Dialysis & CKD Blog Report 1/11

By Miriam Lippel Blum

Welcome back to Bill and the rest of the NxStage Freedom Cruisers.   May this be the first of many more adventures out in the world.  You have shown that dialysis need not preclude one from exploring interesting places.

Here are the CKD related blogs updated since my last report on 1/8. 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 On Day 6 of the NxStage Freedom Cruise, Bill goes snorkeling at Cozumel and later enjoys sunning on the beach, video of the beach; on Day 7 the seas were choppy as the Cruisers headed back to Miami, Bill posts a nice video summarizing the trip and reflects on how with a higher dose of dialysis and a NxStage machine enjoyable travel is possible; Bill writes that foreign travel on dialysis is an obtainable dream and to prove it lists all the places he has traveled as a dialyzor (an impressive list), he has a personal goal of visiting 50 countries and six continents. ( I'm convinced you will reach that goal.); Bill writes of an unpleasant encounter with a Miami-Dade county employee who gave the Freedom Cruisers' cab driver a hard time unnecessarily. (She deserves a reprimand for conduct unbecoming an officer.  I hope you'll report her to the appropriate authorities. Despite that, it sounded like a wonderful trip.)
• Kamal Shah's Blog Kamal would like to set up a support network of dialyzors in India  (he sees Lori Hartwell's Renal Support Network as a model) and asks for help;  Kamal has created an online website forum called Dialysis in India, it has sections that offer basic information, sections that offer his perspective on well-being and leading as normal a life on dialysis as possible and a forum where people can share problems specific to India, any helpful feedback would be appreciated. (Bravo, Kamal, for starting this.  No doubt there is a need for this and you will find the support you need as you assist others through your site.)
• Kaply, Inc. Still sick and coughing, Tracy made it home to Seattle and got loving attention from her friends and her cats.
• Hasten down the wire Michael is angry that Obama has flip-flopped on the issue of taxing health insurance benefits; a critique of a column by NY Times writer, Robert Lowenstein, wherein he suggests people walk away from mortgages when the value of their property has dropped lower than the mortgage.
• Becky Perry shares a personal story of religious faith and the birth of her son.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease Jeff gets an ulcer on his foot as a result of Charcot-Marie-Tooth Disease, he chooses conservative treatment right now but foot surgery may be in his future.
• Jack's Kidney Adventure In his first post of the new year, Jack celebrates good lab results and gives thanks for all the medical people who help support him. 
• Transplant, Tantrums, & Tiaras Holly feels helpless as her friend Jessica struggles for life after a double-lung transplant.
• On the Road to a Lupus Cure Lupus Foundation of America's Advocacy Day on Capitol Hill is March 15-16, 2010. Help educate Members of Congress about lupus, and encourage them to support more funding for lupus research.
• Really, I'm as Old as I Feel? Rob describes the upside of being married to a teacher.
• I Am. Are you? Having reached their goal of 7,000 Facebook fans, Donate Life Illinois increases their goal to 8,000.
• Lupus and Humor Carla is taking low dose naltrexone to help reduce lupus flares,  along with her gluten-free diet, no nutrasweet, and faithfully doing chi gung.
• Dialyse This Cassie posts a link to her radio interview; answers some questions about her blog; dreams of having a magic sci-fi hand-held device that will cure everything (Don't we all?), gets ready for her annual transplant workup.
• Bud's Ramblings shares Robert St. John's essay "My South."
• Linda Gromko MD kidneycare After reading Bill's posts on the NxStage Freedom Cruise, Linda and Steve are ready to sign up for the next one, shares a NxStage travel anecdote of her own; recommends films for inspiration and lists some that she and Steve like.
• Precious Bodily Fluids gives a link to a free service that will allow one to unlock downloaded PDF files so you can copy from them.
• Renal Fellow Network has a post on the three main mechanisms by which hypercalcemia of malignancy can occur; hydrothorax in PD patients; how too handle carotid stenosis (a major risk factor for stroke)  in patients with CKD and CKD5.
• UKidney has a Wall Street Journal article "The Meat Market: Tackling the Organ Shortage;" a case report of a kidney transplant in a bone marrow transplant patient; the Chinese herb Aristolochic acid can cause a severe form of interstitial nephritis, also patients with aristolochic acid toxicity are also prone to developing malignancies of the urinary tract (e.g. bladder cancer).
• Pediatric Nephrology has his Pediatric Grand Rounds compilation of posts; a case report on aHUS and Factor H S119L mutation; long term PD and encapsulating peritoneal sclerosis.
• pkdmom2five announces a music night at her church.
•  The Ballad of Billy The Kidney John shares some funny words of wisdom from his young goddaughter to end 2009 and wishes all good health for 2010; a profile of Jimmy Little, indigenous Australian country singer, actor, teacher and philantropist who received a kidney transplant in 2006 following 2 years of home dialysis.
• ....And Bells on Her Toes Kelly talks to the Transplant Coordinator to iron out some details in preparation for Alex's transplant; her daughter gets the stomach flu and must stay away from Alex whose transplant operation is pending.
• PKD World announces a free webinar tomorrow (1/12 at 8PM ET) on "What causes pain in PKD and what can you do about it?" Presenter is Dr. Ted Steinman, a Clinical Professor of Medicine at Beth Israel Deaconess Medical Center and Harvard Medical School .If you miss it, recorded version will be available here; an article on how to treat kidney cyst pain; an article on a revolutionary new operation that can 'cure' high blood pressure.
• DailyHemo - Home Dialysis Advocates New Video: Mom Gives Kidney to Daughter.
• Encompass Network Partners Researchers in Canada are recommending that people over age 40 be screened for peripheral arterial disease (PAD); people should talk to their doctor if they have difficulty with walking and develop pain or discomfort in the calves or legs that get better with rest. This symptom -- called claudication -- is angina in the legs and puts you at risk of heart attack; a patient survey shows deficiencies in footcare of diabetic patients on dialysis.
• Libre Clothing announces the winner of the "Share Your Story" contest.
• NephrOnline Blogs In the Health Care Beat blog, Rebecca Zumoff writes about the upside-down nature of our healthcare spending.  In particular, the penny wise pound foolish actions of cutting poor immigrants off from dialysis care only to have them end up in the ER later for more expensive care.

Comments

[Kathe LeBeau]

Quicke Notice of Info on an HHS Webinar regarding H1N1 and its impact on those of us with Chronic Illness...

HHS Webinar
You Are Invited: Webinar on 2009 H1N1 Influenza and its Impact on People with Chronic Medical Conditions

Date and Time: Tuesday, Jan 12, 2010 2:30-3:30 PM (EST) (11:30am-12:30 pm PST)

Presented by: The U.S. Department of Health and Human Services, CDC, the American Cancer Society; American Diabetes Association and American Lung Association

The speakers for this event include:

Nicole Lurie, MD, MSPH, Assistant Secretary for Preparedness and Response, U.S. Department of Health and Human Services

Anthony Fiore MD, MPH, Medical Epidemiologist, Influenza Division, CDC

Otis Webb Brawley, M.D. Chief Medical and Scientific Officer of the American Cancer Society

Christine Tobin - American Diabetes Association's President of Health Care and Education Mary Partridge, Chair, American Lung Association

A question and answer session will follow brief presentations by each of the speakers.

Dial into this phone number: 1-800-857-4785, passcode: 9335569

Click on this link to connect to the webinar: https://www.livemeeting.com/cc/orau1/join?id=4D94BQ&role=attend&pw=7%60%5DtHXpgC

[Miriam Lippel Blum]

Thanks, Kathe,for this important update.