Dialysis from the sharp end of the needle

Dialysis & CKD Blog Report 7/31

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 7/28.   If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle I wrote about research that shows shielding blood from light during dialysis may have beneficial effects; Peter reports on Shad Ireland's grand finish to his cross country bike journey.
• Kaply, Inc. Seattle is hot as blazes so Tracy goes shopping for fans, and dunks kittens to cool them off; has a video of a young man replicating Beyonce's "Put a Ring On It" dance video (He is quite amazing!)
• Toastiest lists and rates some of the movies he's seen lately; hates being alone.
• Birdman His daughter and family are visiting, life is good, photo link.
• The Life of a 20-Something With Lupus Her hemoglobin dropped to 10.2 which explains her fatigue, she was so tired she neglected to get her Aranesp, which might explain the drop, a nice comment from a stranger makes her day; woke up with a bad stomach ache and has lots to do, not sure if she can get going but is going to try. (You are a real trooper! I couldn't move with a Hgb that low.)
• Becky Perry lists five more things that make her happy.
• The Adventures of Stacy Without An E He hasn't been sleeping or eating much, and is losing blood on dialysis so he answers 50 random questions about himself he found on Facebook.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease After discussions with his doctor and pharmacist, Jeff decides he will take generic Cellcept when he's back on the medication.  He provides some good links for information on funding these prescriptions if you need help.
• On the Road to a Cure Does ethnicity play a role in treating lupus nephritis?; guest blogger, Amanda Davenport, dishes on Hell's Kitchen, and shares a delicious salmon recipe.
• Really, I'm as Old as I Feel? chronicles the first part of his road trip beginning with car problems and some of 2--year old Abby's cute new behaviors.
• I Am. Are you? has a video profile of kidney recipient, Ed Farmer, former Chicago White Sox announcer.
• Life on Dialysis Samiir enjoys the first hiking trek of the season but low blood sugar cuts it short.
• Bud's Ramblings has photos of his front yard and brand new Jazzy electric wheelchair. (Now we need a photo of you zipping down the street, Bud.)
• Precious Bodily Fluids has a link to his handouts from his acid-base lecture; recommends Burton Rose's masterpiece: Clinical Physiology of Acid-Base and Electrolyte Disorders to renal fellows who really want to know about electrolytes.
• Renal Fellow Network A study reports the identification of a new disease gene in a rare tubulopathy syndrome (EAST Syndrome) that sheds light on the physiologic mechanisms of salt transport in the kidney; writes about the organ trafficking bust that occurred this week; a brief list of some of the medications used to control hyperglycemia and their caveats unique to CKD.
• Uremic Frost An article reports that uncooked meats and poultry are commonly enhanced by food processors using phosphorous salts. The extra potassium and phosphorous is not only unrecognized, it is unaccounted for by reading the food label and could be quite dangerous (So, be careful, Folks!); has a link to the new NephSAP download; shares a report that North Korea's  Kim Jong-ll is on dialysis.
• Renal tsar's blog has a Q & A about kidney outpatients.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) reports his dialysis network is growing from more exposure on the internet.
• Neophron's Senescence has an animated video making fun of Arnold Schwarzenegger.
• pkdmom2five has photos of a cute little boy; shares a bunch of fun facts and trivia.
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to a Washington Post story reporting that NIH is encouraging its scientists and science writers to edit and even initiate Wikipedia articles in their fields.
• Lemonade and Kidneys turned 42 and got nice gifts from her family (Happy Birthday, Ruth!), declares a moratorium on writing about her kidneys for the time being, is fund-raising for the PKD walk, and had a wild time in Baltimore with her friend, Maureen.
•  Chronicals of the PD Warrior posts the infamous article critiquing chiropractic that got Simon Singh sued.
• The Ballad of Billy The Kidney John is off on vacation, back in early August. (I know he's having a great time as he sent me postcards!)
• My Chronic Kidney Disease shares his favorite juicing combinations.
• My New (Transplanted) Kidney Post-transplant now, Allan seems well but creatinine is sill too high; both Leon and Al nauseated; Al has MRI that shows kidney is working but creatinine hasn't changed; Leon now recuperating in the hotel, Allan gets emotional (probably caused by meds), has a biopsy which makes him sick to hs stomach. (We're sending good thoughts your way that things resolve well and you feel better soon.)
• DailyHemo - Home Dialysis Advocates New Video: Kidney Dialysis Patients Can Get Treatment at Home.
• Encompass Network Partners reports on the Polarcath system, a sophisticated form of treatment combining cold therapy and angioplasty to open blockages and avoid leg amputations.
• Renal BizBlog announces the first Arkansas Kidney Disease Summit will be held on Aug. 18  in Little Rock, Ark. The goal of the summit is to raise  Arkansans’  awareness of renal home therapy and other advancements made in kidney disease.
• Bridge of Life has background information about how the new dialysis center in the Philippines got started.
• Kim Hoben's Blog Kim's home training was delayed and the in-center clinic changed her time slot with no consultation with her, totally messing up her summer plans and ability to work.  She posts a video protesting the lack of control dialyzors have in the Halifax, Nova Scotia system.

Ironman Shad Ireland Inspires to the Finish

By Peter Laird, MD

Ironman Shad Ireland, a professional ironman competitor has completed his 4000 mile What Inspires You Tour.  What makes this feat so remarkable is from where Shad came to overcome the ravages of death and coma, to that of a man that is an inspiration to me and those that suffer with renal failure.  As Shad celebrates the completion of his cross country journey, I believe remembering what Shad stated before he started this epic adventure sums up in many ways the spirit that inspired Shad.

In an article from diablo magazine, Shad told the story of what inspired him to begin an exercise routine shortly after coming face to face with death:

“At age 10 I began dialysis, and at age 16 I was told I wouldn’t live past 25,” Ireland said. Later, at age 18, Ireland underwent a failed kidney transplant that resulted in him weighing only 75 pounds and falling into a coma. He said that when he was finally released from the hospital, his parents were told that he would only have six months to live and to plan funeral arrangements.

“Dialysis was difficult for me. I really struggled. I was your quintessential non-compliant patient. I had no hope,” Ireland said.

He explained that the turning point came later and gradually. Ireland mentioned one experience that stood out in his mind. It came while he was recuperating from his coma. He said that he remembers watching the 1997 Ironman competition on TV for the first time and being inspired by triathletes Sian Welch and Wendy Ingraham as they collapsed yards from the finish line and crawled the remaining distance:


Ireland said that when those runners began to crawl forward, that’s when something jumped inside him.

“At that moment I remember sitting on the couch and thinking to myself, just cheering for her and wanting to know what drove her. At that moment, whatever it was she had, I wanted. And it was that afternoon that I made a promise to myself that that was going to be me someday,” Ireland said.

The spirit that lives within us to overcome obstacles and challenges to our bodies whether by illness, brutal races or a 4000 mile bike tour is what Shad has inspired all of us, healthy or not to reach for the optimal limit of our endurance.  American's on dialysis face the dread of death daily.  America finishes in last place keeping American's with severe renal disease barely alive, let alone thriving as Shad now is. Shad inspires all to reach out and go beyond their limits.  It is my hope that many who believe living on dialysis is worse than the curse of death will look at what this man has accomplished and know and understand that we can do better as a nation in providing optimal renal care.

It is time for all American nephrologists to wake up out of their dialysis adequacy coma and fight against government imposed obstacles to optimal care. There is more than one gift of life to those such as myself with renal failure.  Daily dialysis restores health and hope to those that are fortunate enough to have it.  Daily dialysis saves costs from reduced secondary health care expenditures. Daily dialysis should by a source of inspiration to all nephrologists in America that could change thousands of lives overnight by simply embracing this old paradigm. It was in fact the original protocol that started our venture into dialysis in the 1960's with 8 hour sessions, three times a week. Today, we call this a novel and new way to do dialysis.

It is time to inspire.  It is time for the example that Shad gave to all of us with renal disease to stand up and ask when your nephrologist and his colleagues will inspire America to return to the starting line of the 1960's and give all patients optimal, life restoring dialysis and not the usual, adequate dialysis that destroys the lives of those whose nephrologists withhold the precious waters of life from known dialysis protocols proven to save lives. Nephrologists are accountable.

DSEN salutes the example, courage and endurance of our champion Shad Ireland.

Light-Shielded Hemodialysis Or, Why my blood doesn't see the light

By Miriam Lippel Blum

As with any information you find on the internet do not do this experiment unless you have shown the research to your physician, discussed it thoroughly, and have his or her permission.

Hemodialysis (HD) is usually performed in bright, clinic rooms using transparent tubing to move blood from person to machine and back again. This means during every dialysis session the dialyzor’s blood is exposed to harsh fluorescent lighting. This adds up to more than 450 hours a year (156 treatments x 3-5 hours).  Uniquely during HD blood is exposed to light while it is in use, normally circulating blood is never exposed to light. This, I think, raises a question: does light have an impact on circulating blood?

Research done in Japan, and published in 2005 in the journal Clinical Chemistry, showed that light does have an impact. In Light-Shielded Hemodialysis Prevents Hypotension and Lipid Peroxidation by Inhibiting Nitric Oxide Production, Japanese researchers chronicle an experiment to measure the impact of light on circulating blood. The researchers simply covered the  dialysis tubing and measured changes in nitric oxide (NO) and lipid peroxidation.

Why are these two blood measures important? Together, both are involved in stimulating inflammation which can contribute to a host of problems, e.g. atherosclerosis, decreased epo response, amyloidosis. Individually, too much nitric oxide in the bloodstream can cause hypotension, while lipid peroxidation is a prime suspect for causing vascular damage.

In their experiment, the authors decreased the circulating blood's light exposure by covering the tubing with aluminum foil for the duration of the run. The authors found that the levels of NO were decreased and blood pressures stabilized. And they found the decreased NO inhibited plasma lipid peroxide generation. The implication of this research is that light is not good for blood that is in use. This routine light exposure during HD is likely contributing to dialyzor cardiovascular problems.

This research has had a big impact on me.  When I was on in-center HD, I had terrible intradialytic hypotension that was not related to fluid issues.  No matter how much saline or hypertonic was pumped into me, my blood pressures still would fall dramatically. Often my treatments had to be suspended because my BP was too low to continue.  I also developed severe cardiovascular disease within 9 months of starting in-center HD.  (I was on PD before that.)

My husband, always on the lookout for things that will help my health, happened to come across the Clinical Chemistry article.  I talked with my nephrologist and he agreed, why not see what would happen if we covered my tubing during treatment.  We had some hassles with the clinic but since my doctor wrote an order allowing it, the clinic eventually gave in, after making me address some safety issues (I had to make sure my coverings could be removed quickly in case the machine had an air alarm sound, and the pump needed to be visible).  So I made coverings with fabric and velcro so they could come off quickly and fashioned a little window for the blood pump with polarized plastic (like sunglasses) that would block light but still allow visibility.

The result was remarkable.  My blood pressures stabilized allowing me to have treatment runs uninterrupted by drastic blood pressure drops.  It worked so well that my nephrologist wanted to do some more research, unfortunately there was no funding.

Since that first effort I've fashioned reusable covers out double layers of heavyweight dark fabric. I use these covers along with strategically placed aluminum foil every run. I make sure to fully cover the tubing and dialyzer so that each time I hook up to NxStage I only briefly expose my blood to light. The only time my circulating blood is exposed is during the start and finish of treatments.

