Dialysis from the sharp end of the needle

DSEN contributor Dr. Peter Laird on KidneyTalk

By Bill Peckham

Peter is the subject of the most recent KidneyTalk, Trading Places - What Happens When a Doctor Becomes the Patient? It's a great interview. Peter goes through his whole story from first finding out that his kidneys were compromised through to his transition to home and more frequent dialysis on the NxStage System One.

Readers of DSEN know that as a doctor and dialyzor Peter brings a unique point of view to the complex subject of dialysis and how it is provided in the US. Checkout this week's KidneyTalk and join the conversation with Peter on the Renal Support Network's discussion board KidneySpace.

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.

Wise talk from Harvey

By Bill Peckham

KidneyTalk has a new podcast up, Across the Country - Dialysis Style with Harvey Wells (DSEN contributor). The whole program is good and I really liked the bit on self cannulation starting at the 22:50 mark. It can not be over stated: if at all possible put in your own needles.

KidneyTalk explains the significance of the dialysis bundle & CMS's rule making process

By Bill Peckham

A new KidneyTalk is up with Lori Hartwell and Mike Paget talking about the pending change to the way Medicare reimburses for dialysis. This KidneyTalk gives a good overview of the history of Medicare reimbursement for dialysis and the process that will unfold over the next few months. While reading the dialysis bundling Q&A, listen to the podcast:

Congress passed legislation last year that will require CMS to write the rules on the payment policy for dialysis services. Mike Paget, who has many years experience in the dialysis community will explain how the renal community can be sure to be involved in the process. Any day now CMS will publish a "proposed rule" on the new payment policy for dialysis care, in the Federal Register. The community will have 60 days to comment, after which CMS will review the comments to establish the final rule. Listen to the show and learn how you an make an impact and what some of the key issues are.

It's a good show. There is a lot to cover. At the 6:30 minute mark Lori gets into the meat of the process by asking how Centers for Medicare & Medicaid Services (CMS) and Congress interact. Mike outlines the point of interaction: the comment period after the rule change has been published in the Federal Register.

At the 15:40 Lori outlines the changes around how quality measures are used. These changes are meant to create incentives for quality care by threatening to deduct 2% from payments. An important question for CMS to decide is what has to happen for 2% of reimbursement to be withheld? There are about 6 quality measures. The rule making will establish the quality targets and the repercussions for not meeting the targets. Mike and Lori do a good job explaining the process and putting CMS's pending action in the context of legislation, HR 6331, the Medicare Improvements for Patients and Providers Act (MIPPA) of 2008.

The MIPPA legislation is the framework that will guide CMS through their process of crafting rules to implement the legislation. You can scroll through the whole MIPPA, or just check out the tiny bit that directly impacts the provision of dialysis: Section 152 and Section 153. The legislation left these key issues for CMS to sort out through its rule making process:

• Unit of payment: Will the bundle be per treatment, per week, or per month of services? Most in the renal community would prefer payment to be made per treatment.
• Scope of services: Exactly which lab tests, drugs, and other services will be included in the bundle? This is not yet clear, but will be included in the Proposed Rule from Medicare expected this summer.
• Home training: Training is a resource-intensive, one-time patient course. Home dialysis supporters want training payment to stay outside of the bundle. If included in the bundle, there is a risk that clinics will not want to go to the expense of training patients and caregivers to go home with their dialysis.
• More-frequent dialysis: Will Medicare continue to let providers be paid for treatments beyond three per week? Current Medicare policy allows extra treatments to be paid for when there is a medical reason. It is unclear whether this will still be the case under the new bundle.
• Home treatments: Congress passed a law that requires Medicare to encourage home dialysis. It is vital that when they create a new bundle, they don't accidentally make it harder for clinics to offer home treatments or for people to choose them.

Mike makes the point that these structural changes to reimbursement do not come along very often, it's been 26 years. This is going to be a one time opportunity to advocate for reimbursement that supports the care you want. There are choices that have to be made, if we get up to speed on the process and the issues, we can help CMS make the right choices.

Kidney Talk for the week of July 22nd with Saley Traore

23 year old Saley Traore tells her story which starts at age 13 when she makes a move from Guinea to the United States in 1997. In 2000 when focused on getting on the school soccer team she went to her doctor to get clearance to play. Instead of starting the season she had to start dialysis.

Her current optimism comes through loud and clear but it wasn't always so as she relates the struggles she faced while on dialysis and in High School.

Focus on peritoneal dialysis

This week's Kidney Talk with Sherai Onibasa is a good one. Sherai is the sort of remarkable person you meet when you get involved with RSN. In this Kidney Talk Sherai gives the insider's view of PD and shares some her interesting back story (including a travel tale). I probably don't give PD its due - there isn't an agenda at work, I just don't know much about it. It's good to keep this very work compatible form of treatment in mind when we think about dialysis.

