By Miriam Lippel Blum
Here are the CKD related blogs updated since my last report on 10/7. 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 notices that most of the comments on the new bundling rules seem to revolve around the oral drug inclusion. He points out that there are many other important concerns that need to be asked and addressed.
- Kamal Shah's Blog Kamal continues the description of his vacation, with photos, including a very exciting ride down a natural water slide.
- Kaply, Inc. Tracy is feeling unsettled; discusses her grandmother's stomach surgery with her brother.
- Toastiest has photos of his bruised fistula arm, also his dog and cat; a video of Rachel Maddow commenting on Obama's Nobel Peace Prize.
- The Life of a 20-Something With Lupus reports on how her school tests are going; will be working on Canadian Thanksgiving; writes about people on the bus who irritate her.
- Becky Perry reviews Measure of Mercy by Lauraine Snelling; some web links she likes; her Friday list of things that make her happy; a link to a free scrapbooking search engine.
- On the Road to a Cure highlights a helpful book available in their store: Coping with Lupus by Dr. Robert H. Phillips.
- Renal Fellow Network writes about different and more accurate equation-based calculations used to determine total body water; results of a Poll of the Week regarding managing the potassium bath in a patient with hyperkalemia; an explanation of T-regs and the effect of the currently used immunosuppresant medications on T-reg function.
- Uremic Frost Fosrenol beat Renagel in a recent study.
- Diario de diálisis Crónicas (en Español) Journal dialysis - Chronicles (Google translated from Spanish) adds a FaceBook link to his blog.
- pkdmom2five shares family photos from a road trip.
- Dialysis and Me video blogs about grocery shopping; links to Keith Olbermann's excellent commentary on healthcare reform.
- Kidney Notes - Exploring the Intersection of Medicine and Technology Eight ways physicians can use Evernote.
- Lemonade and Kidneys Ruth's auction event went well, she had lots of friends help, and is exhausted from it all.
- The Ballad of Billy The Kidney John is off on a short vacation to city of Adelaide in South Australia and he reflects on the very different (to the rest of Australia) system of organ donation there.
- Living with PKD Heather goes to the ER after three days of vomiting, turned out to be the stomach flu, doctor gave her Zofran (an anti-nausea drug) that helped her.
- The inner game of PKD Richie explores the idea of having a teleconference on PKD issues, contact him with your thoughts on this.
- Nathan's PKD Nathan is sick with vomiting and diarrhea, gets tested for CMV; the CMV test is negative and after lots of fluid and some Immodium he is feeling much better.
- My New (transplanted) Kidney Al's latest clinic visit noted high blood pressure and raised creatinine, has some medication changes and must monitor his BP at home, otherwise he's pretty well.
- Michael W. Newman Michael is concerned about the quality of care at his HD unit since as a cost-cutting measure they have only one technician available for nine patients. (That certainly sounds inadequate. A recent article on best practices recommended a ratio of one technician to three or four patients. The Medicare rules for coverage require that a facility must have staffing sufficient so that quality care is provided to dialysis patients that is consistent with the patient plan of care and professional practice standards. I don't think they set a minimum ratio but often state laws do. I suggest you find out what standards exist in Florida law where you are and check with your region's ESRD network to file a complaint if you feel your care is compromised by inadequate staffing. Florida is Network 7. Here is their toll-free phone number: 800-826-3773 or local 813-383-1530, and here is a link to a Medicare publication on how to file a complaint regarding a dialysis center.)
- PKD World has a link to details of 17 current drug / non-drug trials for PKD; an article about PKD by Dennis Byrne from the Chicago Tribune; a Facebook link for people in the UK with polycystic kidney disease (PKD), their friends and families; a sad story from India about a woman whose husband dumped her after selling her kidney.
- DailyHemo - Home Dialysis Advocates New Videos: Wearable Nano Dialysis.
- Libre Clothing has a link to a feature article about their company in the October issue of Renal Business Today.
- KIDNEYBLOG Stephen Fadem, MD, explains the importance of getting your flu shot and posts a video of him getting one.
MIRIAM'S WEBSURFING FIND: If you don't get the Renal Support Network's (RSN) newsletter, Live & Give, you should. It's a wonderful resource for important information and upbeat features to raise your spirits. In their Spring/ Summer 2009 issue they had a moving article written by photojournalist, John F. Martin, about his kidney transplant surgery where his father was the donor. He is still going strong nine years after his transplant.
John also has a super website called In focus: A photojournalist chronicles his journey through kidney failure where he tells his whole story both in text and photographs.
The chapters of this Web site chronicle my journey through the kidney transplant process, from early discussions with my doctor, to dialysis and ultimately to the surgery on March 31, 2000.
My goals with this site are to help patients and families better understand what may be ahead for them on the kidney failure road and to demystify the transplant process.
It is an excellent site, well done, and very moving, as well as informative and artistic. Check it out!
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