I recently talked to Dr. John Agar, about my light avoidance techniques and shared the Clinical Chemistry paper that led my husband and I down this road. Agar had never seen the research and found it very interesting.  He said that some current Australian research showed a heretofore unexplained lower level of NO in patients on nocturnal dialysis.  Perhaps this is because doing dialysis at night, in the dark, reduces the blood's light exposure. Light exposure that would be routine during conventional HD.  This may also be another reason why nocturnal HD seems to be so much better and less damaging to dialyzors.

There is much more research that needs to be done in this area and many questions to be answered.  For example: is there a particular wavelength of the light spectrum that causes the damage?  Or is all light equally damaging?  Does the source of the light matter i.e. fluorescent vs. incandescent vs sunshine?  Does it have to be direct light? Would indirect lighting solve the problem?

Research on blood light exposure could have implications for the provision of dialysis. That the cardiovascular damage seen in dialyzors could be mitigated by something as easy and noninvasive as preventing light exposure is something that should be seriously considered. Research may show that the blood tubing needs to provide shielding or the research may show that redesigning the unit's lighting would solve the problem.

Whatever the solution the dialysis industry needs to address this remarkably uncommented on issue. As for me I have seen (and felt) enough to continue my habit of covering the blood lines and dialyzer.

Dialysis & CKD Blog Report 7/28

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 7/25.   If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle Shad Ireland is just south of Richmond, VA, and almost done with his cross country ride; a US News & World Report reports the benefits of nocturnal HD but Bill writes that they got it wrong when they said it's not for people with cardiovascular disease (It actually puts less stress on the heart than conventional HD!); Peter critiques an article by Sally Satel that faults a Kaiser renal transplant team for delaying a living unrelated transplant until they were assured that the offer was not for financial gain; Peter compares inadequate hospital capacity to accommodate H1N1 victims when flu season arrives to Napoleon at Waterloo.(Hospitals are going to be overwhelmed, Folks, so you had better prepare.)
• Kaply, Inc. succumbed to some ice cream on a hot day but now resolves to diet again; lists some of her favorite foods.
• Toastiest thinks Virginia Foxx (R-NC) shouldn't be reelected because she insists all Americans have access to health care (What planet is she living on?); a lovely photo of his cat.
• The Life of a 20-Something With Lupus is almost done with school, got to reschedule exams so they wouldn't all be on one day.
• Becky Perry had a really good day getting a lot of chores done and feels good about her accomplishment; shares how she organizes her PD supplies for when she must do an exchange away from home. (Great tips, Becky!); a book review of Montana Rose by Mary Connealy.
• Life on dialysis ... and now life after my transplant! writes about her vacation and has photos; photos of niece Abigail enjoying a day at a farm.
• On the Road to a Cure shares the many different ways to follow the LFA online.
• I Am. Are you? has details and photos from a donor video shoot.
• Lupus and Humor posts a synopsis of the book Heartsearch: Towards Healing Lupus.
• Disability Prejudice And Civil Rights Watch Alison critiques the actions of a UVA hospital psych resident.
• Precious Bodily Fluids presents a case of a woman with hypernatremia that he evaluated with electrolyte free water, and explains the equations he uses.
• Renal Fellow Network explains the action and side effects of cyclosporine and tacrolimus; explains the use of magnesium in eclampsia and pre-eclampsia but warns about its toxic effects in people with CKD.
• Uremic Frost a study shows sodium bicarbonate supplementation can slow the progression of CKD and delay CKD5. Moreover, supplementation can increase nutritional parameters and improve the nutritional status of patients who suffer from CKD.
• Neophron's Senescence has a birthday video to celebrate his son's birthday.
• Kidney Notes - Exploring the Intersection of Medicine and Technology has a photo of the Brooklyn Bridge; a link to an article about doctors' information overload since so much new knowledge is now available via the internet, and some suggestions on how to deal with it. 
• Living with PKD Heather runs 5.2 miles.  (You go, Girl! And keep going!)
• The inner game of PKD stresses the importance of getting support from fellow PKD sufferers and extends an invitation to email him if you need support, he will respond.
• Nathan's PKD did well with all the cardiology tests and kidney tests and continues to do great post=transplant.
• My New (Transplanted) Kidney Allan's friends put on a fundraiser to help with transplant expense, he is moved to tears by a commemorative book they give him; the night before transplant he's calm and ready to go; transplant is now done, both Allan and Leon (his donor) doing well and the kidney is functioning but there may be some problem with placement.
• My Kidney - Stories about Life (and living!) with Bum Kidneys had a jump in creatinine and had tests to determine the cause but still awaits results to know if this is an acute rejection or not.(We are all sending good thoughts your way, Krissi, and hoping for the best.)

Hospital Capacity: The Silent H1N1 Waterloo

By Peter Laird, MD

Few realize that Napoleon was in an excellent position to actually win the battle that bears the title of his ultimate defeat and retreat into the his banishment on Elba. I fear that the many naysayers critical of the capacity of H1N1 to inflict serious health consequences throughout our population have failed to take into account an analogous counter attack by an inferior force just as the arrival of the Prussians changed the final outcome of the battle in favor of the British and their allies.

I have battled in the halls of our emergency departments over many years struggling to find beds for patients kept on gurneys in hallways for up to five days even with serious conditions such as heart attacks and pneumonia.  Patients on ventilators next to coughing asthma patients is now the normal day at any given American emergency room while hospital beds have become the prime commodity in hospital resource allocations. Patients are routinely assigned to chairs instead of beds while waiting to be seen by any ER physician available.  This is the status of America’s emergency departments and hospitals across our great land.  This was also the status during ordinary influenza months, and not with any extraordinarily impacted demand.  There is a hospital season and an off season for those of us who have trudged through the trenches of twenty first century medicine in our hospitals.

The reports on H1N1 continue to gather momentum with England reaching early panic levels this week as cases doubled in only seven days.  Primary care physicians throughout the UK are completely overwhelmed coping with the onslaught of illness during the usually quiet summer months.  It is not the usual season for an internist to don the vestiges of battle in the middle of blazing heat waves.  This is the time for our R&R when we rest and prepare for battle against viruses large and small, a fight we expect when when snow caps the distant mountains.  But things are different this year and there are storm clouds brewing all over America.

Just as Napoleon spent himself defending against the British and their allies, when the Prussians arrived, Napoleon had no resources left to meet the new challenge.  What no one is discussing in the media is the effect that the usual seasonal flu will have on our battle against H1N1 when it joins H1N1 on the American battle ground in mid winter.  America’s health infrastructure is smaller and in many ways less effective than it was in the 1970’s at its peak capacity.  In my town of Antelope Valley California, in the early 1990’s there were four active, full service hospitals and 200,000 residents. Now in 2009, we have only two active hospitals and over 400,000 residents.  

Resource rationing is the survival mode of all American ER’s today with many facing severe physician staffing shortages.  Patients who would have been admitted routinely even ten years ago are returned to their primary care physician for continuation of out patient care. However, with a severe primary care shortage, many patients languish in limbo between urgent care centers and overflowing emergency rooms.  In the best of days, many nations did not have the capacity to deal with the Prussians by themselves let alone all of Wellington’s amassed forces.  Today, many are speaking of the battle against H1N1 and they are starting to look past this battle already as if is a fait accompli with a little touch of Tamiflu for all, but they have yet to see the seasonal flu coming in just when all of the resources of the H1N1 battle have depleted all of the supplies usually available to handle the annual influenza season.

Take note that H1N1 is gathering steam globally during the internist’s off season.  There will be no rest this year or perhaps even next until enough people have developed a herd immunity from direct and uncontrollable infections raging rapidly through our schools, our churches, our stores, our government centers and lastly, our own homes.  There will not be enough Tamiflu or swine flu vaccinations to fight this battle not for only the few weeks of the usual flu season, but for the several months it will run roughshod through our civilization.  Any unusual added demand to our overloaded hospital capacity running at full utilization during the summer months is the silent Prussian attack not spoken of at all in the general media but it is lurking in the shadows nevertheless.  Yet, for those who work in the trenches of our emergency departments, we all know the sad truth.  It will be a long winter when it begins in the summer.

May God have mercy on us all.

When Altruism Isn't Moral isn't right

By Peter Laird, MD

When Altruism Isn't Moral is the provocative article by Sally Satel earlier this year relating the experience of an altruistic donor who was originally turned down by the Kaiser renal transplant team who were simply keeping their fiduciary and legal duty to assure that the offer was not for financial gain. Dr. Satel uses this as the basis for ascribing the initial rejection of the altruistic offer as evidence of immorality in allowing Sonny Davis to "languish" on dialysis.

In early 2006, Matt Thompson of San Jose, California, decided to give a kidney to Sonny Davis, a 65-year-old physicist living in nearby Menlo Park. Thompson was moved to donate after reading an impassioned plea from Davis’s wife, who had sent 140 letters to friends and relatives asking them to consider helping her husband. One of the recipients happened to be a colleague of Thompson’s, who passed it along, thinking Thompson just might heed the call. Sure enough, Thompson, a devout young Christian and former missionary, contacted the transplant program to volunteer.

But the transplant program at Kaiser Permanente of Northern California turned him down. Had Davis been a family member or a good friend, he would have been acceptable to the program. Thompson was frustrated and surprised, but he and Davis were determined to do the transplant. According to the San Jose Mercury News, they “knew they had to forge a bond that would assure Davis’ surgeons that Thompson was donating his kidney for the right reasons.” This meant, among other things, that Thompson would not profit financially. So the two developed a relationship and convinced the transplant program that no money was secretly being exchanged. On November 14, 2006, the transplant finally took place.

I am aware of California's aggressive penchant for prosecuting physicians for even the most minor infractions, let alone a serious possibility such as illicit black market organ sales.  Any physician in California that does not document appropriately their compliance with all rules and regulations is at the mercy of the California Medical Board should any inquiry take place.  Unlike our American constitutional rights of being innocent until proved guilty, physicians are overwhelmingly assumed to be guilty if the documents do not prove their innocence explicitly. In our business, if it was not written down and documented, the standard of evidence is that it is assumed to be in the states favor when an issue is in doubt. For doctors, not saying something is used as proof of guilt while in the American criminal jurisprudence, staying silent is not used against a defendant. American doctors do not operate under the same legal expectations that the ordinary citizens of America take for granted.

Understanding this, the example that Dr. Satel uses fails more when she reports that the transplant did take place before the end of the same calendar year it was requested. For many transplant systems, it takes several months of testing and appointments even without questioning the true motives of a living donor, thus there was likely no substantial delay in obtaining the transplant in question.

The recent headlines of a longstanding black market in organ sales operating in the United States is a shocking revelation that rescinds the State Department's long held disdain for the possibility of its existence.  Since the 1980's, such accusations were treated as simply urban legends and dismissed for any serious consideration by the Feds. Today, we are only beginning to learn of the full extent that illicit black market traffickers operate here in America.

Once again, Dr. Satel who is an actively practicing physician herself is apparently overlooking the obvious fiduciary and legal obligations that all physicians operate under when she attributes carefulness as an example of immorality.  I applaud the Kaiser physicians who were thorough enough to ask for proof of the authenticity of the altruistic donor's offer. This is in no manner an example of immorality or a failure of altruistic donation.  It is a supreme example of a system working well to benefit the patient and assure the integrity of the American transplant services.  Dr. Satel once again confuses the issues with this alleged example of immorality especially in light of the latest headlines on organ trafficking in the United States.

The fact remains that if all transplant surgeons were as diligent in checking into the authenticity of altruistic renal donations as the much unfairly maligned Kaiser physicians were who treated Sonny Davis, alleged thugs like the ac cussed Levy Izhak Rosenbaum would have long ago been put out of their dark business.  It is quite hard to stand firm against corruption and in doing so, a simple request to offer proof of the validity of a rare offer is proper application of medical ethics.  My complements to the Kaiser physicians who requested, accepted and amended the offer of a kidney by Matt Thompson. This is a wonderful story of the system working well, it is not and was not an example of Altruism being immoral.

