Dialysis from the sharp end of the needle

Dialysis & CKD Blog Report 5/7

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 5/4.   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 update.
• Kamal Shah's Blog Kamal remembers a girl who uses an odd turn of phrase.
• Kaply, Inc. thinks Milla Jovovich is hot; has lots to do but can't because of rain (Time to move to a drier climate, maybe?); recounts some current things she enjoys.
• Toastiest a CAT scan reveals intracystic hemorrhage which explains his discomfort and shares some random thoughts including that he read about people who died because they ran out of viable dialysis access points.
• The Life of a 20-Something With Lupus has a really grueling class schedule that leaves her tired.
• Becky Perry  is still dehydrated and her BP is so low she requires medication to raise it.  She's worried. (Hang in there, Becky.  Maybe your PD prescription needs adjustment to take off less fluid?  Check with your nurse.)
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease his sister's new kidney is still "sleepy" post-transplant but she's up and walking a little; sister is having trouble eating and drinking and has heartburn, may go to a rehab. facility to regain her strength. (We wish her a complete recovery.)
• Jack's Kidney Adventure Jack gets a request to support the  Davita Patient Citizen efforts at  lobbying  Congress for  a bill that will have Medicare pay for immunosuppresive drugs for  the life of the kidney transplant.(Contact your members of Congress and ask them to support the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2009!)
• Life on dialysis ... and now life after my transplant! continues celebrating her dissertation and transplant birthday with family visits and a trip to Ireland;  birthday celebration and photos.
• PKD & Dialysis ... Where I Tell It Like It Is was the top fundraiser in the Kidney Walk and won 3rd in the banner contest (Great job!)
• On the Road to a Cure shares ideas for highlighting Lupus Awareness month (May); reports that Superjeweler.com will donate to the Lupus Foundation of America if you purchase a beautiful pendant set for Mother's Day (It really is lovely.); more Walk for Lupus Now events; and the LFA's  Neurology / CNS & Lupus webchat is May 13,  3 p.m. EST with guest expert, Robin Brey, MD, Professor of Medicine in the Division of Neurology at the University of Texas Health Science Center at San Antonio.
• Really, I'm as Old as I Feel? a wordless Wednesday picture entitled "Where is Abby?"
• I Am. Are you? recaps April activities for Organ Donor Awareness; and a really nice video about why Loyola University students "heart" organ donors.
• Transplant Alliance posts a request for some assistance with a dissertation project;
• Dialysis Postings has information on diet and nutrition for dialysis patients.
•  Bud's Ramblings He plants flowers in the toilets outside (Very funny photo, Bud.) and his PICC line is still itching.
• Disability Prejudice And Civil Rights Watch has a letter from the director of NAMI regarding support from the pharmaceutical industry, and provides links to use to critique it; more links to three timely articles and his opinions of them.
•  Renal Fellow Network reports on an alternative to the KDOQI Staging System for classifying the severity of reduced renal function.
• Uremic Frost reports on a study showing that primary care docs are not so good at treating hypertension; a book came out purporting that Napoleon died of kidney failure, not poisoning;  Fresenius Medical Care launches a national pharmacy that can provide dialysis patients with all of their prescriptions, over-the-counter medications and diabetic testing supplies directly through the mail at no additional cost; announcement of a new equation to figure out GFR that is better than the old one.
• Free range fish sticks has a story about a happy nocturnal dialysis user in Canada.
• Neophron's Senescence is recovering from jet lag, loves Kurdish songstress, Aynur Dogan and shares a video of her singing.
• pkdmom2five makes chocolate chip oatmeal cookies using tehina (sesame seed paste).  Cookies were great but tehina smells bad to her. (Personally, I love a little tehina drizzled on falafel and Israeli salad in a pita, Yum!)
• Mid-life ramblings had a quiet day (Sometimes quiet days are just what we need.); woke up at dialysis with a puddle of blood that leaked on her shirt (Bill P. calls these "Carrie" moments. and we've all had to change our bloody clothes one time or another so we don't terrify the public.)
• PKD World a link for action regarding the legislation to extend payment for immunosupressive drugs; and a link to a news story about altruistic organ donation.
• Kim Hoben's Blog hematocrit has tanked and she feels lousy, begs for a transplant
• My Chronic Kidney Disease recent test results are varied, some better, some not. He had hoped for more dramatic improvement.
• The Renal Unit current renal twitters, news, and blogs.
• Encompass Network Partners Zahid Ahmad, MD makes a great case for regularly evaluating the feet of diabetic hemo patients when they are at treatment to reduce amputations; and a Q & A on screening for peripheral arterial disease (PAD).
• Kidney Community Emergency Response reports that Merck told the CDC there will be a shortage of Hep B vaccine this year; Disetronic Medical Systems Inc. and FDA notified healthcare professionals about a defect in the “up” and/or “down” buttons of some ACCU-CHEK Spirit insulin pumps. Contact ACCU-CHEK Spirit hotline for a replacement pump.
• NephrOnline Blogs an excellent editorial by Mark E. Neumann reporting on major points made in  last week's nephrology conference on "ESRD: State of the Art and Charting the Challenges for the Future."
• Renal BizBlog reports on the start of Shad Ireland's “What Inspires You” bike tour.  (He Just rode through Phoenix! Go Shad, Go!!!)
• PKD Blog - Life with Polycystic Kidney Disease has a video of the Da Vinci robot peeling a grape (Remarkable, but I'm still not going to let that thing near me with a needle!)
• Writings along the cave walls - Ashbat's Lair has a Sephora gift certificate but the website gives her problems.

