for National Donate Life month

KidneyTimes kicks off Donate Life Month with an article from kidney recipient M. Jill McMaster, MA, CAPT, USNR (Ret) Understanding the Process and Participating in Your Own Healthcare is Key to a Successful Kidney Transplant. National
 

New KidneyTalk for National Doante Life Month

A great new KidneyTalk for National Donate Life Month. Lori and Stephen talk to Rabbi Andrew Bossov and Reverend Karen Onesti - the Reverend gives the Rabbi a kidney.