Dialysis from the sharp end of the needle

Dialysis & CKD Blog Report 12/30

By Miriam Lippel Blum

Tomorrow night the year will turn bringing us 2010. I hope it brings you all joy and health. I hope it brings wise decisions by our leaders. But whatever it brings, let's all continue working towards the betterment of our health and the world. And for goodness sakes, have some fun, too! Happy New Year! Here are the CKD related blogs updated since my last report on 12/27. 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 is going on the NxStage Freedom cruise and posts a news video about Pat & Ralph, another adventurous couple who are also going (Bon Voyage to all the NxStage cruisers! Enjoy your freedom and the independence that optimal dialysis with NxStage can bring. We look forward to photos and stories to enjoy vicariously.); the blog report. 
• Kamal Shah's Blog Kamal plays a rowdy family game of Taboo and an ordinarily quiet relative really got into the game; a description of Kamal's morning swim routine.
• Toastiest Toastie may have a possibility for a kidney transplant and discovers that his insurance policy has a clause that disallows payment for a transplant with an unrelated living donor, he may be able to change policies. (This is unconscionable! Has it not occured to this insurance company how much a transplant would save over perpetual dialysis? I hope you can change policies.)
• The Life of a 20-Something With Lupus Flo describes her last day in Florida which included dialysis, Dairy Queen, mall shopping, and flea markets. She also makes a point of saying that she looks forward to going home to her nocturnal dialysis because in-center, three times a week treatment leaves her not feeling well. (It's a big difference. I wish more people who do conventional in-center HD knew how much better they could feel with more dialysis.)
• Transplant, Tantrums, & Tiaras Holly's friend, Jessica Wales, gets a double lung transplant.
• On the Road to a Lupus Cure New research shows that urine components may indicate the severity of lupus nephritis possibly allowing for diagnosis without a biopsy in the future; how you can help promote Julian Lennon's album "LUCY" and raise funds for Lupus Foundation of America.
• I Am. Are you? has a quick look back at some Donate Life Illinois highlights from the past year.
• The Ins and Outs of Dialysis John and Gayle had a great Christmas with their grandchildren and dressed up like Santa Claus, photos.
• Dialyse This Cassie is into Rock Banding/Guitar Hero-ing and decides she needs a new TV.
• Linda Gromko MD kidneycare Steve gets a new Primary Care Physician and Linda explains the importance of having one.
• Renal Fellow Network lists some complications of erythropoietin use.
• Uremic Frost has a chart showing the top causes of death in 2006-2007. No change is seen in a primary renal cause which remains number 9 in the top 10; a CDC study shows that since 1996, the rate of diabetes-related CKD5 has declined.
• Pediatric Nephrology has posts on the role of intradialytic parenteral nutrition; the differences between animal and human models in Acute Kidney Injury; photo and information about Renal Angiomyolipoma; a CKD5 patient finds a kidney donor through Facebook; links to Bill's post about the Freedom Cruise; therapeutic strategies for Encapsulating Peritoneal Sclerosis; a study on the risk of exit-site infection following topical mupirocin and sodium hypochlorite application.
• pkdmom2five has links to some articles about courtship vs. dating for religious Christians; lessons about dress and appearance.
• Dialysis and Me shares videos from Christmas eve - JoJo the Boxer enjoying her new bone, nephew unwrapping his Transformers gift and family having a wrapping paper ball battle; a review of video game "Fairy Tale Fights"; Dialysis Guy (video) reviews "Avatar" and relates Christmas activities; a video of Barry making a Warhammer model.
• Rob and Danielle's Kidney Blog Danielle made Rob a banana split for dinner (Yum, I want one, too!); a potential kidney donor for Rob turns out to be the wrong blood type but Rob is still grateful for the offer and prays that a matching donor will come his way sometime.
• ....And Bells on Her Toes bought a 54" plasma TV at the Boxing Day sales.
• The inner game of PKD Richie continues his PKD story with descriptions of his early symptoms and EPO injecting.
• Michael W. Newman Michael's dialysis unit is understaffed again, an unacceptable situation that must be addressed.
• Unfiltered Hope Darren continues to heal from his kidney transplant, he and Sara are busy with life and grateful.
• Encompass Network Partners has an article explaining why many diabetic foot amputations are preventable and what can help.
• Renal BizBlog DaVita CEO Kent Thiry says why he's nervous with the healthcare legislation and its possible ramifications on dialysis care.

Dialysis & CKD Blog Report 12/27

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 12/24. 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 graphic from National Geographic's blog that shows how the US compares to the other developed nations in terms of dollars spent and life expectancy...the US spends more than twice the average yet is below the average for life expectancy.  Bill thinks the US healthcare system is perverse. (I agree with you.)
•  Toastiest Toastie rates the movie "500 Days of Summer"  -- it made him feel terrible and he hated it.
• Birdman Sparrow posts a silly (and slightly deranged) animated Christmas video; his wife saved his life when he was unconscious from low blood sugar.
• The Life of a 20-Something With Lupus A stranger tries to enter Flo's hotel room, all is later resolved (it was the manager) and she goes shopping by the beach;  had a great time at Disney World and Epcot Center, has dialysis at 7AM tomorrow morning. 
• Jack's Kidney Adventure Jack gets some sort of flu and has to go to the ER to make sure his new transplanted kidney is okay, it is and he recovers in a couple of days; enjoys time at a B&B in Columbus.
• Transplant, Tantrums, & Tiaras has a photo of Holly sporting a winning smile in her Santa hat.
• Linda Gromko MD kidneycare Linda and Steve love movies. went to see Invictus and found inspiration in the same poem that helped Nelson Mandela persevere despite adversity.
• Renal Fellow Network discusses the association between phenytoin and hypocalcemia.
• Uremic Frost Excerpts from an interview with DaVita's CEO Kent Thiry where he discusses his view on the current healthcare legislation and the company's explosive stock growth; because of patent infringements, the U.S. District Court in Boston issued a permanent injunction barring Roche from selling Mircera in the United States, but a licensing agreement with Amgen will allow it in mid-2014; a study shows that day napping and short night sleeping were found to be associated with a higher risk of the development of diabetes.
• UKidney posted a discussion of skin problems in chronic kidney disease; an argument as to why KT/V may not be the best measure of dialysis adequacy; researchers in Boston have identified the genetic cause of focal segmental glomerulosclerosis which mat eventually lead to treatment; a new study finds that the gap between supply and demand for donated kidneys for transplant is widening in Canada.
• Pediatric Nephrology has his  Pediatric Grand Rounds with links to the articles highlighted from the last two weeks.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) In response to a commenter's accusation about improper care at a Fresenius unit in Argentina, Alejandro researches the matter and meets with Fresenius representatives at their Buenos Aires headquarters for an explanation.
• pkdmom2five has a wonderful Christmas, including tamales, a church service, family, football, and movies.
• Kidney Notes - Exploring the Intersection of Medicine and Technology has a link to an article that logged all the sleep interruptions experienced by a  patient in the hospital during a 12-hour period;  a link to an article with tips on how to get what you need from your doctor.
• ....And Bells on Her Toes describes how her young daughter wakes up the family in the morning.
• Jenna Franks Jenna was able to get home after 27 hours in 4 countries, as the snow in Europe created many delays. She and mom, Karol, had a great Christmas together.
• DailyHemo - Home Dialysis Advocates New Video: Fresenius Medical Care Dialysis in Chicago.
• Transplant Alliance Barb wishes everyone a Merry Christmas.

Dialysis & CKD Blog Report 12/24

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 12/21. 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 Peter critiques the US nephrology community for not embracing optimal dialysis;  the blog report.
• Kamal Shah's Blog Kamal struggles with life expectancy questions as he looks at pension plan options; his bone pain is getting worse, nephrologist feels it may be from too low phosphorus; gives his suggestions about what must be done in Telangana, India.
• Kaply, Inc. Tracy's cable box goes down, doesn't need to see the nose doctor for 6 weeks, and got her H1N1 shot before she heads out for holiday travel.
• Hasten down the wire Michael critiques Google's non-answers when it comes to questions of user privacy.
• The Life of a 20-Something With Lupus Flo is vacationing in Florida, hotel is nice but almost slipped on newly washed carpets, likes the free wi-fi, checks out the dialysis unit she will go to and plans a retail therapy day in Orlando; has seafood at Winn-Dixie, describes her shopping day at the outlet mall; dialysis went well and now she's off to another mall to shop, tomorrow she goes to the beach.
• On the Road to a Lupus Cure Winter weather skin advice for those with lupus; the Lupus Foundation of America launched a Facebook fan page.
• Really, I'm as Old as I Feel? Rob has photos of and describes their family's last minute homemade Christmas gifts; a cute photo of Rob and daughter, Abby, enjoying a snow day.
• I Am. Are you? has a description of the Donate Life Rose Parade float and the people who make it happen; Donate Life Illinois and mascot, Morgan D’ Organ, wish everyone Happy Holidays and safe travels!
• Linda Gromko MD kidneycare Linda's family Christmas letter reviews the medical difficulties of the year,  hopes for a smoother, "medically boring" 2010 (We wish that, too, for us all.)  celebrates their resilience, understanding, love and commitment; Linda and Steve become acutely aware of their blessings in the light of friends' tragic loss of a child.
• Precious Bodily Fluids discusses the conflicting data on CKD and injury caused by contrast-medium exposure.
• Renal Fellow Network presents a differential diagnosis of red urine; describes a case of a patient who developed acute renal failure shortly after undergoing attempted Angiojet therapy for a pulmonary embolus; announces the winners of the Mt. Rushmore of Nephrology poll.
• Uremic Frost has a really gross video of a man drinking fat; a study shows for a person with known or expected heart disease exercise hypertension is actually good, but for a healthy person exercise hypertension can be bad.
• UKidney describes the combined kidney/bone marrow transplant protocol used at the  Massachusetts General Hospital Kidney Transplant Program They transplant both kidney & hematopoeitic stem cells from the same donor, which will hopefully induce a state of immune tolerance that allows a sparing (and ideally a complete cessation) of immunosuppressive drugs without inducing rejection.
  
• Pediatric Nephrology has a new section on his website featuring Powerpoint presentations on important nephrology topics - the first is on H1N1; a recent paper from New York  discusses the diagnostic yield of renal biopsies by a retrospective review; a study shows that pediatric burn patients with acute kidney injury have a higher mortality rate.
• pkdmom2five her son Nick's BP was high, doctor adjusted the medication; describes many Christmas activities, had a pleasant chat with a member of her former church.
• Dialysis and Me Barry plays an an impromptu Apocalypse game with his Warhammer figurines and has a blast, photos of the event.
• The Ballad of Billy The Kidney John wishes "the Top of the Season" to everyones, whether it be Christmas, Hanukkah, or Festivus. (Back at ya', Mate!  Cheers!)
• ....And Bells on Her Toes Her husband has an angiogram, results show some plaque deposits that may cause problems in the future but don't impede transplant plans; she posts a video of  "I want a hippopotamus for Christmas" (Really cute song.) and a saga about getting Zhu Zhu Pets (mechanical hamsters without the mess) for her children for Christmas - she is not a fan of Toys R Us anymore.
• The inner game of PKD Richie continues telling his PKD odyssey with how me met his wife.
• My New (transplanted) Kidney Journey Al's labs are stable, Cellcept is giving his bowels less trouble, solved his insurance troubles, and is starting back at work.
• Berns on Nephrology Dr. Jeff Berns reviews the results of a randomized controlled trial examining the effect of a low-protein diet in patients with chronic kidney disease.
• Renal BizBlog The Centers for Disease Control and Prevention posted the proposed guidelines for prevention of Intravascular Catheter-Related Infections (which included information specific to hemodialysis catheters) for comment on its Web site  - the deadline for comment has passed but nurses would like it extended so that renal nurses will have a chance to contribute based on their expertise.
• Kidney Diet Tips suggests using the days between Christmas and New Year's to revisit your CKD management plans so you're read  for a healthy 2010.

Dialysis & CKD Blog Report 12/21

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 12/18. 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's vote for the best non-dialyzor comment to CMS goes to a renal dietitian from CA;   while the immunosuppressant coverage wasn't included in the Manager's Amendment, a GAO study of including dialysis-related oral drugs in the dialysis payment was.  This probably means oral drugs won't be in the PPS for now, and hopefully immunosuppressant coverage will be part of the final merger of the House and Senate bills.
• Toastiest Toastie is traveling and resolves to institute life changes when he returns.
• Hasten down the wire Michael critiques the politicking that pitted immunosuppressant drug coverage against funding for dialysis care; and expresses his great disappointment with President Obama's first year actions.
• The Life of a 20-Something With Lupus Flo is on a plane headed to Florida for vacation. (Have a great time, Flo!)
• I Am. Are you? shares a nice reflection post from heart and kidney recipient Bill Coon.
• The Ins and Outs of Dialysis Gayle and John wish everyone Happy Holidays and share family photos chronicling their year.
• Chronic Chick Talk has a music video of "Silent Night;" suggests that a grandfather clock would make a good wedding gift and gives a source where to get one.
• Dialyse This Cassie marks four years on dialysis and has a lot of last minute holiday shopping to do.
• Precious Bodily Fluids shares the sign he has in his offices to alert patients to the problem with clopidogrel (Plavix) and omeprazole.
• Renal Fellow Network important differences between mouse and human Acute Kidney Injury when considering the warm ischemia-reperfusion model.
• Uremic Frost 30 Rock actor, Grizz Chapman, has stage CKD5 and is not sure a transplant is the right way to go for him; a son finds a kidney donor for his father through Facebook; 24 hr. ambulatory blood pressure monitors can disturb patients sleep patterns and, hence, blood pressure so results from these devices must be carefully evaluated given this information.
• UKidney a study looks at the ratio of unnecessary vs necessary procedures in regard to fistula surgery; China will in the next two years set up a data bank of Chinese renal failure patients who might be in need of organ transplants - China currently has 1 million such patients.
• Pediatric Nephrology shares an encouraging study from Germany on infants with renal failure; a differential diagnosis for hypertension along with metabolic alkalosis and hypokalemia; research shows that urine might be the next fuel for all our houses, cars and appliances; a study from India done with pediatric CKD3-4 patients comparing short-term efficacy of sevelamer versus calcium acetate.
  
• Neophron's Senescence returns from his cruise, where he met Howard Dean, just in time to see the inadequate Senate healthcare bill get signed.
• Kidney Notes - Exploring the Intersection of Medicine and Technology Things he learned in medical training that influenced him in his non-medical life.  
• Team Teddy Bear Bob gets the notification that he is not a match to donate a kidney to his wife so he's starting the process of getting himself into a Donor Swap program.
• Biologically Safe Water Filters writes how Nephros Dual Stage Ultrafilters can save hospitals money and aggravation by preventing "Superbug" infections.
• Kevin’s Blog Kevin reflects on his life one year post-transplant and finds religious significance there for the season.

Dialysis & CKD Blog Report 12/18

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 12/15. 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 shares the comment he sent to CMS about the Proposed Payment System and notes the lack of trust evident amongst all the stakeholders.
• Kamal Shah's Blog Kamal wishes that he had been able to travel and see the world but CKD5 ended that dream for him at the age of 22 (Maybe you can go on a dialysis cruise sometime like a whole bunch of NxStage users are in a couple of weeks.); he had a DEXA scan which showed he does not have osteoporosis so that is not the cause of his bone pain, the pain is now impinging on his ability to do daily activities.
• Kaply, Inc. Tracy's phone is on the fritz and she is really mad about it, so watch out; gets her phone replaced, her surgery went well, and does weird things when under the influence of pain meds.
• Toastiest Toastie posts videos of Howard Dean and Al Franken talking about the healthcare reform bill; a video of Al Franken pwn-ing Joe Lieberman.(If you don't know what "pwn" means, go Google it, like I did...and I dare you to pronounce it.)
• Hasten down the wire Michael is disgusted with Chase's penalization of responsible credit users; explains why he is replacing his TiVo system and with what; critiques the Huffington Post's new online publishing business model.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease encourages an elderly man with CKD5 to get a fistula, discusses how attitude is everything when it comes to dealing with chronic illness.
• On the Road to a Lupus Cure has a video of Julian Lennon and James Scott Cook explaining the story behind and singing  the song, LUCY.  A portion of the proceeds raised by the song will be donated towards lupus research; Amanda Davenport describes meeting Julian Lennon at the CBS Early Show.
• Really, I'm as Old as I Feel? Rob and his beloved, Anny share a birthday, a very young photo of the birthday boy and girl. (We wish you both many happy, healthy years.)
• I Am. Are you? A woman describes her emotional meeting  with the recipient of her husband's kidney; Donate Life Illinois is giving out 40 free pairs of tickets to a private Phil Vassar concert in Chicago on Jan. 6, details here. 
• Chronic Chick Talk suggests that men do their holiday shopping online and gives a link to a website that sells nice watches, always a good gift. 
• Dialyse This has a meeting set up with a radio personality who wants to interview her for a story, has lost a little dry weight, and isn't sleeping very well.
• Linda Gromko MD kidneycare Linda recommends that caregivers do strength training (weight lifting, resistance training, etc.) to increase physical strength and emotional endurance.
• Precious Bodily Fluids Joel recommends a web service he likes for making booklets; describes a case of tenofovir toxicity and how he came to that diagnosis; discusses the studies on the impact of IV contrast on residual renal function; links to an article on the dietary causes of gout.
• Renal Fellow Network posts on the clinical signs of transplant glomerulopathy; reports the results of last week's poll on IgA Nephropathy, and has next week's poll asking which prominent nephrologists are/were most prominent to the field? Write-ins are acceptable.
• Uremic Frost The Medicines Company announced a voluntarily recall of eleven lots of Cleviprex (clevidipine butyrate) injectable emulsion due to the potential presence of visible particulate matter which has been observed in some vials during a routine annual inspection; a study shows that a higher hemoglobin level was associated with a significant 26% reduced risk of death or the initiation of dialysis, challenging the results of the CHOIR study; recommends UKidney as a resource and found a free online blood pressure log; video of the RPA Public Policy in a Minute.
• UKidney has a post explaining hemoperfusion; and an article on the lifting of Australia's five-year ban on the transplantation of animal cells and organs into humans.
• Pediatric Nephrology has information about a study on "Alternative complement pathway activation in D+ HUS"; and a report on experience with combined liver kidney transplants from a center in Germany.
• Neophron's Senescence describes the seminars and discussions he has had on his cruise, talked to Howard Dean about healthcare reform.
• pkdmom2five celebrates her anniversary, shares photos; photos from "The Messiah."
• Lemonade and Kidneys Ruth suggests her friend Leigh's website for last  minute gift ideas.Leigh hand crafts beautiful jewelry and ornaments out of silver and copper, with designs ranging from the demure to the baroque, photos of some of the jewelry.
•  The Ballad of Billy The Kidney John reminds people not to overdo their fluid limitations on the holidays and links to a story from the Liver Transplant Unit at Flinders Medical Centre in his new home of Adelaide, Australia.
• ....And Bells on Her Toes The caulking from newly installed windows gives Kelly a headache; shares a really sweet Dear Santa note her daughter wrote.
• The inner game of PKD Richie tells Part 1 of his personal 45-year PKD odyssey.
• Kidney Community Emergency Response has a Q & A with pertinent information about the recall by Sanofi Pasteur of some lots of pediatric H1N1 vaccine; announces the KCER 2010 Summit will be held April 13 in Orlando, Florida.
• Renal BizBlog On Dec. 10, the Medicare Payment Advisory Commission met to discuss dialysis payments, among other topics, and recommended a 0.9 percent composite rate increase for 2011. MedPAC will vote on the recommendation at its January 2010 meeting.

