Dialysis from the sharp end of the needle

Dialysis & CKD Blog Report 5/31

By Miriam Lippel Blum

 Here are the CKD related blogs updated since my update on 5/28.   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 has a blog report.
• Kamal Shah's Blog Kamal discusses the question of whether to tell people about his CKD or not. (I've struggled with that, too.); protests delays in the trial of the terrorist that shot up Mumbai.
• Kaply, Inc. Tracy had an ultrasound of her fistula and a problem was seen that required surgery the next day; it went well but she is still impacted by the drugs. (I had a fistula repair done this week, too. My arm looks like it was in a bar fight!)
• Drinking my way through Trader Joe's Wine reviews a red wine she dubs a "Wednesday night" wine, as opposed to a Sunday wine, but since she considers herself a Wednesday night person that is acceptable.
• Toastiest is feeling lousy because of CKD symptoms; posts recipe for his famous Lemon-Ginger Punch (I hope this takes the edge off the day.); may become a Nielsen TV rater and change the content of the commercials, no more Wilford Brimley, for example.
  
• Nitey Nite- a nocturnal dialysis blog Michelle grouses about appointments with social workers, dietitians, and doctors that really accomplish nothing but generate bills. (I'm with ya', Babe.)
• Becky Perry is planning her own homeschooling curriculum for her boys; posts a photo of her handsome boys all dressed up for a graduation ceremony; and starts a list of summer activities to accomplish.
• Life on dialysis ... and now life after my transplant! Holly is recognized while in the supermarket, makes some cool new posters, and while she is encouraged by new data on transplants still sees much more work that must be done.
• PKD & Dialysis ... Where I Tell It Like It Is doctor recommends orthopedic stockings for swollen feet.
• I Am. Are you? recommends an Examiner columnist that writes about notable donor families and volunteers.
• Transplant Alliance Mia awaits x-ray results.
• Life on Dialysis has a low BP blackout at work; wants to make a difference in the lives of people he meets and know who his real friends are.
• Chronic Chick Talk has a mother-daughter chat about leg hair removal.
• Dialyse This clotted on the new machines but is cheered up by Stargate Atlantis.
• Bud's Ramblings bought some antibacterial hand soap that he doesn't like and some Biotene toothpaste that he hasn't tried yet; posts photos of the flowers in his front yard. (Lovely!)
• Precious Bodily Fluids has a spoof ad about the Palm Pre; and presents information from chapter one of The Sugar Fix which implicates fructose as a cause of obesity.
• Renal Fellow Network writes about how to differentiate familial hypocalciuric hypercalcemia versus primary hyperparathroidism.
• Uremic Frost has a video report about a study linking kidney stones and heart disease. 
• Free range fish sticks has a quick but emotionally nurturing trip to family in Florida, at home Sheila's doctors try to figure out her dry weight.
• Chronicals of the PD Warrior links to a humorous cartoon site.
• The Ballad of Billy The Kidney is going to chronicle his participation in a kidney fund-raising event and provides a link  for sponsorship.
• DailyHemo - Home Dialysis Advocates New videos: PD with the Baxter HomeChoice; Excuse the Dialysis Machine?; Baby Julian During Dialysis; She Describes How She Does Home Dialysis.
• Kidney Diet Tips has an article on controlling high potassium in CKD.
• The Renal Unit Renal tweets, news, and blogs.

Dialysis & CKD Blog Report 5/28

By Miriam Lippel Blum

 Here are the CKD related blogs updated since my update on 5/25.   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 has a blog report.
• Kamal Shah's Blog writes about the frustration that comes with the up and down side effects of CKD; he likes to send and receive birthday wishes.(His is September 28); he also prefers a cup of black coffee to one over-sweetened.
• Kaply, Inc. Tracy lists foods she won't eat and foods she is picky about. (I wouldn't eat chicken feet either!)
•  Toastiest likes his new car but feels it's a little indulgent and feels guilty about that. (Life's short, might as well enjoy what you got.); Toastie lip-syncs a song by Journey while snuggling with his dog. (And 3000 people watched it...including me.)
• The Life of a 20-Something With Lupus is saddened by estrangement from people she thought of as close friends.
• PKD Notes explains why Glomerular Filtration Rates (GFR) may be inaccurate and gives links to articles for further research.
• The Adventures of Stacy Without An E Stacy has terrible nausea on Mondays and fights the terrible dialysis monster at the clinic.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease His sister is still not drinking enough post-transplant and had to have another NG tube to force fluids into her.
• Jack's Kidney Adventure Jack is doing well post-transplant, working up to a full work day, but misses gardening (too many infection causing microbes and stuff in soil) and being in the sun; his nurse calls to say his labs are perfect (Yay, Jack!) and he expresses appreciation that she communicates good news, not just bad. (Expressing appreciation for caregivers and professionals for a job well done is always a good thing to do.)
• PKD & Dialysis ... Where I Tell It Like It Is  waits for ultrasound results, arm seems a little better.
• On the Road to a Cure announces a Walk for Lupus event in Connecticut, May 31; and a photo exhibit in Philadelphia commemorating Lupus Awareness Month in memory of the photographer's sister who passed away from complications of lupus; reports on a study that showed Raptiva could be effective in treating severe discoid lupus.
• Really, I'm as Old as I Feel? Cute baby, Abby, is almost two, loves cookies, but is restless at meals.
• I Am. Are you? A moving transplant story from a young mother with lupus.
• Transplant Alliance MJ has hip pain and an appointment to see a doctor about it.
• Dialysis Postings has information on lab tests and blood levels for dialyzors.
• Bud's Ramblings Bud had a nice weekend and shares an inspirational message from a friend.
• KIDNEYBLOG A new blog, by a DaVita Medical Director, discusses issues, news, and science relating to CKD.  Current posts are: Introducing CKD to Primary Physicians; What Happens When Doctors Rely on Invalid Data? (A very interesting and cautionary tale for both doctors and patients about PTH lab results); and DaVita Joins EPA Power Partnership.
• Precious Bodily Fluids is impressed with Dr. Richard Johnson's lecture on uric acid; presents a debate as to whether UpToDate is evidence based medicine or not, he votes not;  reports and links to a cool site on eGFR and Proteinuria; two study reports, one showing a positive effect of dipyrimadole and aspirin on dialysis graft patency, and the other showing that thiazolidinedione (Now there's a mouthful!) use is associated with better survival in non-insulin dependent diabetics; and last, presents the ideas in the first chapter of The Sugar Fix by Richard Johnson, MD.
• Renal Fellow Network explains potassium sparing diuretics; and presents his zebrafish model of PKD.
• Uremic Frost The FDA approves tolvaptan tablets for use in hyponatremia (low sodium level) associated with heart failure, cirrhosis, and the syndrome of inappropriate antidiuretic hormone secretion; a link to a new podcast by the American Kidney Fund about compassion fatigue.
• Renal tsar's blog writes about exercise training in CKD; program budgeting in kidney care.
• Pinoy Dialysis A dialysis blog, new to our list, from the Philippines.  The last five posts cover these complications of CKD: secondary hyperparathyroidism, pericarditis, amyloidosis, neuropathy, and sleeping and bleeding problems.
• Free range fish sticks Sheila is back home from the hospital. Don rejoices.
• Neophron's Senescence has an e-card for Kaci, and compares the young Obama's stand on health care with President Obama's position; and happy photos from a trip to Portland. 
• pkdmom2five has been diagnosed with colitis and started on a steroid; one son finishes drivers' ed and another is going to the doctor by himself for the first time.
• Lemonade and Kidneys is stressed and exhausted but a Wednesday Spaghetti night with friends cheers her up.
• Work In Progress finds inspiration looking at her young son and thanks God.
• PKD World Jezebelle struggles with high blood pressure and medication changes.
• I need a kidney Jason notes that renal issues have been in the media lately and s moved by a short segment of an NPR interview with Anna Deavere Smith who talks about one woman's struggle with dialysis.
• DailyHemo - Home Dialysis Advocates New Videos: Medicare changes could cut care for Black CKD5 patients; Father and Son in Peru make low cost dialysis available; ER: Carter on Dialysis; Harvey Wells crosses the nation in dialysis marathon; Instructions for SureSeal Pressure Bandages; WallStrip: Davita (A tongue in cheek analysis of why DaVita stock is doing well.); Home Dialysis Provides a Bit More Freedom; Dialysis Tech Describes Dialysis Machine; Children on Dialysis Maintain Hope; Wellbound Talks About Home Dialysis; DaVita Investors Spy Healthy Returns; Dialysis Patient Breaks Bricks for Kidney Awareness; Overnight Dialysis Can Save Your Life; Wallace Lane says "I got my life back!";  a news story on how California budget cuts may affect dialysis; William Doherty Shares Freedom with You; When Love Matters, Nothing Else Matters; and How Much PD Supplies per Month?
• Kidney Community Emergency Response June 1 begins hurricane season and check out the Welcome to Disasterville newsletter.
• NephrOnline Blogs A report on Shad Ireland's "What Inspires You? ride and his visit to a Native American  reservation; a Supreme Court nominee who has Type 1 Diabetes.
• Renal BizBlog has a review of a book about the true story of an American who goes to China to help his cousin get a kidney transplant. (Sounds fascinating!)
• The Renal Unit Current renal twitters, news, and blogs.

