May 13, 2008

Dialysis and CKD Blog Report May 13

The journeys continue: personal and as a community

Posted at 08:26 PM in Dialysis CKD Blog Report, Dialysphere | | Comments (0) | TrackBack (0)

2008 Belding Scribner ISHD Award winner Bernard Charra, MD

RenalWEB links to the ISHD announcement that Bernard Charra, MD of Centre de rein artificiel in Tassin France has been named the 2008 Belding Scribner International Society for Hemodialysis Award winner. Dr. Charra has been providing eight hour treatments since the '70s and since the '70s he has reported tremendous success - with world leading mortality rates and fewer dialysis complications generally for his dialyzors, year after year. All through the '80s as mortality rates climbed with shorter and shorter treatment times in the US, Tassin stood out with unshortened runs, and far better outcomes.

I visited Dr. Charra's Tassin unit, just outside Lyon, in 2006 for two treatments. That was a great time on a great trip. In Tassin I was about four weeks in to my first trip to Europe, a trip that included seven units in four countries. It was this trip when I realized that the way dialysis was done in the United States was not the only way dialysis could be provided. There were differences big and small (Europe served food) and it was at Tassin that I came to understand that the length of the treatment was hugely important (I can't mention the Tassin unit without mentioning the food. Four courses. A salad with tomato, a cheese course, steak with potatoes, and desert. Oh and my choice of beer or wine. A very civilized eight hour run). After this trip I lowered my blood pump speed and increased my treatment time.

During my first treatment at the Tassin unit I had fallen asleep - dialysis was in beds and I traveled pretty hard back then, fitting in a lot of sights each day - I woke to find a crowd of people around the base of the bed with doctor Charra in the middle (had he been flicking my toes?). He wanted to meet the visitor from Seattle home of Dr. Scribner. This was before I had engaged with the Northwest Kidney Centers as a Trustee but I knew the doctors Dr. Charra asked after, principally Dr. Scribner. I believe Dr. Charra trained with Scribner here in Seattle. I am sure he is thrilled to receive this award named for the father of ongoing hemodialysis and it is truly deserved - it was Dr. Charra who pushed back against the Planetary Hegemony of Conventional Kidney 'Dialysis (the PHOCK'D situation) from the start and he never gave in, never accepted adequate hemodialysis.

Congratulations Dr. Charra.

Posted at 04:00 AM in Current Affairs | | Comments (0) | TrackBack (0)

May 12, 2008

Dialysis & CKD discussion board report for 5/12

Dialysis & CKD discussion boards activity this week from 5/4 to 5/12. It's an eight day week this report - I flew to Chicago and back over the weekend and caught some kind of plane funk in transit. Angie comes in at a strong number three but IHD had over 3,500 posts - even considering the eight day period that's a lot, over 400 posts a day. Online discussions are a great way to connect with those with CKD and the people that love them. 

  1. I Hate Dialysis 3,519 new posts; 104 new threads; 1,924(+47) members
  2. Kidney Fun 1,083 new posts; n/a; 396(+10) members
  3. Angie's Kidney Community 572 new posts; 102 new threads; 37(+12) members
  4. Kidney Space 263 new posts; 15 new threads; 367(+9) members
  5. Kidney Friends 246 new posts; 48 new threads; 237(+3) members
  6. The Kidney Patient Guide 206 new posts; 18 new threads; 1,508(+4) members
  7. Davita 164 new posts; 20 new threads; 6,100(+29) members
  8. Home Dialysis Central Forums 39 new posts; 7 new threads; 453(+7) members
  9. Renal Romance 25 new posts; 3 new thread; 194(+5) members
  10. Care Giver Talk 21 new posts; 0 new threads; 218(+1) members
  11. Global Dialysis 9 new posts; 4 new threads; 400(+7) members
  12. Life Options 0 new posts; 0 new threads; 255(+3) members

 

If you know of an active discussion board covering CKD related subjects leave a comment or send an email with the URL and I'll add it to the discussion board report.

Posted at 07:08 PM in Dialysis CKD Discussion Board Report, Dialysphere | | Comments (0) | TrackBack (0)

Dialysis & CKD listserv report 5/12

If you need information or support about: dialysis (hemodialysis and peritoneal dialysis; incenter hemodialysis or home dialysis); or kidney transplant; or how to slow kidney disease - look into joining a listserv. Not only is the day to day conversation helpful the archives are a wealth of information - join the conversations (these are all listservs hosted by Yahoo Groups see the Yahoo groups help page for any who, how or when questions about listservs).

Running a day late this week; there's been a lot of movement in rankings. What's going on on the transplant discussion boards? Kidney/Pancreas has nearly 400 messages and kidney transplant is back over 200. If any listserv member wants to write in about activity on their board feel free - I'll publish listserv roundups as I receive them.