Dialysis & CKD Blog Report 12/15

By Miriam Lippel Blum

Tomorrow is the last day left to make your comments to CMS regarding the proposed payment rules.  The deadline is December 16 at the end of business hours EST. Make your voice heard!  It matters.

It has been an interesting week - 13 people received kidneys in a major swap/donation that took place over 6 days; at the same time this is happening the US Senate is deciding whether to increase immunosuppression funding by reducing funding for dialysis.  What the future holds for both US dialyzors and transplant recipients may be decided soon.  I find myself frightened for us all as I desperately hold on to my life with dialysis with the same passion as a transplant recipient would protect their new kidney.  Who is going to win this battle for funding?  Or will we all lose?

Here are the CKD related blogs updated since my last report on 12/12. 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.
• Kamal Shah's Blog recommends Dr. Sethi's new website on Pediatric Nephrology where an article by Kamal appears in which he describes his emotional reaction to watching a child undergo dialysis. (Very moving, Kamal.)
• Kaply, Inc. Tracy's doctor orders her a fistulagram and her friend, Sizzle, orders her a mani-pedi. (I know which one I would rather do.)
• Toastiest Toastie posts a moody black and white photo of a water tower against a cloudy sky, tries not to think about his upcoming birthday. 
• Hasten down the wire has harsh criticism for AOL's latest business plan.
• Becky Perry shares an excerpt from Joyce Meyer: A Life of Redemption and Destiny by Richard Young.
• On the Road to a Lupus Cure Congress passed the Omnibus Appropriations bill for Fiscal Year 2010 which contained important funding for lupus research and education; from now until March 15, 2010, 100 percent of the proceeds from each iTunes download of the song “LUCY” by  musicians James Scott Cook and Julian Lennon will be donated to lupus research.
• I Am. Are you? Donate Life Illinois launched a new website and invite you to take a look; photos from the Donate Life Float floragraph decorating event.
• The Ins and Outs of Dialysis Now that John is feeling a little better, he and Gayle are getting back into pot...that means making them.  They share photos of some of their beautiful creations.
• Lupus and Humor Carla uses Umcka to fight off colds; describes products she uses for pain management. (That suction cup massage device looks pretty weird, Carla!)
• Linda Gromko MD kidneycare Linda and Steve attend a party and find inspiration in this quote from Robert Ingersoll:  "The time to be happy is now.  The place to be happy is here. The way to be happy is to make others so." (Wise words to keep in mind, particularly at this time of year.)
• Precious Bodily Fluids demonstrates how he used an iPhone application to access PubMed and get important information about the impact of IV contrast on residual renal function to his colleagues in a flash. (Don't you just love technology!)
• Renal Fellow Network gives a differential diagnosis of disease processes which lead to hypokalemia, metabolic alkalosis, AND hypertension; welcomes another new contributor to the blog, nephrology fellow Albert Lam, of Brigham & Women's Hospital, and describes hemoperfusion which is a procedure employed in the treatment of specific intoxications and consists of running a patient's blood through a column containing adsorbent particles to which the toxin binds and are removed from the circulation; a post about atypical Hemolytic Uremic Syndrome(HUS) and a drug recently granted "orphan status" in an attempt to aid its testing in clinical trials for patients with atypical HUS.
• Uremic Frost A study shows that patients with stage 3 CKD and symptomatic high-grade carotid stenosis gain a large benefit in stroke risk reduction after endarterectomy; Australia has lifted its five-year ban on the transplantation of animal cells and organs into humans, bringing concerns from animal rights activists and transplant specialists that the procedure had not been proven safe and could result in the creation of deadly viruses.
• Renal tsar's blog reviews progress made in renal care and goals yet to reach in his Christmas message; answers a question from a potential kidney donor about getting paid leave from their job in order to donate.
• Pediatric Nephrology has an article on enteral feeding of children with CKD; a recollection by Kamal Shah about a child experiencing dialysis for the first time.
• Neophron's Senescence continues describing his vacation, had dinner with interesting people.
• pkdmom2five links to an article on "spiritual abuse" that sounds like what she went through at her last church. 
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to an article about the incredible 13-patient kidney transplant chain.
•  The Ballad of Billy The Kidney John links to an article describing the terrible lack of dialysis availability in the Australian outback.
• ....And Bells on Her Toes  also links to a story about the 13-way kidney swap/donation and calls it a Christmas miracle.
• The inner game of PKD Richie attends a Holiday party given and attended by members of the Long Island Chapter of the PKD Foundation and finds inspiration from all the people with PKD who were there enjoying themselves despite their condition.
• Michael W. Newman Michael gets his H1N1 flu shot; in his understaffed HD unit, when one of the patients experienced chest pain requiring attention from both the patient care technician and head nurse, the rest of the patients were unattended.
• DailyHemo - Home Dialysis Advocates New Video: Massive Transplant Effort Pairs 13 Kidneys To 13 Patients.
• Berns on Nephrology Dr. Jeffrey Berns raises issues about the treatment of anemia in CKD patients since publication of the TREAT study, which advises against use of darbepoietin alfa.
• Encompass Network Partners shares information about Peripheral Arterial Disease; and Chronic Critical Limb Ischemia.
• My Wife Has Lupus is starting to recover from a bout of depression.
• Mushroom's Blog has photos from his recent move from Washington to sunny Long Beach, California.

Dialysis & CKD Blog Report 12/12

By Miriam Lippel Blum

There are just a few days left to make your comments to CMS regarding the proposed payment rules.  The deadline is December 16 at the end of business hours. Make your voice heard!  It matters.

Here are the CKD related blogs updated since my last report on 12/9. 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.
• Kamal Shah's Blog Kamal disapproves of the way in which a new Indian state may be formed; goes to a new lab for his Vitamin D test and is pleased as they had online results available for him that evening. (What a concept!  To be able to get one's lab results at home when one wants to.  I wish a few dialysis and other lab companies would do likewise here in the US.)
• Kaply, Inc. Tracy reviews some things she has recently discovered about herself, she also has declared herself Surgery Queen of 2009. (We hope that 2010 will bring you much less surgery and lots more fun.)
• On the Road to a Lupus Cure The Lupus Foundation of America is holding its Annual Advocacy Day on March 15- 16.  It provides lupus advocates from across the nation the opportunity to participate in meetings with their U.S. Senators and Representatives to educate policy makers about lupus and discuss public policies that impact people with lupus.
• Really, I'm as Old as I Feel? Rob has a cancer scare because of a lump he finds in his breast (he is a 30- year old MAN), had to have a mammogram, and then see a surgeon about a possible biopsy. It turned out to be a non-cancerous lipoma and does not require removal.  He is relieved and thanks God. (A scary ordeal but with a good ending.)
• I Am. Are you? has links to an excellent interview with Chicago Bears cornerback Charles Tillman who has stepped up as a huge advocate for organ donation; announces a gathering to be held this Saturday to decorate two floragraphs that will be placed on this year’s Donate Life float.
• The Ins and Outs of Dialysis John and Gayle get a house call from their dialysis nurse, Yvonne, share photos of her and their unit's social workers.
• Lupus and Humor Carla discovers that her chronic shoulder pain was caused by bad guitar playing habits, some acupuncture helps, now taking low dose naltrexone which seems to be helping her lupus, finds her thinking clearer now that she is off pain meds.
• Dialyse This meets a boy she likes, gets an interview request from a reporter regarding dialysis.
• Linda Gromko MD kidneycare Linda recommends listening to Dr. Peter Laird's interview on Renal Support Network's  Kidney Talk and shares what she learned.
• Renal Fellow Network posts the poll results from last week's question regarding anemia management in a dialysis patient and relevant research to consider; an article in this month's JASN describes a cohort of 10 bodybuilders with chronic kidney disease, and makes a compelling case that anabolic steroid use is an under-recognized cause of secondary Focal Segmental Glomerularsclerosis (FSGS).
• Uremic Frost A new study shows that more than 1 in 5 dialysis patients who had a percutaneous coronary intervention (PCI) received a contraindicated antithrombotic, resulting in a significant increase in the risk of a major in-hospital bleeding event;  the New York Times posted online an article with an accompanying video about the link between anabolic steroid use and progressive renal disease; the FDA has approved Tris Pharma’s clonidine extended-release tablets and suspension for the treatment of hypertension.
• UKidney A study suggests that patients returning to dialysis after a transplant fails experience improved survival if the kidney is removed; a study describes an association between CKD5 patients with CMV-positivity and those with EPO resistance.
• Pediatric Nephrology A new blog to our list. Dr Sidharth Kumar Sethi is a pediatric nephrologist in India, who has started a Blog for education in Pediatric Nephrology. He will post every two weeks an edition of news, journals, patient experiences and everything related to the fascinating world of Pediatric renal diseases.
• Renal tsar's blog The NHS's Secretary of State for Health launches an improvement program that puts an emphasis on home dialysis.
• Neophron's Senescence got a challenging ER dialysis patient right before he went on vacation; describes Day 3 of his vacation.
• pkdmom2five is feeling much better and ascribes removal of stressors to her new health and energy. (Good advice for us all -- decrease stress.)
• Dialysis and Me Barry is done with Christmas shopping and describes adventures in tree trimming; two cute videos of his boxer, Jojo.
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to his paper on kidney disease in bodybuilders that was in the NYT sports section (Excellent video there on one of the weight lifters); 20 people who make healthcare better.
• Rob and Danielle's Kidney Blog A customer writes an article about Rob's kidney situation and says he will pray for a donor, later a reader of the article offers to be tested to be a donor for Rob.
• ....And Bells on Her Toes ponders what do you get someone who gives you their Kidney?
• The inner game of PKD Richie asks PKD patients "How Do You Perceive Your Future?"
• Michael W. Newman Michael posts an article about troubles with Medicare.
• Unfiltered Hope Darren is home from the hospital and feeling good, his creatinine is going down, gratitude for faithful family and friends is expressed.
• My New (transplanted) Kidney Journey Al's clinic visit goes well, his labs are okay, hopes to go back to work next month, has insurance company trouble. (Who doesn't?)
• Kidney Diet Tips posts information and resources on phosphorus and CKD.
• El Blog del programa “R - Hacelo por mí” (en Español) The Blog of "R - Hacelo for me" (Google translated from Spanish) Betoreyna has decided to return to writing this blog after a long hiatus; reports that  Fresenius Medical Care Argentina (whose motto ironically is "Innovating for a Better Life") is preparing a new "protocol", in which the dialysis machine is not disinfected between patients, with all the dangers this can bring. (Being a dialyzor in Argentina is scary business!)
• I'm-u-no-logic reflects on the nature of friendship and what Facebook has done to destroy authentic connections between people; wishes procrastination was a human quality that would evolve out of the species already.

Dialysis & CKD Blog Report 12/9

By Miriam Lippel Blum

There are 7 days left to make your comments to CMS regarding the proposed payment rules.  The deadline is December 16 at the end of business hours. Make your voice heard!  It matters.

Here are the CKD related blogs updated since my last report on 12/6. 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.
• Kamal Shah's Blog Kamal describes political unrest that is occurring in his part of India.
• Kaply, Inc. Tracy may need another angioplasty for her fistula before she goes on her trip, posts a funny video of a kitten singing about cake.
• Toastiest shares a photo of his cat sleeping.
• The Life of a 20-Something With Lupus has a photo of her pill boxes filled with her medications for the month.
• Transplant, Tantrums, & Tiaras Holly didn't feel well, thought it was from a change in immunosupressant dosage, her friend Emily Thackery appears in a short documentary called I'd Give You One about organ donation, ; the founder of Bebo, Michael Birch constructed a website, Help Jess Breath, to bring attention to organ donation and to help save Holly's friend, Jess, who needs a lung transplant.
• On the Road to a Lupus Cure The Lupus Foundation of America has videos available for viewing about the latest lupus research; a post on lupus-related headaches and ways in which to lessen their frequency and severity.
• Really, I'm as Old as I Feel? Rob has a photo of daughter, Abby, baking cookies in the kitchen.
• I Am. Are you? Information about a key part of the Rose Parade float - the Family Circle Garden.  This Rose Dedication Program offers families touched by organ and tissue donation the opportunity to honor their loved ones by dedicating a rose that is tagged with a personal message and placed in the Family Circle Garden;  Donate Life Illinois announces that there are now 5 million Illinois residents registered as organ/tissue donors!
• The Ins and Outs of Dialysis Gayle makes Christmas Kransekake for special people (Go look at her blog for a photo and description if you don't know what that is), John had one laser surgery done and hopes for vision improvement, next week the other eye, they have a busy week of medical appointments.
• Chronic Chick Talk finds moving very stressful and exhausting,  recommends a moving company in Los Angeles that she likes; shares a snowy photograph and prepares for a freezing day.
• Bud's Ramblings Bud hopes the rain and sleet clears before a family gathering and so he can go out in his power chair.
• Linda Gromko MD kidneycare Linda describes how home dialysis gives some flexibility to life and they take advantage of their free time whenever they can; Linda discusses discuss the common signs and symptoms of an acute heart attack.(Important for people with CKD and caregivers to know given the pervasiveness of heart problems in CKD5)
• Precious Bodily Fluids has a post on cast nephropathy and plasmapharesis;  describes two cases of super high glucose and calcium he saw this weekend; his list of the top nephrology stories in the last decade; links to information about potassium from the Linus Pauling Institute; a new study indicates low Vitamin D levels may influence the development of renal disease.
• Renal Fellow Network Some CPT coding advice regarding billing that renal fellows should know; hysterical photos of Billy the Kidney demonstrating important principles of kidney disease;   a few interesting tidbits from a Renal Grand Rounds presentation about a case of tenofovir-induced renal failure (a drug commonly used in the HIV population).
• Uremic Frost 53 men worldwide have developed breast cancer while taking finasteride (Proscar), a medication commonly used for benign prostatic hypertrophy (BPH); the results of a D-dimer test for suspected pulmonary embolism may be less accurate in the setting of a decrease in Glomerular Filtration Rate (GFR); a federal advisory panel recommended the Food and Drug Administration approve a new anti-rejection drug from Novartis, everolimus; surgeons at the University of Maryland School of Medicine in Baltimore transplanted five kidneys from which they had removed small masses, three of which were cancerous. Four of the five patients have survived between nine months and 41 months so far without any evidence of recurring tumors. The fifth transplant patient died about a year after the operation because of a fall in an accident. (Personally, not my choice for a transplant organ.); a study found that men who drank the most coffee had a 60 percent lower risk of aggressive prostate cancer than men who did not drink any coffee.(So, Guys, go drink your java!  It's good for you.)
• UKidney There’s now an iPhone app that will walk you through all the steps needed to sign up to be an organ donor; surgeons who successfully performed kidney transplants after removing small cancerous and benign masses from the donated organs, have published their results in the December issue of the urology journal BJUI.
• Renal tsar's blog has a drug safety warning about Ciclosporin for transplant patients because switching between different types or formulations without close monitoring may lead to clinically important changes in blood levels even if the same dose is taken; information on MRSA and Clostridium difficile rates is available from the UK Health Protection Agency.
• pkdmom2five posts a note regarding people who lurk on her website.
• Kidney Notes - Exploring the Intersection of Medicine and Technology Dragon Naturally Speaking Dictation available for free for the iPhone; more medical applications available for the iPhone.
• ....And Bells on Her Toes shares her ideas for raising money for the food bank.
• The inner game of PKD challenges people with PKD to write him exactly and specifically what the biggest obstacle is in their PKD Odyssey that keeps them from having the the lifestyle they desire.
• 3 1/2 Hours of Free Cable Jason reflects on his own mortality after the death of his cousin.
• Unfiltered Hope Darren is doing better, has a kidney biopsy; biopsy shows no signs of rejection but Darren must learn how to drink more -- after five years of fluid restrictions that is not as easy as it sounds.
• DailyHemo - Home Dialysis Advocates New Videos: Promising Discovery in DRA in Long-Term Dialysis; Twitter: Why it's Better Than Traditional Methods of Communication; Tunisian Researcher Invents New Technique of Dialysis.
• Kidney Community Emergency Response With the New Year approaching, KCER wants to encourage the renal community to make preparing for an emergency a resolution and gives steps to take towards that goal.
• Libre Clothing links to a story about Natalie Cole when she was on dialysis; links to videos of the Libre elves having holiday fun.
• Renal BizBlog Fresenius Medical Care announced a transition to a new management board structure, which includes a contract extension until 2012 for chairman and chief executive officer Dr. Ben J. Lipps.
• Nitey Nite- a nocturnal dialysis blog is still on nocturnal dialysis, drives 1.5 miles to get there, is displeased with her nephrologist who is generally unhelpful, toys with the idea of going to Asia to procure a transplant.
  