Dialysis & CKD Blog Report 5/25

By Miriam Lippel Blum

Happy Memorial Day!  We salute all those who have fought for us.  Here are the CKD related blogs updated since my update on 5/22.   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 reports that changes in Medicare rules spell bad news for daily home HD dialyzors.(I think the changes are terrible.)
• Kamal Shah's Blog Kamal writes about the problems kidney disease can cause in a marriage.
• Kaply, Inc. Tracy has a busy weekend, enjoyed friends, the outdoors, and won a T-shirt.
• Drinking my way through Trader Joe's Wine celebrates Memorial Day with gardening, making home-made ginger beer, enjoying a nice Spanish wine with a lunch menu that includes roasted wings in honey BBQ sauce; she has a great NY night with a play, a fine dinner, good wine, and chocolate mousse cake. She adds a little ice tea to her ginger beer to cut the bite and has a delicious picnic menu planned. (We're all coming over for lunch with you...and Happy Birthday, Anna!)
• Toastiest has a lovely song posted "Where Do You Start?" by Alan Bergman.
• Birdman has a clotted fistula. (Sorry to hear that. We hope the surgeon can clear it out.)
• Nitey Nite- a nocturnal dialysis blog Michelle is into reading vampire novels while on nocturnal dialysis and wants a sexy vampire who will suck toxins out of her with one bite while making love. (I don't think the FDA would approve without many clinical trials.) Staff problems continue and her fistula can't handle buttonholes.
• PKD & Dialysis ... Where I Tell It Like It Is has swelling in an arm and ankle, needs an ultrasound  and is worried.
• Really, I'm as Old as I Feel? likes Skype but feels it's ruining TV interview shows.
• Dialysis Postings explains anemia in CKD.
• Chronic Chick Talk salutes all the veterans, wishes everyone a Happy Memorial Day and posts music video "Hold On" by Wilson Phillips.
• Bud's Ramblings Bud and his wife celebrate their 45th anniversary by planting a beautiful garden together. (Congratulations! May you have many more years and gardens together.)
•  Renal Fellow Network Betel nut chewing can also cause hypercalcemia, metabolic alkalosis, and acute renal failure similar to Milk-Alkali syndrome (I didn't know what betel nut chewing was either, go Google it, or check out this blog.); Is a Minnesota Vikings fan and explains how pro football players mask steroid use by taking diuretics;  a video of a daredevil motorcyclist who has a kidney "explode" on impact during a stunt; the importance of residual renal function.
• Uremic Frost announces a Kidney Walk to be held on 5/31 at Hofstra University at 9:30 am; a study showing the concomitant use of gradient ultrafiltration and sodium dialysate helps patients with intradialytic hypotension; a study shows that CKD may progress more slowly in women; another study showing that obesity is a strong risk factor for decline in kidney function after initiation of dialysis therapy.
• Free range fish sticks Sheila is still in the hospital, no diagnosis for the severe headaches despite many tests, Don would do anything to take her pain away. (Our hearts go out to you and you are in our prayers.)
• Jenna Franks posts recommendations about how to find a living donor.
• The Ballad of Billy The Kidney posts a fun public service announcement from Australia for Kidney Health Week, and a Natalie Cole music video in honor of her transplant this week, also reports that Natalie's sister just died. (Our hearts go out to Natalie at this loss.)
• As The Pump Turns writes about the first person to die under Washington State's Death with Dignity Act.
• DailyHemo - Home Dialysis Advocates New videos: Josh Rieke's Apartment of Science explains how a dialyzer works (Very funny video - Bill Nye the Science Guy has competition now.); a news story  on home hemo using the NxStage System One;  an NKF public service announcement about CKD risk factors; and a video on the histoof the AV fistula.
• The Renal UnitCurrent renal tweets, news, and blogs

GAO reports CMS plans to end medical exception payments under expanded bundle

By Bill Peckham

RenalWEB links to a 32 page GAO report (pdf link) that looks at the impact of expanding the Medicare payment bundle (due to happen in 2011) on the provision of home dialysis. The GAO paid particular interest to the costs of providing more frequent home hemodialysis. The headline is that CMS Should Monitor Effect of Bundled Payment on Home Dialysis Utilization Rates.

That's a good idea but the real news is on page 16 and 17 of the report (pages 20 and 21 of the pdf):

Indeed, under the current partially bundled payment system, we found that some home dialysis providers now have been granted medical necessity exceptions to receive Medicare reimbursements for additional dialysis treatments beyond three per week. CMS officials told us that they are unlikely to allow these additional reimbursements under the expanded bundled payment system.

That is bad news for the future of frequent home hemodialysis.

Dialysis & CKD Blog Report 5/22

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 5/19.   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.  Have a nice Memorial Day Weekend, Evaryone!

