Dialysis & CKD Blog Report 6/24

By Miriam Lippel Blum

Today I am adding a little feature to the blog report.  It is called "Miriam's Websurfing Find."  Once in a while, when I come across a website or blog I think worthy of note, either for relevant educational content, humor, or other reasons, I will highlight it in this section.  Here are the regular CKD related blogs updated since my update on 6/21.   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 has a blog report.
• Kamal Shah's Blog Kamal is experiencing symptoms of hypoglycemia. (Maybe try adding some more protein to meals.)
• Kaply, Inc. Tracy enjoys a Nintendo party; finds out she needs shoulder surgery; in a nutshell: laproscopic, outpatient, six to eight weeks recovery plus physical therapy and no scooter or lifting. (We hope it all goes well.)
• Toastiest battles with depression and doesn't expect to continue his blog at this time.
• Hasten down the wire shares an introduction to hypermedia for MAC that he wrote circa 1990.
• The Life of a 20-Something With Lupus participated in a Sickle Cell Walkathon and carried the Torch of Life.
• Becky Perry describes her transplant evaluation in detail; puts ice in the water bowl of her outdoors cat to help keep him cool in the summer heat.
• Life on dialysis ... and now life after my transplant! shares a moving narrative from a 17-year old girl with cystic fibrosis who got a double lung transplant.
• On the Road to a Cure reports that LFA President, Sandra Raymond, testified before the Senate Defense Appropriations Subcommittee about lupus and asked for continued research funding; the summer 2009 issue of Lupus Now magazine is available.
• I Am. Are you? Donate Life reveals their 2010 Rose Parade Float design, New Life Rises.
• Dialysis Postings updates the current status of the H1N1 Influenza Virus, a.k.a. Swine Flu, in the Philippines.
• Disability Prejudice And Civil Rights Watch Alison is successfully weaned off Zyprexa; describes her traumatic experience with post-transplant psychiatric symptoms caused by steroids; and is charged an outrageous fee by the psych. hospital for drugs she neither wanted nor needed.
• Precious Bodily Fluids provides a link to a review of an interesting book called The End of Overeating: Taking Control of the Insatiable American Appetite by David A. Kessler, MD, former head of the FDA.
• Renal Fellow Network explains the chemistry behind pseudohyponatremia, wherein serum sodium concentration is actually normal but erroneously reported as low due to the presence of either hyperlipidemia or hyperproteinemia; explains propofol (a sedative) infusion syndrome which, given certain circumstances, can cause acute kidney injury in the ICU setting.
• Uremic Frost reports on an article that shows how acute appendicitis can be diagnosed by detecting biomarkers in the urine; Baxter Corp. makes a deal to improve and expand their CRRT(continuous renal replacement therapy) business.
• My Wife Has Lupus - Support for individuals whose family or friends have lupus writes that his wife experiences sweating and dizziness, and is conducting a poll to find out if others have these symptoms with lupus, too.
• Lemonade and Kidneys Her son has part of a toenail removed and it reminds her of when he got the PKD diagnosis, and when she had an infected nail removed.
• My Chronic Kidney Disease blood test shows no changes but he had hoped for improvement since he had done so many lifestyle adjustments.
• Mushroom's Blog shares a rainy photo and is glad he is now in sunny Long Beach; writes about the concept of constant change in the world and our bodies,  and the importance of living in the moment.
• Eating Well on Dialysis - Delicious low-sodium, low-potassium, low-phosphorus food for dialysis patients has recipes for Salmon with Maple-Lemon Glaze; and Hoisin Flank Steak with Asian  Cucumber Salad, (Sounds yummy to me.)
• I need a kidney gives a direct phone # for the UCLA intake specialist if you are interested in living organ donation for Jason or other UCLA patients, and some other related links.
• Encompass Network Partners reports that a study on peripheral artery disease is looking for Individuals living with foot and leg ulcers for a first-phase research study for a new medication.
• Kidney Community Emergency Respons announces a free meeting entitled SURVIVING THE STORM: DISASTERS AND DIALYSIS to ensure effective preparation and efficient response to disasters impacting dialysis and transplant patients and facilities.  Aug. 3, 2009, in Dallas, Tx.  
  
• NephrOnline Blogs - Health Care Beat: Thomas Keating discusses conflicts of interest in lawmakers who may be making decisions regarding the nation's health care.
• Renal BizBlog reports on KCER's— free collaborative meeting to help dialysis clinics with disaster planning. 
• The Renal Unit Latest renal tweets, news, and blogs.
• Lupus and Humor A new blog to the list.  Carla, now on a gluten-free diet, discovers pizza nirvana at Uno's Chicago Grill (a national chain, by the way) which has gluten-free pizza done right.
  

• MIRIAM'S WEBSURFING FIND:  Carla Ulbrich  is a humorous singer-songwriter who writes hysterical parodies, as well as her own songs.  In 2002, Carla suffered two strokes and kidney failure. Undeterred, she re-learned the guitar from scratch that year.
  
  Under the stress of constant "care," Carla finally snapped and became "The Singing Patient," resulting in her third CD, "Sick Humor."
  
  This collection features songs such as "Prednisone," "Sittin' in the Waiting Room," "On the Commode Again," and "What If Your Butt Was Gone" (a parody of one of Carla's own songs, also featured on Dr. Demento's 2005 "Basement Tapes" collection). Most of the lyrics were written during her many hours in doctors' waiting rooms. Which means the CD is not very doctor-friendly, but is very nurse- and patient-friendly.

         There are free Mp3 downloads on her website so you can enjoy and have a good laugh. I did.

Comments

[John Daley]

Gday Miriam

The idea of the new feature "Miriam's websurfing find" is good - thanks for adding this.

Cheers from Australia, mate!

John

[Peter Laird, MD]

Great addition Miriam. I will look forward to reading it often.

Peter

[Tracy Lynn]

Hey Miriam, I thought I had done so previously, but obviously I am wrong, so let me tell you now how much I appreciate the work you've been doing here. An excellent job, well done, you.

[Miriam Lippel Blum]

John, Peter, and Tracy,

Thanks for the kind words. I feel privileged to be able to do the report and thank Bill for the opportunity to make this contribution to DSEN.

I really do enjoy reading the blogs and helping people connect to them. It's a way to give support and exposure to those who take the time to write about their lives with CKD, or their nephrology practices, or the business of dialysis. The blog report does truly give one glimpses into the reality of the global renal community. There are bloggers here from the US, and Australia, South America, and the UK, the Philipines, and China, among other places.

Here we can share some of each others highs, lows, struggles,joys, despairs, the mundane, the extraordinary, and often the great courage that living with CKD requires. I can find inspiration in one blog, cry at another, sometimes laugh hysterically, and other times feel another's outrage. The medical bloggers teach me about aspects of renal disease I didn't know about before and new advances and studies that may be helpful.

I see it as a place for education, connection, and sharing.

Miriam

[n95 respirator]

Lupus and Humor is great! I had no idea Uno's Chicago Grill had gluten free pizza...? That place is great!