KidneyTalk for the week of June 24th

A July Fourth edition of Kidney Talk with a former service member who stepped up to donate a kidney when he heard about a specific need. The program has both the donor and recipient talking about their experience; Daniel was on dialysis for 2 years before being transplanted.

KidneyTalk for the week of June 10th

This week's Kidney Talk is with renal dietitian Gaynell Irving. It's a good Kidney Talk but it should include a qualifier - there does not have to be a renal diet. There is a diet that one must use in conjunction with a minimum dose of dialysis, however, if you dialyze more frequently the dietary restrictions are significantly less.

Mark Neumann is this week's guest on KidneyTalk

This week's KidneyTalk is Mark Neumann the Executive Editor of Nephrology News & Issues - the most readable renal industry magazine. NN&I focuses on the business side of the provision of dialysis but they do publish pieces from the point of view of the sharp end of the needle. In fact, Mark published the first article I ever wrote for a magazine - a piece about my 1996 two month, seven country visit to Europe.

It's a good KidneyTalk. I've been a subscriber to the print magazine since that first article and their NephrOnline website is on my daily read list (the movie Stephen references is Path of Destruction).

Dr. Roberto Vargas this week on KidneyTalk

KidenyTalk for the week of May 13th is with Dr. Roberto Vargas, a General Internist who specializes in CKD. This is a good KidneyTalk about a tough subject. As Dr. Vargas says, by the time you exhibit symptoms of kidney disease a window of opportunity has passed. And while 70% of those with CKD have an obvious risk factor of diabetes or high blood pressure 30% have kidney disease for some other reason. Identifying that 30% without symptoms is a tough nut to crack.

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.

Kidney School is on Kidney Talk

Dori Schatell is on KidneyTalk discussing KidneySchool this week. As far as I'm concerned you can't give Dori too much airtime. She was able to get in a lot of information about Kidney School and about the inadequacies of three day a week dialysis. Hopefully Lori and Stephen will have her on again.

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.

KidneyTalk for the week of March 13th

The Offers, Daniel, Marjorie and Susan, talk about a book they wrote as a family: Dialysis without fear (Amazon, Barns & Noble). This KidneyTalk episode does give you a feel for the family, for instance we learn that they don't share Stephen's sense of humor but KidneyTalk didn't dive very far into the book. Going to one of the book seller sites will gives you the opportunity to read the publisher's review:

Drawing on his long medical career and more than seven years of personal experience with dialysis, Dr. Offer dispels many misconceptions surrounding this treatment, explaining how you can adapt to the new diet, travel, work and continue to partake in life's joys and celebrations. But the fears and hardships can be quite real, and Dr. Offer brings his years as a psychiatrist to bear as he provides practical advice on how patients can overcome them. Walking through each step of dialysis, he explains different types of treatment, examines the pros and cons of a transplant, and discusses side effects. Since dialysis affects the entire family, Dr. Offer and his coauthors also provide realistic insights into how relatives can cope and thrive together, sharing the humor, courage, and triumphs of real families who have successfully faced the challenges of dialysis. The result is an inspiring, practical guide that will help you and your family learn to overcome the difficulties of dialysis, live without fear, and enjoy every day.

I didn't realize he was a psychiatrist - it helps to explain their analytical, self aware approach to dialyzing. And on Amazon.com you can browse the three reader reviews or check out the review by Diabetes Health magazine.

As someone who has his own experience with dialysis I can quibble with some of the authors' framework but the book does provide a perspective I can't - that of the dialyzor's circle of support.

KidneyTalk: the movie

I've been on KidneyTalk a couple of times (here, here) but for those yet to be a guest here is a chance for you to see behind the scenes.

The first KidneyTalk of March: are transplants that good?

There is a new KidneyTalk up. They're talking to Stephen Furst's transplant surgeon Dr. Woodle, who is also a liver transplant recipient. You'd want your transplant surgeon to be highly in favor of transplant but I have to point out that I think he is making a flawed point about the relative risks of dialysis v. transplant. He compares the program wide annual mortality rate of dialysis with the expected mortality outcome for a transplant - saying it's something like 24% v. 2% - that's not exactly wrong but it is not very informative either.

Most transplant recipients are relitively healthy (on the CKD5 continuum) and would have a better prognosis on dialysis than Dr. Woodle credits. In my case - youngish, no comorbidities - my expected mortality on conventional dialysis is around 10%. There is limited data but it looks as if my expected mortality on short daily hemodialysis would be in the 5 to 7% range and on daily nocturnal home hemo (NHHD) in the 2 to 3% range. Even if the raw projected mortality rate is higher for NHHD, I think I can make the case that NHHD RIVALS a transplant.