• Dialysis from the sharp end of the needle has a blog report.
• Kaply, Inc. Tracy gets her iron replacement IV and it makes her ill; she has a bad migraine and is in a bad mood.
•  Toastiest His car, a Prius, dies and he needs another (I never knew the plural of Prius was Prii.); and there is no more free Crystal Light at work due to the recession. (That's better than getting downsized.)
• Birdman describes his evaluation for another transplant, is told he's a good candidate pending the outcome of a cardiac catheterizaton  (We hope all goes well.)
• Hasten down the wire opines on the credit card industry. (I got a "charge" out of this post.)
• The Life of a 20-Something With Lupus enjoys a beautiful day and sees the eye doctor.
• PKD Notes describes how cysts grow in polycystic kidneys and some of the clinical trials out there now that aim to stop them.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease updates about his sister's condition 3 weeks post-transplant. She's having a rough time with nausea, walking, and breathing.
• Life on dialysis ... and now life after my transplant! gets a kudo letter from a member of Parliament, has more plans for her organ donation awareness campaign; catches a cold from a really cute baby.
•  On the Road to a Cure has a link to a short survey on lupus to generate discussion for a program on issues that impact people with lupus around the world; It's still Lupus Awareness Month send e-cards to inform people about lupus.
• Really, I'm as Old as I Feel? Rob's sister moves in, and coordinating everyone's dietary issues is a challenge.
• I Am. Are you? writes about current misconceptions and confusion about organ donation and registration.
• Dialysis Postings talks about hypertension and kidney disease.
• Bud's Ramblings He would like to have a house on a scenic mountain, pulmonary doc did a CAT scan and may prescribe a vibrating vest to help break up congestion in his lungs.
• Precious Bodily Fluids gave two talks on the problem of chronic kidney disease on the elderly, specifically whether CKD was over diagnosed (yes it is) in this population and can it be safely ignored (no it can't), provides a link.
• Renal Fellow Network describes milk-alkali syndrome in which hypercalcemia, metabolic alkalosis, and acute renal failure can occur simultaneously.
• Uremic Frost reports that drinking large amounts of cola-based drinks may result in severe hypokalaemia; Natalie Cole gets her kidney (I hope she helps bring more attention to CKD and transplantation.); a study showing that treatment with dipyridamole plus aspirin reduces  the risk of stenosis and improves the duration of primary unassisted patency of newly created AV grafts.
• My Wife Has Lupus - Support for individuals whose family or friends have lupus reminds us that May is Lupus Awareness Month and has suggestions to spread awareness of it. 
•  As The Pump Turns  is starting a political blog.
• Living with PKD posts the 30 Rock video.
• I need a kidney Jason Hamlin is a new blogger who is searching for a kidney. He chronicles his CKD and dialysis story, as well as talking anout 30 Rock. (Welcome to the renal blogosphere, Jason.)
  
• DailyHemo - Home Dialysis Advocates has two videos on fistula maintenance, a free online book on vascular access, a video on healthcare decision making, and a video of techs playing dialysis supplies Jenga. (Or,what to do with all your boxes when you're really bored.)
  
• Encompass Network Partners A study showing promising treatment for peripheral arterial disease;  and an overview of the disease.
• Kidney Community Emergency Response has information on Hurricane Preparedness Week, May 24 - 30.  Hurricane season begins June 1. Be Prepared!
• The Renal Unit has current renal twitters, news, and blogs.

Dialysis & CKD Blog Report 5/19

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 5/16.   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 has a blog report.
• Kamal Shah's Blog He continues his story about the "charmed glass of water" cure for renal failure wherein he describes a frightening episode of fluid overload and conflicts with his family; eventually he gets demoralized and disgusted with the "treatment" and gives up on it; in the epilogue he reflects on his experience, expresses frustration with those who offer untested therapies, and wonders why alternative therapies are not regulated more.
• Kaply, Inc. Talks about sundry matters and wishes her Mom a happy birthday; has two bad days but expects her robots and nothing will ruin the day of the robots. (I have no idea what robots she is talking about, but hey, have a blast, Tracy!)
• The Life of a 20-Something With Lupus Her Dad wins an award for his volunteer work with sickle cell anemia fundraising, and she worries about whether she will pass on her illness to her child.
• Becky Perry Interviews her friend Marisa Gary who just wrote a book entitled Remnants: Devotions for When We're Broken; Becky adds another PD exchange during the day and she is feeling much better now.
• The Adventures of Stacy Without An E Stacy briefly chronicles his last five years on dialysis and, as he starts year six,is very despondent.
• Life on dialysis ... and now life after my transplant! Holly has a lovely weekend, receives a beautiful gift, and attends a fundraising 10K run in Manchester.
• On the Road to a Cure reports that investigators at UCLA believe they have discovered an antibody in the blood, MAGE-B2, which may be associated with lupus kidney disease in children.  This may have implications for treatment eventually.
• I Am. Are you? Reports on the Texas hospital that is "twittering" a kidney transplant surgery.
• Transplant Alliance announces a seminar in NY on Hepatitis C and the liver.
• Chronic Chick Talk has a Janet Jackson video posted.
• Bud's Ramblings had a needle infiltration at dialysis and his arm is swollen (Ouch!  Ice should help it.) so he couldn't go to a homeowners meeting, and shares a yummy summer drink recipe called "Lime Freeze."
• Renal Fellow Network notes that you can purchase the full 30 Rock music video for the song "We Need A Kidney" at the I-Tunes web site for only 99-cents, the proceeds of which are being donated to the NKF; next is a report on a genome-wide association study for CKD; and last, a post about the history of bicarbonate in dialysate.
  
• Renal tsar's blog notes the publication of the Specialised Renal Services (Adults) Definition for the UK.
• Free range fish sticks Sheila is still in the hospital and had a nuclear medical imaging test + spinal tap to determine the source of unrelenting headaches.
• pkdmom2five has an H.Pylori infection and has to do some major and unpleasant antibiotics, yet she counts her blessings.
• Mid-life ramblings had a good Sunday, will be learning to put in her own needles tomorrow. (Good for you! You can do it!); managed to do her own needles and didn't even get queasy (Congratulations! That's terrific!)
• My Chronic Kidney Disease shares some information he's learned during his search for a cure for his CKD.
• DailyHemo - Home Dialysis Advocates has videos on hemodialysis, PD, In-center nocturnal and home  dialysis in Portugal, Reverse Osmosis, Dialysis & PKD, Difficult Patients, and the transcript from the Twittered kidney transplant.
• I need a kidney new blog for the blog report - catches 30 Rock
• Encompass Network Partners has information and statistics regarding peripheral arterial disease (PAD); and clinical approaches to PAD.
• Renal BizBlog has a link to the Twitter transcript from Monday's kidney transplant.
• The Renal Unit Latest renal twitters, news, and blogs.