Dialysis & CKD Blog Report 12/6

By Miriam Lippel Blum

There are 11 days left to make your comments to CMS regarding the proposed payment rules.  Make your voice heard!  It matters.

Here are the CKD related blogs updated since my last report on 12/3. 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.
• Kamal Shah's Blog Kamal reminds healthy people to not take their bodies for granted.
• Kaply, Inc. Tracy shares moments from her super productive day.
• Toastiest posts a Michael Damien music video; reviews the movie Dan in Real Life.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease 10 days of Cipro brings down Jeff's BK virus, neuropathy gives him foot problems, gives kudos to a young woman dealing with a devastating dermatologic illness.
• Transplant, Tantrums, & Tiaras Holly describes a star-studded party she attended at Number 10 Downing Street to which she was personally invited by Sarah Brown, the Prime Minister's wife; updates on her Live Life Then Give Life campaign.
• On the Road to a Lupus Cure  reminds how important donations are to the Lupus Foundation of America and different ways to contribute.
• Lupus and Humor Carla reviews Model Patient: My Life as an Incurable Wise-Ass by Karen Duffy, finds it a funny, colorful, well-written, page-turning memoir, but strongly disagrees with Duffy's attitudes towards alternative medicine and compliance without question.
• Bud's Ramblings Bud describes the first snow of the season, too cold to go out in his power chair.
• Linda Gromko MD kidneycare Linda gives caregivers ten tips that may help make the holidays more pleasant and less stressful.
• Precious Bodily Fluids Joel Topf, MD shares his recent presentation which looks at five different issues with hyponatremia; saw a patient with the highest urine urea he had ever seen.
• Renal Fellow Network shares the results of last week's poll on the use of steroids in treating Acute Interstitial Nephritis; discusses a promising new class of oral hypoglycemic agents for type 2 diabetes; a study describes an association between CKD5 patients with CMV-positivity and those with EPO resistance.
• UKidney Blocking the effects of high levels of urea might benefit patients with CKD5; a new model can help physicians determine if a kidney disease patient on dialysis is likely to die within the next few months.
• pkdmom2five shares holiday photos.
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to a description of a Grand Rounds on participatory medicine, given by E-Patient Dave and his doctor, Danny; Dr. Rob's 6 Rules for Doctors; how Google now personalizes everyone’s search results.
•  The Ballad of Billy The Kidney John reports that the National Health and Medical Research Council announced that the ban in Australia on xenotransplantation is about to be lifted; highlights heart transplant recipient, Jerry Richardson, who is owner and founder of the Carolina Panthers.
• ....And Bells on Her Toes is proud of her bright daughter, describes a recent parent-teacher conference; Alex undergoes his last pre-transplant tests and they hope for a kidney in January.
• Jenna Franks describes her involvement with the Renal Support Network's 2010 Renal Teen Prom and tells how you can help.
• Unfiltered Hope Darren's condition improves with steroids but the joint inflammation has gotten worse in his knees and ankles.
• DailyHemo - Home Dialysis Advocates New Video:  Delivering the Prescription for Hemodialysis; David Rosenbloom, Kidney Patient, Lectures to USC Med Students; Malaysia Kicked Off Its First Free Dialysis Clinic; Steven Olsen's Life Changed With Nocturnal Dialysis; Sometimes Kidney Disease Can Shatter Your American Dream; Home Dialysis Units Increase Freedom For Kidney Patients;Gambro Prismaflex Sure Looks Home Friendly.
• Free range fish sticks After 6 months of silence, this caregiver blogger reports that his wife Sheila has been very ill with CKD5 and often in the hospital, he turns to his faith and religious music for comfort.

Dialysis & CKD Blog Report 12/3

By Miriam Lippel Blum

There are 14 days left to make your comments to CMS regarding the proposed payment rules.  Make your voice heard!  It matters.

Here are the CKD related blogs updated since my last report on 11/30. 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  Bill reports that DSEN's Peter Laird, MD does an excellent interview for Kidney Talk where he describes his experiences being a physician with CKD5, Trading Places - What Happens When a Doctor Becomes the Patient? ;  the blog report.
• Kamal Shah's Blog Kamal is experiencing intense pain from his arterial sites during dialysis, is going to use sharp needles and establish a new buttonhole site; his new buttonhole site works well, he has no pain and finally gets a good night's sleep. 
• Kaply, Inc. Tracy loves Christmas, is looking for guest bloggers to write while she is away; a list of things that make her angry; she goes shopping for jeans expecting not to find any she looked good in but at Lane Bryant found two great pairs and a raincoat to boot.  (Enjoy!)
• Toastiest Toastie feels wiped out by dialysis like he did pre-dialysis and thinks it "sucks." (We agree with you, but you should check in with your doctor to see if he can help. Maybe there is some imbalance or anemia that can be corrected.); makes fun of a story headline; a photo of him at 1:36 AM on nocturnal dialysis.
  
• Birdman Sparrow spends  a few days in the hospital after being found unconscious outside his home, after release he sees an ophthalmologist about an eye problem and the doctor examines the wrong eye.
  
• Transplant, Tantrums, & Tiaras Holly mourns the death of a young friend who was waiting for a lung transplant that never came.
• On the Road to a Lupus Cure The Lupus Foundation of America (LFA), Greater Washington Chapter celebrates its 35th anniversary with a luncheon on Sat., December 5; the LFA's next "Medication"  webchat is Wednesday afternoon, December 9, at 3 p.m. Eastern Time. Dr. Graciela S. Alarcón will serve as the guest expert.
• Really, I'm as Old as I Feel? has photos from a joyful Thanksgiving.
• I Am. Are you? Donate Life Illinois started a two month advertising campaign with ads on trains and buses around Chicago. Snap a photo if you see one around town and post it to their Facebook page; heart and kidney transplant recipient Bill Coon shares thoughts about Thanksgiving one month after his transplant.
• The Ins and Outs of Dialysis Gayle took a CPR class, remembers an encounter with Santa Claus from  Christmas in 2002 when John had a stroke and his kidneys failed.
• Dialyse This Cassie coughed so hard she damaged her ribs and was in great pain.
• Linda Gromko MD kidneycare Linda and Steve are willing to do a donor exchange to get Steve a kidney.  He needs a Blood Type A or O kidney, and Linda has a Blood Type B kidney to offer. Contact information is in the post; Linda's two books Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor'and Complications: A Doctor's Love Story are now available for Kindle at Amazon.com.(Definitely worth reading.)
• Renal Fellow Network has a post on Restless Leg Syndrome in dialysis patients.
• Uremic Frost Davita and Fresenius are accused of Medicare fraud; new research establishes the link between stress and hypertension.
• UKidney The Kidney Foundation of Canada conferred the 2009 Founder's Award to all Québec nurses who have worked in dialysis and/or transplantation for 25 years or more and have devoted their careers to the care of nephrology patients. A Gala was held to honor and celebrate them. (Congratulations to all those great nurses!); a Japanese doctor who helped develop a new transplant method has taught the technique at a hospital in China that has come under international criticism for its use of organs from executed prisoners.
• Renal tsar's blog writes about the benefits of peer-review for renal unit personnel.
•  Dialysis and Me Barry is having a bone scan to diagnose an aberrant liver enzyme, his phosphorus and thyroid hormone levels are off, too. (We hope the tests will help you resolve it all soon.); will be participating in his first Warhammer tournament.
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to an article  from the NEJM entitled "The Emotional Epidemiology of H1N1 Influenza Vaccination."
• Lemonade and Kidneys Ruth loved the bloggerfest she attended but had some unexpected expenses from the day.
• The inner game of PKD Richie writes about how he deals with PKD frustration; "Mind Games" for PKD patients.
• 3 1/2 Hours of Free Cable Jason shares memories of his 25-year old cousin who was just killed in a car crash. (Our hearts go out to you and your family.)
• Unfiltered Hope Darren develops severe pain in his hands/arms/shoulders/neck and spiked a temperature, he's in the hospital to determine the cause. (We hope all resolves well and quickly,)
  
• DailyHemo - Home Dialysis Advocates has a new look to his blog; New Video: Bell Tolling for the Swine Flu.
  
• NephrOnline Blogs Mark E. Neumann reports that the National Renal Administrators Association(NRAA), concerned with many aspects of the bundle, has suggested a second public review and comment period before the bundled payment system goes into effect in 2011. (Great idea.) 
• Renal BizBlog shares quotes from AAKP President, Roberta Wager, and NxStage CEO Jeff Burbank, about home training and the bundle, links to their full interviews.
• Kevin’s Blog Kevin describes the hermeneutics class he is taking through his church.

Dialysis & CKD Blog Report 11/30

By Miriam Lippel Blum

There are 17 days left to make your comments to CMS regarding the proposed payment rules.  Make your voice heard!  It matters.

Here are the CKD related blogs updated since my last report on 11/27. 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.
• Kamal Shah's Blog Kamal gives his opinion on overly complex computer coding.
• Kaply, Inc. Tracy has a busy day with her friend Sizzle.
  
• Toastiest has a photo of his dog, Herman.
  
• The Life of a 20-Something With Lupus Flo and her family mourn the death a friend. (Our condolences for your loss.)
  
• Transplant, Tantrums, & Tiaras Holly won the National Shout Award for Campaigning and reports on her exciting evening, has photos. (Congratulations. Holly, you deserve it !)
• On the Road to a Lupus Cure Julian Lennon, son of the legendary John Lennon, and James Scott Cook announced today that they will donate a portion of the proceeds from their song, “LUCY,” to fund lupus research.
• Chronic Chick Talk has a photo of a landscape she likes.
  
• Bud's Ramblings Bud describes his Thanksgiving meal, had to stop dialysis 30 minutes early because of cramping.
  
• Linda Gromko MD kidneycare Steve has a small heart attack during Thanksgiving night dialysis and required balloon angioplasty at the hospital. (We're glad it was minor and that he'll be back to his cardiac rehab this week.) Linda describes the wonderful dialysis nurse,  A'dree-Rose Hollenger,  who took care of Steve in the hospital; shares a supportive note from another caregiver who also  appreciated A'dree-Rose.
• Renal Fellow Network has a brief review of thiazide diuretics.
• UKidney The BBC reports that more organs from higher risk donors are being used for transplants in the U.K. because of a donor shortage; Health Canada is informing health care professionals and Canadians of recent changes to heparin manufacturing standards in the United States that will result in a decrease in the potency of certain heparin products by about 10 per cent; the British government is exploring the idea of having organ donor registration available at polling stations during elections.
• ....And Bells on Her Toes Another new blog to the list.  Kelly started her blog in May 2009 when her  husband, Alex, was first diagnosed with IgA Nephropathy (Berger's Disease).  He is now at CKD5 and just had the last tests prior to transplant expected to take place early in the new year.  His Dad will be the donor. In her latest posts, Kelly describes Alex's horrendous experience during the cardiac testing when his blood pressure jumped to 240/170; an incident where they see a young child in a stroller left alone outside a convenience store; and comparison photos of her daughter Caity on Santa's lap this year versus last year.
• 3 1/2 Hours of Free Cable Jason is thankful for all the people who are blessings in his life and expresses appreciation.
• Michael W. Newman Michael overdoes the fluid on Thanksgiving and dreads his next dialysis session; he is glad to see that his clinic has finally increased staffing; shares a quote from CMS' Conditions for Coverage regarding the requirement that an RN must be present in the facility when patients are being treated; a CMS press release from 2008 regarding the Conditions for Coverage.
• Team Teddy Bear Bob writes an open and very poignant letter to all that his wife, Jeanne's transplanted kidney is now failing after 11 years.  She is on the national transplant list but the wait will likely be seven years as she is Blood Type O.  Bob is willing to participate in a donor swap on her behalf.  He has Blood Type AB.  He gives the contact information for the transplant center they are working with if anyone is interested in being evaluated as a donor or recipient. (We wish you both well and hope that a donor will be found soon.)

Dialysis & CKD Blog Report 11/27

By Miriam Lippel Blum

There are 20 days left to make your comments to CMS regarding the proposed payment rules.  Make your voice heard!  It matters.

Here are the CKD related blogs updated since my last report on 11/24. 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 Northwest Kidney Center's CEO Joyce Jackson was presented with the 2009 Warren Featherstone Reid Award for Excellence in Healthcare by the State of Washington.
• Kamal Shah's Blog Kamal reflects on completing his first year working at Grene; he finds it frustrating when people sign e-mails with just a first name, especially when they have a common name and he doesn't know which of the several people he knows by that name sent it. (I find that frustrating, too, but sometimes you can tell from the e-mail address.)
• Kaply, Inc. Tracy is busy healing from surgeries and getting ready for her trip to Maine; describes making Chex-mix (I love Chex-mix, yum!); posts a comic about Thanksgiving.
• Toastiest Toastie is having a contest to identify the name of a piece of music, $5 gift card for the winner; has a Thanksgiving weekend plumbing disaster. (Stuff like that always happens on holidays!)
• The Life of a 20-Something With Lupus Flo describes frustration with the long waiting line at the eye doctor.
• Jack's Kidney Adventure Jack agrees with a research article he read on NephrOnline regarding the quality of life of transplant recipients over time.
• Transplant, Tantrums, & Tiaras Holly is excited about going to London for the awards show where she will be acknowledged.
• I Am. Are you? Anne Gulatta, whose husband, Jay, was an organ donor describes what "Thanks" means to her on Thanksgiving.
• The Ins and Outs of Dialysis Gayle is grateful to have John in her life and shares a happy photo of them with their grandchildren.
• Linda Gromko MD kidneycare Linda is proud of Steve who is now doing serious aerobic and strength training workouts at the gym after having had a heart attack during his kidney transplant surgery and subsequently losing the kidney (What a heartache that must have been. We wish you success with your workouts, Steve, and that the next transplant will be a success.); shares the letter she wrote to CMS about the Medicare Bundling Plan and reminds us of the December 16 deadline for getting comments in.
• Precious Bodily Fluids shares some questions to get people to initiate conversations about  about their end of life wishes.
• Renal Fellow Network comments on research that indicated allograft nephrectomy to be independently associated with improved survival in people when they return to dialysis; was thankful not to be on call so he could enjoy Thanksgiving with family and posts a new poll about treatment for interstitial nephritis.
  
• Uremic Frost Another study shows the danger of salt intake, this one showed that higher salt intake was strongly associated with a higher incidence of stroke and cardiovascular disease; reports that using a calculation of the fractional excretion of uric acid (FEUA) may be more useful in the diagnosis of Acute Kidney Injury caused by decreased kidney perfusion.
• Renal tsar's blog responds to a query about establishing new kidney units.
• Rob and Danielle's Kidney Blog Danielle and Rob describe a pleasant Thanksgiving Day and share photos.
• The inner game of PKD Richie describes emotional stages he went  through as he grappled with his PKD diagnosis.
• Nathan's PKD Nathan recovered from his 9-day illness, wonders if infant immunizations have any impact on immunosuppressed people - they are expecting a baby soon. (A good question to ask your nephrologist. Perhaps, live virus mist-type vaccines might be a problem.)
• Jenna Franks Jenna joins her family's Thanksgiving via Skype. (The next best thing to being there.)
• Biologically Safe Water Filters AAMI is adopting tighter standards on bacteria limits. Ultrafilters from Nephros are safe and easy to install on RO units at home and in acute units and can protect patients from bacteria exposure.
• Kidney Diet Tips Kidney-friendlys suggestions for your Thanksgiving meal.

Dialysis & CKD Blog Report 11/24

By Miriam Lippel Blum

There are 23 days left to make your comments to CMS regarding the proposed payment rules.  Make your voice heard!  It matters.