Both a transplant and any form of dialysis has a range of outcomes. If you graph the outcomes of a transplant - longevity along the x axis of 1,000 people you'd see the normal distribution - the classic bell shaped curve. The center of the curve is the Mean, and the tails would extend from 0 on one side to 30+ years. In general it would be a pretty flat bell - in other words there is a wide range of outcomes.

If you graph the outcomes of NHHD - longevity along the x axis of 1,000 people you'd again see the standard distribution but it would be a different shape. The NHHD curve would be pointier (the tails would still extend to both limits). The Mean, the center of the curve would be, I think, slightly to the left of the transplant mean. So the average outcome of the transplant would be slightly better then the average outcome of NHHD (maybe) but NHHD would have a more predictable outcome. A pointier distribution curve means that there is less spread between the outcomes.

Transplant has higher highs and lower lows. Usually when we say which is better, we mean which modality has the better mean; looking at the data it would be understandable for a person to conclude that transplant is the better option. However, another person looking at this data may value predictability, so they might understandably choose NHHD.

At least that's how I see it.

KidneyTalk for the week of February 19th

This week's KidneyTalk is with Glenda Payne who  works for the Centers for Medicare & Medicaid Services (CMS) as an educator and surveyor. One aspect of the conversation is misleading - both Glenda and Lori state that the Conditions for Coverage require that the facilities tell dialyzors about other options for treatment, options beyond conventional dialysis. At the 16 minute mark Glenda says that under patient rights facilities have to tell people about all treatment options. That's not exactly right. The Conditions of Coverage require the facility tell their patients about all the options available through their facility.

This is a significant difference because if the facility does not offer a modality - for instance more frequent home hemodialysis - then the conditions of coverage do not require the facility to bring it up. There is a new version of the Conditions for Coverage floating around but after this KidneyTalk was recorded CMS decided to punt the new Conditions for Coverage to next year, which because of the upcoming election will likely mean that the entire process will start over.

KidneyTalk for the week of February 6th

Lori and Stephen are still in San Fransisco; this week on KidneyTalk they talk about vitamin D with Gail DeWald, who has over 24 years as a Certified Nephrology Nurse.

KidneyTalk for the week of January 23rd

KidneyTalk is in San Fransisco at the annual American Nephrology Nurses Association meeting with Renal Social Worker Ramiro Valdez, Ph.D who talks about difficult staff in front of a live audience. He gives a first person account of trying to walk in a dialyzor's shoes. Well of sitting in a dialyzor's chair by spending some amount of time in a dialysis chair he never did say how long he spent in the chair.

Difficult staff or just a bad run can be hard on both staff and dialyzors, but like any long term relationships there will be rough patches. I enjoyed this show. The one element missing was staff reluctance to encourage self-care and home hemodialysis. I'd like to hear a discussion about staff who don't want the "good" dialyzors to leave or who over estimate the risks of home hemodialysis and/or selfcare.

Lori talks about how hard it can be to control fluid. She calls it commiting long suicide. Hmmm Is it a long suicide or a slow euthanization? I would say that some dialyzors have difficulty bending themselves to fit a short three day a week schedule. People who are having difficulty with controlling their weight gain between treatments should spend less time between treatments The fact that this is such a common problem is clear evidence of the insensitivity of the three day a week dialysis dose restriction. If dialyzors are slowly dieing it is because reimbursement rules are slowly killing them.

Stephen had a good show. I like the recorded in front of a studio audience format. It was pioneered at the Seattle Family Health & Kidney Expo in 2006. It sounded like the bugs have been worked out because this was well done, with very good audio quality.

KidneyTalk

The week of January 9 episode of KidneyTalk is from San Fransisco and the American Nephrology Nurses Association (ANNA) conference. The guest is a nephrology nurse:

Mary Houglum is the type of nurse that every dialysis patient would love to have. Her compassion and desire to be a nurse came from a night nurse she had in the hospital when she was 8 years old. This program will let you hear how she takes the time to listen to her patients to answer questions, resolve issues and explain treatments. Mary tells Lori and Stephen that it is important for the patient to be open and honest with their nurses.

Mary does sound like a nurse you would want at your unit. Stephen is a tough crowd, accepting denial in himself but not others, but it's hard to know when he is being serious or trying for a joke. Advertisements this week include one for fistulas, secondary parahyperthyroidism and NxStage.

KidneyTalk

Each week Stephen Furst and Lori Hartwell release a new KidneyTransplant podcast. I've been a guest twice (here and here) Stephen and Lori keep the witty banter while each week interviewing someone from the dialysis community.

Dialysis is such a large and complicated subject that no two points of view are the same each week; listening to KidneyTalk lets me see the beast through other eyes. One week the guest can be a dialysis industry CEO, the next week a long term patient. The interviews segments are separated by brief commercials - often humorous faux ads for 'products" like protein.

This week the guest is Jessica Fryse who at 19 works and goes to school after 18 years with stage 5 CKD.