It is my personal opinion that Dr. Satel should have informed her readers of the special ethical and legal obligations transplant surgeons face before maligning unfairly the Kaiser transplant team in question. This does great disservice to the cause of increasing renal donation that Dr. Satel so actively promotes. She further does not report on the usual waiting times between request for altruistic renal donation and actual donation. It is my personal opinion that any medical doctor who writes and advocates for unusual and provocative medical solutions is acting in an immoral manner when they subvert the universal fiduciary obligations all doctors act by according to the laws and ethics of the state and country that they practice.

I stand in support of the Kaiser transplant team and wish that Dr. Satel would spend more time educating the lay people that support her views about the duties and obligations that led the Kaiser surgeons to act in the manner in which they did. Calling this example of altruism immoral isn't right. It is my opinion that this accusation of immorality against the Kaiser transplant team in question is even more egregious when we understand that Dr. Satel is likewise the beneficiary of an altruistic donation that took her months to arrange with one donor that later refused their original offer to her. Sometimes, the test of time is the only true test of a true altruistic offer. Once again, Dr. Satel more than anyone I know should be aware of this simple fact and reflect that in her writings.

(For further information on this issue see DSEN Goes To College)

US News & World Report article reports benefits of nocturnal hemodialysis

By Bill Peckham

Okarol at IHD links to an article in US News & World Report For Some Kidney Patients, Home Dialysis Is Better Evidence suggests nighttime treatment yields better results. My experience matches the results reported in the article which is generally very good. The article does a good job backing most statements with references to current research. However, starting with the title it is clear that the writers at US News aren't completely sold on the nocturnal option.

"For Some Kidney Patients ..." why just for some? In the article they claim in regard to nocturnal home hemodialysis:

Experts say it's not for everyone, particularly people with other serious medical problems, such as cardiovascular disease.

What experts say that? What study showed that?

If anything frequent nocturnal home hemodialysis should be the first choice of people with cardiovascular disease and CKD5. One of the ways nocturnal hemodialysis is healthier is that is let's you remove fluid slowly, this combined with higher frequencies makes the modality the most heart friendly form of dialysis. With frequent nocturnal hemodialysis fluid buildup/rapid removal does not routinely strain the heart, which can happen with conventional dialysis. Change that sentence to "Experts say it is for everyone, particularly people with other serious medical problems, such as cardiovascular disease" and you would have an A+ article.

Shad Ireland is closing in on Washington DC

By Bill Peckham

After over 3,000 miles of riding Shad has made it through North Carolina:

According to the GPS tracker on Shad's What Inspires You Tour website he is just a few miles south of Richmond Virginia. He's on the home stretch and should be completing his epic ride soon.

Dialysis & CKD Blog Report 7/25

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 7/22.   If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle Bill writes about the screening of a great short documentary,  Decision to Donate, and the campaign associated with it;  Denny's has dangerously salty food and  a lawsuit has been filed against them; Bill recommends listening to the KidneyTalk podcast on the Medicare reimbursement changes.
  
• Kamal Shah's Blog Kamal applauds a court decision that directed the state government to stop funding religious pilgrimages; his phosphorus is still too low despite adding phosphate to his dialysate, he wonders if he can add more; is challenged to an idli eating contest and feels sure he'll win but is bested by a friend.
• Kaply, Inc. Tracy lists things she is extremely annoyed with; is off the painkillers which frees up her colon, so to speak, and life is slowly returning to a normal routine.
•  The Life of a 20-Something With Lupus need s new computer and consults a professional for advice.
• Becky Perry shares the first chapter of Love's Rescue by Tammy Barley; lists five things that make her happy, including a successful transplant evaluation. (That makes all of us happy, too!)
•  Life on dialysis ... and now life after my transplant! recommends a website that lets you thank important people in your life and sets up a page for her donor campaign with them.
• On the Road to a Cure has a link to a Blog TalkRadio show where LFA health educator Dawn Isherwood discussed lupus.
• Kevin’s Blog got a flareup of the CMV virus from his transplant and needed Cytogam, an insurance problem almost nixed the treatment but prayer and patience got him where he needed to be.
• Bud's Ramblings Paperwork complete, Bud awaits delivery of his new Jazzy electric wheelchair and ponders what to do with his old chair.
• Disability Prejudice And Civil Rights Watch links to story about the Va.Tech gunman's medical records that were just located; information about Patient Safety Day and would award one local  hospital five stars and UVA zero; has a new page on top for sharing stories of harm or death  caused by psychotropic drugs or psychiatric hospitalizations; shows how laws in VA give doctors too much power and compromise safety and rights.
  
• Precious Bodily Fluids discusses care for a patient with the lowest creatinine he's every seen;
• Renal Fellow Network shares new data regarding the causes for CKD in African-Americans; a study concludes that half of kidney transplant candidates older than 60 Years now placed on the waiting list will die before receiving a Deceased-Donor Transplant; a list of some commonly-used Kidney Transplant Lingo & Acronyms; a ridiculous music video from the Intern Boys.
  
• Uremic Frost has a ChefMD video about foods that can help lower blood pressure.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) struggles with insurance issues regarding dialysis and transplantation.
• Mid-life ramblings Dianne has her home inspection for Home HD and starts training next week, a month earlier than expected. (Best wishes for a successful training and transition to home.)
• The inner game of PKD explains while outer structure (routine) is important in handling PKD, inner structure (attitude) is just as important, if not more.
• DailyHemo - Home Dialysis Advocates New Videos: Bruce Explains The Goodness of Home Dialysis; Dr. Provenzano Explains Why Frequent Dialysis is Better; Rreducing Potassium in Vegetables; Big Advance for  Dialysis Patients; What is Healthcare Reform and Why Do We Need It?; Patient and Family Thank Bridge of Life -Davita Medical Missions in the Philippines; National Medical Report: Kidney Disease.
• Encompass Network Partners information on peripheral arterial disease.
• Kidney Diet Tips discusses the research regarding baking soda and kidney disease.
• KIDNEYBLOG has a video and information on preparing for emergencies.

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.

Denny's piles on the salt

By Bill Peckham

RenalWeb links to a WebMD article about a lawsuit (PDF link) filed by the nonprofit Center for Science in the Public Interest:

Noting that the CDC recommends most adults get no more than 1,500 milligrams per day of sodium, Jacobson said that certain Denny's dishes contain far more sodium, such as the 2,580 milligrams of sodium in the Moons Over My Hammy ham, egg, and cheese sandwich.

That is a lot of sodium, it makes Devilled Sausages & Creamy Garlic Mash look healthy.

Denny's responded that they post their menu's nutritional information on their website (PDF link) and further:

Denny's believes the lawsuit filed by CSPI is frivolous and without merit, and the company will fight it aggressively in court. With hundreds of items on the menu, Denny's offers a wide variety of choices for consumers with different lifestyle, understanding that many have special dietary needs. In June 2009, the company launched Better for You items, allowing guests to replace favorites with lower-sodium and fat alternatives. Additionally, earlier this month, Denny's launched a Better for You kids menu.

That seems fair. You don't have to order the Moons Over My Hammy. Can you really say their whole menu is too salty?

Yes as a matter of fact, you can say that the Denny's menu is dangerously salty. An easy way to see this is to consider the mgs of sodium per calorie. Adults should get 1,500 to 2,500 calories a day (depending on how hard your day is) so as a general rule your food should have about 1mg of sodium per calorie. The Moons Over My Hammy breakfast provides just 780 calories for nearly two days worth of salt with lunch and dinner still to come.

Aside from soda and ice cream based deserts almost all of items Denny's menu have 2 to 3 mg of sodium per calorie. You would be hard pressed to eat a meal without ingesting your daily limit of sodium. Stray from some of the skewers and you're pretty much guaranteed to be over salted. Eating out should not be such a health risk.

Decision to Donate Washington kicks off with film screening

By Bill Peckham

Tonight I went to a film screening that launched a new campaign - Decision to Donate Washington. Decision to Donate Washington is an effort to increase organ donation in WA and MT. They are trying to get 100,000 clicks (one for each person on the organ waiting lists), so click here to find out more about the Decision to Donate Movement. If you're a WA or MT resident you can register to be an organ donor, but for everyone they have suggestions on how you can increase organ donation awareness. And you can find information on being a living donor.

The movie screening was of a documentary featuring John, who decides to give a kidney to his long time friend Larry, who has PKD. The movie is great. It's produced by Seattle's Massimo Backus and Alex Rubin, Masimo is John's son. I thought Masimo and Alex did a great job telling the story of John and Larry. Decision to Donate can be viewed online on the film's website.

I took the film's message to be that you too can be an altruistic organ donor, that it feels good to give someone a kidney, that all you have match is blood type these days and that live donations work better for the recipient. Check out the film (it's an entertaining 17 minutes) and then check out the Movement - Decision to Donate Washington.

Dialysis & CKD Blog Report 7/22

By Miriam Lippel Blum

An extremely hot few days in the blogging dialysphere, especially here in DSEN.  A special treat to enjoy is Shad Ireland's blog right under the DSEN blog -- definitely worth looking at for inspiration to keep living and never let dialysis define you. Here are the CKD related blogs updated since my update on 7/19.   If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle Bill disputes Postrel's idea that an organ market is a  cure for conventional dialysis; Peter challenges Satel's ideas about compensating donors and discusses how an organ market abuses the poor; Peter reports that H1N1 is more like the deadly 1918 pandemic flu; Medicare's proposal for bundling of dialysis expenses is coming soon, here are things to be aware of, ask questions about, and write letters of concern about; Bill shares the CDC report on H1N1 causing acute renal failure and strongly charges the CDC to be more forthcoming with important information relevant to the renal community; Peter tells how to prevent H1N11 at home and at work (Keep your hands away from your face, people!); Patient Safety Day, July 25, 6:00 PM. moment of silence and candlelight vigil;   Bill  wants the CDC to  get more specific about how they define "Chronic Renal Disease" as it applies to the statistics of H1N1 victims hospitalized, they say 8% are.  The renal community needs to know the true scale of the danger it faces; the amazing and inspirational Shad Ireland is almost done with his ride across the US. (A true role model!  Thank you, Shad, for giving hope, showing how important exercise is and what a dialyzor is capable of.  Take a look at his blog below.)
• Shad Ireland's What Inspires You Tour  Wonderful photos of Shad biking across America, meeting with dialyzors and staff in clinics and out riding with them.  Alabama was hot and humid but music smoothed the way; he took a ferry to Florida, rode 23 miles and loves his bike!
  