  1. Kidney/Pancreas Transplant Recipients 348 messages to 284(-1) members
  2. kidney_transplants 207 messages to 1,066(+1) members
  3. dialysis-support MM 143 messages to 144(+6) members 
  4. iga-nephropathy 138 messages to 2,956(+13) members
  5. PKDCARE 61 messages to 668(-1) members
  6. renalrelating 39 messages to 157(+1) members
  7. kidneykidneydisease 26 messages to 315() members
  8. Autosomal Recessive Polycystic Kidney Disease 22 messages to 319() members
  9. NxStage_Users M 17 messages to 45() members
  10. A_dialysis_and_support_group 15 message to 35() members
  11. EndStageRenalDisease 14 new messages to 401(+3) members
  12. Australian_Dialysis_Buddies 13 Messages to 59() member
  13. NxStageUsersGroup M 3 Message to 80(+1) members

(An 'M' indicates I am a member; 'MM' indicates I am a member and a moderator; criteria for membership is set by list owner; posts in the last seven days; members change in the last seven days; let me know if you have an active group not on the list.

Posted at 06:15 PM in Dialysis CKD Listserv Report, Dialysphere | | Comments (0) | TrackBack (0)

Medical Studies

Anna here - as you can tell from the guests blogging, Bill is on a plane again (as I type this, he is on his way home).

I've noticed that there is a lot of discussion in the Dialysphere with reference to medical studies and publishing.  Well, here in the United States, our government funds a lot of medical research via the National Institutes of Health.  Let's check out what is happening in the world of Dialysis Research.

Currently there are 132 open studies (also called Clinical Trials) under the umbrella of "Renal Dialysis".  These studies encompass many aspects of dialysis all with one objective - to advance the field, and help us live longer and healthier lives.  Here is a list of the sponsors doing studies on "Renal Dialysis":

Government, (excluding U.S. Federal)
Industry
National Institutes of Health
U.S. Federal Agency, (excluding NIH)
University/Organization

Just as an example, here are the Businesses who are conducting studies under the NIH:
                        Abbott    2 studies
                        Abbott Japan Co.,Ltd    1 study
                        Abbott Nutrition    1 study
                        Advanced Circulatory Systems    1 study
                        Affymax    2 studies
                        Amgen    3 studies
                        Angiotech Pharmaceuticals    1 study
                        Astellas Pharma Inc    1 study
                        Baxter Healthcare Corporation    2 studies
                        Cubist Pharmaceuticals    1 study
                        Dialysis Clinics, Inc.    2 studies
                        Fresenius Kabi    1 study
                        Fresenius Medical Care North America    3 studies
                        Gambro Dialysatoren GmbH    2 studies
                        Gambro Renal Products, Inc.    5 studies
                        Genentech    2 studies
                        Genzyme    1 study
                        Hoffmann-La Roche    5 studies
                        Keryx Biopharmaceuticals    1 study
                        LEO Pharma    1 study
                        Merck    1 study
                        Novo Nordisk    1 study
                        Ortho Biotech, Inc.    1 study
                        Pfizer    1 study
                        Rockwell Medical Technologies, Inc.    1 study
                        Shire Pharmaceutical Development    2 studies
                        Tyco Healthcare Group    1 study

Check them out.  This is our future.

Posted at 04:00 AM in Chronic Kidney Disease, Dialysis, Research, Transplant | | Comments (0) | TrackBack (0)

Deadly Skin Cancers after Transplant

This is Peter once again helping out Bill who is returning from a trip.

Last week, I met another patient at my in center dialysis unit who is preparing for a living related transplant from one of her sons. She is a very vibrant lady who loves horses and the great outdoors in sunny California. I struck up a conversation with her on home dialysis issues and most especially on the issue of severe and frequent skin cancers in solid organ post transplant patients. She was completely unaware of the increased skin cancer risk and also of the fact that she will likely have to modify her involvement with horses and sun exposure post transplant despite already completing her pre transplant informed consent procedures.

There are three main types of skin cancer, Basal Cell Carcinoma (BCCA), Squamous Cell Carcinoma (SCCA) and of course the dreaded melanoma which is epidemic throughout America especially in those areas such as Southern California where sun worship is tantamount to a national sport. In patients with normal immune function, malignant melanoma is the most severe type of skin cancer linked to high mortality if not found early. BCCA is almost always a limited local cancer treated very effectively with various surgical procedures and SCCA is usually likewise an easily treated cancer by surgical methods alone, although even with normal immune status, SCCA can at times spread even in this population.

However, with solid organ transplant patients, SCCA is much more common and furthermore has a greater tendency to metastasize (spread) early and have poor outcomes. What is surprising is not only the lack of awareness among transplant patients and transplant candidates but also among nephrologists and primary care physicians. Renal transplant patients experience a 9% risk of developing cancer post transplant and SCCA is one of the most frequent causes of post transplant cancer deaths due to the high rate of spread.

All patients considering renal transplant should discuss these issues with their referring nephrologist, transplant specialist and primary care physicians and then should further consider a baseline dermatology evaluation as well as regular post transplant screening examinations by a board certified dermatologist.