Here are the CKD related blogs updated since my last report on 11/21. 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 that most of the comments sent so far to CMS regarding the bundling describe problems with it but give no concrete alternative suggestions. He also thinks that CMS should wait on some decisions until the national health reform bill is passed.
• Kamal Shah's Blog Kamal explains the role of Vitamin D in the production of calcium and bone health, his doctor has put him on Calcitriol to supplement, hopes this will help with bone pain; Kamal conducts international research to find out if it is possible for him to have a successful kidney transplant despite his Atypical Hemolytic Uremic Syndrome (aHUS).
• Toastiest Toastie writes a strong (but civil) letter of complaint to his dialysis unit regarding their behavior during nocturnal dialysis. (You tell 'em, Toastie!)
• Hasten down the wire Michael thinks the Washington Post is becoming irrelevant; comments on a media mogul's verbal swipes at public radio; suggests that Twitter may have "jumped the shark."
• The Life of a 20-Something With Lupus Flo gets her H1N1 shot and her arm is sore for a couple of days.
• Transplant, Tantrums, & Tiaras Holly shares the press release she wrote after her abseiling down the lighthouse  fundraising event for organ donor awareness.
• On the Road to a Lupus Cure highlights a new blog about lupus issues written by a woman in Oregon.
•  I Am. Are you? has links to excellent videos from a week-long TV series that profiled various personal stories related to organ donation.
• The Ins and Outs of Dialysis John struggles with balance problems, they hope physical therapy and exercise will help; Gayle shares her philosophy on caregiving and how she copes.
• Lupus and Humor Carla recommends two diet books, Eat to Live by Joel Fuhrman, MD, and The Lupus Recovery Diet by Jill Harrington.
• Linda Gromko MD kidneycare Linda notes how difficult it is to get people to do what is necessary for their health; finds the hypervigilance she must maintain as a caregiver exhausting.
• Renal Fellow Network posts two video clips, one a weird animation about Knuckles the Kidney, the other a basic explanation of diuretic action in the kidney; describes the The Nephrology Oral History Project and what early nephrologists and patients had to go through for dialysis access (Reading this made me very grateful for my AV fistula!); an article examines the role of polycystin proteins in causing high blood pressure in people with PKD.
• Uremic Frost A small study in Italy found that a low protein diet did not decrease the risk of death or dialysis therapy initiation compared with a moderate protein diet.
• UKidney A study concludes that patients starting dialysis have an increased risk of death that is not specifically caused by excess cardiovascular mortality.
• Renal tsar's blog discusses some issues to consider in the establishment of new kidney units; development of new specifications for peritoneal dialysis in the UK  should increase access to that modality.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) Alejandro describes the insane procedure required in order to obtain a disability certificate in Buenos Aires. (And you thought the DMV was bad?)
• pkdmom2five had a happy and busy weekend filled with church activities.
• Kidney Notes - Exploring the Intersection of Medicine and Technology posts a satirical tee shirt design by Warren Ellis about universal health care.
• Rob and Danielle's Kidney Blog Rob describes a woodworking project, he has trouble sleeping on dialysis and needs to use Ambien to sleep;  Danielle gets a new job, rents My Sister's Keeper because it's about renal failure, dialysis and a potential kidney donation.
• The Ballad of Billy The Kidney John is swamped with end of the term paperwork and hopes to return to posting soon.
• The inner game of PKD Richie explores issues and problems in communication when one has PKD.
• Michael W. Newman Michael is asked by an online news organization to write articles pertaining to credit/debt issues and will then become syndicated, wishes a news agency would do the same for dialysis issues.
• Unfiltered Hope Darren is home and the new kidney continues to improve, they celebrate this new lease on life; Darren's creatinine has dropped down to 3.09 from 8.5, they and the doctors are thrilled,  Sara buys an industrial size container of hand sanitizer to keep the flu away from her now immunocompromised husband.
• Libre Clothing  Create a name for Libre’s new pull-over, and share your story. The name can be inspired by anything; a gifted doctor, inspiring nurse, favorite place, or even yourself. Every name has a story. The winning story writer will receive a free Libre pull-over and the pull-over style will be named after the inspiration from his or her story! Deadline: December 15, 2009.
• Renal BizBlog reports that in October, the first national certification for medical interpreters was launched to help patients in the United States with limited English proficiency receive better healthcare.
• Living with PKD Heather writes about the lessons she learned from running her half-marathon; shares how she lives with PKD.
• My New (transplanted) Kidney Journey Al's creatinine has crept up a little and he's nervous, thinks he should try a kidney-friendly diet to ease stress on his new kidney.

Dialysis & CKD Blog Report 11/21

By Miriam Lippel Blum

There are 26 days left to make your comments to CMS regarding the proposed payment rules.  Make your voice heard!  It matters.

Here are the CKD related blogs updated since my last report on 11/18. 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 that the Senate bill seems to address dialysis coverage in a couple of citations.  It doesn't include immunosuppresant coverage, and reverses the 1% decrease of payment mandated by MIPPA.  The language about Medicare Advantage programs is, basically, unintelligible, and he's not sure what they are saying. (I looked at it, too, and promptly gave up.); Peter points out that CMS has not addressed in any of their comments or discussions the hidden administrative costs of the bundle for physician and dialysis providers Medicare compliance. (Excellent points, Peter! Someone has to pay those costs and the way it is written...or not written now, puts that burden on the providers.)
• Kamal Shah's Blog Kamal figures out how to add multiple items to svn in one shot. (This is software lingo I don't understand, but Kamal does, and his colleagues think he's brilliant so it must be good.)
• Kaply, Inc. Tracy has an untraditional Thanksgiving by going out for Indian food; has problems with the feed on her website, and the doctor gives her more medications to put up her nose, post-sinus surgery.
• Toastiest Toastie critiques the way MSNBC.com and the like present the costs of the healthcare reform bills; photos of Herman the dog playing with the TV remote and Aremid, the cat, sleeping.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease Jeff's BK Virus increases and he is put on antibiotics again, otherwise he is okay, provides a link to another blog that is following the story of a young woman struggling with PKD and a brain aneurysm.
• On the Road to a Lupus Cure The Lupus Foundation of America (LFA) attended the American College of Rheumatology's conference and has released videos about the latest lupus research they learned about; has  a video with a new low-impact exercise program, designed specifically for people with lupus, available from their store.
• Really, I'm as Old as I Feel? photo of 2-year old Abby having a bad hair day.
• I Am. Are you? announces the winners of the Donate Life Illinois 2009 Campus Challenge; is giving away 20 autographed copies of Carrie Underwood’s new CD, Play On. 
• Bud's Ramblings Bud's Thanksgiving plans, had a lot of cramping on dialysis.
• Precious Bodily Fluids posts on treatment recommendations for membranous nephropathy; slides from the journal club's discussion of an NEJM article on CRT dosing; comments on headlines from current news that shows that drinking alcohol can be good for you, and taking vitamins can be bad.
• Renal Fellow Network last week's poll results showed that the majority of individuals were wary of using physician "Pay For Performance" as a strategy towards increasing AV fistula placement rates; a case study on  analgesic nephropathy.
• Uremic Frost Simon samples the new Renvela powder and is not convinced it is going to as big a hit as Genzyme hopes, also reports on the failure and discontinuation of development of Genzyme's new proposed APB (advanced phosphate binder).
• UKidney The results of a new study into side effects of gadolinium MRI contrast agents indicates that patients undergoing dialysis are at 77 fold higher risk of contracting nephrogenic systemic fibrosis (NSF), and kidney transplant patients face a 69 fold higher risk of developing the rare and potentially life-threatening condition, which is associated with a hardening and thickening of the skin and other tissue throughout the body; comments on research interventions to improve fluid restriction adherence in chronic HD treatment.
• Renal tsar's blog opines on whether improving quality of renal care saves money.
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to a new research study on how physicians use the Internet; link to an article on Google's Health Beta and Microsoft's My Health Info; links to the case report on analgesic nephropathy found on Renal Fellow Network; a video lecture by Merlin Mann entitled "Something Something Social Media: The Overdue Minority Report"; an article on how doctors' ties can spread the flu and an antimicrobial tie with a graphic design based on the H1N1 virus.
• Lemonade and Kidneys Ruth is feeling cranky having had an allergy attack that deprived her of a good night's sleep.
• Rob and Danielle's Kidney Blog This is a new blog to our list written by both a husband and wife.  He has PKD, is on dialysis and awaiting a transplant. They hope to share experiences and information about Polycystic Kidney Disease (PKD) and dialysis that will help others.
• The inner game of PKD Richie explores how people with PKD explore emotions.
• 3 1/2 Hours of Free Cable Jason tells the story of how he and his kidney donor, Jeremy, met, emphasizes Jeremy's character and the fact that a donor doesn't have to be a family member.
• Unfiltered Hope Darren's new kidney is definitely waking up; Darren celebrates his 41st birthday with a new kidney and should be out of the hospital in the late afternoon.. Includes a photo of all the pills he must take.
• Berns on Nephrology Jeffrey S. Berns, MD, reports from the floor of American Society of Nephrology Renal Week 2009 on 3 major trials, including an "outstandingly done study" on differing hemoglobin levels in patients with CKD and type 2 diabetes; discusses the effect of bundling all ESRD services into one prospective payment system as well as The Lancet retraction of the COOPERATE study.
• Kidney Community Emergency Response This month's issue of "Welcome to Disasterville" focuses on winter weather. Be sure to check it out at http://www.kcercoalition.com/newsletter.htm
• NephrOnline Blogs Mark E. Neumann summarizes the reports from CMS  proposing  recommendations on how the ESRD Networks can improve.
• My New (transplanted) Kidney Journey Al's creatinine has gone up some and he is worried, has a doctor appointment soon, is thinking about initiating a dialysis diet to take the stress off his new kidney.

Dialysis & CKD Blog Report 11/18

By Miriam Lippel Blum

There are 29 days left to make your comments to CMS regarding the proposed payment rules.  Make your voice heard!  It matters.

Here are the CKD related blogs updated since my last report on 11/15. 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 points out the foolishness of the House's Health Reform Act trying to pay for immunosuppression by insisting that oral drugs be included in the ESRD bundle.
• Kamal Shah's Blog Kamal's vitamin D level is very, very low and he will get a supplement now but worries what other damage this has caused him.
• Kaply, Inc. Tracy announces her new, improved blogsite at  www.kaplyinc.com is ready and if you wish to continue reading her then change your bookmark.
• Toastiest Toastie feels embattled by unfulfilling work, frustrating dialysis, and no life goals that interest him, he posts a picture of his cat to cheer himself up; figures out an app on his beloved  iphone that allows him to live-blog while on dialysis; notes the deaths of two minor celebrities.
• Hasten down the wire Michael would like to expose and penalize politicians who take money from the healthcare lobby and do not vote in the interest of the American people (As the saying goes "Whose bread you eat, their song you'll sing."); reveals the cynicism and irony in the fact that Big Pharma is raising drug prices to offset any savings expected by the healthcare bill. (I agree with you, Michael, and here's a prime example. Yesterday, my AARP Medicare Part D plan run by United Healthcare sent me a notice that on Jan. 1, 2010 the cost of a generic medication, midodrine, that I must take to raise my dangerously low blood pressure and for which there is no alternative has gone from a $7.00 copay to $42.00.  A six-fold increase!)
• The Life of a 20-Something With Lupus Flo took a study break and went to a party; describes the weird behavior of an addict on the train; shares photos of her dialysis machine and all the boxes and supplies in her room, hopes to get it better organized sometime with some help from her Dad.
• On the Road to a Lupus Cure The Lupus Foundation of America's webchat is next Monday afternoon, November 23, at 3 p.m. Eastern Time. The guest expert is Dr. Sam Lim on the topic of "Medication Adherence."
• I Am. Are you? posts an excellent comic about organ donation; kidney transplant recipient, Michelle, shares thoughts about sharing in the latest chapter from the Illinois Donor Diaries.
• The Ins and Outs of Dialysis John's fistula gets an angioplasty to widen vessel narrowing; he likes his internist and his other doctors who act as a supportive team, but so much time is taken up by appointments and dialysis,  a photo of his internist having fun with several John masks.
• Linda Gromko MD kidneycare Linda profiles an amazing 79-year old dialysis caregiver, Gloria Lomax, who dialyzes her husband at home; Steve has some more cardiac rehab to do before he can have another transplant but some people have been tested as possible donors, no matches yet because of antibody issues, pain is caused by people offering to donate and then not following through. (Don't offer unless you mean it.)
• Precious Bodily Fluids links to a commentary at KevinMD on the results of the ARBITER 6-HALTS study showing that treatment with niacin is a more effective way of slowing atherosclerosis in high-risk patients on long-term statin therapy than seeking additional LDL cholesterol reductions by adding ezetimibe (Zetia); describes a case of secondary hyperparathyroidism treated successfully with Vitamin D.
• Renal Fellow Network Posts about diagnosing reset osmostat; Leptospirosis-induced renal failure; kappa versus lamda light chains in paraproteinemias; the ASTRAL trial comparing renal revascularization to medical therapy found no benefit and substantial increased risk. 
• UKidney A study indicates that many CKD children are not appropriately treated for hypertension, which puts them at serious risk of developing heart disease; illegal organ trafficking in China is more active than ever despite efforts to crack down on the trade;
• Renal tsar's blog comments on the importance of diagnosing depression in those with CKD and newly published guidelines to assist in this endeavor.
• Dialysis and Me Barry starts his new exercise routine and shares what he has learned so far, gets help from a website that helps track your experience.
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to a post by Matt Haughey about his brain tumor diagnosis. (Quite a story!)
• The inner game of PKD Richie feels that that there are PKD patients that may need a level of connection with other patients that social sites don’t provide.
• 3 1/2 Hours of Free Cable reflects on the expectations he had of how he would use his time after his last transplant and the reality of how he spent it.
• Michael W. Newman Care for the more acute patients being treated at Michael's understaffed clinic delays his take-off procedure.
• Kidney Community Emergency Response announces that their next in-person summit meeting will be held on April 13, 2010.
•  Renal BizBlog The FDA warned Shire that a brochure it has been sending patients about the phosphate binder Fosrenol is misleading.
• Unfiltered Hope Sara chronicles the first few days after Darren's transplant.  After a slow start, the kidney seems to be waking up but still isn't functioning well enough yet, and their three-year old daughter, Alice, comes to visit her Dad in the hospital.

Dialysis & CKD Blog Report 11/15

By Miriam Lippel Blum

There are 32 days left to make your comments to CMS regarding the proposed payment rules.  Make your voice heard!  It matters.

Here are the CKD related blogs updated since my last report on 11/12. 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.
• Kamal Shah's Blog Kamal discusses the pros and cons of using lidocaine on his buttonhole sites to reduce cannulation pain, decides to use a little and that helps him immensely; he reflects on his blogging experience after reaching his 400th post. (Congratulations, Kamal!)
• Kaply, Inc. Tracy describes her post-sinus surgery week and doctor appointments, pretty yucky times, is not allowed to lift anything yet which is fine with her as she is still exhausted and dizzy.(We're sorry you feel bad and hope that things will improve.  Thanks for posting something so we knew you were alive, as we in the dialysphere do worry about you.)
• Toastiest posts a music video from The Cure.
• Birdman shares photos from a reunion with dear friends; describes an Oliva cigar tasting he attended; went on a date with his wife to see A Christmas Carol in IMAX 3-D, gives a review of the movie.
•  The Life of a 20-Something With Lupus Flo makes an appointment with her dialysis clinic to get her H1N1 flu vaccination.
• Becky Perry reviews A Prisoner of Versaille by Golden Keyes Parsons.
• On the Road to a Lupus Cure announces that the LFA Lupus Advocacy Day on Capitol Hill will be held on March 15 -16, 2010; the "Could I Have Lupus? awareness campaign ranked #1 for Outdoor Donated Media Dollars.
• Chronic Chick Talk bought makeup to cover the lupus-caused butterfly rash on her face; used to dislike tennis but now enjoys it very much.
• Bud's Ramblings Bud worked in the garden, went to the mall, got through dialysis without cramping.
• Linda Gromko MD kidneycare Linda suggests caregivers formulate a list of what their personal "minimum daily requirements" are for their own care.
• Precious Bodily Fluids critiques data presented by UpToDate on the protein-to-creatinine ratio.
• Renal Fellow Network Last week's poll showed general support for the Kidney Allocation Score which is an alternative method proposed for matching organs to recipients; discusses metformin-induced lactic acidosis; the mechanism of aminoglycosides toxicity.
• Uremic Frost A study reiterates that there is no clinical benefit from revascularization in patients with atherosclerotic renal vascular disease; a Medpage audio report on renal artery stenosis.
• UKidney A study shows that dialysis patients with low body fat are at increased risk of death—even compared to patients at the highest level of body fat percentage; a study has reported that growth retardation in pediatric dialysis patients (the propensity for children to not achieve normal height) can be improved by a type of dialysis known as daily on line hemodiafiltration.
• Dialysis and Me Barry aims to lose 10 pounds and get back into shape.(You can do it, Barry!)
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to a blogpost by Merlin Mann about Marco Arment.
• The inner game of PKD Richie asks, "What do PKD patients want?"
• 3 1/2 Hours of Free Cable Jason gives a vivid description of what his first day on in-center dialysis was like; when he gets down at dialysis, Jason thinks about others who have worse problems, particularly his grandfather who suffers from dementia.
• Michael W. Newman Much to his chagrin, Michael's HD unit goes back to an unsafe 8 to 1 patient/staff ratio.
• PKD World Research shows that preemptive kidney transplantation is associated with lower risk of rejection and graft failure in patients with PKD.
• Kidney Diet Tips discusses the importance of early phosphorus control in CKD.
• Unfiltered Hope Two beautiful posts entered here after a long silence. On the anniversary of Darren's  now failed transplant, Sara posts a poignant letter from the friend who donated a kidney seven years ago to Darren, wherein she wishes that this anniversary date could become a celebration again with another kidney for Darren; late afternoon the same day, Darren gets the call that a kidney is available, he's first on the list, it's a good match, and he is transplanted the next day. (What an amazing and happy story! We wish you, Darren and this kidney a long, healthy and happy life together.)

Dialysis & CKD Blog Report 11/12

By Miriam Lippel Blum

There are 35 days left to make your comments to CMS regarding the proposed payment rules.  Make your voice heard!  It matters.