Dialysis & CKD Blog Report 5/16

By Miriam Lippel Blum

The big news of the week was the 30 Rock song about kidney donation and many folks linked to it.  If you haven't seen it yet, there are lots of sites who will help you find it. Here are the CKD related blogs updated since my update on 5/13.   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 posts a funny star-studded music video about kidney donation from TV show, 30 Rock. (Now we need one for optimal dialysis.)
• Kamal Shah's Blog Kamal continues the story of the charmed glass of water; he is frustrated with the Indian election politics; Charmed Glass of Water, Part 3 (Kamal, this is fascinating and heartbreaking.)
• Kaply, Inc. has a silly conversation with a friend about his daughter; a hysterical video promo spoof for  a sci-fi film staring My Little Pony (I laughed out loud at this one.  Giddyap!)
• Toastiest Herman, the dog, needs a medication to relieve his arthritis pain and it costs more than Toastiest's meds.
• Birdman After not posting for a while, Birdman shares photos of grandkids and reports that he has qualified for another kidney and pancreas transplant. (Here's hoping you get them both soon.)
• Stayin' alive After not posting for a while, Kathy updates with positive news regarding her prosthesis and ability to walk and Fosrenol's impact on her phosphorus level.  She also shares a story about playing a bigot in a school play.
• The Adventures of Stacy Without An E also posts the 30 Rock video and wants to kiss Tina Fey. (Go for it, Stacy!)
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease Jeff's immune function is right where it's supposed to be but his sister, 2 weeks post-transplant, is still struggling with several issues, doctors are optimistic though.
• Jack's Kidney Adventure catches us up on family news; and marks his 3rd month post-transplant with a report on his progress in many areas. (We're glad to read that you're doing so well, Jack.)
•  Life on dialysis ... and now life after my transplant! Holly's TV appearance went well and she is in demand with the media; reports on more media and fundraising events. (A star is born!)
• On the Road to a Cure gives a link for the transcript of the latest Neurology / CNS & Lupus" webchat; and reports on an awards dinner that featured singer, Mary Wilson, from The Supremes. 
• I Am. Are you? has a link to a prize-winning and moving video about a lung transplant donor and recipient. 
• Transplant Alliance Jeffrey posts an emotional story of a friend who was going to walk in the Liver Walk in gold sneakers, but passes away before the event. (Our condolences to you and his family.)
• Dialysis Postings has a new look to his blog, courtesy of friends and a contest; he posts about food considerations for dialyzors.
• Chronic Chick Talk is going to a new neurologist and hoping for the best; describes her experience taking tramadol for pain.
• Bud's Ramblings had computer problems (I hate when that happens.) and is still coughing a lot.
• Precious Bodily Fluids provides links to the supporting materials he made for a board review course he taught.
• Renal Fellow Network links to a list of major drug companies ranked by revenue and points out where on the list the nephrology-related ones are (This sure makes one aware of how much money is involved in Big Pharma interests.); information on GBM collagens and Alport's Syndrome; also links to the 30 Rock song.
• Uremic Frost writes about a study suggesting that hypertension may be caused by the cytomegalovirus (CMV) - this could impact hypertension treatment; and critiques a new study that reports, Telmisartan plus amlodipine is superior to losartan plus amlodipine in reducing microalbuminuria in hypertensive patients with type 2 diabetes; and he reports on the European Renal Genome Project that aims to discover genes responsible for renal development and disease, their proteins and their actions; and the 30 Rock video.
  
• Renal tsar's blog has a Q & A regarding who should get MRSA testing.
• Free range fish sticks Don reports that Shiela gets home but is now in the hospital with fluid overload and congestive heart failure; and shares an article about the importance of dietary salt reduction.
• pkdmom2five has links to camping trip photo; a day of medical tests is lightened by a babysitter and a neighbor who brings stew and two pies.
• Mid-life ramblings Rain waters her garden and she has a power failure.
• As The Pump Turns has a dream where she learns that zombies are afraid of cats (I must go get a cat right away!)
• Living with PKD had to do a lot of peeing for a lot of tests, but her creatinine has stabilized and she hopes it is due to drug study she is in.
• DailyHemo - Home Dialysis Advocates Gus has redesigned his site (Excellent job!) and has many new videos to check out.  Here is a list of the ones posted in the last few days: "Portable Homemade Dialysis Machines?," "AV Acccess and Fistula First," "Cost Saving Portable Dialysis?" "Tour DaVita" "Davita CEO Meets With S. Illinois Univ. Carbondale Student" and a news article entitled "Home Dialysis Cooperative Shut Down in Beijing's Tongzhou District." (This site is definitely worth a visit.)
• Berns on Nephrology Jeffrey Berns, MD, from the University of Pennsylvania School of Medicine, talks about whether black ESRD patients will be at a disadvantage under bundled payment systems.
• Encompass Network Partners A new study suggests that aspirin may cut the risk of stroke in patients with peripheral artery disease; and another study shows that peripheral arterial disease of the legs is often overlooked even in patients with known heart disease under a cardiologist's care.
• Renal BizBlog A kidney transplant surgery is going to be "tweeted" live to raise awareness for organ donation. He gives links so you can tune in.
• Kidney Diet Tips Why mustard is  an excellent kidney friendly diet condiment and several recipes using it as an ingredient.  
• The Renal Unit Current renal tweets, news, and blogs.

30 Rock musical appeal for kidney donation

By Bill Peckham

The NBC show 30 Rock produced a start studded musical appeal for a kidney last night. The show is a comedy so the lyrics are pretty silly but it still stands as the most star studded appeal for kidney donation I've seen

The stars include Elvis Costello, Mary J. Blige, Clay Aiken, Sheryl Crow, Adam Levine, Adam Horovitz, Mike D., Sara Bareilles, Wyclef Jean, Norah Jones, Talib Kweli, Michael McDonald, Rhett Miller, Steve Earle, Moby, Robert Randolph, Rachael Yamagata, and Cyndi Lauper.

That's quite a line up. Let's hope they all stay engaged with CKD and continue their advocacy on a more serious note.

Dialysis & CKD Blog Report 5/13

By Miriam Lippel Blum

It was a busy but interesting few days in the blogosphere. Here are the CKD related blogs updated since my update on 5/10.   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 finds major math and analytical errors in a  Clinical Therapeutics paper that claims Medicare can save 1 billion dollars by increasing peritoneal dialysis usage.  He also makes the point that ultimately the paper shows conventional in-center dialysis is not only inadequate but more expensive than all the other modalities. (What scares me about papers with errors like that which make it into medical journals is that they are frequently then used to justify positions of Medicare that are not really in the best interest of CKD patients, and so many people suffer as a result.)
• Kamal Shah's Blog Kamal begins relating a story from his early days of renal failure when he tried a "miracle cure" as a last resort. (I want to read the rest of the saga. Shame on those quacks out there who take advantage of the desperation people feel when faced with CKD5 and other illnesses. If it sounds too good to be true then it probably is.)
• Kaply, Inc. Tracy gets IV iron, and a migraine but also a wonderful care package of goodies for her and her cats; wants to paint her apartment but detests painting, finds a fabulous website that sells large, removable wall decals.(Post some photos when you're done so we can check it out.)
• Toastiest holds off initiating dialysis for a while longer but is tired from low hematacrit due to bleeding cysts and shares a video of his happy dog, Herman.
• The Life of a 20-Something With Lupus has been having a tough time with pain and lack of sleep; her blood work gets screwed up so she must have it redrawn, and encounters scammers on eBay.
•  Life on dialysis ... and now life after my transplant! Holly writes about the downside to campaigning and some of the negatives of having a transplant; the upside to having a transplant and campaigning, compares her life now to pre-transplant and is very grateful for the gift; her segment of the TV documentary on organ donation airs tomorrow, and she has won awards for all her volunteer work. (Bravo, Holly, for all you've done to bring attention to organ donation)
  