• Kamal Shah's Blog Kamal wonders over the delays in a capitol murder case; due to nocturnal dialysis his phosphorus is too low so he is 'going to start adding a phospate solution to his dialysate like they do in Australia. (Good luck with this experiment, Kamal.)
• Kaply, Inc. had a migraine, is exhausted and feeling miserable and her dialysis time was changed without notice. (We hope you feel better soon.)
• poetry on dialysis continued a vivid description (in Spanish) of a hallucination he experienced while running by a dilapidated house where a wartime massacre occurred. (Terrifying!)
• Toastiest watched Cronkite coverage, golf, dislikes Twitter but got sucked into Mafia Wars on FaceBook; a video with a woman ranting about President Obama's birth certificate, Toastie hates politics because of this kind of thing.
• The Life of a 20-Something With Lupus is worried about having lupus flare up but is going to school anyway, organizes group project to raise money for lupus.
• Becky Perry shares a yummy recipe for White Chocolate Chip Spice Cookies; shares a song she heard while driving to her transplant evaluation.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease BK Virus test is high, off CellCept entirely for now and taking Cipro to inhibit the virus.
• On the Road to a Cure A study showed that lupus patients who were treated with BENLYSTA had improvement in overall disease activity without clinically significant flare-ups in one or more isolated organs when compared to patients who received the placebo. The patients receiving BENLYSTA also were able to reduce their intake of steroid medications. (Great  news for lupus sufferers!); Amanda Davenport, a sous chef with lupus, will compete this season on Hell's Kitchen, on Fox Television, and will be blogging on the LFA site.
• I Am. Are you? has a poignant letter from a young wife whose husband died unexpectedly and became an organ donor; had a photo shoot and shares some of the pictures.
• Chronic Chick Talk shares a photo of her Christmas English Trifle and a link to a blog hop; a tragic story about the importance of consulting your doctor in a timely manner.
• Bud's Ramblings is going to get an electric wheelchair from The Scooter Store (No speeding in the hallways, Bud!)
• Disability Prejudice And Civil Rights Watch has a Twitter  link to follow the action of amazing ADAPT activists; Alison announces she will be blogging about her bad experiences in '96-97 at UVA.
• Precious Bodily Fluids his med students mostly have iPhones, links to his lecture on IV Fluids and Sodium; links to lecture on Electrolyte Free Water clearance, and tea and toast syndrome; a man who didn't know he had renal failure comes in with a creatinine of 38 - the highest Dr. Topf has ever seen.
• Renal Fellow Network managing a GI Bleed in patients with CKD/ESRD; why Sensipar might be good for PKD; important caveats to the use of the renal ultrasound to effectively rule-in or rule-out obstructive nephropathy.
• Uremic Frost informs about Patient Safety Day, as well as, the award bestowed on Lucian Leape, MD,  father of the modern patient safety movement.
• Renal tsar's blog  Patient Transport results are available; using email alerts to identify MRSA trends.
• Lemonade and Kidneys shares photos of the bounty that came from her garden (I wish my thumb were as green.)
• The inner game of PKD describes the components of what his definition of support includes.
• I need a kidney Jason's transplant is failing after four years as his daughter is ready to be born , he reflects on what he accomplished in those years without dialysis and hopes for another transplant. (So sad to hear that, Jason, you did amazing things. Look into home treatment if you can  -- PD or home HD. You can have a better life than on in-center.)
• Encompass Network Partners Understanding Peripheral Vascular Disease; you can now follow Encompass on Twitter; Are you at risk for Peripheral Arterial Disease?; a report on a surgical workshop held in India  for Peripheral Vascular Disease that taught new techniques for saving limbs.
• Kidney Community Emergency Response The new issue of "WELCOME TO DISASTERVILLE" has been posted to the KCER website, September is National Preparedness Month FEMA has an educational plan urging people to prepare and get involved in community planning.
• Libre Clothing had a productive meeting with personnel at Children's Hospital in Columbus, Ohio; would like input from dialyzors and have a survey you can fill out and email or post in the comment section.
• Renal BizBlog The technology for sorbent dialysis was discovered by NASA contractors involved in preparing for the moon launch in the late 1960s (Far out!); reports that Home Dialysis Central has posted on its Web site a Q&A to help dialysis patients better understand the impact of bundled payments and their role in the Medicare decision-making process. (You can also find it here.)
• Bridge of Life The new clinic in the Philippines is up and running, yesterday they dialyzed 18 patients.

Shad Ireland Races Toward Finish

By Peter Laird, MD

Shad Ireland is the first dialysis patient to ever compete and complete a full ironman competition. He is now within days of becoming the first dialysis patient to ride across the entire United States. Shad is now nearing the Virginia border in his journey that will end in Washington D.C.

Shad has traveled in this life from the doorstep of imminent death to the halls of health and achievement. Shad remains an inspiration to me as a fellow dialyzor and in my own walk in the steps that all dialysis patients face, I have found that adherence to exercise gives me my best days of feeling well. For those that continue to deny the gift of life that dialysis truly is, Shad stands tall as one of our greatest examples of human will in overcoming the disability of chronic kidney disease.

I continue to salute Shad Ireland and his quest to bring to light the full potential of a life lived well on dialysis. May God speed your final leg of this remarkable journey.

CDC reports "Chronic Renal Disease" present in 8% of hospitalized H1N1 cases

By Bill Peckham

The Centers for Disease Control posted the presentation Influenza Surveillance (PDF link). It presents details on 268 H1N1 pandemic influenza hospitalizations through June 2009. To the right is a screen capture of page 21 (click image to enlarge) which shows demographic information for the 268 hospitalizations. (The file is marked "Not For Further Distribution" but it is critically important that the CDC makes this information widely available in a timely manner. I was glad to see it posted) The Median age of the patients is 22 years old. Among the entire cohort the ages range from 21 days to 86 years.

Page 22 breaks down the underlying medical conditions among the 268 patients. One important point is that 29% of those hospitalized because of H1N1 had no underlying health conditions. Young healthy people are not normally sent to the hospital by seasonal flu. H1N1 is much worse than seasonal flu.  8% of the 268 cases are reported to have "Chronic Renal Disease" as an underlying condition. 8% is a tremendous problem if "Chronic Renal Disease" means "CKD5; on dialysis".  To evaluate the 8% number we need to know what illnesses are covered by the term "Chronic Renal Disease".

Unfortunately there is no easy way to know what the CDC means by "Chronic Renal Disease". This document from the CDC Swine Flu (H1N1) Case Report Form – Standardized Vocabulary (PDF Link) includes the CDC's form that collects the H1N1 epidemiology/surveillance data we see in the Influenza Surveillance presentation. On page 5 you can see where on the CDC's Swine Influenza Case Report Form you would circle 'yes' or 'no' to indicate "Kidney Disease".

Is "Kidney Disease" the same as "Chronic Renal Disease"? I don't know. To define "Kidney Disease" you look in the Swine Flu (H1N1) Standardized Vocabulary/Section C: Medical History (on page 12 of the document):

Kidney disease
Synonyms: Renal disease, Nephropathy, Nephrosis, Disease of Kidney

When you click the link you go to an extensive list of kidney problems. Between this list which includes many acute kidney diseases such as "Kidney Stones" and the language inconsistency itself, it is very hard to know how to interpret what "Chronic Renal Disease" is meant to communicate. Unless we know which diseases go in the "Chronic Renal Disease" bucket, we can't know if they're disproportionately represented. We need to know how many people, in a random sample of the population, we would expect to check the "Chronic Renal Disease" box.

If 8% of the general population has one or the other kidney disease covered by the term "Chronic Renal Disease" then we could likewise expect at least 8% of H1N1 hospitalizations to have "Chronic Renal Disease" as an underlying condition. We could then prepare knowing that "Chronic Renal Disease" does not appear to be an additional risk. However, if "Chronic Renal Disease" means "on dialysis" then we know we have a bigger problem. Dialyzors are just a bit over .1% of the population.

We need complete and timely epidemiology/surveillance data on H1N1 hospitalizations and fatalities. We need to know the age distribution of those with each underlying illness designation. If only the adults (19 and older) had "Chronic Renal Disease" as an underlying condition then the percent of people, among hospitalized adults with "Chronic Renal Disease" as an underlying condition is more like 15% (141 adults in sample, 21 with "Chronic Renal Disease"). If "Chronic Renal Disease" means that a person is "CKD5; on dialysis" then that would represent about a 2 magnitude increase in a risk of H1N1 hospitalization. The CDC has this data; the dialysis community deserves clarity.

The CDC has Epidemiology/Surveillance partners across the US. Some are HMOs that have extensive Personal Medical Histories available for H1N1 hospitalizations and H1N1 fatalities (it could be HMOs have their own Case Report Form that uses the term "Chronic Renal Disease" (but what does it mean?)). The CDC has a public health obligation to report the know risk factors for severe H1N1 illness clearly and transparently. Getting this data squared away at some conference a year from now isn't going to help.

Patient Safety Day July 25 - a moment of silence and candlelight vigil

By Bill Peckham

Check out the web site and there is a press release:

Patient Safety Day is held on July 25th annually. Patients, families, healthcare providers and consumer groups join together in a moment of silence and candlelight vigil at noon and 6:00 PM; at home, work or wherever you are - in memory of patients and families who have lost their life or quality of life due to medical errors - and in tribute to those who work to improve the quality and safety of healthcare for future patients. The event now draws participants from more than 40 states and numerous countries.

This is a good time to reflect on the importance of involving yourself in your ongoing care.

Preventing H1N1 Flu in the Home and at Work

By Peter Laird, MD

Individual, often simple, measures are very important in the prevention of many diseases including communicable diseases such as H1N1 pandemic flu  (Swine Flu).  The CDC has an excellent resource on the H1N1 pandemic and how to prevent exposure in the home and in family situations.

What can I do to protect myself from getting sick?

There is no vaccine available right now to protect against novel H1N1 virus. There are everyday actions that can help prevent the spread of germs that cause respiratory illnesses like influenza.

Take these everyday steps to protect your health:

• Cover your nose and mouth with a tissue when you cough or sneeze. Throw the tissue in the trash after you use it.
• Wash your hands often with soap and water, especially after you cough or sneeze. Alcohol-based hand cleaners are also effective.
• Avoid touching your eyes, nose or mouth. Germs spread this way.
• Try to avoid close contact with sick people.
• Stay home if you are sick for 7 days after your symptoms begin or until you have been symptom-free for 24 hours, whichever is longer. This is to keep from infecting others and spreading the virus further.

The single most important avoidance technique is to learn to not to touch your mouth, nose and eyes with your hands after touching surfaces that may have been contaminated.  Standing over six feet away from other people helps to prevent transmission of the virus by respiratory droplets from sneezing or coughing.  Bill has recommended purchasing a large supply of N95 masks prior to the onset of widespread disease when these supplies will be in high demand.  Other supplies that will likely be unavailable at the time of widespread illness are hand sanitizers and hand wipes.  With only six weeks left before the start of school, allCKD patients should review the basic emergency preparedness handouts and secure the specific supplies you may want for flu avoidance (and the sort of disasters Mother Nature unexpectedly provides).

Lastly, dialysis patients who fall victim to the H1N1 virus still need to continue regular dialysis to overcome this illness. Dialyzors should not be expected to stay at home for seven days.  The Northwest Kidney Centers in Seattle is one of the few dialysis providers that has worked directly with their local emergency planning agency. NKC has prepared supplies and medications for all of their patients and staff to be able to continue the provision of dialysis for those they care for.  Bill has devoted a substantial amount of his personal and professional time in preparing his own center as well as sounding the alarm for the specific needs of dialysis patients nationwide long before we ever heard of the H1N1 2009 pandemic flu.  Time is short for dialysis units to make preparations if they haven't already done so, but there still are many things that can be done that will save many lives even at this late date.

Acute renal failure seen in severe H1N1 cases

By Bill Peckham

The CDC's Morbidity and Mortality Weekly Report for July 17th is online. Titled Intensive-Care Patients With Severe Novel Influenza A (H1N1) Virus Infection --- Michigan, June 2009 it reports clinical information on 10 hospitalized H1N1 patients admitted to the surgical intensive care unit (SICU) at the University of Michigan Health System.

These 10 patients all got sick in late May or early June. They range in age between 21 and 53.The report notes that nine of the patients had a BMI over 30; of those seven had a BMI over 40.