Here are the CKD related blogs updated since my last report on 11/9. 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.
• Kamal Shah's Blog  Kamal struggles with his parathyroid hormone level (PTH) and wishes someone else could worry about all this stuff for him; has bone pain and is having his Vitamin D level tested, perhaps supplements will help.
• Toastiest shares two more pet pictures to cheer up the mood.
• The Life of a 20-Something With Lupus Flo finished her accounting test, is bringing Clorox wipes to work to clean her computer keyboard to avoid getting sick (Good idea, Flo, maybe wipe down the phone, too.));  Flo decides not to sweat the small stuff.
• Becky Perry has a review of Fit to Be Tied by Robin Lee Hatcher. 
• Jack's Kidney Adventure Jack urges people to write their Senators to support including the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (S.565) in whichever healthcare reform legislation Congress may approve.
• Life on dialysis ... and now life after my transplant! Holly renames her blog, now called Transplant, Tantrums, & Tiaras to celebrate the one year anniversary of her transplant, new life, new blog, she posts a description and photos of her graduation day. (Congratulations, Holly! May  you go from strength to strength.)
• On the Road to a Lupus Cure The Lupus Foundation of America (LFA) invites those living with lupus and interested in learning more about the results of the Benlysta studies to a special Webinar on Monday, November 30, 2009 at 7 p.m. EST. LFA’s Medical Director, Dr. Joan Merrill, will review the results of the studies and answer questions.
• I Am. Are you? Dr. Juan Carlos Caicedo,– a transplant surgeon and Director of Northwestern Memorial Hospital’s Hispanic Transplant Program is named in the 40 Under 40 list that honors 40 hardworking, inspiring innovators in Chicago’s professional community; Donate Life Illinois' Campus Challenge week 5 update; announces Nov. 13 -15 is Donor Sabbath when nationwide, faith leaders will participate in services and programs to educate their congregations about donation and transplantation and the critical need for donors, the post  includes links and a video for more information on religion and organ donation.
• Dialyse This hopes she can hide her cough from the dialysis nurses so she doesn't have to wear a mask during dialysis.
• Bud's Ramblings Bud worries about flooding due to all the rain, his sister is sick.
• Linda Gromko MD kidneycare Linda and Steve hired an interior designer, Jane McClure, to help work out creative ways of hiding their home dialysis paraphernalia when they wanted to sell their house.  This not only helped them successfully sell their house and make their teenage daughter happy,  but has resulted in a wonderful  book co-authored by Linda and Jane. Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor is a book every home dialyzor and caregiver should read.  It gives practical advice on how to camouflage dialysis equipment and inexpensively create new storage so as to make your dialysis space more convenient and appealing, along with discussing how to really live with dialysis at home. It also has material focusing on caregiver needs, including how to recognize and avoid caregiver burnout.  It is an excellent, positive, upbeat book that does not condescend.  It is available from their website http://www.arrange2live.org/, and through Amazon.com.(If you want to know what "the underwear factor" is read Linda's blog post or, better yet, order the book and find out. I have it now on my shelf and am glad I do.); Linda explains what "anniversary phenomenon" is and gives an example from personal experience.
  
• Precious Bodily Fluids has an important case study regarding how acute kidney injury can be caused by a drug interaction between antibiotics and statin drugs.
• Renal Fellow Network has a post on understanding the normalized protein catabolic rate (nPCR); and a post on classification of cryoglobulins and membranoproliferative glomerulonephritis (MPGN).
• Uremic Frost reports on a study showing that the transfusion rate of cancer patients was not lowered despite use of ESA's.
• UKidney  Genzyme Corp. announced that it has launched a powder form of its phosphorus binder Renvela in the United States.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) Alejandro reports that his new Dialysis Patients social network has acquired 110 members with dialyzors in Argentina, Mexico, Spain, Peru, Chile, Columbia, Venezuela, Guatemala, the U.S., Nicaragua, Uruguay, the U.K.,Ecuador, Cuba, and Bolivia. (Bravo, Alejandro, for helping bring them all together.)
• pkdmom2five thinks that it takes a strong person to pull away from a spiritual abuser, and those  still blinded by him sincerely need prayers.
• Dialysis and Me Barry makes plans for storm Ida,  is given the run around by his gastroenterologist who has yet to sign off on clearance for transplant.
• Kidney Notes - Exploring the Intersection of Medicine and Technology has a link to find locations near you for both the seasonal and H1N1 flu vaccines.
• Lemonade and Kidneys Ruth shares photos of a fabulous cake she baked; raised $9,025 for PKD this year. (Way to go, Ruth!)
• The inner game of PKD How PKD may be a 24/7 “Life Sentence,” but it doesn’t have to imprison you!
• 3 1/2 Hours of Free Cable Jason hopes he'll get a kidney before he has to deal with the renal diet, almost got a kidney last month but it fell through; found inspiration to live after his kidney failed from his young niece.
• I need a kidney Jason writes about the documentary on rock musician and transplant recipient Pat Spurgeon that is airing on PBS, links to a public service announcement by Maggie Gyllenhaal, as well as a quiz about organ donation.
• Michael W. Newman describes a disturbing incident that occurred during his in-center HD treatment and wonders if it was retaliation for having complained. (I hope that's not the case.); feels that the presence of a family member who is there to attend to a woman with dementia in the dialysis unit violates HIPPA. (I don't think it does as she is there to assist.)
• PKD World gives links to two more blogs on PKD; according to a Japanese study, an intravascular treatment for intractable symptomatic polycystic kidney and liver due to autosomal dominant polycystic kidney disease (ADPKD) is highly effective; an announcement of a clinical trial in Italy that will evaluate whether the administration of everolimus (1.5 mg/day) can slow down the progression of CKD in ADPKD patients; a charity wine tasting in Missouri to raise funds for PKD.
• Renal BizBlog links to a variation of Google Maps that helps users find flu shots based on their Zip code. Click HERE to access the map.
• Living with PKD One of Heather's fellow runners twists an ankle and might not be able to run the half-marathon with them, Heather contemplates pushing her to the finish line in a wheelchair like Rick and Dick Hoyt.

Dialysis & CKD Blog Report 11/9

By Miriam Lippel Blum

There are 38 days left to make your comments to CMS regarding the proposed payment rules.  Make your voice heard!  It matters.

Here are the CKD related blogs updated since my last report on 11/6. 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 sinus surgery is tomorrow, she's nervous but hoping for relief from six years of sinus infections. (We all send wishes for a good outcome and speedy healing.)
• Toastiest posts Jon Stewart's comedic impersonation of Glenn Beck; Toastie has a terrible day at work and his depression is deep, writes a letter to his doctors asking for urgent help; writes about work difficulties; changes the mood with a great photo of his cat looking happy.
• Hasten down the wire Michael thinks the newly passed House healthcare legislation is at best mediocre, at worst pitifully lacking.
• The Life of a 20-Something With Lupus Flo successfully posts to her blog using her Blackberry; had a great day planned but a lupus flare ruined it; struggled with a badly written exam and yearns for her upcoming Florida vacation. (Warm beaches coming soon, Flo. Hang in there.)
• Jack's Kidney Adventure Jack ponders the illusion of intimacy created by familiarity with a medical condition after a workshop participant pours out her daughter's renal failure story to him and asks for advice.
• On the Road to a Cure has an H1N1 flu advisory for people with lupus.
• I Am. Are you? Donate Life Illinois is giving away free tickets to a special private show with Carrie Underwood at Joe’s Bar in Chicago on December 3. Click over to the Donate Life Illinois Facebook page for details.
• Chronic Chick Talk shares a poem asking lupus to run away; considers the benefits of remote access software; shares a Sheryl Crow video for Music Monday; can't believe 2009 is almost over and wonders what gift to get her daughter for Christmas.
• Dialyse This gets her flu shots, has a bad reaction to the H1N1 vaccine, wishes she could get shots through her catheter instead of being jabbed.
• Linda Gromko MD kidneycare Linda shares what she learned at the Northwest Kidney Center's forum on Medicare bundling, encourages dialyzors to submit comments to CMS.
• Renal Fellow Network A demonstration project showed how human Serum Amyloid P (hSAP) potently inhibits fibrosis in models of renal fibrosis.  The findings raise the possibility of using hSAP as a therapy for kidney diseases with a prominent fibrotic component, such as diabetic nephropathy or chronic allograft nephropathy; four general categories of secondary causes of membranous nephropathy; complement levels and glomerulonephritis.
• UKidney reports that NxStage had strong financial results in the 3rd quarter of this year; a Harvard study showed that women who drink two or more diet sodas a day experienced a 30 percent drop in kidney function over the course of a two decades long study. (Time to switch to water with a slice of lemon added.)
• History of Nephrology has an article about the first successful kidney transplants.
• pkdmom2five posts photos of friends' new baby and congratulates the parents.
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to an article about how to make healthcare better according to Brent James, MD,  who is the chief quality officer at Intermountain Healthcare, a network of hospitals and clinics in Utah and Idaho that President Obama and others have described as a model for health reform; a photo of Halloween at the White House; a link to a comic entitled "Organ Donor."
• Lemonade and Kidneys Ruth considers going back on anti-depressants for the weight loss; shares a photo of her Jack-o-Melons.
• Mid-life ramblings Dianne is appalled at how the H1N1 vaccine was distributed and not distributed in her State of Texas.
• My Chronic Kidney Disease gives a positive review of  Coping with Kidney Disease: A 12-Step Program to Help You Avoid Dialysis by Mackenzie Walser and Betsy Thorpe.
• My New (transplanted) Kidney Al got his flu shots (both kinds) and updates on his condition, lab results, drugs, and exercise 3 1/2 months post-transplant.
• 3 1/2 Hours of Free Cable is a brand new blog. In his pilot post, Jason introduces himself and discusses his history with CKD and transplantation. He hopes to chronicle his dialysis experience for those who are unfamiliar with it, as well as connect with fellow dialyzors.
• Michael W. Newman notes that a nursing home staff person attended the woman with dementia at dialysis and that seemed to be helpful.
• Kidney Diet Tips  A recent study by DaVita dietitian Debbie Benner, MA, RD and collaborators reveals that changing to nocturnal dialysis may make it easier for dialysis patients to eat enough protein and keep phosphorus normal.

MIRIAM'S WEBSURFING FIND: If you need help paying for medications, check out this recently updated  page compiled by psychologist, Ken Pope. Resources for Finding Health Insurance and Affordable Medications. It includes web sites that provide information helpful in finding free or low-cost medications.

The list is annotated and includes links to all the websites. These free sites -- run by groups like Consumer Reports & the U.S.Department of Health & Human Services -- match patients with programs providing free or low-cost meds to those in need who can't afford them. Some offer comparison shopping to find the least expensive reliable sources. While some sites are for all patients, others focus on particular groups (e.g., kids, the elderly, those who were in the military including the National Guard and Reserves).

There are also sites that provide extensive information for anyone searching for good, affordable health insurance. Although it might not be too helpful for those of us with CKD5, it may still be a helpful resource for our families and friends.

One site, e.g., provides "Comprehensive descriptions of public and private health care coverage options offered by every state and by the Federal Government." Another site provides a wide array of "affordable health insurance plans (Individual Health Insurance, Family Health Insurance, Self Employed Health Insurance, Small Business Group Health Insurance, HMOs, PPOs, Health Savings Accounts, Short-term Health Insurance, Dental Insurance, Life Insurance, etc.)" and allows visitors to get quotes, compare plans, and apply online. Another site provides an online "Consumer Guide for Getting and Keeping Health Insurance" for each state and the District of Columbia.

Dialysis & CKD Blog Report 11/6

By Miriam Lippel Blum

There are 41 days left to make your comments to CMS regarding the proposed payment rules.  Make your voice heard!  It matters.

Here are the CKD related blogs updated since my last report on 11/3. 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 how important it is that dialyzors comment to CMS about the proposed rule and gives links for further information and how to submit.
• Kamal Shah's Blog Kamal needs a calm and quiet workspace to do his programming work; five things that Kamal loves and make life meaningful and enjoyable are darjeeling tea, idlis, swimming, his Macbook Pro, and travel.
• Kaply, Inc. Tracy spends a day passed out post-surgery and finds her tolerance low for other people's problems; is not bouncing back as she used to, feels fragile, and is not comfortable with emotional melodrama.
• Toastiest has a photo of dog, Herman, on the couch.
• The Life of a 20-Something With Lupus Flo did well on a test and helped her brother out with a cell phone problem; had a long, busy day with a clinic appointment where she had to deal with a different doctor and then school, but found out she got the highest midterm grade in a class. (Congratulations, Flo!)
• Becky Perry gives advice regarding the return of Redbox Rentals - don't send your husband to do it.
• Life on dialysis ... and now life after my transplant! Holly has a busy week, she graduates and has her abseiling fundraiser, among other activities.
• On the Road to a Cure The Lupus Foundation of America's webchat is  November 11, at 3 p.m. Eastern Time, the speaker is Ms. Cindy Coney, who will discuss "Social Wellness, Making Connections and Helping Others Understand 'What You Go Through With Lupus;" an article about research on micro-RNA's role in interferon's contribution to inflammation.
• Really, I'm as Old as I Feel? Adorable photos of little Abby in her Halloween costumes.
• The Daily Dialysis Mark's gallbladder surgery is this week, Bonni finds his laissez faire attitude about things medical frustrating.
• I Am. Are you? has the Week 4 update from the Donate Life Illinois Campus Challenge; unveils the Charles Tillman commercial
• Transplant Alliance writes how each person is a story to be told, and how often reunions happen because of stories shared and found through social media.
• Chronic Chick Talk put a strobe light inside her Halloween pumpkin; is going to buy two kitchen scoops for Thanksgiving - one for her, one for a hostess gift; has a bad week with computers, needs a new splint for her TMJ , and a tooth pulled; would love to have a portable hot tub to deal with aches and pains, but can't afford one.
• Lupus and Humor Carla has problems with insomnia and finds relief with a meditation CD called "Health Journeys: A Guided Meditation to Help You with Rheumatoid Arthritis or Lupus" by
  Belleruth Naparstek.
• Bud's Ramblings Bud wishes it were warmer so he could go out in his power chair. 
• Linda Gromko MD kidneycare A night out with Steve at a lovely restaurant refreshes Linda's spirits and reminds them both of their loving connection.  She stresses how important it is for dialyzors and caregivers to take time out for non-medical, pleasurable treats. (Doing life-affirming and enhancing things helps keep balance with the difficulties of dealing with CKD5.)
• Renal Fellow Network  The action and importance of a family of proteins called the uroplakins; the findings of the TREAT study  create uncertainty and unease as how best to manage anemic CKD patients in the clinic; results from last week's Poll of the Week: a majority of individuals (64%) felt that their training programs  did a good job of teaching them the art of the renal biopsy, while a significant minority (36%) felt that they were ill-equipped to perform biopsies at the end of their fellowship experience.(I find that pretty terrifying!)
• Uremic Frost a study shows the possible link between low levels of Vitamin D in African Americans to their higher incidence of CKD5; a study shows consuming 74 grams or more of fructose per day  (equivalent to about 2.5 cans of 12-ounce sugary soda) correlated significantly with hypertension; the FDA warns about diabetes drug, Byetta, causing altered kidney function, including acute renal failure and insufficiency; has a link to the latest NephSAP educational installment, he recommends the printed material as the audio versions put him to sleep.
• Neophron's Senescence agrees with a quote from Harvard health economist  William Tsaio: "Before you can set up a health care system for any country, you have to know that country's basic ethical values. The first question is: Do people in your country have a right to health care? If the people believe that medical care is a basic right, you design a system that means that anybody who is sick can see a doctor. If a society considers medical care to be an economic commodity, then you set up a system that distributes health care based on the ability to pay. And then the poor are pretty much left out."
  
• pkdmom2five quotes Psalm 26.
• Kidney Notes - Exploring the Intersection of Medicine and Technology posts a photo of autumn leaves; a link to Amazon's Best of Books; a link to the uroplakins story as seen in Renal Fellow Network; receiving the H1N1 nasal vaccine is anticlimactic.
• Lemonade and Kidneys Ruth starts to cry during yoga. (Sometimes life overwhelms at awkward times. Hang in there.  Virtual hug being sent your way.)
• The Ballad of Billy The Kidney John notes the death of Ratu Viliame Ritova, a noted  journalist in Australia and in his home nation of Fiji.  He was a staunch advocate for the welfare and rights of kidney patients in Fiji.
• The inner game of PKD Richie explores further the meaning of being supported.
• I need a kidney Jason describes the difficulty and suffering of fluid restriction and shares a graph he created to keep track of his intake.
• Michael W. Newman  Michael has a terrible day at dialysis when he is seated near a woman who just got out of the hospital, suffers from dementia, diabetes, is an amputee, incontinent, and screamed that she was in pain for four hours. (A terrible day for both of you. There really should be a specialized facility prepared to deal with such difficult situations.)
• Bridge of Life Excerpts a DaVita Magazine article on the work of DaVita medical missions.

Dialysis & CKD Blog Report 11/3

By Miriam Lippel Blum

CMS announced a 30 day extension of the comment period for the new proposed rule for dialysis payment. Comments on the Proposed Rule are now due by 5:00 pm on December 16. Submit them here. If you don't understand how this rule might impact your dialysis care then go to the Renal Support Network's Kidney Public Policy 101 , or the NKC's bundling resource page and learn.