• PKD & Dialysis ... Where I Tell It Like It Is has been tired and in pain, figures out a medication error was contributng to her problem.
• On the Road to a Cure Swine flu advisory for lupus patients (Basically the same as for everyone else, but realize that you are more prone to infections.); upcoming Walk for Lupus Now events in a number of places announced.
• I Am. Are you? reports an event held with a country radio station;
• Transplant Alliance a query regarding a forum to discuss transplant meds and side effects; Robyn worries about her grandfather on dialysis who just had a mild heart attack. He also won't consider a kidney donation from his family, which frustrates them; and TransplantAlliance celebrates three years tobacco free.
• Dialysis Postings struggles with dietary and fluid restrictions, along with flu-like symptoms.
• Precious Bodily Fluids writes about the difficulties patients with high blood pressure have in losing weight, though he recommends lifestyle changes he frequently also suggests bariatric surgery; a link to a cool site Wordle.net which is a web toy that generates “word clouds” from text that you provide (If you don't know what a word cloud is, go check it out.  It's fun.); presents a case report of a woman with sterile pyuria; and he learns a cool new word, anamnesis. (New to me, too.)
• Renal Fellow Network reports on two successful transvaginal nephrectomies; hears a highly technical talk about alpha and beta intercalated cells of the collecting duct (This was way over my head, but then I'm not a renal fellow.); and last but not least he explains the chemical mechanics of why if you are stranded on a lifeboat in the middle of the ocean, you are not supposed to drink the salt water, along with some interesting links about albatross nasal glands, shark rectal glands, and juicy details about tainted castor oil causing kidney failure.(Everything you always wondered about.)
• Uremic Frost provides a Twitter link where you can follow him or ask him a quick question; and a short but informative article he wrote about kidney stones that was just published by the Long Island Press.
• pkdmom2five is having lots of tests to determine source of abdominal pain, kidney function has dropped and she has low energy  but carries on the best she can.
• My Wife Has Lupus - Support for individuals whose family or friends have lupus has writer's block and posts a poll to find out who is reading his blog.
• Lemonade and Kidneys reports that her world is falling apart but she's not ready to write about it (I hope things get better soon), instead she shares that the woman she was helping (see her 4/29 post) is doing better, and a recipe for a delicious snack made with tortillas, pesto, and goat cheese. (Yum!)
• Mid-life ramblings After dialysis, she plants in her garden and bathes her dogs.
• The Ballad of Billy The Kidney reports on a kidney transplant recipient who joined the police force. (Just goes to show you that with determination one can reach unexpected goals.)
• As The Pump Turns discusses the very serious implications of the "Conscience Clause" (that the Bush Administration enacted on his last day in office) for healthcare providers and patients, and calls for it to be modified.
• Mushroom's Blog celebrates his niece's graduation from college.
• The Renal Unit Renal tweets, current news, and blogs.
• Encompass Network Partners General information on Peripheral Arterial Disease (PAD); and an article on Peripheral Vascular Disease.
• Renal BizBlog AAKP responds to Wanda Sykes' not-so-funny jab at Rush Limbaugh. She said she hoped his kidneys failed.(Not a nice thing to say even if you don't like his politics.)
  
• Team Teddy Bear announces upcoming events of the Hudson Valley chapter of the Walk for PKD.

Fail: Clinical Therapeutics paper gets the math wrong and misses the point

By Bill Peckham

Both RenalWEB and NephrOnline link to an article available online from Clinical Therapeutics: The Financial Implications for Medicare of Greater Use of Peritoneal Dialysis (pdf link). The headline is that Medicare could save 1 billion dollars a year if PD use increased to 15% of those with CKD5 who require dialysis. There is a problem with the authors' numbers.

The authors use the top line numbers from the 2007 (meaning 2005 numbers) USRDS Annual Dialysis Report of total average Medicare cost for someone using hemodialysis ($69,758) vs. the total average cost to medicare of someone using peritoneal dialysis ($50,847). They then assume that that on average someone who transitions from CKD 4 into the PD group instead of the HD group would save nearly $19,000 ($18,911) each year, as compared to the status quo or a trending decrease in PD use. That's not the right number for the sake of their scenario and they actually present the data that should have raised a red flag on their analysis.

That $69,758 average cost figure includes the cost of caring for people in nursing homes - skilled nursing facilities. Excluding those in SNF the difference in cost to Medicare of someone on HD vs. PD is about $11,400 which the authors breakdown in the paper - about $4,600 in saved hospitalization costs, $5,800 in separately billable medication costs and $1,000 in access management savings. However, it should be noted that some of the separately billable medication savings comes from having people who dialyze at home take oral Vitamin D rather than the more effective injectable Vitamin D.

Providing PD to people in SNF is highly problematic so you have to assume that growing the percent of people who use PD would create savings from switching people who are not in a SNF and who would have otherwise used HD. This would suggest $11,400 in savings rather than the $18,900 the authors use to get their savings of one billion dollars over five years. I agree that in general it would be a good thing if more people transitioning from stage 4 CKD to stage 5 CKD started with PD instead of conventional incenter HD but the savings touted in this paper are being overstated by about 60%. Still saving $600 million dollars over 5 years is a worthy goal. Which brings up another issue.

When I read the paper (which I very much appreciate having available online, in full) what I understand is how once again conventional incenter HD is expensive when compared to any other form of dialysis that provides a higher dose of renal replacement. Once again we have a paper showing better care under Medicare Part B results in Part A savings. Once again more dialysis saves money. Once again what we have here is a Part A/Part B issue and yet another paper highlighting Medicare's cruel accounting structure that inflicts needless costs and human misery because of President Johnson's and Wilber Mills' political scheme to expand access to healthcare.

It isn't that the use of peritoneal dialysis should grow so much as the routine use of conventional incenter hemodialysis has to stop. Three day a week conventional incenter hemodialysis isn't enough renal replacement - even PD is better.

Dialysis & CKD Blog Report 5/10

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 5/7.  Happy Mother's Day to all the Moms out there in blog world, and especially to my Mom whom I love dearly.  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 a blog report.
• Kamal Shah's Blog Kamal revisits his decision to not have another transplant but still  decides against it because Hemolytic Uremic Syndrome might recur; directions for password protecting folders for MAC; Kamal finds he can handle his kidney disease well but that the energy it takes makes dealing with other life annoyances difficult. (Taking care of CKD5 is a major job and we all have our limitations.)
• Kaply, Inc. Some details about Tracy's favorite things and she watches Hulu and Netflix while on dialysis; gives the Star Trek movie two thumbs up (I totally agree wIth you.); discusses  photo mojo with Fathead; bought an Ipod Shuffle and is disappointed with it.
  