Further, aggressive sun avoidance and use of both clothing and sun screen is an essential part of preventing this deadly cancer. Early changes leading to SCCA appear as hard, scaly, red or white patches on sun exposed areas. In post transplant patients, early treatment is needed for even very small lesions to avoid the possibility of metastatic SCCA spread which does not respond well to various chemotherapy and radiation treatments.

Posted at 12:03 AM in Transplant | | Comments (0) | TrackBack (0)

May 11, 2008

CKD links and resources

CKD Knowledge
The CKD Players

New links added on Sunday May 11th

Professional Organizations

Posted at 04:00 AM in CKD, Dialysis and Kidney Transplant Links, Dialysphere | | Comments (0) | TrackBack (0)

Presumed Consent: a right to life or the gift of life

Howdy, my name is Peter and I have been a dialyzor since February 1, 2007. Bill asked me to help out with some posts while he is traveling.

In keeping with Bill’s tradition of political issues, there is an important battle brewing in the UK and other countries regarding a transplant donation procedure called presumed consent. The operative ethical paradigm for transplant donation has been informed consent and an “opt in” procedure that was further agreed to at the time of death by the donors family who had the final authority to approve or disapprove of donation. In England, Europe and Australia, there are proposals on changing to a presumed consent system of organ donation where those that do not wish to donate for personal or religious reasons would be required to “opt out” with a written refusal of organ donation while still competent. Otherwise, all medical suitable “specimens” will be automatically considered as organ donors and families will have limited ability to appeal this decision.

Surprisingly, America has also moved with the Revised Uniform Anatomical Gift Act which also incorporates the same “Presumed consent” here in the US as well, yet quietly and without the fanfare of discussion as seen in Europe and Australia.

On a personal appeal, although there are benefits of renal transplant that are quite attractive, in my own opinion, I would not feel comfortable accepting a renal transplant graft from anyone that has not explicitly consented to serving as an organ donor and likewise having the blessing of their family. Do those of us with ESRD have the “right” to a renal graft or is it still a supreme gift of love from one person to another?

Thus, are we moving from a “gift of life” to the “duty of life” here in America and around the world. Are the rights of the individual even over our “own” organs and body tissues now fallen to the state’s utilitarian ethos of duty and obligation above autonomy and personal considerations? In fact, by Talcott Parsons treatise on the “sick role,” will it next be considered by the state that all ESRD patients should likewise undergo renal transplant in the “best interest” and “duty” of a citizen of their respective countries since the “obligation” of those that are sick is to help to get better and to comply with treatment? Will we thus have “presumed consent” for donation coupled later with enforced renal transplant? Would those that refuse renal transplantation be subjected to loss of funding?

This leads one to once more ask what is the political mindset that keeps daily dialysis off the shelf of optimal renal replacement therapies? It is certainly not for lack of evidence of the benefits of quotidian dialysis that has been available for over thirty years. In my opinion, there appears to be a subverted political expediency leading directly to renal transplant as the only viable long term treatment option offered. My only question is why?

Posted at 12:18 AM in Transplant | | Comments (0) | TrackBack (0)

May 10, 2008

Dialysis and CKD Blog Report May 10

The journeys continue: personal and as a community

  • The life of a 20-something with Lupus gets shot down by surgeon who could fix stomach scar - feels like can't catch a break (when Flow said her eye started to twitch I was right there with her)
  • Kaply Inc. our source for topless donut information; feeling better; not a big morning/daytime TV fan; gets blogtations bump; will spend weekend cleaning (that would be wise)
  • On the road to a cure Lupus Foundaiton gala brings in big bucks - 1.5 million! (nice job)
  • I am. Are you? runs impressive web 2.0 operation: videos, social marketing, daily blogging
  • Toastiest gets to have primary (NC primary multiple posts); pet pic; turns to Burma
  • Jack's kidney adventure has surgery; hulk now Big Daddy, notes Eddie Arnold passing; shows off stitches and straight-ish finger
  • Kamal Shah sees a bit of oozing from venous site; questionable iPhone battery performance; cryptic questions from Mac; has an arterial issue (a clot?); sees some oozing after picking off the scab on the arterial site - now on antibiotics
  • Eating well on dialysis low sodium mayonnaise; a steak marinade - both from "Cooking Without a Grain of Salt"
  • Writings on the cave wall say no to trampolines
  • Really I'm as old as I feel is polite to wrong texter; cute baby pic; studies for blood test
  • Chronic positivity blogs up a storm - new medications; new medication management system; is home; has post surgery discomfort but is peeing up a storm
  • Tasty kidney pie another correspondence pointing up the advantages of a living donor v. cadaveric transplant
  • The truth about dialysis for patients offers Match D type tool
  • Stayin' alive expects easy run using catheter, has nothing but problems
  • The dialysis diary is excited to be able to report unresolvable alarms, bails on treatment
  • As the pump turns is tired of small town life; notes dialysis units have temperature problem
  • Kevin's blog has been busy but fits in some more Frisbee golf - ready to go to PD
  • Hasten down the wire let's us know that laptops can be searched at boarder too (is there a boarder to in the world more unpleasant boarder to cross than the US boarder in the last 6 years?)
  • Life on dialysis. Waiting for the call 21st birthday party photos - pink limo and transvestites; sub par cannulation experience 
  • KidneyNotes explains why the NYT wasn't exactly right; sketchy Zetia reps
  • PKD & dialysis is using fistula successfully
  • dailyhemo  links Bill Moyers Medicare for All episode with California Nurses Association
  • Nathan's PKD has allergy test - answer is yes
  • Kidney diet tips is pro rice
  • Kidney postings blog notes new DaVita URL
  • Strnad family digest is approved to have transplant match testing done - new kidney by summer?
  • Daily dialysis (translated from Spanish) guest blogger reports operation was a success 

