By Miriam Lippel Blum
Well, now that 2010 has begun, I can tell that a lot of bloggers resolved to get back to updating their blogs with a vengeance, so there's lots to share and read. I particularly recommend reading Bill's posts on the Freedom Cruise adventures for fun and inspiration for what is possible.
Here are the CKD related blogs updated since my last report on 1/5. 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 continues blogging the NxStage Freedom Cruise. Bad weather at Cayman Island canceled snorkeling plans but he and his mom had fun shopping, playing golf and going on the ship's water slide. His treatment went well but he adjusted therapy fluid bags to accommodate boat movement that threatened to bowl over the machine; next he describes a reception hosted by NxStage where the cruisers were greeted by NxStage CEO Jeff Burbank and got to hear about some of the new data being developed to support the efficacy of more frequent dialysis; Day 4 took them to Isle Roatan, Honduras. Bill took a zip-line tour of the jungle canopy and posts a video to give us a taste of it; Day 5 brought the Cruisers to Belize where they explored ancient temples. There are links to photos and NxStage's cruise blog. Also, Bill finds that there is even more storage in his ship cabin and contemplates a longer cruise next time.
- Kamal Shah's Blog After hearing Indian politician Amar Singh, say that he got a transplant because he felt like dying when on dialysis, Kamal reflects on his own and other dialyzors' situation and wonders why we continue struggling and going on day after day. Is it that we really want to live or that we are more afraid of death? (I can't speak for others, Kamal, but I dialyze to live, fully realizing that some day, like the rest of humanity, I will die. I still find that the struggle is worth the effort. Reading about the Freedom Cruise gives me hope and inspiration to find the things, places, and people that give me joy and seeking them out, as I can, when I'm not dialyzing.); Kamal is proud that his Telugu language skills are gradually improving.
- Kaply, Inc. Tracy is stuck in Maine with a really nasty chest cold.
- Toastiest Toastie was able to change insurance plans (What a relief! We hope your transplant plans come to fruition.); a game show video; some early photos of his cats.
- The Life of a 20-Something With Lupus Flo successfully resolved problems with a hotel bill.
- Becky Perry has book reviews and peeks into the first chapters of Sydney's DC Discovery (Camp Club Girls #2) by Jean Fischer; Raising a Modern Day Princess by Pam Farrel and Doreen Hanna; Love Finds You in Holiday, Florida by Sandra D. Bricker; Becky reminds that you don't have to be dead to donate a kidney, posts contact information for the transplant programs she is registered with; shares an article that summarizes the impact that CKD has on the body.
- On the Road to a Lupus Cure The Lupus Foundation of America announced new funding for research grants to address issues of critical importance for people with lupus; guest blogger Wendy Rodgers writes about her Rose Parade float experience.
- I Am. Are you? has a video from a donor family event, A Day of Hope and Remembrance; photos of the Donate Life Rose Parade float; puts out a challenge to try to get 7000 fans on their Facebook page in 7 days.
- Chronic Chick Talk had a tooth extraction; lessons learned from a friend's moving experience; a gift of leg warmers from her Dad warm her inside and out; her daughter likes to play the boxing game using the Nintendo Wii; some Friday Fill-Ins; loved working at the skilled nursing facility, enjoyed bringing comfort to the residents and families she met there.
- Dialyse This Cassie has a few minutes of fame when her radio interview airs and she buys a USB modem so she can have internet access while on dialysis. (Every unit should have wifi, if you ask me.)
- Linda Gromko MD kidneycare Linda discusses the use of "anecdotal medicine" in addition to "evidence based " medicine in medical practice, and the importance of common sense; to save time and sanity she makes "kits" that contain the supplies needed for each daily dialysis treatment; Linda says bringing dialysis home is like bringing home a new baby...but you don't get a baby shower to help out. She makes helpful suggestions of resources to check out for support and ideas.