• Drinking my way through Trader Joe's Wine says thumbs down to the Oceana Happy Face Syrah and pours it down the drain. (Your menu sounded delicious at least.)
• poetry on dialysis continued has two new poems, one about love despite pain, the other about form over substance.
• Toastiest sees irony in an old John Edwards campaign letter; and shares photos of his 13 year old cat, Aremid, who now has hyperthyroidism. (He's a beauty. I hope the vet can help him.)
• The Life of a 20-Something With Lupus Her arterial site bleeds and makes an awful mess all over her bed. (We've been  there, too. You have our total empathy.); a loving tribute to her Mom on Mother's Day.
• Becky Perry gives a positive review to The Military Wives’ Cookbook by Carolyn Quick Tillery.
• PKD Notes discusses the issue of whether fund-raising advocacy groups should focus on cure or support.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease His sister continues to improve post-transplant,  and his bronchitis is better so he can go visit her.
•  Life on dialysis ... and now life after my transplant! Holly's Donor Day Campaign was a tremendous success and her URL became the second most re-tweeted tweet in the whole world! She even got congratulations from the UK Prime Minister, Gordon Brown. (Way to go, Holly!); Holly visits family in Ireland and has a great time;  and promotes a TV documentary series following young people campaigning for issues they feel strongly about.
• PKD & Dialysis ... Where I Tell It Like It Is has photos from the 2009 Kidney Walk.
• On the Road to a Cure has links to World Lupus Day activities.
• Really, I'm as Old as I Feel? A nice Mother's Day tribute and prayer.
• I Am. Are you? June 12-13 will mark the first annual Donate Life Hollywood Film Festival with videos and films about organ donation.
• Transplant Alliance One blogger talks about how happiness can counter sickness; and another thanks his donor family for the miracle they brought into his life; and a Mother's Day tribute to a kidney donor Mom.
• Chronic Chick Talk wants to buy a one-piece swimsuit.  Lupus prevents outdoor swimming but she enjoys wading in an indoor pool; shares a Don McClean video for Music Monday. (American Pie is one of my faves, too.)
• Disability Prejudice And Civil Rights Watch has an essay entitled "Learning to Cope With the Medical System" that was written for World Mental Health Day; a link to an interesting video lecture by a man who survived severe burns and talks about the instincts we all have and suggests we need to study whether they are correct, not assume they are; and a critique of a NY Times "disability debate" that included no people with disabilities.(How typical...and stupid!)
•  Renal Fellow Network a satirical video about a large kidney transplant donation; an excerpt from a paper on the genetics of PKD cells; and a post on what causes chronic pain in people with PKD.
• Uremic Frost A study reports that dialyzors take the most pills of all chronic illness patients, an average of 19 per day, and doesn't even include IV dialysis meds. The study was sponsored by Shire, the company that makes Fosrenol. (Do ya' think this might play into noncompliance and patient burnout, maybe?); two videos from the American Society on Hypertension, one on how lower BP isn't always the best, and two, almost any BP medicine is better than none; and a  study presented at the ASH enforces the strong association between systolic BP and birth weight.
• Renal tsar's blog has a link to download a briefing pack with 90 slides about vascular and kidney disease; a report on Acute Kidney Injury, hyperkalemia,and safe use of insulin;  and a link to a report Tackling health inequalities: 10 years on that reviews developments in UK health inequalities over the last 10 years.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish)went to a talk  entitled "Mobilizing and awareness from blogs" at a book fair.
• Free range fish sticks Don is frantic as Sheila is far away and in the hospital with some as yet unnamed ailment.  He doesn't know how to deal with seeing the one he loves slowly and steadily lose her independence. (Remember, Dialyzors, how our condition impacts the ones we love.  Hug your Caregiver today.); Sheila goes to a different ER, is diagnosed with a kidney infection and Don is ready to drive the 200 miles to go bring her home (Now that is true love.)
•  pkdmom2five has a photo of Alisa for Grammie Kim.
• My Wife Has Lupus - Support for individuals whose family or friends have lupus wishes a Happy Mother's Day to his wife who is a great mom despite lupus.
• As The Pump Turns reflects on her relationship with her mother, ans is grateful for her; gives us a blow by blow description of her daily dialysis tech job; a cute video of her cat, Murray; Happy Mother's Day photo and a music video by Ben Folds.
• Kidney Community Emergency Response Important information  provided to clarify novel influenza A (H1N1) virus infection control recommendations that are specific to outpatient hemodialysis centers.
• Kidney Diet Tips "Is your Mom at risk for CKD?"  gives information and kidney-friendly brunch menu suggestions
• The Renal Unit Renal twitters, news, and blog links.

Dialysis & CKD Blog Report 5/7

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 5/4.   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 a blog update.
• Kamal Shah's Blog Kamal remembers a girl who uses an odd turn of phrase.
• Kaply, Inc. thinks Milla Jovovich is hot; has lots to do but can't because of rain (Time to move to a drier climate, maybe?); recounts some current things she enjoys.
• Toastiest a CAT scan reveals intracystic hemorrhage which explains his discomfort and shares some random thoughts including that he read about people who died because they ran out of viable dialysis access points.
• The Life of a 20-Something With Lupus has a really grueling class schedule that leaves her tired.
• Becky Perry  is still dehydrated and her BP is so low she requires medication to raise it.  She's worried. (Hang in there, Becky.  Maybe your PD prescription needs adjustment to take off less fluid?  Check with your nurse.)
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease his sister's new kidney is still "sleepy" post-transplant but she's up and walking a little; sister is having trouble eating and drinking and has heartburn, may go to a rehab. facility to regain her strength. (We wish her a complete recovery.)
• Jack's Kidney Adventure Jack gets a request to support the  Davita Patient Citizen efforts at  lobbying  Congress for  a bill that will have Medicare pay for immunosuppresive drugs for  the life of the kidney transplant.(Contact your members of Congress and ask them to support the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2009!)
• Life on dialysis ... and now life after my transplant! continues celebrating her dissertation and transplant birthday with family visits and a trip to Ireland;  birthday celebration and photos.
• PKD & Dialysis ... Where I Tell It Like It Is was the top fundraiser in the Kidney Walk and won 3rd in the banner contest (Great job!)
• On the Road to a Cure shares ideas for highlighting Lupus Awareness month (May); reports that Superjeweler.com will donate to the Lupus Foundation of America if you purchase a beautiful pendant set for Mother's Day (It really is lovely.); more Walk for Lupus Now events; and the LFA's  Neurology / CNS & Lupus webchat is May 13,  3 p.m. EST with guest expert, Robin Brey, MD, Professor of Medicine in the Division of Neurology at the University of Texas Health Science Center at San Antonio.
• Really, I'm as Old as I Feel? a wordless Wednesday picture entitled "Where is Abby?"
• I Am. Are you? recaps April activities for Organ Donor Awareness; and a really nice video about why Loyola University students "heart" organ donors.
• Transplant Alliance posts a request for some assistance with a dissertation project;
• Dialysis Postings has information on diet and nutrition for dialysis patients.
•  Bud's Ramblings He plants flowers in the toilets outside (Very funny photo, Bud.) and his PICC line is still itching.
• Disability Prejudice And Civil Rights Watch has a letter from the director of NAMI regarding support from the pharmaceutical industry, and provides links to use to critique it; more links to three timely articles and his opinions of them.
•  Renal Fellow Network reports on an alternative to the KDOQI Staging System for classifying the severity of reduced renal function.
• Uremic Frost reports on a study showing that primary care docs are not so good at treating hypertension; a book came out purporting that Napoleon died of kidney failure, not poisoning;  Fresenius Medical Care launches a national pharmacy that can provide dialysis patients with all of their prescriptions, over-the-counter medications and diabetic testing supplies directly through the mail at no additional cost; announcement of a new equation to figure out GFR that is better than the old one.
• Free range fish sticks has a story about a happy nocturnal dialysis user in Canada.
• Neophron's Senescence is recovering from jet lag, loves Kurdish songstress, Aynur Dogan and shares a video of her singing.
• pkdmom2five makes chocolate chip oatmeal cookies using tehina (sesame seed paste).  Cookies were great but tehina smells bad to her. (Personally, I love a little tehina drizzled on falafel and Israeli salad in a pita, Yum!)
• Mid-life ramblings had a quiet day (Sometimes quiet days are just what we need.); woke up at dialysis with a puddle of blood that leaked on her shirt (Bill P. calls these "Carrie" moments. and we've all had to change our bloody clothes one time or another so we don't terrify the public.)
• PKD World a link for action regarding the legislation to extend payment for immunosupressive drugs; and a link to a news story about altruistic organ donation.
• Kim Hoben's Blog hematocrit has tanked and she feels lousy, begs for a transplant
• My Chronic Kidney Disease recent test results are varied, some better, some not. He had hoped for more dramatic improvement.
• The Renal Unit current renal twitters, news, and blogs.
• Encompass Network Partners Zahid Ahmad, MD makes a great case for regularly evaluating the feet of diabetic hemo patients when they are at treatment to reduce amputations; and a Q & A on screening for peripheral arterial disease (PAD).
• Kidney Community Emergency Response reports that Merck told the CDC there will be a shortage of Hep B vaccine this year; Disetronic Medical Systems Inc. and FDA notified healthcare professionals about a defect in the “up” and/or “down” buttons of some ACCU-CHEK Spirit insulin pumps. Contact ACCU-CHEK Spirit hotline for a replacement pump.
• NephrOnline Blogs an excellent editorial by Mark E. Neumann reporting on major points made in  last week's nephrology conference on "ESRD: State of the Art and Charting the Challenges for the Future."
• Renal BizBlog reports on the start of Shad Ireland's “What Inspires You” bike tour.  (He Just rode through Phoenix! Go Shad, Go!!!)
• PKD Blog - Life with Polycystic Kidney Disease has a video of the Da Vinci robot peeling a grape (Remarkable, but I'm still not going to let that thing near me with a needle!)
• Writings along the cave walls - Ashbat's Lair has a Sephora gift certificate but the website gives her problems.