Here are the CKD related blogs updated since my last report on 10/31. 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 posted a DSEN Halloween pumpkin (To inspire  dialyzors to "squash" barriers to optimal CKD5 care); The Northwest kidney centers has an excellent bundling resource page on their website as part of their effort to engage patients and the rest of the community in the dialysis payment rule making process. In addition  NKC is putting on three forums Nov. 3, 7, & 8; Bill responds to research that finds travel by dialyzors to be dangerous to their health by pointing out that the problem isn't really travel but the lack of self-care; Bill has compiled and made available a spreadsheet of all the responses made thus far to CMS's new proposed rule for ESRD payment, he provides links for where to submit your comments and where to learn more about the rule.
• Kamal Shah's Blog Kamal is deeply touched by a friend who comes to observe how he does dialysis and learn more about Kamal's life with it; there is a shortage of the sterile prep kits that Kamal uses for hemodialysis and he is searching for another supplier.
• Kaply, Inc. Tracy spent Halloween cleaning her house in preparation for next week's surgery; Tracy's morning surgery got delayed so she spent all day in the hospital and had major withdrawal from Diet Coke. (We wish you speedy healing.)
• Toastiest a photo of Toastie in his Halloween costume in 2007; this year's Halloween get-up as Wilford Brimley; a link to another ridiculous statement by Rep. Virginia Foxx (R-NC) regarding the health proposal.
• Birdman posts a religious video from Garden to the City.
• The Life of a 20-Something With Lupus Flo gets lousy service at her pharmacy; Flo's day was okay but it was one of those nights when looking at her dialysis machine bummed  her out and brought her to tears. (We've all been there, Flo, and send a knowing hug from afar.)
• Life on dialysis ... and now life after my transplant! Holly joined a gym and did a real workout (You Go, Girl! You're going to be a jock soon.); Holly lists her workout from her second day at the gym (Inspirational! But I'm exhausted just reading it!); she reports on a new campaign to get people to sign up for the NHS Organ Donor Register.
•  On the Road to a Cure reports that two trials have demonstrated that treatment with BENLYSTA plus standard of care was superior to that of placebo (inactive agent) plus standard of care. It  significantly reduced disease activity.  This should make BENLYSTA eligible for approval by the U.S. Food and Drug Administration (FDA). A groundbreaking achievement!
• I Am. Are you? Morgan D'Organ had a busy Halloween night dressed as Superman.
• The Ins and Outs of Dialysis John continues his physical therapy for a ruptured Achilles tendon while enjoying the lovely Arizona winter sunshine.
• Chronic Chick Talk wonders how many people really have H1N1 since no one is being tested anymore unless they are going in the hospital, wants to know whether or not you are going to get the vaccine and why; recommends a website that helps one determine the best cell phone service to choose
• Lupus and Humor Carla hopes her doctor will prescribe LDN (low-dose naltrexone) to help with her lupus related  inflammation.
• Linda Gromko MD kidneycare Linda makes a plea for a young man with Acute Myelogenous Leukemia who needs a bone marrow transplant; Linda is experiencing caregiver frustration and asks for any tips or wisdom to help her with it. 
• Renal Fellow Network attends a lecture by Rene Bindels and learns a good explanation for why hypocalcemia results from thiazide diuretic treatment; a research paper proposes a link between the loop diuretic (Lasix) and secondary hyperparathyroidism.
  
• Uremic Frost reports on the same research paper mentioned above about the link between the loop diuretic (Lasix) and secondary hyperparathyroidism.
• UKidney Results of the TREAT study - which examined the role of Aranesp in the management of diabetic patients with CKD - indicated here was no advantage to the group given Aranesp and a statistically significant increase in strokes observed in the the treatment group.
• pkdmom2five shares the origins of Halloween and religious objections to its celebration; congratulates a newlywed couple.
• Dialysis and Me has more videos from their vacation to Cape Canaveral.
• Mid-life ramblings sister missionaries from Dianne's church have moved into the spare room in her  home, she enjoys their company, forgot to set her clocks back, is becoming more comfortable with home hemodialysis.
• The inner game of PKD Richie continues his discussion of what constitutes human-to-human  support that helps with coping with PKD.
• Michael W. Newman Michael's call to the Corporate Compliance Center of his dialysis clinic finally brings some positive results regarding the poor staff/patient ratio that endangered dialyzors there.
• Renal BizBlog The renal community will have an extra 30 days to comment on the proposed bundled payment rule after the Centers for Medicare & Medicaid Services extended the comment deadline to Dec. 16 at 5 pm.
• Team Teddy Bear has happy photos from a fun, albeit soggy, Halloween.

Dialysis & CKD Blog Report 10/31

By Miriam Lippel Blum

There are only 17 days left to get your voice heard by CMS in regard to the new proposed rule for dialysis payment. Comments on the Proposed Rule are due to CMS by end of business on November 16. Submit them here. If you don't understand how this rule might impact your dialysis care then go to the Renal Support Network's Kidney Public Policy 101 and learn.

Here are the CKD related blogs updated since my last report on 10/28. 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 Bill reports on the the rapid spreading of the H1N1 virus.
• Kamal Shah's Blog Kamal finds that he can reduce the water he drinks if he drinks hot water instead of cold or room temperature. (A good tip for dialyzors with fluid restrictions.); after discovering that his dialysis machine had a blood leak while he slept on nocturnal dialysis, Kamal buys a Dri-sleeper which is a moisture sensor so an alarm will go off if this happens again.
• Kaply, Inc. Tracy is having vascular surgery next week and sinus surgery the week after that, she would like items of amusement while she heals; Tracy doesn't celebrate Halloween.
• Toastiest Toastie tallies the things stolen from his yard in the last three yeas; a photo of him playing with his cat on a night without dialysis.
• Becky Perry Becky is going to talk to doctor about taking meds for depression, referral to a sinus specialist. is really bothered by restless leg syndrome; her Friday Felicity feature.
• Life on dialysis ... and now life after my transplant! Holly lists all the things she has done in the year since her transplant, how great she feels now, and her plans for the next month.
• On the Road to a Cure The Lupus Foundation of America (LFA) is participating in an international online voting competition that covers major innovations in web technology and social media and would like to take the category of “Best Non-Profit Use of Social Media.” Help them win by submitting a nomination.
• I Am. Are you? shares a video entitled Organ Donation: Waiting for a Second Chance with Bill Coon's sister.  Bill just received a heart and kidney transplant.
• Transplant Alliance has a number of fanciful posts about the World of Warcraft (WOW)- fantasy game. (This was totally beyond me, but I suppose players might enjoy it.)
• Chronic Chick Talk recommends taking an inflatable mattress for comfortable sleeping on camping trips.
• Linda Gromko MD kidneycare is a new blog. Linda Gromko, MD is a family physician whose husband, Steve Williams, receives five Home Hemodialysis treatments per week. Dr. Gromko's blog explores issues of treating Renal Failure at home, making the treatments more user-friendly, and supporting the all-important caregiver in the family on Home Dialysis.  She has some posts introducing her blog.  The latest entry is her advice about getting a fistula to a patient nearing renal failure.
  
• Renal Fellow Network Nathan is presenting a "Renal Fellow Network" poster at the poster session on Saturday, 10/31 (SA-PO2863) if anybody would like to drop by & chat; PPAR alpha activators may aid in the prevention of AKI in high risk patients.
• Uremic Frost  Introduces a new website called Ureakinetics.org maintained by Chicago nephrologist Dr. John Daugirdas.It aims to provide a home for Solute-Solver and related programs linked to urea kinetics and adequacy of hemodialysis; a study shows extreme increases in muscle mass require the kidneys to increase their filtration rate, placing harmful levels of stress on these organs. It may also be likely that anabolic steroids have direct toxic effects on the kidneys; a paper was just presented at the ASN meeting in San Diego claiming younger nephrologists tend to send their patients for renal transplantation preemptively more frequently than the more senior nephrologists.
• Neophron's Senescence a video musical song in support of the public insurance option.
• pkdmom2five Amy has some advice for people who send hurtful comments anonymously over the internet. (Right on! if you don't want your words attached to your name then you probably shouldn't be sending them.)
• Dialysis and Me Barry posts about the importance of organization when you travel with dialysis; he and Laura celebrate their third anniversary and he remembered;  three videoblog entries about  their trip to Cape Canaveral, Laura reviews a Brazilian restaurant they visited.
• Kidney Notes - Exploring the Intersection of Medicine and Technology has information about the potassium in lime juice (For all those margarita drinking dialyzors out there.); a link to a controversial paper he coauthored about how bodybuilding with steroids damages kidneys
• The Ballad of Billy The Kidney links and comments on an interview with Therese Rein, wife of the Prime Minister of Australia, the Rt Hon Kevin Rudd MP.  Ms Rein had some very interesting and worthwhile things to say about identifying one's health strengths and then running with those - rather than being fixated with the negatives.
• The inner game of PKD discusses the meaning of "support" as it applies to those with PKD and finding it on the internet and elsewhere..
• Kidney Diet Tips Diet tips and recipes for Halloween.

Dialysis & CKD Report 10/28

By Miriam Lippel Blum

There are only 20 days left to get your voice heard by CMS in regard to the new proposed rule for dialysis payment. Comments on the Proposed Rule are due to CMS by end of business on November 16. Submit them here. If you don't understand how this rule might impact your dialysis care then go to the Renal Support Network's Kidney Public Policy 101 and learn.

Here are the CKD related blogs updated since my last report on 10/25. 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 Bill argues why CMS should not use race/ethnicity as a basis for a case mix adjustment; the outline of comments from NxStage's Joe Turk given at the CMS Town Hall meeting.
• Kamal Shah's Blog Kamal figures out how to disable the app updates in Facebook (Now you're not going to know how I'm doing in FarmVille.  Phooey!); the technician who assists Kamal with his nocturnal dialysis may be getting married and Kamal has to find a way to get adequate training so he can do without him.
• Kaply, Inc. Tracy posts a cool video of bent metal art; goes to Ikea and introduces a friend to their fabulous Swedish meatballs; Tracy is getting the sweater she desires for Christmas, but also has to have a fistula revision or a stent. (Try to avoid the stent if you can, they don't last very long.)
• Toastiest Toastie breaks his record on the iPhone Skeeball game but thinks he should be doing something else with his spare time.
• Hasten down the wire Michael writes about the social implications of hypermedia.
• The Life of a 20-Something With Lupus While on her bus ride home, Flo watches an intoxicated man try to cross a busy street, she finds a mysterious lump on her knee; she gets scammed by a phony website.
• Becky Perry reviews A Little Help From My Friends by Anne Dayton and May Vanderbilt; a link to the SwagBucks website.
• On the Road to a Cure Factors that influence pregnancy outcomes in women with lupus; BioVid is looking for men with lupus who are 65+ years of age to take part in a survey, which will take about 45 minutes to complete. For those selected to participate, there’s a $75 stipend.
• Really, I'm as Old as I Feel? a photo of 2-year old Abby picking a pumpkin.
• I Am. Are you? Morgan D'Organ needs help deciding on his Halloween costume.  Vote in his online poll.
• Transplant Alliance Gwen has a post about really taking time to get to know someone before getting involved romantically;  writes about the challenges and rewards of being a foster parent.
• Chronic Chick Talk has a Madonna video for Music Monday; describes how she dealt with fleas on her dog; has a hard time keeping her Vitamin D level up; didn't have the energy to deal with a dishonest seller; a photo of two dogs enjoying the smells on a walk.
• Bud's Ramblings Bud loves watching the cows in his neighbor's yard and shares some trivia about cows, likes Bag Balm for chapped hands. (It sounds "udder-ly" ridiculous, but it works!)
• Precious Bodily Fluids has uploaded his entire Fluid, Electrolyte and Acid Base Companion to Sribd and you can download it for free.
• Renal Fellow Network a study shows that renal cilia length increases with acute tubular necrosis; mechanisms associated with saline expansion-induced metabolic acidosis.
• Uremic Frost Dr. Prince supports and signs the Every Other Day Dialysis petition and urges you to do the same.
•  Neophron's Senescence responds to an argument against the public insurance option.
• pkdmom2five shares her son's birthday party photos; thanks her friends who  made the party special.
• Dialysis and Me shares a video of fun and games with his dog, Jojo.
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to a review article that details recent advances in the genetics of atypical hemolytic-uremic syndrome; a link to a heart-wrenching necrotizing fasciitis case in NEJM.
• Lemonade and Kidneys Ruth sets up her Seasonal Affective Disorder (SAD) light machine on her desk to perk herself up.
• The Ballad of Billy The Kidney John links to and comments on a news article about revisions being considered by Australia and New Zealand that would match kidneys from older donors after death to elderly recipients.
• The inner game of PKD Richie participated in the Greater New York City area Tri-State PKD Walk, and would like to find ways to get more PKD sufferers to connect for mutual support and encouragement.
• My New (transplanted) Kidney Al updates on labs and status three months post-transplant.
• DailyHemo - Home Dialysis Advocates New Videos: Grand Opening of Hale Pomaika'i Dialysis Clinic - Hawaii; Carla & Hanna - Home Dialysis; Florence Tewogbade and Her Kidney Disease Journey.
• Biologically Safe Water Filters A new initiative was announced by HHS Secretary Kathleen Sebelius, to fight costly and dangerous health care-associated infections (HAI’s). Hospital water systems are a source of many infections.  Water purification will reduce or eliminate these waterborne infections.  Nephros Dual Stage Ultrafilters can help.
• Kidney Community Emergency Response Qualitest Pharmaceuticals and the FDA notified healthcare professionals of a nationwide recall of Accusure Insulin Syringes. All syringes, regardless of lot number, are subject to this recall. The syringes in these lots may have needles which detach from the syringe. If the needle becomes detached from the syringe during use, it can become stuck in the insulin vial, push back into to the syringe, or remain in the skin after injection. Click here for more information.
• NephrOnline Blogs Mark E. Neumann gives an excellent summary of the presentations given at the CMS Town Hall meeting on the payment bundle.
• Renal BizBlog reports on the extensive backlog of dialysis clinics in Texas awaiting CMS certification.
• Team Teddy Bear Bob visits the Walkway over the Hudson, a new state park made from a former railway bridge into a path across the Hudson River from Poughkeepsie to Highland, photos from the field trip.

Dialysis & CKD Report 10/25

By Miriam Lippel Blum

The clock is ticking everyone! Comments on the Proposed Rule are due to CMS by end of business on November 16. Submit them here. If you don't understand how this rule might impact your dialysis care then go to the Renal Support Network's Kidney Public Policy 101 and learn. If we don't stand up for ourselves, who will?

Here are the CKD related blogs updated since my last report on 10/22. 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 posted the comments he made at the CMS Town Hall meeting on the ESRD Prospective Payment System Proposed Rule; Bill notes that the audio recording of the CMS Town Hall meeting will only be available for four days and thinks that it should be available until the end of the open comment  (It was excellent, definitely worth hearing. I think they are only having it available for four days to limit patient exposure to it. Less exposure means fewer complaints.);  Rich Berkowitz also spoke at the Town Hall meeting and shares his comments, as well as urging us all to submit our written comments for CMS's consideration; Bill posts Dori Schatell's testimony from the CMS Town Hall meeting and applauds her for bringing the 2-day killer gap to the attention of both CMS and the entire renal community.
• Kamal Shah's Blog Kamal reports that the Andhra Pradesh state government in India is extending a program for dialysis with 111 new clinics where patients can obtain dialysis three times a week - free of cost. a revolutionary step.  He also doen't understand people who think less dialysis is acceptable treatment.
• Kaply, Inc. Tracy lists things she loves, including a cashmere sweater, is having fistula surgery yet again and might have to have sinus surgery. (Tracy, you would look gorgeous in that sweater and if you have to put up with all the health stuff you do, darn it, Girl, I think you deserve some cashmere!)
• Toastiest shares a photo of his cat.
• Birdman Sparrow's wife has a cold, a neighbor brings soup, Sparrow needs a keyboard for music and for his transplant pager to go off.
• The Life of a 20-Something With Lupus Flo looks forward to her week off, finds it difficult to juggle nocturnal dialysis and early morning appointments to which she must travel by public bus, she also yearns for her kidney pager to ring.
• Becky Perry Becky's boys have colds, she does lots of laundry, and is addicted to crunching Ice Breaker mints which she thinks is a dialysis thing. (People do all sorts of things to combat thirst and dry mouth.)
• Life on dialysis ... and now life after my transplant! Holly's brother gets "Live Life Then Give Life" tattooed on his back for her which delighted her; Holly celebrates the day she got "the call" for her kidney with some photos and reminisces about it and how her life has changed, she expresses gratitude to the donor and their family for the amazing gift they gave her.
• The Daily Dialysis Bonni is amused to find out that Mark's nephrologist discovered her blog when he googled himself, he noted that she likes to write and uses it to vent, she now has a following of dialyzors, caregivers, dialysis staff...and at least one doctor.
• I Am. Are you? has an interview with Donate Life Illinois’ hard-working Volunteer Coordinator, Jane Lee-Zimmer.
• Transplant Alliance A young woman, member of a donor family, shares thoughts about eye donation.
• The Ins and Outs of Dialysis Gayle describes clinic visits and how she and John lighten the mood.
• Chronic Chick Talk urges supporting the Lupus Foundation of America in America's Giving Challenge to help them win $50,000; some tips for traveling when you have a chronic illness; her Friday Fill-ins feature; a link to a bed cover to keep the bedbugs away from you; a photo of her dog, Mason, hiding under a chair; is surprised at how furniture styles change from year to year.
• Precious Bodily Fluids Joel manages to revive the files from his first book Fluid, Electrolyte and Acid Base Companion and shares the first chapter. He will be editing and revising it to provide a modern, comprehensive tutorial about fluids and electrolytes aimed at medical students and residents.
• Renal Fellow Network A review shows that renal biopsy complications occur in 7.4% to 19.5% of patients. These mostly consist of self-limiting macroscopic hematuria or a peri-renal, or subcapsular, hematoma.
• Uremic Frost has a photo of a thoracic kidney, an extraordinarily rare congenital anomaly. It is more common in men and usually found in the left thorax. It is also completely benign and does not require any intervention; a clever video called "Assault by Salt" about avoiding excess sodium intake; a study showed that higher intensity CRRT (continuous renal replacement therapy) prescription in the ICU resulted in a lot more hypophosphatemia, but unfortunately, no reduction on the mortality rate; a nice video about the NKF Kidney Walk; the testimony given at the CMS Town Hall meeting by LaVarne Burton,  President of the American Kidney Fund; the FDA has just approved APP Pharmaceutical’s Chlorothiazide Sodium (Diuril) for injection. The drug is approved for use in the treatment of high blood pressure , as well as fluid retention in people with congestive heart failure, cirrhosis of the liver, kidney disorders, or edema caused by taking steroids or estrogen;  a study in the New England Journal of Medicine  showed that nursing home residents requiring renal replacement therapy with hemodialysis suffered "substantial and sustained" declines in functional status after the initiation of therapy.
• Renal tsar's blog The UK's Dept. of Health is introducing a new capacity planning software model called MORRIS (the model for optimizing renal replacement investment and services).  MORRIS has been constructed to support policy making and commissioning of renal replacement therapy services for adults in England and is now available for anyone who wishes to use it. NHS Kidney Care will be interested in hearing comments and views of all stakeholders.
• pkdmom2five Amy posts pictures from a family visit to the pumpkin patch; quotations regarding religious revival; photos from the birth of her son, Isaiah.
• Dialysis and Me Barry has been busy making model soldiers and proves it with photos; a video of him and Laura organizing his Warhammer stuff; a picture of another model he will make called the Fortress of Redemption; a video of his participation in the American Heart Association's Heart Walk.
• Kidney Notes - Exploring the Intersection of Medicine and Technology posts a very clever animation from NPR about how a virus does its thing in your body. (After you watch this, you'll go get your flu shot.)
• Lemonade and Kidneys Ruth will be at the Swarthmore Co-op's Food Festival come rain or shine.
• The inner game of PKD  If you sense that you, the PKD patient, could use an injection of fortitude, Coach Richie invites you to contact him to discover how to tap into your natural store of fortitude.
• Kidney Diet Tips has low potassium diet tips and recipes.
• Team Teddy Bear Bob's grandson receives Confirmation at his church.