Posted at 04:00 AM in Dialysis CKD Blog Report, Dialysphere | | Comments (0) | TrackBack (0)

May 09, 2008

Light weekend blogging

I'm traveling this weekend, blogging will be spotty while I spend most of my time on planes.

Posted at 09:15 PM in DFTSEOTN News | | Comments (0) | TrackBack (0)

Canadian train in quarantine

The H5N1 flu boards have been lit up by this story. There are many other possibilities other than H5N1 but then again something like this is exactly how many of the H5N1 table top planning exercises start. This will be worth watching.

Posted at 09:40 AM in Current Affairs, Pandemic | | Comments (0) | TrackBack (0)

More on Kjellstrand paper

Mark at Nephrology News & Issues writes about the Kjellstrand et al paper which compared daily short hemodialysis to incenter hemodialysis and cadaveric transplant. Mark does a good job explaining the paper's conclusions and what it might mean to the community and he has some correspondence from Kjellstrand including this:

If he had to go on dialysis, the Swedish-born nephrologist wrote, “I would advice long night dialysis as the first choice, short daily as the second and a transplant as the third and only if the dialysis did not go well.”

That is an unambiguous statement from a highly informed individual.

Posted at 04:00 AM in Daily Dialysis, Extended Nocturnal, Home Hemodialysis, Research | | Comments (0) | TrackBack (0)

May 08, 2008

Lufkin TX dialysis unit closure news summary

The Lufkin Daily News has a summary of the situation at the Lufkin DaVita dialysis center. The now 13 pages of comments are appended to the most recent article (the most recent 10 pages of comments are linked at the end of the article). Now Roberta Mikles (longtime advocate and member of the online renal community) and Joe Atkins (MSN Dialysis & Transplant City) are in contact with the paper, which is helping to correct the common misconceptions that often get reported, such as Medicaid paying $1,000 per treatment.

The billing and payment of dialysis can be confusing, and Medicaid payments do very from state to state but generally Medicaid payments are closely in line with Medicare payments which are in the range that Joe gave (remembering Medicare pays 80% of the charge and there are separately billable items). The other area of confusion seems to be the idea that people on dialysis are very sick, so maybe having a cluster of deaths isn't so odd but a distinction has to be made between dying from kidney disease (often through heart problems) and dying while on dialysis.

Routine, maintenance dialysis, the actual procedure, is safe and should not routinely result in hospitalization or death.

Posted at 09:18 AM in Current Affairs | | Comments (0) | TrackBack (0)

Definitive care for the critically ill during a disaster

The The American College of Chest Physicians journal CHEST has made available online the four part report on the management of mass critical care - Definitive care for the critically ill during a disaster. One can imagine other threats but it is the looming threat of a pandemic that's been called inevitable, that has  focused the minds and motivated people to come together to create this four part discussion for managing a mass casualty event.

Part one Current Capabilities and Limitations lays out the lack of critical care surge capacity. Part two A Framework for Optimizing Critical Care Surge Capacity identifies what will be needed for emergency mass critical care - ventilators and IV fluids. Part three Medical Resources for Surge Capacity goes through how to surge up critical care during an emergency. Part four A Framework for Allocation of Scarce Resources in Mass Critical Care is the discussion of most interest to the provision of dialysis.

My concerns are many with regard to pandemic planning - the mixed messages coming from political leaders, our acute vulnerability from our just in time economy, our fragile infrastructure- but it is planning to maintain the provision of dialysis that is my primary concern. I have participated in the CMS sponsored pandemic planning effort through the Kidney Community's Emergency Response coalition pandemic planning team since last May. I know that the kidney community's planning assumptions are that dialysis will have the same relitively high priority in a pandemic emergency that it has in other natural disasters.

We are all familiar with the concept of triage in the context of an earthquake or plane crash, when in the moments and hours after the event medical resources can be overwhelmed and tough decisions have to be made by personnel on the scene. However, while that is happening additional resources will be on their way, at least that is the expectation. These four papers are talking about a different kind of triage. The dialysis community has to come to terms with the reality that in a severe pandemic the provision of dialysis will be a low community priority and going to the hospital will not be an option.

