Dialysis & CKD Blog Report 7/19

By Miriam Lippel Blum

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

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

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

Here's a quote from their blog:

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

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

Comments

[Simon Prince]

thanks so much!
Keep up the good work

Simon