Dialysis & CKD Blog Report 10/22

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 10/19. 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 has the blog report.
• Kamal Shah's Blog Kamal has trouble cannulating his arterial buttonhole.
• Kaply, Inc. Tracy blames steroid mania for her shopping spree, at least her sinusitis is better, wishes the pills were smaller; has a video supportive of Washington State's Referendum 71 to preserve the domestic partnership law.
• Toastiest Toastie's cat is doing well (as evidenced by video) and has a great vet,
• The Life of a 20-Something With Lupus Flo is almost done with her exams and looks forward to a break during Reading Week; writes a post while waiting for her HD machine to rinse.
• Becky Perry reviews Watch Over Me by Christa Parrish; shares some websites she like.
• On the Road to a Cure The Lupus Foundation of America (LFA) is participating in America’s Giving Challenge.  If you participate they might win $50,000.
• The Daily Dialysis Mark hopes to have his gall bladder removed, he has lost 25 lbs. so he can get on the transplant list, Bonni enjoys their time together.
• I Am. Are you? Update on week 2 of the Donate Life Illinois Campus Challenge; Bill Coon received a heart transplant yesterday.
• Transplant Alliance has advice on writing college admission essays.
• Chronic Chick Talk has a photo of her daughter's favorite shoes; a link to a place that helps to find alcohol detox centers for those who need them; a poem about life being like a roller coaster (It sure is!); some links for places to buy maternity clothes and baby items; a landscape photo for Wordless Wednesday post; suggests businesses change from analog phone systems to internet-based ones to save money.
• Bud's Ramblings Bud had sausage for breakfast instead of cereal and hopes to be able to go outside today.
• Precious Bodily Fluids extrapolates data from an AARP article on commonly prescribed drugs, seems most are prescribed for anxiety, depression, and pain.(What a sad comment on the state of our society.)
• Renal Fellow Network a brief differential diagnosis of hypouricemia, which can be broken down into two main categories: decreased uric acid synthesis, and decreased renal reabsorption of uric acid; how best to design RCTs for new transplant immunopressives; some guidelines for prescribing renal replacement therapy in the neuro ICU; results from last week's poll about strategies to prevent IV contrast nephropathies.
• Uremic Frost a study shows that eating two or more servings of fish a week may increase diabetes risk.(Just when you thought eating fish was good for you!)
  
• Renal tsar's blog a study shows a relationship between supported staff and better patient experiences; recommendations for better acute kidney injury care; a new PD specification is launched at a home dialysis conference that will help patients and units procure high quality and cost effective care.
• Neophron's Senescence recommends both the book Money Driven Medicine by Maggie Mahar, and the documentary based on her book.
• pkdmom2five shares her son's contest winning photograph.
• Dialysis and Me writes about the importance of being your own advocate when it comes to health care.
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to two interviews: David Pogue Interviews Dr. Blumenthal, US Electronic Medical Records Czar; and Dr. Brad Berk, University of Rochester Medical Center CEO, discusses his spinal cord injury.
•  Lemonade and Kidneys Ruth will be making homemade marshmallows for a local food fair. (Yum! I wish I could sample some.)
• Chronicals of the PD Warrior is glad that Roman Polanski is finally going to be brought to justice.
• The inner game of PKD Coach Richie writes about the importance of optimism.
• Michael W. Newman notices that the tech trainee at his HD unit is setting up machines incorrectly and wonders how long it will take till corrective action is taken by the administration or corporation, or will a fatality have to occur first.
• DailyHemo - Home Dialysis Advocates New Videos: Nephron.org - Dr. Fadem Gets a Flu Shot; Pat Spurgeon Does Dialysis on the Road; Doctors Fund Raise for Kidney Benefit.
• Renal BizBlog General Electric unveiled a diagnostic ultrasound device called the Vscan, that looks like a cross between an iPod and a mobile phone.  (Dr. McCoy is smiling somewhere!)

Dialysis & CKD Blog Report 10/19

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 10/16. 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 reports that Baxter corporation is venturing into home hemodialysis with a new system.
• Kamal Shah's Blog Kamal celebrates Diwali. the festival of lights, with lamps that symbolize light in a dark world.  He write about Diane Franks who he considers a light in the world. She is a UK citizen who is giving a living kidney donation to an unknown recipient. (A great act of kindness. May others be enlightened by her act.)
• Kaply, Inc. Tracy has a busy day, includes voting, dim sum, and an exploding microwave.
• Toastiest posts a photo of his cat with some lovely music to listen to; some humor at the expense of Wilford Brimley; a positive message from Toastie's dog, Herman.
• Becky Perry shares links to some websites she likes.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease 17 months post-transplant doctor visit report, Jeff is doing well overall although still has fluctuating BK Virus, still has his fistula and draws blood for labs from it, he will get the H1N1 vaccine and explains why.
• On the Road to a Cure has a description of the Lupus Foundation of America, Mid-South Chapter's  Walk for Lupus Now even held in Nashville.
• Really, I'm as Old as I Feel?  Rob's young daughter takes a spill down the stairs and gets a black eye, she's okay but it gave quite a scare.
• The Daily Dialysis Mark and Bonni settle in to the dialysis routine, Mark is feeling better, Bonni busies herself working on her business and playing Facebook games to fight the loneliness.
• I Am. Are you? shares two emotional journal entries from Bill Coon, a 20-year-old college student currently waiting for a heart transplant.
• The Ins and Outs of Dialysis has a great photo of John, a big cake, and four happy grandkids celebrating his 72nd birthday. (We wish you many, many more healthy, happy years.)
• Chronic Chick Talk loves her new clock that has a temperature gage; she is sick and tired of lupus and fighting with her daughter over homework; bought a compressor for her car's air conditioning from a company that sells auto parts online and ships by UPS; Music Monday video of Sheryl Crow singing "All I Wanna Do;" makes plans for her daughter's sixteenth birthday party.
  
• Dialyse This Cassie feels ambivalent about getting a transplant, also she catches a man staring at her catheter. (Sometimes people stare at my AV fistula, too.  I flex it at them and intimidate them with my hefty, well-sculpted arm muscle.)
• Bud's Ramblings At dialysis, Bud had his arm stuck in a new place and it's very sore.
• Renal Fellow Network  has a list of drugs which can result in hyperkalemia, characterized by mechanisms of action;  describes the Gordon Syndrome,  an unusual syndrome which causes hyperkalemia and metabolic acidosis (It's also called pseudohypoaldosteronism type II, which takes way too long to say and type!)
  
• Uremic Frost announces a community lecture he is giving about renal transplantation, Oct. 20, 7:30 pm in Manhasset, NY; a study from the UK suggests coronary angiogram screening does not accelerate the decline in renal function in patients with advanced CKD prior to renal transplantation; an Australian study reveals a link between alcohol intake and the risk for albuminuria.
• UKidney has a big written exam on CKD and wants everyone to pray that he does well. (We'll pray but you should study, too. Good luck!)
• Neophron's Senescence reports on the current football games and players.
• pkdmom2five became official members in their new church.
• Dialysis and Me has a link to the DSEN 2010 Freedom Cruise, wishes he could go and maybe will go next year.
• The Ballad of Billy The Kidney John reports that Australian scientists have developed an improvement in the solution in which donor hearts are transported – making a donor heart viable for up to 14 hours, as opposed to the current situation of 5 or so hours. They hope to apply it to other organs soon. (Great news! Those Aussies are always coming up with great things!)
• Michael W. Newman After getting no response from the ESRD network, Michael contacts his clinic's dialysis corporation to complain about dangerously low patient/staff ratios and finally sees some improvement.  (Way to go, Michael!)
• Jenna Franks Jenna, 2 1/2 years post-transplant, is now in Paris and enjoying her classes there.  Proud mom, Karol, is home, shares a photo and awaits Jenna's return at Christmas.
• Kidney Community Emergency Response American Regent and FDA notified healthcare professionals that anaphylactic-type reactions, including fatalities, have followed the parenteral administration of iron dextran injection. The Boxed Warning has been modified to recommend administering a test dose prior to the first therapeutic dose and observing for signs or symptoms of anaphylactic-type reactions during administration of Dexferrum.
• Libre Clothing has pictures from the NKF-Dayton Kidney Walk
• Team Teddy Bear The Walk for PKD gets some publicity on the CBS Early Show.

Dialysis & CKD Report 10/16

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 10/13. 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 notes that severe cases of H1N1 are already straining ICU infrastructure causing the editors of JAMA worry about what is to come during the rest of the flu season, dialyzors may find themselves on the bad side of the triage process; Bill will be presenting at the Nephrology News & Issues' free webinar Can home dialysis survive in the bundled payment era? on Wednesday October 21, 3PM EDT: Go sign up to attend!; Bill live blogged the CMS Open Door Forum hoping that he (and the rest of us dialyzors) can get a better handle on the bundle; Joyce Jackson, the CEO of Northwest Kidney Centers, wins the 2009 Warren Featherstone Reid Award for Excellence in Healthcare.
• Kamal Shah's Blog Kamal discusses the pros and cons of telling white lies when it comes to work deadlines.
• Kaply, Inc. Steroids are making Tracy hungry all the time; likes lounging in her new flannel pajamas from Costco; did many things this week...and dialysis.
• Toastiest describes his dialysis experience, it has been difficult adjusting,  but they moved him to a different bed so he slept better this time on nocturnal HD.
• Birdman shares photos of his grandchildren.
• Becky Perry has some website links she likes; reviews Leaving Yesterday by Kathryn Cushman (who lived in the same town when they were children.); Psalm 42.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease adopts a new dog, photos of their dogs.
• Jack's Kidney Adventure six month post-transplant labs are very good, doctor wants him to start exercising,  he has a telangectasia in his gum.
• Life on dialysis ... and now life after my transplant! Holly has been busy this week doing radio interviews, she likes the Natalie Imbruglia song "Glorious" because she feels that she also has been "smiling on the inside" since her life is so much better with her kidney transplant.
• On the Road to a Cure BioVid Corp. -- a market research firm – is conducting a survey of people living with lupus about their experiences with, and attitudes toward, the management of some health conditions.  There is a small stipend for participation.
• Really, I'm as Old as I Feel? Rob's appointment with his doctor goes well, but his insurance wouldn't pay for his flu vaccination so he didn't get one.
• I Am. Are you? updates on Week 1 of the Donate Illinois Campus Challenge; photos from a video shoot with Chicago Bears cornerback Charles Tillman whose daughter had a heart transplant.
• The Ins and Outs of Dialysis John's DaVita clinic offers respite care for the home HD caregivers so Gayle gets to go visit her 93-year old mother.  (All clinics should offer this service.  It would help avoid caregiver burnout and it's the right thing to do,)
• Chronic Chick Talk has a photo of dog, Mason; shares a link for an attorney service that helps domestic violence victims file the necessary paper work for restraining orders; her Friday Fill-in pst; is amazed at how computer touch screens are now found everywhere.
  
• Precious Bodily Fluids a case study involving a woman with an old type B aortic dissection, recurrent TIAs, a carotid bulb tumor, a bilateral pulmonary embolism, and a belief that anticoagulation is bad (Poor lady!); a study showing that nursing home patients do poorly on dialysis, both in terms of mortality and morbidity.
• Renal Fellow Network Revised diagnostic criteria for hepato-renal syndrome;  RFN readers were posed the question, Which RT modality would you choose for yourself if you had CKD5?  The poll results: Home Hemodialysis was vastly preferred over standard hemodialysis (No kidding?), while CCPD had an edge over CAPD.
• Uremic Frost has a link to the Renal Support Network's KidneyPublicPolicy101,  a forum dedicated to the CMS Proposed Rule for CKD / dialysis. Comments are due by November 16th. Please log on and contribute prior to this landmark ruling.(Your voice matters!)
• Renal tsar's blog reports on a document that sets out to  promote continuous quality improvement in primary care services.
• pkdmom2five has a quote about the origins of oak trees; the definition of hypocrite; the weather is great, looking forward to a baseball game, is being annoyed by stalkers.
• Dialysis and Me comments on the story about the first grader who was suspended from school for bringing his Boy Scout camping utensil to school; videoblogs about feeling down (We all have days like that.  Hang in there, tomorrow will be better.); reviews the Space Wolves Codex: Dark Angels vs. Space Wolves.
• Kidney Notes - Exploring the Intersection of Medicine and Technology The Electrolyte Composition of the Red Sea.
• Lemonade and Kidneys Ruth gets the "honest and scrappy" award and shares ten honest things about herself; her husband is out of town, hopes for quiet times and good karma.
• The inner game of PKD Help with keeping your emotions in positive motion.
• LightLizard's Lair had charlatans offer to cure his CKD5, he's glad he accepted his disease and went for traditional western medicine which he credits for saving his life.
• DailyHemo - Home Dialysis Advocates New Video: Machine Eases Fatigue, Long Waits; ESRD Proposed Bundling Rule Presentation; UBS Global Life Sciences Conference.
• Biologically Safe Water Filters a new  EPA rule gives airlines 24 months to comply with the new testing and disinfecting schedules for aircraft drinking water. Nephros DSU, point-of-use, filter can filter biological contaminants well beyond EPA drinking water requirements.
• Encompass Network Partners has an article on foot pain and diabetes.
• Renal BizBlog suggests that one way to address the CROWNWeb's problem of inability for smaller dialysis providers and clinics to batch submit data is to have one person enter the data for multiple clinics within a provider.

Dialysis & CKD Blog Report 10/13

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 10/10. 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 Brian Steele-Sierk, who has Type 1 diabetes and CKD5, points out excellent lessons that CKD5 care could learn from the advances in diabetes care. (I think if the medical community stopped thinking of CKD5 as "End Stage Renal Disease" (ESRD) and realized that those of us with CKD5 don't have to be at the end of our lives if we have optimal dialysis then maybe things would be more likely to change.)
• Kamal Shah's Blog Kamal has a video of his going down the natural water slide at Chaparai; describes the difficulties involved in getting dialysis when he is away from home and how he managed when he skipped treatment on his recent vacation.
• Kaply, Inc. Tracy has done all her Christmas shopping except for her Grandma who is hard to shop for; Tracy's doctor want to treat her chronic sinusitis with steroids and antibiotics or surgery, Tracy expects the steroids to make her psychotic.
• Toastiest tried a new dessert at a Greek restaurant; links to a story about a 4-month old baby being denied health insurance; linked his blog to Facebook; posts an open letter to the Davita staff at his center whose poor planning causes scheduling problems resulting in their rushing Toastie at the end of his treatment.
• Stayin' alive Kathy finds wearing her prosthesis is a lot of work so she often doesn't wear it even as she realizes it is the key to more independent living, she is knitting many items for a charity bazaar.
• Hasten down the wire comments on the reauthorization of three sections of the Patriot Act by the Senate Judiciary Committee
•  Becky Perry posts some links she likes; does the best she can despite health and financial problems, finds that she enjoys and is good at home schooling; reviews Things Worth Remembering by Jackina Stark.
• Jack's Kidney Adventure Jack has a reunion with old friends, has a quick review of major blog moments.
• On the Road to a Cure Amanda Davenport continues her guest blogging about Hell's Kitchen.
• I Am. Are you? 20-year-old Columbia College student Bill Coon shares his thoughts as he waits for a heart transplant.
• Kevin’s Blog Kevin shares a letter written for his daughter's dedication ceremony in his church.
• Bud's Ramblings Bud had a tasty dinner and family visitors.
• Renal Fellow Network posts on dietary measures which have been shown to reduce the risk of nephrolithiasis (kidney stones); acid-base issues related to eating disorders; the electrolyte composition of the Red Sea.
• Uremic Frost An article concludes that physical inactivity leads to an increased mortality in CKD patients (Time to exercise, Everyone!); preferred medications for pain control in CKD.
• pkdmom2five writes a response to an anonymous letter writer.
• Dialysis and Me posts a photo of his workspace and some of the model soldiers he is working on.
• Kidney Notes - Exploring the Intersection of Medicine and Technology has a photo of a sign precluding healthcare practitioners from Minnesota, Vermont, or Massachusetts from eating the munchies at a pharmaceutical company exhibit; a med/peds hospitalist writes on resources for nephrology; medical students at the University of Medicine and Dentistry, New Jersey required to have an Apple iPhone or iPod touch (I guess smart phones make smart docs?); an updated the list of kidney diseases for patients.
• Michael W. Newman is very concerned that this weekend a technician trainee will be the only tech available at his HD unit. (I would be scared. too. Time to file a complaint with the Medicare Network again.)
• PKD World has a link to an article about why people choose to become live organ donors; links to PKD blogs.
• Kidney Community Emergency Response Unomedical Inc., a manufacturer of medical devices, today announced that it is conducting a voluntary recall of certain units of the single-patient use Manual Pulmonary Resuscitator (MPR).
• Libre Clothing has a photo of a happy dialyzor wearing Libre's women's oxford button-up shirt.
• NephrOnline Blogs CMS is likely to delay full implementation of CROWNWeb Project until March 2010 due to bugs in Version 1.2 of the program and complaints by small providers of the labor-intensive data delivery process.
• Team Teddy Bear photos from the 2009 Hudson Valley Walk for PKD.