Dialysis & CKD Blog Report 5/4

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 4/30.   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 Blog update; Bill refutes skeptics regarding  H1N1 flu , points out how vulnerable incenter hemo patients are, and chastises centers that have inadequate emergency preparation (Unfortunately, this is likely most of them. This should be a wake-up call. Even if this round of flu eases up we must be prepared for pandemics.)
• Kamal Shah's Blog Kamal enjoys devotional Sufi music and provides a link to a Hindi karaokie site; gets too much information on Facebook.
• Kaply, Inc. has been spending some time outdoors on the patio enjoying cold drinks;
• Toastiest Mom's attempts at making Toastiest feel better about dialysis aren't helping; so she turns to Herman, her dog, for some video inspiration.  He wasn't too motivated.  (But he is a sweet looking dog with a fine orange collar.)
• Hasten down the wire reports on the Merck companies fake medical journals; and yearns for a more European type social system.
• The Life of a 20-Something With Lupus has problems with her phone lines (Don't you hate when that happens?)
• Nitey Nite- a nocturnal dialysis blog hates having to deal with new personnel and staff turnover in her unit is frequent.  (It is hard having to adjust to the newbies all the time and losing continuity of care is a serious safety issue.)
• Becky Perry discovers her weakness was due to dehydration and adjusts fluid and treatment accordingly.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease Her sister received a new kidney and is doing well (Congratulations! May it work well and last a long time.); and reflects on the anniversary of her own kidney transplant how her life and health has improved.
• Transplant Alliance reports on a transplant bowl-a-thon; has a slight headache.
• Kevin’s Blog has the dramatic birth story (with photos) of Kevin and Lisa's new baby named Faith Randall Carlson.  She was born at 12:03 PM on 4/28/2009,  weighed 8 lbs, 11 oz, and was 20.5″ long. She is named in honor of brother Randy, who was Kevin's kidney donor.  (She is a beauty! May she always be healthy, happy and a blessing to her parents.  Congratulations!)
• Life on Dialysis finished her dissertation and celebrates with drinks and dancing.(You go, Girl!  Congratulations!)
• Dialysis Postings has concerns about swine flu and even though it isn't yet in the Phillipines thinks it important to be prepared.
• Chronic Chick Talk is making adjustments to her blog site; and shares a music video.
• Dialyse This might get a kidney in a year or two and is ambivalent.
• Bud's Ramblings need hypoallergenic bandaids for his medication port and worries whether a needed medication will be approved by his insurance.
• Disability Prejudice And Civil Rights Watch writes more about psychophobia which he defines as individual prejudice and discrimination against people with or who are perceived by others, correctly or not, to have a psychiatric history or diagnosis; an article on the possible dangers of reevaluation counseling; a lengthy post on the polarity in mental health politics.
• Precious Bodily Fluids reports on a small controlled trial of prednisone, cyclophosphamide, and cyclosporine in lupus membranous nephropathy; and comparative studies of clevidipine to nitroglycerin, sodium nitroprusside, and nicardipine for acute hypertension treatment in cardiac surgery patient;  the FDA approves a polypill (three meds in one pill) for hypertension.
• Uremic Frost the FDA "cuts" Hydroxycut because it causes life threatening liver problems; development of a possible urine screening test for coronary artery disease; a study from New South Wales showed the risk for lung and urinary tract cancers, but not prostate cancer, was higher among men with kidney disease; a study that reports Hispanic dialysis patients suffer from a higher incidence of catheter related bacteremia compared with African Americans; and last,a study that seems to show that hyperuricemia appears to be and independent risk factor for all-cause and CVD mortality, but not kidney failure. 
• Renal tsar's blog a Q & A about hemo nurses and work permits;
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish)More on the psychology of dialysis patients but feels there is not enough research done in this area.
• Free range fish sticks Sheila is driving herself to Tennesee for some "nana" time that she badly needs.
• Neophron's Senescence enjoyed the Admiral's Lounge on his route back home and hopes to go back to Singapore sometime.
• pkdmom2five  updates on family activities and has an upcoming blood test scheduled.
• Mid-life ramblings exhausted herself with gardening and ended up late to dialysis because she slept through her alarm clock.
• Chronicals of the PD Warrior finds some fun websites and blogs: a pen reviewer, a person who is an expert in travel packing, and a video of an extraordinary bicyclist (Very fun, check it out!); and is crazy about Susan Boyle.
• As The Pump Turns has coffee served by half naked waitresses; and notes the fifth anniversary of a life changing time.
• Kim Hoben's Blog frustrations with getting a kidney.
• Living with PKD a post on pregnancy and belly buttons, also her kidneys have more cysts causing discomfort; forgot to do her 24 hr. urine collection and has a medical appt. in Boston for more tests.
• Biologically Safe Water Filters reports on a study showing the tremendous savings for US hospitals from preventing hospital acquired infections.
• Encompass Network Partners diseased leg arteries may trigger heart attacks and strokes; the importance of diabetics having foot exams.
• Kidney Community Emergency Response resources for emergencies - including swine flu are on the KCER website.
• I'm-u-no-logic after a long writing hiatus, I'm-u-no-logic returns with an intense poem about frustration with healthy visitors who waste what they have.
• The Renal Unit current renal twitters, news, and blogs.