Dialysis & CKD Blog Report 8/9

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 8/6.   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 Peter describes what he sees as a troubling shift in the focus of medical ethics and its implications for the healthcare reform being debated now in Congress; Peter updates on the grim statistics regarding the death rates of H1N1 and warns all to be prepared; Bill announces that Harvey Wells is interviewed on the latest KidneyTalk podcast Across the Country - Dialysis Style, and particularly liked the segment on self-cannulation at the 22:50 mark.
• Kamal Shah's Blog Even though yoga has helped him with pain and well-being in the past, Kamal cannot consistently devote the time needed to do it. (It sure is difficult with CKD5 to fit all you need in and still work and have a life.)
• Kaply, Inc. Tracy writes an irate post to the inconsiderate person who parked halfway in her parking spot; to explore her feminine side, Tracy gets a manicure and pedicure and likes the results.
• Toastiest has photos of his dog and cats; watched an emotional scene from movie Back to You and Me on the Hallmark Channel.
• The Life of a 20-Something With Lupus Flo is relieved not to be having a lupus flare up, a delayed delivery of home HD supplies threatens to make her late for an appointment. (I hate when that happens!)
• Nitey Nite- a nocturnal dialysis blog has gotten four more posts at her new blog I'm famous - give me a kidney!
• Becky Perry lists four things that make her happy.
• Jack's Kidney Adventure Jack enjoys watching his dog outside in the morning, has a good clinic visit although his doctor referred him for a gastric emptying test to figure out why he coughs after meals, and has an interesting discussion with his doctor regarding their differing perspectives on the New Yorker article about people who donate kidneys to strangers.
•  On the Road to a Cure Important advisory regarding H1N1 flu and people with lupus.
• Really, I'm as Old as I Feel? Rob details their trip to St. Louis along with some nice photos of children and a surprised deer.
• Bud's Ramblings Bud reminisces about candy cigarettes, big red lips, wax bottles filled with different flavored liquids, and frozen Coke popsicles. (I remember those, too.  Yum!)
• Precious Bodily Fluids looks at data from a number of studies about the impact of alcohol on blood pressure and survival.  The conclusion he draws is that sometimes stopping drinking may actually increase rather than decrease the risk of death.
• Renal Fellow Network has a video about the "Lifeport Kidney Transporter"--a new hypothermia-perfusion device which functions as a significant upgrade from the standard cooler in which donor kidneys are transported from place to place; descriptions of some of the main IV iron formulations and their unique attributes; a discussion on the timing of dialysis access placement, a study showed that older patients frequently have more unneeded procedures in this regard.
• Uremic Frost  In observance of the ANNA Kidney Disease Awareness and Education Week August 10-14, Fresenius is offering 100 free Treatment Options Programs (TOPs) classes across the United States; writes about dialyzor Shad Ireland's completion of his cross-country bike ride.
• pkdmom2five writes that people don't understand that her family is hurting because of others' irresponsibility and posts Psalm 35 for inspiration.
• Lemonade and Kidneys Ruth shares some amusing items that came up in a Google Analytics search.
• Mid-life ramblings Dianne feels more confident after her second week of NxStage training, her husband is figuring out how to rearrange the furniture, the plumber comes next week to install a drain and line for the PureFlow equipment that is coming next week.
• The inner game of PKD discusses how to “self-talk” yourself into a more positive attitude.
• Mushroom's Blog has photos from a trip to the Sawdust Art Festival.
• I need a kidney Jason writes about the birth of his daughter and has photos; a friend gets Jason's website on a t-shirt being worn by Jason Stadler, owner of the I Wear Your Shirt site, as he flies across the country publicizing whomever is on his shirt that day. (I hope lots of people see it and visit your site.)
• My New (Transplanted) Kidney Al details his second clinic visit, creatinine is still high so he has another biopsy to see why; photos of downtown Vancouver; kidney is just bruised, no other problem, Al feels stronger and goes to a tailgate party; Colleen writes when Al doesn't feel well, post-transplant feels like a roller coaster ride of ups and downs; Al wonders if the prednisone or Tacrolomis is causing the restlessness; slept a night with help from sleeping pill and took part in the Kidney Walk and walked 1 km. (Good job!)
• Writings along the cave walls - Ashbat's Lair A technician turns off the fluid removal goal on Ashley's machine so she leaves heavy but is able to schedule an extra session, gets overheated at work and feels nauseated, and finds out she is below her expected dry weight.
• Renal PatientView Blog British units that use Proton software will now be able to see various liver function tests and results for iron and uric acid.
• Encompass Network Partners Indian celebrity, Shammi Kapoor, shares his experience with peripheral vascular disease to bring attention to Vascular Awareness Day.
• Kidney Community Emergency Response Expresses thanks to everyone who made "Surviving the Storm: Disasters and Dialysis" a success and for those who could not attend, you can review the presentations and handouts posted at http://www.kcercoalition.com/cpp.htm.
• Kidney Diet Tips  Genzyme Corp. announced that Renagel®, a phosphate binding medication, will no longer be distributed in the US after September 30^th.  A newer binder called Renvela® will replace it.  One advantage of the newer drug is it contains a carbonate buffer which may help improve serum bicarbonate levels. (If you take this you should check in with your doctor about it.)
  
• Team Teddy Bear announces that the 2009 Hudson Valley Walk for PKD is coming up on Saturday, September 26th, has links to donate to support walkers.

Comments

[william saunders]

why doesn't the government have any knowledge of patients being abused by dialysis technicians. I have a tech who saw me in pain and laughed while i screamed instead of doing what was needed to get me out of pain he waited until the other tech go so tired of me screaming that she told him to do something. Have we gone into this totally blind or doesn't the gov care, furthermore on the other end. Why doesn't the ADA have rules to make outside entities more compliant with some one on dialysis, for instance i cannot file a court case with my local magistrate because the day that the district attorney comes to the courtroom is a day I'm on dialysis there should be a rule to make them show in court two days a week or offer a peerson on dialysis another option to apply