Dialysis & CKD Blog Report 2/4

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 2/1. 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 a CMS transmittal relating to the Quality Improvement Program makes no reference to bone measures and wonders if this means oral drugs will not be included in the bundle? (Since that last post, CMS has called for a technical expert panel to look at various quality measures, including mineral metabolism, so this may mean that oral drugs are still to be part of the bundle.  Time will tell.)
• Kamal Shah's Blog Kamal is thrilled to learn that NxStage is coming to the Middle East and hopes India will be next; he debugs a problem on his iPhone.
• Kaply, Inc. Tracy would like to write a web comic and is looking for artistic assistance; she looks forward to her first Zipcar rental, may be developing arthritis in her hands, and shares a list of things she doesn't care about.
• Toastiest Toastie thinks Republicans are crazy and that bipartisanship with them is a fruitless endeavor; he wishes people and staff would be quiet during his nocturnal dialysis sessions so he could get some restful sleep.
• The inner game of PKD Richie explores how the metaphors used to describe the experience of PKD can alter one's perceptions.
• The Life of a 20-Something With Lupus Flo's hemoglobin drops to 6.8. she doesn't know why and  is exhausted.
• Becky Perry reviews Beguiled by Deeanne Gist; reviews Never Say Never by Lisa Wingate; has committed to baking more bread at home, has her monthly labs drawn, has excess fluid so she's doing an extra manual PD exchange daily, she wishes she felt better and is tired of feeling tired.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease Jeff no longer has BK virus in his blood and his pressure ulcer is better, his sister has gall bladder problems.
• Transplant, Tantrums, & Tiaras Holly got hired to work in a childrens nursery; has been doing more speaking for Live Life Than Give Life and makes a new friend.
• On the Road to a Lupus Cure The Lupus Foundation of America (LFA) has created 4 new lupus awareness videos, where people who are living with lupus share their personal stories, the first video is posted here; has updated guidelines for cardiovascular health for women.
• Really, I'm as Old as I Feel? Five inches of snow fall, Rob takes young daughter Abby to a birthday party held at an inflatable moon bounce place; a photo of Abby scaling a moon bounce wall.
• I Am. Are you? The donation mascots are getting together for some special training in preparation for National Donate Life Month in April -- 5 Mascots, 1 Month, 1 Mission...Register Organ Donors.  See the funny video posted.
• The Ins and Outs of Dialysis John has a venogram and an angioplasty.
• Chronic Chick Talk writes about how debt consolidation can be helpful if you lose a job and get into financial trouble.
• Lupus and Humor Carla lists and gives brief reviews of seven lupus books she has read or is reading.
• Bud's Ramblings Bud has had a tough time the last few weeks, he passed out twice and ended up having a defibrillator implanted, then he got pneumonia, but he's doing better now.
• Linda Gromko MD kidneycare Linda tells caregivers to surround themselves with supportive people and stay away from people who sap your energy; Linda starts a four-part series of posts on caregiver burnout. Part One is on the importance of recognizing the signs of burnout; In Part Two she spells out the difference between burnout and depression.
• Precious Bodily Fluids Joel describes a case of someone with the highest aldosterone he'd ever seen, the diagnosis was Gitelman's syndrome; has a table comparing CKD5 mortality rate with some other diseases.
• Renal Fellow Network has a description of how Luminex beads (used in tissue typing labs) work; a post on the actin cytoskeleton of the podocyte; a funny story about a renal fellow and a lab rat; last week's poll results:  who should provide funding for large, randomized controlled drug trials?  Most respondents (58%) chose the diplomatic answer and said that it should be a combination between government and pharmaceutical companies, 24 % thought it should just be government's responsibility, and 7% thought it should be the pharmaceutical industry's.
• UKidney Research performed at UC Santa Barbara points to the drug rapamycin as a potential treatment for polycystic kidney disease; posts Bill Peckham's article questioning urea as a dialysis adequacy marker.
• Nephron Power  has an article on post bone marrow transplant thrombotic microangiopathy  (TMA); a clinical case description and diagnosis; a recent study from Canada in the latest issue of JAMA Feb 3, 2010 talks about the inclusion of proteinuria in CKD staging, they propose subdividing stage 3 in parts -- proteinuria, no proteinuria -- to indicate those at higher risk for CKD5.
  
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to an article by Jay Parkinson in Business Week: "How to Redesign Health Care;" links to an article that gets 10  healthcare workers perspectives on the new iPad.
• Lemonade and Kidneys Ruth writes she has nothing to blog about...but then tells us she has anxiety at work, a new blood pressure medication, her kids got stellar report cards, and she says she won't permit them to get driving permits unless they learn how to fold laundry.
• Rob and Danielle's Kidney Blog Danielle is scared that Rob will get too sleepy to perform his work duties to the best of his ability on Tuesday and Thursday mornings, after he comes off from his nocturnal HD treatment, she gives a brief description of how dialysis works.
• ....And Bells on Her Toes Kelly is worried when her pharmacy doesn't have one of Alex's immunosuppressives available, tells us how much all the medications cost and hopes their insurance plans will continue to cover them; Alex has his first clinic visit two weeks post-transplant and labs are great, he's starting to feel like a human being again and Kelly is happy.
• Transplant Alliance has an article about a fashion company in Miami; and some weird spam posts.
• Michael W. Newman Michael is going for a breathing test, thinks he has late-acquired asthma, hopes an inhaler will help.
• Berns on Nephrology Tests for PTH levels vary widely in reliability and accuracy. In this video blog, Dr. Jeff Berns cautions about relying on these assays in clinical decision making for patients with CKD.
• Encompass Network Partners Men are more likely to suffer from diabetes-related health problems, according to the American Diabetes Association.
• Renal BizBlog CMS is looking to recruit technical experts by Feb. 17 to meet March 10-11 and develop new quality measures for the End-Stage Renal Disease Program.
• My New (transplanted) Kidney Journey Happiness to Al is a good night's sleep and gut regularity; his labs are fine and he feels good post-transplant, still worries about rejection.
• 3 1/2 Hours of Free Cable Jason got pneumonia but is on the mend, explains the concept of "dry weight" and its importance to the dialyzor.
• I need a kidney Jason wishes that kidney disease got more attention; Jason is getting the "I Wear Your Shirt" guys to publicize his need for a kidney again on the web, he is also exploring new options with his transplant team for transplants that come from people who do not share his blood type. (We wish you success in finding the kidney, Jason,  however you find it.)
• Mushroom's Blog Mushroom is haunted by ghosts from his time at war in Vietnam.

Comments

[Carol Musick]

What a wonderful idea to go on a cruise as a group with your NxStage machines! Hubby and I are going with family but would feel more secure with another NxStage on board. Would appreciate any tips about flying and/or cruising with NxStage.