Posted at 04:00 AM in Pandemic | | Comments (0) | TrackBack (0)

May 07, 2008

Daily dialysis outcomes rival a cadaveric kidney transplant

RenalWEB links to an advance access abstract from Nephrology Dialysis Transplantation. Short daily haemodialysis: survival in 415 patients treated for 1006 patient-years Kjellstrand et al, concludes:

Survival of patients on short daily haemodialysis was 2–3 times better than that of matched three times weekly haemodialysis patients reported by the USRDS.

A 2 to 3 times mortality advantage doing short daily dialysis suggests that long extended overnight dialysis will offer an even greater benefit. One result:

Survival of patients dialyzing daily at home was similar to that of age-matched recipients of deceased donor renal transplants.

does raise my question asked previously - should we now sell the idea of frequent home hemodialysis as enthusiastically as transplant is sold?

Posted at 05:36 PM in Daily Dialysis, Extended Nocturnal, Home Hemodialysis, Research | | Comments (0) | TrackBack (0)

AAKP HealthLine call May 22nd to focus on pain management

The American Association of Kidney Patients next HealthLine call  is May 22 at  1:30 p.m. - 2:30 p.m. Eastern Time (ET). Register online or call (800) 749-AAKP to register. The faculty for the call will be Dr. Stephen Fadem, MD, FACP, FASN; Dianne Halderman, RN, CHP; and Renee Bova-Collis, MSW, LCSW. They will "focus on different types of pain experienced by Pre-ESRD and ESRD patients as well as ways to possibly manage those pains." 

Past HealthLine calls are archived and available to listen to online.

Posted at 04:00 AM in HealthLine | | Comments (0) | TrackBack (0)

May 06, 2008

China maintains stance that their contaminant was not the problem

RenalWEB links to reports from Bloomberg and the International Herald Tribune that China continues to deny responsibility for the 81 deaths in the United States from tainted heparin. The Chinese are not denying that the raw heparin was contaminated, only that their contaminate - oversulfated chondroitin sulfate - did not cause the reactions. They point to Baxter being uncooperative but do not seem to mention the recent papers from MIT which made the link between the heparin deaths and oversulfated chondroitin sulfate.

The Chinese report that they requested detailed medical histories for each of the victims - comorbidities and such. The suggestion is that these individuals must have been pretty sick to need dialysis - they would have died anyway, the oversulfated chondroitin sulfate was incidental to their death. This is very aggravating. The fact that people who need heparin are sick is all the more reason that the medicines they inject directly into their blood stream need to be of the highest purity.

Posted at 08:13 PM in Current Affairs | | Comments (0) | TrackBack (0)

Where does dialysis fit into pandemic planning?

First it was in regard to ventilators now it is hospital medical care, by now it should be clear that people on dialysis are on the wrong side of pandemic triage guidelines. A pandemic would be unlike any other natural disaster we've experienced - a pandemic would be happening everywhere at once; communities would be on their own to cope as best they can.

The report, produced by:

a task force whose members come from prestigious universities, medical groups, the military and government agencies. They include the Department of Homeland Security, the Centers for Disease Control and Prevention and the Department of Health and Human Services

concluded that in a pandemic those that are very old, seriously hurt, severely burned and/or those with chronic illnesses not be treated. That medical resources should be used on those who are younger and otherwise healthier. I think that at some point all those concerned about dialysis have to understand that as things now stand people on dialysis will not be accommodated in a severe pandemic.

As I wrote in commenting on the ventilator post incenter dialysis has a long logistical tail and in the event of an event people on dialysis will not be special. If anything we have special obligations. Dialyzors should be prepared to be first into any breach. The only way incenter hemodialysis could continue incenters during a pandemic would be with volunteer staff and supplies stockpiled at the last minute.

We would have to change dialysis standards of care in advance of local spread of a WHO stage 6 pathogen. When word came that H5N1 is spreading easily somewhere in the world we would have to institute a resource conservation measure then - well before local spread. A resource conservation strategy would decrease the frequency of dialysis by 33%. Two longer treatments a week instead of three, while continuing to order supplies as if you were consuming them at the previous rate - building a supply stockpile.

I've been on the Kidney Community's Emergency Response coalition pandemic planning team since last May, I am very informed about preparations at my provider and on the provider side generally; I can say that as an industry we are not prepared. Most patients rely on funded transportation - in a pandemic how are they suppose to get to dialysis? A pandemic lasts for months, currently preparations are for time frames measured in days or weeks. How's that suppose to work out? A lot of dialysis pandemic planning has "go to the hospital" as a fall back strategy - that should not be imagined to be an option. If saline is in short supply - because of all the dehydrated people in flu wards - where will dialysis units get the saline they need? Same goes with everything else a surge flu ward would need - from bleach to syringes to masks & gloves.