Dialysis & CKD Blog Report 5/4

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 4/30.   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 Blog update; Bill refutes skeptics regarding  H1N1 flu , points out how vulnerable incenter hemo patients are, and chastises centers that have inadequate emergency preparation (Unfortunately, this is likely most of them. This should be a wake-up call. Even if this round of flu eases up we must be prepared for pandemics.)
• Kamal Shah's Blog Kamal enjoys devotional Sufi music and provides a link to a Hindi karaokie site; gets too much information on Facebook.
• Kaply, Inc. has been spending some time outdoors on the patio enjoying cold drinks;
• Toastiest Mom's attempts at making Toastiest feel better about dialysis aren't helping; so she turns to Herman, her dog, for some video inspiration.  He wasn't too motivated.  (But he is a sweet looking dog with a fine orange collar.)
• Hasten down the wire reports on the Merck companies fake medical journals; and yearns for a more European type social system.
• The Life of a 20-Something With Lupus has problems with her phone lines (Don't you hate when that happens?)
• Nitey Nite- a nocturnal dialysis blog hates having to deal with new personnel and staff turnover in her unit is frequent.  (It is hard having to adjust to the newbies all the time and losing continuity of care is a serious safety issue.)
• Becky Perry discovers her weakness was due to dehydration and adjusts fluid and treatment accordingly.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease Her sister received a new kidney and is doing well (Congratulations! May it work well and last a long time.); and reflects on the anniversary of her own kidney transplant how her life and health has improved.
• Transplant Alliance reports on a transplant bowl-a-thon; has a slight headache.
• Kevin’s Blog has the dramatic birth story (with photos) of Kevin and Lisa's new baby named Faith Randall Carlson.  She was born at 12:03 PM on 4/28/2009,  weighed 8 lbs, 11 oz, and was 20.5″ long. She is named in honor of brother Randy, who was Kevin's kidney donor.  (She is a beauty! May she always be healthy, happy and a blessing to her parents.  Congratulations!)
• Life on Dialysis finished her dissertation and celebrates with drinks and dancing.(You go, Girl!  Congratulations!)
• Dialysis Postings has concerns about swine flu and even though it isn't yet in the Phillipines thinks it important to be prepared.
• Chronic Chick Talk is making adjustments to her blog site; and shares a music video.
• Dialyse This might get a kidney in a year or two and is ambivalent.
• Bud's Ramblings need hypoallergenic bandaids for his medication port and worries whether a needed medication will be approved by his insurance.
• Disability Prejudice And Civil Rights Watch writes more about psychophobia which he defines as individual prejudice and discrimination against people with or who are perceived by others, correctly or not, to have a psychiatric history or diagnosis; an article on the possible dangers of reevaluation counseling; a lengthy post on the polarity in mental health politics.
• Precious Bodily Fluids reports on a small controlled trial of prednisone, cyclophosphamide, and cyclosporine in lupus membranous nephropathy; and comparative studies of clevidipine to nitroglycerin, sodium nitroprusside, and nicardipine for acute hypertension treatment in cardiac surgery patient;  the FDA approves a polypill (three meds in one pill) for hypertension.
• Uremic Frost the FDA "cuts" Hydroxycut because it causes life threatening liver problems; development of a possible urine screening test for coronary artery disease; a study from New South Wales showed the risk for lung and urinary tract cancers, but not prostate cancer, was higher among men with kidney disease; a study that reports Hispanic dialysis patients suffer from a higher incidence of catheter related bacteremia compared with African Americans; and last,a study that seems to show that hyperuricemia appears to be and independent risk factor for all-cause and CVD mortality, but not kidney failure. 
• Renal tsar's blog a Q & A about hemo nurses and work permits;
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish)More on the psychology of dialysis patients but feels there is not enough research done in this area.
• Free range fish sticks Sheila is driving herself to Tennesee for some "nana" time that she badly needs.
• Neophron's Senescence enjoyed the Admiral's Lounge on his route back home and hopes to go back to Singapore sometime.
• pkdmom2five  updates on family activities and has an upcoming blood test scheduled.
• Mid-life ramblings exhausted herself with gardening and ended up late to dialysis because she slept through her alarm clock.
• Chronicals of the PD Warrior finds some fun websites and blogs: a pen reviewer, a person who is an expert in travel packing, and a video of an extraordinary bicyclist (Very fun, check it out!); and is crazy about Susan Boyle.
• As The Pump Turns has coffee served by half naked waitresses; and notes the fifth anniversary of a life changing time.
• Kim Hoben's Blog frustrations with getting a kidney.
• Living with PKD a post on pregnancy and belly buttons, also her kidneys have more cysts causing discomfort; forgot to do her 24 hr. urine collection and has a medical appt. in Boston for more tests.
• Biologically Safe Water Filters reports on a study showing the tremendous savings for US hospitals from preventing hospital acquired infections.
• Encompass Network Partners diseased leg arteries may trigger heart attacks and strokes; the importance of diabetics having foot exams.
• Kidney Community Emergency Response resources for emergencies - including swine flu are on the KCER website.
• I'm-u-no-logic after a long writing hiatus, I'm-u-no-logic returns with an intense poem about frustration with healthy visitors who waste what they have.
• The Renal Unit current renal twitters, news, and blogs.

H1N1 concern v. skepticism

By Bill Peckham

I just listened to RSN's new H1N1 KidneyTalk with Lana Kacherova, RN, Quality Improvement Director for the Southern California Renal Disease Council. Stephen takes the skeptics point of view expecting this will be another crises that doesn't amount to much - mentioning Y2K and the H5N1 "Bird Flu" virus. This is a pretty common view, and often this point will be made along with the point that seasonal flu kills tens of thousands of people every year, yet H1N1 has caused one confirmed death in the US. Therefor, how can H1N1 be a bigger problem than seasonal flu? (which is no big deal). I'd tell Stephen that I am worried, this is a bad situation particularly for those on incenter hemodialysis.

Flu is always a problem and we put a lot of effort into minimizing its impact each year through community vaccination programs that target at risk groups - such as people with chronic kidney disease. This flu has an almost wide open population to infect (there has been a report that people over 60 may have some natural immunity (probably from being infected during the 1957 H1N1 1918  echo pandemic) which would be great news for our dialysis population) and that is what defines a pandemic - a communicable disease, normally a flu virus (SARS, hepatitis are nonflu examples) which is spreading from human to human, across the globe. It's clear this is happening, that makes the H1N1 virus a pandemic virus.

I think we should expect that WHO will announce a stage 6 pandemic soon, the virus is sustaining human to human transmission - which means on average each person the virus infects goes on to infect more than one other person. That in itself does not create an health crises, the unanswered question is severity. Does the virus cause severe illness? Which is really a three or four part question: how many people will get sick? (Over what period of time?) What percent of those who get sick will need hospitalization? And of those, what percent will die? If, as we all hope, the virus does not cause serious illness then we can thank providence for this wake up call but at this point there is no way to know that that is how this will turn out.