All 10 patients required initial advanced mechanical ventilation (high-frequency oscillatory or bilevel ventilation with high mean airway pressures [32--55 cm H20]). Two patients required veno-venous ECMO support. Six required continuous renal replacement therapy (CRRT) for acute renal failure. Upon transfer to the SICU, five had elevated white blood cell counts, and one had a decreased white blood cell count. The median white blood cell count (WBC) was 9,500 cells/mm3 (range: 3,700--19,700 cells/mm3; normal: 4,000--10,000 cells/mm3). All ten patients had elevated aspartate transaminase (AST) levels. The median AST level was 83.5 IU/L (range: 41--109 IU/L; normal: 8--30 IU/L). Six of the nine patients who were tested had elevated creatine phosphokinase (CPK) levels. The median CPK level was 999 IU/L (range: 51-- 6,572 IU/L; normal: 38--240 IU/L). Nine patients were admitted to the SICU with MODS, and nine manifested septic shock requiring vasopressor support. All 10 patients required tracheostomy.

The H1N1 pandemic influenza virus is not at all like the seasonal influenza virus. Seasonal influenza does not normally cause ARF in people in the prime of life. Of particular worry is that this happening outside of the normal seasonal flu season.

Acute dialysis providers should plan on increased demand for acute dialysis services. The CDC should release clinical details of severe H1N1 related illness so that trends relevant to the provision of dialysis (both acute and chronic) can be identified. The renal industry needs timely data from the CDC to inform preparations.

Q&A to prepare for the implementation of Medicare's expanded dialysis payment bundle

By Rich Berkowitz, Bill Peckham and Dori Schatell

Dori, Rich and I have been participating with a diverse group of Home Dialysis advocates for a few months to prepare information for dialyzors so that we can all present feedback on the pending changes to dialysis reimbursement. I think the letter below stands on its own. We all expect that CMS will be publishing a notice this summer which then opens a 60 day comment period. This will be a chance for dialysis advocates to provide feedback

Start with this letter and then follow the link at the bottom of this post to read the Q&A. DSEN will be tracking this issue for the foreseeable future. Stay tuned for updates as this develops.

Dear Patient/Care Partner,

As you may know, the Centers for Medicare & Medicaid Services (CMS) is now working on making changes to the way dialysis is paid for. Congress passed a law last summer that requires Medicare to make a plan to improve the quality of dialysis care and reduce costs of dialysis treatment.

This will have a direct impact on YOUR dialysis. It is vital for you to stay informed and get involved to ensure that your treatment will not be affected.

While details of the new bundle are not yet known, the issues that could affect your treatment include:

• Whether the cost of dialysis will be looked at per treatment, per week, or per month
• Which lab tests, drugs, and other services will be part of the payment bundle
• Whether the cost of home training will stay outside of the payment bundle
• Whether Medicare will still allow providers to be paid for treatments beyond three per week based on medical reasons

We expect the new draft plan for dialysis to come out this summer. Medicare, which pays for most people's dialysis, wants to hear from YOU to help them finalize the plan.

Congress and the leaders in Medicare are not experts on the needs of people with kidney disease. YOU are the expert and YOUR input can give these leaders the chance to make better-informed decisions.

To help you better understand the policy issues that can affect people with kidney failure, we have written the Q&A. We hope this will help you to get involved and share your stories and ideas. After the proposal is released, we will have a follow-up letter with next steps.

Thank you for your efforts to ensure that the needs of people on dialysis are addressed in the new bill.

Sincerely,
Dialysis from the Sharp End of the Needle
Medical Education Institute, Inc. (Home Dialysis Central)
NxStageUsers

Click here to read the QA

H1N1 Flu (Swine Flu) Continues to Spread Rapidly

By Peter Laird, MD

Seasonal flu viruses have an expected peak and waning period during their course. While practicing internal medicine at Kaiser, we would have weekly updates when the flu was first detected. These reports continued throughout the course of the seasonal flu season which was very useful to help us know when to use antiviral medications since the other common respiratory viruses often had different timing than the flu. However, the H1N1 pandemic influenza virus is not behaving like an ordinary seasonal flu viruses which essentially disappear during the summer months. H1N1 continues to increase both globally and in the US:

We've seen it in camps and military units," Dr. Schuchat said. "I'm expecting when school reopens and kids are all back together, in some communities at least we may see an increase."

The number of confirmed U.S. infections is now 40,617, with 263 deaths, the CDC said Friday. But the agency believes that more than one million people have been infected and weren't tested for the virus or didn't visit a doctor. The disease has become so widespread that the agency will probably suspend tallying individual case counts within the next few weeks and focus instead on tracking clusters, severe cases, deaths and other unusual events -- a more traditional approach to tracking diseases, Dr. Schuchat said.

Other sources using mathematical modeling based on the spread of the 1918 swine flu pandemic are predicting worsening outbreaks in the fall (note S-OIV (Swine Origin Influenza Virus) is used in some referenced articles in place of H1N1. DSEN will use the CDC's H1N1 nomenclature outside of direct quotes) :

Based on patterns of the 1918 influenza, models indicate that the H1N1 virus could become more severe in the fall. "Such models raise concern regarding the potential for the news [sic] S-OIV  strain to cause serious epidemics in the near term in the southern hemisphere: South American countries, Australia and New Zealand will enter their upcoming influenza season without a vaccine against this strain," write Dr. David Fisman and coauthors.

That message is not being heard here in the US where we too will enter the flu season without a vaccine.

The low case fatality rate (CFR) and initial mild symptoms in the majority of those infected early in the US has led to complacency among many in the health care field. Yet there are features of this current pandemic that are already showing a tragic similarity to the 1918 flu pandemic. First, pregnant women and infant children have had severe reactions to the H1N1 pandemic influenza virus during it's first two months of spread:

Human infections with a novel influenza A (H1N1) virus that is easily transmissible among humans were first identified in April 2009. Severe illnesses among pregnant woman and infants have been reported in this outbreak although the epidemiology and spectrum of illness among pregnant woman and infants are not fully understood at this time and are under investigation.

Secondly, otherwise young and healthy adults appear to be at a heightened risk compared to the usual mild symptoms this population traditionally experiences with the seasonal influenza virus. NEJM recently published an update on the first cases of H1N1 in Mexico:

This case series of the first 18 patients hospitalized in Mexico City with S-OIV infection documents the clinical findings of severe illness or death associated with S-OIV infection that were seen during the beginning of the S-OIV pandemic. The patients, most of them previously healthy, had an influenza-like illness that progressed during a period of 5 to 7 days, had pneumonia, and had findings during the first day of hospital admission that fulfilled the criteria of acute lung injury or the acute respiratory distress syndrome.¹² Seven patients died, all from multiorgan system failure.

It is still too early to know how the H1N1 pandemic influenza virus will affect renal patients here in America, but it is likely that we will have a very long and difficult winter especially if the low CFR of 0.4% increases significantly.

Australia and the other nations down under are heading into their own flu season with out the benefit of a vaccine that will not be available at best until mid October. For those in America with chronic medical conditions, it is time to take advantage of the last six weeks before the start of school to become better prepared. Dialysis units with the usual close proximity between staff and patients are at a particularly high risk for the spread of any infectious diseases, especially those that are spread by the respiratory system. Bill has spent the last several years working at the local and state level improving pandemic planning. Unfortunately, few communities have had this benefit. We are now in a tight race with time before we test America's nationwide pandemic preparedness.

Reasoning With Satel: Rich Man’s Disease, Poor Man’s Plight

By Peter Laird, MD

Sally Satel is a medical doctor who also suffers from CKD-5 which she chose to treat with an altruistic living donor renal transplant from Virginia Postrel. Likewise, I am a medical doctor suffering from CKD-5 but we differ in that I chose to treat my CKD-5 with home daily dialysis.  Both treatment options entail risks and benefits but the key is that both transplant and dialysis (optimal or otherwise) are treatments, not cures. Neither of us shall see a complete cure unless we one day have a medical breakthrough that allows successful transplants without the need of immunosuppression or some other yet to be imagined technology.

There are many like myself and Bill who have seen an improved lifestyle from daily home dialysis. It likewise is not a cure, but simply another renal replacement option. A lot has been written on how to increase altruistic donations which is a worthy goal but the most surprising statements that I have noted come from the literature on creating an organ market to eliminate the wait list that plagues Americans waiting for a renal transplant.  

The most troublesome argument that I have encountered among those that promote an American market based organ procurement system is their denigration of the altruistic renal donation system. This is followed by their advocacy of replacing the current framework with a new ethical paradigm where altruism is called immoral and what has long been considered immoral is now called moral in regards to payment for organs. The unspoken and unwritten assumption underlying these proposed new ethics is the ascription of an implied right, an entitlement to someone else’s kidneys. They contend that morally they have a new right to healthy kidneys, a right to healthy kidneys as a commodity to be purchased like any other commodity:

The woeful inadequacy of our nation’s transplant policy is due to its reliance on “altruism.” According to the guiding narrative of the transplant establishment, organs should be a “gift of life,” an act of selfless generosity. It’s a beautiful sentiment, no question. In fact, I, myself, am a poster girl for altruism. In 2006, I received a kidney from a (formerly) casual friend who heard secondhand about my need for a transplant. In her act, there was everything for me to gain, and, frankly, not much for her. My glorious donor was moved by empathy and altruism as purely as anyone could ever be.

Yet, it is lethally obvious that altruism is not a valid basis for transplant policy. If we keep thinking of organs solely as gifts, there will never be enough of them. We need to encourage more living and posthumous donation through rewards, say, tax credits or lifetime health insurance.

Changing our current altruistic based organ procurement system for a commodity based system in my mind is predicated on an unspoken right and claim to other people’s organs when they are considered anything but a gift.  Perhaps this sense of entitlement is a vestige of our colonial past where the rich man was unduly entitled without regard to the entitlement's cost to the poor man. Today, renal disease is a disease of the rich nations that can afford sustained renal replacement options and it is the plight of the poor man that simply dies from their illness in nations that lack the basic medical treatment options we have come to think of as a right and an entitlement.

In recent years, long wait lists have led to illicit and illegal organ markets in China, Pakistan, India and the Philippines.  Once again, the burden of the rich is placed on the poor.  Many have spoken out against these markets but some who advocate for a market based organ procurement system here in America fail to understand the underlying inequality that a market based system will inevitably lead to based on wealth, privilege and poverty. Satel even considered becoming a transplant tourist herself:

In desperation, I briefly considered going overseas to become a "transplant tourist." I heard of people needing kidneys who turned to advertising: kidney-wanted ads, billboards and Internet sites.

Satel is paradoxically compelled to protect those that she seeks to enroll in vending their organs by reducing the rewards to intangible compensations such as health insurance, retirement payments or other such payment in kind, but she does not support direct cash payments which could lead to undue economic coercion of the socially disadvantaged that she "in desperation" would have willingly done herself.

Many people are uneasy about offering lump-sum cash payments. A solution is to provide in-kind rewards, such as a down payment on a house, a contribution to a retirement fund or lifetime health insurance, so the program would not be attractive to people who might otherwise rush to donate on the promise of a large sum of instant cash.

Satel is already subverting her entire arguments to those that are deprived of retirement and health insurance which is indeed the financially challenged more so than those that have wealth and privilege. Once again, attributing these rewards as an inducement to vend your organs implies a class of people that are impoverished compared to the wealthy who would not find such inducements any value in considering whether to vend a kidney or not.

In 1863, America instituted conscription to support the North's war effort but allowed another person to take their place by payment or substitution:

These two practices were major points of contention among the general public and led directly to the slogan "rich man's war, poor man's fight."