I'm not sure what could be done to change this reality, or even if it would be ethical to continue the provision of dialysis during a severe pandemic. The one clearly ethical thing to do is to let people who are on dialysis know that in an event they will not have access to medical care. Those that can should either learn to dialyze at home and stockpile sufficient supplies, or understand they are wagering that nothing will happen, which is a hell of a bet.

How many supplies one should stockpile depends on many unknowns but as always you don't have to out run the bear, just the people you're with ... after a month or two of a severe pandemic there will be a lot of excess treatment capacity for any home dialyzors still around.

Posted at 04:00 AM in Current Affairs, Pandemic | | Comments (0) | TrackBack (0)

May 05, 2008

Lufkin DaVita dialysis probe expands to 18 months

It is still not clear what happened in April at the DaVita dialysis unit in Lufkin TX but since the unit was closed last Monday an investigation of the unit's clinical outcomes has expanded from 30 days to 18 months. According to the Lufkin Daily News:

Officials are not releasing the number of patient deaths at the center because the time period of the investigation keeps changing, [administrator of Angelina County and Cities Health District] Shaw said.

The facility is expected to be shut down a minimum of 45 days — part of a regulatory agreement with the state — while officials pore through dozens of documents, interview patients and send off lab equipment and water used at the facility to test for contamination, the spokeswoman said.

The article states that over 20 people are working on the investigation.

In the 10 pages of comments to a previous story in the Lufkin Daily News 8 or 9 deaths are put forward after a review of the local obituaries. That would be a big number for a month at a 120 person unit. Given the standard mortality rate of 23% nationally you could expect 2 or 3 deaths every month but those deaths would rarely result directly from dialysis. Typically mortality occurs due to the ravages of the disease not because of the treatment, which if done correctly is safe.

I am sure investigators are looking not only at how many people died but also their proximate cause of death.

Posted at 09:54 PM in Current Affairs | | Comments (0) | TrackBack (0)

Dialysis and CKD Blog Report May 5

Jeff at Chronic Positivity received a transplant - blogs from start to finish

  • The life of a 20-something with Lupus starts new skin therapy; wants stomach scar fixed; grrrr supply delivery problem (see Anna - not just NxStage); unit takes Miz Flow's side; has pictures after 7 days of skin care
  • Drinking my way through Trader Joe's wine a sparkling wine on a dreary day
  • Kaply Inc. sets up local blog get together (on night I'm previously engaged); tries not washing hair, it gets oily; SizzleCon is a go; Sizzlecon was great
  • On the road to a cure clinical trials/studies; May is National Lupus Awareness Month; thinks of fun summer activities for those with photosensitivity
  • I am. Are you? debunks donation myth; relate mascot name stories (I agree with Chicagoist)
  • Toastiest pet video; Dear Knoxville letter; reviews; low sodium is a problem
  • Jack's kidney adventure post newsletter editorial asking for volunteers; Marks May Day, has uneventful runs; needs surgery for Dupuytren's Disease (?), Kick Kats, Pete Seger and Susie Blakely are featured
  • Kamal Shah is drinking bottle gourd juice, has to remind family to cut him slack; a friend from school days is now a doctor, seeing why he feels out of breath (getting out of shape happens fast, hope the prescription is for daily walking); finds three KGs over dry feels like more
  • Eating well on dialysis follows up previous Cole Slaw recipe with a Pineapple version; an unsalty French Dressing (nice)
  • Writings on the cave wall gets a transplant work up; needs A+ kidney - everyone in her circle seems to be A+ too; crafts Mother's Day presents
  • KCER post the Atlantic storm season forecast (will we be lucky a second year? I wouldn't count on it)
  • Really I'm as old as I feel does an alphabetical bio blog; a wordless blog; preshops for Mother's Day gifts - Must. Keep. Secret.
  • Chronic positivity has some RLS, fistula appointment; experiences a "snowstorm" during fistula procedure; run down with a virus; gets a call - primary this time; still waiting; does a heparin free run in case transplant is a go; IT'S a GO - Jeff is an unrinator again; is  up and walking but still shaky (congratulations!)
  • Tasty kidney pie writes note to someone recently diagnosed with FSGS; writes to someone with early stage CKD
  • The truth about dialysis for patients 71 year old donor
  • Stayin' alive mentions RSN video and DFTSEOTN (but no link?), is having problems: needle sticks clotting and leg pain, low blood pressure (hope you get the leg pain addressed, dialysis is tough enough without chronic pain)
  • PKD pugilist researches pregnancy on dialysis
  • My wife has lupus is pro Word Press
  • The dialysis diary goes over to the Mac side; has some temperature alarms; plans summer vacation near near Algonquin Park in Central Ontario
  • As the pump turns wants to work in Seattle at nonprofit dialysis center (hmmm who could that be?); has blurry photos of new Medisystem blunt needle with scab remover attachment; new tech; photos; loses ID/debit card
  • Kevin's blog had a rough week, decides on peritoneal dialysis
  • Hasten down the wire does a great job pulling together the heparin story; another excellent post giving an overview of bundling - links to DFTSEOTN
  • Let us consider one another has severe pain but changes his understanding and point of view and finds the pain subsides; had a bad run - will look to pharmaceuticals to help
  • Waiting for a transplant is too busy having fun with new kidney to blog
  • Team teddy bear provides calender of events for Hudson Valley Chapter PKD chapter
  • Life on dialysis. Waiting for the call brings us up to date on her busy schedule; made the paper; accomplishes first official duty as Live Life Then Give Life North West advocate
  • KidneyNotes links to study showing injections of silicone in the buttocks by an unlicensed practitioner are a bad idea
  • PKD & dialysis shares many photos from 2008 NKF walk; surgeon says new fistula is ready to go; first fistula use goes well
  • dailyhemo linkls to petition; post on Games for Health Conference 2008 in Baltimore, Maryland, on May 8-9
  • Nathan's PKD get's probably no test result for TB
  • KCER will be exhibiting in May at disaster preparation planning conferences
  • Kevin's blog starts book, plays frisbee golf, catheter survives