We still don't know what this virus will look like in people who have not traveled to Mexico or been hanging around people who have traveled to Mexico. People with a Mexico connection - the first cases - have been treated with Tamiflu; over the next weeks we'll find out what course the disease takes in people who are blindsided by this and who do not get Tamiflu within 48 hours of symptoms. It is very good that this virus responds to Tamiflu but that will create its own problems around matching supplies with demand if the H1N1 virus turns out to be more severe than our hopes.

It is generally assumed that this flu will take the summer off, most flues go into a lull this time of year, but that does not have to happen. The influenza virus is extremely unpredictable. It is prone to mutation, it could get better or it could get worse. It could go away. It could stay and build into the summer. Or it could go and then come back. We just don't know. We have three modern examples of pandemic flu: 1918; 1957; 1968. How well could you predict a hurricane or an earthquake if you only had three examples? The three pandemics from the last century are three points on a continuum, there are more severe pandemics than 1918 possible, just as there are pandemics possible that are milder than 1968. We don't yet know where 2009 will end up on that continuum but it will be there, this is an historic event.

I would tell Stephen that it is too early to call this one and that the provision of dialysis is still threatened. As I have written few providers took preparation seriously. The Northwest Kidney Centers has posted their Pandemic Guidance for NKC patients and NKC staff; NKC intends to continue providing dialysis to their patients in the normal time and place - they have N95 masks, Tamiflu and pandemic policies and procedures in the units and ready to go. NKC is one of the few dialysis providers to have an established, close working relationship with their local emergency planning agency. NKC has thought about what they will do in a pandemic, which is more than most providers can say.

Right now is a hell of a time for dialysis providers to be making first contact with their local emergency planning entity. Dialysis providers have failed if their plan is to not dialyze their patients with flu like symptoms. They have failed as dialysis providers if their plan is to send patients with flu like symptoms to the local ER. If this turns out to be the least bit severe then I think the risk of failure is high and that is what is keeping me up at night.

Dialysis & CKD Blog Report 4/30

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 4/27. You will note that more references to the swine flu are appearing both from advice for avoiding flu exposure and persons who have it.  So be careful out there, and be prepared.   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 the importance of N95 masks for dialysis patients in this  time of pandemic flu concern (Very important information for those getting treatment in-center.); Northwest Kidney Centers offers in-center patients a trial run of more frequent dialysis. (NKC again puts its patients' health needs and interests first.  If only the rest  of the industry would!)
• Kamal Shah's Blog Kamal waxes poetic over his favorite Indian breakfast treat, the sublime idli  (I've never tried one but I sure do want to now!); and muses about the difficulty of finding a good computer systems analyst.
• Kaply, Inc. has a small fever but hates being fussed over; and has a dialogue with a fathead who hopes swine flu will help him lose weight.(I think Jenny Craig would be a better idea.)
• Toastiest is having trouble finding a primary care doc, nobody is accepting new patients. (I have had that problem, too. I think it's everywhere.  Specialists make more money so there are fewer and fewer primary care physicians coming out of the med schools.)
• Stayin' alive is struggling with high phosphorus even though she has changed her diet drastically and the medication prescribed is way too expensive. (Some companies have assistance programs available if you can't afford their meds, maybe that company does.)
• Becky Perry gets an extension line that gives her more mobility when she does her PD treatment; and feels low energy and depressed -- maybe she needs more iron.
• The Adventures of Stacy Without An E Stacy's newly installed  fistula has a hematoma - he calls it his fistuloma - and is frustrated by arrogant, dismissive doctors.(I hate doctors like that,  They bring out my rage.)
•  Jack's Kidney Adventure Jack returns to work and readies the office and personnel for the presence of an immunosuppressed person.(Some good ideas here for transplant recipients returning to the working world.)
• Let us Consider One Another thanks for your prayers.
• On the Road to a Cure has announcements of upcoming Lupus walks events.
• Really, I'm as Old as I Feel? Had a wonderful weekend with her daughter visiting an aquarium. (I love the dolphins, too.  They add "porpoise" to life!)
• I Am. Are you? shares a poignant letter from a young kidney recipient.
• Transplant Alliance steps to preventing the flu.
• Dialysis Postings writes about the dialysis patient's need for love and emotional support.
• Dialyse This anticipates a long, annoying and painful lab appointment; and it is all that; has the swine flu along with a black and blue arm. She thinks one of the docs in her unit looks and acts like Hawkeye from "Mash".
• Bud's Ramblings He gets a gift of bound blog pages and is to see infectious disease doc; needs to get a PICC line and 10 days of IV antibiotics.
• Disability Prejudice And Civil Rights Watch has a link to an action report on the "Community Choice Act."
• Precious Bodily Fluids Ultrasound classification of renal cysts.
• Renal Fellow Network posts on How to do the water deprivation test - useful in the workup of patients with polyuria under certain situations; Lithium induced hyperparathyroidism; and combined kidney/bone marrow transplants (These can allow a transplant recipient to go without immunosupressive drugs.)
• Uremic Frost has a brief review of kidney stones; and a shocking story about a woman who faked kidney disease to get money. (Shame on her.)
• Renal tsar's blog writes about his visit to the Liverpool Hospital's dialysis unit and is pleased to ses a rise in AV fistula use and a fall in the MRSA rate, also they established a database of units worldwide that will take UK patients who are going abroad for holiday or business; reports on new quality initiatives with fun name acronyms, includes a link to a slide show, High Quality Care for All, that aims to ensure that quality is the organizing principle for kidney care
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) was invited to speak at a book fair; and is going to partner with a German psychologist who understands dialysis issues to add his perspective to the blog.
  
• Neophron's Senescence had a wonderful Bangkok vacation and shares some video footage.
•  pkdmom2five Happy Sweet Sixteen to a friend.
• Lemonade and Kidneys is moved to start a fundraising campaign for an unfortunate woman.(Make sure she's not faking like the woman mentioned in Uremic Frost's blog above.)
• Chronicals of the PD Warrior recommends a fellow blogger whose writing she enjoys and provides links.
• As The Pump Turns Kim hung out in Chicago with two great people she met through Blog Talk Radio ( Annie and Burl Live!) and also got to meet the cool  Doctor Anonymous (Blog Talk Radio luminary); and gives a public service anouncement about how to avoid the flu.
• My Chronic Kidney Disease finds his motivation to live: his six year old daughter tells him she wants him to live a long time. (One of the best reasons I've heard to hang in there.)
• Encompass Network Partners Diabetics shouldn't wear flipflops, not enough foot protection.
• Kidney Community Emergency Response has swine flu updates and tips for avoiding the flu; postponing their meeting in light of flu developments; important links and guides for developing an emergency plan in this flu situation.(KCER is the place to check for most relevant flu news for the renal community.)
  
• Renal BizBlog reports that a California dialysis unit has the first suspected patient with swine flu and suggests people check with KCER (see above site) for updates regarding the renal situation and the flu.
• Team Teddy Bear after a long absence has decided to try to write again (Welcome back!  We'll be checking in on you, so keep writing.)
• The Renal Unit current renal tweets, news, and blogs
• The Life of a 20-Something With Lupus Miz Flow encounters an emergency situation on the subway that brings up issues of crisis management, faith, swine flu, and reflections on how hard it must be for her parents when she has been in pain. (Wow, Flow, what a scary story!  It was nteresting to note all the different responses people had to a person in distress.)