- Renal Fellow Network describes the mechanism by which insulin resistance causes sodium retention and hypertension; results from last week's poll were that the most appealing Nephrology Consult scenario was workup of new-onset glomerulonephritis.
- Uremic Frost Amgen Inc. and Johnson & Johnson face a review of their top-selling anemia drugs by an advisory panel for the U.S. Food and Drug Administration; has a link to a clinical article of interest to nephrologists in the New England Journal of Medicine.
- UKidney Differential Diagnosis of Hypomagnesemia; FDA will do a safety review of anemia drugs from Amgen and Johnson & Johnson; Keryx Biopharmaceuticals Inc. has
agreed with FDA regulators about the design of clinical studies for its
drug candidate Zerenex, which treats high levels of serum phosphorus in people with CKD5.
- Renal tsar's blog The tsar shares his goals for the year ahead: raising the profile of acute kidney injury so that it gets on every healthcare professional’s radar and every healthcare organization’s agenda; driving the data into knowledge initiatives that will support improved quality and outcomes for people with kidney disease and promoting shared decision making which he believes is at the core of high quality personalized care planning for long term conditions.
- Pediatric Nephrology Requests donations for Pediatric Kidney Foundation, a non-profit organization, whose chief objective is to provide support to children with renal diseases and create awareness for the same; article on the limitations of dual x-ray absorbtiometry; questions to ask when evaluating a child with nocturnal enuresis (bed-wetting); the history and epidemiology of urolithiasis; a link to a Powerpoint presentation on acute renal failure by Dr. Joel Topf.
- Diario de diálisis Crónicas (en Español) Journal dialysis - Chronicles (Google translated from Spanish) Alejandro writes about an Argentinian celebrity who died while awaiting a lung transplant.
- Lemonade and Kidneys Ruth and her husband have 100,000 frequent flier miles and are dreaming about where to go with them.
- ....And Bells on Her Toes Kelly's husband, Alex's transplant date is set for two weeks from now. He is getting a kidney from his father, Kelly is hopeful and terrified at the same time.(We all send good thoughts his way for a successful surgery and rapid healing.)
- The inner game of PKD Richie continues telling his PKD story with how he got his transplant.
- DailyHemo - Home Dialysis Advocates New Videos: World Kidney Day, 2010; How Many PD Boxes? Wow!
- Encompass Network Partners shares link and information about My Access Site which is a new online community to bring together dialysis patients and their supporting friends and families.
- Kidney Community Emergency Response links to an article in Renal & Urology News on disaster preparedness.
- Libre Clothing gives a link to an article with tips for dialyzors on winter storm preparation.
- NephrOnline Blogs in the Health Care Beat blog, Rebecca Zumoff lists three attainable New Year's goals for 2010 that the renal community and the Medicare ESRD program should reach for.
- Renal BizBlog has a link to a Fresenius article that offers advice for patients to prepare for this year’s winter storms.
- Phoenix27 wishes a Happy New Year and looks forward to a more positive and prosperous year.
Miriam's Websurfing Find:
This is a fun site to check out if you like to listen to books on tape. LibriVox provides free audiobooks from the public domain. There are several options for listening. The first step is to get the audio files into your own computer
LibriVox was started in August 2005, by Hugh McGuire, a Montreal-based writer and web developer. LibriVox was once called “perhaps the most interesting collaborative cultural project this side of Wikipedia.” They are the most prolific audiobook publisher in the world, putting out 70-100 books a month and have a catalog of 2,100+ books, in 29 languages. All driven by the passion of thousands of volunteers around the world who love books.
LibriVox volunteers record chapters of books in the public domain, and then release the audio files back onto the net for free. Since all their audio is in the public domain, you may use it for whatever purpose you wish.
If you'd like to participate, volunteering for LibriVox is easy and does not require any experience with recording or audio engineering or acting or public speaking. All you need is a computer, some free recording software, and your own voice. They accept all volunteers in all languages, with all kinds of accents. You don’t need to audition or send voice samples. They’ll accept you no matter what you sound like.
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