Posted at 05:21 PM in Dialysis CKD Blog Report, Dialysphere | | Comments (0) | TrackBack (0)

What is a quality-adjusted year of life for a dialyzor?

RenalWEB links to an article from the Wharton School of the Univ. of Pennsylvania and a related bloq post from The Huffington Post that comments on and analyzes a new paper that looks to update the renal dialysis cost effectiveness standard. RenalWEB even offers a rare, blog-like commentary:

Dialysis patients whose treatment costs exceed $240,000 per QALY [quality-adjusted year of life] fall in the top 10%. The study points out that 50% of the Medicare's  ESRD costs are used to treat the "sickest" 10% of dialysis patients.

The question is if and/or when this kind of cost data will be used to determine a patient's access to dialysis treatments. The study will appear in an upcoming issue of Value in Health.

I just can't explain these numbers. The coverage is tantalizing but it's clear I don't understand the key points. From the Knowledge@Wharton article:

The study results show that the incremental cost effectiveness ratio of dialysis in current practice relative to the next least costly alternative is on average $61,294 per year, or $129,090 for a quality-adjusted year of life (QALY) -- a measure that combines the length of time that life is extended and the quality of that life.

However, the distribution of cost effectiveness across the entire population is wide. For the lowest percentile, it costs only $65,496 to provide an additional quality-adjusted life year. For the top percentile, the figure is $488,360. The higher costs per quality adjusted life year were strongly associated with old age and additional chronic illnesses in addition to end-stage renal disease, the researchers found.

I am afraid I can't make sense of this I am familiar with the USRDS numbers. As I would normally describe it, total Medicare spending for someone on Dialysis (not in a SNF) is about $55,000/year, since this is 80%, that puts total average total cost around $69,000. However the lowest percentile must be quite a bit less.

Taking myself as an example, my "cost" in 2007 it was almost entirely the composite rate, along with below average use of injectable medications (10% of average EPO use) and low use of medications that typically fall under Part D. I haven't added it all up but it must be in the $15,000 to $20,000 range when including physician fees. So, at least for 2007, I reckon I'm a bargain and would be in the lowest percentile. Where do I fit into the data?

If commenters want to try and explain where the numbers come from I'd be obliged - I've emailed the author too, I'll share anything I learn.

Posted at 11:31 AM in Current Affairs | | Comments (0) | TrackBack (0)

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.

Posted at 04:00 AM in Current Affairs, RSN | | Comments (0) | TrackBack (0)

May 04, 2008

Dialysis & CKD discussion board report for 5/4

Dialysis & CKD discussion boards activity this week from 4/27 to 5/4. Angie's Kidney Community has a new URL angieskidney.com/smfbb/ and new data, will be ranked again next week.

  1. I Hate Dialysis 1,930 new posts; 86 new threads; 1,887(+22) members
  2. Kidney Fun 1,300 new posts; n/a; 386(+23) members
  3. Kidney Space 250 new posts; 21 new threads; 358(+9) members
  4. Kidney Friends 232 new posts; 46 new threads; 234(+2) members
  5. The Kidney Patient Guide 196 new posts; 39 new threads; 1,504(+4) members
  6. Davita 145 new posts; 13 new threads; 6,071(+25) members
  7. Home Dialysis Central Forums 27 new posts; 4 new threads; 446(+4) members
  8. Care Giver Talk 19 new posts; 1 new thread; 217() members
  9. Renal Romance 16 new posts; 1 new thread; 194() members
  10. Global Dialysis 3 new posts; 2 new threads; 393() members
  11. Life Options 0 new posts; 0 new threads; 252(+1) members

Angie's Kidney Community New URL/Data

If you know of an active discussion board covering CKD related subjects leave a comment or send an email with the URL and I'll add it to the discussion board report.