In my opinion, Satel's bizarre logic to support in kind rewards instead of cash incentives for the immoral act of making organs simply another commodity is not a compelling argument. Satel further fails to inform her readers of the alternative daily dialysis treatment options which is in violation of the ethics of informed consent that she must adhere to as a medical doctor.  As a physician, I contend that making an ethical argument to subvert our current altruism based organ donation model without informing her readers that daily dialysis has an equivalent survival to cadaveric transplant is unethical and immoral.  It is my opinion that the commodity system that Satel has promoted aggressively for several years is nothing more than the poor man's plight for a rich man's disease.  

We don't need an organ market to cure conventional dialysis

By Bill Peckham

This organ market issue was not one I imagined covering when I started this blog but looking through just the 50+ DSEN posts categorized "Transplant" it turns out that we've written a number of relevant posts (and there are probably others since my post categorizing is inconsistent). So what is it about DSEN that attracts people who don't think paying for kidneys is a good idea? And can I tie that in to why I think Postrel misappropriated Halcomb's views?

I think it is because DSEN authors have all experienced unconventional, healthier doses of dialysis. We understand that renal transplants cure conventional dialysis. That is how Postrel and others have presented the case for an organ market, as compared to conventional dialysis. The cost savings are compared to conventional dialysis. Transplant's increased sense of well being is as compared to conventional dialysis. The mortality advantage is as compared to conventional dialysis. It is not a cure for Chronic Kidney Disease, it's just another treatment for CKD; its a cure for conventional dialysis.

The problem as Postrel sees it is how do we improve the lives of the 80,000 people waiting for a kidney who either face or are languishing on conventional dialysis? Oh and save Medicare money. Of course the first thing we at DSEN all say is hey! What about the hundreds of thousands of additional people who don't want to languish on conventional dialysis? Why just try to help a small subset of the population? And why save Medicare money on just a small subset of the CKD5 Medicare population?

The next thing we at DSEN all say is wait - before you change the ethical structure of organ transplant to cure 80,000 people of conventional dialysis stop and consider other cures. I know that daily nocturnal hemodialysis is a very good method of renal replacement. All here at DSEN know that there are other ways to cure the problem of conventional incenter dialysis. Routinely offering every other day dialysis incenter, especially in combination with longer runs, would cure some of what is wrong with conventional dialysis. And higher doses of dialysis would save some of the hospitalization costs Medicare incurs when beneficiaries replace their renal function with nine hours of dialysis a week.

I can point to things Halcomb wrote that suggests he would share DSEN's point of view' and to Halcomb's October 2006 Nephrology News & Issues interview (PDF available to IHD members) subtitled NxStage machine leads to attitude change for one patient. I think anyone who has experienced an unconventional, healthier dose of dialysis would be against an organ market because of their dialysis experience.

There are libertarians on dialysis too but based on his dialysis experience I believe Halcomb would have known that the choice isn't between transplant/languish and die. His experience with unconventional dialysis is why Halcomb matters in this debate. He matters because he had experience with an unconventional, healthier doses of dialysis - Postrel using a quote from before this experience to bolster her case is not fair.

I and everyone who writes at DSEN support the idea of curing conventional dialysis. We can cure conventional dialysis for hundreds of thousands of people by changing what the term refers to. Speaking for myself I think conventional dialysis should be nocturnal dialysis at home, with the frequency worked out between the dialyzor and doctor. Three hour runs, three days a week should be offered only as a last resort, an appropriate use of today's conventional dialysis would be as palliative care for someone transitioning to hospice. As has been written and adopted as DSEN's position, optimal dialysis and transplant are complimentary forms of renal replacement. And both are cures for today's conventional dialysis. I don't see the need for the organ market solution.

Dialysis & CKD Blog Report 7/19

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 7/16.   If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle Bill notes the deafening silence from the Obama Administration in response to the Harvard letter and reflects on how the East Coast medical establishment should have written this 30 years ago; Peter comments on Virgina Postrel's cavalier and insulting responses to Bill when he challenged her assumptions about dialysis and transplantation; the blog report.
• Kamal Shah's Blog Kamal is outraged (and rightly so) that his friend, a long-time dialysis patient, is threatened to be cut off from dialysis if a particular wish of his doctor is not fulfilled.  Kamal states, "We really need a support system for people on dialysis in India. Where people can go to when they are faced with problems like this.... a system by which patients can be educated on their options and how to get the answers they want without compromising their treatment due to the offended sensibilities of their doctors." (Right, Kamal!); Kamal critiques a corporate computer project that failed; he worked on the project a short while and feels involved in its failure.
• Kaply, Inc. has a video about Starbucks sneaky new marketing strategy, she hates Starbucks; shares her music playlist and takes a nap.
• Toastiest  has a video of an old game show; suggests we watch golf this Sunday, hates Tiger Woods, loves Tom Watson.
• Becky Perry lists five things that make her happy; describes her heart catheterization, results  show no blockages so she is now listed for a kidney transplant. (Yay, Becky, what a relief!)
• Dialysis Postings has a post about living and dealing with hypertension.
• Lupus and Humor Carla responds to Deepak Chopra's (silly) assertion that Michael Jackson had lupus because of childhood sexual abuse. She feels that although there may be emotional components to chronic illness, singling out lupus that way is very unhelpful.
  
• Bud's Ramblings Bud's doctor says his lungs look better, and he bought a new bed.
• Disability Prejudice And Civil Rights Watch has a music video by Regina Spektor singing "One More Time With Feeling"; the UVA Hospital isn't even in  the top 100 so why are they so arrogant?; exposes that the owners of two psych hospitals made contributions to both candidates for Virginia governor. She'll vote for the one who returns the money.
• Precious Bodily Fluids links to an excellent New Yorker article that reviews the current crop of obesity books.
• Renal Fellow Network A study shows patients  with  Stage 3 CKD or worse who underwent acute myocardial infarction were much more likely to have lesions which are more proximal than those without CKD; the genetics of Wilms-Tumor; false positives/ negatives with FENa (a measure of the percentage of sodium excreted in the urine versus the sodium reabsorbed by the kidney.)
• Uremic Frost has an announcement and photo of his new baby, Jacob Ethan Prince. (Mazel Tov and congratulations!  He's beautiful!)
• Kidney Notes - Exploring the Intersection of Medicine and Technology has a glimpse into Reaching the Animal Mind by Karen Pryor; and a picture of the updated iPhone home screen.
• Lemonade and Kidneys has problems whenever her husband is out of town (I hate when that happens), this time she has a flood in the laundry room; her husband brings her flowers for their 19th anniversary.
• Mid-life ramblings met with nurses who are going to train her in home HD at the end of August, She'll be home by October, she's excited. (You're going to do great and feel so much better.)
• My Chronic Kidney Disease finds that his gluten free diet has helped his gas but he still craves wheat, reads that sometimes gluten-free diets can solve kidney problems so he's going to stick with it.
• The inner game of PKD sometimes comparing oneself to "healthy" individuals is counterproductive, there's always someone who has worse problems than you and compared to them you're doing well.
• DailyHemo - Home Dialysis Advocates New videos -  Haemodialysis: How To Do It :Technical Aspects; Michael Jackson Spotted in SL with Important Message; My Typical Home Dialysis Day.
• Biologically Safe Water Filters explains why they post real world examples of infections that their water filters might address.
• Encompass Network Partners A study seems to show that the use of infrapopliteal drug-eluting stents can save limbs stricken with critical limb ischemia.
• Bridge of Life Fifteen dialysis machines worth more than P15 million will be formally turned over to the provincial government by the Davita Medical Mission Group-Bridge of Life on Monday at the Pangasinan Provincial Hospital in San Carlos City, they are also providing six months of supplies.

MIRIAM'S WEBSURFING FIND: Libre Clothing is a new company founded by Megan Stengel. After watching her mother go through dialysis several times a week, she recognized a need for comfortable clothing that wouldn't be ruined by the four hour process. So after graduating from college, she took classes at the Paige Center for Entrepreneurship. While there, she found some like-minded partners and they anticipate opening their online store in August.

Here's a quote from their blog:

"Libre, LLC is a functional, comfortable clothing line for dialysis and chemotherapy patients. Our clothing is made with high quality fabrics and has a unique design that includes discreet access points for treatments. Libre improves patient's quality of life by providing them with clothing that is stylish and keeps them warm during treatment."

Their blog keeps people informed on what's happening and has photos of the rough drafts of one of the shirts they hope to manufacture.  They welcome comments and suggestions.  I''ll be keeping an eye on their blog for future updates and hope they succeed. 

Reasoning with Postrel: My Name is Bill

By Peter Laird, MD

In the last two years since starting on hemodialysis as my renal replacement therapy of choice, I have witnessed the provision of dialysis as provided in America largely by Medicare.  Often it is not pretty but it doesn’t have to be such a routinely violent process. It is not an issue with the dialysis modality in itself, rather instead in the lack of optimal dialysis as offered to patients world wide but not routinely here in America.  I am fortunate to not only be able to dialyze at home for the last month but to have been previously in a unit that achieved a 7% mortality rate in 2008.  That survival outcome is better than Japan’s leading average survival rate and is even more remarkable knowing the simple and easily repeatable practice changes that led to this result.

Bill Peckham recently engaged directly with Virgina Postrel in a discussion online on the magazine Reason's blog Hit and Run.  Bill rightly took umbrage to Postrel’s misuse of quotes from Bill “Epoman” Halcomb in her Atlantic magazine article, With Functioning Kidneys for All.  Reading the comment thread it seems clear that not only has Postrel unfairly characterized Bill “Epoman” Halcomb's thinking, but is now doing the same to DSEN's own Bill:

As for Bill Peckham, he may be content with life on dialysis, but many people are not. Yes, better dialysis would improve medical outcomes, but a transplant is far superior

I wondered first why Postrel so frequently misrepresents the views of people on dialysis named Bill. 

Bill Peckham, as most DSEN readers know, opted first for a living related renal transplant in 1988 from his brother.  Unfortunately, this graft failed by 1990 when Bill’s FSGS recurred in the graft kidney.  I have spoken with Bill and followed his writings for over a year and Postrel has failed to characterize correctly Bill Peckham’s personal journey with renal replacement therapy.  Bill has stated many times that he would love to be able to try another renal transplant but he declines due to the high risk of another failed transplant since his FSGS is believed to be still active.

It is a mischaracterization to say Bill is content with life on dialysis. Bill is not in any manner content with his plight. While he is eligible to request serial transplants - maybe the third time will take - his choice is to replace his kidney function with a very high dose of hemodialysis, preformed in his home, while he sleeps. That's an informed choice based on his clear eyed review of the situation. That is not simple contentment due to inertia. 

Worse yet is Postrel’s further comments in reply to Bill’s very reasonable and what I felt were restrained responses:

What you may not realize, because you're inside the world of dialysis, is that most people have not spent 5 seconds thinking about it. Dialysis is a "set it and forget it" entitlement. Medicare covers it, so who isn't affected ever has to think about it. And, as you well know, most dialysis is exactly the way I described it and not an easy thing under the best of conditions. You're just used to it.

I read this response from Postrel and simply could not understand her total disregard of Bill as a person and as sufferer of renal disease. 

To castigate Bill’s entire response and experience on dialysis to a cute phrase: “You're just used to it”, to do it in response to Bill’s testimony of his personal renal replacement journey, that is not the response one would expect from a nationally renowned author. Not only is the comment derogatory and unfair to Bill, but as a fellow dialyzor, I take umbrage with her pejorative remark to someone who volunteers in service to the CKD population covered by the Northwest Kidney Centers (NKC) and who volunteers as a very active dialysis advocate nationally.