Dialysis & CKD Blog Report 10/10

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 10/7. 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 notices that most of the comments on the new bundling rules seem to revolve around the oral drug inclusion.  He points out that there are many other important concerns that need to be asked and addressed.
• Kamal Shah's Blog Kamal continues the description of his vacation, with photos, including a very exciting ride down a natural water slide.
• Kaply, Inc. Tracy is feeling unsettled; discusses her grandmother's stomach surgery with her brother.
• Toastiest has photos of his bruised fistula arm, also his dog and cat; a video of Rachel Maddow commenting on Obama's Nobel Peace Prize.
• The Life of a 20-Something With Lupus reports on how her school tests are going; will be working on Canadian Thanksgiving; writes about people on the bus who irritate her.
• Becky Perry reviews Measure of Mercy by Lauraine Snelling; some web links she likes; her Friday list of things that make her happy; a link to a free scrapbooking search engine.
• On the Road to a Cure highlights a helpful book available in their store: Coping with Lupus by Dr. Robert H. Phillips.
• Renal Fellow Network writes about different and more accurate equation-based calculations used to determine total body water; results of a Poll of the Week regarding managing the potassium bath in a patient with hyperkalemia; an explanation of T-regs and the effect of the currently used immunosuppresant medications on T-reg function.  
• Uremic Frost Fosrenol beat Renagel in a recent study.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) adds a FaceBook link to his blog.
• pkdmom2five shares family photos from a road trip.
• Dialysis and Me video blogs about grocery shopping; links to Keith Olbermann's excellent commentary on healthcare reform.
• Kidney Notes - Exploring the Intersection of Medicine and Technology Eight ways physicians can use Evernote.
• Lemonade and Kidneys Ruth's auction event went well, she had lots of friends help, and is exhausted from it all.
• The Ballad of Billy The Kidney John is off on a short vacation to city of Adelaide in South Australia and he reflects on the very different (to the rest of Australia) system of organ donation there.
• Living with PKD Heather goes to the ER after three days of vomiting, turned out to be the stomach flu, doctor gave her Zofran (an anti-nausea drug) that helped her.
• The inner game of PKD Richie explores the idea of having a teleconference on PKD issues, contact him with your thoughts on this.
• Nathan's PKD  Nathan is sick with vomiting and diarrhea, gets tested for CMV; the CMV test is negative and after lots of fluid and some Immodium he is feeling much better.
• My New (transplanted) Kidney Al's latest clinic visit noted high blood pressure and raised creatinine, has some medication changes and must monitor his BP at home, otherwise he's pretty well.
• Michael W. Newman Michael is concerned about the quality of care at his HD unit since as a cost-cutting measure they have only one technician available for nine patients. (That certainly sounds inadequate. A recent article on best practices recommended a ratio of one technician to three or four patients. The Medicare rules for coverage require that a facility must have staffing sufficient so that quality care is provided to dialysis patients that is consistent with the patient plan of care and professional practice standards.  I don't think they set a minimum ratio but often state laws do. I suggest you find out what standards exist in Florida law where  you are and check with your region's ESRD network to file a complaint if you feel your care is compromised by inadequate staffing. Florida is Network 7. Here is their toll-free phone number: 800-826-3773 or local 813-383-1530, and here is a link to a Medicare publication on how to file a complaint regarding a dialysis center.)
•  PKD World has a link to details of 17 current drug / non-drug trials for PKD; an article about PKD by Dennis Byrne from the Chicago Tribune; a Facebook link for people in the UK with polycystic kidney disease (PKD), their friends and families; a sad story from India about a woman whose husband dumped her after selling her kidney.
• DailyHemo - Home Dialysis Advocates New Videos: Wearable Nano Dialysis.
• Libre Clothing has a link to a feature article about their company in the October issue of Renal Business Today.
• KIDNEYBLOG Stephen Fadem, MD, explains the importance of getting your flu shot and posts a video of him getting one.

MIRIAM'S WEBSURFING FIND: If you don't get the Renal Support Network's (RSN) newsletter, Live & Give, you should.  It's a wonderful resource for important information and upbeat features to raise your spirits.  In their Spring/ Summer 2009 issue they had a moving article written by photojournalist, John F. Martin, about his kidney transplant surgery where his father was the donor.  He is still going strong nine years after his transplant.

John also has a super website called In focus: A photojournalist chronicles his journey through kidney failure where he tells his whole story both in text and photographs.

The chapters of this Web site chronicle my journey through the kidney transplant process, from early discussions with my doctor, to dialysis and ultimately to the surgery on March 31, 2000.

My goals with this site are to help patients and families better understand what may be ahead for them on the kidney failure road and to demystify the transplant process.

It is an excellent site, well done, and very moving, as well as informative and artistic.  Check it out!

Dialysis & CKD Blog Report 10/7

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 10/4. 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 Looking at recent data from the NIH, Bill notes seasonal patterns in people transitioning to needing either dialysis or transplant and wonders why that is; Bill announces  a Renal Support Network (RSN) Patient Lifestyle Meeting (PLM) that has a great program planned, to be held on October 17 in Seattle. Registration is free and can be done online (PDF file); Bill agrees with suggestions for patient empowerment discussed in The Atlantic's article  Power to the Patients and contends that offering financial incentives will go a long way to  improving patient performance and outcomes; Bill comments on a survey that showed that transplant surgeons disapproved of cash payments to organ donors but would consider insurance premium payments acceptable; Bill was impressed and moved by Keith Olbermann's commentary on healthcare reform and reflects on how different the values of the current Senate are from the one in 1972 that passed the dialysis entitlement.
• Kamal Shah's Blog Kamal shares details and photos from his trip to Vizag and Araku.
• Kaply, Inc. Tracy got her new Terry Pratchett book and has put everything on hold while she reads it.
• Toastiest Toastie's dog, Herman, is developing tolerance for other dogs; is concerned about speeding buses; reviews his interests over the last five years.
• Hasten down the wire Michael critiques Dan Gilmor's new rules for journalism.
• Becky Perry shares some website links she likes; reviews Extraordinary by John Bevere; struggles with the difficulties CKD has brought to her life and finds hope and strength in her faith despite it all.
• Life on dialysis ... and now life after my transplant! Holly's brother had a serious bicycle accident and surgery but he's doing better now; announces a star-studded fundraiser for Live Life Then Give Life to honor her friend, Jess, that will take place on the evening of October 16th in London; Holly gets another award.
• On the Road to a Cure reports that a national health care consulting firm issued recommendations on ways to overcome the barriers that have obstructed lupus drug development; Lupus Foundation of America's Work Disability / SSDI / Health Insurance Webchat will be on October 14, at 3 p.m. Eastern Time, with guest expert. Sheri Abrams.
• Really, I'm as Old as I Feel? has a cute photo of his daughter, Abby.
• I Am. Are you? The Donate Life Illinois Campus Challenge begins today, has links to participating colleges; Julie shares the latest chapter from the Illinois Donor Diaries about her late husband, who was a transplant recipient. 
• Kevin’s Blog Kevin describes his excitement with the new Bible class he is taking.
• Life on Dialysis Saamir reflects on what he has learned in his two years of blogging; shares photos and describes a trip to an unusual fort.
• Dialysis Postings couldn't get to dialysis because of the flooding in Manila, stresses the importance of being prepared for emergencies.
• Chronic Chick Talk has a music video of I love Lucy, Babalu; her auto insurance premium goes up so she's shopping for a less expensive company; cold weather makes it hard for her to get out of bed; doesn't like looking in the mirror because of weight changes; got  her flu shot but is not going to get the H1N1 vaccine.
• Bud's Ramblings has more photos from the family cookout
• Precious Bodily Fluids has a link to a good online resource for evaluating proteinuria in pregnancy.
• Renal Fellow Network A recent study provides evidence that Cystatin C, a cysteine protease inhibitor, does a better job of predicting mortality than creatinine; notes the impact of the work of the current American Nobel Prize in Medicine winners on renal carcinoma; discusses a review article entitled "Can we personalize treatment for kidney diseases?"that explores the application of genomic and molecular data to better target the delivery of health care, facilitate the discovery and clinical testing of new products, and help determine a person's predisposition to a particular disease or condition
• Uremic Frost notes the controversy over the flu vaccines this season and that Fresenius has goals  to  offer to vaccinate 100 percent of its patients and health care workers.
• Renal tsar's blog clarifies a policy regarding the pneumococcal vaccine for people diagnosed with CKD.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish)Alejandro shares a letter from a brave and determined dialyzor in Peru who got a scholarship to study in Europe and is going to go even though affording dialysis while he is there will be a tremendous financial challenge.
• pkdmom2five shares Nicholas Kristof's NY Times editorial about how sometimes donating a kidney to a relative can end in losing health insurance; a message to abusive pastors.
• Dialysis and Me has an update and pictures of his true scale space marine project; shares a link to a blog he finds inspirational; decides he is going to get a job and videoblog's his day's activities turning in job applications. (I hope the Game Boy store calls, you'd be perfect for that!)
• Kidney Notes - Exploring the Intersection of Medicine and Technology HealthGrades makes it difficult for physicians to edit their info; a New York Health Department study shows how blended drinks from coffee chains foster calorie overload. (I had no idea that  a large Dunkin’ Donuts Vanilla Bean Coolatta (32 oz) would set you back 860 calories!  Scary!)
• Mid-life ramblings Dianne shares a religious video; is home after NxStage home HD training, it was hard at first but she is now feeling more confident, got support from NxStageUsers Forum, still struggling financially, but feels blessed, nonetheless.
• The inner game of PKD Exploring how you characterize yourself can lead to new insights.
• Nathan's PKD Nathan has been sick for a week and was tested for CMV virus, results expected Friday.
• I need a kidney Jason gets a permacath (Hickman catheter) for dialysis access and treatment is imminent, he wonders about showering with the catheter. (Take a look at CoverCath for help with the showering problem.)
• Jenna Franks Jenna and her Mom are staying near the Eiffel Tower and having a great time in Paris, has a link to photos.
• PKD World reprints Nicholas Kristof's NY Times article "Dad's Life?  Or Yours?; reports on new and upcoming treatments for PKD.
• Biologically Safe Water Filters   Using ultrapure water, will allow dialysis clinics to lower their cost per treatment by saving on EPO needs.
• Encompass Network Partners has an article on peripheral arterial disease (PAD) and limb loss.
• Kidney Community Emergency Response  Philips Corp. announced that it is voluntarily recalling approximately 5,400 HeartStart FR2+ automated external defibrillators (AEDs). This recall is being conducted due to the possibility of a memory chip failure that may render the device inoperable.
• NephrOnline Blogs Mark Neumann reports that the National Renal Administrators Association (NRAA) conference starting this week will be focused on the issues and problems engendered by the new bundling proposal.
• Renal BizBlog has a link to an extensive interview session with Dr. Anthony Fauci, who is director of the National Institute of Allergy and Infectious Diseases. In short, Fauci  is the government's point man for tracking H1N1 and finding the answers in combating it.
• Kim Hoben's Blog Kim walks and raises $1000 in the Kidney Walk, while she appreciate heartwarming stories about transplants she feels that if people really knew how awful in-center dialysis is they would be more disposed to signing up for organ donation.

Dialysis & CKD Blog Report 10/4

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 9/30. 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 Bill can't figure out if the extended dialysis MSP is or is not included in the Senate's health insurance reform bill (Which goes to show how crazy and confusing this all is!); then Bill finds out it has NOT been included, and thinks that although this is good news we're not out of the woods yet; Bill shows how DaVita's recent SEC filings illustrate the cost of profit.
• Kamal Shah's Blog Kamal is off on a trip to the Bay of Bengal.(Have a great time and no tsunamis!)
• Kaply, Inc. Tracy's allergies are acting up, she agrees to go to Maine in the winter for a family holiday even though she hates the cold; shares a weird text-message conversation about cannibalism with a friend who just got cell phone.
• Toastiest is not at all interested in buying a yearbook from his alma mater; his employer has changed its health plan benefits, now requiring higher deductibles and mail-order pharmacies which Toastie doesn't like; celebrates his cat, Zellouisa's 12th birthday with photos; Cher's "If I Could Turn Back Time" video; ends his nocturnal HD session early because he awakens clammy and can't stand it anymore, is very despondent.
• Stayin' alive Kathy is disappointed with The Gazette that dropped her blog and reminisces about her career in journalism.
• Hasten down the wire A tweet about the demise of the Saturn company gets Michael interviewed by the L.A. Times on the subject; shares seven sound proposals to get America back on track, according to Jonathan Tasini's new book The Audacity of Greed: Free Markets, Corporate Thieves and the Looting of America.
• The Life of a 20-Something With Lupus Flo is still feeling slightly unwell.(We hope you feel all better soon,)
• Nitey Nite- a nocturnal dialysis blog Michelle's vertigo precludes her driving right now so her husband has to drive her to dialysis.
• Becky Perry reviews It's Not About Him by Michelle Sutton; shares some Web links she likes; her Friday list of things that make her happy; reviews Intervention by Terri Blackstock.
• On the Road to a Cure Amanda Davenport gives her take on the latest Hell's Kitchen episode.
• I Am. Are you? has a powerful and moving video, Samantha's Story, narrated by a father whose teenage daughter became an organ donor after a fatal car crash.
• The Ins and Outs of Dialysis enjoys early morning chats on the patio with her husband, they start a bucket list of things they would like to do.
• Chronic Chick Talk started home schooling her daughter, saw the rheumatologist and feels like a pin cushion; some tips for those setting up their own business; had a disappointing tomato crop this year; describes her experience getting a cash advance loan; her Friday Fill-In feature; had some tests that finally gave a diagnosis and name for the pain in her legs, she is grateful for medical advances and finally finding a doctor who could respond to her complaint.
• Bud's Ramblings Bud had a great time at the family cookout and shares photos of the farm.
• Precious Bodily Fluids describes a dialysis patient he has with a super-high PTH;  Joel attends a lecture by a noted nephrologist and is dismayed at the pervasive presence and impact big pharma has on guest lecturers at the medical school,
• Renal Fellow Network a Swiss study shows that a chemical commonly found in liquorice can lower potassium levels in CKD5--maybe a sweet alternative to kaexalate;  reports poll results about  the trials and tribulations of renal fellows; a study shows despite evidence that statins are unhelpful in regard to cardiovascular mortality in people with CKD5, nephrologists continue to prescribe them.
• Uremic Frost thinks that the CKD staging system should redone, eliminating the current CKD 1 & 2 categories.
• Renal tsar's blog has a link to a CKD e-learning package.
• Dialysis and Me a new game catches Barry's eye; asks for suggestions for projects he can do while on dialysis;  videoblogs about the University of Florida's plan for zombie attacks (Halloween preparation I warrant.); a video of his dog chasing his tail; a video of his trip to homecoming at his high school.
• Kidney Notes - Exploring the Intersection of Medicine and Technology has a funny cartoon about someone asking for a USB implant in his arm; a collection of funny tweets about swine flu; a link to the new PubMed; an extensive list of kidney diseases; a link to an article about how dangerous eating ground beef can be.(Reading this article will make you a vegetarian!)
• Lemonade and Kidneys has $8,000 dollars worth of items for her auction.
• The Ballad of Billy The Kidney nominates the late Janine Murphy as this month's great figure in transplant history. She was the Chief Executive Officer of the Royal Australian Mint and a liver transplant recipient.
• My Chronic Kidney Disease finally sees some improvement in his lab tests and theorizes what the causes might be. (We're glad for you and hope it continues.)
• Living with PKD Heather finds unsolicited health advice both annoying and amusing.
• My New (transplanted) Kidney Al is 9 1/2 weeks post-transplant and is doing so well that his care has been transferred back to his home doctor and he moved out of the Kidney Condo.
• Michael W. Newman links to my Websurfing Find piece about his blog.
• PKD World shares a story about infants who died from autosomal recessive polycystic kidney disease; a link to a story about a man's life with PKD, from discovery to transplant; CoachRichie's article entitled "What is Your Disease Keeping You From?"; links to three interesting articles -- one is about a kidney transplant (Warning: Graphic photos),  two is about a woman's search for a living donor; and the the third is about a woman who insists that her fertility doctor implant embryos in her that have the PKD gene; an article about Monash University's research on the microscopic antennas in the kidney that are involved in the organ's repair process, that may help find a cure for PKD.
• Berns on Nephrology In this video blog, Jeffrey Berns, MD, considers the impact of healthcare reform on the large group of uninsured patients with early-stage CKD.
• Kidney Community Emergency Response The U.S. Food and Drug Administration today alerted health care professionals to a change in heparin manufacturing that is expected to decrease the potency of the common blood-clotting drug. (Check with your doctor to see if you need to change your dosage.)
• Renal BizBlog Medicare's Hospital Compare site is up and running on the web. You can see how a hospital fared in a number of important quality measures and compare as many as three hospitals head-to-head.