Posted at 04:37 PM in Dialysis CKD Discussion Board Report, Dialysphere | | Comments (0) | TrackBack (0)

Dialysis & CKD listserv report 5/4

If you need information or support about: dialysis (hemodialysis and peritoneal dialysis; incenter hemodialysis or home dialysis); or kidney transplant; or how to slow kidney disease - look into joining a listserv. Not only is the day to day conversation helpful the archives are a wealth of information - join the conversations (these are all listservs hosted by Yahoo Groups see the Yahoo groups help page for any who, how or when questions about listservs).

  1. iga-nephropathy 174 messages to 2,943(+7) members
  2. kidney_transplants 130 messages to 1,065(+8) members
  3. Kidney/Pancreas Transplant Recipients 71 messages to 285() members
  4. renalrelating 60 messages to 156(+2) members
  5. NxStage_Users M 40 messages to 45(+1) members
  6. dialysis-support MM 37 messages to 138(+5) members
  7. PKDCARE 29 messages to 669(+7) members
  8. Australian_Dialysis_Buddies 29 Messages to 59(+2) member
  9. Autosomal Recessive Polycystic Kidney Disease 22 messages to 319() members
  10. EndStageRenalDisease 16 new messages to 398(+1) members
  11. A_dialysis_and_support_group 15 message to 35() members
  12. kidneykidneydisease 9 messages to 315(+1) members
  13. NxStageUsersGroup M 9 Message to 80(+1) members

(An 'M' indicates I am a member; 'MM' indicates I am a member and a moderator; criteria for membership is set by list owner; posts in the last seven days; members change in the last seven days; let me know if you have an active group not on the list.

Posted at 01:53 PM in Dialysis CKD Listserv Report, Dialysphere | | Comments (0) | TrackBack (0)

CKD links and resources

CKD Knowledge
The CKD Players

New links added on Sunday May 4th

Professional Organizations

Posted at 04:00 AM in CKD, Dialysis and Kidney Transplant Links, Dialysphere | | Comments (0) | TrackBack (0)

May 03, 2008

Editorial from Lufkin Daily News

The Lufkin Daily News has an editorial up concerning the DaVita dialysis unit in Lufkin that was closed suddenly on Monday April 28th after some number of deaths during the month:

We encourage the center, and the state department that is investigating it, to be more open with information as the investigation progresses. Its patients, and the community, deserve to know what's happening — even if we don't yet know why it's happening.

The initial article now has 8 pages of comments (scroll to the bottom of the page).

Posted at 11:24 PM in Current Affairs | | Comments (0) | TrackBack (0)

Peritoneal dialysis video - how to hook up for CCPD

This video is from Shay, www.KidneyFun.com owner and shows how she set up, hooked up, and unhooked from her Continuous Cycling Peritoneal Dialysis machine -  this is an overnight  dialysis modality that does not involve needles. The video is a bit over 6 minutes - some of the captions are hard to read but after watching the video you'll know what's involved in hooking up each night. One thing I wondered is without edits how long does it takes from start to finish?

Posted at 04:16 PM in Peritoneal Dialysis, Videos | | Comments (0) | TrackBack (0)

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.

Posted at 04:00 AM in Dialysis (ESRD) Payment Bundle, Dialysis Financing (US), RSN, Videos | | Comments (0) | TrackBack (0)

May 02, 2008

AAKP supports home hemodialysis pilot program

The AAKP has posted a letter it sent on April 22nd to Senator John Kerry of Massachusetts (PDF link). It's a little curious because it's asking the Senator to support "a home hemodialysis pilot program in Medicare", which would be great but this sort of thing requires legislation and unfortunately there's not been any frequent hemodialysis legislation this Congress but maybe the AAKP knows something. In the last Congress (the 109th, we're in the 110th right now) HR 5321 the Access to Better Choice in Dialysis Act of 2006 was introduced in House but not the Senate. For legislation to have a real chance there needs to be a House and Senate version.

Even with a House and Senate version, at this point in the legislative cycle it would be unlikely for any new legislation to make it through the process. Of course the Senate can do whatever it wishes, they could tack a provision authorizing a pilot program on to another Medicare Bill. The rumor is that the Senate will try to include ESRD provisions in whatever Medicare Bill fixes the physician payment issue but bringing frequent dialysis into the discussion at this point seems unlikely.

There is another tactic one could use to improve the provision of dialysis by making it easier to start and run home hemodialysis programs - the appropriation process aka earmarks. Massachusetts has two powerful senior Senators - Kerry and Kennedy - they could support an earmark to pay for each home dialysis training session. Right now when someone trains to go home on the NxStage or any other modality of home hemodialysis they go incenter 5 times a week to train (with one on one nursing support) but the center is only reimbursed for three treatments.

There is a $20 training add on to the standard reimbursement but two sessions remain unreimbursed which makes starting a training program that much harder. A $2 to $3,000,000 earmark would go a long way to reimburse for every training session or at least two weeks of fully reimbursed training. Something. Additional support for home training will increase access to  much healthier frequent dialysis which is generally available only at home. Access to frequent dialysis should not depend on one's zip code - this would be an inexpensive way to support the current training centers and geographic