Bill is the first patient to become trustee board chair for NKC.  This is a remarkable achievement for a position that is usually dominated by those in the medical field.  Bill is the most knowledgeable person I have ever encountered in the field of dialysis and the provision of dialysis under CMS.  Postrel’s comment completely underscores the insulting and dismissive manner in which dialysis patients have been ignored by the majority of the renal transplant community, not to speak of those who are standing up for what I believe are the unethical proposals of payment for renal donation.

If organ market advocates wish to use the argument that the usual dialysis care in America is terrible, then that is their choice. How dialysis is currently experienced by a majority of dialyzors is grim; that is well documented and not in dispute. However, these organ market advocates continually ignore the well established fact that optimal dialysis is available and cost effective without any changes to the law that they seek. If you base your argument on a fact - current dialysis practices are very hard to live under - then you are obliged to consider all solutions and then evaluate the solutions by comparing their projected impact.

Postrel’s comments become egregious when we consider that she will not consider the implications of optimal dialysis being equal in survival benefit to transplant. Simply stating that Bill is “used to dialysis” fails to acknowledge how hard Bill works at making dialysis work for him.  Bill undergoes nocturnal dialysis 4-6 times a week.  Bill eats well, he avoids smoking and he avoids undue stress with long walks with his dog and he takes his medicines as prescribed.  Bill further exercises and has maintained a full time job. He's dialyzed in over 20 countries.  Bill is an amazing member of our society as so many who know him will testify.  The fact that he accomplishes all that he does while treating his CKD5 with hemodialysis - alone, at home - is of even more credit to his enduring spirit.  

Bill "Epoman" Halcomb struggled for many years to attain optimal dialysis which unfortunately could not overturn the ravages of time.  Nevertheless, he has left a living legacy to the tributes of living on dialysis.  We must never forget the thirteen years he gained on dialysis that he would not have had five decades before.  The provision of dialysis in America falls behind the standards of dialysis throughout the developed world.  Who shall stand in the brink to bring this madness to an end?  I would expect those that understand these shortcomings to welcome all approaches that will save many lives, but in respect to the payment for organ supporters, they remain uniquely silent.  

Knowing the horrors of usual dialysis care in America should lead them to also support optimal dialysis at the same time that they wage their own battles to increase renal donation.  Yet sadly, not only do they not support publicly the improvement of renal dialysis modalities in America, it is my impression that they deliberately avoid the information showing how daily dialysis outcomes can be equal in survival to renal transplant. I am now finding that they may indeed consider people such as Bill Peckham and Bill Halcomb who advocated aggressively for optimal dialysis more of an enemy to their cause than an ally.  Unfortunately, they continue to misrepresent the association of optimal dialysis and renal transplant incorrectly as competing instead of complimentary treatment options.

Postrel is able to so easily dismiss Bill’s well framed responses by a cute phrase, “You're just used to it.”  My response to Virginia Postrel is simply, my name is Bill as well. He has lived the dialysis life and thrived.  It is an example for all to emulate.

The Obama administration should respond to the Harvard letter

By Bill Peckham

With regard to the letter (see WORD document or web page and RenalWEB discussion) from the Steering Committee of the April 23-26, 2009 conference “ESRD: State of the Art and Charting the Challenges for the Future”, (the conference was held in Boston and was sponsored by the Harvard Medical School Department of Continuing Education).

Dr. Blagg's note to RenalWEB should be read before reading Renal Business Today's followup on the lack of response from the letter's recipients, Nancy-Ann DeParle, director of the White House Office of Health Reform, and Barry Straube, MD, chief medical officer of the Centers for Medicare & Medicaid Services. The RBT article makes clear that the docs who wrote the letter expected their support would have immediate effect and that they are disappointed that people don't seem interested in making the provision of dialysis better.

I'm glad the new docs are not the same as the old docs. Still let us remember. Scribner was booed. Scribner's ideas were ridiculed. Scribner was disparaged by the docs who preceded the authors. I think Scribner is owed an apology. However, I agree with the larger point, that the Obama administration should act on the letter's message. Scribner would not give a wit who got the credit and Scribner would undoubtedly be as charitable as Blagg in welcoming all comers to his point of view. Clearly, Scribner and Blagg are better men than I.

It's too bad this letter wasn't written 30 years ago. It's too bad that 30 years ago docs from National Medical and the esteemed Harvard Medical institutions were disparaging home dialysis and the need for more dialysis. It is too bad that they were doing this back in the late '70s when their support would have made a huge difference. It is too bad that when it mattered 30 years ago the east coast medical establishment came to a very different conclusion about volume control and instead focused on hemodialysis adequacy as measured by urea removal.

I have an urge to hold the East coast establishment in a headlock and force them to admit Scribner was right. I agree with everything in their letter and I am delighted that the conventional nephrology point of view is moving away from Gotch and towards Scribner. Hopefully, it's not too late.

Dialysis & CKD Blog Report 7/16

By Miriam Lippel Blum

It was a very busy few days in the Dialysphere with lots of bloggers posting interesting facts and stories.  Here are the CKD related blogs updated since my update on 7/13.   If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle Bill takes umbrage at Virginia Postrel's Atlantic article ...With Functioning Kidneys for All  when she suggests that kidney donors be paid for organs and that dialysis is a fate worse than death;  the blog report.
• Kamal Shah's Blog Kamal has a very scary dialysis incident when he forgets to open a clamp and it causes a mess of trouble. (Those of us on home HD have all experienced things like this.  I bet you'll never forget that darn clamp again!); shaken by the previous incident, Kamal decides for the next few days not to start treatment on his own. (I know you were shaken up, but you kept a calm head, you got the help you needed and all resolved well.)
• Kaply, Inc. Everything hurts and pain meds not helping; her pain meds were doubled so she is feeling better, gets assertive with her doctor's receptionist and is scheduled earlier for a needed  followup appointment; makes a list of the things she cannot do until her arm is healed.
• Toastiest provides a link to an online auction service; is disgusted with people who give away their pets when they move.
• Hasten down the wire Michael writes about his decision to go back onto the transplant list  and comments on  Daniel Asa Rose's NY Times op-ed about how to decrease the US waiting list for organs; reports on how two University of Alabama-Birmingham falsified research data during the testing of two immunosuppression drugs; explains the use of content templates and why they are a good thing.
• Nitey Nite- a nocturnal dialysis blog Michelle is annoyed that someone came in to take a photo of her on nocturnal dialysis without permission or warning (And rightly so!); would like to see issues of patient comfort and privacy truly addressed in dialysis center and tried to get an interior design professor to make it a class project; in response to Natalie Cole's appearance on Larry King Live which resulted in her getting a kidney, Michelle has started a new blog entitled "I'm Famous -- Give Me a Kidney" where she tells why she is famous and deserves a kidney, too. and invites others to log in and tell their "fame" story.
• Becky Perry vents a little about her physical struggles including leg cramps, gout pain, sinus drainage, on top of the regular CKD5 exhaustion and discomforts (Don't worry, Becky, you have an empathetic audience here and we definitely think you're a winner, not a whiner.); gets her prescriptions filled at Walgreens and recommends their online tools, service, and friendliness.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease tested positive for the BK virus, he expects the doctor to lower his Cellcept dose for a while so his body can fight it off.
• On the Road to a Cure has an article that focuses on the personal stories of two people with lupus who exemplify how having lupus can alter your life goals -- for the better; the transcript of the "Your Skin & Lupus" webchat has now been posted online.
• Really, I'm as Old as I Feel? Two-year old Abby is now a swim class graduate having completed "Bubblers 1" (Congratulations!); things Rob learned during his office relocation.
• I Am. Are you? Team Illinois announces key upcoming informational meetings for the US Transplant Games 2010.
• Transplant Alliance Robyn woke up with a fever and aches, doctor sent her for bloodwork and swine flu testing since she was traveling recently; an ad for a medical tourism company.
• Lupus and Humor offers some tips on how to find a good doctor, or humanizing the one you have.
• Dialyse This has gained some dry weight and wants to lose it, is working again, and may lose his disability assistance due to a paperwork issue.
• Disability Prejudice And Civil Rights Watch points out the poor evaluation done by the psych  personnel she encountered and the consequences; describes poor record keeping and incompetent personnel that made her dialysis sessions a painful misery.
  
• Renal Fellow Network describes limitations to the MDRD equation for estimating GFR and adjustments that may make it more accurate; borrowed the "Billy the Kidney" costume from the Indiana NKF to surprise  his Dad' (also a nephrologist) at his 65th birthday party.
• Uremic Frost a study suggests that single substance use of aspirin or acetaminophen can safely be used in advanced CKD (Stage 4-5) without any increased risk of accelerated renal decline; a study shows that as a class ACE inhibitors did not appear to slow the rate of cognitive decline, but centrally acting ACEi may be of benefit, but more and larger studies are needed.
• Renal tsar's blog gives a link to show how much is spent on research into kidney disease;  and  a link to the program budget and expenditures for renal care.
• History of Nephrology writes about early PD and the development of the Tenckhoff catheter.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) has an article on the rights and duties of the renal patient in Peru. 
• pkdmom2five shares photos of costumes for an "old party" and of their new dog, Roxy the Boxer.
  
• The inner game of PKD doesn't like medical surprises and stresses the importance of becoming an educated  patient.(Educated patients live longer.)
• Nathan's PKD is doing well after his cystoscopy and shares a response he wrote to a person with newly diagnosed PKD.
• I need a kidney gives a link to the New York Times opinion piece about medical tourism, and writes about the people who have offered to sell him their kidney which he find appalling. "... selling a kidney sets a bad tone in America about what health is worth, and who can afford it."
• DailyHemo - Home Dialysis Advocates New videos:  Guide: Crit-Line in Hemodialysis Setting.
• Encompass Network Partners reports on a study which evaluated the effectiveness of a screening program for peripheral vascular disease wherein trained renal nurses evaluated CAPD patients' feet. (Guess what?  They did a great job. Yay, Nurses!); reports on tweet they received regarding Celliant/Health socks made from patented Celliant yarn that has been clinically proven to increase oxygen in the body, reduce pain, and help regulate body temperature. Good for diabetic feet; reviews two studies evaluating efficacy of modalities for treating Critical Limb Ischemia  (CLI) in patients without further vascular surgery options.
• NephrOnline Blogs In First Word, Mark E. Neumann opines on the turf battles over patients going on in Colorado and ponders whether the renal industry has lost its way. "...if these turf wars were based on improving patient outcomes -- rather than enticing patients with bigger TVs or better massage chairs--we would all feel better about it. But it's not."
• Renal BizBlog reports that a new drama, “Three Rivers,” premiering on CBS this Fall, will track the transplant process through the eyes of organ donors, recipients and surgeons. (It's about time.  I hope it's more realistic than ER was.) To check out the preview, click here.

Paying for kidneys is a shortcut to a dead end

By Bill Peckham

It isn't until the end of Virginia Postrel's nearly 5,000 word Atlantic article ...With Functioning Kidneys for All that the idea of paying for kidneys enters the discussion. For most of the article she is outlining ways to increase altruistic living donation: pointing to advances such as laparoscopic nephrectomies being much easier to recover from (I can vouch for that, nine days out and I had a full day today), and logistical solutions to match willing donors with compatible recipients.

As Postrel says we can all agree that swapping kidneys is a good thing but she continues what we really need to make the system work is money. We need to pay people to donate a kidney. Postrel comes to this conclusion after noting that one can imagine enough donors to meet the need through altruism (just look at how many Churches there are in the US) her point is that money would allow the system reach its potential. To Postrel the paired exchanges become just like a barter system and cash is how you make a barter system preform more efficiently.

True to a point but not so fast. Just because the exchange became complicated, involving multiple parties, does not mean the nature of the exchange changed. No matter how complicated the paired exchanges get they are still gift exchanges, not business transactions. Paying the donor would change the entire nature of the program. Kidney transplant is not walled off from the rest of medicine. Change the structure of the kidney acquisition/transplant process and you change the structure of medicine; most particularly the acquisition/transplant of other organs and tissues.

If a kidney from a living donor is worth $25,000, what's a postmortem kidney worth? How much for a postmortem liver? Postmortem donation of hearts, livers, lungs and all manner of other useful tissues rely on altruistic donation. If body parts become commodities what will it mean for all the people waiting for postmortem donations? I think the needs of people waiting for irreplaceable body parts (e.g. hearts, lungs, liver) should be considered before the needs of those waiting for a kidney.

I'm suspicious of the whole business of paying for kidneys. At its heart it is substituting a business ethic for a medical ethic. Historically that's been a bad deal for the ill. But I am particularly suspicious of the organ market advocates who focus exclusively on kidneys but not on kidney disease. When I see that these advocates have no energy to keep people from needing dialysis or a transplant; that there is no energy around improving the provision of dialysis; when these advocates have no interest in diminishing the overall burden of CKD5. I'm suspicious. Postrel has a very narrow interest around kidney transplants. I think she is seeing it as the only cure for dialysis.

For Postrel dialysis is seen as the disease. A fate worse than death, really no more than a slow death. And maybe someone like me might get use to it, or somehow be content with life on dialysis, no matter. To Postrel I Hate Dialysis makes perfect sense as a statement of fact; she's even gone to the point of convincing herself that Bill "Epoman" Halcomb IHD's founder shared her views, and that she knows what Halcomb believed in his heart. Postrel sees herself as having a moral duty to make sure anyone who wants a kidney transplant can get one, the important thing is to stay off dialysis. Transplant fetishist is not the best perspective with which to approach the question of paying donors for their organs. Postrel should have stopped at 3,700 words.

Dialysis & CKD Blog Report 7/13

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 7/10.   If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle Bill strongly critiques an article advocating for an organ market wherein the author misappropriates Bill "Epoman" Halcomb's writing.
• Kaply, Inc. Tracy's surgery went well but she is in excruciating pain, her friend Mighty Hunter guest posts about his wisdom tooth extraction; Tracy's friend Cheryl guest blogs about her current obsessions.
• Hasten down the wire writes about how worthless George Bush’s warrant-less wiretapping program was.
• Becky Perry has a list of four things that made her happy; shares her recipe for Spaghetti Casserole; shares an entry of tidbits from her day book; gives a link to an inspiring video about a young man with CP who fulfilled his dream with amazing persistence which inspires her to think about her own dreams, the ones fulfilled and the ones yet to be.
• The Adventures of Stacy Without An E Stacy has severe Sleep Apnea which leaves him sick and exhausted, contemplates a surgical remedy, and is feeling miserable. He misses the Normal Stacy who seems to have mostly disappeared in the wake of CKD5 and dialysis.
• On the Road to a Cure information about cutaneous lupus erythematosus, aka Lupus skin disease.
• I Am. Are you? writes about a video, soon to be completed, that tells an amazing story about a heart transplant recipient.
• Chronic Chick Talk Her tomato and green pepper plants are doing well; is going to back up all her files to an online service called ID Online Backup.
• Disability Prejudice And Civil Rights Watch points out how difficult it is for someone with disabilities to report a crime; Alison is distressed that Virginia's Commission on Mental Health Law Reform, which operates very covertly., and which  passed a horrible law that takes away choices, allows guardians to admit people to psychiatric institutions for 10 days without a hearing, allows the dying to orally consent to experimentation etc.  is now taking on the issue of Advanced Directives; will ignore people who undermine the concept of empowerment with lame and insulting definitions; links to and comments on a news article about a for-profit company that runs substandard prisons which just got a contract to run a psychiatric hospital in Texas.
• Uremic Frost a study shows that the timing of HD post heart attack did not seem to make a difference. But, there were other factors that did...particularly the potassium, change in potassium and the other underlying comorbidities; a video of a news report on the kidney transplant chain.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) reflects on lessons learned in three years on dialysis and the importance of finding meaning in one's life; describes his dialysis center's response to H1N1,  is forced by his employer to become a teleworker from home since he is potentially vulnerable and finds adjustment difficult.
• pkdmom2five reports that her cousin is off the respirator but will need to learn to walk again in rehab. over the next year.
• Kidney Notes - Exploring the Intersection of Medicine and Technology has a photo of people capturing the sun rising between Manhattan skyscrapers on their video cameras.
• My New (Transplanted) Kidney teaches the importance of having backup lab forms and contact numbers because clerical errors happen.
• DailyHemo - Home Dialysis Advocates New videos: What About Kidney Dialysis?; The Five Stages of Chronic Kidney Disease: Living With Kidney Disease: What You Should Know; Chronic Kidney Disease: Can We Stop the Epidemic?; People and Pets: Common Diseases - Kidney Disease; India: Chronic Kidney Awareness Film; The Basics of Kidney Disease presented by Dr. Paul Crawford; En Espanol: Dialisis en Casa; Presentation: Wellbound Home Dialysis. 
• Bridge of Life  DaVita Medical Missions announced the grand opening of the new Dialysis Center in San Carlos in the Philippines . They have also partnered with the government to present educational workshop camps for the public.
  

Postrel advocates for an organ market by misappropriating Epoman's writings

By Bill Peckham

Virginia Postrel has written an article in the Atlantic touting the need for an organ market: With Functioning Kidneys for All....  I found her arguments unconvincing to the extreme and I attribute their weakness to her distorted and minimalist understanding of kidney disease and renal replacement. She is the proverbial blind woman describing the elephant by grasping only its tail.

I'll address the many flaws in Postrel's reasoning in a future post (or I can simply reprint DSENs previous posts on the misguided notion that what we need is an organ market).

What needs to be said first. What needs to be said now and what set my teeth on edge and clouds steaming from my ears was her caviler use of Bill "Epoman" Halcomb's words and the deceitful decision to select 14 words out of a massive body of Bill's writings:

“Yes, it keeps us alive, but this is not what living should be like,” wrote Bill “Epoman” Halcomb, the founder of the patient community at IHateDialysis.com. (Halcomb died in March 2007, after 13 years on dialysis. He was 34.)

Damn you. Damn you for pulling that quote and using Bill's demise to advance your uninformed opinion.

Read Peter's tribute honoring Bill. Bill made an amazing journey. The journey from I Hate Dialysis to I Love NxStage (archive link) in public. His travelogues of that journey are on the internet for all to read.

You can follow that journey on the Home Dialysis Central's forum from Bill's first posts to his later posts as well as his many more recent post on IHD. At very least read Bill's home more frequent dialysis training diary.

In the end Bill understood the myth of the high dialysis mortality rate and Bill understood, what I and so many others understand: dialysis can make you feel well and it can allow you to live a normal life. The only requirement is that you get enough.

Dialysis & CKD Blog Report 7/10

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 7/8.   If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle has the blog report.
• Kaply, Inc. Tracy's Medicaid was reinstated for August but her surgery is tomorrow and she has no idea how she is going to pay for it. (We hope all goes well,); Tracy's friend, Renn, guest blogs while Tracy is out having surgery. She writes about her young daughter's creative writing.
• Birdman is setting up appointments for heart tests but also to have his non-functioning transplanted pancreas and kidney removed to get ready for new transplants.
• Hasten down the wire explains how President Obama’s approach to reforming healthcare is to obtain minimal cost growth slowdowns from insurers and providers with one hand while doling back enormous amounts of cash with the other.
• Becky Perry has a peek into The Power of Praying for Your Adult Children by Stormie Omartian; recommends going slow the first week of home schooling and checking out a helpful link she provides to get new curriculum ideas.
•  Life on dialysis ... and now life after my transplant! Holly speaks to another high school and shares her and another transplant recipient's talks; gets ready for her vacation and shares the transcript from an interview she gave.
• Let us Consider One Another gripes about the US government.
• On the Road to a Cure gives a link to the New York Times website's  Patient Voices series which  is featuring the stories of people from across the country who are affected by lupus.
• I Am. Are you? has a must-see video on organ donation and a link to another. (Both videos brought tears to my eyes.)
• Dialysis Postings writes about Hepatitis and the Dialysis Patient.
• Lupus and Humor ponders whether Michael Jackson had lupus. (Probably.)
• Bud's Ramblings notes that he hasn't seen many butterflies this summer, had a follow up CAT scan of his lungs but no results yet, and looks forward to fresh squash casserole this evening.
• Disability Prejudice And Civil Rights Watch Alison describes several of the awful things she  experienced and observed in the psych. unit.
• Precious Bodily Fluids shares extensive handouts from his first two lectures to his medical students.
• Renal Fellow Network reports that transplant patients with native ADPKD kidneys who were given an immunosuppressant regimen containing the drug rapamycin (sirolimus) displayed less cyst growth than those who did not receive rapamycin;  chemists from Ohio University have succeeded in harnessing the power of urine to drive a hydrogen fuel cell (Next, a pee-powered automobile.  Fill 'er up at your nearest urinal!;
• Uremic Frost An eight-way kidney transplant exchange sets a new record; writes about the Ohio chemists (see above blog) but also links to an article about pee-powered batteries already on the shelves in Japan (Now let's all sing "Urine the money..."); a study in the British Medical Journal shows that late referrals to nephrologists are associated with higher mortality and higher rates of admission to hospital among kidney patients, and with lack of permanent access for haemodialysis and early failure of arteriovenous fistulas, as well as decreased quality of life.  (No surprise there, but with the push for primary care docs to handle everything to avoid more expensive specialists, it's going to be hard to change.)
• Renal tsar's blog attended a conference where it was noted that few patients in dialysis units had registered for the end-of-life information available and makes suggestions as to how to increase awareness of the program; discusses whether or not PKD patients should generally be screened for aneurysms that might rupture.
• pkdmom2five makes an appeal for prayers for her Kentucky cousin who was severely injured in an auto accident. (We all hope for his recovery.)
• The inner game of PKD  writes about the importance of finding a positive spin to your PKD story.
• Nathan's PKD is frightened about his pending cystoscopy and writes a prayer to God.
• I need a kidney gives a link to the story about the record breaking eight at one time transplant chain.
• DailyHemo - Home Dialysis Advocates Many new videos to view here --  Procedure: Peritoneal Catheter Insertion; Young Scientists Working on Peritoneal Dialysis Research; Tips: Avoiding Peritonitis When You Have Pets;  Peritoneal Dialysis in the Ukraine; Spanish: Dialisis Atomizada; Spain: Dialysis Report; Caracteristicas Dialisis Peritoneal Automatizada; Chronic Kidney Failure: Treatment.
• Biologically Safe Water Filters suggests that their water filter will reduce inflammation caused by poor water quality, as mentioned in a recent letter by prominent nephrologists to the US Healthcare Reform Director.
• Encompass Network Partners has developed a Web-based application that aids clinic staff in performing foot checks and connects clinics with a network of foot-care specialists. Standardized screenings will identify those with foot ulcers who are at risk for amputation.
• Kidney Diet Tips has an article on fish oil supplements and kidney disease.
• Bridge of Life reports that the first clinical team from Bridge of Life-DaVita Medical Missions arrived in the Philippines, and updates on the progress of the preparations for opening the dialysis clinic in San Carlos City.